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## Posts

- [A charity investing in ME research](https://www.meresearch.org.uk/investing-in-me-research/) - ME Research UK is a charity with the primary aim of funding high-quality biomedical research into the causes, consequences and treatment of ME. We believe that only through high-quality research can ME be understood and a cure found, and we fund a growing number of scientists in the UK and worldwide. Learn more about the
- [NICE guideline implementation in Scotland](https://www.meresearch.org.uk/nice-guideline-implementation-in-scotland/) - Due to the fact that the devolved nations in the UK have their own NHS systems, NICE's Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management guideline does not apply automatically, say in Scotland. Each nation decides on whether and how to implement the NICE guideline in keeping with each nation's priorities and NHS infrastructure.
- [Retirement of Neil Abbot](https://www.meresearch.org.uk/retirement/) - Our Research & Operations Director, Dr Neil Abbot, retires this week after 15 years service. At his recent retirement lunch, he explained that reaching retirement age was a new experience, sobering in many ways but also the start of a new phase of life. Fortunately, he will continue to be involved with the charity in
- [Brain fog. Part 1: An introduction to cognitive function](https://www.meresearch.org.uk/brain-fog-1/) - ‘Brain fog’ is a common and life-limiting symptom of ME/CFS. It is the term used to describe a range of cognitive difficulties which (in the new NICE guideline) include "problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking". To work out what goes wrong in the
- [New PhD project on the mitochondria](https://www.meresearch.org.uk/new-phd-project-on-the-mitochondria/) - ME Research UK is very pleased to announce that we have made a new award for PhD-level research, for a project being conducted at La Trobe University in Melbourne, Australia by PhD student Tina Katsaros under the supervision of Dr Sarah Annesley. This new project is to investigate mitochondrial abnormalities in ME/CFS in more detail,
- [Spring Prize Draw 2017 - Results](https://www.meresearch.org.uk/spring-prize-draw-2017-results/) - Massive thanks to all who entered our Spring Prize Draw. Lynsay (Management Support Officer, PKAVS) was kind enough to draw the winning tickets. First prize of £500 was won by AG of Dunfermline, second prize of £150 by KH of Hexham and third prize of £50 by JYH, Southampton. Profits form the Spring Prize Draw
- [UK ME/CFS Biobank Established](https://www.meresearch.org.uk/uk-biobank-established/) - The CURE-ME research team at the London School of Hygiene & Tropical Medicine, and funders Action for M.E., the ME Association, ME Research UK, and a private donor, are delighted to announce the release of the Summary Report on the Establishment Phase of the UK ME/CFS Biobank (2011-2014) (read the report). UK ME/CFS Biobank has been
- [German Bundestag - CDU/CSU press for ME/CFS progress](https://www.meresearch.org.uk/german-bundestag-cdu-csu-presses-fro-me-cfs-progress/) - On April 19th 2023, in a hearing before the German Parliament's Health Committee, application 20/4886 (in German - google translated version is available) was discussed. Introduced by the CDU/CSU party (comprising sister parties, the CDU and CSU and known as the “Union” for short) it called on the German federal government to help those affected
- [Parliamentary Question & ME/CFS Medical Education](https://www.meresearch.org.uk/parliamentary-question-on-me-cfs-medical-education/) - On 8th June 2021, Helen Whately MP as Minister of State (Department of Health and Social Care) provided a written reply to a written parliamentary question from Caroline Lucas MP on behalf of Sussex & Kent ME/CFS Society: Q: To ask the Secretary of State for Health and Social Care, what UK medical school teaching
- [ZonMw ME/CFS funding - The Netherlands invest 11 million Euros in ME/CFS research](https://www.meresearch.org.uk/zonmw-me-cfs-funding-the-netherlands-invest-11-million-euros-in-me-cfs-research/) - In part implementation of a 28.5 million euros 10-year programme under the Dutch Minister of Medical Care and Sport, Tamara van Ark's, 2021 direction to ZonMw to carry out a biomedical research programme on ME/CFS, a grant in excess of seven million euros has been awarded to Amsterdam University Medical Centre (Amsterdam UMC) with a
- ["World-first study" - ME Research UK-funded project acclaimed in Australian media](https://www.meresearch.org.uk/world-first-study-me-research-uk-funded-project-acclaimed-in-australian-press/) - The results from Dr Leighton Barnden and colleagues at Griffith University Queensland, Australia ME Research UK-funded study have been covered widely in the Australian media. In a world-first, Griffith University researchers used an ultra-high field MRI (7 Tesla) to investigate how COVID-19 and ME/CFS mirror the same effects on the brain structure. ME Research UK
- [Dr. Sarah Knight Interview](https://www.meresearch.org.uk/dr-knight-interview/) - Last year, ME Research UK awarded funding to Dr. Sarah Knight and colleagues of the Murdoch Children’s Research Institute in Melbourne to use neuroimaging to examine the brain and its underlying functioning in adolescents with ME/CFS (read more). In the new ‘Meet the Scientists’ series from ME Australia, Sarah talks about her own path to
- [UK ME/CFS Delivery Plan - Update](https://www.meresearch.org.uk/uk-me-cfs-delivery-plan-update/) - On International ME Awareness Day 2022, the Rt Hon Secretary of State for Health and Social Care (Sajid Javid) issued a written statement on ME/CFS. Two initiatives were announced which the Secretary of State pledged showed the Government's commitment 'to better care and support for people living with ME/CFS and their families.' The second of
- [Bake4ME/CFS](https://www.meresearch.org.uk/bake4me-cfs/) - ME Research UK is one of nine charities to be supported by Bake4ME/CFS. Based on themes - with the Coronation (6th May) and The Great Outer Space Bakeoff (5th to 31st May) being the most immediate - this continuing project is sure to find favour with bakers old and new. Just like a simple recipe
- [UKRI posts ME/CFS research funding Highlight Notice](https://www.meresearch.org.uk/ukri-posts-me-cfs-research-funding-highlight-notice/) - Opened for applications from 1st May 2023 and without a closure date, the UK Research and Innovation (UKRI) has posted a highlight notice inviting applications for funding for research projects into ME/CFS. It is likely that the re-issue of a Highlight Notice is tied to moves to implement the undertakings given on behalf of Secretary
- [Fundraising Focus - April 2023](https://www.meresearch.org.uk/fundraising-focus-april-2023/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Australian Government report recommends increased ME/CFS research funding](https://www.meresearch.org.uk/australian-government-report-recommends-increased-me-cfs-research-funding/) - An Australian Parliamentary Report into long COVID has included a specific recommendation on ME/CFS research funding and even produced an addendum centring on ME/CFS 'given the volume of evidence regarding ME/CFS received, the Committee considers it is useful to acknowledge and discuss this topic.' Following a referral on 1 September 2022 from the Minister for
- [International ME Awareness Day & World ME Day](https://www.meresearch.org.uk/international-me-awareness-day-world-me-day/) - 2022 marks the 30th anniversary of International ME Awareness Day which is commemorated annually on 12th May. On this important day, organisations and individuals recognise and support the millions of people world-wide who are affected by ME/CFS and other chronic immunological and neurologic diseases by raising public awareness. In fact, 12th May is International Awareness
- [Team Run for M.E. 2023](https://www.meresearch.org.uk/team-run-for-m-e-2023/) - Run for M.E. 2023 have been busy of the past few months training (and baking). We are a small group of parents, friends and family of someone living with ME/CFS. On 7 & 21 May 2023, as part of ‘Walk for ME’, we will be doing a sponsored run or walk to raise awareness, show
- [Boost for Fibromyalgia research](https://www.meresearch.org.uk/boost-for-fibromyalgia-research/) - It has been announced that The Sir Jules Thorn Charitable Trust has granted £1,699,572 for a project entitled 'Novel Diagnostic and Therapeutic Insights for Fibromyalgia'. Dr David Andersson of King's College London will lead the research into an illness which affects over 2% of the UK population (80% of those affected being women), and which
- [Walk for ME 2023](https://www.meresearch.org.uk/walk-for-me-2023/) - The aim of Walk for ME is to get as many people as possible – especially the family and friends of those affected by ME – to do a sponsored walk, run, swim or ride of whatever length they feel comfortable with. There is no minimum distance, no targets, and, although it runs principally through
- [Give As You Live - Donate as you Shop](https://www.meresearch.org.uk/give-as-you-live-donate-as-you-shop/)
- [Fundraising Focus - March 2023](https://www.meresearch.org.uk/fundraising-focus-march-2023/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [A legacy of hope](https://www.meresearch.org.uk/a-legacy-of-hope/) - Thank you for taking the first step to creating a better future for all those affected by ME/CFS, by considering leaving a gift to ME Research UK in your Will. Many think that a gift in a Will to a charity must be a considerable sum – this is not the case. Any gift, no
- [A gut biomarker for ME/CFS?](https://www.meresearch.org.uk/a-gut-biomarker-for-me-cfs/) - The microbiome refers to the collection of around 100 trillion microorganisms, including bacteria, that live on or inside the human body. Many of these bacteria are beneficial to us and essential to our survival. In the gut, they live on the membranous lining and break down our food and help protect us against infection. This
- [Sarah Annesley announced as Tracey Banivanua Mar Fellow for 2023](https://www.meresearch.org.uk/sarah-annesley-announced-as-tracey-banivanua-mar-fellow-for-2023/) - We were delighted with the news that Dr Sarah Annesley was recently announced as one of the Tracey Banivanua Mar Fellows for 2023. Dr Annesley currently holds two ME Research UK grants for her research looking at mitochondrial dysfunction and mitochondrial energy inefficiency in ME/CFS, so we were very pleased to hear about her achievement.
- [Parliamentary Questions on Fibromyalgia](https://www.meresearch.org.uk/parliamentary-questions-on-fibromyalgia/) - Fibromyalgia is a chronic condition with similar overlaping symptoms and challenges as those faced by people with ME/CFS. In fact, in 2022, a study conducted at the National Institute of Cardiology, Mexico City, showed that 47% of people with either ME/CFS or fibromylagia actually fitted the criteria for both conditions. Given current parliamentary activity over
- [Brainstem volume changes](https://www.meresearch.org.uk/brainstem-volume-changes/) - Dr Leighton Barnden and colleagues at Griffith University in Queensland, Australia have just published the first results from their ME Research UK-funded study using MRI to explore the brains of people with ME/CFS. Their new paper, published in Frontiers in Neuroscience, reports that ME/CFS and long COVID patients had larger than normal volumes of several
- [Scottish Good Practice Statement on ME/CFS - February 2023 Update](https://www.meresearch.org.uk/scottish-good-practice-statement-on-me-cfs-february-2023-update/) - It was announced on 28th February 2023 that the Scottish Good Practice Statement on ME/CFS has undergone a partial update in light of the changes to the NICE guideline on ME/CFS (Oct 2021). This update was trailed by Maree Todd MSP (Minister for Public Health, Women’s Health and Sport) during the Scottish Parliament's debate on
- [Fundraising Focus - February 2023](https://www.meresearch.org.uk/fundraising-focus-february-2023/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Irish ME/CFS Association award to ME Research UK](https://www.meresearch.org.uk/irish-me-cfs-association-award-to-me-research-uk/) - ME Research UK is delighted to have been awarded €9000 by The Irish ME/CFS Association in its latest round of support for ME research. The award is made by the Trustees taking into account the Association members votes - which makes this grant so very special. Members were asked how they would wish €32,000 from
- [Scottish Parliamentary debate on ME - 2nd February 2023](https://www.meresearch.org.uk/scottish-parliamentary-debate-on-me-2nd-february-2023/) - The Scottish Parliament has held a debate on Sue Webber MSP‘s Motion centred on ME, its symptoms, and in particular the findings of the yet to be implemented 5 July 2022 ‘Report on a Scottish stakeholder review of the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome NICE guideline’. As the debate followed immediately after First Minister’s Questions, it
- [Endothelial dysfunction in ME/CFS](https://www.meresearch.org.uk/endothelial-dysfunction-in-me-cfs/) - Key findings This study from researchers in Norway found impaired blood vessel function in both small and large vessels in people with ME/CFS. Furthermore, small vessel function as well as clinical symptoms were improved slightly in individuals treated with rituximab for 18 months. These findings add support to the idea that abnormalities in the vascular
- [Is long COVID a new form of ME/CFS?](https://www.meresearch.org.uk/is-long-covid-a-new-form-of-me-cfs/) - Dr Ilduara Pintos-Pascual and colleagues at the Hospital Universitario Puerta de Hierro Majadahonda in Madrid have recently published a review paper suggesting that long COVID reflects a collection of clinical signs and symptoms that match much of the clinical picture found in ME/CFS. Such a suggestion will not surprise many ME/CFS sufferers, but there is ongoing debate
- [ME/CFS funding report](https://www.meresearch.org.uk/mecfs-funding-report/) - A report into the funding of ME/CFS by major institutional funders over the past decade was unveiled today at the UK ME/CFS Research Collaborative (CMRC) conference in Newcastle (read the report; pdf). The CMRC had commissioned ÜberResearch to interrogate its Dimensions database for relevant funding information on ME/CFS in comparison with other diseases. Surprisingly, there
- [UK Parliamentary question on ME/CFS research funding](https://www.meresearch.org.uk/parliamentary-question-on-me-cfs-research-funding/) - On International ME Awareness Day 2022, Lord Kamall, Parliamentary Under Secretary of State (Minister for Technology, Innovation and Life Sciences) issued a statement on behalf of the UK Secretary of State for Health and Social Care (Sajid Javid) which gave hope for improvements in the care of people with ME/CFS, in education of healthcare professionals,
- [High-burden under-researched medical conditions identified by EU report](https://www.meresearch.org.uk/high-burden-under-researched-medical-conditions-identified-by-eu/) - In response to the European Parliament's historic vote on 17th June 2020 urging the Commission to transform the ME research landscape, the European Commission released its work programme of Horizon Europe 2023 – 2024 last December in which approximately €13.5 billion was made available for European research and innovation. Contained within policy 4-Health Destination 3
- [New EU Horizon for ME/CFS Research?](https://www.meresearch.org.uk/new-eu-horizon-for-me-cfs-research/) - The European Parliament’s historic vote on 17th June 2020 urging the Commission to transform the ME research landscape was widely acclaimed as a major step forward. The problem being that a Resolution of the European Parliament is not binding and was always only a request to the Commission to act. The European Parliament returned to
- [Fundraising Focus - January 2023](https://www.meresearch.org.uk/fundraising-focus-january-2023/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Survey of severe ME/CFS in children](https://www.meresearch.org.uk/survey-of-severe-me-cfs-in-children/) - This article has been edited since publication to acknowledge uncertainties in the figures reported. ME/CFS can have a particularly devastating impact on the lives of children and young people, affecting their schooling as well as potentially depriving them of many of the activities that should make up a normal childhood. As in adults, children with
- [CDC commissioned report summarises research evidence in ME/CFS](https://www.meresearch.org.uk/cdc-commissioned-report-summarises-research-evidence-in-me-cfs/) - The results of the United States Center for Disease Control and Prevention (CDC) commissioned systematic review of the scientific literature on the treatment and management of ME/CFS are now available. The 'Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome' report is based on a literature search which occurred in January 2019 but was updated to
- [Books by Friends](https://www.meresearch.org.uk/books-by-friends/) - If you are looking for a great book to read and also wish to support ME Research UK then the answer is at your fingertips. Robert McMullen’s ‘Stranger and Stranger’ is the true story of an unlikely encounter in the extraordinary life of a young man diagnosed with ME. Jack Croxall’s highly acclaimed ‘Tethers Trilogy’
- [Could ME/CFS be caused by undiagnosed Lyme disease or other bacterial infections?](https://www.meresearch.org.uk/could-me-cfs-be-caused-by-undiagnosed-lyme-disease-or-other-bacterial-infections/) - Introduction For many decades, ME/CFS has been linked to a number of viral infections, specifically Epstein Barr Virus (EBV) and Human Herpes Viruses (HHV). However, bacterial infections may be another possible source of infection in ME/CFS. Lyme disease is a bacterial infection spread to humans by infected ticks. It is also known as Lyme borreliosis. Ticks
- [Blue Sunday 2023 - The Tea Party for ME](https://www.meresearch.org.uk/blue-sunday-2023-the-tea-party-for-me/) - Anna Redshaw’s ‘Blue Sunday’ Tea Party For M.E. in aid of various ME charities (including ME Research UK) will be held on Sunday 14th May 2023. As Anna explains The Sunday closest to M.E. Awareness day (12th May) has come to be known as Blue Sunday by the ME/CFS community. I held my first Tea
- [On-line fundraising for ME Research UK](https://www.meresearch.org.uk/on-line-fundraising-for-me-research-uk/) - There are many convenient ways to raise funds for ME Research UK but not everyone is able to fundraise by doing a sponsored event or by giving a donation. It is good to know that there are ways to make a donation when using online sites which do not actually cost a supporter anything. All
- [Dr Nuno Sepúlveda](https://www.meresearch.org.uk/dr-nuno-sepulveda/) - Dr Nuno Sepúlveda recently completed his ME Research UK-funded project looking at the potential role of Epstein-Barr virus (EBV) infection in the development of ME/CFS, and whether responses to EBV antigens could serve as biomarkers in some groups. You can read more about the work here. Nuno has also released a short YouTube video explaining
- [Walk for ME 2023 launched](https://www.meresearch.org.uk/walk-for-me-2023-launched/) - ME Research UK is grateful once more to be chosen as one of the featured charities for 2023’s Walk for ME scheme. Now in its eleventh consecutive year, the scheme has encouraged supporters to walk, run, swim and ride – in places as diverse as Ireland, Spain, New Zealand, Australia, Malaysia, Israel, and the USA, as well as here
- [Chronic pain and fatigue online survey](https://www.meresearch.org.uk/chronic-pain-and-fatigue-online-survey/) - Prof. Jarred Younger and colleagues in the Neuroinflammation, Pain, and Fatigue Laboratory at the University of Alabama have recently launched an online survey looking at chronic pain and fatigue. They are asking people to tell them more about their condition, and from the results they hope to discover the connections between symptoms and triggers. It
- [New evidence of link between HHV infection and ME/CFS](https://www.meresearch.org.uk/new-evidence-of-link-between-hhv-infection-and-me-cfs/) - Human beings are exposed to all manner of viruses, bacteria, fungi and parasites during their lives, some of the most common being human herpes viruses (HHVs). For most people, these viruses cause no noticeable disease or else only temporary symptoms such as sore throat or fever. But, after entering the body, they slowly make their
- [Give with Bing](https://www.meresearch.org.uk/give-with-bing/) - Give with Bing is a new way to support ME Research UK by using microsoft's Bing search engine. Your Bing searches will earn Reward points that are automatically donated directly to the cause of your choice. The best thing is that this will be done at no cost to you. There are only 3 stages
- [UK Govt Delivery Plan for ME/CFS - Update](https://www.meresearch.org.uk/uk-govt-delivery-plan-for-me-cfs-update/) - As a Stakeholder and active participant in the Department of Health and Social Care (DHSC) initiative, ME Research UK has received a further update on progress being made with the following being of note - Progress with developing a draft Delivery Plan on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) December 2022 Timetable for publication of the
- [What can long COVID research tell us about ME/CFS?](https://www.meresearch.org.uk/what-can-long-covid-research-tell-us-about-me-cfs/) - Cort Johnson from the Health Rising blog looks at the potential links between long COVID and ME/CFS, and whether the massive surge of interest in the former will ultimately benefit people with ME/CFS. The most important question facing ME/CFS right now might not be whether or not a virus or inflammation or blood vessel damage is present,
- [2022 – Informing All](https://www.meresearch.org.uk/2022-informing-all/) - Funding studies and influencing the research agenda formed but two parts of ME Research UK's work in 2022. During the year, the charity continued its role as an independent, science-centred provider of high-quality information and education for key decision-makers, healthcare professionals and those affected directly or indirectly by ME/CFS. In addition to discussing ME Research
- [Genetic biomarkers shared by ME/CFS and COVID-19](https://www.meresearch.org.uk/genetic-biomarkers-shared-by-me-cfs-and-covid-19/) - In September, ME Research UK attended the ME Genetics Research Symposium held at the Human Genetics Unit in the University of Edinburgh, and provided readers with an overview of the DeCode MEproject and the latest developments in the field. Following that, a recently published study in Annals of Clinical and Translational Neurology explores the possible genetic overlap between ME/CFS
- [Genetics Research Symposium – part 1](https://www.meresearch.org.uk/genetics-research-symposium-part-1/) - ME Research UK attended the ME Genetics Research Symposium held recently at the Human Genetics Unit in the University of Edinburgh. Over the course of two articles we will report on some of the research presented there. The symposium was chaired by Prof. Chris Ponting, Director of the Medical Research Council Genetics Unit at Edinburgh,
- [2022 – Influencing the Research Agenda](https://www.meresearch.org.uk/2022-influencing-the-research-agenda/) - Although investing in ME research is vital to ME Research UK, it also provides us with a unique perspective on wider issues in ME research, and in helping to influence wider ME research initiatives. The momentum gained by the October 2021 introduction of NICE's updated guideline 'Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management'
- [2022 – Our Research Year in Review](https://www.meresearch.org.uk/2022-our-funding-year-in-review/) - This year provided further evidence of the central need for greater investment in high quality research into the causes and consequences of ME/CFS. The International ME Awareness Day statement on behalf of the then Secretary of State for Health and Social Care, the Rt Hon. Sajid Javid, heralded a process "to drive high-quality applications for
- [Christmas Cards 2022](https://www.meresearch.org.uk/christmas-cards-2022/) - Our new collection of Christmas cards is now available to buy via email, phone, post or our online shop. There are ten designs available this year, and with every purchase you will be helping to support our work investing in ME research. We are so grateful to everyone who supports us in this way every
- [The Big Thank you!](https://www.meresearch.org.uk/the-big-thank-you/) - The Big Give Christmas Challenge ended at noon 6th December 2022 and thanks to our amazing supporters, and especially our Pledgers, a total of £20,359 was raised and will be invested in ME research globally. It is likely that the sum will rise further as additional Gift Aid will also be collected. Reaching, never mind
- [Big Give Christmas Challenge 2022 - final 24 hours](https://www.meresearch.org.uk/big-give-christmas-challenge-2022-final-24-hours/) - The Big Give finishes tomorrow at 12 noon The Big Give Christmas Challenge 2022 finishes at midday tomorrow, Tuesday 6 December, and ME Research UK is happy to report that we have exceeded our fundraising target of £7000. If you donated – many, many thanks. All monies raised will be invested in research which is
- [Could brain plaques in long COVID patients explain some of their symptoms](https://www.meresearch.org.uk/could-brain-plaques-in-long-covid-patients-explain-some-of-their-symptoms/) - A team of researchers at the Indian Institute of Technology in Delhi have used a type of MRI analysis called ‘susceptibility-weighted imaging’ to uncover brain changes in patients up to six months after they recovered from COVID-19. Results from the study will be presented next week at the annual meeting of the Radiological Society of North
- [Fundraising Focus - November 2022](https://www.meresearch.org.uk/fundraising-focus-november-2022/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Big Give Christmas Challenge 2022](https://www.meresearch.org.uk/big-give-christmas-challenge-2022-2/) - Thanks to our Pledgers, the first £7000 of donations made to The Big Give will be matched and all funds will be used to invest in more biomedical research into the causes and consequences of ME/CFS. All donations need to be made through the Big Give's website from noon 29 November 2022 to noon, 6
- [Will long COVID mean a new focus on understanding post-acute infection syndromes?](https://www.meresearch.org.uk/will-long-covid-mean-a-new-focus-on-understanding-post-acute-infection-syndromes/) - A recent article in the The Lancet Health Regional Europe suggests that the emergence of long COVID presents an opportunity to focus, or perhaps re-focus, on post-acute infection syndromes – otherwise known as post-viral fatigue syndrome (PVFS). The journal warns that since COVID-19 rates are set to increase this winter, the UK Government needs to implement a public health
- [The fragile process of homecoming – young women in Norway share their ME/CFS stories](https://www.meresearch.org.uk/the-fragile-process-of-homecoming-young-women-in-norway-share-their-me-cfs-stories/) - A recent article in the International Journal of Qualitative Studies on Health and Well-being delves into the lived experience of ME/CFS, exploring the recovery narratives of 13 young women who had fallen ill with severe ME/CFS during their childhood and adolescence, and focusing on what they had to say about their past experiences from the perspective of the
- [Could brain scans and artificial intelligence help diagnose ME/CFS?](https://www.meresearch.org.uk/could-brain-scans-and-artificial-intelligence-help-diagnose-me-cfs/) - Researchers at the Thompson Institute of the University of the Sunshine Coast in Australia are looking to use brain imaging to investigate the dynamics between blood supply, neuronal activity and energy needs in people living with ME/CFS. Project lead Dr Zack Shan and his team are recruiting 300 participants with ME/CFS or fibromyalgia, and others who are
- [House of Lords Debate on Long-COVID - 17th November 2022](https://www.meresearch.org.uk/house-of-lords-debate-on-long-covid-17th-november-2022/) - Initiated by Baroness Thornton the House of Lords on 17th November 2022 debated a 'motion to take note' "That this House takes note of the short and long term challenges presented by Long Covid." The debate also included references to ME/CFS which are worthwhile to note My Lords, I thank the noble Baroness, Lady Thornton,
- [Scottish Parliament Debate on ME - 2nd Feb 2023](https://www.meresearch.org.uk/scottish-parliament-debate-on-me-2nd-feb-2023/) - Sue Webber MSP's Motion in the Scottish Parliament highlighting ME, its symptoms, and in particular the findings of the yet to be implemented 5 July 2022 ‘Report on a Scottish stakeholder review of the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome NICE guideline’ has secured 58 signatures and, most importantly, cross party support. Such support meant that it
- [e-newsletter - 18 Nov 2022](https://www.meresearch.org.uk/e-newsletter-18-nov-2022/) - Breakthrough magazine The Autumn 2022 issue of Breakthrough magazine is now available online. This issue includes articles on a study looking for EBV biomarkers, a new PhD project investigating the genetics of ME/CFS, an article on roads not taken in ME/CFS research, research bites, and much more. Download a Copy Research news Our Science and
- [What do people with ME/CFS think caused their illness?](https://www.meresearch.org.uk/what-do-people-with-me-cfs-think-caused-their-illness/) - Infectious causes? Professor Leonard Jason and colleagues at the Centre for Community Research, DePaul University, Chicago, recently published a paper in the journal Chronic Illness, exploring ME/CFS patients’ perceptions of possible infectious causes for their illness. The objective of this study was to identify self-reported infectious illnesses associated with the onset of the disease. These are
- [Breakthrough Autumn 2022](https://www.meresearch.org.uk/breakthrough-autumn-2022/) - The Autumn 2022 issue of Breakthrough magazine is now available online. Download a pdf or read it online. This issue includes articles on a study looking for EBV biomarkers, a new PhD project investigating the genetics of ME/CFS, an article on roads not taken in ME/CFS research, research bites, and much more. The magazine is free to patients and
- [Motion before Scottish Parliament on M.E.](https://www.meresearch.org.uk/motion-before-scottish-parliament-on-m-e/) - Sue Webber MSP has launched a Motion in the Scottish Parliament highlighting ME, its symptoms, and in particular the findings of the yet to be implemented 5 July 2022 'Report on a Scottish stakeholder review of the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome NICE guideline'. That the Parliament notes that the Scottish Government commissioned and welcomed an
- [APPG on ME - Rethinking-ME Report](https://www.meresearch.org.uk/appg-on-me-rethinking-me-report/) - The All-Party Parliamentary Group on ME has launched its Rethinking ME report with a reception at Portcullis House, Westminster. The Right Hon. Sajid Javid (Secretary of State for Health and Social Care) spoke about a young relative's 6 year battle with ME. Now 18 years old, she is desperate to get on with her life
- [Fundraising Focus - April 2021](https://www.meresearch.org.uk/fundraising-focus-april-2021/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Assessing sleep and pain problems in adults with ME/CFS](https://www.meresearch.org.uk/assessing-sleep-and-pain-problems-in-adults-with-me-cfs/) - A new study from the USA, published in the journal Quality of Life Research, reports an investigation into sleep and pain problems in ME/CFS, finding that these symptoms are clearly related to the condition and that their severity can be measured using a standardised tool. The vast majority of ME/CFS sufferers report some level of sleep
- [New research paper from Prof. Jo Nijs explores epigenetic alterations and inflammation in ME/CFS](https://www.meresearch.org.uk/epigenetics-and-inflammation/) - Prof. Jo Nijs and colleagues at Vrije Universiteit Brussel and other centres in Belgium have recently published more findings from their ME Research UK-funded study looking at the potential role of epigenetics in ME/CFS. These results focus on COMT, which is an enzyme known to have effects on pain and inflammation. Read more here
- [Fundraising Focus - October 2022](https://www.meresearch.org.uk/fundraising-focus-october-2022-2/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Big Give Christmas Challenge - 4 weeks to go](https://www.meresearch.org.uk/big-give-christmas-challenge-4-weeks-to-go/) - There are only 4 weeks to go before the Big Give Christmas Challenge 2022 launches. The Christmas Challenge is the UK’s biggest match-funded campaign. For seven days, the challenge offers supporters the opportunity to double their donations — and, in doing so, make an extraordinary difference to the world’s biggest challenges. This year's event runs
- [Support ME Research UK this winter for FREE](https://www.meresearch.org.uk/support-me-research-uk-this-winter-for-free/) - Help us enter Give as you Live Online’s £10,000 Giveaway before 31st December 2022 Supporting ME Research UK could not be simpler this winter thanks to Give as you Live Online’s winter giveaway, and here is how you can take part. Give as you Live Online are giving you the chance to earn a £10
- [Decode ME - latest update](https://www.meresearch.org.uk/decode-me-latest-update/) - Decode ME has announced that they have reached the 18,000 registered participants mark with 13,500 people with ME having completed the questionnaire. The study aims to recruit tens of thousands of people from the UK to take part by completing a questionnaire and providing a saliva sample in order that participants' DNA can be sequenced
- [Abnormal autoantibodies found in patients with post-COVID syndrome (and ME/CFS)](https://www.meresearch.org.uk/abnormal-autoantibodies-in-pcs/) - More research evidence about the immune biology of long COVID was published last week in the journal Frontiers in Immunology. (Image above by pikisuperstar on Freepik) The study involved a collaboration between researchers at Charité – Universitätsmedizin Berlin in Germany and a long list of scientists from around the world, many of whom are also researching ME/CFS.
- [Fundraising Focus - September 2022](https://www.meresearch.org.uk/fundraising-focus-september-2022/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Genetics Research Symposium – part 2](https://www.meresearch.org.uk/genetics-research-symposium-part-2/) - ME Research UK attended the ME Genetics Research Symposium held recently at the Human Genetics Unit at the University of Edinburgh. Here is our second article reporting on some of the research presented there. (You can read part 1 here.) The symposium was chaired by Prof. Chris Pointing, Director of the Medical Research Council Genetics
- [ME/CFS Delivery Plan - Update](https://www.meresearch.org.uk/me-cfs-delivery-plan-update/) - The Department of Health and Social Care has issued an update on progress being made to allow a Delivery Plan on ME/CFS to be produced. the most relevant sections are as follows - Delivery Plan Task and Finish Group This oversight group has met three times since June 22. Terms of Reference have been approved
- [Emerging theories of long COVID](https://www.meresearch.org.uk/emerging-theories-of-long-covid/) - A recent article in the online journal Science covers the growing focus on long COVID research and highlights the work of three scientists trying to uncover the biological mechanisms driving the illness. Micro-clots Dr Danilo Buonsenso, a paediatric infectious disease physician at Gemelli University Hospital, Italy, witnessed first-hand how some children remained unwell for months after a mild SARS-CoV-2 infection. Their symptoms
- [Immune profiling long COVID](https://www.meresearch.org.uk/immune-profiling-long-covid/) - A few weeks ago, ME Research UK’s Science and Research Lead, Dr Keith Geraghty, attended the annual International Association of CFS/ME conference. He summarised some of the standout talks of days 1 and 2 and days 3 and 4 of the conference. One of the highlights was a very powerful talk by Prof. Akiko Iwasaki of Yale Medical
- [Decode ME launched](https://www.meresearch.org.uk/decode-me-launched/) - The world’s largest DNA study of ME/CFS will launch at noon 12 September 2022 – and it needs you to be part of it! DecodeME, the world’s largest study of ME/CFS, has launched. This £3.2 million study is a historic chance for people with ME/CFS all over the UK to help with research that could
- [e-newsletter - September 2022](https://www.meresearch.org.uk/e-newsletter-september-2022/) - A new class At the beginning of the summer, we were delighted to announce joint funding, with Action for ME, for a new PhD-level research project at King's College London. The new project is being conducted by PhD student Luke Marney, under the supervision of Dr Alfredo Iacoangeli, and is focused on the genetic basis of ME/CFS.
- [EU approves new blood test for long COVID](https://www.meresearch.org.uk/new-blood-test-for-long-covid/) - The incellKINE test is based on research identifying immune cells that are raised in long COVID patients. The developers claim the test provides greater than 90% accuracy in detecting long COVID. The EU has approved the test for sale and distribution, available from the end of September. The UK has its own approval authority and
- [Big Give Christmas Challenge 2022](https://www.meresearch.org.uk/big-give-christmas-challenge-2022/) - Last year, ME Research UK participated in The Big Give Christmas Challenge and attracted The Hospital Saturday Fund as a Charity Champion adding to much-needed funds to invest in ME research globally. This year we would like to increase the amount of research we can fund by raising more funds through The Big Give. The
- [Fundraising Focus - August 2022](https://www.meresearch.org.uk/fundraising-focus-august-2022/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [NIH renewed focus on the neurological symptoms of long COVID and ME/CFS](https://www.meresearch.org.uk/nih-renewed-focus/) - A recent article in the journal Science suggests that COVID-19 may cause a number of neurological symptoms (including confusion, stroke and neuromuscular disorders) for people who overcome the acute illness but go on to develop long COVID. What is most remarkable is that there appears to be very little direct evidence of viral damage to the brain and central
- [Replacing apathy with empathy](https://www.meresearch.org.uk/replacing-apathy-with-empathy/) - It is time for doctors to replace apathy with empathy in ME/CFS care. The 2021 NICE ME/CFS Guideline recognises that many ME/CFS patients have experienced prejudice and disbelief, and have felt dismissed and disbelieved by health professionals who are often poorly trained in how to diagnose or manage ME/CFS. Some patients may also experience a
- [Department of Health and Social Care's cross-government Delivery Plan on ME/CFS Update](https://www.meresearch.org.uk/department-of-health-and-social-cares-cross-government-delivery-plan-on-me-cfs-update/) - As a result of the former Secretary of State for Health and Social Care's ME/CFS initative announced on 12th May, the framework for the process has been released to all stakeholders. Headed by a Delivery Task and Finish Group there are 3 sub-committees looking at different aspects of issues affecting those with ME/CFS. The statement
- [Orthostatic Intolerance in ME/CFS and long COVID](https://www.meresearch.org.uk/orthostatic-intolerance/) - Simple tests could reveal the problem and empower patients Orthostatic Intolerance The last couple of months have seen a plethora of studies published on long COVID symptoms that are helping to shed new light on some of the common symptoms experienced by many people living with ME/CFS. Just recently, a stellar line-up of ME/CFS experts
- [Severe ME - the missing 25%](https://www.meresearch.org.uk/the-hidden-25/) - On Severe ME Awareness Day 2022, we look at some of the problems faced by this particularly overlooked group of ME/CFS patients, and what we might do to improve the situation. The Inverse Care Law (proposed by Julian Tudor Hart in the 1970s) suggests that the people most in need of good medical care often
- [2022 IACFS/ME Conference - Days 1 & 2](https://www.meresearch.org.uk/2022-iacfs-me-conference-days-1-and-2/) - IACFS/ME 2022 Virtual Medical and Scientific Conference July 27 - 30, 2022 The annual International Association of CFS/ME (IACFS/ME) conference opened this week with an introduction by its Director, Professor Fred Friedberg. 58 speakers, 20 posters, almost 300 attendees, many early-stage researchers, are due to 'attend' the conference. The growth in numbers attending reflects a growing
- [2022 IACFS/ME Conference - Days 3 & 4](https://www.meresearch.org.uk/2022-iacfs-me-conference-days-3-4/) - IACFS/ME 2022 Virtual Medical and Scientific Conference July 27 – 30, 2022 Day 3 (29 July 2022) of the IACFS/ME Annual Conference provided a continuous stream of fascinating and illuminating talks and presentations. The final two days of the conference had a particular focus on the immunology and management of Long-Covid with relevance to ME/CFS. Dr.
- [Gene SNPs in ME/CFS](https://www.meresearch.org.uk/gene-snps-in-mecfs/) - Human beings are 99.5% identical as regards their DNA gene sequences. The remaining 0.5% mainly consists of single nucleotide polymorphisms (SNPs, pronounced “snips”), which are small genetic changes in DNA that vary between individuals. Most SNPs are silent, but others have important consequences; a single SNP mutation in the APOE gene, for example, is associated
- [SNPs analysis in ME/CFS](https://www.meresearch.org.uk/snps-analysis/) - Single nucleotide polymorphisms (SNPs, pronounced ‘snips’) are small genetic changes in DNA that vary between people. In fact, human beings are 99% identical as regards their gene sequences, and the 1% which remains is mostly accounted for SNPs. While most SNPs are silent, some can have important consequences for individual susceptibility to disease and reactions
- [Fundraising Focus - July 2022](https://www.meresearch.org.uk/fundraising-focus-july-2022/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Kiltwalk 2020](https://www.meresearch.org.uk/kiltwalk-2020/) - Kiltwalk is a unique charity that enables walkers to raise money for any Scottish charity and, as ME Research UK is based in Perth, we are eligible to participate but we need your help. Thanks to Sir Tom Hunter and the Hunter Foundation every pound raised gains a top-up of 40p. That means for every
- [Vision complaints in ME/CFS through the lens of COVID-19](https://www.meresearch.org.uk/vision-complaints-in-me/) - Vision in ME/CFS While the defining symptoms of ME/CFS are fatigue, pain, post-exertional malaise and unrefreshing sleep, sufferers also experience many other lesser-publicised symptoms such as problems with vision. These can have an impact on many aspects of daily life. People living with ME/CFS often speak of an aversion to bright lights or even normal
- [Revisiting EBV](https://www.meresearch.org.uk/revisiting-ebv/) - Nuno Sepúlveda and colleagues from a number of institutions (including Charité – Universitätsmedizin Berlin and the London School of Hygiene and Tropical Medicine) have recently published more results from their ME Research UK-funded study looking at whether antibody responses against Epstein-Barr virus can serve as biomarkers for ME/CFS. You can read a brief summary of
- [Calling all researchers](https://www.meresearch.org.uk/calling-all-researchers-2022/) - ME Research UK is pleased to an announce an open call for applications from researchers wishing to investigate the causes, consequences and treatment of ME/CFS. Funding is available to support scientifically robust biomedical studies at appropriate host institutions worldwide. It is essential that applicants demonstrate clear translational potential for their proposed research, and how it
- [Progress on Isle of Man specialist ME/CFS and Long-COVID service](https://www.meresearch.org.uk/progress-on-isle-of-man-specialist-me-cfs-and-long-covid-service/) - On 14th July, the Isle of Man government announced that the Long COVID and ME/CFS support service for the Island was making good progress towards its anticipated launch date of September 2022. A progress goup comprised of doctors, allied health professionals, charity support representatives, and representatives from similar established services in the UK – spent
- [Forward-ME meets with Royal College of General Practitioners to discuss NICE guideline implementation](https://www.meresearch.org.uk/forward-me-meets-with-royal-college-of-general-practitioners-to-discuss-nice-guideline-implementation/) - RCGP REPORTReport on a meeting held on Thursday 16th June between Forward ME (FME) and the Royal College of General Practitioners (RCGP) to discuss implementation of the new NICE guideline on ME/CFS in primary care. Representing Forward ME Andrew Morris - Chair, Forward-MEJonathan Davies - Chair, ME Research UKDr Charles Shepherd - Trustee and Hon.
- [Research challenges in severe and very severe ME/CFS](https://www.meresearch.org.uk/research-challenges-in-severe-and-very-severe-me-cfs/) - Approximately a quarter of people with ME/CFS can be categorised as having severe or very severe illness, and may need a wheelchair to get around, or be house- or even bed-bound. Despite the considerable impact of their illness on these individuals’ health and wellbeing, their poor quality of life, and the restrictions on their day-to-day
- [Fundraising Focus - June 2022](https://www.meresearch.org.uk/fundraising-focus-june-2022/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Process momentum or resigned to failure?](https://www.meresearch.org.uk/minsterial-priorities/) - With the resignation yesterday evening (5 July 2022) of Sajid Javid, former Secretary of State for Health and Social Care, ME Research UK can but hope that the new Secretary, Steve Barclay, will continue the process of engagement and learning on ME/CFS laid down by his predecessor. In what was seen as a promising advance
- [Is fibromyalgia similar to ME/CFS?](https://www.meresearch.org.uk/is-fibromyalgia-similar-to-me/) - Highlights There is considerable debate about whether fibromyalgia and ME/CFS are similar or different illnesses This systematic review of 21 studies found a clinical overlap with ME/CFS in about half of fibromyalgia patients The findings suggest the illnesses share some disease-causing mechanisms such as infection or genetic factors Background For many years, researchers have tried
- [Australian study finds structural changes in the brain in ME/CFS](https://www.meresearch.org.uk/structural-changes-in-the-brain/) - Highlights Changes were detected in the hippocampus area of the brain of ME/CFS patients These changes were associated with fatigue, pain and physical function They were greater in patients identified using the ICC rather than the Fukuda criteria Background A recent paper from researchers at Griffith University in Queensland, Australia suggests that some symptoms of
- [ME/CFS Research Meeting](https://www.meresearch.org.uk/me-cfs-research-meeting/) - On 12th May 2022, the Rt Hon Sajid Javid, Secretary of State for Health and Social Care issued a statement which committed the Government to provide better care and support for people living with ME/CFS and their families. Research into the disease was highlighted and, in furtherance of this, the Secretary of State intimated that
- [ME Research UK and Action for M.E. launch pioneering PhD-level research](https://www.meresearch.org.uk/pioneering-phd-research/) - ME Research UK and Action for M.E. are delighted to announce the launch of a new ground-breaking PhD-level research project in conjunction with King’s College London. This collaborative initiative has been jointly funded between ME Research UK and Action for M.E. and will be hosted at King’s College London. The new project is to be supervised
- [Neurological Alliance for Scotland launch their 'Together for the One in Six, findings from the My Neuro Survey in Scotland' Report](https://www.meresearch.org.uk/neurological-alliance-for-scotland-launch-their-together-for-the-one-in-six-findings-from-the-my-neuro-survey-in-scotland-report/) - The Neurological Alliance of Scotland has released a report which analyses the Scottish responses to the 2021/22 National Neurology Patient Experience Survey (known as #MyNeuroSurvey) which was open from October 2021 to February 2022. There were 7881 adult responses across the UK to this survey, of which 10% (784) came from Scotland. 629 children and
- [Webinars by Prof Julia Newton](https://www.meresearch.org.uk/webinars-by-prof-newton/) - Six web seminars by Prof Julia Newton of Newcastle University, UK are now available to view, hosted by the active Dutch organisation ME info - formerly ME/CVS Vereniging. These talks are produced under the auspices of ‘Science to Patients’, which is a Dutch government subsidized project, in which the gap between medical science and patients is
- [MRC grant awards to Prof Julia Newton, Dr Wan Ng and colleagues](https://www.meresearch.org.uk/mrc-grant-awards-to-prof-julia-newton-dr-wan-ng-and-colleagues/) - The award by the MRC of almost £1 million to Professor Julia Newton, Dr Wan Ng and colleagues (Newcastle Biomedicine, Newcastle University, UK) for two biomedical projects is a great boost for research into ME/CFS in the UK. The initial call for applications Understanding the Mechanisms of CFS/ME was issued by the MRC in February 2011, with
- [An Interview With Prof Julia Newton](https://www.meresearch.org.uk/newton-interview/) - In a very interesting interview with ProHealth.com, Prof Newton shares some insights into the UK's ME/CFS Research Collaborative, aspects of her research, and the difficulties of obtaining funding. And ME Research UK get a mention too – as she says, "The muscle, brain and heart MRI studies have mostly been published...and to get a really
- [Royal College of Nursing Report on Long-COVID care](https://www.meresearch.org.uk/royal-college-of-nursing-report-on-long-covid-care/) - In a report to be delivered to nursing staff at the RCN Congress in Glasgow today (7 June), delegates will learn of the 'postcode lottery of care' available to those diagnosed with long-COVID. The RCN say that With an estimated two million people in the UK currently suffering from long COVID, and 71% of those
- [Fundraising Focus - May 2022](https://www.meresearch.org.uk/fundraising-focus-may-2022/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Platinum Champions Award for our Vice Chair](https://www.meresearch.org.uk/platinum-champions-award-for-our-vice-chair/) - Congratulations to our Vice Chair, Sue Waddle, who is one of only 490 people across the UK announced as a recipient of a Royal Voluntary Service Platinum Champions Award for volunteers. The Award is inspired by Her Majesty The Queen’s 70 years of service, and was made on the basis of nominations received. As The
- [Scottish Parliament debate on Long-Covid and comparisons with M.E.](https://www.meresearch.org.uk/scottish-parliament-debate-on-long-covid-and-comparisons-with-m-e/) - In a hybrid meeting of the Scottish Parliament on 19th May 2022 mention was made of ME within a section of the debate centred on long-Covid. John Mason MSP queried the Scottish Government's response to long-COVID in that he had read opinions that the 80 specialist clinics in England none reportedly offered effective treatments. Long
- [EBV and ME/CFS – what can we learn from multiple sclerosis?](https://www.meresearch.org.uk/what-can-we-learn-from-ms/) - Epstein-Barr virus (EBV) is extremely common and affects most people at some time over their lives. It has long been suggested as a trigger for ME/CFS, and we are currently funding research from Dr Nuno Sepúlveda and Prof. Carmen Scheibenbogen looking at this area. There is also considerable evidence suggesting that EBV is a causative
- [UK Parliament and ME/CFS](https://www.meresearch.org.uk/uk-parliament-and-me-cfs/) - Yesterday's (12 May 2022) highly welcome statement from the Rt Hon Sajid Javid, Secretary of State for Health and Social Care in which he acknowledged Firstly, that we do not know enough about ME/CFS, which must change if we are to improve experiences and outcomes. Secondly, we must trust and listen to those with lived
- [ME/CFS symptom research](https://www.meresearch.org.uk/me-cfs-symptom-research/) - For ME Awareness Week 2022, we posted a series of infographics on Facebook summarising some of the studies ME Research UK has funded investigating the symptoms of ME/CFS. In case you missed them, here they are together. Click the image to see the full-size version, and click "Read more" to learn more about each study.
- [NICE outlines steps needed to put ME/CFS guideline into practice](https://www.meresearch.org.uk/nice-outlines-steps-needed-to-put-me-cfs-guideline-into-practice/) - NICE has today, International ME Awareness Day (Thursday, 12 May 2022) published its implementation statement which sets out the practical steps needed to put its recent guideline (NG206) on the diagnosis and management of ME/CFS into practice. Our guideline on ME/CFS provides clear support for people living with ME/CFS, their families and carers, and for
- [Breakthrough Spring 2022](https://www.meresearch.org.uk/breakthrough-spring-2022/) - The Spring 2022 issue of Breakthrough magazine is now available online. Download a pdf or read it online. This issue includes new ME Research UK-funded PhD research looking for genetic risk factors; an overview of the definition of ME; research bites; and much more. The magazine is free to patients and their families, clinics, academics, and research groups, so please sign
- [Secretary of State for Health and Social Care's statement on ME/CFS](https://www.meresearch.org.uk/secretary-of-state-for-health-and-social-cares-statement-on-me-cfs/) - On International ME Awareness Day 2022, Lord Kamall, Parliamentary Under Secretary of State (Minister for Technology, Innovation and Life Sciences) issued the following important statement on behalf of the UK Secretary of State for Health and Social Care which has the potential to improve greatly the perception of ME/CFS and the quality of treatment offered
- [ME/CFS Priority Setting Partnership](https://www.meresearch.org.uk/priority-setting-partnership/) - The results of the ME/CFS Priority Setting Partnership were announced yesterday (12th May 2022, International ME Awareness Day) as the culmination of a process to "enable clinicians, patients and carers to work together to identify and prioritise evidence uncertainties in particular areas of health and care that could be answered by research". Facilitated by The
- [Perth turns blue for International ME Awareness Day 2022](https://www.meresearch.org.uk/perth-turns-blue-for-international-me-awareness-day-2022/) - Thanks to Perth and Kinross Council, various landmarks in Perth turned blue for International ME Awareness Day or purple to mark Fibromyalgia Awareness Day on 12th May 2022.
- [PEM – ME's gift to the medical world](https://www.meresearch.org.uk/post-exertional-malaise/) - Cort Johnson from the Health Rising blog explores how this core symptom of ME/CFS was first introduced and the essential role it now plays in defining the disease. The term post-exertional malaise, or PEM, is where the past and the future meet in ME/CFS. The disease’s inability to fit into known medical paradigms, and its attempts to
- [Fundraising Focus - April 2022](https://www.meresearch.org.uk/fundraising-focus-april-2022/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Fundraising Focus - March 2022](https://www.meresearch.org.uk/fundraising-focus-march-2022/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Taking heart. Part 1: An introduction to the heart and blood vessels](https://www.meresearch.org.uk/taking-heart-1/) - Although it's not a part of the body most readily linked to ME/CFS, there is plenty of evidence showing that the heart, blood vessels and autonomic nervous system (which controls the heart) are affected in people with the disease. Some of the first research supported by ME Research UK more than twenty years ago concerned
- [Taking heart. Part 2: The heart and circulation in ME/CFS](https://www.meresearch.org.uk/taking-heart-2/) - This is the second article by Dr Eleanor Roberts looking at how abnormalities in the heart and circulation may be involved in some of the symptoms of ME/CFS. Read part 1 here, which provides an introduction to the heart, blood vessels and how they are regulated. Heart rate Studies have shown that some people with
- [New International Classification of Diseases (ICD-11) comes into Effect](https://www.meresearch.org.uk/new-international-classification-of-diseases-icd-11-comes-into-effect/) - On 11th February 2022, the World Health Organization's (WHO) Eleventh Revision of the International Classification of Diseases (ICD-11) came fully into effect. The ICD provides a common language for health professionals to allow the sharing of standardised information across the world. It is the foundation for identifying health trends and statistics worldwide, containing around 17,000
- [Blue Sunday - The Tea Party for M.E.](https://www.meresearch.org.uk/blue-sunday-the-tea-party-for-m-e/) - Anna Redshaw's ‘Blue Sunday’ Tea Party For M.E. in aid of various ME charities (including ME Research UK) will be held on Sunday 15th May 2022. As Anna explains On Sunday 15th May, people from all over the world will meet up online to chat and leave comments on each other’s posts. While doing so
- [Award for Newcastle ELUCIDATE study](https://www.meresearch.org.uk/award-for-newcastle-elucidate-study/) - Many congratulations to James Allison, Elizabeth Offen and colleagues who received an award for their poster presented at the Orofacial Pain Early-Career Network Symposium in November last year. The poster summarised their plans for the ME Research UK-funded ELICIDATE study looking at pain and autonomic dysfunction in ME/CFS, and was awarded the symposium poster award
- [News from the USA - CDC/Medscape, ARPA-H and a presidential Memorandum](https://www.meresearch.org.uk/news-for-the-usa-cdc-medscape-and-arpa-h/) - The U.S. federal government has announced initial funding of $1 billion to establish an Advanced Research Projects Agency for Health (ARPA-H) "tasked with building high-risk, high-reward capabilities (or platforms) to drive biomedical breakthroughs—ranging from molecular to societal—that would provide transformative solutions for all patients." President Biden, in proposing the new body (and pressing that it
- [Newly funded PhD genetics research](https://www.meresearch.org.uk/newly-funded-phd-genetics-research/) - We are delighted to announce ME Research UK's first award for PhD-level research. This is for a project being conducted at the University of Edinburgh by PhD student Gemma Samms under the supervision of Professor Chris Ponting. The project aims to identify which dysfunctional genes highlighted by DecodeME are most likely to contribute to the
- [Decreased NO production](https://www.meresearch.org.uk/decreased-no-production/) - Dr Francisco Westermeier and colleagues recently published more results from their ME Research UK-funded study looking at endothelial dysfunction in ME/CFS, and we have now added a more detailed discussion of these results and what they might mean. In this paper, the team reports reduced production of nitric oxide in endothelial cells exposed to blood
- [Dr Gordon Parish - an appreciation](https://www.meresearch.org.uk/dr-gordon-parish-an-appreciation/) - It is with great sadness that we learned of the death of Dr J. Gordon Parish, aged 92, on September 13th at his home in the village of Stanley in rural Perthshire. Dr Parish was one of the group of trustees who founded ME Research UK (originally called MERGE) in 2000, becoming a valued patron
- [Fundraising Focus - February 2022](https://www.meresearch.org.uk/fundraising-focus-february-2022/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Forward-ME Group Minutes - 1 May 2018](https://www.meresearch.org.uk/forward-me-group-minutes-1-may-2018/) - Minutes of the Meeting held in Residence 1, House of Lords, Tuesday 1 May 2018, 2.00 pm Present: Countess of Mar (Chairman); Carol Monaghan MP; Amy Brett (PA to Ms Monaghan); Bill Kent (reMEmber); Jane Colby & Anita Williams (TYMES Trust); Tony Crouch (25% Group); Christine Harrison (Brame); Clare Ogden (AFME); Dr Charles Shepherd (ME Association);
- [European Parliament Interest Group on ME/CFS](https://www.meresearch.org.uk/european-parliament-interest-group-on-me-cfs/) - Given impetus by MEP Pascal Arimont, and attended by two other MEPs (Cindy Franssen and Radan Kanev) and representatives of three more (Alex Bernhuber, Jordi Cañas and Günther Sidl), a new European Parliament Interest Group on ME/CFS has been formed. At its first meeting on 28th January 2022, the MEPs were joined by patient representatives
- [Fundraising Focus - January 2022](https://www.meresearch.org.uk/fundraising-focus-january-2022/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Walk for ME 2022](https://www.meresearch.org.uk/walk-for-me-2022/) - ME Research UK is grateful once more to be chosen as one of the featured charities for 2022’s Walk for ME scheme. Now in its tenth consecutive year, the scheme has encouraged supporters to walk, run, swim and ride – in places as diverse as Ireland, Spain, New Zealand, Australia, Malaysia, Israel, and the USA, as well as here
- [Austrian results published](https://www.meresearch.org.uk/austrian-results-published/) - Dr Francisco Westermeier and colleagues have just published more results from their ME Research UK-funded study looking at endothelial dysfunction in ME/CFS. In this paper they report reduced production of nitric oxide in endothelial cells exposed to blood plasma from people with ME/CFS. There will be a more detailed discussion of these findings in the
- [Looking back at 2021](https://www.meresearch.org.uk/looking-back-at-2021/) - Another year of disruptions has not stopped ME/CFS researchers around the world in their search for a better understanding of the illness, and ME Research UK continues to support this work as much as we can. We were delighted to announce the award of funding to four new projects in 2021. Leighton Barnden in Australia
- [Parliament of the European Union Petition - Update](https://www.meresearch.org.uk/parliament-of-the-european-union-petition-update/) - The European Parliament’s historic vote on 17th June 2020 urging the Commission to transform the ME research landscape was widely acclaimed as a major step forward. The problem being that a Resolution of the European Parliament is not binding and merely a request to the Commission to act. Mindful of this, the Petitioner, Ms. van
- [Priority Setting Partnership - Final Stage](https://www.meresearch.org.uk/priorirt-setting-partnership-final-stage/) - The ME/CFS Priority Setting Partnership enters its final stage with workshops to decide the top ten ME/CFS research priorities. The aim of the workshops is to agree the top ten questions for research into ME/CFS which matter most to people living with ME/CFS, their carers, supporters, and the healthcare professionals who work with them. It
- [Dialogues for a Neglected Illness](https://www.meresearch.org.uk/last-dialogues-video/) - Natalie Boulton has released the final video in her series addressing different aspects of ME/CFS, and including interviews with and input from doctors, researchers, patients, carers and advocates. This last major film, which Natalie has been working on over the last year, is called "The Tangled Story of ME/CFS: Controversy, Denigration and Ignorance", and covers
- [The rise and fall of CBT/GET](https://www.meresearch.org.uk/rise-and-fall/) - Cort Johnson from the Health Rising blog explores how a controversial treatment approach with only modest benefits came to dominate ME/CFS for more than two decades. The ME/CFS community breathed a sigh of relief this year with the release of the 2021 NICE guideline on ME/CFS. In a dramatic shift, NICE – whose former recommendations had instilled cognitive
- [Last Chance to Vote - ME/CFS Priority Setting Partnership](https://www.meresearch.org.uk/last-chance-to-vote-me-cfs-priority-setting-partnership/) - Deadline Monday 13th December 5pm Over 1,700 people have now voted for their top ten ME/CFS research priorities. With the deadline fast approaching this is your last chance to join them and vote. This process aims to give greater voice to people affected by ME/CFS to decide the direction of ME/CFS research and funding than
- [The Big Give - The Big Thank You](https://www.meresearch.org.uk/the-big-give-the-big-thank-you-2/) - The Big Give Christmas Challenge ended at noon 7th December 2021 and thanks to the tremendous generosity of ME Research UK supporters, a total of £7700 was raised and will be invested in ME research globally. We thank our Pledgers whose funds were used to match the first £1900 of donations and The Hospital Saturday
- [Big Give 2021 - Now Live](https://www.meresearch.org.uk/big-give-2021-now-live/) - One donation = Double the Difference From noon on 30 November to midnight on 7 December 2021, the Big Give Christmas Challenge will be live and there’s a pot of £3,800 available to ME Research UK, allowing supporters’ donations to be doubled. The matched funding comes from our Pledgers and from The Hospital Saturday Fund.
- [Fundraiser Focus - November 2021](https://www.meresearch.org.uk/fundraiser-focus-november-2021/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [KiltWalk 2022 - Registration now Open](https://www.meresearch.org.uk/kiltwalk-2022-registration-now-open/) - Kiltwalks are walking events which raise much-needed funds for Scottish charities and projects. Kiltwalkers can raise funds for any charity of their choice and thanks to the generosity of Sir Tom Hunter and The Hunter Foundation, all funds raised will be topped up by 50%*. Since 2016, Kiltwalk Heroes have raised £16.5 million and The
- [Breakthrough Autumn 2021](https://www.meresearch.org.uk/breakthrough-autumn-2021/) - The Autumn 2021 issue of Breakthrough magazine is now available online. Download a pdf or read it online. This issue includes ME Research UK-funded research on brainstem dysfunction, mitochondrial abnormalities and muscle pain; a review of brain imaging in ME/CFS; research bites; and much more. The magazine is free to patients and their families, clinics, academics, and research
- [Priority Setting Partnership - Your Choice](https://www.meresearch.org.uk/priority-setting-partnership-your-choice/) - Over 1,000 people have now voted for their ME/CFS research priorities. People with ME/CFS, carers and clinicians are all asked to take part. Vote for your research priorities The ME/CFS Priority Setting Partnership is particularly looking for more people from ethnic minorities, carers and health care professionals to take part. So far: Just 4% of
- [One donation = Double the Difference](https://www.meresearch.org.uk/big-give-2021/) - Big Give 2021 From noon on 30 November to midnight on 7 December 2021, the Big Give Christmas Challenge will be live and there's a pot of £3,800 available to ME Research UK, allowing supporters' donations to be doubled. The matched funding comes from our Pledgers and from The Hospital Saturday Fund. It's really simple
- [Countess of Mar talk](https://www.meresearch.org.uk/rsm-mar-talk/) - The Royal Society of Medicine in London hosted a meeting on 'ME/CFS: Frontiers' on March 18th 2015. The aim was to give delegates, all members of the Royal Society of Medicine, “a rare opportunity to learn about ME/CFS from a clinical, scientific and political perspective.” Speakers included Dr Charles Shepherd of the ME Association; Anna
- [All-Party Parliamentary Group on ME - MP call](https://www.meresearch.org.uk/all-party-parliamentary-group-on-me-mp-call/) - Next meeting of the All Party Parliamentary Group on ME - the new NICE guideline The next meeting of the All-Party Parliamentary Group on Myalgic Encephalomyelitis (APPG on ME) will take place from 2 - 3 pm on 24 November 2021. This meeting will focus on the new National Institute for Health and Care Excellence (NICE) guideline
- [Brain fog. Part 2: Cognitive function and ME/CFS](https://www.meresearch.org.uk/brain-fog-2/) - This is the second article by Dr Eleanor Roberts looking at brain fog, the range of cognitive difficulties experienced by people with ME/CFS. Read part 1 here, which introduces cognitive function and the areas of the brain involved. Cognitive dysfunction can be one of the most distressing symptoms for people with ME/CFS. This includes decreases
- [Can DNA paperclips explain invisible diseases?](https://www.meresearch.org.uk/dna-paperclips/) - Jolien Hendrix is a PhD student researching the epigenetics of ME/CFS as part of a project we are supporting at KU Leuven in Belgium. She has produced this fantastic video explaining more about epigenetics (or DNA paperclips) and their relevance to the disease. Read more about her project here
- [12 Days of Giving 2021](https://www.meresearch.org.uk/12-days-of-giving-2021/) - £120,000 - 12 Charities - 12 days For 12 days, from 6 – 21 December 2021, Ecclesiastical Insurance will be donating a total of £120,000 to charities. 120 lucky charities will each receive £1000 if their names are selected randomly from charities nominated by their supporters. The more nominations ME Research UK receives – the
- [NICE guideline publication awaited](https://www.meresearch.org.uk/nice-guideline-publication-awaited/) - When the National Institute for Health and Care Excellence (NICE) announced on 20th September 2017 that it was planning a full update of its guideline on the diagnosis and management of CFS/ME ME Research UK did not think that almost 4 years later the process would be incomplete. The review was welcomed as many, in
- [NICE's 'Pause' and its importantance](https://www.meresearch.org.uk/nices-pause-and-its-importantance/) - Many people awoke on 18th August to headlines in newspapers, listened to Radio 4’s Today programme, and even noticed a story on the ‘red button’ which covered the news that a NICE guideline publication into ME had been ‘paused’ only hours before its release. The gist being that ME charities were baffled and/or angry and certain
- [NICE guideline Review - timeline](https://www.meresearch.org.uk/nice-guideline-review-timeline/) - Given all the delays concerning publication of the NICE guideline it is useful to recall key staging dates in order to give context. With acknowledgement to NICE - we reproduce their timeline leading to the 'non-publication' of the new guideline on the diagnosis and management of ME/CFS. Additional items added by ME Research UK are
- [NICE roundtable Minutes](https://www.meresearch.org.uk/nice-roundtable-minutes/) - NICE has produced Minutes from the roundtable discussion of 18th October which led to the publication of the new guideline 'Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management' [NG206]. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management Roundtable discussion - Minutes 18 October 2021Thames Room, 2nd Floor 2 Redman Place, London, E20 1JQ
- [Fundraising Focus - October 2021](https://www.meresearch.org.uk/fundraising-focus-october-2021/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Updated NICE guideline: recommendations for research](https://www.meresearch.org.uk/nice-research-recommendations/) - While the updated NICE guideline on ME/CFS is focused on the diagnosis and management of the illness, it acknowledges that there is still much to learn about it, and therefore makes some useful recommendations for research. These recommendations largely relate to the effectiveness of diagnostic tests and criteria, and the use of health-outcome measures in
- [Top 10 takeaways from the updated NICE guideline](https://www.meresearch.org.uk/top-10-takeaways/) - Today's publication of the updated NICE guideline on ME/CFS marks a significant step in the acceptance of ME as a physical illness and the recognition of appropriate treatments for people affected by the condition. There are marked changes from the previous version in how people are to be diagnosed and what treatments can be offered.
- [Forward ME's response to the updated NICE guideline](https://www.meresearch.org.uk/updated-nice-guideline-forward-me/) - ME Research UK is a member of Forward-ME, an alliance of several UK charities and organisations which aims to provide a unified voice for the ME community. Below is the press statement from Forward-ME in response to the new NICE guideline on ME/CFS, which summarises some of the changes from the previous version. Download the
- [Our response to the updated NICE guideline](https://www.meresearch.org.uk/response-to-updated-nice-guideline/) - Download the new guideline here Read NICE's official press release here Read Forward-ME's response here Today’s publication by NICE of its updated ‘Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management’ clinical guideline marks a significant step in both the acceptance of ME as a physical illness and the recognition of appropriate treatment needs of
- [NICE announces publication of updated ME/CFS guideline](https://www.meresearch.org.uk/nice-guideline-published/) - Below is NICE's official press release announcing publication of its updated ME/CFS clinical guideline. Download the new guideline here Read ME Research UK's response here Read Forward-ME's response here NICE ME/CFS guideline outlines steps for better diagnosis and management NICE has today (29 October 2021) published its updated guideline on the diagnosis and management of
- [Forward-ME statement on roundtable NICE guideline meeting](https://www.meresearch.org.uk/forward-me-statement-on-roundtable-nice-guidelinemeeting/) - On Monday, Forward-ME and member charities attended a round table to review the new ‘NICE guideline on ME/CFS’ with representatives from NICE and clinical groups. The meeting followed the Chatham House Rule, meaning that we cannot attribute comments to individuals. This ensured that all groups were able to speak freely. The round table reviewed the
- [Priority Setting Partnership - Deadline for Views](https://www.meresearch.org.uk/priority-setting-partnership-deadline-for-views/) - The ME/CFS Priority Setting Partnership (PSP) is giving the public the opportunity to define the top ten priorities for future ME/CFS research, but time is running out. The deadline for submissions is 5pm Monday 13th December 2021 In partnership with the James Lind Alliance, the ME/CFS Priority Setting Partnership has produced a survey asking those
- [NICE guideline to be published](https://www.meresearch.org.uk/nice-guideline-to-be-published/) - NICE has announced (20th October 2021) that they will publish the guideline following a meeting of its Guidance Executive next week. The announcement follows the roundtable meeting held earlier on 18th October 2021 involving representatives from a range of patient and professional organisations, to discuss concerns raised about some aspects of the guideline that had
- [NICE clarifies Agenda and Discussion Points](https://www.meresearch.org.uk/nice-clarifies-agenda-and-discussion-points/) - NICE have published both a more detailed agenda and a list of discussion points for the 18th October roundtable meeting which will help map the future of the paused ME/CFS guideline. The Agenda is as follows - Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and managementRoundtable discussion - Agenda 18th October 2021 – 14:00-17:00Thames Room,
- [WHO publishes a clinical definition of Long-COVID](https://www.meresearch.org.uk/who-publishes-a-clinical-definition-of-long-covid/) - On 6th October the WHO published a clinical case definition of post COVID-19 condition. The organisation acknowledges that the definition may change as new evidence emerges and that its understanding of the consequences of COVID-19 continues to evolve. Table 3 of the document summarises the criteria Post COVID-19 condition occurs in individuals with a history
- [NICE roundtable meeting - Agenda](https://www.meresearch.org.uk/nice-roundtable-meeting-agenda/) - Ahead of the roundtable meeting on 18 October, NICE has today (12 October 2021) released details of the agenda and how the meeting will be run. 12 October 2021 Publication of the NICE guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) was paused after several professional organisations contacted NICE
- [House of Lords question on NICE](https://www.meresearch.org.uk/house-of-lords-question-on-nice/) - As NICE's 'pause' in publishing the replacement guideline on the diagnosis and management of ME/CFS approaches 2 month in duration, Baroness Thornton raised the matter in the House of Lords on 12 October 2021. To ask Her Majesty’s Government, further to the decision to delay the planned new guidelines on the diagnosis and management of
- [Forward-ME Group statement on roundtable NICE meeting](https://www.meresearch.org.uk/forward-me-group-statement-on-roundtable-nice-meeting/) - Forward ME and our members want to thank the many people with ME, Doctors and researchers who have contacted us to share concerns and frustrations around the delays to publication of the new NICE guidelines on ME. Forward-ME has been invited to the round table, and the following organisations will also attend individually: ME Association,
- [Charities announce new project](https://www.meresearch.org.uk/charities-announce-new-project/) - On International ME Awareness Day 2021 (12th May), ME Research UK with the financial support of The Gordon Parish Charitable Trust (SCIO Charity no SC045752) announced a £400,000 joint initiative to fund biomedical research into the role of viruses in ME/CFS globally. Many people affected by ME/CFS report that their symptoms began after a viral
- [New Dialogues video](https://www.meresearch.org.uk/new-dialogues-video/) - Natalie Boulton has released a new video as part of Dialogues for a Neglected Illness, her series covering different aspects of ME/CFS. This video serves as a prologue to the series, and highlights post-exertional malaise, the risks of Graded Exercise Therapy, and the new NICE guideline. Watch it here
- [Virgin Money Giving - Closing](https://www.meresearch.org.uk/virgin-money-giving-closing/) - In a surprise move, Virgin Money Giving has today (26th August 2021) announced it is to close on 30th November 2021. Many supporters use Virgin Money Giving either to donate regularly to ME Research UK or as a fundraising platform for events. Supporters and fundraisers will require to make alternative arrangements to ensure continuity of
- [NICE Guideline - 11th hour delay](https://www.meresearch.org.uk/nice-guideline-11th-hour-delay/) - In what must surely be a highly unusual step, NICE this afternoon issued a statement to say that tomorrow's release of the new ME/CFS guideline, merely hours before its anticipated release. MEDIA STATEMENT NICE pauses publication of updated guideline on diagnosis and management of ME/CFS NICE has today (17 August 2021) taken the decision to
- [Fundraising Focus - September 2021](https://www.meresearch.org.uk/fundraising-focus-september-2021/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Big Give – Charity Champion](https://www.meresearch.org.uk/big-give-charity-champion/) - Thanks to the support of our Pledgers, who have pledged a total of £1900, we are not only able to take part in this year's Big Give Christmas Challenge but we have been matched with a Charity Champion. The Charity Champion will also pledge £1900 How does is work? Donations made on ME Research UK's
- [NICE Roundtable - 18th October 2021](https://www.meresearch.org.uk/nice-roundtable-18th-october-2021/) - NICE has announced the date of the roundtable discussion with stakeholders neccessitated by their decision to 'pause' publication of the new ME/CFS guideline which was due to be published on 18th August 2021. The roundtable meeting to discuss the updated guideline on the diagnosis and management of ME/CFS will be held on October 18th in
- [New studies published](https://www.meresearch.org.uk/new-studies-published/) - Two new papers have recently been published from research funded by ME Research UK. Firstly, a multinational group of researchers – including three currently supported by the charity – have reported the results of herpesvirus testing in blood samples from people with ME/CFS, investigating associations between different viruses and the disease. Learn more Secondly, Elisha
- [ME Research UK - Letter to NICE](https://www.meresearch.org.uk/me-research-uk-letter-to-nice/) - ME Research UK has joined many members of Forward-ME in adding its signature to a letter to NICE in advance of a round-table meeting following the unprecedented decision by NICE to pause the publication of the new ME/CFS guideline. Dear Professor Leng, The National Institute for Health and Care Excellence (NICE) is charged with creating evidence-based clinical
- [Forward-ME Statement concerning NICE Sept 2021 meeting](https://www.meresearch.org.uk/forward-me-statement-concerning-nice-sept-2021-meeeting/) - Following upon NICE's announcement of an independently chaired meeting to discuss progress on publication of the guideline on diagnosis and management of ME/CFS, the Forward-ME group has issued the following statement - Forward-ME have now had a number of direct communications with NICE regarding the delay, in which we have shared the concerns of the
- [NICE Roundtable meeting - New Date](https://www.meresearch.org.uk/nice-roundtable-meeting-new-date/) - NICE have amended their initial notification of a meeting with stakeholders to discuss the 'pausing' of the ME/CFS guideline's publication. The following is the updated release from NICE's website - Following the pause to the publication of the guideline NICE has today, 27 August 2021, announced that it is to hold a roundtable event to
- [Scottish Parliament Petition](https://www.meresearch.org.uk/scottish-parliament-petition/) - On 26th August 2020, the Petitions Committee of the Scottish Parliament closed the petition process and praised the petitioner for raising the issues affecting those with M.E. with parlaiment. The petition, having been previously considered by the committee at its meeting on 19 December 2019, when it took evidence from the Cabinet Secretary for Health
- [Fundraising Focus - August 2021](https://www.meresearch.org.uk/fundraising-focus-august-2021/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Forward-ME Statement on NICE guideline delay](https://www.meresearch.org.uk/forward-me-statement-on-nice-guideline-delay/) - ME CHARITIES BAFFLED BY DELAY TO NICE GUIDELINE Statement on the delay to publication of the NICE Guidelines on diagnosis and management of ME On Behalf of: Forward ME, Action for ME, ME Association, Doctors for ME, and ME Research UK. We are shocked and hugely disappointed to hear that the long-awaited NICE guidelines have
- [NICE guideline Update - Meeting Announced](https://www.meresearch.org.uk/nice-guideline-upadte-meeting-announced/) - Statement received by stakeholders today 27th August 2021 NICE announces next steps for ME/CFS guideline NICE recognises the importance to patients of the updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) and is keen to move forwards as quickly as possible. Following the pause to the publication of
- [The Big Give - The Big Thank You](https://www.meresearch.org.uk/the-big-give-the-big-thank-you/) - To all our Pledgers - a huge thank you. ME Research UK has reached its target of £1000 in pledges. This means that we can take part in 2021's Big Give Charity Challenge which runs from noon 30th November 2021 – noon 7th December 2021. However, as The Big Give have extended their deadline to
- [Big Give Christmas Challenge 2021](https://www.meresearch.org.uk/big-give-christmas-challenge-2021/) - Last year, ME Research UK participated in The Big Give Christmas Challenge for the first time raising much-needed funds to invest in ME research globally. This year we would like to increase the amount of research we can fund by raising more funds through The Big Give. The first step is to ask supporters to
- [KiltWalk 2021](https://www.meresearch.org.uk/kiltwalk-2021/) - Back after COVID-19 enforced absence is Scotland's KiltWalk 2021 which will take place in Glasgow on Sunday 26th September 2021. Thanks to the generosity of Sir Tom Hunter, eligible sponsorship will receive an additional 50% top up (maximum of £5,000 per walker or donor) from The Hunter Foundation after the Kiltwalk fundraising deadline of midnight
- [New research project](https://www.meresearch.org.uk/new-research-project/) - We are delighted to announce that ME Research UK has awarded funding to Dr Sarah Annesley and Prof. Paul Fisher at La Trobe University in Melbourne, Australia, for their new study looking at mitochondrial dysfunction in ME/CFS. Since a profound lack of energy is such a common experience of people with ME/CFS, it seems likely
- [Our current projects](https://www.meresearch.org.uk/our-current-projects/) - Our call for grant applications focused on the viral causes of ME/CFS closed last Friday. We are delighted to have received six high-quality proposals from around the world, and we are also currently looking at three applications for PhD funding. Two newly funded projects are starting this month, while we have another ten ongoing studies,
- [Fundraising Focus - July 2021](https://www.meresearch.org.uk/fundraising-focus-july-2021/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [BBC Panorama - Long Covid: Will I Ever Get Better?](https://www.meresearch.org.uk/bbc-panorama-long-covid-will-i-ever-get-better/) - BBC's 'Panorama' programme, 'Long Covid: Will I Ever Get Better?' aired on BBC One on 12th July 2021 and is available for 11 months on BBC iPlayer (UK only). The Guardian amongst other newspapers covering the story but concentrating on the hope for a diagnostic blood test. The programme centred on BBC journalist Lucy Adams'
- [enewsletter - 1st July 2021](https://www.meresearch.org.uk/enewsletter-1st-july-2021/)
- [The BMJ - Rapid Response](https://www.meresearch.org.uk/the-bmj-rapid-response/) - An article was published on 24th June 2021 in BMJ's Opinion section by Melanie Newman, a freelance journalist. The article, titled CFS and Long Covid: Moving beyond the controversy, discusses the role of exercise for those experiencing long-COVID, and comments that this issue has re-polarised approaches to treatment and rehabilitation, referencing the controversies arising over
- [Fundraising Focus - June 2021](https://www.meresearch.org.uk/fundraising-focus-june-2021/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [ME/CFS Priority Setting Partnership](https://www.meresearch.org.uk/me-cfs-priority-setting-partnership/) - As supporters will know from previous ME Research UK news a major project is looking for your input to decide which ME/CFS research you think should be funded in the future. However, there's only two weeks remaining to send in your research ideas - your responses must be submitted by Monday 5th July 2021. A
- [Mitochondria – An overview of structure and function](https://www.meresearch.org.uk/mitochondria-overview/) - Dr Eleanor Roberts Mitochondria are small organelles found in large quantities in almost all cells of the body. They are thought to have once been independent entities that joined forces with our single-celled ancestors as each organism was advantageous to the other. This is suspected as mitochondria have their own DNA and can, independently from
- [Mitochondria and CFS](https://www.meresearch.org.uk/mitochondria-and-cfs/) - Dr Eleanor Roberts Our previous article discussed mitochondria structure, function and metabolism; here we put some of that knowledge into the context of ME/CFS. As anyone with ME/CFS can testify, the reason you can’t lift, push or carry the things you once lifted, pushed or carried with ease is because your muscles seem drained of
- [Wiped out. Energy and the mitochondria in ME/CFS](https://www.meresearch.org.uk/wiped-out/) - Dr Eleanor Roberts explores the processes by which our body generates energy, and how these may be disrupted in people with ME/CFS. As anyone with ME/CFS can testify, the reason why people with the illness can’t do many everyday activities with the same ease with which they used to is that their muscles seem drained
- [Fundraising Focus - May 2021](https://www.meresearch.org.uk/fundraising-focus-may-2021/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Big Give 2020 - Christmas Challenge](https://www.meresearch.org.uk/big-give-2020-christmas-challenge/) - For the first time, ME Research will be taking part in the Big Give's Christmas Challenge. Billed as the UK's biggest match funding campaign it runs for one week only from noon 1st December to noon 8th December. Thanks to the generosity of our Pledgers, the first £300 donated during the campaign will be doubled
- [Save the Date - Kiltwalk 2021](https://www.meresearch.org.uk/save-the-date-kiltwalk-2021/) - With all four of 2020's Kiltwalks cancelled in Glasgow, Aberdeen, Dundee and Edinburgh and uncertainties surrounding the possibilty of massed events this year, Kiltwalk has announced a “Save the Date” for Scotland’s Virtual Kiltwalk Weekend in April 2021 and is now booking participants. The new event will take place from Friday April 23 to Sunday
- [Fundraising Focus - February](https://www.meresearch.org.uk/fundraising-focus-february/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Fundraising Focus - March 2021](https://www.meresearch.org.uk/fundraising-focus-march-2021/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Captain Tom 100 Challenge](https://www.meresearch.org.uk/captain-tom-100-challenge/) - A new fundraising initiative over Captain Tom’s birthday weekend of Friday 30 April (what would have been Captain Tom's 101st birthday) to Bank Holiday Monday 3 May has been launched to celebrate Captain Sir Tom's life and amazing achievements. Captain Tom 100 invites people all over the world to take on a challengebased around the
- [June Vote - Discount Promocodes](https://www.meresearch.org.uk/june-vote-discount-promocodes/) - Supporters may remember that last May, ME Research UK took part in the monthly charity poll on My Favourite Voucher Codes. We came in first place, winning a donation of over £200. This June, we are delighted to have been invited to take part in the charity poll on their sister site, Discount Promo Codes,
- [Countess of Mar - Early Day Motion](https://www.meresearch.org.uk/countess-of-mar-early-day-motion/) - Sponsored by MP and Chair of the All-Party Parliamentary Group on ME, Carol Monaghan, an Early Day Motion has been tabled at the House of Commons to mark the stepping aside of Margaret, Countess of Mar from her chairmanship of the Forward-ME Group. That this House marks the retirement of the Countess of Mar as
- [U.S. COVID-19 Long Haulers Bill](https://www.meresearch.org.uk/u-s-covid-19-long-haulers-bill/) - In May 2020, a Bill was introduced into the US Congress (H.R. 5057) by Representative Jaime Raskin calling for “the expansion, intensification, and coordination of the programs and activities of the National Institutes of Health with respect to post-viral chronic neuroimmune diseases, specifically myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), to support the COVID–19 response, and for
- [Forward-ME Group - 12th May 2021 Meeting Minutes](https://www.meresearch.org.uk/forward-me-group-12th-may-2021-meeting-minutes/) - The Minutes from the International ME Awareness Day meeting are now available on Forward-ME's website. ME Research UK was represented by Jonathan Davies (Chair), Mrs Sue Waddle (Vice Chair), and Trustee Mrs Lesley Carr. Amongst topics discussed were Steering Group Minutes and concerns over representation. Steering Group - Aims, Goals and Objectives CMRC/Patient Advisory Group
- [Viruses and M.E. - Research Call](https://www.meresearch.org.uk/viruses-and-m-e-research-call/) - To coincide with International ME Awareness Day 2021 (12th May), ME Research UK with the financial support of The Gordon Parish Charitable Trust (SCIO Charity no SC045752) announced a £400,000 joint initiative to fund biomedical research into the role of viruses in ME/CFS globally. The research Call has been highlighted in the press with an
- [Viruses make a comeback](https://www.meresearch.org.uk/viruses-make-a-comeback/) - Following our recent call for grant applications on the viral causes of ME/CFS, Cort Johnson from the Health Rising blog takes a look at some of the existing research investigating links between viruses and the illness. From Epstein-Barr virus to XMRV, and now to the coronavirus, it seems there’s no escaping viruses in ME/CFS. It wasn’t all
- [Research volunteers needed in Oxford](https://www.meresearch.org.uk/research-volunteers-needed-in-oxford/) - Dr Sanjay Kumar at Oxford Brookes University is looking for people with ME to take part in his ME Research UK-funded study investigating sensory processing and cognitive function. If you live in the Oxford area and would like more information, please contact Alfred Veldhuis at aveldhuis@brookes.ac.uk, who is the researcher working on the project.
- [Increased microRNAs indicate endothelial dysfunction](https://www.meresearch.org.uk/increased-micrornas-indicate-endothelial-dysfunction/) - Dr Francisco Westermeier and colleagues at FH Joanneum University of Applied Sciences in Austria have just published the first paper from their ME Research UK-funded work looking at altered endothelial function in ME/CFS. We have put up a brief summary of their findings, and there will be a more detailed explanation soon. Learn more here
- [An overview of our currently funded projects](https://www.meresearch.org.uk/an-overview-of-our-currently-funded-projects/)
- [Breakthrough Spring 2021](https://www.meresearch.org.uk/breakthrough-spring-2021/) - The Spring 2021 issue of Breakthrough magazine is now available online. Download a pdf or read it online. This issue includes ME Research UK-funded research on potential biomarkers for ME/CFS based on viral infections; a review of large ME/CFS studies; research bites; and much more. The magazine is free to patients and their families, clinics, academics, and research
- [Team Run for M.E. 2021](https://www.meresearch.org.uk/team-run-for-m-e-2021/) - ME Research UK is grateful once more to be chosen as one of the featured charities for 2021’s Walk for ME scheme. Covid-19 restrictions permitting and adhering to all social distancing and health advice, the initiative is most popular around ME Awareness Week. Walk for ME began in 2013 with the founders hoping that healthy family and friends
- [Calling all researchers](https://www.meresearch.org.uk/calling-all-researchers-2/) - ME Research UK, with the financial support of The Gordon Parish Charitable Trust, is pleased to an announce an open call for applications from researchers wishing to investigate the viral causes of ME/CFS. For this latest phase of funding, a total of £200,000 is available to support scientifically robust biomedical research studies at appropriate host
- [International ME Awareness Day](https://www.meresearch.org.uk/international-me-awareness-day/) - 12th May is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) International Awareness Day. On this important day, organisations and individuals recognise and support the millions of people world-wide who are affected by ME/CFS and other chronic immunological and neurologic diseases by raising public awareness. In fact, 12th May is International Awareness Day for Chronic Immunological and Neurological
- [ME Awareness Week: Another new project](https://www.meresearch.org.uk/me-awareness-week-another-new-project/) - We are delighted to announce that ME Research UK has awarded funding to Mr James Allison at Newcastle University for his new study exploring pain and autonomic dysfunction in ME/CFS and temporomandibular disorders (TMDs). Widespread pain affecting the muscles and joints is a significant problem for people with ME/CFS, and has a huge impact on
- [ME Awareness Week: New project announcement](https://www.meresearch.org.uk/me-awareness-week-new-project-announcement/) - We are delighted to announce that ME Research UK has awarded funding to Dr Leighton Barnden at Griffith University in Queensland, Australia for his new study investigating brain-stem dysfunction in ME/CFS. Many of the symptoms experienced by people with ME/CFS – including problems with concentration, memory, vision and heart-rate control – suggest abnormalities in the
- [In the balance. Immune-system research in ME/CFS part 2](https://www.meresearch.org.uk/immune-system-research-2/) - Here is the second part of Dr Eleanor Roberts’ article looking at ways in which the immune system may be disrupted in ME/CFS. Click here for part 1, and click here for Eleanor’s introduction to the immune system. ‘Leaky gut’ For some people with ME/CFS, their symptoms may be due to changes in the different
- [Derek Peters - an Appreciation](https://www.meresearch.org.uk/derek-peters-an-appreciation/) - It is with much sadness that ME Research UK learned of the death of Derek Peters on 15th April 2021. Derek O’Brien Peters was born in 1932 in East Belfast, the younger of two children, to Richard Peters, (a Police Sergeant) and Eileen O’Brien Paisley. He enjoyed a long involvement in progressive politics, taking part
- [In the balance. Immune-system research in ME/CFS part 1](https://www.meresearch.org.uk/immune-system-research-1/) - Following her introduction last week, Dr Eleanor Roberts now takes a look at some of the ways in which the immune system may be disrupted in ME/CFS. Have a look back at her previous article for a reminder of some of the cells and processes discussed here. While there is evidence that the immune system
- [James Lind - ME/CFS Priority Setting Partnership](https://www.meresearch.org.uk/james-lind-me-cfs-priority-setting-partnership/) - Priority Setting Partnerships (PSPs) enable clinicians, patients and carers to work together to identify and prioritise evidence uncertainties in particular areas of health and care that could be answered by research. To harness the opportunities offered by this process a ME/CFS PSP has been established. One aspect of the process is to gather the views
- [In the balance. An introduction to the immune system](https://www.meresearch.org.uk/in-the-balance-an-introduction-to-the-immune-system/) - The purpose of our immune system is to protect the body from invading infectious agents such as viruses and bacteria (called ‘pathogens’). But there is a fine balance between providing this protection without overreacting and causing harm. The immune system is unbalanced in diseases such as rheumatoid arthritis and multiple sclerosis, and this is also
- [Dr Ian Gibson - 1938-2021](https://www.meresearch.org.uk/dr-ian-gibson-1938-2021/) - The death has been announced of Dr Gibson - a working scientist who, prior to being elected as Labour MP for Norwich North in 1997, was Dean of Biology at East Anglia. He will be remembered primarily by the ME community for his establishment and leadership of the Group on Scientific Research into ME (Gibson
- [Countess of Mar - Statement](https://www.meresearch.org.uk/countess-of-mar-statement/) - Stepping aside. It is nearly 13 years since Forward-ME was founded with a core group of nine ME charities and support groups. We now have more than 17 charities and associate members. The whole scenario has changed considerably since those early days. Despair has gradually turned to hope. There is more public understanding of ME
- [Letter - The Guardian - re Graded Exercise Therapy and long-COVID](https://www.meresearch.org.uk/letter-the-guardian-re-graded-exercise-therapy-and-long-covid/) - The Guardian’s letter page (11th March 2021) carried a call from Dr Alastair Miller, Prof Paul Garner and Prof Peter White, advocating Graded Exercise Therapy under the heading that ‘those with post-Covid fatigue syndrome should not be discouraged from trying it’. The writers stated that “… we do not know that graded exercise therapy is
- [Updated NICE Guideline on ME/CFS Delayed](https://www.meresearch.org.uk/updated-nice-guideline-on-me-cfs-delayed/) - On 29th March 2021 stakeholders received the following e-mail from NICE's Senior Guideline Co-ordinator The review of the 2007 clinical guideline "Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management" (CG53) has been beset with delays - some being attributed to staff redeployment due to COVID and others to the volume of evidence subitted and
- [All in your head? Brain research funded by ME Research UK](https://www.meresearch.org.uk/funded-brain-research/) - Prof. Jarred Younger Dr Sarah Knight Prof. Julia Newton Dr Sanjay Kumar Prof. Jo Nijs Prof. Basant Puri
- [All in your head? Brain research in ME/CFS](https://www.meresearch.org.uk/brain-research-in-me-cfs/) - Following last week’s introduction to the brain, here is an overview of some of the brain research conducted in ME/CFS in recent years, and how it has helped us understand more about the illness. The World Health Organisation has classified ME/CFS as a neurological disease, and brain inflammation has long been hypothesised as a potential
- [All in your head? An introduction to the brain](https://www.meresearch.org.uk/introduction-to-the-brain/) - This month, our research posts will be focusing on the brain and nervous system in ME/CFS – helping to shine a spotlight on research happening around the world, including projects that ME Research UK has helped support. First, here’s an introduction to the brain and some of the techniques used to study it. For decades,
- [Resetting ME/CFS with epigenetics? Part 2](https://www.meresearch.org.uk/resetting-me-cfs-with-epigenetics-part-2/) - As we continue to look at epigenetics and how it might be relevant in ME/CFS, here is part 2 of Cort Johnson’s article on this area in which he talks about some of the research funded by ME Research UK. Read part 1 here. Cort writes the excellent Health Rising blog on ME/CFS research news. Last week, we
- [Resetting ME/CFS with epigenetics? Part 1](https://www.meresearch.org.uk/resetting-me-cfs-with-epigenetics-part-1/) - This month at ME Research UK we are focusing on the exciting world of epigenetics, ahead of a new study announcement in a couple of weeks. To kick off, here is the first part of an article by Cort Johnson, who writes the excellent Health Rising blog on ME/CFS research news. Here, Cort introduces the
- [Forward-ME Group - COVID-19 vaccinations](https://www.meresearch.org.uk/forward-me-group-advive-on-covid-19-vaccinations/) - No-one at ME Research UK is medically qualified and any concerns which a person with ME may have concerning vaccination against COVID-19 ought to be discussed with their GP. Forward-ME Group (of which ME Research UK is a member) has asked its members to publicise the following statement - The 25% M.E. Group, Action for
- [Forward-ME Group Meeting - Minutes 26th November 2020](https://www.meresearch.org.uk/forward-me-group-meeting-minutes-26th-november-2020/) - Present: Margaret Mar (MM), Tony Crouch, Janice Kent, Paul Worthley, Nina Muirhead, Sue Waddle, Christine Harrison, Sam Bromiley, Susan Henson-Amphlett, Simon Chandler, Natalie Hilliard, Helen Winning, Willy Weir, Louise Crozier, Carol Monaghan, Jon Davies, Janice Johnson and Charles Shepherd Apologies: Nigel Speight and Debbie Burgess 1: Welcome and introductions: MM welcomed all to the meeting. 2: Minutes and actions from the
- [January 2021 - Covid Restrictions](https://www.meresearch.org.uk/january-2021-covid-restrictions/) - From Tuesday 5th January 2021, ME Research UK’s staff will be working remotley given Scottish Government restrictions mandating that non-essential travel end. We will continue to answer emails (contact@meresearch.org.uk); interact via Facebook; update our website and work with our researchers worldwide but we will not be available to answer telephone calls or respond to letters
- [Videos on pain and hypersensitivity](https://www.meresearch.org.uk/videos-on-pain-and-hypersensitivity/) - Natalie Boulton's latest two videos have recently been added to Dialogues for a Neglected Illness, her series covering different aspects of ME/CFS. The new videos discuss patients' experiences of pain and hypersensitivity. Watch them here
- [Looking back at 2020](https://www.meresearch.org.uk/looking-back-at-2020/) - Despite the many disruptions to normal life in 2020, it was a busy year for ME Research UK. We were delighted to receive a record number of applications for research funding from dedicated scientists eager to understand more about ME/CFS, and ultimately how to help people with the disease. Several of these applications are currently
- [Forward-ME Group Statement on interim use of Graded Exercise Therapy (GET)](https://www.meresearch.org.uk/forward-me-group-statement-on-interim-use-of-graded-exercise-therapy-get/) - The Forward-ME Group (of which ME Research UK is a member) has issued a statement on the continued use of GET for those diagnosed with ME/CFS. The new NICE guideline (due to come into force in April 2021) will, as long as key recommendations are not altered, no longer offer GET as a 'treatment' for
- [Energy production in muscle cells](https://www.meresearch.org.uk/energy-production-in-muscle-cells/) - Cara Tomas and colleagues have recently published the latest results from their ME Research UK-funded study exploring the metabolic abnormalities in muscle cells from people with ME/CFS. This latest exciting research looks at the cells' ability to use glucose in the production of energy. Read more here
- [More new videos from Natalie Boulton](https://www.meresearch.org.uk/more-new-videos-from-natalie-boulton/) - Dialogues for a Neglected Illness, Natalie Boulton's excellent series of videos covering different aspects of ME/CFS, gained three more videos this week. The new videos cover post-exertional malaise and cognitive impairment, from the point of view of patients themselves, as well as pacing as part of activity management. Watch them here
- [E-newsletter 23rd November 2020](https://www.meresearch.org.uk/e-newsletter-23rd-november-2020/) - Christmas cards Our Christmas cards are selling out fast, but most designs are still available. You can purchase via our online shop (if you're in the UK, Isle of Man or Channel Islands), or by phone or post via our website. Order now and support our work to inform, influence and invest in ME research. easyfundraising
- [New videos on ME patients' experiences](https://www.meresearch.org.uk/new-videos-on-me-patients-experiences/) - Natalie Boulton has added two new videos to her project Dialogues for a Neglected Illness, her series of videos covering different aspects of ME/CFS from a variety of perspectives. The new videos feature ME patients' own accounts of their experiences, including symptoms and how the disease starts. Watch them here
- [Forward-ME Group - Position Statement re Spinal Surgery](https://www.meresearch.org.uk/forward-me-group-position-statement-re-spinal-surgery/) - Forward-ME is aware that radical surgery to address assumed spinal pathologies in patients with ME has become a topic of interest for some in the patient community. The lack of biomedical research means that little is known about ME and possible subsets of the condition. Forward-ME's position therefore is that we advocate for biomedical research
- [Forward-ME Group Meeting Minutes - 9th September 2020](https://www.meresearch.org.uk/forward-me-group-meeting-minutes-9th-september-2020/) - Full Minutes from the Forward-ME Group's virtual meeting on 9th September are now available. For ease, we provide particular points of interest from the latest Group Minutes. These points are not summaries of the entire area under discussion and ought not to be viewed as such. The exclusion of points raised or details discussions arising
- [NICE Guideline Update - Press Release](https://www.meresearch.org.uk/nice-guideline-update-press-release/) - NICE draft guidance addresses the continuing debate about the best approach to the diagnosis and management of ME/CFS NICE has today (10 November 2020) published its draft updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS). It covers the identification and assessment of ME/CFS before and after diagnosis, its
- [12 Days of Giving - vote today](https://www.meresearch.org.uk/12-days-of-giving-vote-today/) - Ecclesiastical Insurance will be giving 120 different charities an early Christmas gift of a £1,000 donation, with 10 winners announced each weekday from 7 to 22 December. It’s quick, easy and free to nominate ME Research UK online. Nominations are now open but close on 21 December. Winners will be drawn at random and the
- [Breakthrough Autumn 2020](https://www.meresearch.org.uk/breakthrough-autumn-2020/) - The Autumn 2020 issue of Breakthrough magazine is now available online. Download a pdf or read it online. This twentieth anniversary issue includes ME Research UK-funded research on muscle metabolism, and epigenetic alterations and pain; a review of exercise research by Cort Johnson; an appreciation of the Countess of Mar; and much more. The magazine is free to
- [Research and PhD funding](https://www.meresearch.org.uk/research-and-phd-funding/) - ME Research UK is pleased to announce a worldwide call for applications from researchers wishing to investigate the causes, consequences and treatment of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). ME/CFS is a debilitating neurological disease, impacting several systems throughout the body, including the autonomic, neuroendocrine, immune and central nervous system. The majority of cases
- [Epigenetic changes in pain and post-exertional malaise](https://www.meresearch.org.uk/epigenetic-changes-in-pain-and-post-exertional-malaise/) - ME Research UK is delighted to announce that we have approved funding to Prof. Jo Nijs at Vrije Univeristeit Brussel and Prof. Lode Godderis at the University of Leuven for a new research project investigating the role of epigenetic changes to BDNF and HDACs in the pain and post-exertional malaise experienced by people with ME/CFS.
- [Forward-ME Group - Graded exercise therapy for ME/CFS and COVID-19](https://www.meresearch.org.uk/forward-me-group-graded-exercise-therapy-for-me-cfs-and-covid-19/) - As ME Research UK reported, concerns had been raised over the broad-based advice given by some healthcare professionals to those with longer-term symptoms arising from COVID-19 – in particular fatigue – and recommendations anecdotally being given to increase exercise to aid recovery. The need for clarification was all the more pressing in that Covid-19 ‘long-haulers’
- [Management of post COVID-19 fatigue](https://www.meresearch.org.uk/management-of-post-covid-19-fatigue/) - ME/CFS NICE guideline review committee members and others (including ME Research UK Patron and Chairman of Forward-ME Group, the Countess of Mar) have written an open letter to NICE expressing their concerns over the broad-based advice given by some healthcare professionals to those with longer-term symptoms arising from COVID-19 - in particular fatigue - and
- [NICE draft guideline on pain and application to ME/CFS](https://www.meresearch.org.uk/nice-draft-guideline-on-pain-and-application-to-me-cfs/) - Concerns have been raised over the possible application of certain provisions within the draft NICE guideline for ‘Chronic Pain Assessment and Management’ to people whose diagnosis of ME/CFS has yet to been confirmed. The guideline is aimed primarily at those experiencing chronic primary pain – i.e. pain that is not linked to an underlying medical condition and so,
- [Forward-ME call to NICE](https://www.meresearch.org.uk/forward-me-call-to-nice/) - Building upon previous submissions to NICE in connection with NICE's on-going ME/CFS Guideline review which included the ME Research UK and ME Association-funded patient survey on the efficacy and effects of Graded Exercise Therapy and Cognitive Behavioural Therapy, the Forward-ME Group have contacted NICE as follows: As charities supporting people with M.E. we have been
- [Forward-ME Group's open letter concerning GET & COVID-19](https://www.meresearch.org.uk/forward-me-groups-open-letter-concerning-get-covid-19/) - In response to current COVID-19 events and the potential uptake and use of graded exercise therapy (GET) by 'long-haulers' – either advised by healthcare professionals or self-administered – Forward-ME has issued an open letter to clinicians and allied healthcare professionals urging against the use of GET in light of possible adverse outcomes, and highlighting NICE's
- [IACFS/ME Conference 2020](https://www.meresearch.org.uk/iacfs-me-conference-2020-science-engagement-directors-report/) - A report by Dr Louise Crozier, our Science and Engagement Director. The 13th international scientific conference of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) was held on August 21st by Zoom, having been postponed from being held in Stony Brook University in June due to COVID-19. Seventeen oral presentations were given over five
- [Forward-ME survey on patients' experiences of CBT and GET](https://www.meresearch.org.uk/cbt-and-get-survey/) - In January 2019, Forward-ME launched a survey to gather evidence on patients' experiences of Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET), to feed into the ongoing Guideline review being undertaken by NICE. As part of this process, Forward-ME welcomed the opportunity to ensure that the views of patients were taken into account at
- [Severe ME – what do we know?](https://www.meresearch.org.uk/severe-me-the-facts/) - Ignored and invisible! When the authors of the Chief Medical Officer’s report coined that phrase in 2002 they were referring to the exclusion of the most severely ill people with ME from community and social care provision. But the same description also holds true for mainstream scientific research. The scientific literature on ME and CFS contains
- [Forward-ME Group Minutes - 10th July 2020](https://www.meresearch.org.uk/forward-me-group-minutes-10th-july-2020/) - Minutes of the Meeting held via Zoom, FRIDAY 10 JULY 2020 at 2.00 pm PRESENT: Countess of Mar, Chairman; Carol Monaghan, Deputy Chairman; Catherine Frazer, Assistant to Carol Monaghan; Suzie Henson-Amphlett, Tony Crouch and Debbie Burgess,Tymes Trust; Sue Waddle, Jonathan Davies and Dr Louise Crozier, ME Research UK; Helen Winning, ME Trust; Dr Charles Shepherd
- [The Countess of Mar - an Appreciation](https://www.meresearch.org.uk/the-countess-of-mar-an-appreciation/) - From 1st May 2020, when the Countess of Mar retires officially from the House of Lords after almost 45 years’ service, the ME community will be losing a champion of the first rank and a redoubtable campaigner for acceptance of the illness, for research and for the proper treatment from government and the NHS of
- [The assessment of post-exertional malaise](https://www.meresearch.org.uk/assessment-of-pem/) - Many people with ME/CFS would consider that their most significant problem is post-exertional malaise (PEM) – that worsening of symptoms that follows even minimal physical (and sometimes mental) effort. Although PEM is included in existing case definitions for ME and CFS – such as the Fukuda and Canadian Consensus Criteria – these documents often do
- [Forward-ME Group Letter - Science Media Group](https://www.meresearch.org.uk/forward-me-group-letter-science-media-group/) - Forward-ME Group Letter Forward-ME Group Chair, The Countess of Mar, has written on behalf of the members of the Group to the Chief Executive of the Science Media Centre asking for the SMC “to retract and replace your factsheet on CFS/ME, published on 21 March 2018”. The letter continues that the factsheet, entitled “CFS/ME –
- [Forward-ME Group Minutes - 28th March 2018](https://www.meresearch.org.uk/forward-me-group-minutes-28th-march-2018/) - Notes of Meeting Held on 28th March 2018 Present: Countess of Mar (Chairman); Carol Monaghan MP; Dr William Weir; Dr Charles Shepherd (ME Association); Jane Colby (Tymes Trust); Sarah Reed (#MEAction); and Clare Ogden (Action for ME). Apologies: Hannah Clifton, Dr Paul Worthley and Dr Gareth Tuckwell (ME Trust); Bill and Janice Kent (ReMEmber); Cath Ross and Tony
- [MEGA research website](https://www.meresearch.org.uk/mega-study/) - The ME/CFS Epidemiology and Genomics Alliance (MEGA) has constructed a new website, which went live today. It contains information on the background and aims of the MEGA project, and has a Question and Answer section (which is also pasted below). Importantly, the website also contains draft terms of reference for the Patient Advisory Group, and
- [Updated MEGA Website](https://www.meresearch.org.uk/updated-mega-website/) - The ME/CFS Epidemiology and Genomics Alliance (MEGA) has updated its website to prove a new blog on the topic 'Our latest funding application and Patient Advisory Group update' and additional Q&As have been posted. MEGA was established following a Grand Challenge workshop convened by the UK ME/CFS Research Collaborative (CMRC) in May 2016 (read the
- [“Robust biological evidence”](https://www.meresearch.org.uk/robust-evidence/) - A new scientific paper from the Center for Infection and Immunity at Columbia University's Mailman School of Public Health has revealed “distinct plasma immune signatures” in the early stages of ME/CFS. The report – which appears in the AAAS journal, Science Advances, and has Prof Ian Lipkin and Prof Nancy Klimas among its co-authors –
- [Genome-wide associations](https://www.meresearch.org.uk/genome-wide-associations/) - In human beings, a very small number of DNA gene sequences differ between individuals, and these consist largely of single nucleotide polymorphisms (SNPs, pronounced “snips”). While most SNPs are silent, others have important consequences; for instance, an HLA-DRB1 gene SNP is associated with a 3–6 fold higher risk of multiple sclerosis, and a SNP mutation
- [ME/CFS and Covid-19 Congressional Bill](https://www.meresearch.org.uk/me-cfs-and-covid-19-congressional-bill/) - In May, a Bill was introduced into the US Congress (H.R. 5057) by Representative Jaime Raskin calling for “the expansion, intensification, and coordination of the programs and activities of the National Institutes of Health with respect to post-viral chronic neuroimmune diseases, specifically myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), to support the COVID–19 response, and for other
- [EU funding - Response to resolution](https://www.meresearch.org.uk/eu-funding-response-to-resolution/) - On 17th June 2020, the European Parliament passed a Resolution which called for additional EU funding for research into ME/CFS and the prioritisation of projects focused specifically on biomedical research. As was pointed out in an earlier article - resolutions are non-binding and the decision on how to put the aims of the resolution into
- [EU Funding - Response to Commission](https://www.meresearch.org.uk/eu-funding-response-to-commission/) - The European Parliament's historic vote on 17th June 2020 urging the Commission to transform the ME research landscape was widely acclaimed as a major step forward. The problem being that a Resolution of the European Parliament is not binding and merely a request to the Commission to act. Not wishing for momentum to be lost,
- [Predicting the severity of post-exertional malaise](https://www.meresearch.org.uk/predicting-the-severity-of-post-exertional-malaise/) - Age and recurrent infections are linked to worse PEM in ME/CFS Post-exertional malaise (PEM) – the worsening of symptoms after even minor physical or mental exertion – is one of the hallmark symptoms of ME/CFS. Its severity, and how long people take to recover, can vary between individuals, so researchers in France recently attempted to
- [The Power Lines](https://www.meresearch.org.uk/the-power-lines/) - An ME Research UK-funded project looks at abnormalities in energy-producing pathways within the mitochondria in people with ME/CFS. Read more here
- [Fill Your Heart](https://www.meresearch.org.uk/fill-your-heart/) - Prof. Julia Newton’s team in Newcastle University has recently published a paper looking at BNP levels and cardiac dysfunction in patients with ME/CFS. These results are from a study, co-funded by ME Research UK, which builds on their previous findings of heart abnormalities in people with the illness. Read more here
- [The Big Hurt](https://www.meresearch.org.uk/the-big-hurt/) - Prof. Jo Nijs and colleagues in Brussels have recently published results from an ME Research UK-funded project looking at cerebral blood flow and heart rate variability, and whether they relate to pain following exercise in ME/CFS. Read more here
- [Rituximab biomarker study update](https://www.meresearch.org.uk/rituximab-biomarker-study-update/) - Negative trial results stall the search for an immunosignature Last year, we reported on a newly funded study aimed at developing a biomarker to help predict patients who will respond to treatment with rituximab. Unfortunately, this study will not now be going ahead. Rituximab is an antibody that attacks B cells and has been used
- [Exercise-induced hyperalgesia](https://www.meresearch.org.uk/exercise-induced-hyperalgesia/) - The team at Vrije Universiteit Brussels has published a new paper reporting the findings of their ME Research UK-funded study looking at the immune system during exercise-induced hyperalgesia. We'll explore these results in more detail soon. Read more here
- [Exploring an anti-citrullinated antibody signature in ME/CFS](https://www.meresearch.org.uk/exploring-an-anti-citrullinated-antibody-signature-in-me-cfs/) - ME Research UK is delighted to announce that we have approved funding to Prof. Mercedes Rincon and colleagues at the University of Vermont, for a new research project using UK ME/CFS Biobank samples to look for anti-citrullinated autoantibodies in patients with ME/CFS. Read more here
- [2017 CMRC Conference Registration Opens](https://www.meresearch.org.uk/2017-cmrc-conference-registration-opens/) - Registration is now open for the Fourth Annual CMRC Conference which will be held on Wednesday 13 and Thursday 14 September 2017 at Future Inns Cabot Circus, Bond St South, Bristol. The purpose of the conference is to increase collaboration between researchers in the CFS/ME field and with those from other research/illness areas. Although the full programme has
- [ME Research UK - Forward ME July 2019 - Main Points](https://www.meresearch.org.uk/me-research-uk-forward-me-july-2019-main-points/) - ME Research UK’s main points from Forward-ME Meeting held on 10th July 2019 and attended on our behalf by Vice Chair Sue Waddle. Medical Schools Council Nina Muirhead said she had sent a questionnaire to medical schools and more than half said they do not teach ME/CFS but most are willing to receive information on
- [Mitochondrial complex activity](https://www.meresearch.org.uk/mitochondrial-complex-activity/) - Cara Tomas and colleagues from Newcastle University have recently published a report on mitochondrial function in ME/CFS, and this study is related to research on muscle fatigue they are currently pursuing with support from ME Research UK. The mitochondria are considered the power plants of the body, generating the energy needed to support life, and
- [The end of the road for rituximab?](https://www.meresearch.org.uk/the-end-of-the-road-for-rituximab/) - We reported last year the disappointing news that preliminary results from the Norwegian randomised trial of rituximab were not showing any clinical benefit of the drug in people with ME/CFS. This was doubly disappointing for us at ME Research UK because we had recently awarded a grant to Prof. David Patrick at the University of
- [Psoriasis increases the risk of ‘CFS’](https://www.meresearch.org.uk/psoriasis-increases-the-risk-of-cfs/) - Psoriasis is a skin condition caused by an increased production of skin cells, and is thought to result from abnormalities in the immune system. It is characterised by systemic inflammation, which also affects other systems of the body, including the eyes and cardiovascular system. There is some evidence to suggest that patients with psoriasis are
- [Cognitive function in adolescents](https://www.meresearch.org.uk/cognitive-function-in-adolescents/) - A team from the Murdoch Children's Research Institute in Melbourne, Australia, have recently published the first results of their ME Research UK-funded study looking at brain function in adolescents with ME/CFS. As well as measuring the impact of mental exertion on cognitive function, they have also used MRI to assess functional connectivity. Read more here
- [ME Research UK - Forward ME May 2019 - Main points](https://www.meresearch.org.uk/me-research-uk-forward-me-may-2019-main-points/) - ME Research UK's main points from Forward-ME Meeting 8th May 2019 On NICE Guideline Review Countess of Mar said she had concerns that NICE were relying too much on old research; they should be keeping up to date with current research. Dr Willy Weir said he also had concerns because some in the medical profession
- [The impact of endometriosis on women with ME/CFS](https://www.meresearch.org.uk/impact-of-endometriosis/) - Endometriosis – the spread of endometrial tissue outside the uterus – has been reported as being a relatively common condition among women with ME/CFS. A study from researchers in Atlanta, Georgia recently looked at what, if any, impact the condition has on other characteristics of patients. Among 36 women from Wichita, Kansas, with a diagnosis
- [Investigating sensory processing and cognitive function in people with ME: a pilot study](https://www.meresearch.org.uk/investigating-sensory-processing-and-cognitive-function-in-people-with-me-a-pilot-study/) - ME Research UK is delighted to announce that we have approved funding to Drs Sanjay Kumar and Farzaneh Yazdani at Oxford Brookes University for a new research project looking at the brain abnormalities underlying sensory hyperstimulation in people with ME/CFS. Read more here
- [Role of Sirt1/NOS axis in vascular and immune homeostasis: a missing piece in the ME/CFS puzzle?](https://www.meresearch.org.uk/role-of-sirt1-nos-axis-in-vascular-and-immune-homeostasis-a-missing-piece-in-the-me-cfs-puzzle/) - ME Research UK is delighted to announce that we have approved funding to Dr Francisco Westermeier at FH Joanneum University of Applied Sciences for a new research project looking at whether nitric oxide production is altered in people with ME/CFS. Read more here
- [POTS may be an autoimmune disorder](https://www.meresearch.org.uk/pots-may-be-an-autoimmune-disorder/) - Many people with ME/CFS experience “orthostatic” symptoms when they stand up – including dizziness, altered vision, nausea and fatigue – which are caused by dysfunction of the autonomic nervous system. In fact, an ME Research UK-funded study at Newcastle University in 2013 found that 13% of patients have a condition called postural orthostatic tachycardia syndrome
- [Intra-brainstem connectivity in ME/CFS](https://www.meresearch.org.uk/intra-brainstem-connectivity-in-me-cfs/) - Earlier this year, Dr Elisha Josef and colleagues at Murdoch Children’s Research Institute in Melbourne, Australia published results from their ME Research UK-funded study looking at brain functional connectivity, cognitive symptoms and fatigue in adolescents with ME/CFS. Also interested in this area of research is another Australian group, from a bit further up the coast
- [Altered cardiac autonomic regulation](https://www.meresearch.org.uk/altered-cardiac-autonomic-regulation/) - Published in the journal, Medicine, last month was a systematic review looking at “evidence of altered cardiac autonomic regulation in ME/CFS”. Simply put, “cardiac autonomic regulation” refers to the body’s control system that acts unconsciously to regulate the functions of the heart such as heart rate. This has been a recurring topic in projects funded by
- [Breakthrough Autumn 2019](https://www.meresearch.org.uk/breakthrough-autumn-2019/) - The electronic version of our Autumn 2019 issue of Breakthrough magazine is now available online. Download a pdf or read it online. The contents include ME Research UK-funded research on brain function and connectivity, sensory processing in ME/CFS, and nitric oxide production; short items on rituximab and the retirement of Vance Spence; and many shorter ‘research bites’.
- [Natural born killers](https://www.meresearch.org.uk/natural-born-killers/) - Despite their dramatic name, natural killer (NK) cells are actually a very important part of our immune system and help protect us from viruses by killing cells that have been infected. They can also target tumour cells. There is evidence to suggest that the cytotoxicity of NK cells (that is, their ability to destroy other
- [ME/CFS Biomedical Partnership](https://www.meresearch.org.uk/biomedical-partnership-website/) - As we reported in November last year, the ME/CFS Biomedical Partnership is planning to make a grant application to the Medical Research Council and the National Institute for Health Research for funding to conduct a very large genetic study (known as a genome-wide association study) into ME/CFS early in 2020. They have set up a
- [Latest work from Ron Davis](https://www.meresearch.org.uk/latest-work-from-ron-davis/) - Last month, in his excellent blog, ME/CFS Research Review, Simon McGrath summarised some of the fascinating developments in the work of Stanford researcher, Dr Ron Davis. Dr Davis’s central hypothesis is that there is some factor in the blood plasma of ME/CFS patients that is driving their illness. Plasma is the liquid component of blood
- [Breakthrough Spring 2020](https://www.meresearch.org.uk/breakthrough-spring-2020/) - The electronic version of our Spring 2020 issue of Breakthrough magazine is now available online. Download a pdf or read it online. The contents include ME Research UK-funded research on adrenergic receptor activation; articles on a new series of videos on different aspects of ME/CFS, and the All-Party Parliamentary Group on ME; an overview of ME Research
- [The experience of living with ME/CFS](https://www.meresearch.org.uk/the-experience-of-living-with-me-cfs/) - ME Research UK is delighted to announce that we have approved funding to Prof. Julia Newton and colleagues at Newcastle University for a new research project which aims to provide a better understanding of how to involve people with severe and very severe ME/CFS in research. Read more here
- [DecodeME – the largest ever ME/CFS DNA study](https://www.meresearch.org.uk/decodeme-the-largest-ever-me-cfs-dna-study/) - A collaboration of researchers, patients and advocates today announced £3.2 million in funding for what will be the largest ever study looking at DNA changes in people with ME/CFS. The DecodeME study is being led by Prof. Chris Ponting of the MRC Human Genetics Unit at the University of Edinburgh, and jointly funded by the
- [Hemin protects against CFS-like symptoms in mice](https://www.meresearch.org.uk/hemin-protects-against-cfs-like-symptoms-in-mice/) - Porphyria therapy may have potential as a treatment in ME/CFS Derived from red blood cells, hemin is a drug sometimes used to treat the symptoms of porphyria, such as pain and increased heart rate. Researchers from India wondered whether hemin might be of some benefit in ME/CFS, and recently published the results of a study
- [COVID-19 – should we expect an increase in ME/CFS cases?](https://www.meresearch.org.uk/covid-19-and-me-cfs-cases/) - A recent review of past infectious epidemics suggests that a subgroup of COVID-19 survivors may suffer from chronic post-viral complications, including ME/CFS. There is still much we do not know about the novel coronavirus, COVID-19, but it is becoming clear that many survivors of the initial infection are now reporting longer term, post-viral complications, including
- [The Big Give](https://www.meresearch.org.uk/the-big-give/) - ME Research UK hopes to participate in the Big Give Christmas Challenge 2020, which runs from 12 p.m. on 1 December until 12 p.m. on 8 December 2020. The Christmas Challenge is a match funding campaign where donations made during the event are doubled by matching them with monies already pledged by supporters. Additional funds
- [Top 10 takeaways from Forward-ME Group Meeting on 10th July 2020](https://www.meresearch.org.uk/top-10-takeaways-from-forward-me-group-meeting-on-10th-july-2020/) - For ease, we provide particular points of interest from the latest Group Minutes. These points are not summaries of the entire area under discussion and ought not to be viewed as such. The exclusion of points raised or details discussions arising does not imply denigration of the topic but rather the pressures to condense a
- [ME Research UK - Altered working arrangements](https://www.meresearch.org.uk/me-research-uk-altered-working-arrangements/) - We understand that many supporters have been experiencing the impact of the Coronavirus, or may be starting to worry about what impact it could have on you and your family over the next few weeks. Likewise, ME Research UK, wishes to protect our staff and their families from the effects of the Cononavirus and our
- [CBT & GET - Parliamentary Question - Updated](https://www.meresearch.org.uk/cbt-get-parliamentary-question/) - Q - To ask Her Majesty's Government, further to the Written Answer by Lord O'Shaughnessy on 19 June (HL8366), what means are available for reporting and recording adverse health events resulting from non-pharmacological treatments such as graded exercise therapy or cognitive behavioural therapy on a similar basis to those for reporting adverse events to
- [European Parliament Resolution](https://www.meresearch.org.uk/european-parliament-resolution/) - In a historic vote on 17th June 2020 the European Parliament called for additional EU funding for research into ME/CFS and the prioritisation of projects focused specifically on biomedical research. The Resolution was carried by 676 votes in favour, 4 against and 8 abstentions. However, Resolutions are non-binding and how the Commission and the 27
- [European Parliamentary Debate on ME funding](https://www.meresearch.org.uk/european-parliamentary-debate-on-me-funding/) - Today, Wednesday 10 June, is exactly one week before a vote in the European Parliament on the first-ever resolution on ME/CFS. ME Research UK hopes that this historic moment will lead to a long-term commitment to invest in biomedical ME research. It is striking that €80 billion of Research and Innovation funding was made available
- [New videos on severe ME/CFS](https://www.meresearch.org.uk/new-videos-on-severe-me-cfs/) - Natalie Boulton has added two new videos to her project Dialogues for a Neglected Illness, her series of videos covering different aspects of ME/CFS from a variety of perspectives. The new videos are on the topic of severe and very severe ME/CFS, including symptoms and management. Watch them here
- [Chop for ME](https://www.meresearch.org.uk/chop-for-me/) - With the UK government encouraging those who cannot work from home and whose workplace has appropriate measures in place to counter the COVID-19 threat to return to their workplaces, a novel issue has arisen – the urgent need for a haircut. Likewise, for those of us at home – time may seem to have stood
- [Tea with me](https://www.meresearch.org.uk/tea-with-me/) - .. being kind and helping and loving people is what gives humans the greatest pleasure... Miranda Hart's 'Chamble'- 10th April 2020 During ME Awareness Week, ME Research UK normally encourages supporters to hold a fundraising and awareness raising Tea for ME event. Due shielding and social distancing requirement this will not be possible in May
- [May Competition - How to Vote](https://www.meresearch.org.uk/may-competition-how-to-vote/) - During May, ME Research UK is one of 4 charities competing to amass the most votes in the 'my favourite voucher codes' ballot. The successful charity will receive a donation of 20% of the site's profits generated during the month of May. Voting is simple Go to myfavouritevouchercodes.co.uk and select ME Research UK from the
- [Oxford Health leaflet - a United Response](https://www.meresearch.org.uk/oxford-health-leaflet-a-united-response/) - Leading ME charities, including ME Research UK, have joined in a Physios for ME led initiative which includes the All-Party Parliamentary Group on ME, the Forward-ME Group and other notable signatories in a united response to Oxford Health NHS Foundation Trust's leaflet entitled 'Coping with the Coronavirus'. Oxford Health NHS Foundation Trust offers both an
- [Dialogues for a Neglected Illness](https://www.meresearch.org.uk/dialogues-for-a-neglected-illness/) - With an award from the Wellcome Public Engagement Fund, Natalie Boulton is in the process of creating a series of videos covering different aspects of ME/CFS from a variety of perspectives. The project now has its own website, and three new videos have been uploaded in recent weeks: An Introduction to ME/CFS, and two videos
- [Letter sent to major supermarket chains and UK Government from UK ME charities and the All Party Parliamentary Group on ME](https://www.meresearch.org.uk/letter-sent-to-major-supermarket-chains-and-uk-government-from-uk-me-charities-and-the-all-party-parliamentary-group-on-me/) - We are writing on behalf of the adults, children and young people we support who have Myalgic Encephalomyelitis (M.E.) (also known as Chronic Fatigue Syndrome, or CFS), asking for your help. The Government has identified that people with chronic neurological conditions, including M.E./CFS, are at increased risk of severe illness from Coronavirus. More than one
- [APPG on ME Report - 3 March 2020](https://www.meresearch.org.uk/appg-on-me-report-3-march-2020/) - All-Party Parliamentary Group on ME: Biomedical Research Meeting Summary The All-Party Parliamentary Group (APPG) on M.E. held its' first meeting on Tuesday 3 March where biomedical research was discussed. Twenty MPs attended or sent staff to hear about the urgent need for biomedical research, following its inaugural AGM in January. Chaired by Carol Monaghan MP,
- [Calling all researchers](https://www.meresearch.org.uk/calling-all-researchers/) - ME Research UK is pleased to an announce an open call for applications from researchers wishing to investigate the causes, consequences and treatment of ME/CFS. Funding is available to support scientifically robust biomedical studies at appropriate host institutions worldwide. We are happy to consider projects in all areas related to the biology or treatment of
- [Would you like to host a PhD studentship?](https://www.meresearch.org.uk/would-you-like-to-host-a-phd-studentship/) - ME Research UK is now able to fund biomedical research PhD studentships looking at the causes, consequences and treatment of ME/CFS. In order to help encourage new researchers to embark on a career in the field, funding is available to support full or part-time PhD places at appropriate host institutions worldwide. We are happy to
- [ICD Classification](https://www.meresearch.org.uk/icd-classification/) - A revised version of the International Statistical Classification of Diseases and Related Health Problems (ICD-11) is due to be implemented in January 2022. The ICD is the diagnostic classification standard for all clinical and research purposes, and is therefore highly influential. Its many uses include identifying health trends, and monitoring and reporting diseases, resource allocation,
- [We are recruiting](https://www.meresearch.org.uk/we-are-recruiting/) - Science and Engagement Director - Full-time ME Research UK is looking for a dynamic and self-motivated individual with sound scientific and research knowledge who relishes challenges and is able to help us raise awareness of our organisation. We would like to appoint a Science and Engagement Director whose main duties would include the encouragement of
- [New video series](https://www.meresearch.org.uk/new-video-series/) - With an award from the Wellcome Public Engagement Fund, Natalie Boulton is in the process of creating a series of videos covering different aspects of ME/CFS from a variety of perspectives. These videos will be available to watch on our website as well as a number of other places, and the first two are up
- [ME/CFS Biomedical Partnership to apply for funding](https://www.meresearch.org.uk/me-cfs-biomedical-partnership-to-apply-for-funding/) - A newly established group – called the ME/CFS Biomedical Partnership – has announced that it will apply for research funding from the Medical Research Council (MRC) and the National Institute for Health Research (NIHR). Lead investigators for the Partnership are human genetics specialist Professor Chris Ponting from the University of Edinburgh and clinician Dr Luis Nacul
- [Herpesviruses revisited](https://www.meresearch.org.uk/herpesviruses-revisited/) - Herpesviruses, such as Epstein–Barr virus (EBV) or human cytomegalovirus (HCMV), were once thought to have a central role in ME/CFS, but this view now has little support. Why? Because there is not much evidence that people with the illness have high levels of viral DNA, herpesvirus antigens or immunoglobulin antibodies to herpesvirus. Despite this, a
- [Forward-ME Group Minutes 10th July 2019](https://www.meresearch.org.uk/forward-me-group-minutes-10th-july-2019/) - Minutes of the Meeting held in Residence 1, House of Lords, Wednesday 10 July 2019, 2.00 pm Present: Countess of Mar (Chairman); Bill & Janice Kent (reMEmber); Dr Nina Muirhead; Hannah Clifton (ME Trust); Christine Harrison (BRAME); Suzie Henson-Amphlett (TYMES Trust); Esperanza Moreno (ME Action); Sam Bromiley (AFME); Dr Charles Shepherd (ME Association); Dr Willy
- [Art in Aid of ME Research UK](https://www.meresearch.org.uk/art-in-aid-of-me-research-uk/) - In tribute to the memory of his best friend, Emily Gregg, the artist Mel Elston-Mendones has created art for sale inspired by Emily and in aid of ME Research UK. Emily, a happy, sociable and friendly person, was a police constable with Hampshire Constabulary, and passed away on the 17th November 2014 having been severely
- [Kiltwalk 2019](https://www.meresearch.org.uk/kiltwalk-2019/) - Kiltwalk is a unique charity that enables walkers to raise money for any Scottish charity and, as ME Research UK is based in Perth, we are eligible to participate but we need your help. Thanks to Sir Tom Hunter and the Hunter Foundation every pound raised gains a top-up of 40p. That means for every
- [Forward-ME Group Minutes 8th May 2019](https://www.meresearch.org.uk/forward-me-group-minutes-8th-may-2019/) - Minutes of the Meeting held in Residence 1, House of Lords, Wednesday 8 May 2019, 2.00 pm Present: Countess of Mar (Chairman); Dr Charles Shepherd (ME Association); Dr Willy Weir; Katherine Ladd (Researcher for Carol Monaghan MP); Bill Kent (reMEmber); Esperanza Moreno (ME Action); Sam Bromiley (AFME); Jonathan Davies & Simon Phillips (ME Research UK).
- [Breakthrough Spring 2019](https://www.meresearch.org.uk/breakthrough-spring-2019/) - The electronic version of our Spring 2019 issue of Breakthrough magazine is now available online. Download a pdf or read it online. The contents include ME Research UK-funded research on the search for anti-citrullinated antibodies, reading problems in ME/CFS, and the involvement of severely ill patients in research; short items on the parliamentary debate on
- [Retirement of Dr Vance Spence, the lamplighter](https://www.meresearch.org.uk/retirement-of-dr-vance-spence-the-lamplighter/) - Dr Vance Spence, a founding Trustee and Chairman of ME Research UK for the past 18 years, announced his retirement at the charity’s recent AGM. Although stepping back from his role as Chairman and Trustee, Vance will continue to be a member of ME Research UK’s Scientific Board, providing input and advice on the quality
- [Forward-ME Group Minutes - 13th March 2019](https://www.meresearch.org.uk/forward-me-group-minutes-13th-march-2019/) - Minutes of the Meeting held in Residence 1, House of Lords, Wednesday 13 March 2019 Present: Countess of Mar (Chairman); Carol Monaghan MP (Vice-Chairman); Hannah Clifton – Director M.E. Trust; Charles Shepherd – ME Association; Helen Dawes – Oxford Brookes University; Suzie Henson-Amphlett - Tymes Trust ; Esperanza Moreno – ME ACTION; Gareth Tuckwell –
- [Chronotropic intolerance](https://www.meresearch.org.uk/chronotropic-intolerance/) - Our heart rate normally increases when we exercise, but a new study from the University of the Pacific, in California, shows that this response is impaired in many people with ME/CFS. This phenomenon is known as chronotropic intolerance, and potentially provides further evidence of autonomic dysfunction in the illness (also seen in work by Prof.
- [Commons Debate 24 January 2019](https://www.meresearch.org.uk/commons-debate-24-january-2019/) - The rather foreshortened debate began eventually at 3.30pm and closed at 5pm on 24 January 2019 with the Motion being passed without a Division and without amendment. Regrettably, pressure of time meant that MPs were asked to limit their speeches progressively from 4 to 3 and then to 2 minutes apiece and so much useful
- [Breakthrough Autumn 2018](https://www.meresearch.org.uk/breakthrough-autumn-2018/) - The electronic version of our Autumn 2018 Breakthrough magazine is now online. Download a pdf or read it online. The contents include ME Research UK-funded research on immune cell infiltration of the brain and muscle function abnormalities in ME/CFS; short items on Sir Alex Ferguson, the CMRC conference, Forward – ME 10th anniversary and our new CEO; and
- [Background to House of Commons Debate on 24 January 2019](https://www.meresearch.org.uk/background-to-house-of-commons-debate-on-24-january-2019/) - On 30 October 2018, MPs Carol Monaghan, Nicky Morgan, Kelvin Hopkins and Stephen Pound appeared before the Backbench Business Committee seeking time for a UK House of Commons debate on ME. Their petition was supported by more than 30 MPs and the Backbench Business Committee allocated time, on 24 January 2019, for a full debate
- [CBT and GET Patient Survey](https://www.meresearch.org.uk/cbt-and-get-patient-survey/) - Forward ME has launched a survey, having been asked by the National Institute of Health and Care Excellence (NICE) to gather evidence and experiences of Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT). NICE has recently started the process of reviewing (and ultimately replacing) the guideline on M.E./CFS Diagnosis and Management. As part of
- [Forward-ME Group Minutes - 21st November 2018](https://www.meresearch.org.uk/forward-me-group-minutes-21st-november-2018/) - Minutes of the Meeting held in Residence 1, House of Lords, Wednesday 21 November 2018, 2.00 pm Introductions and Apologies. The Chairman introduced new members Suzie Henson-Amphlett, Sam Bromiley and Esperanza Moreno. Apologies had been received from Sue Waddle (MERUK), Anita Williams (TYMES), Janice Kent (reMEmber), Tony Crouch (25% Group), Dr Nigel Speight, Nina Muirhead,
- [NICE ME/CFS Guideline Committee - ME Research UK's Comment](https://www.meresearch.org.uk/nice-me-cfs-guideline-committee-me-research-uks-comment/) - ME Research UK joined other charities and those affected by ME/CFS in welcoming the long-awaited review of the NICE Guideline on ME/CFS. Given the concerns expressed by many about the scope and content of the current Guideline, this review is vitally important and ME Research UK, as a stakeholder, has submitted its views to NICE
- [Forward-ME Group 10th Anniversay Lunch](https://www.meresearch.org.uk/forward-me-group-10th-anniversay-lunch/) - Members of the Forward – ME Group marked the 10th Anniversary of its foundation at a lunch at the House of Lords on 23rd October 2018. Those attended wished to thank the founder and moving force behind the Group for all her efforts on behalf of those affected by ME/CFS. The dedication and work of
- [Fall of the Cross Party Group on ME at the Scottish Parliament](https://www.meresearch.org.uk/fall-of-the-cpg/) - The following article is the text of the Edinburgh ME Self-Help Group's article, “Fall of the Cross Party Group on ME” of 8 February 2013, formerly posted on their website Update - 15th October 2018 - The views of the events leading to the closure of the Cross Party Group written by the Tymes Trust
- [Forward-ME Group Minutes - 17th July 2018](https://www.meresearch.org.uk/forward-me-group-minutes-17th-july-2018/) - The Minutes were agreed to be a true record. NICE Guideline development The Chairman said a number of points had been raised about the NICE scoping document. She had received several suggestions from Clare Ogden and Sue Waddle. Dr Charles Shepherd had been asked whether we should use the term “encephalomyelitis” or “encephalopathy”. He suggested
- [Introducing our new CEO - Simon Phillips](https://www.meresearch.org.uk/new-ceo-simon-phillips/) - ME Research UK Board of Charity Trustees is delighted to announce the appointment of Simon Phillips as Chief Executive Officer (CEO) of the charity. Simon comes to us with a wealth of charity sector experience that complements our existing team. We are all looking forward to working with him and the team to build on
- [Breakthrough Spring 2018](https://www.meresearch.org.uk/breakthrough-spring-2018/) - The electronic version of our Spring 2018 Breakthrough magazine is now online. Download a pdf or read it online. The contents include ME Research UK-funded research on cardiac abnormalities in ME/CFS, and the role of cerebral blood flow and heart rate variability; short items on the Unrest documentary, lightning process, and and NICE guideline; and
- [Immune changes in severe ME/CFS](https://www.meresearch.org.uk/immune-changes-in-severe-mecfs/) - The immune system of ME/CFS patients has been the target of medical research for many years, and the abnormalities identified have included low natural killer cells, and increases in various types of ‘cytokines’, such as interleukins and interferons, which regulate the immune system (see a review). Some of these immune abnormalities are also shared with
- [Provision for severely ill patients](https://www.meresearch.org.uk/nhs-provision/) - “Ignored and invisible”— that’s how the Chief Medical Officer’s report described the most severely ill ME/CFS patients in 2002, and still today remarkably little is known about this severely overlooked group of people (see Severe ME – what do we know?). To examine the current situation – 12 years after the Chief Medical Officer’s report
- [Prof Julia Newton talks muscle](https://www.meresearch.org.uk/newton-talks-muscle/) - In the latest in the series of ‘Science to patients’ webinars hosted by the active Dutch organisation ME/CVS Vereniging, Prof Julia Newton of Newcastle University discusses muscle metabolism and ME/CFS. A transcript (for those who’d rather read than watch) is available below. In the past few years, Julia has received funding from ME Research UK
- [Muscle cell abnormalities](https://www.meresearch.org.uk/muscle-cell-abnormalities/) - In the historical literature, the hallmark of myalgic encephalo-myelitis (ME) was marked muscle fatigability often in response to minor degrees of exercise. Muscle cramps, fasciculations (twitching) and extreme muscle tenderness were also common findings. As Dr Melvin Ramsay said in the Postgraduate Medical Journal in 1978, “This was sometimes obvious as the patients winced even
- [Eyes: pain, sensitivity and focus](https://www.meresearch.org.uk/eyes-pain-sensitivity/) - The current edition of British Journal of Ophthalmology’s ‘online first’ carries an interesting short report from Dr Claire Hutchinson’s Vision and Language Research Group at the University of Leicester. The researchers describe using the new DePaul Symptom Questionnaire to quantify the vision-related symptoms (eye pain, sensitivity to bright lights, unable to focus vision and/or attention,
- [A rational basis for diagnosis?](https://www.meresearch.org.uk/rational-diagnosis/) - An intriguing report has just appeared in the ‘International Journal of Machine Learning and Computing’ – an unusual home for a scientific paper on ME/CFS. At first reading, it seems very complicated – the researchers from the Jason group at DePaul University in Chicago used ‘unsupervised machine learning’ (a series of statistical techniques for finding
- [Webinars by Prof Leonard Jason](https://www.meresearch.org.uk/webinars-prof-jason/) - Eight web seminars by Prof Leonard Jason, Director of the Center for Community Research at DePaul University, Chicago are now available to view, hosted by the active Dutch organisation ME info - formerly ME/CVS Vereniging. These talks are produced under the auspices of ‘Science to Patients’, which is a Dutch government subsidized project, in which
- [Experiences of ME/CFS in US & UK](https://www.meresearch.org.uk/experiences-of-in-us-uk/) - Today, there are many case definitions for ME, CFS or their combination – around 20 according to a 2014 review, and 21 if we include the new SEID definition from the Institute of Medicine. Each is different to a greater or lesser degree, and all are based on collections of non-specific symptoms shared with other
- [Shifting focus](https://www.meresearch.org.uk/shifting-focus/) - Problems with vision are relatively common among people with ME/CFS, the majority of whom report symptoms such as hypersensitivity to light, difficulties focusing, and dry eyes. But despite their significant impact on quality of life, there is still a lack of scientific research into these symptoms, and they are not included in any clinical and
- [NICE Scoping Meeting 25th May 2018](https://www.meresearch.org.uk/nice-scoping-meeting-25th-may-2018/) - On 25 May 2018, our Vice Chair, Mrs Sue Waddle attended NICE’s Scoping Meeting in London as part of the on-going process to replace the current Guideline on ME/CFS (CG53) which is due in 2020. Her personal view of the meeting is now available. The aims of the meeting were to obtain views on the
- [Can probiotics help?](https://www.meresearch.org.uk/can-probiotics-help/) - Earlier this year, ME Research UK funded a new research study led by Prof. Yan Yiannakou in Newcastle looking at changes to the immune system and gut microbiome in patients with ME/CFS and those with irritable bowel syndrome. Gastrointestinal symptoms are very common among ME/CFS patients, and can include abdominal swelling and/or pain, nausea and
- [International ME Awareness Day 2018 - WHO](https://www.meresearch.org.uk/international-me-awareness-day-2018-who/) - It is fitting that on International ME Awareness Day 2018 that The International Alliance for ME, has written to the World Health Organisation's Director-General in Geneva seeking a meeting to discuss the international response to the illness. The letter has the support of organisations (such as Forward-ME) and charities (including ME Research UK) from countries
- [Forward ME Group - Bodily Stress Syndrome](https://www.meresearch.org.uk/forward-me-group-bodily-stress-syndrome/) - The Forward-ME Group was addressed by Diane O’Leary, PhD. Visiting Fellow in Bioethics and Philosophy, Fondation Brocher, Hermance,Switzerland and Visiting Scholar in Neuroethics, Pellegrino Center for Clinical Bioethics, Georgetown University Medical Center, Washington DC. at its 28th March 2018 meeting. Dr O'Leary highlighted the forthcoming update of the World Health Organisation's 'International Classification of Diseases' guidance. This
- [Signature Move](https://www.meresearch.org.uk/signature-move/) - We are delighted to announce that ME Research UK has awarded a new research grant to Prof. David Patrick at the University of British Columbia. As a new randomised trial in Norway investigates the potential of rituximab as a treatment for ME/CFS, Prof. Patrick and his team plan to use samples from that trial in developing an immunosignature
- [Could we finally have a definitive biomarker for ME/CFS?](https://www.meresearch.org.uk/could-we-finally-have-a-definitive-biomarker-for-mecfs/) - It’s a recurring theme, but the diagnosis of ME/CFS is severely hampered by the lack of a test that can distinguish people with the illness from those without. This is a challenge in many diseases, but particularly in ME/CFS which affects so many different systems of the body. ME/CFS is currently identified by the presence
- [Forward ME Group Minutes - 7th February 2018](https://www.meresearch.org.uk/forward-me-group-minutes-7th-february-2018/) - Minutes of the meeting held in Residence 1, House of Lords, Wednesday 7 February 2018 starting 2pm Present: Countess of Mar (Chairman); Dr Charles Shepherd (ME Association); Dr William Weir; Bill Kent (reMEmber); Tony Crouch (25% Group and Tymes Trust); Sue Waddle and Jonathan Davies (ME Research UK); and Christine Harrison (BRAME). Apologies had been
- [Hyperbaric oxygen in fibromyalgia](https://www.meresearch.org.uk/hbo-in-fibromyalgia/) - Hyperbaric oxygen therapy (HBO) is a recognized treatment for deep-sea divers experiencing decompression sickness (The Bends); for carbon monoxide poisoning; and for some soft-tissue wounds. The technique involves breathing oxygen via a mask in a pressurised single- or multi-person hyperbaric chamber. In the UK today, many MS national therapy centres have hyperbaric chambers because of
- [Forward ME Group Minutes - 10th January 2018](https://www.meresearch.org.uk/forward-me-group-minutes-10th-january-2018/) - Minutes of the meeting held in Residence 2, House of Lords, Wednesday 10 January 2018 starting 2pm Present: Countess of Mar (Chairman); Dr Charles Shepherd (ME Association); Bill Kent (reMEmber); Tony Crouch (representing 25% Group); Jane Colby and Anita Williams (TYMES); Clare Ogden (AFME); Hannah Clifton and Dr Paul Worthley (ME Trust); and Dr Willy
- [NICE Guideline Review - Stakeholder Workshop Jan 2018](https://www.meresearch.org.uk/nice-guideline-review-stakeholder-workshop-jan-2018/) - On 20th September 2017, NICE announced that following a stakeholder consultation on its plan not to update the 2007 guideline ‘Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy: diagnosis and management’ (CG53), “broader issues with the guideline were highlighted that called into question the guideline scope and its current relevance. After further consideration of information from stakeholders
- [Forward ME Group Minutes - 5th December 2017](https://www.meresearch.org.uk/forward-me-group-minutes-5th-december-2017/) - Minutes of the Meeting held in Residence 2, House of Lords, Tuesday 5 December 2017, 2.00 pm Present: Countess of Mar (Chairman); Janice & Bill Kent (reMEmber); Clare Ogden (AFME); Dr Charles Shepherd (ME Association) and Tony Crouch (representing 25% Group and TYMES Trust). In attendance: Kathryn Pugh MBE, Deputy Head of Mental Health, Children
- [Breakthrough Autumn 2017](https://www.meresearch.org.uk/breakthrough-autumn-2017/) - The electronic version of our Autumn 2017 Breakthrough magazine is now online. Download a pdf or read it online. The contents include ME Research UK-funded research on the role of autoantibodies in ME/CFS, and AMPK activation; short items on the NICE guideline, treatment delivery, and our call for new trustees; and many shorter 'research bites'.
- [Forward ME Group Minutes - 31st October 2017](https://www.meresearch.org.uk/forward-me-group-minutes-31st-october-2017/) - Minutes of the Meeting held in Residence 2, House of Lords, Tuesday 31 October 2017, 1.30 pm Present: Countess of Mar (Chairman); Janice & Bill Kent (reMEmber); Christine Harrison (BRAME); Hannah Clifton & Gareth Tucker (ME Trust); Jane Colby & Anita Williams (TYMES Trust); Tony Crouch (representing 25% Group and TYMES Trust); Clare Ogden (Action for ME); Dr Charles
- [Qualitative study of the Lightning Process](https://www.meresearch.org.uk/lightning-process/) - There are many views about the Lightning Process (LP) as a alternative treatment for ME/CFS, and the Internet hosts a range of patients’ anecdotes – some reporting lightning cures, some reporting no success at all. The first published evidence of the experiences of young people with LP, from the Harvard University in Boston, has now
- [Forward ME Group Minutes - 17th October 2017](https://www.meresearch.org.uk/forward-me-group-minutes-17th-october-2017/) - Minutes of the Meeting held in Residence 2, House of Lords, Tuesday 17 October 2017, 2.00 pm Present: Countess of Mar (Chairman); Janice & Bill Kent (reMEmber); Hannah Clifton (ME Trust); Jane Colby & Anita Williams (TYMES Trust); Tony Crouch (representing 25% Group and TYMES Trust); Clare Ogden (Action for ME); Dr Charles Shepherd (ME Association);
- [AHRQ Evidence Review](https://www.meresearch.org.uk/ahrq-review/) - The 2014 the Agency for Healthcare Research and Quality (AHRQ) in the USA published an evidence review, which reported that treatment with cognitive behavioural therapy (CBT) and graded exercise therapy (GET) improved fatigue, function, global improvements, and employment in ME/CFS patients. This conclusion was based on a combined analysis of studies using a range of
- [NEW STUDY – Genetic marker detection](https://www.meresearch.org.uk/genetic-marker-detection/) - Prof Brett Lidbury and colleagues at the John Curtin School of Medical Research, Australian National University in Canberra are conducting an ongoing programme, funded by charities in Australia, which aims to find biomarkers for ME/CFS using a range of sources – bioinformatics, genetics and pathological testing. ME Research UK has provided funding to the group
- [Brain abnormalities in ME/CFS](https://www.meresearch.org.uk/brain-abnormalities-in-mecfs/) - Prof Jose Montoya’s group at Stanford University School of Medicine has just published a scientific report (see abstract below) containing some striking results. The researchers’ aim was to see whether ME/CFS patients had “differences in gross brain structure, microscopic structure, or brain perfusion that may explain their symptoms”, so they compared brain MRI images from
- [Stanford symposium videos](https://www.meresearch.org.uk/stanford-symposium/) - Stanford Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Symposium: Advances in Clinical Care and Translational Research A symposium on ME/CFS took place at the Li Ka Shing Center for Learning and Knowledge (photo), Stanford, California on March 19 2014. This was a Continuing Medical Education Conference presented by the Department of Medicine and Division of Infectious Diseases and
- [Sleep loss can hurt brain](https://www.meresearch.org.uk/sleep-loss-hurts-brain/) - An article in the scientific journal, Sleep, has received wide media coverage. It showed that a lack of sleep, even in healthy young people, produces chemical changes in the brain similar to being hit hard on the head. Specifically, the young men tested had spikes in the molecules NSE and S-100B after the loss of just
- [Telomere Shortening](https://www.meresearch.org.uk/telomere-shortening/) - Telomeres are ‘caps’ of DNA and protein located at the end of chromosomes to protect them from deteriorating or becoming fused with other chromosomes when cells are dividing. Structurally, they consist of a region of hundreds or even thousands of repetitive sequences of nucleotide letters, usually repeats of the sequence TTAGGG. One of the
- [A Dozen Different Diseases?](https://www.meresearch.org.uk/stephen-holgate/) - There’s an interesting background piece on Phoenix Rising , based on Prof Stephen Holgate’s presentation to the Forward ME group at the House of Lords a few weeks ago. It covers a range of issues, including his belief that ME/CFS could have twelve to fifteen different “causal pathways”. Importantly, the essay links to a viewpoint article
- [Inside Out](https://www.meresearch.org.uk/inside-out/) - We are very pleased to announce that ME Research has awarded a new research grant to Prof. Yan Yiannakou of Newcastle upon Tyne Hospitals NHS Foundation Trust. ME/CFS is relatively common among patients with irritable bowel syndrome (IBS), and the two conditions share a number of similarities which suggest they might be linked. The team
- [NICE CFS/ME guideline to be updated](https://www.meresearch.org.uk/nice-cfsme-guideline-to-be-updated/) - The following is an updated version of an article written for the autumn 2017 issue of Breakthrough magazine. As you will see, recent developments mean that the story now has a potentially happier ending. The National Institute for Health and Care Excellence (NICE) announced on 20th September 2017 that it is planning a full update
- [Faecal transplants?](https://www.meresearch.org.uk/fmt/) - Faecal microbiota transplantation (FMT) is the infusion of faecal matter from a healthy person into the colon of an ill person, usually by enema, with the aim of re-establishing a balanced intestinal flora to the digestive system. Apparently, the first use of faeces in this way was described around 1700 years ago in China, while
- [Forward ME Group Minutes - 11th July 2017](https://www.meresearch.org.uk/forward-me-group-minutes-11th-july-2017/) - Minutes of the meeting held at House of Lords, Tuesday 11th July 2017, 2pm Present: Countess of Mar (Chairman); Janice and Bill Kent (reMEmber); Dr Charles Shepherd (ME Association); Clare Ogden (AFME); Jane Colby (TYMES); Tony Crouch (representing the 25% Group and TYMES Trust); Christine Harrison (BRAME); and Sue Waddle (ME Research UK). In Attendance:
- [Useful Information on ME](https://www.meresearch.org.uk/information-sources/) - Myalgic encephalomyelitis (ME) is a potentially chronic illness experienced by approximately 200,000 people in the UK and 1 million in the USA. This makes the disease twice as prevalent as multiple sclerosis, systemic lupus and HIV infection. A number of overviews, guidelines and reports have been written on the disease over the years. Since different
- [Forward ME Group Minutes - 22nd June 2017](https://www.meresearch.org.uk/forward-me-group-minutes-22nd-june-2017/) - Minutes of the meeting held in the Television Interview Room, House of Lords, Thursday 22 June 2017, 10am Present: Countess of Mar (Chairman); Dr Charles Shepherd (ME Association); Bill & Janice Kent (reMEmber); Tony Crouch (representing 25% Group and TYMES) and Clare Ogden (AFME). In Attendance: Professor Kamila Hawthorne and Fiona Erasmus (Royal College of General
- [Breakthrough Spring 2017](https://www.meresearch.org.uk/breakthrough-spring-2017/) - The electronic version of our Spring 2017 Breakthrough magazine is now online. Download a pdf or read it online. The contents include ME Research UK-funded research on heart volume and function in ME/CFS, and DNA pooling to identify new biomarkers; short items on research funding levels, telomere shortening, and acute phase proteins; and many
- [Where Twines the Path](https://www.meresearch.org.uk/where-twines-the-path/) - We are delighted to announce that ME Research UK has awarded a new research grant to Dr Audrey Brown at Newcastle University. Previous work at Newcastle has revealed abnormalities in the AMPK enzyme that may help explain the muscle fatigue experienced by patients with ME/CFS. This new project aims to explore the mechanisms underlying these
- [Sleep Disturbances](https://www.meresearch.org.uk/sleep-disturbances/) - Sleep problems affect many people with ME/CFS; in fact, one investigation of 1578 patients found that 92–94% reported sleep disturbances with a high degree of severity. Now, a new report in BMJ Open from the Centre for Sleep Research at Northumbria University has confirmed this and shown, in addition, that patients differ in the kinds
- [Slowing of information processing](https://www.meresearch.org.uk/slowing-of-information-processing/) - Neurocognitive problems are one of the most frequent and disabling symptoms associated with ME/CFS. In fact, around 90% of 2073 patients reported having memory/attention deficit problems in a large study in 2001. Crucially, patients often say that physical or mental exertion makes their cognitive problems worse. A research group from University of Adelaide, South Australia investigating
- [Misdiagnosing the unexplained](https://www.meresearch.org.uk/misdiagnosing-the-unexplained/) - The April issue of The Psychologist (the house journal of the British Psychological Society) has published a letter from Joan Crawford, Chair of Chester ME Self-help and one of our old friends, a letter worth reading in full. In it, she responds to an article in the December 2013 issue which described some current thinking
- [UK Research Collaborative](https://www.meresearch.org.uk/uk-research-collaborative/) - The UK CFS/ME Research Collaborative (CMRC) was launched on Monday April 22nd at the Wellcome Collection in central London. The aim of the CMRC – the first of its kind in the world – is to promote the highest quality of basic and applied evidenced-based and peer reviewed research into ME/CFS by bringing together national
- [Orosomucoid and ME/CFS](https://www.meresearch.org.uk/orosomucoid-and-mecfs/) - Most scientific reports either confirm what we already know or reveal mildly interesting findings that contribute to the field in a small way. Every now and then, however, a research paper arrives that makes you stop and think (at least for a few minutes), and the most recent comes from researchers at the Second Military
- [Under Attack](https://www.meresearch.org.uk/under-attack/) - We are very pleased to announce that ME Research UK has awarded a research grant to Dr Madlen Löbel and Prof. Carmen Scheibenbogen at the Institute of Medical Immunology in Berlin. Following on from their findings that levels of autoantibodies against adrenergic receptors are increased in some people with ME/CFS, the researchers plan to explore
- [ME/CFS Biobank given £1 million](https://www.meresearch.org.uk/mecfs-biobank-given-1-million/) - The pioneering ME/CFS biobank project at the London School of Hygiene & Tropical Medicine received dramatic news recently, when the USA's National Institutes of Health awarded the project £1,029,411 ($1,588,225) over three years. Since 2011, a consortium of charities – ME Research UK, the ME Association and Action for ME –have been funding the ‘establishment
- [ME Research UK and the UK ME/CFS Research Collaborative](https://www.meresearch.org.uk/me-research-uk-and-the-uk-mecfs-research-collaborative/) - ME Research UK has taken the decision to withdraw its membership from the UK CFS/ME Research Collaborative with immediate effect. ME Research UK exists to fund biomedical research into ME/CFS, to find its cause, to develop effective treatments and ultimately to discover a cure. In 17 years, it has funded 45 specific research projects in
- [Forward ME Group Minutes](https://www.meresearch.org.uk/forward-me-group-minues/) - Minutes of the Meeting held in the Television Interview Room, House of Lords, Tuesday 14 March 2017, 2.00 pm Present : Countess of Mar (Chairman); Janice & Bill Kent (reMEmber); Hannah Clifton & Gareth Tucker (ME Trust); Jane Colby (TYMES Trust); Tony Crouch (representing 25% Group and TYMES Trust); Clare Ogden (Action for ME); Dr
- [Experiences of post-infectious fatigue syndrome](https://www.meresearch.org.uk/experiences-of-pifs/) - As scientists, it is very easy for us to focus on the biological details of an illness like ME/CFS and forget about the patients themselves. Hence the value of studies such as that by Eva Stormorken at the University of Oslo and Prof. Leonard Jason at DePaul University in Chicago, who in 2015 looked at
- [CMRC Minutes March 2017](https://www.meresearch.org.uk/cmrc-minutes-march-2017/) - The UK ME/CFS Research Collaborative (CMRC) held a board meeting on 21st March 2017 to discuss relevant issues, such as plans for an autumn 2017 conference, MEGA study and research matters. The draft Minutes are provided below. Launched in 2013 (see our overview of the event), the aim of the CMRC is to promote the
- [Forward ME Group Minutes](https://www.meresearch.org.uk/forward-me-group-minutes-10/) - Minutes of the Meeting held in the Television Interview Room, House of Lords, Tuesday 25 October 2016, 2.00 pm Present: Countess of Mar (Chairman); Janice and Bill Kent (reMEmber); Jane Colby (TYMES); Anita Williams (TYMES); Christine Harrison (BRAME); Dr Charles Shepherd (ME Association); Dr Paul Worthley (ME Trust); Sue Waddle (ME Research UK); Cath Ross
- [Forward ME Group Minutes](https://www.meresearch.org.uk/forward-me-group-minutes-9/) - Minutes of the Meeting held in the Television Interview Room, House of Lords, Wednesday 7 December 2016, 2.00 pm Present: Countess of Mar (Chairman); Janice and Bill Kent (reMEmber); Hannah Clifton (ME Trust); Jane Colby (TYMES Trust); Christine Harrison (BRAME); Clare Ogden (AFME); Dr Charles Shepherd (ME Association) and Sue Waddle (ME Research UK). Apologies
- [Forward ME Group Minutes](https://www.meresearch.org.uk/forward-me-group-minutes-8/) - Minutes of the Meeting held in the Television Interview Room, House of Lords, Tuesday 7 February 2017, 2pm Present: Countess of Mar (Chairman); Janice and Bill Kent (reMEmber); Dr Charles Shepherd (ME Association); Clare Ogden (AFME) and Tony Crouch (representing the 25% Group and TYMES Trust). Apologies had been received from Sue Waddle (ME Research
- [CMRC Conference 2016](https://www.meresearch.org.uk/cmrc-conference-2016-2/) - The 92-page official report of the third UK ME/CFS Research Collaborative (CMRC) scientific conference has been finalised, and can be downloaded as a pdf from Action for ME’s website. The conference was held in Newcastle on 28th and 29th September 2016, and was attended by more than 90 scientists and people affected by ME/CFS. ME
- [State of the Knowledge Workshop Report available](https://www.meresearch.org.uk/workshop-report/) - A professionally produced copy (pdf) of report of the NIH’s "State of the Knowledge Workshop on ME/CFS Research" is now available . This meeting was convened in April 2011, and was attended by 32 investigators from numerous scientific disciplines and a range of other interested parties. In fact, a good overview of some of the
- [Low mitochondrial content](https://www.meresearch.org.uk/low-mitochondrial-content/) - Mitochondria are found in most cells, and their main job is to generate chemical energy. Disorders of mitochondrial function are implicated in a number of diseases, including mental disorders and heart problems, as well as being involved in the ageing process. Since ME/CFS is characterised by a profound, generalised, post-exertional loss of muscle power, it
- [Neuromuscular strains](https://www.meresearch.org.uk/neuromuscular-strain/) - In the diagnosis and assessment of ME/CFS, there is a great need for simple objective measures that can differentiate the condition from other chronic illnesses, particularly after 24 or 48 hours when the effects of exercise can become most apparent. To date, researchers at Antwerp University Hospital have found upper limb muscle recovery is be
- [Meeting at Stormont Parliament](https://www.meresearch.org.uk/meeting-at-stormont-parliament/) - There was a very successful meeting for parliamentarians and decision-makers in the Parliament Buildings at Stormont on Tuesday February 4th 2014. The event, ‘ME in Northern Ireland: practice and research priorities’, was attended by around 100 politicians, researchers, health professionals, civil servants and patients, and it included a range of presentations. Dominic Bradley MLA opened
- [Is mitochondrial function abnormal?](https://www.meresearch.org.uk/is-mitochondrial-function-abnormal/) - Mitochondria are often referred to as the power plants of the body because they are responsible for generating nearly all the energy needed to support life. These kidney bean-shaped structures are found in most cells and are made up of different compartments, each with a specific role related to the metabolism of the cell they
- [Overview of our funded research](https://www.meresearch.org.uk/researchoverview/) - We’ve produced another print-run of our 32-page special edition of Breakthrough magazine entitled ‘£1 million of biomedical research: an overview of the projects you have funded’. If you would like a (free) hard copy in the post, simply email us with your name and address. You can also download a pdf copy or read it
- [Antidepressants and sleep](https://www.meresearch.org.uk/antidepressants-and-sleep/) - Although antidepressant medications are not considered to be specific treatments for ME/CFS, antidepressants are nevertheless sometimes prescribed at low doses (i.e. at concentrations lower than those typically used to treat depression), mainly to aid sleep. It’s thought that small doses of these agents, usually tricyclic medications such as amitriptyline, help to normalise ‘sleep structure’ (which
- [Genetic variation affects adrenergic receptors](https://www.meresearch.org.uk/genetic-variation-affects-adrenergic-receptors/) - Given the estimated 20,000 genes that determine the characteristics of human beings (and make up the human genome), identifying those that may be responsible for the development of ME/CFS is a challenge. But the task can be simplified by first considering the symptoms of the disease, and then targeting the search to those genes known
- [Virgin Money London Marathon 2017](https://www.meresearch.org.uk/virgin-money-london-marathon-2017-2/) - Following an open competition to choose a runner to fill ME Research UK's guaranteed charity place in the 2017 Virgin Money London Marathon, supporter Tom Whittingham has been picked to wear bib number 55102. The Virgin Money London Marathon is the largest annual fundraising event on the planet – runners have raised over £750 million
- [ME Research UK & the CMRC](https://www.meresearch.org.uk/me-research-uk-and-the-mecfs-research-collaborative/) - ME Research UK is committed to commissioning, promoting and supporting high quality biomedical research into ME/CFS. We strive to achieve this not only through our own efforts but also via our membership of the ME/CFS Research Collaborative. When ME Research UK joined the Collaborative it did so in a spirit of goodwill and co-operation with the aim of furthering the cause of biomedical research; however as with
- [Review of HPV vaccines](https://www.meresearch.org.uk/review-of-hpv-vaccines/) - The European Medicines Agency has announced the launch of a ‘safety review’ of human papillomavirus (HPV) vaccines (see press release). These vaccines, which involve three shots over six months, have been given to around 72 million people across the world with the aim of preventing many cases of cervical or other cancers. In the UK,
- [Nose and throat inflammation](https://www.meresearch.org.uk/nose-and-throat-inflammation/) - There are many different triggers for ME/CFS. In most people, the illness starts with an infection, often viral, but others report a vaccination or immunisation as the initial event. Although there has been very little research on this particular aspect, one Belgian report from 2002 found a small cluster of cases (around 5% of more
- [Accessibility of scientific data](https://www.meresearch.org.uk/accessibility-of-data/) - In the past year, Queen Mary University of London (QMUL) has declined two applications for access to data from the PACE trial, and is presently appealing against a ruling in favour of openness by the Information Commissioner. A recent statement by QMUL said that it was seeking further advice from various quarters on these decisions.
- [Muscle weakness in arms and trunk](https://www.meresearch.org.uk/muscle-weakness/) - One of the key difficulties that ME/CFS patients face is standing (orthostasis), particularly standing still. For them, simply being upright can trigger a cluster of symptoms, such as dizziness, altered vision, nausea, fatigue, headache or sweating. This ‘orthostatic intolerance’ can have many causes (see our article, “Standing up for ME”), but a a lack of
- [Breakthrough Autumn 2016](https://www.meresearch.org.uk/breakthrough-autumn-2016/) - The electronic version of our Autumn 2016 Breakthrough magazine is now online. Download a pdf or read it online. The contents include ME Research UK-funded research on the role of microRNAs as biomarkers in ME/CFS, and and other cutting-edge genetic research; short essays on changes in brain white matter, and walking and coordination problems; and
- [Metabolic abnormalities](https://www.meresearch.org.uk/metabolic-abnormalities/) - Intense media coverage has followed the publication of a study (read full text) from the University of California, San Diego reporting that ME/CFS has a distinct ‘metabolic signature’ that can accurately distinguish patients from healthy individuals. Metabolomics is the study of the unique chemical fingerprints that cell processes leave behind, and the team headed by
- [Milk protein intolerance](https://www.meresearch.org.uk/milk-intolerance/) - Around 20% of people in developed societies have adverse reactions to particular foods, and some have outright food intolerances, defined as undesirable non-allergic reactions that do not involve a direct immune response. The most common food ‘sensitivities’ in the modern world are to gluten, lactose, fructose, milk and eggs, but there are a plethora of
- [Publication of the PACE trial](https://www.meresearch.org.uk/publication-of-pace-trial/) - In the early 2000s, the UK’s Medical Research Council (MRC) funded two large clinical trials of ‘cognitive behavioural’ approaches for ME/CFS, at a cost exceeding £3 million. The first of these (the FINE trial) reported in the British Medical Journalthat ‘pragmatic rehabilitation’ for severely affected patients had some short-term benefits, but only a small, non-significant
- [Exercise and gene expression](https://www.meresearch.org.uk/exercise-and-gene-expression/) - The cardinal symptom of ME in the historical literature was profound, post-exertional loss of muscle power associated with muscle pain, tenderness and swelling. The 2007 NICE Clinical Guideline requires “post-exertional” symptoms (delayed with slow recovery over several days) for a diagnosis. Some researchers have therefore focussed on patients’ responses to exercise in a laboratory setting
- [Post-exertional symptoms for diagnosis](https://www.meresearch.org.uk/post-exertional-symptoms-for-diagnosis/) - There is much discussion about particular criteria for the diagnosis of ME, CFS, PVFS, CFS/ME or ME/CFS – just listing these acronyms makes the head spin. But, in the absence of hard data from real patients, much of the speculation generates more heat than light, and produces more angst than understanding. That’s why the results
- [The need for autonomic testing](https://www.meresearch.org.uk/autonomic-testing/) - In 2007, an ME Research UK-funded investigation showed that around three-quarters of ME/CFS patients had dysfunction of the autonomic nervous system. In fact, for many people with the illness, “orthostatic” symptoms on standing can be the most disabling, particularly standing still which can bring on dizziness, altered vision, nausea, fatigue etc (see our “Standing Up
- [Orthostasis & heart abnormalities](https://www.meresearch.org.uk/orthostasis-heart/) - We now know that many ME/CFS patients have orthostatic intolerance – the inability to stand upright for long without symptoms such as dizziness, altered vision, nausea, fatigue, neurocognitive difficulties, headache, sweating or pallor (see our article, “Standing up for ME”). For the past few years, researchers at the Miwa Naika Clinic in Toyama, Japan have
- [Forward ME Group Minutes](https://www.meresearch.org.uk/forward-me-group-minutes-7/) - Minutes of the Meeting held in the Television Interview Room, House of Lords, Tuesday 24 May 2016, 2.15 pm Present: Countess of Mar (Chairman); Bill and Janice Kent (reMEmber); Christine Harrison (Brame); Dr Charles Shepherd (ME Association); Dr Paul Worthley (ME Trust); Sue Waddle (ME Research UK) and Cath Ross (25% ME Group) Matters arising
- [Depending on others](https://www.meresearch.org.uk/being-dependent/) - Chronic illness and physical limitations are a fact of life for people with ME/CFS, but how do they feel about being dependent on other people? To answer this important question, researchers from the University of the West of England used semi-structured interviews to explore experiences of ten patients physically dependent on others for help day-to-day.
- [Reduced cardiac volumes](https://www.meresearch.org.uk/reduced-cardiac-volumes/) - Over the years, a number of reports in the scientific literature have pointed to the presence of abnormalities of heart (cardiac) function in ME/CFS. These include the ME Research UK-funded investigations by Prof Julia Newton, Dr Kieren Hollingsworth and colleagues at Newcastle University which have throw up some intriguing findings concerning the function of the
- [Committee to examine clinical diagnostic criteria](https://www.meresearch.org.uk/clinical-diagnostic-criteria/) - The US Department of Health and Human Services has announced * (by a Special Notice referenced under Solicitation 13-233-SOL-00686) that it is to provide funding, via the National Academies (Institute of Medicine), to “support a study committee to recommend clinical diagnostic criteria” for ME/CFS. The study committee, which will be made up of 'thought leaders' and
- [Immune responses to HSP60](https://www.meresearch.org.uk/hsp60/) - The scientific journal PloS ONE has just published a report by Prof. Jonas Blomberg and colleagues at the University of Uppsala in Sweden who, with funding from ME Research UK and others, have been looking for evidence of persistent or past infection in people with ME/CFS. A majority of ME/CFS patients can point to an
- [Vagus nerve infection?](https://www.meresearch.org.uk/vagus-nerve-infection/) - A new hypothesis paper speculates that infection of the vagus nerve itself might be the cause of the ME/CFS. Given the evidence of the involvement of infectious agents (virus or bacteria) in ME/CFS, the prevailing view is that its symptoms reflect an ongoing immune response to infection, possibly because of immune system dysfunction. However, the
- [Vision impairment studies](https://www.meresearch.org.uk/vision-thesis/) - Problems with eyes and vision are common in people with ME/CFS, but scientific investigations have been few. To redress the balance, ME Research UK and the Irish ME Trust funded the Vision and Language Research Group, University of Leicester to undertake experiments to identify and quantify vision-related symptoms in the disease and, to date, the
- [ME/CFS Biobank launch](https://www.meresearch.org.uk/mecfs-biobank-launch/) - May 12th is ME Awareness Day 2016, and it’s also the formal opening of the UK ME/CFS Biobank at the London School of Hygiene and Tropical Medicine. The biobank is now open for applications from researchers across the world who want to access samples. To mark this milestone, the team will be hosting a celebratory
- [Breakthrough Spring 2016](https://www.meresearch.org.uk/breakthrough-spring-2016/) - The electronic version of our Spring 2016 Breakthrough magazine is now online. Download a pdf or read it online. The contents include ME Research UK-funded research on Visual Stress and Discomfort, and Neurological Biomarkers in Youngsters with ME/CFS; short essays on the Experience of Fatigue, and Quality of Life in Children; and many shorter 'research
- [White matter abnormalities](https://www.meresearch.org.uk/brain-white-matter/) - Most studies in ME/CFS are cross-sectional in nature – researchers look at patients and controls at one point in time and make comparisons between the two groups. These investigations have their uses, but they don’t tell us about changes over time, which can be considerable if there is a continuing disease process. For instance, we
- [Parliamentary reception](https://www.meresearch.org.uk/parliamentary-reception/) - As part of ME Awareness Week 2016, there was a ‘drop in’ meeting today for members of the All Party Parliamentary group on ME at Westminster and any other MPs who wanted to come along. The main campaigning charities had a display table, with representatives available to talk to MPs. The co-chair of the group
- [MicroRNAs in ME/CFS](https://www.meresearch.org.uk/microrna/) - A lot of effort has gone into discovering whether microRNAs are involved in human disease, and a large array of different miRNA molecules are now linked with different illnesses, including cancer, epilepsy, malarial infection and multiple sclerosis. Dr Robert Petty and Dr Jonathan Kerr (Queen Mary University of London, and St George’s University of London
- [Human placental extract](https://www.meresearch.org.uk/placental-extract/) - In Korea, human placental extract (HPE) is apparently used to treat various illnesses. In most other countries, it is considered an alternative and complementary therapy as there is little formal evidence to support its use, and this may be why the FDA in the US keeps a watching brief (read more). HPE is extracted from
- [Mortality in ME/CFS](https://www.meresearch.org.uk/mortality-in-mecfs/) - Whether or not people with ME/CFS die earlier, for whatever reason, than the general population is an important question, and there are few good clues to the answer in the scientific literature. One analysis of information on 166 deceased patients in a memorial list kept by the National CFIDS Foundation in the USA found three
- [Intestinal bacteria](https://www.meresearch.org.uk/intestinal-bacteria/) - Recently, scientists have begun to focus on the hidden yet extensive world of microbes that live in our bodies (the ‘microbiome’ ) and, in fact, most bacterial cells are located in our gut – about 1.5 kg of bacteria per person. It’s now clear that gut bacteria can influence health in a variety of ways,
- [Study of Pain](https://www.meresearch.org.uk/study-of-pain/) - Good news that the CFS Research Foundation is funding an experimental study into the neurophysiology of pain . Based at Barts and The London School, it will explore central sensitisation and the spinal and central components involved. Pain is a very common symptom in ME/CFS; it tends to be experienced in the muscles and/or joints
- [The Vaccination Question](https://www.meresearch.org.uk/the-vaccination-question/) - Whether or not ME/CFS patients should have vaccinations has been a hot topic for many years. The question is reasonable, however, since if the illness involves immune dysfunction – as we all suspect – then patients’ responses to vaccination might be very different from those of healthy people. Researchers from Radboud University Nijmegen have published
- [Walking & Co-ordination Problems](https://www.meresearch.org.uk/walking-co-ordination/) - We already know that many ME/CFS patients have difficulties standing (orthostasis), particularly standing still (see Standing up for ME). In fact, symptoms of ‘orthostatic intolerance’ can often be found in these patients during clinical assessment (read more) , and there is also evidence that they can have problems walking; for example, one ME Research UK-funded
- [The real experience of ‘fatigue’](https://www.meresearch.org.uk/the-real-experience-of-fatigue/) - Fatigue is a disabling consequence of a wide range of chronic diseases, including cancer and multiple sclerosis. It was one also of the symptoms associated with past outbreaks of myalgic encephalomyelitis (ME); in his famous 1959 review of outbreaks (read more; pdf), Sir Donald Acheson described, "…a period of convalescence prolonged by fatigue, aches and
- [Quality of life in young patients](https://www.meresearch.org.uk/quality-of-life-in-young-patients/) - For such a devastating illness, there is surprisingly little information in the scientific literature about patients’ experiences of living with ME/CFS day-to-day. The few investigations that have been conducted have concentrated on adults, and they show that both physical and mental activity can be severely affected. But what about young people? There have been few
- [History corner: activated but ignored](https://www.meresearch.org.uk/history-corner-activated-but-ignored/) - Time marches on, they say, but sometimes it can seem to stand still, at least where research into ME/CFS is concerned! One of the early biomedical investigations into ME/CFS occurred at the University of Dundee in 1993, spurred by an observation by Prof Jay Levy (San Francisco) that people with ME/CFS had raised levels of
- [Media ballyhoo over PACE](https://www.meresearch.org.uk/ballyhoo-over-pace/) - The latest spin-off scientific paper from the PACE trial is out this week in The Lancet Psychiatry (read here). As usual, there is widespread misleading coverage in the press, with the Daily Mail trumpeting “ME can be beaten by taking more exercise and positive thinking” and the Daily Telegraph piping up “Chronic Fatigue Syndrome sufferers'can
- [Immunity and exercise](https://www.meresearch.org.uk/immunity-and-exercise/) - Pain, fatigue and malaise after exercise are hallmarks of ME/CFS, and their very presence greatly helps to distinguish ME/CFS from, say, major depressive disorder. Many of these symptoms can be explained by the actions of the immune system in response to over-exertion, but is there good scientific evidence to back this up? Prof Jo Nijs
- [Neuroinflammation webinar](https://www.meresearch.org.uk/neuroinflammation-webinar/) - In the third of 7 short webinars, Dr. Lucinda Bateman of Salt Lake City discusses neuroinflammation in the context of ME/CFS. The talk is now available to view, hosted by the active Dutch organisation ME/CVS Vereniging. https://youtu.be/la3HQtoJWzE A transcript of the talk (pdf) is available here: Dr. Lucinda Bateman - Neuroinflammation and ME-CFS Dr Bateman
- [NIH report: Advancing Research](https://www.meresearch.org.uk/nih-workshop-report/) - The prestigious US scientific journal Annals of Internal Medicine has just published a position paper – Advancing the research on ME/CFS – which summarizes the conclusions of the ‘Pathways to Prevention’ Workshop organized and co-sponsored by the National Institutes of Health (NIH). The workshop took place over two days in December 2014, and was informed by
- [ME/CFS in women and men](https://www.meresearch.org.uk/sex-differences-in-mecfs/) - ME/CFS affects more women than men, in an approximate ratio of 4:1. In this respect, the disease is similar to other immuno-inflammatory conditions, such as lupus erythematosus systemic, multiple sclerosis, rheumatoid arthritis, Sjögren's syndrome, etc, which are also more prevalent in women. As very few studies have ever examined whether being female or male affects
- [Norwegian Rituximab Studies](https://www.meresearch.org.uk/rituximab-studies/) - The publication of a scientific report in October 2011 showing an improvement of symptoms with rituximab (Fluge et al, PLoS ONE 2011) made a big splash in the ME world, and received widespread coverage in the press. Rituximab is a monoclonal antibody against the CD20 protein mainly found on the surface of a type of
- [MRC sponsor Patient Session](https://www.meresearch.org.uk/mrc-session/) - ME Research UK welcomes the Medical Research Council’s (MRC) decision to fund the Patients’ Session at the UK CFS/ME Research Collaborative conference in Bristol in September 2014. The publicly-funded Government agency responsible for co-ordinating and funding medical research is sponsoring the conference. As part of its commitment to enhancing collaboration and engagement between key partners,
- [Countess of Mar's letter to author](https://www.meresearch.org.uk/countess-of-mar-letter/) - On June 6th 2015, The Times newspaper published a review by David Aaronovitch of a new book called 'It’s All in Your Head: True Stories of Imaginary Illness’ by Dr Suzanne O'Sullivan who is a consultant neurologist at the National Hospital for Neurology and Neurosurgery. The book received positive coverage in the press, but there
- [The views of GPs in Oxfordshire?](https://www.meresearch.org.uk/gps-in-oxfordshire/) - Surveys count as research too – and the results of a survey of GPs in Oxfordshire can now be read in full . It was undertaken by Oxfordshire ME Group for Action (OMEGA), which had helped to develop and agree a new Patient Pathway in 2010 and wanted to test (among other things) awareness of
- [Fond Farewell to CFSRF](https://www.meresearch.org.uk/fond-farewell-to-cfsrf/) - The impending closure of the Chronic Fatigue Syndrome Research Foundation (CFSRF) following the unexpected death of its driving force Anne Faulkner on 7th November 2013, marks the end of a chapter in the history of ME/CFS research. Founded in 1992 by Anne and her late husband Hugh, the CFSRF was – like ME Research UK
- [Brain fog and Alzheimer’s](https://www.meresearch.org.uk/brain-fog-and-alzheimers/) - ‘Neurocognitive’ symptoms, mainly problems with memory and concentration (see review), are extremely common in both ME/CFS and fibromyalgia. Patients usually use the terms ‘brain fog’ or ‘fibrofog’ describe what the experience feels like, and many say that its consequences can be as devastating and as worrisome as the other symptoms, such as pain and fatigue,
- [Immune Markers in CSF](https://www.meresearch.org.uk/immune-markers-in-csf/) - In a press release today, Columbia University’s Mailman School of Public Health reports that its scientists have identified “a unique pattern of immune molecules in the cerebrospinal fluid of people with ME/CFS", raising hopes of improvements in diagnosis and treatment. The study, published in Molecular Psychiatry, is the second published by Prof Mady Hornig, Prof
- [Canadian definition insensitive?](https://www.meresearch.org.uk/canadian-definition/) - One of the most animated debates surrounding ME/CFS concerns the name of the illness and how it is diagnosed. At present, a range of possible definitions exist – around 20 according to a 2014 review, and 21 if we include the new SEID definition from the Institute of Medicine – but each is different (sometimes
- [Increased gynaecological problems](https://www.meresearch.org.uk/gynaecological-problems/) - A new study, just reported online in the journal Menopause, links ME/CFS with early menopause (most often due to hysterectomy), along with other gynaecological problems and pelvic pain. The researchers examined 84 CFS patients and 73 healthy women from a case-control study in Georgia, USA. The women with CFS reported significantly more gynaecological conditions: menopause
- [Fear Avoidance of Exercise?](https://www.meresearch.org.uk/fear-avoidance-of-exercise/) - The Lancet Psychiatry has just published the latest analysis based on data gathered during the MRC-funded PACE trial (2011). This is the sixth sub-analysis in the series – others have dealt with cost-effectiveness, pain, ‘recovery’, adverse effects and statistical methods – but it is the most difficult to understand, as it deals with the ‘mechanisms’
- [Interview with Sue Waddle](https://www.meresearch.org.uk/interview-with-sue-waddle/) - As part of the ‘Graticast’ series, presenter Chip visited ME Research UK's vice-chair Sue Waddle at her home for an informal interview on youTube. Sue has been involved with ME for many years, and the chat covered her family’s own experiences of the illness, the difficulties patients face, and ME Research UK’s quest to fund research.
- [Epigenetics & immune dysfunction](https://www.meresearch.org.uk/epigenetics-immune/) - We have all become accustomed to the idea that diseases can have either environmental or heritable causes – in fact, this dichotomy is now hard-wired into our views of the world. However, a relatively new field of endeavour – epigenetics – is beginning to challenge these assumptions. Conventional genetics is concerned with changes to sequences
- [Movement in young patients](https://www.meresearch.org.uk/movement-restrictions/) - In biomedicine, a joint that has a reduction in its ability to move is said to have a limited ‘range of motion’. The most common cause is a mechanical problem at the specific joint, most often seen in the arthritic diseases accompanied by swelling, stiffness and pain. In the past, researchers have noted a link
- [Gluten sensitivity](https://www.meresearch.org.uk/gluten-sensitivity/) - The protein gluten is mainly found in wheat, but it’s also a constituent of rye, oatmeal and barley. Gluten-related disorders (encompassing a range of conditions from marked coeliac disease to a more simple gluten allergy) are increasingly recognised in developed countries, and a specific type – ‘non-coeliac gluten sensitivity’ – is the subject of a
- [ME/CFS is more than a meme](https://www.meresearch.org.uk/mecfs-no-meme/) - According to Richard Dawkins in his book The Selfish Gene, a meme is "an idea, behaviour or style that spreads from person to person within a culture." On 18th June 2014, a comment appeared on the website of the British Medical Journal entitled “Is Chronic Fatigue Syndrome a meme?” Authored by Drs Anthony Collings and David
- [All Party Parliamentary Group on ME](https://www.meresearch.org.uk/parliamentary-group-me/) - AGM held Wednesday 12th June, 2.30pm, Room Q, Portcullis House, Westminster Chair: Annette Brooke MP Vice-Chairs: Countess of Mar & Ian Swales MP Secretary: Russell Brown MP Present: Parliamentarians : Annette Brooke MP, Russell Brown MP, Tom Clarke MP and The Countess of Mar Secretariat : Sonya Chowdhury (Action for M.E.) and Charles Shepherd &
- [Widespread neuroinflammation](https://www.meresearch.org.uk/widespread-neuroinflammation/) - There are good reasons for thinking that central nervous system pathology is important in ME/CFS, and some indications that inflammation of the brain (neuroinflammation) might be involved. However, proving the existence of neuroinflammation requires specific neuroimaging methods, and these had never been applied to ME/CFS patients – until Japanese researchers bit the bullet. The
- [Programmes of research](https://www.meresearch.org.uk/research-programmes/) - Unravelling the scientific basis of ME/CFS is no simple matter. Funding one-off investigations is important, but real breakthroughs in modern science come at the end of programmes of painstaking work by a specialist group of researchers. That’s why we’ve tried to give continuing support to key groups early in their investigations when it can be
- [ME/CFS and the risk of cancer](https://www.meresearch.org.uk/mecfs-and-cancer/) - The fact that ME/CFS has an infectious onset in many cases, and is associated with abnormalities of cellular immunity, raises the question of whether people with the illness are at an increased risk of developing cancer. There is certainly no definitive evidence that this is the case – principally because the large-scale epidemiological studies needed
- [A HOT new therapy?](https://www.meresearch.org.uk/a-hot-new-therapy/) - One symptom commonly reported by patients with ME/CFS is orthostatic intolerance, which is characterised by fainting or a loss in consciousness when standing up, and is caused by abnormalities in the body’s neurological system. An individual with orthostatic intolerance is unable to compensate for the changes in blood pressure that occur on standing, and this
- [High transforming growth factor](https://www.meresearch.org.uk/high-transforming-growth-factor/) - Abnormalities of the immune system are frequently found in ME/CFS, and there is evidence that the “cytokine” transforming growth factor beta (TGF-b1), a protein molecule which regulates a wide variety of cell processes, might be involved. In fact, ME Research UK-funded work on ME/CFS at the University of Dundee found high concentrations of active TGF-b1
- [Mortality and ME/CFS](https://www.meresearch.org.uk/mortality-and-mecfs/) - In 2006, the journal Health Care for Women International published an analysis of a memorial list by Prof Lenny Jason and colleagues at the University of Chicago. The list, tabulated by the National CFIDS Foundation, contained information on 166 deceased individuals reported to have a diagnosis of CFS and whose list data had been supplied by
- [60 years of under-funded research](https://www.meresearch.org.uk/60-years-of-under-funded-research/) - We all know that research into ME/CFS is meagre compared with other chronic illnesses, but the figures themselves are astounding, as we noticed when updating our Research Database recently. Looking at the ‘all time’ scientific publications to 31st December 2013, far more were for rheumatoid arthritis (115,605), type 2 diabetes (102,729) and MS (59,217) than
- [Multivitamin supplementation](https://www.meresearch.org.uk/multivitamins/) - Scientific research often tends to focus on the complicated – fancy techniques, fancy measurements, and (sometimes) fanciful speculation. So, it’s refreshing to see a simple experiment for a change. With funding from the Ministry of Science in Serbia, researchers at the Clinic for Infectious Diseases, University of Novi Sad recruited 38 women with CFS (Fukuda
- [First Lyme disease guidance](https://www.meresearch.org.uk/first-lyme-disease-guidance/) - Public Health England (PHE) has formally announced that it will coordinate the development of new UK guidance on the diagnosis and treatment of Lyme disease. A multi-disciplinary team – involving infectious disease specialists, microbiologists, neurologists, GPs and patient groups – will carry out the work. The proposal was raised informally last October at PHE's first Lyme
- [Upper arm muscle recovery](https://www.meresearch.org.uk/upper-arm-muscle-recovery/) - The fact that muscles take longer to recover after exertion is a characteristic feature of ME, but experimental studies showing this have been few and far between over the past 30 years. In fact, as Dr Kelly Ickmans (ME Research UK research fellow at Vrije Universiteit Brussel) points out in her new paper in European
- [Audit of illness in young people](https://www.meresearch.org.uk/audit-in-young-people/) - Many thousands of people under the age of 16 in the UK have a diagnosis of ME/CFS. And as the Chief Medical Officer’s report in 2002 made clear, the illness “potentially threatens physical, emotional, and intellectual development…and can disrupt education and social and family life, at a particularly vulnerable time of life”. Despite this, there’s surprisingly
- [Funding rituximab studies in UK](https://www.meresearch.org.uk/funding-rituximab-studies-in-uk/) - At ME Research UK, we’ve been interested in the therapeutic role of rituximab since reports of its use in ME/CFS patients in Norway were published in 2009 and 2011 (see our comment on these studies below). Ideally, clinical trials would already have been conducted in the UK to confirm or refute the clinical usefulness of
- [Fatigue heralding multiple sclerosis](https://www.meresearch.org.uk/fatigue-heralding-ms/) - A scientific report in this month’s Multiple Sclerosis Journal reveals an intriguing fact – that many people are given a ‘fatigue-related’ diagnostic label long before receiving a confirmed diagnosis of multiple sclerosis (MS). Over half of MS patients say that fatigue is one of their worst symptoms, and the researchers from University of Kentucky were
- [Negative results in research](https://www.meresearch.org.uk/negatives-in-research/) - Everyone likes a positive result, and “positive” scientific papers are more frequently seen in the literature than those which have “negative” or unclear findings. An interesting essay in the prestigious journal ‘Science’ reflects on “negative results” and what their non-publication means for the scientific process. Strikingly it says, “In fields from clinical medicine to psychology…the literature
- [The voice of the patient](https://www.meresearch.org.uk/voice-patient/) - Patients’ views are not often heard – at least, not in formal publications like scientific papers or official reports. So, it is refreshing to read the newly-released U.S. Food and Drug Administration (FDA) document called the “The Voice of the Patient”, which summarizes the input from patients and patient representatives at the ‘Patient-Focused Drug Development
- [Similarities with multiple sclerosis ](https://www.meresearch.org.uk/similarities-with-multiple-sclerosis/) - In a newly published review in BMC Medicine , Morris and Maes – two of the most prolific authors of papers on ME/CFS – explore similarities between multiple sclerosis and ME/CFS as regards disease characteristics (phenomenology) and immune or neurological dysfunction. They point out, for example, that in both illnesses patients can suffer severe levels
- [Mitochondrial malfunction?](https://www.meresearch.org.uk/mitochondrial-malfunction/) - The mitochondria are small organelles (or subunits) found in most animal and plant cells. They are often described as the power plants of the cell because their main job is to generate chemical energy, although they also have other roles in signalling and cell growth. Mitochondrial dysfunction seems to be implicated in a number of
- [Lessons in herding zebras](https://www.meresearch.org.uk/herding-zebras/) - Proper diagnosis is a key issue in ME/CFS. In the absence of a full clinical assessment (which most patients have either never undergone, or last had many years ago), the diagnosis of ME/CFS can easily become a terminal stop for clinically complex patients with a variety of different illnesses. Some examples illustrate the problems that
- [Psychosocial limitations](https://www.meresearch.org.uk/psychosocial-limitations/) - The cognitive-behavioural model of ME/ CFS postulates that fear-based avoidance behaviour and physical deconditioning can explain many of the symptoms and impairments associated with the illness. However, a thoughtful essay by Dr Fred Friedberg of Stony Brook University, New York (published in the Bulletin of the IACFS/ME) has examined the assumptions underlying this model and
- [Bacteria in your guts?](https://www.meresearch.org.uk/bacteria-guts/) - Various gastrointestinal and neurological problems that are common in people with ME/CFS are surprisingly similar to the symptoms of “D-lactic acidosis”. This condition arises from bacterial fermentation of carbohydrates in the gastrointestinal tract, leading to increased lactic acid levels in the blood. Could there be an overgrowth of Gram-positive anaerobic lactic acid bacteria in the
- [Lactate in the brain](https://www.meresearch.org.uk/lactate-in-the-brain-2/) - A recent overview of neurocognitive research into ME/CFS found that attention span, memory and reaction time were impaired, a finding that is consistent with the memory and concentration problems that patients themselves complain about. Given that some neuropsychiatric disorders also show similar cognitive symptoms, there is a need to identify specific biomarkers to differentiate ME/CFS
- [Who gets better?](https://www.meresearch.org.uk/who-gets-better/) - The outcomes of ME/CFS can vary considerably between people. While some research reports say that recovery is a real possibility for some people, others say that recovery is rare though significant improvements can occur in about 40%. But is there any way of predicting what will happen to a particular patient? Are there any characteristics
- [Sleep disturbances](https://www.meresearch.org.uk/sleep-disturbances-2/) - In narcoleptic sleep disorders, people feel excessively sleepy during the day, and may also fall asleep at inappropriate times. Treatments now consist of trying to improve the quality and depth of their sleep to restore the disrupted sleep pattern. But perhaps these therapies might also be helpful to people with ME/CFS? The question is pertinent
- [Types of fatigue](https://www.meresearch.org.uk/types-of-fatigue/) - Fatigue gets a bad press. The word can be confused with ordinary, everyday tiredness (particularly in the media), or used non-specifically, such as in the umbrella term Chronic Fatigue Syndrome. As many patients belonging to ME/ CFS support groups point out, fatigue is not their primary problem. Musculoskeletal weakness and post-exertional myalgia, along with other
- [Cerebrospinal fluid proteins](https://www.meresearch.org.uk/cerebrospinal-fluid-proteins/) - ME/CFS shares its symptoms with a range of illnesses, a fact which will complicate diagnosis and research of the condition until a specific biological marker is found. One ‘overlapping’ diagnosis is Lyme disease (caused by Borrelia bacteria transmitted via tick bites), particularly the neurological Lyme disease syndrome which seems to emerge after treatment. In fact,
- [Exploding the depression myth ](https://www.meresearch.org.uk/exploding-depression-myth/) - The idea that depression is at the root of the symptoms of ME/CFS has been exploded in two interesting overviews. The first, aptly titled “Don’t Assume It’s Depression”, was a systematic review of the scientific literature on ME/CFS and depression conducted by researchers at West Virginia University. Their initial premise was that – since “at
- [Immune links between ME/CFS and cancer ](https://www.meresearch.org.uk/immune-links-me-cancer/) - Cancer fatigue is a well-recognised, often intense symptom experienced both during and after treatment. Since cancer and ME/CFS share both fatigue and severe disability, researchers in Antwerp speculated that there could be other links between the two pathologies, particularly as regards immune abnormalities. The key findings of their in-depth review, published in Anticancer Research in
- [Memory and attention problems ](https://www.meresearch.org.uk/memory-and-attention-problems/) - Neurocognitive problems are one of the most frequent and disabling symptoms associated with ME/CFS. In one investigation, 89% of patients reported memory/concentration problems, while in another large study memory/attention deficit problems were reported by approximately 90% of 2,073 consecutive patients. Crucially, patients often report that their cognitive problems can be made worse by physical or
- [Qigong Exercise](https://www.meresearch.org.uk/qigong-exercise/) - Over the years, a range of putative therapies for ME/CFS have been tested in controlled trials – and the latest is Qigong, a complementary and alternative medicine said to improve health, prevent disease and prolong life. Qigong is commonly thought to have originated with the Yellow Emperor (2696–2598 BCE) and the ‘Huangdi Neijing’ book of internal
- [Lessons from the XMRV fiasco](https://www.meresearch.org.uk/lessons-xmrv-fiasco/) - Between 2009 and 2012, the controversy over the retroviruses XMRV/XMLV and their role in ME/CFS involved a tumultuous roller-coaster ride for patients and scientists around the world. More than 50 scientific papers reported no association between the viruses and ME/CFS or other diseases – including one ME Research UK-funded study – and the final act
- [Exploding the myth of depression](https://www.meresearch.org.uk/myth-depression/) - The hypothesis that depression is at the root of the symptoms of ME/CFS – a myth particularly prevalent in the 1990s – is slowly crumbling. In fact, a review in 2008 described the range of symptoms that the two illnesses do not share, and listed biological abnormalities separating ME/CFS from depression, such as sleep problems
- [An objective test for orthostatic intolerance?](https://www.meresearch.org.uk/test-orthostatic-intolerance/) - Symptoms of autonomic nervous system dysfunction are present in around three-quarters of ME/CFS patients (see our comment). One of these symptoms is orthostatic intolerance, the inability to remain standing without ill effects. Many patients know from experience that standing can bring on dizziness, nausea, altered vision and fatigue. Yet, their reports are often discounted by
- [Hope for youngsters](https://www.meresearch.org.uk/hope-for-youngsters/) - Young people with ME/CFS are thought to have better rates of improvement or recovery than adults – see the RCPCH guideline of 2004 – and a report from Oslo University Hospital, Norway has provided further support for this belief. Clinicians in the Paediatric Outpatient Clinic, who had completed a study of adolescents with ME/ CFS
- [Inflammation of the brain](https://www.meresearch.org.uk/inflammation-brain/) - As you might expect, the journal Medical Hypotheses publishes speculative papers about the cause and consequences of diseases. Because it is an ‘orphan illness of unknown aetiology’, ME/CFS has been the subject of a number of such papers over the years, most recently a contribution on the possible role of brain inflammation. Dr Simon Arnett
- [How many people have ME/CFS?](https://www.meresearch.org.uk/how-many-people-have-mecfs/) - It’s said that 17 million people in the world have ME/CFS – but this figure is no more than a rough guess based on crude prevalence estimates from developed countries (0.2 to 0.4%, including children) applied to the 7 billion inhabitants of planet Earth! In fact, rigorous, robust estimates of the occurrence of the illness
- [Human herpesvirus](https://www.meresearch.org.uk/human-herpesvirus/) - Human herpesvirus 6 is thought to play a role in several neurological diseases. A recent technical report from the National Institutes of Health, Bethesda describes the development of novel techniques capable of detecting antibodies to HHV-6 infection, and the use of these techniques to examine blood serum samples from ME/CFS patients and healthy controls. Overall,
- [Montezuma’s suggestion](https://www.meresearch.org.uk/flavonoids/) - Chocolate is rich in flavonoids, and evidence from observational studies suggests that dietary flavonoids may reduce the risk of death from coronary heart disease, cancer and stroke. Apparently, it was the Aztec Emperor Montezuma II who first noted the effect of chocolate on various symptoms, including fatigue: “A cup of this precious drink [cocoa] permits
- [Insult to the midbrain](https://www.meresearch.org.uk/insult-midbrain/) - No-one really knows what causes the prominent “cognitive” problems in ME/CFS, such as memory, concentration and attention deficits. However, vascular insufficiency, metabolic dysregulation or an ongoing infectious process have all been postulated as being involved. A fascinating case–control study from the University of Adelaide has reported findings from magnetic resonance imaging of the brain using
- [Under-diagnosis in school children](https://www.meresearch.org.uk/under-diagnosis-school-children/) - We do not really know how many youngsters are affected by ME/CFS, but with rough prevalence figures of 60 to 70 cases per 100,000, it is likely that around 9,000 people under the age of 16 in the UK meet the criteria for the illness which – according to the report to the Chief Medical
- [More chat on ME/CFS Internet forums](https://www.meresearch.org.uk/chat-mecfs-internet-forums/) - Over the last decade, the Internet has become an invaluable resource of health-related information, accessible by healthcare professionals and, crucially, by patients themselves. Also, the number of health-related online support groups and discussion forums has mushroomed, raising the question of whether online activity is greater for some diseases than others, and if so why. Researchers
- [Misdiagnosed with Lyme disease?](https://www.meresearch.org.uk/misdiagnosed-lyme-disease/) - The fact that the “umbrella diagnosis” of ME/CFS shares its symptoms with many illnesses will complicate diagnosis and research until a specific biomarker is found. One “overlapping” diagnosis is Lyme disease (caused by Borrelia bacteria transmitted via tick-bites); indeed, there have been suggestions for many years that a subgroup of people with ME/CFS do, in
- [Gut symptoms could be key](https://www.meresearch.org.uk/gut-symptoms/) - On the whole, the gut symptoms that large numbers of people with fibromyalgia and ME/CFS experience are overlooked and under-investigated. They tend to be accepted by healthcare professionals as part of the spectrum of illness, while patients are left to cope with them as best they can. But might the link between gut problems and
- [Diagnosis from a thumb?](https://www.meresearch.org.uk/diagnosis-thumb/) - We’ve said for many years that the discovery of a clinical ‘thumbprint’ for the diagnosis of ME/CFS (or one of its components) would transform the lives of patients and carers. Well, researchers at Osaka University, Japan, have published data suggesting that real thumbs might do the job. They used visible and near-infrared (Vis-NIR) spectroscopy –
- [Markers of immune function](https://www.meresearch.org.uk/markers-immune-function/) - Research into the immunological aspects of ME/CFS has been an ongoing quest for the past 25 years. Findings have included low natural killer cell function, dysregulation of the 2'5'A RNase L antiviral pathway, and a predominance of the Th-2 type of cellular immunity that produces certain cytokines to fight infection. Yet the picture remains unclear,
- [Disability and school absence](https://www.meresearch.org.uk/disability-school-absence/) - Illness in youngsters has a particular poignancy, and it is sometimes forgotten that around 9,000 people under the age of 16 in the UK have ME/CFS at any one time (on current estimates), and there are likely to be similar numbers in other European countries. One research group, at Wilhelmina Children’s Hospital in Utrecht has
- [Does ME/CFS run in families?](https://www.meresearch.org.uk/mecfs-families/) - While there is anecdotal evidence from ME/ CFS patients and carers that the illness can run in families – particularly mothers and their daughters or sons – is there any scientific evidence to back this up? Well, surprisingly there is. One survey of 914 students at the Lyndonville Central School in 1991 found symptoms of
- [Antipsychotic not useful for fibromyalgia pain](https://www.meresearch.org.uk/antipsychotic-fibromyalgia-pain/) - Apparently, some antipsychotics can be effective treatments for a variety of painful conditions, lessening pain as well as the anxiety or depression associated with pain. One of these is amisulpride which has been shown to be effective for pain in animal models, and in patients with burning mouth syndrome. At the Universidad de Granada, Madrid,
- [Low natural killer cells](https://www.meresearch.org.uk/low-natural-killer-cells/) - One of the most consistent abnormalities reported in ME/CFS patients over the past 20 years has been that their natural killer cells are reduced in number and/or have a lower activity than in healthy people. In fact, there was a suggestion at one time that an alternative name for the illness might be ‘low natural
- [Recovery in the PACE trial](https://www.meresearch.org.uk/recovery-in-the-pace-trial/) - In 2012, the UK’s Medical Research Council allocated £1.65 million for biomedical projects into ME/CFS – to widespread congratulations from patients and charities. But several years before, it had funded two large, expensive clinical trials (FINE and PACE) of cognitive behavioural approaches for ME/CFS, and the consequences are still reverberating. The FINE trial found that
- [Rintatolimod trial](https://www.meresearch.org.uk/rintatolimod-trial/) - Clinical trials of non-psychological treatments are quite rare in ME/CFS, so it can be exciting when one comes along, particularly if the most severely affected patients are included. One example was a phase III randomised trial in which the TLR-3 agonist rintatolimod was compared with placebo in 234 people suffering with long-standing, debilitating ME/CFS at
- [Do patients fake it?](https://www.meresearch.org.uk/do-patients-fake-it/) - Problems with memory, concentration, attention and information processing are frequent and disabling symptoms associated with ME/CFS. In fact, around 90% of 2,073 patients in one large study reported cognitive symptoms, which can be made worse by physical or mental exertion. However, there is a view that ME/CFS patients are actually fine – it’s just that
- [A patient’s journey](https://www.meresearch.org.uk/a-patients-journey/) - The British Medical Journal publishes occasional articles by patients about their experiences that offer lessons for doctors. A recent one was by Matilda Hale in conjunction with Professors Julia Newton and David Jones of Newcastle University. Matilda has primary biliary cirrhosis, an autoimmune liver disease with fatigue as a prominent symptom, and some elements of
- [Faecal transplants](https://www.meresearch.org.uk/faecal-transplants/) - Faecal microbiota transplantation (FMT) – the infusion of faecal matter from a healthy person into the colon of an ill person, usually by enema – aims to re-establish a “balanced intestinal flora” to a digestive system where there may be an imbalance. Now, a review has suggested that FMT might benefit chronically ill patients with
- [Personality disorders not a factor](https://www.meresearch.org.uk/personality-disorders-not-a-factor/) - CDSM-IV axis II personality disorders involve ‘maladaptive personality traits’, such as obsessive–compulsive disorder. A study from Belgium reports no increase in such personality disorders in ME/CFS patients compared with people in the community (prevalence 16.3% in each group, in contrast with 58.7% in a comparison group of psychiatric patients). No surprise there then, particularly as
- [Treatment outcomes](https://www.meresearch.org.uk/treatment-outcomes/) - More than 8,000 adults are assessed and treated by specialist NHS ‘CFS/ME’ clinical teams every year in the UK, but little is known about the outcomes for patients. Fortunately, a longitudinal cohort study has just been published, using data from six ‘CFS/ME’ specialist services between January 2005 and December 2009. In the 5 years, 1,643
- [The science of ME](https://www.meresearch.org.uk/science-of-me/) - The science of ME – what do we know? There are over 4000 scientific publications on ME and significant progress has been made in the scientific understanding of the disease, particularly in the last 20 years. This list below gives some of the headline findings: • Inflammation and immune activation are involved. The evidence of
- [Eye Movement Dysfunction](https://www.meresearch.org.uk/eye-movement-dysfunction/) - Problems with eyes and vision are common in people with ME/CFS – yet there is very little formal evidence in the scientific literature that visual symptoms actually exist. To redress the balance, the Vision and Language Research Group, University of Leicester – with funding from ME Research UK and the Irish ME Trust – has
- [Cadmium poisoning? ](https://www.meresearch.org.uk/cadmium-poisoning/) - Heavy metal exposure, such as with mercury in dental amalgam, has been suggested as a cause of ME/CFS in some people. A new hypothesis paper suggests that cadmium (a widespread occupational and environmental pollutant) might be involved in the illness, based on the similarity between the neurological symptoms and the known effects of cadmium on
- [Clinical review of young people](https://www.meresearch.org.uk/review-of-young-people/) - Very little is known about the clinical characteristics of young people attending ME/CFS clinics, so the review of cases examined at Haukeland University Hospital, Norway between 2002 and 2011 was interesting to read. Clinicians examined records of children referred over the decade for “fatigue symptoms”, finding 33 eligible cases – not a huge number, but
- [Black and minority ethnic patients](https://www.meresearch.org.uk/black-and-minority-ethnic-patients/) - It seems that people from the black and minority ethnic population are 2–3 times more likely suffer from ME/CFS than white groups, but (bizarrely) are less likely to be diagnosed with the illness. A group from Institute of Population Health, University of Manchester has been examining why this might be – and what barriers might
- [Human Endogenous Retroviruses](https://www.meresearch.org.uk/human-endogenous-retroviruses/) - Human endogenous retroviruses (HERVs) are remnants of ancient retroviral infections, which may be involved in autoimmune diseases like multiple sclerosis and systemic lupus. As many of the symptoms of ME/CFS overlap with those seen in patients with autoimmune diseases, including gastrointestinal problems which affect 80–85% of people with ME/CFS, it is at least plausible that
- [Experiences of graded exercise therapy](https://www.meresearch.org.uk/graded-exercise-therapy/) - There is a mismatch between the experiences of graded exercise therapy (GET) reported in patient surveys and the evidence from formal clinical trials. In surveys, between 39 and 57% of ME/CFS patients say that GET worsens their symptoms, while the scientific literature paints a picture of moderate benefit and rarely alludes to adverse effects. This
- [Review in Frontiers in Physiology](https://www.meresearch.org.uk/frontiers-in-physiology/) - The Fukuda 1994 definition of CFS ‘nets’ a wide range of patients, yet it remains the most widely recognised definition, particularly in the US, and has been used in the great majority of published research studies. Prof Ben Natelson at the Beth Israel Medical Centre has been at the forefront of work to ‘subgroup’ CFS
- [Review of cognitive symptoms](https://www.meresearch.org.uk/cognitive-review/) - A fine review of the cognitive problems associated with ME/CFS, and the subgroup of patients with postural tachycardia syndrome (POTS), has been published in the Journal “Frontiers in Integrative Physiology”. It is an open access article, so it can be read in full by all. The researchers are from Prof Lenny Jason’s group at De Paul
- [Spotlight on Definitions](https://www.meresearch.org.uk/spotlight-on-definitions/) - There are a number of possible definitions of ME and CFS but each is different, and the terms ME, CFS and their various combinations mean different things to different people today. Many different views and opinions exist about which definition might be ‘best’, but hard data is thin on the ground. Fortunately, there are ongoing
- [Is ME/CFS different in elderly people? ](https://www.meresearch.org.uk/mecfs-in-elderly-people/) - We know that around 200,000 are living with ME/CFS at any one time in the UK, and that most become ill between the ages of 30 and 50, but does age itself make a difference? Do people who are older when they first become unwell have a different type or pattern of disease than people
- [Shortness of breath](https://www.meresearch.org.uk/shortness-of-breath/) - Dyspnoea is shortness of breath or “hunger for air”, and is most often seen in cardiac or respiratory disorders. And it is also commonly reported by people with ME/CFS – in fact, 80% of the 2073 consecutive patients in a Belgian study of 2001 reported dyspnoea after exertion, and because of this the symptom was later
- [ME – What everyone should know ](https://www.meresearch.org.uk/me-what-everyone-should-know/) - • Myalgic encephalomyelitis (ME) is a potentially chronic illness experienced by around 200,000 people in the UK and 1 million in the USA. This makes the disease more prevalent than multiple sclerosis, systemic lupus and HIV infection • The World Health Organization classifies ME as a disorder of the nervous system • Symptoms include
- [Research Collaborative board meeting](https://www.meresearch.org.uk/research-collaborative-meeting/) - The UK ME/CFS Research Collaborative (CMRC) held a board meeting by teleconference on 19th July to discuss relevant issues, such as membership, relationships with other initiatives, research priorities and future conferences. A summary of the meeting is below. Launched earlier this year – see our overview of the event – the aim of the CMRC
- [Perth Civic Reception for International ME Awareness Day](https://www.meresearch.org.uk/perth-civic-reception-for-international-me-awareness-day/) - To mark International ME Awareness Day 2025 and to recognise the 25th anniversary of the foundation of Perth-based ME Research UK, Provost Xander McDade and Perth and Kinross Council honoured the charity with a Civic Reception on 12th May at the Civic Hall, Perth. During the event the principal speakers, Deputy Lieutenant Charlie Gallagher, Provost
- [Thank You to Our Incredible Fundraisers: 2025 in Review](https://www.meresearch.org.uk/thank-you-to-our-incredible-fundraisers-2025-in-review/) - As we reach the end of the year, ME Research UK would like to say a huge thank you to everyone who fundraised for us in 2025.
- [2024/25 - Our Charity Year in Review - Investing](https://www.meresearch.org.uk/2024-25-our-charity-year-in-review-investing/) - Investing in Biomedical Research into the causes, consequences and treatment of ME/CFS Through the provision of funds, we aim to: Be an accessible source of finance for scientifically sound research from researchers (normally) at the beginning of their careers. Fund projects, the results of which produce findings to enrich the research world’s understanding of ME/CFS.
- [2024/25 - Our Charity Year in Review - Influencing](https://www.meresearch.org.uk/2024-25-our-charity-year-in-review-influencing/) - Highlights of the charity year included the following: widespread media, charity sector and official recognition of an increased prevalence figure for ME/CFS arising from PhD-level research funding from ME Research UK. The research and prevalence figure referenced by Dept for Health & Social Care in the ME/CFS Delivery Plan replacing the NICE guideline’s figure, and
- [2024/25 - Our Charity Year in Review - Introduction](https://www.meresearch.org.uk/2024-25-our-charity-year-in-review-introduction/) - Our Vision and Mission ME Research UK’s vision is to end the suffering caused by ME/CFS by investing in high quality, scientific (biomedical) research into the causes, consequences and treatment(s) of the illness. Only through biomedical research will the disease be understood, accepted, and real change to the lived experience of those with the illness
- [Autoimmunity in ME/CFS and long COVID: Porto Conference](https://www.meresearch.org.uk/autoimmunity-in-me-cfs-and-long-covid-porto-conference/) - The 2nd International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID (November 12th-13th) was held in Porto, Portugal, and ME Research UK attended remotely. A highlight from Day 2 was a complex yet fascinating talk on autoimmunity in ME/CFS and long COVID by Prof. Dr Carmen Scheibenbogen, a clinical immunologist and former
- [Could antibodies against EBV be mistakenly attacking the body leading to ME/CFS?](https://www.meresearch.org.uk/could-antibodies-against-ebv-be-mistakenly-attacking-the-body-leading-to-me-cfs/) - Autoimmunity is where the immune system mistakenly targets the body’s own cells. The question of whether it is involved in ME/CFS has been asked for many years, with mixed results. Some studies say “maybe yes,” others say “maybe not.” The study we are summarising in this article falls into the yes camp. A quick recap
- [Human leukocyte antigen in post-infectious disease](https://www.meresearch.org.uk/human-leukocyte-antigen-in-post-infectious-disease/) - Human leukocyte antigen (HLA) genes encode groups of HLA proteins, which are found on the surface of almost every cell and are unique to each individual. When a cell becomes infected by a virus or other pathogen, it breaks down proteins from the invader into smaller fragments called peptides. These peptides are then loaded onto
- [Senedd Cymru/Welsh Parliament debate on ME -  10 December 2025](https://www.meresearch.org.uk/senedd-cymru-welsh-parliament-debate-on-me-10-december-2025/) - Although delayed, the Senedd held a Member's Debate on ME on 10th December 2025 at behest of Adam Price MS (Motion NDM8884) in the chamber of the Senedd and responded to by Jeremy Miles MS Cabinet Secretary for Health and Social Care. The original Motion was To propose that the Senedd: 1. Notes that myalgic
- [Big Give Christmas Challenge 2025 - thank you!](https://www.meresearch.org.uk/big-give-christmas-challenge-2025-thank-you/) - Thank you so much to our Pledgers and to every single donor and supporter who has contributed to making this year’s Big Give Christmas Challenge such a huge success. Believe us when we say that we know it has been a financially tough year for so many people and we are both immensely grateful and
- [2024/25 - Our Charity Year in Review - Informing](https://www.meresearch.org.uk/2024-25-our-charity-year-in-review-informing/) - During 2024/25, the charity continued its role as an independent, science-centred provider of high-quality information and education for key decision-makers, healthcare professionals and those affected directly or indirectly by ME/CFS. In addition to the capacity to provide speakers for external events – to discuss ME Research UK’s role, its achievements and to provide insight into
- [Christmas Cards 2025](https://www.meresearch.org.uk/christmas-cards-2025/) - Our 2025 collection of Christmas cards is now on sale. There are eight designs available this year, and you can buy them via email, phone or post, or at our online shop. Every purchase helps to support our work investing in ME research, and we are grateful to everyone who supports us in this way
- [Winners of the 2025 IACFS/ME and ME Research UK virtual poster competition](https://www.meresearch.org.uk/winners-of-the-2025-iacfs-me-and-me-research-uk-virtual-poster-competition/) - This year, to mark the 25th anniversary of the charity ME Research UK sponsored the 2025 IACFS/ME virtual poster competition. Congratulations to the well-deserved winners of the competition, Ms. Jolien Hendrix and Ms. Anne E. Gardella! Jolien Hendrix is a PhD Candidate in the Department of Physical Therapy, Human Physiology and Anatomy, Faculty of Physical
- [Parliamentary Questions on co-ordinated national research strategy for ME/CFS, awareness and diagnostic tests](https://www.meresearch.org.uk/parliamentary-questions-on-co-ordinated-national-research-strategy-for-me-cfs-awareness-and-diagnostic-tests/) - In a flurry of written questions on ME/CFS, one by Gregory Stafford MP answered by Dr Zubir Ahmed MP Parliamentary Under-Secretary (Department of Health and Social Care), inquired about a national ME/CFS research strategy which although trailling ambition and a determination to accelerate progress, progresses matters not one iota. Q - To ask the Secretary
- [Big Give Christmas Challenge 2025 Now Live](https://www.meresearch.org.uk/big-give-christmas-challenge-2025-now-live/) - The Big Give Christmas Challenge is now LIVE! Your support matters – £1 becomes £2, £5 becomes £10, £10 becomes £20, and so on. Until midday next Tuesday, December 9th, donations will be DOUBLED until donations hit £19,100. Every donation, big or small, makes a difference and will go towards funding vital ME/CFS research. Invest
- [Westminster Hall Debate on ME - 19 November 2025](https://www.meresearch.org.uk/westminster-hall-debate-on-me-19-november-2025/) - A Westminster Hall debate was held on 19th November 2025 at the behest of Tessa Munt MP entitled 'Government support for people with myalgic encephalomyelitis'. This not the first such debate as one was held on 1st May 2024 on the topic '“That this House has considered World ME Day'. In general, these non-contentious events
- [Tessa Munt MP's Questions to Government on ME](https://www.meresearch.org.uk/tessa-mund-mps-questions-to-government-on-me/) - The Westminster Hall debate which was held on 19th November 2025 in Westminster Hall and which was entitled ‘Government support for people with myalgic encephalomyelitis’ included a number of highly pertinent questions by the instigator of teh event - Tessa Munt MP Ms Munt, through her X feed has collated her questions voiced in the
- [Fundraising Focus - December 2025](https://www.meresearch.org.uk/fundraising-focus-december-2025/) - All of us at ME Research UK are so very grateful for the support the charity receives from its fundraisers. It is only because of your support that we can continue to inform, influence, and invest in ME/CFS research globally. Without you, our current projects simply would not be funded. So - join us as
- [ME Research UK - e-newsletter November 2025](https://www.meresearch.org.uk/me-research-uk-e-newsletter-november-2025/) - New funding award: Role of autoimmunity in ME/CFS This month, ME Research UK was delighted to announce that we awarded funding to Prof. Bhupesh Prusty at Riga Stradins University in Latvia for a project investigating the role of autoimmunity in ME/CFS. Following on from his previous work, Prof. Prusty will look at the mechanisms through
- [German 500 million Euro research boost for post-infectious diseases](https://www.meresearch.org.uk/german-500-million-euro-research-boost-for-post-infectiuous-diseases/) - The German Ministry of Research, Technology and Space has announced a National Decade Against Post-Infectious Diseases and pledged a total of half a billion euros for further research into diseases - including ME/CFS - with a stated goal of deciphering their causes and mechanisms and to develop new treatment options. As the Minister stated, "For
- [Planned NHS Specialist ME/CFS Services in Scotland](https://www.meresearch.org.uk/planned-nhs-specialist-me-cfs-services-in-scotland/) - How the Scottish Government’s £4.5m allocation of annual funding for specialist services will enable NICE compliant provision for ME/CFS is a matter of concern for ME Research UK. Indeed, the September 2025 funding announcement failed to mention a commitment to ensure NICE compliant ME/CFS options at all. Given the dire lack of provision of NHS
- [Breakthrough magazine, Autumn 2025](https://www.meresearch.org.uk/breakthrough-magazine-autumn-2025/) - The Autumn 2025 issue of Breakthrough magazine is now available online. This issue includes a look at a newly funded project investigating why ME/CFS affects more women than men, more findings from Dr Leighton Barnden on the structure of the brain in ME/CFS, updated estimates of the UK prevalence of ME/CFS, and much more. Read
- [New call for grant applications](https://www.meresearch.org.uk/new-call-for-grant-applications/) - ME Research UK is pleased to announce an open call for applications for PhD-level research funding, and we welcome proposals from researchers wishing to investigate the causes, consequences and treatment of ME/CFS. In order to help encourage new researchers to embark on a career in the field, funding is available to support full or part-time
- [Supporting individuals with Severe ME: Porto conference](https://www.meresearch.org.uk/supporting-individuals-with-severe-me-porto-conference/) - The 2nd International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID (November 12th-13th) is currently being held in Porto, Portugal, and ME Research UK has been attending remotely. A highlight from this morning’s session was Caroline Kingdon’s insightful talk detailing her experiences visiting people with severe ME from a researcher’s perspective, rather
- [What is a microclot? Porto Conference](https://www.meresearch.org.uk/what-is-a-microclot-porto-conference/) - The 2nd International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID (November 12th - 13th) is currently being held in Porto, Portugal, and ME Research UK has been attending remotely. Professor Resia Pretorius of Stellenbosch University, South Africa, is widely recognised for her work exploring the hypothesis that microclots may contribute to the pathology
- [ME Research UK reaches £5 million milestone in global research investment](https://www.meresearch.org.uk/me-research-uk-reaches-5-million/) - Thanks to the continued support of our generous donors and fundraisers, ME Research UK is delighted to mark our 25th year by surpassing a total of £5 million in research investment. The charity relies entirely on public donations to support our goal of commissioning and funding rigorous scientific research into the causes, consequences and treatment
- [NHS Scotland ME/CFS Provision - NHS Borders](https://www.meresearch.org.uk/nhs-scotland-me-cfs-provision-nhs-borders/) - The inexactitude of how the Scottish Government's £4.5m allocation of annual funding for specialist services will enable NICE compliant provision for ME/CFS led Rhoda Grant MSP (with assistance from ME Research UK) to seek more details via Freedom of Information requests from the Boards in her constituency - Highland, Western Isles, Orkney and Shetland NHS
- [NHS Scotland ME/CFS Provision - NHS Ayrshire and Arran](https://www.meresearch.org.uk/nhs-scotland-me-cfs-provision-nhs-ayrshire-and-arran/) - The inexactitude of how the Scottish Government's £4.5m allocation of annual funding for specialist services will enable NICE compliant provision for ME/CFS led Rhoda Grant MSP (with assistance from ME Research UK) to seek more details via Freedom of Information requests from the Boards in her constituency - Highland, Western Isles, Orkney and Shetland NHS
- [NHS Scotland ME/CFS Provision - NHS Greater Glasgow and Clyde](https://www.meresearch.org.uk/nhs-scotland-me-cfs-provision-nhs-greater-glasgow-and-clyde/) - The inexactitude of how the Scottish Government's £4.5m allocation of annual funding for specialist services will enable NICE compliant provision for ME/CFS led Rhoda Grant MSP (with assistance from ME Research UK) to seek more details via Freedom of Information requests from the Boards in her constituency - Highland, Western Isles, Orkney and Shetland NHS
- [NHS Scotland ME/CFS Provision - NHS Fife](https://www.meresearch.org.uk/nhs-scotland-me-cfs-provision-nhs-fife/) - The inexactitude of how the Scottish Government's £4.5m allocation of annual funding for specialist services will enable NICE compliant provision for ME/CFS led Rhoda Grant MSP (with assistance from ME Research UK) to seek more details via Freedom of Information requests from the Boards in her constituency - Highland, Western Isles, Orkney and Shetland NHS
- [NHS Scotland ME/CFS Provision - NHS Lanarkshire](https://www.meresearch.org.uk/nhs-scotland-me-cfs-provision-nhs-lanarkshire/) - The inexactitude of how the Scottish Government's £4.5m allocation of annual funding for specialist services will enable NICE compliant provision for ME/CFS led Rhoda Grant MSP (with assistance from ME Research UK) to seek more details via Freedom of Information requests from the Boards in her constituency - Highland, Western Isles, Orkney and Shetland NHS
- [NHS Scotland ME/CFS Provision - NHS Lothian](https://www.meresearch.org.uk/nhs-scotland-me-cfs-provision-nhs-lothian/) - The inexactitude of how the Scottish Government's £4.5m allocation of annual funding for specialist services will enable NICE compliant provision for ME/CFS led Rhoda Grant MSP (with assistance from ME Research UK) to seek more details via Freedom of Information requests from the Boards in her constituency - Highland, Western Isles, Orkney and Shetland NHS
- [NHS Scotland ME/CFS Provision - NHS Grampian](https://www.meresearch.org.uk/nhs-scotland-me-cfs-provision-nhs-grampian/) - The inexactitude of how the Scottish Government's £4.5m allocation of annual funding for specialist services will enable NICE compliant provision for ME/CFS led Rhoda Grant MSP (with assistance from ME Research UK) to seek more details via Freedom of Information requests from the Boards in her constituency - Highland, Western Isles, Orkney and Shetland NHS
- [NHS Scotland ME/CFS Provision - NHS Dumfries and Galloway](https://www.meresearch.org.uk/nhs-scotland-me-cfs-provision-nhs-dumfries-and-galloway/) - The inexactitude of how the Scottish Government's £4.5m allocation of annual funding for specialist services will enable NICE compliant provision for ME/CFS led Rhoda Grant MSP (with assistance from ME Research UK) to seek more details via Freedom of Information requests from the Boards in her constituency - Highland, Western Isles, Orkney and Shetland NHS
- [New study on the role of autoimmunity in ME/CFS](https://www.meresearch.org.uk/new-study-on-the-role-of-autoimmunity-in-me-cfs/) - ME Research UK is delighted to announce that we have awarded funding to Prof. Bhupesh Prusty at Riga Stradins University in Latvia for a project investigating the role of autoimmunity in ME/CFS. Following on from his previous work, Prof. Prusty will look at the mechanisms through which immunoglobulins from ME/CFS patients can cause dysfunction of
- [Update from Brussels](https://www.meresearch.org.uk/update-from-brussels/) - Prof. Jo Nijs and Jente Van Campenhout at Vrije Universiteit Brussel are now two years into their PhD-level research project investigating the links between mitochondrial function and the autonomic nervous system in ME/CFS. They recently updated us on their progress and there are currently 51 people with ME/CFS and 27 healthy controls enrolled in the study,
- [Parliamentary Answers Confirm no delivery for ME/CFS research](https://www.meresearch.org.uk/parliamentary-answer-confirms-no-delivery-for-me-cfs-research/) - When Dr Zubir Ahmed MP Parliamentary Under-Secretary (Department of Health and Social Care) responded to Tom Morrison MP's Written questions (UIN 86002, UIN 86003, and UIN 86004) on government plans re biomedical research into ME/CFS and its funding, it encapsulated neatly many previous answers about the topic and showed clearly that the initial May 2022
- [What is MCAS?](https://www.meresearch.org.uk/what-is-mcas/) - Mast cell activation syndrome (MCAS) is a condition where mast cells – immune cells that normally help protect the body – become overactive. When triggered, they release chemicals such as histamine, which can cause a wide variety of symptoms across different body systems, many of which overlap with ME/CFS symptoms. It is thought that activation
- [Fundraising Focus - November 2025](https://www.meresearch.org.uk/fundraising-focus-november-2025/) - All of us at ME Research UK are so very grateful for the support the charity receives from its fundraisers. It is only because of your support that we can continue to inform, influence, and invest in ME/CFS research globally. Without you, our current projects simply would not be funded. So - join us as
- [ME Research UK e-newsletter – October 2025](https://www.meresearch.org.uk/me-research-uk-e-newsletter-october-2025/) - Dysautonomia Awareness Month Throughout October, ME Research UK marked Dysautonomia Awareness Month. Dysautonomia is an umbrella term for conditions that affect the autonomic nervous system, of which there are many, such as postural orthostatic tachycardia syndrome (PoTS), orthostatic intolerance and vasovagal syncope. Individuals with ME/CFS often report debilitating dysautonomia-related symptoms, which add an extra layer
- [Dysautonomia – Our articles](https://www.meresearch.org.uk/dysautonomia-our-articles/) - Dysautonomia is an umbrella term that encompasses a broad range of conditions that affect the autonomic nervous system – the body system that regulates automatic functions such as blood pressure, heart rate, temperature, and digestion. There are many conditions that fall under the dysautonomia umbrella such as postural orthostatic tachycardia syndrome, orthostatic intolerance, orthostatic hypotension,
- [ME Research UK e-newsletter - July 2025](https://www.meresearch.org.uk/me-research-uk-e-newsletter-july-2025/) - A jam-packed research-centred July ME Research UK launches annual ME Research Day This year, ME Research UK marks 25 years since its foundation. To recognise this, the charity launched ME Research Day. The day – the 13th of July 2025 – was chosen as it marked the 70th anniversary of the outbreak of a ‘mystery
- [Gut disorders, dysautonomia, & ME/CFS](https://www.meresearch.org.uk/gut-disorders-dysautonomia-me-cfs/) - Dysautonomia, dysfunction of the autonomic nervous system, can significantly impact the gastrointestinal system by disrupting control over gut function, leading to symptoms like nausea, abdominal pain, bloating, constipation, and diarrhoea. Individuals with ME/CFS, frequently report gut issues or have dysautonomia-related comorbidities, such as postural orthostatic tachycardia syndrome (PoTS). Gastroparesis – delayed stomach emptying – is
- [What is PoTS?](https://www.meresearch.org.uk/potsandmecfs/) - Postural Orthostatic Tachycardia Syndrome (PoTS) is a debilitating, under-recognised condition and co-morbidity of ME/CFS. It is characterised by an abnormal rise in heart rate, in addition to other symptoms, when a person transitions to an upright position. The phenomenon of experiencing symptoms when upright is called orthostatic intolerance. The name PoTS breaks down as follows:
- [Parliamentary Motion on ME/CFS Delivery Plan limitations](https://www.meresearch.org.uk/parliamentary-motion-on-me-cfs-delivery-plan-limitations/) - Now open for Honourable Members to sign, and initiated by Tom Morrison MP, is an Early Day Motion (EDM 1852) which brings to Westminster the limitations of the ME/CFS Delivery Plan and, in particular its research points. These points largely mirrow the weaknesses ME Research UK voiced upon publication of the Plan in July 2025.
- ['Altered effort preference and deconditioning are not valid explanations of ME/CFS'](https://www.meresearch.org.uk/altered-effort-preference-and-deconditioning-are-not-valid-explanations-of-me-cfs/) - A commentary from a group of researchers, including Todd Davenport, Carmen Scheibenbogen, Karl Tronstad, Jonas Berquist, David Tuller, Uta Behrends, Mark Vink, and Luis Nacul, has challenged conclusions drawn in an NIH paper – which ME Research UK has written up in detail – published in February 2024, written by Brian Walitt and colleagues. Walitt
- [NHS Scotland ME/CFS Provision - NHS Forth Valley](https://www.meresearch.org.uk/nhs-scotland-me-cfs-provision-nhs-forth-valley-2/) - The inexactitude of how the Scottish Government's £4.5m allocation of annual funding for specialist services will enable NICE compliant provision for ME/CFS led Rhoda Grant MSP (with assistance from ME Research UK) to seek more details via Freedom of Information requests from the Boards in her constituency - Highland, Western Isles, Orkney and Shetland NHS
- [Ehlers-Danlos Syndromes (EDS) and ME/CFS](https://www.meresearch.org.uk/ehlers-danlos-syndromes-eds-and-me-cfs/) - Ehlers-Danlos Syndromes (EDS) is an umbrella term for a group of conditions that affect the connective tissues of the body, one of the most well-known being hypermobile EDS (hEDS). It is thought that there is a higher proportion of EDS in the ME/CFS community compared with the general population, but it is also worth noting
- [4 weeks to go - Big Give 2025](https://www.meresearch.org.uk/4-weeks-to-go-big-give-2025/) - This year’s Big Give Christmas Challenge will run from midday Tuesday 2nd December to midday Tuesday 9th December 2025. Thanks to our Pledgers, the first £19,100 donated on the Big Give website will be DOUBLED. The Big Give accept donations from £1 upwards. How were Big Give 2024 funds invested? Thanks to the generosity of
- [Westminster debate on PoTS](https://www.meresearch.org.uk/westminster-debate-on-pots/) - Labour MP for Lancaster and Wyre, Cat Smith, led the Westminster debate on postural orthostatic tachycardia syndrome (PoTS) emphasising that PoTS is not a rare disease, yet individuals with PoTS are “falling through the cracks” of a healthcare system unprepared to recognise or support them. Drawing on her own experience and those of constituents across the
- [KiltWalk 2026 - Registration Open](https://www.meresearch.org.uk/kiltwalk-2026-registration-open/) - Kiltwalk is a unique charity that enables walkers to raise money for any Scottish charity and, as ME Research UK is based in Perth, we are eligible to participate – but we need your help. Thanks to Sir Tom Hunter and the Hunter Foundation every pound raised by our walkers will be used to support
- [Development of a blood-based biomarker for ME/CFS](https://www.meresearch.org.uk/development-of-a-blood-based-biomarker-for-me-cfs/) - Key points A team of researchers have identified a blood test which, in a small exploratory study, was found to diagnose ME/CFS with 96% accuracy. The test looks at ‘chromosome conformations’ (the way genetic material is folded in cells), and whether these are specific to a disease. Importantly, variations of the test have been used
- [PoTS Awareness Day 2025](https://www.meresearch.org.uk/pots-awareness-day-2025/) - PoTS Awareness Day, October 25th, aims to raise awareness about postural orthostatic tachycardia syndrome (PoTS), an under-recognised and debilitating condition. PoTS is a subset of the broader category of orthostatic intolerance, where symptoms are mainly experienced when an individual transitions to an upright position. Common symptoms include dizziness/light-headedness and palpitations; however, the list is extensive. These
- [PoTS Awareness Day 2023](https://www.meresearch.org.uk/pots-awareness-day/) - PoTS Awareness Day on 25 October aims to raise awareness about Postural Orthostatic Tachycardia Syndrome (PoTS), an under-recognised and debilitating condition. PoTS primarily leads to 'orthostatic intolerance', where symptoms are mainly experienced upon transitioning to an upright position. These symptoms can range from mild to severe, often fluctuating from day to day. Common symptoms include
- [NHS Scotland ME/CFS Provision - NHS Forth Valley](https://www.meresearch.org.uk/nhs-scotland-me-cfs-provision-nhs-forth-valley/) - The inexactitude of how the Scottish Government's £4.5m allocation of annual funding for specialist services will enable NICE compliant provision for ME/CFS led Rhoda Grant MSP (with assistance from ME Research UK) to seek more details via Freedom of Information requests from the Boards in her constituency - Highland, Western Isles, Orkney and Shetland NHS
- [Orthostatic intolerance and ME/CFS](https://www.meresearch.org.uk/orthostatic-intolerance-and-me-cfs/) - Orthostatic intolerance, a common issue for people with ME/CFS, refers to when the body fails to properly compensate for moving to an upright position, which is thought to result in reduced blood flow to the brain and symptoms such as lightheadedness, fatigue, and weakness. A subset of those with orthostatic intolerance also meet the criteria
- [Update from Daphne Jackson Fellow, Dr Alkisti Manousaki](https://www.meresearch.org.uk/update-from-daphne-jackson-fellow-dr-alkisti-manousaki/) - ME Research UK has received an update from Dr Alkisti Manousaki, who was awarded a Daphne Jackson Fellowship at the University of Leicester, for a project – jointly funded by ME Research UK and the Medical Research Council – investigating the genetic and cellular clues that may explain why ME/CFS affects more women than men.
- [NHS Scotland ME/CFS Provision - NHS Western Isles](https://www.meresearch.org.uk/nhs-scotland-me-cfs-provision-nhs-western-isles/) - The inexactitude of how the Scottish Government's £4.5m allocation of annual funding for specialist services will enable NICE compliant provision for ME/CFS has led Rhoda Grant MSP (with assistance from ME Research UK) to seek more details via Freedom of Information requests from the Boards in her constituency - Highland, Western Isles, Orkney and Shetland
- [Orthostatic intolerance, cerebral blood flow, and ME/CFS](https://www.meresearch.org.uk/orthostatic-intolerance-cerebral-blood-flow-and-me-cfs/) - Background Blood vessels transport oxygen-rich blood throughout the body, ensuring proper organ function. The brain, which usually consumes around 20% of the body's total oxygen supply, relies on a stable blood flow for optimal performance. Cerebral (brain) blood flow (CBF) is regulated by the autonomic nervous system, which also controls cardiac (heart) output – the
- [Can treatment for individuals with ME/CFS and PoTS be more targeted?](https://www.meresearch.org.uk/can-treatment-for-individuals-with-me-cfs-and-pots-be-more-targeted/) - Many individuals with ME/CFS have postural orthostatic tachycardia syndrome (PoTS). PoTS is not just a condition that causes tachycardia (increased heart rate), rather individuals with PoTS have a myriad of other symptoms, such as cognitive difficulties, temperature sensitivity and gut problems. Whilst multiple mechanisms have been recognised, the pathophysiology of PoTS is still not fully
- [Welsh Parliamentary Motion on ME Debate postponed](https://www.meresearch.org.uk/welsh-parliamentary-motion-on-me-to-be-debated/) - Adam Price MS has secured a Member's Debate before the Welsh Parliament/Senedd Cymru which wwas due to be held on 15th October 2025 but has been postponed by a month to 26th November 2025 instead. The Motion (NDM8884) was supported by 16 other elected members - Aelod o'r Senedd (AS) - of the 60 strong
- [NHS Scotland ME/CFS Provision - NHS Highland](https://www.meresearch.org.uk/nhs-scotland-me-cfs-provision-nhs-highland/) - The inexactitude of how the Scottish Government's £4.5m allocation of annual funding for specialist services will enable NICE compliant provision for ME/CFS has led Rhoda Grant MSP (with assistance from ME Research UK) to seek more details via Freedom of Information requests from the Boards in her constituency - Highland, Western Isles, Orkney and Shetland
- [Kiltwalk 2026 - dates announced](https://www.meresearch.org.uk/kiltwalk-2026-dates-announced/) - Kiltwalk is a unique charity that enables walkers to raise money for any Scottish charity and, as ME Research UK is based in Perth, we are eligible to participate – but we need your help. Thanks to Sir Tom Hunter and The Hunter Foundation every pound raised is used to support teh work of charities.
- [NHS Scotland ME/CFS provision - NHS Orkney](https://www.meresearch.org.uk/nhs-scotland-me-cfs-provision-nhs-orkney/) - The inexactitude of how the Scottish Government's £4.5m allocation of annual funding for specialist services will enable NICE compliant provision for ME/CFS has led Rhoda Grant MSP (with assistance from ME Research UK) to seek more details via Freedom of Information requests addressed to the Boards in her constituency - Highland, Western Isles, Orkney and
- [What is small fibre neuropathy (SFN)?](https://www.meresearch.org.uk/what-is-small-fibre-neuropathy-sfn/) - Small fibre neuropathy (SFN) is a condition where damage occurs to small nerve fibres, characterised by severe pain typically beginning in the extremities. It is a type of peripheral neuropathy i.e. affects nerves outside of brain and spinal cord. Whilst it is a lesser known entity therefore requires a greater scientific evidence base, research suggests
- [ME/CFS debate in Denmark: is the disease biomedical or functional?](https://www.meresearch.org.uk/debate-in-denmark/) - A recent debate in the Danish journal Sundhedspolitisk Tidsskrift highlighted a contentious discussion over how ME/CFS is understood in the Kingdom. Across several opinion pieces around four themes, the discussion explored the question of whether ME/CFS should be viewed as a biomedical disease or as a functional disorder.
- [Does your fundraiser need help with expenses?](https://www.meresearch.org.uk/does-your-fundraiser-need-help-with-expenses/) - Give as you Live’s Grant for Good invites fundraisers to apply for a share of £2,500 to help with expenses related to a dream fundraising challenge.
- [Our response to the DHSC interim delivery plan on ME/CFS](https://www.meresearch.org.uk/our-response-to-the-dhsc-interim-delivery-plan-on-me-cfs/) - ME Research UK has welcomed the release by the UK Department of Health and Social Care (DHSC) of ‘My full reality: the interim delivery plan on ME/CFS‘. The Department is seeking responses to the plan via an online survey, which you can complete here. We have completed the sections of the survey which relate to research, and
- [Specialised care for people with severe or very severe ME/CFS in Norway](https://www.meresearch.org.uk/specialised-care-for-people-with-severe-or-very-severe-me-cfs-in-norway/) - Røysumtunet, a private clinic and not for profit institution founded in 1965 in Norway, is primarily known for providing care to patients with severe epilepsy. However, in recent years, the institution has expanded to include patients with brain injuries, dementia, certain psychiatric conditions, and developmental disorders – and now, 12 single rooms are available for
- [Nobel Prize in Physiology or Medicine awarded to scientists who discovered regulatory T cells](https://www.meresearch.org.uk/nobel-prize-in-physiology-or-medicine-awarded-to-scientists-who-discovered-regulatory-t-cells/) - The Nobel Prize in Physiology or Medicine has been awarded to a team of researchers – Mary E. Brunkow, Fred Ramsdell, and Shimon Sakaguchi – for their work relating to the immune system. Although this work does not directly relate to ME/CFS, in 1995, Shimon Sakaguchi discovered a previously unknown class of immune cells –
- [Progress at Australian ME/CFS Guideline Development Committee](https://www.meresearch.org.uk/progress-at-australian-me-cfs-guideline-development-committee/) - Australia's National Health and Medical Research Council (NHMRC) has never issued or approved guidelines for ME/CFS and there are no current Australian clinical practice guidelines for ME/CFS. In August 2024, the Department of Health and Aged Care allocated AUS$1.1 million to NHMRC to develop such clinical practice guidelines with the goal being to improve diagnosis,
- ["Establishing a research hub for ME/CFS would not provide the same level of flexibility"](https://www.meresearch.org.uk/establishing-a-research-hub-for-me-cfs-would-not-provide-the-same-level-of-flexibility/) - When Tom Morrison MP tabled a Written Question (UIN 72045) to the Department for Health and Social Care on "how much funding his Department has allocated for Myalgic encephalomyelitis research in each of the last five years" the long in words but short on figures and specifics from Ashley Dalton MP, Parliamentary Under-Secretary of State
- [Another Name? Systemic Exertion Intolerance Disease (SEID) resurrected](https://www.meresearch.org.uk/another-name-systemic-exertion-intolerance-disease-seid-resurrected/) - It is fair to say that when the Institute of Medicine (IOM), now the National Academy of Medicine (NAM), published a report on 10th February 2015 on ME/CFS "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness" that the IOM's committee's summary of the evidence base and proposed redefining of diagnostic criteria was welcomed and the
- [What is Dysautonomia?](https://www.meresearch.org.uk/what-is-dysautonomia/) - Many individuals with ME/CFS report symptoms of dysautonomia, but what is dysautonomia? Let's break down the word "Dys" means abnormal in Greek and "autonomia" refers to the regulation of the autonomic nervous system, which controls automatic body functions like blood pressure, heart rate, and digestion. Hence dysautonomia refers to conditions that affect the autonomic nervous
- [Dysautonomia Awareness Month 2025](https://www.meresearch.org.uk/dysautonomia-awareness-month-2025/) - October is Dysautonomia Awareness Month, an annual campaign launched by Dysautonomia International to raise awareness about the condition, reduce diagnostic delays, improve resources and research, and advocate for patients. Without effective management, dysautonomia can be highly debilitating, significantly impacting quality of life. For individuals with ME/CFS, who often also report symptoms of dysautonomia, this adds
- [Fundraising Focus - October 2025](https://www.meresearch.org.uk/fundraising-focus-october-2025/) - All of us at ME Research UK are so very grateful for the support the charity receives from its fundraisers. It is only because of your support that we can continue to inform, influence, and invest in ME/CFS research globally. Without you, our current projects simply would not be funded. So - join us as
- [ME Research UK e-newsletter – September 2025](https://www.meresearch.org.uk/me-research-uk-e-newsletter-september-2025/) - ME Research UK and the ME Association award grant for developing diagnostic test This month we announced that ME Research UK and the ME Association have awarded funding to Dr Fatima Labeed and Dr Jackie Cliff to develop a diagnostic test for ME/CFS, expanding on their initial study showing electrical differences in blood cells from
- [Swiss action on ME/CFS and Long-COVID](https://www.meresearch.org.uk/swiss-action-on-me-cfs-and-long-covid/) - The Swiss Council of States has passed legislation, initiated by National Council member Lorenz Hess, launching a national strategy covering ME/CFS and long-COVID. The fact that the proposal was adopted without discussion in both chambers of the Swiss Federal parliament demonstrates that the need for action was recognised as both urgent and necessary by Swiss
- [Run for a Cause: Place Available for the 2026 Brighton Marathon!](https://www.meresearch.org.uk/run-for-a-cause-place-available-for-the-2026-brighton-marathon/) - Want to help make a real difference or know someone who would? ME Research UK has one guaranteed charity places available for the 2026 Brighton Marathon – and we would love for you to join our fundraising team! The 2026 Brighton Marathon takes place on Sunday 12th April with the route starting in Preston Park
- [Free samples from the UK ME/CFS Biobank – Winners announced](https://www.meresearch.org.uk/free-samples-from-the-uk-me-cfs-biobank-winners-announced/) - Earlier this year, the team at the UK ME/CFS Biobank asked ME Research UK to highlight a new initiative, referred to on X as the ‘#CureME Free Sample Campaign’, which offered high-quality samples from the Biobank at no cost to those with the best outline proposals. This week the winners of this competition were announced,
- [Burden of disease in ME/CFS](https://www.meresearch.org.uk/burden-of-disease-in-me-cfs/) - Key points The ‘burden’ of a disease – the impact that a health problem has in a population – has been found to be high for ME/CFS in countries such as Australia, US, and Germany. However, less is known about the impact of the disease internationally. A team of researchers in Hamburg used scoping review
- [Irish ME/CFS Association Award](https://www.meresearch.org.uk/irish-me-cfs-association-award/) - ME Research UK is delighted to have been awarded €14,000 by The Irish ME/CFS Association in its latest round of support for ME research. The award is made by the Trustees taking into account the Association members votes – which makes this grant so very special. Members were asked how they would wish monies from
- [Scottish Government Funding for ME, CFS and Long COVID services](https://www.meresearch.org.uk/scottish-government-funding-for-me-cfs-and-long-covid-services/) - When the draft Scottish Budget for 2025/26 was delivered by Shona Robison MSP, Scotland’s Finance Secretary to Holyrood on 4th December 2024 it contained a commitment for an ‘additional £4.5 million to deliver new specialist support across the country for Long Covid, ME, Chronic Fatigue, and other similar conditions.’ By May 2025, MSP Jackie Bailey
- [Factsheet: The immune system and ME/CFS](https://www.meresearch.org.uk/factsheet-the-immune-system-and-me-cfs/) - This article is written for GPs and other healthcare professionals. ME Research UK has provided a print-friendly version that individuals can download and share with their healthcare provider. What is ME/CFS? Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating condition that significantly impacts quality of life. ME/CFS is not just fatigue. According to the NICE
- [Genes involved in neurodevelopment are linked to ME/CFS](https://www.meresearch.org.uk/genes-involved-in-neurodevelopment-are-linked-to-me-cfs/) - Prof. Brett Lidbury and colleagues at the Australian National University and other institutions published findings of their ME Research UK-funded study in June, analysing the whole-exome sequences of people with ME/CFS. Variants in a number of genes were significantly associated with ME/CFS, compared with a matched population. These genes are involved in several processes in
- [Researcher Circle](https://www.meresearch.org.uk/researcher-circle-2/) - On the 15th of September, the second meeting of ME Research UK’s ‘Researcher Circle’ took place online. The Circle meets every other month, and alternates between more structured sessions with a speaker followed by time for questions and discussion, and informal ‘catch-ups’ which aim to provide a friendly forum to discuss progress and challenges faced, and
- [Immune system and ME/CFS - key facts](https://www.meresearch.org.uk/immune-system-and-me-cfs-key-facts/) - Whilst no definitive diagnostic test or biomarker has yet been identified for ME/CFS, research shows multiple biological abnormalities, with strong evidence for immune system involvement. Changes in the immune system may help explain why individuals with ME/CFS experience: Ongoing “flu-like” symptoms Increased frequency of infections (e.g. colds) compared to before ME/CFS onset Flare-ups/worsening of ME/CFS
- [Similar mechanisms of exercise limitation identified for ME/CFS and long COVID.](https://www.meresearch.org.uk/similar-mechanisms-of-exercise-limitation-identified-for-me-cfs-and-long-covid/) - A small exploratory study has identified that skeletal muscle oxygen diffusion – an important process in the body which ensures the delivery of oxygen to muscle cells for energy production – may be impaired in both people with ME/CFS and in those with long COVID. The research team recruited 37 people: 11 meeting the IoM
- [MRI study progress report](https://www.meresearch.org.uk/mri-study-progress-report/) - Dr Leighton Barnden and his team at Griffith University have just completed the first year of their ME Research UK-funded study using MRI to track changes in the brain over time in people with ME/CFS. They got in touch to update us on their progress. As well as optimising the MRI scanning protocols being used,
- [Freedom of information request to the DHSC](https://www.meresearch.org.uk/freedom-of-information-request-to-the-dhsc/) - Under the Freedom of Information Act (FOIA), a law which allows members of the public to ask to see information held by public authorities, ME Research UK recently contacted the Department of Health and Social Care (DHSC) for information relating to the following: What guidance, formal or otherwise is there for use of a particular
- [Will metformin have a role in treating ME/CFS and long COVID?](https://www.meresearch.org.uk/will-metformin-have-a-role-in-treating-me-cfs-and-long-covid/) - A review published in ACS Pharmacology & Translational Science explored the potential role of first-line type 2 diabetes medication - metformin - in the treatment of ME/CFS and long COVID. Whilst, no diabetic medication is currently approved for these conditions, there has been sustained interest in their effects. The review, with lead author Dr David
- [The Netherlands fund additional 7 ME/CFS Studies](https://www.meresearch.org.uk/netherlands-fund-additional-7-me-cfs-studies/) - The extent of the vision and investment into ME/CFS research in the Netherlands is continuing apace. The funding of two consortia - ME/CFS Lines and the Dutch ME/CFS Cohort and Biobank consortium (NMCB) and a number of sub-projects has already been made but on 29th August 2025 ZonMw announced funding for a further 7 studies.
- [Natural killer cells, genes, and ME/CFS](https://www.meresearch.org.uk/natural-killer-cells-genes-and-me-cfs/) - Cytotoxicity is the ability of a cell to damage another cell. Natural killer (NK) cells use this ability to destroy infected and diseased cells – a function that is crucial in the immune system. Research has previously found that the most consistent immune-related finding in ME/CFS research is reduced NK cell cytotoxicity. This suggests that NK cells
- [Genetics and ME/CFS - key terms](https://www.meresearch.org.uk/genetics-and-me-cfs/) - Genetics (the study of genes) is becoming increasingly important in ME/CFS research, especially considering the ongoing work of the DecodeME study and release of their pre-print results. Therefore, to help understand genetics research, we have provided simple explanations of key terms. What is DNA? Most cells in the human body contain DNA – molecules that
- [GLP-1 receptor agonist medications and ME/CFS](https://www.meresearch.org.uk/glp-1-receptor-agonist-medications-and-me-cfs/) - The well-known, Ozempic (brand name for semaglutide), belongs to a group of drugs known as GLP-1 receptor agonists. GLP-1 receptor agonists are used for type 2 diabetes and weight loss, and mimic the way the naturally occurring hormone, GLP-1, acts in the body. Now, fibromyalgia is making a potential appearance on this management list, according
- [AI in ME/CFS research – BioMapAI](https://www.meresearch.org.uk/ai-in-me-cfs-research-biomapai/) - The use of artificial intelligence (AI) has rapidly advanced in recent years, enhancing our ability to process large amounts of data, identify patterns, and make useful predictions. AI takes advantage of large amounts of data and can rapidly search for patterns, utilise the data for specific outputs, and predict future possibilities based on information available
- [No additional funds envisaged to implement ME/CFS Delivery Plan.](https://www.meresearch.org.uk/no-additional-funds-envisged-to-implement-me-cfs-delivery-plan/) - In a slew of recent parliamentary questions, further details are emerging on the government's stance on funding the Delivery Plan for ME/CFS, and of ME/CFS research in general. On 29th August 2025 Anna Gelderd MP tabled a question (UIN 73036) To ask the Secretary of State for Health and Social Care, whether his Department plans
- [Cognitive impairments in ME/CFS and long COVID](https://www.meresearch.org.uk/cognitive-impairments-in-me-cfs-and-long-covid/) - “Individuals with ME/CFS, particularly those with long COVID, are especially prone to memory and concentration difficulties” finds a study looking at data from the the National Health Interview Survey (NHIS) in the US. Also known as 'brain fog', cognitive difficulties are common and life-limiting for people with ME/CFS. In the 2021 NICE guideline, cognitive difficulties include “problems
- [Early Day Motion on ME/CFS](https://www.meresearch.org.uk/early-day-motion-on-me-cfs/) - Tom Morrison MP has tabled an Early day Motion in the House of Commons calling on the government to act in relation to the recommendations in this July's Delivery Plan for ME/CFS. That this House welcomes the publication by the Department of Health and Social Care of the Final Delivery Plan on Myalgic Encephalomyelitis/Chronic Fatigue
- [GPs, Long-COVID and ME/CFS - Parliamentary Question](https://www.meresearch.org.uk/gps-long-covid-and-me-cfs-parliamentary-question/) - Prevalance figures for ME/CFS have recently been subject to debate and upgrade based on ME-Research UK funded researcher's work. Debate will be ongoing especially in light of the numbers of people who either are, or could be, diagnosed with ME/CFS due to the high overlap between symptoms of long-COVID and those of ME/CFS. Although it
- [New funding to advance the development of a diagnostic test for ME/CFS](https://www.meresearch.org.uk/new-funding-to-advance-the-development-of-a-diagnostic-test-for-me-cfs/) - ME Research UK and the ME Association are excited to build on our October 2023 partnership, when we jointly funded a 12-month study exploring electrical differences in blood cells from people with ME/CFS. This next phase of funding will refine and expand the initial work, giving us deeper insights into the biology of ME/CFS and
- [Non-Answer to question of funding for ME/CFS research](https://www.meresearch.org.uk/non-answer-to-question-of-funding-for-me-cfs-research/) - No doubt spurred by the forthcoming NIHR/MRC Showcase event for post acute infection conditions research which will be held on 6 November 2025 and which was promised in the ME/CFS Delivery Plan, Jo Platt MP (Chair of APPG on ME) tabled a parliamentary question (UIN 70927) specifically on research funding. To ask the Secretary of
- [Big Give Christmas Challenge - Pledge phase ends](https://www.meresearch.org.uk/big-give-christmas-challenge-pledge-phase-ends/) - Thanks to the wonderful support ME Research UK has received we have a Pledge Pot of £19,100 available to match-fund donations received during the Christmas Challenge which runs from 2nd – 9th December 2025. During that week donations to our research work via the Big Give site will be DOUBLED from our Pledge Pot until
- [Pyridostigmine and hand grip strength](https://www.meresearch.org.uk/pyridostigmine-and-hand-grip-strength/) - Hand grip strength – a measure of the force exerted by hand muscles when gripping an object – has been found to correlate with symptom severity in people with ME/CFS. Therefore, a small study of 20 participants published in the journal ‘Frontiers of Neuroscience’ aimed to assess whether a drug called pyridostigmine might increase hand
- [ME/CFS and Epstein-Barr Virus (EBV) - some facts](https://www.meresearch.org.uk/me-cfs-and-epstein-barr-virus-ebv-some-facts/) - What is Epstein-Barr Virus (EBV) and how is it related to ME/CFS? Many individuals with ME/CFS state that an episode of infectious mononucleosis, i.e. glandular fever, preceded the development of their ME/CFS. Hence, it is no surprise that Epstein-Barr virus (EBV), the virus that causes infectious mononucleosis, has generated much interest in ME/CFS research. How
- [For those too often dismissed, Rosie takes on the London Marathon](https://www.meresearch.org.uk/for-those-too-often-dismissed-rosie-takes-on-the-london-marathon/) - Next year, Rosie won’t just be a spectator at the London Marathon – she’ll be on the course herself, running 26.2 miles in aid of ME Research UK.
- [Haptoglobin and ME/CFS](https://www.meresearch.org.uk/haptoglobin-and-me-cfs/) - A study comparing 140 people with ME/CFS and 44 matched sedentary controls has found that haptoglobin (Hp) – a protein that plays a crucial role in recycling iron and protecting the body from the harm caused during oxidative stress – may be linked to post exertional malaise (PEM). In this study the majority of those
- [Fundraising Focus - September 2025](https://www.meresearch.org.uk/fundraising-focus-september-2025/) - All of us at ME Research UK are so very grateful for the support the charity receives from its fundraisers. It is only because of your support that we can continue to inform, influence, and invest in ME/CFS research globally. Without you, our current projects simply would not be funded. So - join us as
- [The potential role of the HPA axis and orexin system in ME/CFS](https://www.meresearch.org.uk/the-potential-role-of-the-hpa-axis-and-orexin-system-in-me-cfs/) - Earlier this week, ME Research UK highlighted an article which, despite a small sample size, suggested that people with ME/CFS may have dysregulation of the hypothalamic-pituitary-adrenal (HPA) axis. Notably, the HPA plays a critical role in regulating stress responses, immune function, and energy production and utilisation (metabolism) – all systems which have been linked to
- [ME Research UK e-newsletter – August 2025](https://www.meresearch.org.uk/me-research-uk-e-newsletter-august-2025/) - ME Research UK and the Daphne Jackson Trust award a Fellowship ME Research UK and the Daphne Jackson Trust are delighted to announce that we have awarded a Fellowship to Dr Alkisti Manousaki, at the University of Leicester, for a project investigating the genetic and cellular clues that may explain why ME/CFS affects more women
- [DeCodeME - Initial Results Published](https://www.meresearch.org.uk/decodeme-initial-results-published/) - Initial results from DecodeME's genetic study have been released. The study is led by Professor Chris Ponting of the Medical Research Council Human Genetics Unit, University of Edinburgh, and was funded by the Medical Research Council and the National Institute for Health Research. DecodeME is a genome-wide association study (or GWAS) which aims to uncover
- [US Federal Funding for ME/CFS research Update](https://www.meresearch.org.uk/us-federal-funding-for-me-cfs-research-update/) - Possible positive news from the United States Congress on prospects of having the ME/CFS Roadmap fully endorsed, funded and operationalised. The Senate has officially recognised the ME/CFS Research Roadmap — and has directing the NIH to create a detailed implementation plan. Next stages are that the House of Representatives is expected to release its own
- [Big Give 2025 - Pledge Target Increased](https://www.meresearch.org.uk/big-give-2025-pledge-target-increased-2/) - Thanks to our wonderful supporters ME Research UK has reached our already increased Pledge target for this year's Christmas Challenge - a day earlier than the original deadline. Yesterday, the Big Give extended the Pledge phase to 11pm Sunday 7th September and so, to aid those who wish to participate, we have increased our Pledge
- [Scottish Parliamentary Answers on ME/CFS](https://www.meresearch.org.uk/scottish-parliamentary-answers-on-me-cfs/) - On 30th July 2025 Jackie Baillie MSP (at the behest of ME Research UK) tabled 3 questions of interest to the ME community which have now been answered by Jenni Minto MSP as Minister for Public Health and Women’s Health. The questions being - To ask the Scottish Government what practical and financial steps it
- [SMPDL3B – potential biomarker and therapeutic target in ME?](https://www.meresearch.org.uk/smpdl3b-potential-biomarker-and-therapeutic-target-in-me/) - Background SMPDL3B (short for sphingomyelin phosphodiesterase acid-like 3B) is a protein that sits on the membrane of cells and influences lipids (fatty/waxy substances) within the membrane. Specifically, it tweaks levels of certain lipids called sphingolipids, which are both structural components of the cell membrane and signalling molecules. By regulating these lipids, SMPDL3B can affect how
- [Steroid hormones in ME/CFS](https://www.meresearch.org.uk/steroid-hormones-in-me-cfs/) - There are several types of signaling molecules (hormones) in the body, including fat-soluble molecules, called steroid hormones. Steroid hormones, such as those produced in the adrenal gland (cortisol and adrenaline), and sex hormones (like oestrogen and progesterone), play a key role in many processes in the body, including those which have been found to be dysregulated
- [Big Give 2025 - Pledge Deadline Extended](https://www.meresearch.org.uk/big-give-2025-pledge-deadline-extended/) - The Big Give has announced a 1 week extension for the pledge phase of their fundraising initiative. Pledges can now be made until 11pm Sunday 7th September. ME Research UK is so close to achieving our Pledge goal of £19,000 that the extra week may just get us over the line. £100 is the minimum
- [Assistant Professor Rob Wüst on skeletal muscle alteration in  ME/CFS and Long COVID.](https://www.meresearch.org.uk/assistant-professor-rob-wust-on-skeletal-muscle-alteration-in-me-cfs-and-long-covid/) - Assistant Professor Rob Wüst, who is working on research funded by ME Research UK, spoke at the International ME/CFS Conference 2025 on skeletal muscle alteration in Long COVID and ME/CFS. In his talk, Wüst discussed mechanisms which may explain post-exertional malaise (PEM) including: Changes in energy production and utilisation in the body (metabolism). Impaired recovery
- [Impaired energy metabolism and immune overactivation identified following exercise in men with ME/CFS.](https://www.meresearch.org.uk/impaired-energy-metabolism-and-immune-overactivation-identified-following-exercise-in-men-with-me-cfs/) - A study published in the Journal 'Clinical and Translational Medicine' has identified significant differences in the responses of extracellular vesicles – particles in the body which play a key role in communication between cells – following exercise between males with ME/CFS and male sedentary controls. This study follows a previously published paper by the research team
- [Oxidative stress in ME/CFS and long COVID](https://www.meresearch.org.uk/oxidative-stress-in-me-cfs-and-long-covid/) - A recent study highlighted that the clinical presentation of long COVID is heterogenous (highly varied), spanning multiple organ systems, and in some cases strongly resembles ME/CFS. This overlap is not surprising, as many people with long COVID meet diagnostic criteria for ME/CFS, and the two diagnoses can co-exist, since both are currently symptom-based. “With no
- [Biological Basis of ME/CFS and Recommendations for Supporting Patients](https://www.meresearch.org.uk/biological-basis-of-me-cfs-and-recommendations-for-supporting-patients/) - According to a paper by medical student Priya Agarwal, published in the journal ‘healthcare’, there is disagreement among healthcare providers as to how most appropriately treat people with ME/CFS. Agarwal explains that despite recent advancements in understanding relating to the biological basis of ME/CFS, the disease remains largely misunderstood. Unfortunately, as those with ME/CFS will
- [Why replication of research findings is important](https://www.meresearch.org.uk/why-replication-of-research-findings-is-important/) - Often in ME/CFS research, new studies draw the same – or similar – conclusions to those that have been published previously. There are several reasons why this replication is important, including: Accumulation of knowledge: The results from one study alone are usually not enough to draw firm conclusions about an association. Rather, researchers must gather
- [Getting their due – the muscles in ME/CFS](https://www.meresearch.org.uk/getting-their-due-the-muscles-in-me_cfs/) - Cort Johnson from the Health Rising blog explores some of the muscle abnormalities identified in recent ME/CFS research, and how these may contribute to the symptoms of the disease. This includes a discussion of Rob Wüst's recent long-COVID study, which Dr Wüst is following up with a study in ME/CFS, funded by ME Research UK and to
- [Evidence of immune dysregulation in ME/CFS](https://www.meresearch.org.uk/evidence-of-immune-dysregulation-in-me-cfs/) - “Our findings support the hypothesis that immune dysregulation underlies ME/CFS pathology” concludes a paper written by a team of researchers including Prof. Maureen Hanson. The study recruited 93 people who met both the Institute of Medicine and Canadian Consensus Criteria for ME/CFS, and 75 sedentary controls. The methods used by the research team were complex,
- [New fellowship award](https://www.meresearch.org.uk/new-fellowship-award/) - ME Research UK and the Daphne Jackson Trust are delighted to announce that they have awarded a Fellowship to Dr Alkisti Manousaki at the University of Leicester, for a project investigating the genetic and cellular clues that may explain why ME/CFS affects more women than men. This Daphne Jackson Trust Fellowship is jointly funded by
- [Biological abnormalities create ‘ongoing physiological vicious cycles’ in ME/CFS and long COVID.](https://www.meresearch.org.uk/biological-abnormalities-create-ongoing-physiological-vicious-cycles-in-me-cfs-and-long-covid/) - A review by Prof. Anthony Komaroff and Prof. Robert Dantzer, published in the journal ‘Cell Reports Medicine’, has highlighted that ME/CFS and long COVID may share common biological abnormalities such as: Problems with energy production and utilisation in cells (cell metabolism). Issues with the immune system (immune dysregulation). Inflammation in the brain (neuroinflammation) Disruption
- [Altered neurometabolite levels in the brains of people with ME/CFS](https://www.meresearch.org.uk/altered-neurometabolite-levels-in-the-brains-of-people-with-me-cfs/) - Kiana Kothe is a PhD student working with Prof. Zack Shan at the University of the Sunshine Coast on an ME Research UK-funded project using magnetic resonance imaging to investigate brain neuroinflammation in ME/CFS. Kiana recently presented some of her initial results at the annual conference of the Organisation for Human Brain Mapping in June
- [Complex 'human responses' experienced by people with ME/CFS as they navigate life with the disease.](https://www.meresearch.org.uk/complex-human-responses-experienced-by-people-with-me-cfs-as-they-navigate-life-with-the-disease/) - A review study – summarising the evidence from 30 research articles – has highlighted the complex ‘human responses’ – such as uncertainty, fear, grief, loneliness, and frustration – that many people experience as they navigate life with ME/CFS. Results also suggested that there are four main phases people with ME/CFS go through as they move
- [Delivery Plan for ME/CFS Published - Research Details](https://www.meresearch.org.uk/delivery-plan-for-me-cfs-published-research-details/) - Over 3 years after the process began with the then Secretary of State for Health and Social Care's announcement on the 12th of May 2022 of a review, and in light of views expressed during a consultation period on the My full reality: the interim delivery plan on ME/CFS, the UK government published its finalised
- [Severe ME Day 2025](https://www.meresearch.org.uk/severe-me-day-2025/) - Background Severe ME Day – 8th August – is a day dedicated to raising awareness about severe myalgic encephalomyelitis (ME). Estimates suggest that around 25% of individuals with ME suffer from the severe form of the disease. The impact of severe ME on an individual’s life is profound, leaving many confined to their homes, bedbound, or
- [Mitochondria and ME/CFS](https://www.meresearch.org.uk/mitochondria-and-me-cfs/) - Mitochondria are often called powerhouses. These structures, found in every cell in the body, convert energy from our food into a form our cells can use. It therefore is understandable to question whether abnormalities in the mitochondria might play a role in ME/CFS, a disease that is characterised partly by an apparent lack of energy. Considerable
- [Will Scottish Government fund NICE compliant services, the ME/CFS Delivery Plan and Research?](https://www.meresearch.org.uk/will-scottish-government-fund-nice-compliant-services-the-me-cfs-delivery-plan-and-research/) - When Jenni Minto MSP as Minister for Public Health and Women’s Health responded to Jackie Baillie MSP's written question (S6W-37793) on how the Scottish Government's £4.5 million of funding for specialist support for long-term conditions announced in the Programme for Government 2025-26 would be allocated, broken down by (a) conditions it will cover, (b) services
- [Leading questions in ME/CFS research](https://www.meresearch.org.uk/leading-questions-in-me-cfs-research/) - Research by Professor Jason and colleagues has found that the way questions are asked in ME/CFS research can influence the responses given by participants. The team concluded that these altered responses to study questions may unintentionally reinforce erroneous assumptions that the ME/CFS is psychological in nature (psychosomatic). The study, which included 2,248 people with
- [Fundraising Focus - August 2025](https://www.meresearch.org.uk/fundraising-focus-august-2025/) - All of us at ME Research UK are so very grateful for the support the charity receives from its fundraisers. It is only because of your support that we can continue to inform, influence, and invest in ME/CFS research globally. Without you, our current projects simply would not be funded. So - join us as
- [What is prevalence and why is it important?](https://www.meresearch.org.uk/what-is-prevalence-and-why-is-it-important/) - What is prevalence? Prevalence is the percentage (or proportion) of the population that has a certain characteristic or is affected by a particular disease, such as ME/CFS. Prevalence is calculated for a given place for either a specific time (point prevalence), or for a specific time-period (period prevalence), by considering the following: The number of
- [Prevalence of ME/CFS: A growing problem](https://www.meresearch.org.uk/prevalence-of-me-cfs-a-growing-problem/) - Determining the prevalence of any disease may be thought of as a simple matter, underpinned by certainties and sound science. However, in ME/CFS prevalence figures are not so straightforward – confounded as they are by differing disease definitions, data collection methods, and even when and where a study was carried out. In a series
- [Additional information on the studies relating to the prevalence of ME/CFS](https://www.meresearch.org.uk/additional-information-on-the-studies-relating-to-the-prevalence-of-me-cfs/) - The following will summarise key findings and limitations of the studies discussed in the article "Existing estimates of ME/CFS prevalence and their limitations". Evidence of the prevalence of ME/CFS in the UK – Samms and Ponting (2025) The most recent study relating to the prevalence of ME/CFS in the UK is a paper by Samms
- [Prevalence of ME/CFS in the UK - Summary](https://www.meresearch.org.uk/prevalence-of-me-cfs-in-the-uk-summary/) - Prevalence is the number of people in a population who have a certain disease at a given time or over a specified period of time. Considering the factors that influence the prevalence of a disease: Incidence – the number of new cases of a disease, Recovery rate – the number of people recovering from the
- [What are the limitations/difficulties in arriving at a prevalence rate for ME/CFS in the UK?](https://www.meresearch.org.uk/what-are-the-limitations-difficulties-in-arriving-at-a-prevalence-rate-for-me-cfs-in-the-uk/) - Several studies do provide estimates for the prevalence of ME/CFS in the UK – and elsewhere in the world – with published figures for the UK ranging from 0.1% to 2.62%. The most recent peer-reviewed estimate for the UK, published in April 2025, uses information recorded in hospital records – hospital episode statistics (HES) data – for
- [Existing estimates of ME/CFS prevalence and their limitations](https://www.meresearch.org.uk/existing-estimates-of-me-cfs-prevalence-and-their-limitations/) - Although the exact prevalence of ME/CFS is unknown, several estimates exist both for the UK and elsewhere in the world. While not an exhaustive review of all studies containing information on ME/CFS prevalence (which would need to be a specific type of study that uses repeatable methods to search for, select, and combine all available
- [Scottish Government funding for ME/CFS - Update](https://www.meresearch.org.uk/scottish-government-funding-for-me-cfs-update/) - When the draft Scottish Budget for 2025/26 was delivered by Shona Robison MSP, Scotland’s Finance Secretary to Holyrood on 4th December 2024 it contained a commitment for an ‘additional £4.5 million to deliver new specialist support across the country for Long Covid, ME, Chronic Fatigue, and other similar conditions.’ With such a sweeping statement, it
- [A combination of several biological markers differentiate 'post COVID-19 condition' from 'ME/CFS', and from fibromyalgia.](https://www.meresearch.org.uk/a-combination-of-several-biological-markers-differentiate-post-covid-19-condition-from-me-cfs-and-fibromyalgia/) - A study by a research team led by Professor Elisa Oltra, who has previously worked on ME Research UK-funded projects relating to ME/CFS and human endogenous retrovirus (HERVs), has identified that certain markers in blood – including those relating to HERVs – were able to differentiate ‘post-COVID-19 condition’ – also known as long COVID –
- [Big Give 2025 - Target raised once more!](https://www.meresearch.org.uk/big-give-2025-target-raised-once-more/) - With a month to go before the Big Give pledge phase ends at 5pm Friday 29th August 2025, ME Research UK is excited to announce that thanks to the generosity of supporters we have increased our Pledge goal to £19,000. £100 is the minimum pledge permitted by The Big Give. We appreciate that this is
- [Delivery Plan for ME/CFS Published](https://www.meresearch.org.uk/delivery-plan-for-me-cfs-published/) - UK government on 22nd July 2025, a few days before parliament rises for the summer recess has published its Delivery Plan for ME/CFS. The 3 plus year process covering research, living with ME/CFS and attitudes and education. In the Press Release unfortunately entitled 'Boost in support for patients with chronic fatigue syndrome or ME' the
- [New project investigating the role of microRNAs in ME/CFS](https://www.meresearch.org.uk/new-project-investigating-the-role-of-micrornas-in-me-cfs/) - ME Research UK is delighted to announce that we have awarded funding to Dr Sarah Annesley at La Trobe University in Australia for a new study looking at microRNA profiles and their impact on platelet function and energy production in women with ME/CFS. Dr Annesley explains, “Our early research has found that certain microRNAs are
- [A Report of the CFS/ME Working Group: Report to the Chief Medical Officer of an Independent Working Group 2002 - a reminder](https://www.meresearch.org.uk/a-report-of-the-cfs-me-working-group-report-to-the-chief-medical-officer-of-an-independent-working-group-2002-a-reminder/) - On the 16 July 1998, at a scientific briefing to the press at the Royal College of Physicians, the then Chief Medical Officer Sir Kenneth Calman announced the establishment of a Working Group on what was then termed CFS/ME I recognise chronic fatigue syndrome (sic) is a real entity. It is distressing, debilitating, and affects
- [Gibson Report - Research Comments](https://www.meresearch.org.uk/gibson-report-research-comments/) - With the death of Dr Ian Gibson it would seem an appropriate moment to recall the treatment and research recommendations contained within the Group on Scientific Research into ME Report (Gibson Parliamentary Inquiry). The terms of reference for the Group was "to assess the progress of scientific research on ME, since the publication of the
- [Death of former CMO Prof Sir Kenneth Calman](https://www.meresearch.org.uk/death-of-former-cmo-prof-sir-kenneth-calman/) - It is with sadness that ME Research UK learns of the death of prominent academic and Chief Medical Officer of Scotland and thereafter England on 21st July 2025. On the 16 July 1998, at a scientific briefing to the press at the Royal College of Physicians, the then Chief Medical Officer Sir Kenneth Calman announced
- [In conversation with Assistant Professor Rob Wüst.](https://www.meresearch.org.uk/in-conversation-with-assistant-professor-rob-wust/) - Assistant Professor Rob Wüst, who is currently working on an ME Research UK-funded project investigating muscle microclots and microvascular pathology in ME/CFS, has taken part in a series of videos in which he answers questions from ‘patients’ as part of a joint project by NMCB, who are funded by the Netherland's ZonMw ME/CFS research programme,
- [Lived experience of ME](https://www.meresearch.org.uk/lived-experience-of-me/) - Following the publication of the DHSC Delivery Plan (read our commentary here), The Independent has shared a powerful account from Tracy Meggitt – a former biomedical research associate who was diagnosed with ME/CFS in 2018. Tracy recalls: “I would go in on a Monday, do a few hours, and be utterly shattered by the time
- [PoTS and Blood Pressure](https://www.meresearch.org.uk/pots-and-blood-pressure/) - Considering that many of the conversations about postural orthostatic tachycardia syndrome (PoTS) focus on blood pooling in the lower limbs and interventions like fluids and compression garments, it's understandable that people often assume low blood pressure is a key feature of PoTS. However, this isn’t necessarily true. In fact, people with PoTS typically have a normal
- [Sarah J Lewis: Prevention of Future Deaths Report](https://www.meresearch.org.uk/sarah-j-lewis-prevention-of-future-deaths-report/) - Please be aware that this posting contains details which may be upsetting. When the Assistant Coroner of The County of Devon, Plymouth and Torbay issued a preventing future deaths report on 7 Oct 2024 over the death of Maeve Boothby O’Neill it was descibed in The Times as a “watershed moment". Such reports are issued
- [Ministerial letter on publication of Delivery Plan](https://www.meresearch.org.uk/ministerial-letter-on-publication-of-delivery-plan/) - Ashley Dalton MP, Parliamentary Under-Secretary of State for Public Health and Prevention has issued a letter to coincide with the 22nd July 2025 publication of the ME/CFS Delivery Plan. Dear all, Publication of the myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) final delivery plan I am pleased to inform you that today we are publishing
- [Medical Gaslighting](https://www.meresearch.org.uk/medical-gaslighting/) - An article published in Medscape highlights the results of a review – previously discussed by ME Research UK – which identified that ‘Symptom invalidation’ by health professionals may lead to delays in diagnosis. Regrettably, many people with ME/CFS experience symptom invalidation – also known as ‘medical gaslighting’ – which is the dismissal or minimisation of
- [What is the Government's intentions towards the ME/CFS Delivery Plan?](https://www.meresearch.org.uk/what-are-governments-intentions-towards-me-cfs-delivery-plan/) - Through answers to various parliamentary questions, the government has previously indicated that research spend for ME/CFS will not be ring-fenced and that the focus of activity will be to support researchers to increase the number and quality of applications rather than any specific routes for funding nor targetting of resources. So, any hints as to
- [Post Acute Infectious syndromes](https://www.meresearch.org.uk/post-acute-infectious-syndromes/) - NIHR recently announced a funding opportunity for research into the treatment and management of post-acute infection syndromes (PAIS), including long COVID and ME/CFS – but what are PAIS? In a commentary, published in the journal ‘Proceedings of the National Academy of Sciences’ (PNAS), Prof Anthony Komaroff explains that PAIS are illnesses – with very similar
- [Brain differences: post-infectious vs gradual onset ME/CFS](https://www.meresearch.org.uk/brain-differences-post-infectious-vs-gradual-onset-me-cfs/) - A recent brain imaging study investigated whether there are distinct brain differences between individuals with post-infectious ME/CFS (PI-ME/CFS), where symptoms begin shortly after an infection, and those with gradual-onset ME/CFS (GO-ME/CFS), which develops slowly over time without a clear infectious trigger. The research team, which included Dr Zack Shan (currently funded by ME Research UK
- [Researcher Circle](https://www.meresearch.org.uk/researcher-circle/) - Last week, the first meeting of ME Research UK’s ‘Researcher Circle’ took place virtually. The Circle is aimed (initially) at PhD-level students working on projects funded by ME Research UK charity, and will: Create an online space for students to network and learn about each other’s work. Provide an opportunity for skill development through talks
- [JustGiving Adds Mobile Fundraising Features](https://www.meresearch.org.uk/justgiving-adds-mobile-undraising-features/) - Did you know that 1 in every four donations on JustGiving come through sharing activity? That is why JustGiving has made it easier to enable donations to events ‘on the go’ and by sharing. Add to Apple Mobile When fundraisers share pages in person, they can convey their passion in ways that just can’t be
- [Big Give 2025 - Pledge Target Increased](https://www.meresearch.org.uk/big-give-2025-pledge-target-increased/) - With over a month to go before the Big Give pledge phase ends, ME Research UK is excited to announce that thanks to the generosity of supporters we have reached our goal of securing £15,000 in Pledges! This means that we are assured entry to this year's event and that during December's Big Give event,
- [Big Give Christmas Challenge 2025 - Become a Pledger Today](https://www.meresearch.org.uk/big-give-christmas-challenge-2025-become-a-pledger-today/) - Last year, ME Research UK participated in The Big Give Christmas Challenge and raised over £60,000 of much-needed funds to invest in ME research globally. This year we would like to increase the amount of research we can fund by raising even more through The Big Give. The first step is to ask supporters to
- [Dr Melvin Ramsay’s foresight about ME – Quotes from 1986](https://www.meresearch.org.uk/dr-melvin-ramsays-foresight-about-me-quotes-from-1986/) - In 1986, Dr Melvin Ramsay, a British physician renowned for his research and advocacy on myalgic encephalomyelitis (ME), published Postviral Fatigue Syndrome: The Saga of Royal Free Disease (later titled Myalgic Encephalomyelitis and Postviral Fatigue States: The Saga of Royal Free Disease). The book documents cases of ME following various confirmed or suspected infectious outbreaks,
- [US Report - Aligning Investments in Therapeutic Development with Therapeutic Need: Closing the Gap](https://www.meresearch.org.uk/us-report-aligning-investments-in-therapeutic-development-with-therapeutic-need-closing-the-gap/) - The United State's National Academies has commissioned, and now published, a Consensus Report addressed to both public and private funders of biomedical research. Ideally, the Report states, research priorities and investments in therapeutic development and innovation should align with the diseases and conditions with the highest unmet need and burden of disease. However, for a
- [NIHR announce a funding opportunity for research into the treatment and management of post-acute infection syndromes, including long COVID and ME/CFS](https://www.meresearch.org.uk/nihr-announce-a-funding-opportunity-for-research-into-the-treatment-and-management-of-post-acute-infection-syndromes-including-long-covid-and-me-cfs/) - NIHR announce funding through the “Application Development Award” scheme for a study which will “accelerate the necessary learning and preparation to explore the feasibility of a phase 2 platform study” into the treatment and management of post-acute infection syndromes, including long COVID and ME/CFS. The study should aim to establish the optimum approach for
- [ME Research Day – 13th of July 2025](https://www.meresearch.org.uk/me-research-day-13th-of-july-2025/) - This year, ME Research UK marks 25 years since its foundation. To recognise this, the charity is launching ME Research Day. The day – the 13th of July 2025 – was chosen as it marks the 70th anniversary of the outbreak of a ‘mystery illness’ at the Royal Free Hospital in London in 1955. This
- [70th Anniversary of Royal Free outbreak - What is the significance of the outbreak today? ](https://www.meresearch.org.uk/70th-anniversary-of-royal-free-outbreak-what-is-the-significance-of-the-outbreak-today/) - The outbreak at the Royal Free acted as the spark which ignited research interest into the mystery illness. Following the outbreak in 1955, the evolution of studies and recognition of the disease grew and nurtured lifelong interest for some – such as the work of Dr Melvin Ramsay (a member of the Royal Free's Infectious Diseases department)
- [70th Anniversary of Royal Free outbreak - Why was it so hard to identify the cause, and what were the consequences of this? ](https://www.meresearch.org.uk/70th-anniversary-of-royal-free-outbreak-why-was-it-so-hard-to-identify-the-cause-and-what-were-the-consequences-of-this/) - Although there was much overlap in the symptoms recorded in the different outbreaks, especially fatigue, pain, and ‘flare ups’ – a tendency to relapse following exertion, scientists at the time were not able to identify the cause of the illness. What were the symptoms at the Royal Free and earlier outbreaks? Across all outbreaks,
- [70th Anniversary of Royal Free outbreak - 13th July 1955 ](https://www.meresearch.org.uk/70th-anniversary-of-royal-free-outbreak-13th-july-1955/) - The 13th of July 2025 marked the 70th anniversary of the outbreak of an illness which was, in a 1956 piece in The Lancet, labelled 'benign myalgic encephalomyelitis'. At the start of the outbreak – on the 13th of July 1955 – a doctor and nurse working at the hospital were admitted to wards with
- [Senedd Cymru/Welsh Parliament Motion on ME](https://www.meresearch.org.uk/senedd-cymru-welsh-parliament-motion-on-me/) - Adam Price MS has tabled a Motion before the Cardiff-based parliament which, if accepted, could lead to a debate in the parliament chamber itself. The proposal highlights to needs of those most severely affected by the disease and the need for appropriate care provision on a national level. To propose that the Senedd:1. Notes that
- [What does Health-Related Quality of Life (HRQoL) measure?](https://www.meresearch.org.uk/what-does-health-related-quality-of-life-hrqol-measure/) - We previously reported on research showing that individuals with ME/CFS and long COVID experience a marked decline in health-related quality of life (HRQoL). For those living with these conditions, this likely comes as no surprise. We further explore the impact of ME/CFS in the following articles: Impact of ME/CFS on Quality of Life Quality of
- [Delivery Plan Delay - July Update](https://www.meresearch.org.uk/delivery-plan-delay-july-update/) - The goal of June 2025 for publication of the Delivery Plan has now passed. Lest it be forgotten it was originally promised to be published by the end of 2022. The Plan failed to materialise as it moved through the morass of working groups and sub-working groups and consultation reviews. A succession of other publication
- [June 2025 for ME/CFS Delivery plan publication?](https://www.meresearch.org.uk/june-2025-for-me-cfs-delivery-plan-publication/) - When Tom Morrison MP asked "The Secretary of State for Health and Social Care, if he will make an assessment of the potential impact of myalgic encephalomyelitis on the economy" the answer from Ashley Dalton MP Parliamentary Under-Secretary (Department of Health and Social Care) was wider than expected. In responding to the question (UIN 40021)
- [Research Appreciation Day 2025 – Research  Highlights](https://www.meresearch.org.uk/research-appreciation-day-2025-research-highlights/) - Since the last Research Appreciation Day on the 5th of July 2024, researchers involved in ME Research UK-funded studies have made great strides in their work, including: Dr. Sarah Annesley, who is currently working on research funded by ME Research UK, wrote an article for 'The Conversation' titled “It’s not just chronic fatigue: ME/CFS is
- [A Message from ME Research UK's Founding Patron Roger Jefcoate CBE DL on our 25th anniversary](https://www.meresearch.org.uk/a-message-from-me-research-uks-founding-patron-roger-jefcoate-cbe-dl-on-our-25th-anniversary/) - A message to ME Research UK form Founding Patron Roger Jefcoate CBE DL to mark the charity's 25th anniversary. Information about our Founding Patron For over sixty years Roger Jefcoate CBE DL has worked to enhance the use of technology for people living with a disability, starting with the ten years he spent at Stoke
- [Messages from Hon President Bob McRae and current Secretary Jan McKendrick on our 25th anniversary](https://www.meresearch.org.uk/messages-from-hon-president-bob-mcrae-and-current-secretary-jan-mckendrick-on-our-25th-anniversary/) - As ME Research UK marks 25 years since its foundation, Bob McRae Hon. President, Founding Trustee and former Secretary of ME Research UK gives an insight into why he founded the charity and Jan McKendrick, current Secretary, looks to our current work.
- [Messages from Hon President Dr Vance Spence, and Chair Jonathan Davies on ME Research UK's 25th anniversary](https://www.meresearch.org.uk/messages-from-hon-president-dr-vance-spence-and-chair-jonathan-davies-on-me-research-uks-25th-anniversary/) - As ME Research UK marks 25 years since its foundation, Dr Vance Spence Hon. President, Founding Trustee and former Chairman of ME Research UK gives an insight into why he founded the charity and Jonathan Davies, current Chair, looks to our current work.
- [Recommendations for health professionals from people with lived experience of ME/CFS may improve care.](https://www.meresearch.org.uk/recommendations-for-health-professionals-from-people-with-lived-experience-of-me-cfs-may-improve-care/) - A team of researchers in America have found that including ‘lived experience experts’ – people with lived experience of ME/CFS, long COVID, or other post-acute infection syndromes (PAIS) – in a virtual education program for health professionals generally improved the care patients received. The aim of including lived-experience experts in the program, entitled ‘The Long
- [Dr Krista Clarke explores electrophysiological properties of blood cells in ME/CFS](https://www.meresearch.org.uk/doctoral-thesis-explores-electrophysiological-properties-of-blood-cells-in-me-cfs/) - Congratulations to Dr Krista Clarke on the publication of her doctoral thesis: "Characterising the Electrophysiological Properties of Cells in Health and Disease" - https://tinyurl.com/5n86js82 Note: Electrophysiology is the study of the electrical properties of biological cells and tissues. Krista’s thesis presents three studies which used “high-throughput, non-invasive, and low-cost tools” to “examine the electrophysiological properties
- [ME Research UK updates use of UK ME/CFS Prevalence Figure](https://www.meresearch.org.uk/me-research-uk-updates-use-of-uk-me-cfs-prevalence-figure/) - Over the past few months ME Research UK has published a number of articles tackling the importance of prevalence rates of ME/CFS in the UK, and analysing the research behind a number of oft-quoted figures. Where there have been weaknesses, these have been been pointed out as well as showing why rates from one country
- [Immune markers help identify ME/CFS subgroups](https://www.meresearch.org.uk/immune-markers-help-identify-me-cfs-subgroups/) - The Scientist reports “Immune Markers Help Identify Subgroups of ME/CFS Patients” https://tinyurl.com/44428cfz The news article highlights a recent study, that we previously discussed https://bit.ly/45ntdNV, exploring immune system differences in people with ME/CFS compared to healthy participants. Researchers "first assessed circulating immune proteins, hormones, and matrix metalloproteinases (MMPs)—which have been associated in neuroinflammation", in blood samples
- [Research Appreciation Day 2025 ](https://www.meresearch.org.uk/research-appreciation-day-2025/) - Today (5th July) marks Research Appreciation Day, which celebrates the hard work of health researchers and scientists around the world. This year, the organisers of Research Appreciation Day 2025 highlight that ‘All breakthroughs in healthcare are made thanks to the work of researchers.’ Therefore, we highlight the work ME Research UK is currently funding, and celebrate
- [ME/CFS June 2025 Delivery Plan Publication Deadline Missed](https://www.meresearch.org.uk/me-cfs-june-2025-delivery-plan-publication-deadline-missed/) - At the beginning of June 2025 all indications were that Ministers fully intended publishing the oft-delayed Delivery Plan on ME/CFS "by the end of June 2025" and that the "... plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease." Yet, ME Research UK noted
- [Fundraising Focus - July 2025](https://www.meresearch.org.uk/fundraising-focus-july-2025/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Why a biomarker for ME/CFS is important and why we do not have one yet](https://www.meresearch.org.uk/why-a-biomarker/) - Despite numerous studies demonstrating biological changes related to ME/CFS, a diagnostic biomarker has not yet been identified. Biomarkers are measurable clues within the body that tell us about the presence of a disease, and can give information about disease progression. Currently, the diagnosis of ME/CFS is largely based on self-report measures and the exclusion of
- [ME Research UK – June e-newsletter](https://www.meresearch.org.uk/me-research-uk-june-e-newsletter/) - Promising Findings from Our Researchers “HERV fingerprints” Prof. Elisa Oltra, Dr Karen Giménez-Orenga and colleagues at the University of Valencia have recently published more findings from their ME Research UK-funded study investigating human endogenous retrovirus (HERV) in ME/CFS. The researchers analysed immune cells from women with ME/CFS, fibromyalgia, both conditions, and healthy controls. Using special
- [EU Horizon Funding for ME/CFS research](https://www.meresearch.org.uk/eu-horizon-funding-for-me-cfs-research/) - The new work programme of Horizon Europe 2025 – 2026 has been published and is a key step towards achieving the EU's research and innovation priorities outlined in the Horizon Europe strategic plan for 2025-2027. ME/CFS is specifically highlighted in one funding area with the aspects to be considered by funders bearing a great deal
- [Heat, ME/CFS and orthostatic intolerance](https://www.meresearch.org.uk/heat-me-cfs-and-orthostatic-intolerance/) - People in the UK have been experiencing unusually hot weather this June, with a high of 33.2°C recorded on Saturday, 21 June 2025, in Charlwood near Gatwick — the hottest UK temperature of the year so far, according to a BBC news article. Whilst hot weather is often associated with pleasant activities like day trips,
- [Australian ME/CFS Guideline Development Announced](https://www.meresearch.org.uk/australian-me-cfs-guideline-development-announced/) - The process for the development of the first Australian ME/CFS guidelines has begun with the announcement of the National Health and Medical Research Council's (NHMRC) timeline, committee membership, and project aims. The NHMRC has never before issued or approved guidelines for ME/CFS and there are no current Australian clinical practice guidelines for the disease, however,
- [Dr Sarah Annesley highlights the biological nature of ME/CFS](https://www.meresearch.org.uk/dr-sarah-annesley-highlights-the-biological-nature-of-me-cfs/) - Dr Sarah Annesley – who is currently working on research funded by ME Research UK – has written an article entitled “It’s not just chronic fatigue’: ME/CFS is much more than being tired” for ‘The Conversation’ which is ‘an independent source of news analysis and informed comment written by academic experts, working with professional journalists who help
- [Want to run in the 2026 tcs London Marathon?](https://www.meresearch.org.uk/want-to-run-in-the-2026-tcs-london-marathon/) - The TCS London Marathon is one of the biggest, best and most well-known running events in the world – attracting both professional and amateur runners, and raising awareness and money for a variety of good causes. The ballot for the 2026 Marathon closed on 2nd May, and if you weren’t fortunate enough to be selected
- [Newly identified genetic variants associated with ME/CFS](https://www.meresearch.org.uk/newly-identified-genetic-variants-associated-with-me-cfs/) - Prof. Brett Lidbury at the Australian National University, and colleagues at various other institutions in Australia and Colombia, have been engaged in the search for genetic markers of ME/CFS. The team has recently published the findings of an ME Research UK-funded study in which they analysed the whole-exome sequences (i.e. all the regions of genes
- [Sleep reversal and ME/CFS](https://www.meresearch.org.uk/sleep-reversal-and-me-cfs/) - Sleep is vital to everyday functioning, and consistently poor sleep quality can significantly affect even healthy individuals. For people with ME/CFS — who already contend with a wide array of debilitating symptoms — sleep disturbances can be particularly challenging. In fact, sleep difficulties are a common and frustrating feature of ME/CFS, with individuals reporting a
- ["Feeling heard, valued, and believed" key to positive interactions with health professionals](https://www.meresearch.org.uk/feeling-heard-valued-and-believed-key-to-positive-interactions-with-health-professionals/) - A study considering the views of 13 people with “CFS/ME” and (or) fibromyalgia in relation to remote medical appointments – such as those conducted online or telephone – has highlighted the importance of “feeling heard, valued, and believed” by health professionals – whether consultations are conducted remotely or in person. The study also identified that
- [New research identifies pathway for chronic pain.](https://www.meresearch.org.uk/new-research-identifies-pathway-for-chronic-pain/) - New research at the University of Aberdeen, Academia Sinica in Taiwan and a group of international experts, has identified that long term persistent pain (chronic pain) – which is commonly experienced by people with ME/CFS and those with Fibromyalgia – is processed differently in the nervous system from pain that comes from an injury or
- [London Marathon 2026 charity place](https://www.meresearch.org.uk/london-marathon-2026-charity-place/) - The TCS London Marathon is acknowledged as one of the biggest, best and most well-known running events in the world – attracting both professional and amateur runners, and raising awareness and funds for a variety of good causes. The ballot for the 2026 Marathon closed on 2nd May, with a reported 1,133,813 people entering. This
- [UK Parliamentary questions on ME/CFS](https://www.meresearch.org.uk/uk-parliamentary-questions-on-me-cfs/) - A number of linked questions have been tabled by Alison Hume MP concerning ME/CFS in terms of the upcoming promised publication of the government's Delivery Plan on ME/CFS, its content, and also on NICE implementation. Each written question being answered by Ashley Dalton MP Parliamentary Under-Secretary (Department of Health and Social Care) on behalf of
- [Impaired motoneuron behaviour in ME/CFS](https://www.meresearch.org.uk/impaired-motoneuron-behaviour-in-me-cfs/) - Prof. Janet Taylor and Dr Chris Latella at Edith Cowan University have been investigating the source of muscle weakness in people with ME/CFS, as part of an ME Research-funded study. They presented some of their initial findings at the Australasian Neuroscience Society annual meeting last December. The researchers measured the activity of nerves supplying the
- [Dr David Tuller interviews Dr Rob Wüst about his new study.](https://www.meresearch.org.uk/dr-david-tuller-interviews-dr-rob-wust-about-his-new-study/) - Dr Rob Wüst – who is currently working on a project funded by ME Research UK – has been interviewed by Dr David Tuller about his team's research which compares the effects of exercise on people with ME/CFS and those with Long Covid, with the effects on healthy controls who were deconditioned after 60 days of
- [The impact of psychosomatic and psychiatric misdiagnosis.](https://www.meresearch.org.uk/the-impact-of-psychosomatic-and-psychiatric-misdiagnosis/) - Regrettably, many people with ME/CFS experience a psychosomatic and psychiatric misdiagnosis – where symptoms of a physical disease are erroneously attributed to mental health and lifestyle. Interestingly, a paper published in the journal “Rheumatology” has investigated the impact of psychosomatic and psychiatric misdiagnoses a the well-being of people with systemic autoimmune rheumatic diseases (SARD) –
- [Debilitating nature of ME/CFS and the research being conducted](https://www.meresearch.org.uk/debilitating-nature-of-me-cfs-and-the-research-being-conducted/) - For ME Awareness Week 2025, we shared infographics raising awareness about the debilitating nature of ME/CFS, but also about the research being conducted to tackle the symptoms associated with the disease. Post-exertional malaise Post-exertional malaise (PEM), the hallmark feature of ME/CFS, is the worsening of symptoms (and potential appearance of new symptoms) following minimal physical or
- [Could HERV expression be useful in the diagnosis of ME/CFS?](https://www.meresearch.org.uk/could-herv-expression-be-useful-in-the-diagnosis-of-me-cfs/) - Prof. Elisa Oltra, Dr Karen Giménez-Orenga and colleagues at the University of Valencia have recently published more findings from their ME Research UK-funded study investigating human endogenous retrovirus (HERV) in ME/CFS. Using high-density microarray technology, they assessed HERV expression profiles in immune cell samples from four groups of women: those with ME/CFS, fibromyalgia or both
- [Immune cells and post viral fatigue syndrome – a causal connection?](https://www.meresearch.org.uk/immune-cells-and-post-viral-fatigue-syndrome-a-causal-connection/) - Increasing research has linked immune cells with post viral fatigue syndrome (PVFS) – an umbrella term which includes ME/CFS, fibromyalgia, and long COVID. However, there is uncertainty around whether the relationship between the two is ‘causal’. In research, a causal relationship occurs when one event – the cause – brings about another event – the
- [Fundraising Focus - June 2025](https://www.meresearch.org.uk/fundraising-focus-june-2025/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [New findings highlight the need for tissue biopsy studies when considering pathogen reactivation in ME/CFS.](https://www.meresearch.org.uk/new-findings-highlight-the-need-for-tissue-biopsy-studies-when-considering-pathogen-reactivation-in-me-cfs/) - ME/CFS is a complex disease which differs between individuals, between groups of people with the disease, and even within the same individual over time. Understanding ME/CFS disease mechanisms is key to explaining this disease diversity (heterogeneity), and for developing targeted treatments. Therefore, a collaborative study by a team of researchers with different yet complementary skillsets
- [‘Symptom invalidation’ by health professionals may lead to delays in diagnosis.](https://www.meresearch.org.uk/symptom-invalidation-by-health-professionals-may-lead-to-delays-in-diagnosis/) - A systematic review – a type of study that use repeatable methods to search for, select, and combine all available evidence to answer a specific research question – has been published on the harmful consequences of ‘symptom invalidation’ for people with complex chronic illnesses – including ME/CFS. In a healthcare setting, symptom invalidation – also
- [ME Research UK - May e-newsletter](https://www.meresearch.org.uk/me-research-uk-may-e-newsletter/) - Four Nations Mark International ME Awareness Day At the behest of ME Research UK, the four home nations united to mark International ME Awareness Day 2025 with the Northern Ireland Assembly’s Parliament Buildings, Belfast City Hall, BT Tower, London, Gateshead Millennium Bridge, Cardiff Castle, Edinburgh, and Aberdeen Council’s HQ illuminated in blue in honour of
- [Scottish Good Practice Statement on ME/CFS withdrawn](https://www.meresearch.org.uk/scottish-good-practice-statement-on-me-cfs-withdrawn/) - In Scotland, the primary source of information and guidance from ME/CFS was previously in the Scottish Good Practice Statement on ME/CFS which mirrored but did not tract exactly the various NICE guidelines on ME/CFS which have been issued over time. Since the 2021 NICE guideline was introduced, the Scottish Good Practice Statement on ME/CFS was
- [PolyBio Spring 2025 Symposium recording available](https://www.meresearch.org.uk/polybio-spring-2025-symposium-recording-available/) - A recording of the ‘PolyBio Spring 2025 Symposium’, which took place on the 16th May 2025, has been made available on YouTube. Speakers include the President and Research Director of the PolyBio Research Foundation, Dr Amy Proal, who is currently working on research funded by ME Research UK with the financial support of the Gordon
- [ME Research UK Attends Hope4ME & Fibro NI Stormont Meeting](https://www.meresearch.org.uk/me-research-uk-attends-hope4me-fibro-ni-stormont-meeting/) - I rise to mark the beginning of ME Awareness Week and highlight the ongoing, often invisible, suffering of those living with myalgic encephalomyelitis. That complex and debilitating neurological condition affects thousands across Northern Ireland but remains chronically under-recognised and, in some cases, underserved in our health system. ME can leave individuals housebound or bedroom-bound for
- [For researchers – free samples from the UK ME/CFS Biobank](https://www.meresearch.org.uk/for-researchers-free-samples-from-the-uk-me-cfs-biobank/) - The team at the UK ME/CFS Biobank have asked us to highlight this new initiative offering high-quality samples from the Biobank at no cost. If this is something that may help your research or that of a colleague, there are links to find out more and make an application. Are you interested in receiving free
- [New paper published on the prevalence of ME/CFS](https://www.meresearch.org.uk/new-paper-published-on-the-prevalence-of-me-cfs/) - Approximately 404,000 UK individuals have ME/CFS finds a study by Gemma Samms – a PhD level researcher working on a project funded by ME Research UK, and her supervisor Professor Chris Ponting who leads the DecodeME study. The article, published in the Journal “BMC Public Health” assesses the prevalence of ME/CFS using records of the
- [Using X posts to assess the thoughts and experiences of people with ME/CFS.](https://www.meresearch.org.uk/using-x-posts-to-assess-the-thoughts-and-experiences-of-people-with-me-cfs/) - The thoughts and experiences – such as those shared in public social media postings – of people with a disease are an invaluable source of information for guiding research. Therefore, a research team at McMaster University in Canada set out to explore posts on Twitter – rebranded as X – to understand the concerns and
- [New estimates of ME/CFS prevalence in the UK](https://www.meresearch.org.uk/new-estimates-of-me-cfs-prevalence-in-the-uk/) - Gemma Samms and her supervisor Professor Chris Ponting at the University of Edinburgh have published a study in the journal “BMC Public Health”. This article considers the number of people with a diagnosis of the medical code most closely matching the symptoms of ME/CFS in England (International Classification of Diseases (ICD)-10: G93.3 for “post viral fatigue syndrome”), and
- [Loss of balance and stability when standing and walking in people with ME/CFS.  ](https://www.meresearch.org.uk/loss-of-balance-and-stability-when-standing-and-walking-in-people-with-me-cfs/) - Research has suggested that people with ME/CFS may have postural instability or ‘disequilibrium’ – loss of balance when standing or stability when walking. Disequilibrium is classified as ‘static’ – unstable in an upright position, or ‘kinetic’ – instability when walking or moving on foot. Interestingly, disequilibrium associated with any form of dizziness or vertigo related
- [Economic Cost of ME/CFS and Long-COVID in Germany modelled](https://www.meresearch.org.uk/economic-cost-of-me-cfs-and-long-covid-in-germany-modelled/) - The German charity, the ME/CFS Research Foundation, and risk-modelling company Risklayer have published a report which modelled up-to-date data on the prevalence and societal costs of Long COVID and ME/CFS in Germany. The report, published on International ME Awareness Day (12 May) 2025, discloses that between 2020 and 2024, ME/CFS and Long COVID cost Germany
- [International ME Awareness Day 2025 - thank you](https://www.meresearch.org.uk/international-me-awareness-day-2025-thank-you/) - Yesterday saw a great amount of activity centred on awareness raising for 12th May's International ME Awareness Day. The charity is extremely grateful to the following for their support - The Lord Provost of Aberdeen, Councillor David Cameron.Lord-Lieutenant of Perth and Kinross, Stephen LeckieDeputy Lieutenant Charlie GallagherProvost of Perth and Kinross, Provost Xander McDadeCouncillor Michelle
- [UK's Four Nations unite for International ME Awareness Day 2025](https://www.meresearch.org.uk/uks-four-nations-unite-for-international-me-awareness-day-2025/) - Northern Ireland, Scotland, England, and Wales answered ME Research UK's call to illuminate iconic structures blue to mark International ME Awareness Day 2025. It has been a feature on 12th May for notable landmarks to be illuminated in blue (the colour designated for ME) in solidarity with all those affected by the disease which affectes
- [London marks International ME Awareness Day](https://www.meresearch.org.uk/london-marks-international-me-awareness-day/) - It has been a feature on 12th May for notable landmarks to be illuminated in blue (the colour designated for ME) in solidarity with all those affected. In 2022 Perth was bathed in blue for the night, 2023 was marked in a similar fashion by landmarks in Glasgow, and last year Inverclyde answered ME Research
- [A major exercise study highlights commonalities between ME/CFS and long COVID](https://www.meresearch.org.uk/a-major-exercise-study-highlights-commonalities-between-me-cfs-and-long-covid/) - A US-based research team led by Johanna Squires, and including well-known ME/CFS researcher Dr David Systrom, has published an abstract of a study exploring the physiological similarities between people with ME/CFS and those with long COVID. The study used invasive cardiopulmonary exercise testing (iCPET), which allows for assessment of cardiovascular (blood flow and heart function),
- [Australian ME/CFS Clinical Guidelines – to be published](https://www.meresearch.org.uk/australian-me-cfs-clinical-guidelines-to-be-published/) - ME/CFS remains under-recognised and under-supported worldwide despite its debilitating nature. Until recently, there was no national clinical guideline in Australia adequately addressing the management and care of people with ME/CFS. In June 2024, the Hon Mark Butler MP, Minister for Health and Aged Care, announced that the Australian Government would provide $1.1 million to the
- [Fundraising Focus - May 2025](https://www.meresearch.org.uk/fundraising-focus-may-2025/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Why might Epstein-Barr virus infection lead to ME/CFS in some people and not in others?](https://www.meresearch.org.uk/why-might-epstein-barr-virus-infection-lead-to-me-cfs-in-some-people-and-not-in-others/) - Key points: 30% of ME/CFS cases associated with an infection are thought to be due to Epstein–Barr virus (EBV) – but not everyone who has an EBV infection develops ME/CFS. Researchers in America have designed an ongoing study to investigate why this might be the case. Early findings show that compared with those who recovered
- [Reduced sphingolipid metabolism in ME/CFS](https://www.meresearch.org.uk/reduced-sphingolipid-metabolism-in-me-cfs/) - Research suggests that in people with ME/CFS, the production and breakdown – metabolism, of a major class of fatty compounds called ‘sphingolipids’, is reduced. Interestingly, reduced sphingolipid metabolism has also been observed in other illnesses – such as Q fever fatigue syndrome, where chronic fatigue is a major symptom. According to Junhua Xiao, the author
- [Founders' Science Writing Award 2025: "ME/CFS 2025 – Research Challenges and Opportunities"](https://www.meresearch.org.uk/founders-award-2025/) - In 2024, ME Research UK initiated the “Founders’ Science Writing Award” – a competition established to honour the foresight of the Founders of ME Research UK. The Founders, Dr Vance Spence and Robert McRae who, thanks to the impetus and financial backing of Founding Patron, Roger Jefcoate DL CBE, established a charity which has become
- [Gateshead Millennium Bridge marks International ME Awareness Day 2025](https://www.meresearch.org.uk/gateshead-millennium-bridge-marks-international-me-awareness-day-2025/) - It has been a feature on 12th May for notable landmarks to be illuminated in blue (the colour designated for ME) in solidarity with all those affected. In 2022 Perth was bathed in blue for the night, 2023 was marked in a similar fashion by landmarks in Glasgow, and last year Inverclyde answered ME Research
- [Belfast marks International ME Awareness Day 2025](https://www.meresearch.org.uk/belfast-marks-international-me-awareness-day-2025/) - It has been a feature on 12th May for notable landmarks to be illuminated in blue (the colour designated for ME) in solidarity with all those affected. In 2022 Perth was bathed in blue for the night, 2023 was marked in a similar fashion by landmarks in Glasgow, and last year Inverclyde answered ME Research
- [Edinburgh marks International ME Awareness Day](https://www.meresearch.org.uk/edinburgh-marks-international-me-awareness-day/) - It has been a feature on 12th May for notable landmarks to be illuminated in blue (the colour designated for ME) in solidarity with all those affected. In 2022 Perth was bathed in blue for the night, 2023 was marked in a similar fashion by landmarks in Glasgow, and last year Inverclyde answered ME Research
- [Aberdeen marks International ME Awareness Day 2025](https://www.meresearch.org.uk/cities-of-aberdeen-and-cardiff-mark-international-me-awareness-day-2025/) - It has been a feature on 12th May for notable landmarks to be illuminated in blue (the colour designated for ME) in solidarity with all those affected. In 2022, Perth was bathed in blue for the night, 2023 was marked in a similar fashion by landmarks in Glasgow, and last year Inverclyde answered ME Research
- [Cardiff marks International ME Awareness Day 2025](https://www.meresearch.org.uk/cardiff-marks-international-me-awareness-day-2025/) - It has been a feature on 12th May for notable landmarks to be illuminated in blue (the colour designated for ME) in solidarity with all those affected. In 2022 Perth was bathed in blue for the night, 2023 was marked in a similar fashion by landmarks in Glasgow, and last year Inverclyde answered ME Research
- [Perth marks International ME Awareness Day 2025](https://www.meresearch.org.uk/city-of-perth-marks-international-me-awareness-day-2025/) - The Fair City of Perth, ME Research UK's home, has marked International ME Awareness Day 2025 with a civic reception hosted by the Provost. This honours not only International ME Awareness Day 2025 but also marks the 25th anniversary of the foundation of ME Research UK. The city and ME Research UK acknowledge the commitment
- [Lack of attention to "intra-community inequalities" in ME/CFS may lead to the realities of those in minority groups being erased or misrepresented.](https://www.meresearch.org.uk/lack-of-attention-to-intra-community-inequalities-in-me-cfs/) - Joanne Hunt – a researcher at Uppsala Universitet in Sweden and “person with severe ME/CFS”, has written an article highlighting how the lack of attention given to inequalities between different groups of people with ME/CFS – “intra-community inequalities”, for example, between people with the disease who are from different ethnic groups, leads to the experiences,
- [Parliamenary Question outlines Government Actions on Long COVID](https://www.meresearch.org.uk/parliamenary-question-outlines-government-actions-on-long-covid/) - When Ruth Cadbury MP asked Ashley Dalton MP Parliamentary Under-Secretary (Department of Health and Social Care) about what steps the Dept for Health and Social Care was taking to improve access to treatments for Long COVID, the answer (UIN 45624) provided interesting context for the demands by ME charities, researchers and others for the government
- [Transitioning to adulthood with “CFS/ME”](https://www.meresearch.org.uk/transitioning-to-adulthood-with-cfs-me/) - According to the authors of a study carried out at the University of Wollongong in Australia, there has been very little research exploring experiences of young people with “CFS/ME” as they transition to adulthood. This period of life is important as it is often a time when individuals develop their independence and explore their identity.
- [ME Research UK – April 2025 e-newsletter](https://www.meresearch.org.uk/me-research-uk-april-2025-e-newsletter/) - ME Research UK announces sponsorship of IACFS/ME Conference Poster Competition ME Research UK is proud to announce sponsorship of the IACFS/ME virtual poster competition at the forthcoming Oct 2025 IACFS/ME Conference. ME Research UK views sponsorship at the world’s premier ME/CFS conference as a fitting way to mark a quarter century of vital funding for
- [ME Research UK announces sponsorship of IACFS/ME Conference Poster Competition](https://www.meresearch.org.uk/me-research-uk-announces-sponsorship-of-iacfs-me-conference-poster-competition/) - 2025 ME Research UK Virtual Poster Competition - Hosted by IACFS/ME - October 22- 25, 2025 Virtual Research and Clinical Conference ME Research UK is proud to announce sponsorship of the IACFS/ME virtual poster competition at the forthcoming Oct 2025 IACFS/ME Conference. 2025 marks the 25th anniversary of the foundation of ME Research UK – a charity dedicated to investing
- [Blue Sunday 2025 - The Tea Party for M.E.](https://www.meresearch.org.uk/blue-sunday-2025-the-tea-party-for-m-e/) - Anna Redshaw’s ‘Blue Sunday’ Tea Party For M.E. in aid of various ME charities (including ME Research UK) will be held this year on Sunday 18th May 2025. Since its launch in 2013, the initiative has raised over £140,000 for charities. As Anna explains On Sunday 18th May, people from all over the world will
- [Breakthrough magazine, Spring 2025](https://www.meresearch.org.uk/breakthrough-magazine-spring-2025/) - The Spring 2025 issue of Breakthrough magazine is now available online. This issue includes a look at a newly funded research project using MRI to track changes in the brain, an article from Cort Johnson on finding a biomarker for ME/CFS, an interview with Jente Van Campenhout from Vrije Universiteit Brussel, and much more. Read
- [International ME Awareness Day and World ME Day 2025](https://www.meresearch.org.uk/international-me-awareness-day-and-world-me-day-2025/) - 12th May is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) International Awareness Day and is also promoted as World ME Day. On this important day, organisations and individuals recognise and support the millions of people world-wide who are affected by ME/CFS and other chronic immunological and neurologic diseases by raising public awareness. In fact, 12th May is
- [Scottish Parliament Motion to mark International ME Awareness Day](https://www.meresearch.org.uk/scottish-parliament-motion-to-mark-international-me-awareness-day/) - To raise awareness of ME among politicians at Holyrood ahead of International ME Awareness Day, Liz Smith MSP (who represents ME Research UK's Perth base as regional list MSP for Mid Scotland and Fife), has lodged a Motion at the Scottish Parliament. The Motion also marks ME Research UK's 25th anniversary by highlighting our work
- [ME Research UK Supports International ME research consensus call](https://www.meresearch.org.uk/me-research-uk-supports-international-me-research-consensus-call/) - ME Research UK supports calls for creation of an internationally recognised and operationalised research criteria for ME. In doing so, it joins leading researchers, clinicians, fellow charities, patients, advocates, and supporters from across the globe. As pointed out by the proposal an international effort to create consensus on the criteria and methods for selecting cases
- [Epstein-Barr Virus (EBV) and ME/CFS – Our articles](https://www.meresearch.org.uk/epstein-barr-virus-ebv-and-me-cfs-our-articles/) - The following ME Research UK articles explore the possible links between Epstein-Barr Virus (EBV) and ME/CFS, including its possible role in triggering the disease, potential diagnostic markers, and insights from related conditions. Key facts about EBV and ME/CFSMany individuals report glandular fever, which is caused by EBV, before their ME/CFS onset. Nevertheless, most people will
- [New initiative launched: A proposal for an ME/CFS, Long Covid and Post-Infectious Disease research platform](https://www.meresearch.org.uk/new-campaign-launched-a-proposal-for-an-me-cfs-long-covid-and-post-infectious-disease-research-platform/) - A new campaign has been launched today by Action for ME, ME Research UK and the ME Association based on the work of a group of academics, practitioners, clinicians, charity representatives and people with lived experience of ME, who have been working together to input to the cross-government Delivery Plan on ME/CFS. We have worked together to develop a proposal
- [Are immune cells hyperresponsive in ME/CFS?](https://www.meresearch.org.uk/are-immune-cells-hyperresponsive-in-me-cfs/) - When the body encounters a virus or other pathogen, the immune system can undergo long-lasting changes known as trained immunity. This process involves epigenetic reprogramming – altering gene expression without changing the DNA itself – to help innate immune cells respond more robustly to future threats. In a recent review, Humer et al. propose that
- [Academics, researchers and ME charities unite behind Post-infectious Disease Platform call](https://www.meresearch.org.uk/academics-researchers-and-me-charities-unite-behind-post-infectious-disease-platform-call/) - Academics, researchers and ME charities have united to demand a fundamental change in ME/CFS research in the UK via a considered, viable, and deliverable national research platform. 'An ME/CFS and Post-Infectious Disease Research Platform' is a bold vision demanding the creation of, and funding commitment for, a national ME/CFS research consortium and is in line
- [NINDS-Supported Biospecimen Repository: BioSEND](https://www.meresearch.org.uk/ninds-supported-biospecimen-repository-biosend/) - It is said that one of the challenges facing researchers investigating diseases which affect how the nervous system – the brain, spinal cord and nerves, works is the difficulty collecting and accessing the relevant biological samples, such as blood, saliva, urine and spinal fluid, from participants. These difficulties may arise due to cost – these
- [Help M.E. - concert in aid of ME charities](https://www.meresearch.org.uk/help-m-e-concert-in-aid-of-me-charities/) - Wotton and District Silver Band and Round The Edge Community Choir will be performing at Renishaw's Innovation Centre near Kingswood, Wotton-under-Edge, Gloucestershire on Saturday, April 26 at 2.30pm. The concert will be live-streamed, with all proceeds going to three UK ME charities - including ME Research UK. Performers hope to show support to those affected
- [Parliamentary Questions on ME/CFS - new information](https://www.meresearch.org.uk/parliamentary-questions-on-me-cfs-new-information/) - Question by question small pieces of information on the government's intentions re ME/CFS and the publication of the Delivery Plan are being teased out from Ministers. The latest tranche from MPs John McDonnell (UIN 43407), Dr Al Pinkerton (UIN 42165), and Chris Ward (UIN 43679) elicited a few interesting points from Ashley Dalton MP Parliamentary
- [The Dangers of Misdiagnosis in ME/CFS and Long COVID](https://www.meresearch.org.uk/the-dangers-of-misdiagnosis-in-me-cfs-and-long-covid/) - A significant number of individuals with ME/CFS, and those with long COVID, are all too familiar with the frustration of being misdiagnosed. Individuals may be initially diagnosed with conditions like anxiety or depression, instead of receiving a diagnosis of ME/CFS or long COVID. While other conditions can co-occur, misdiagnosing these diseases can result in missed
- [Can a simple, short screening test distinguish people with a diagnosis of ME/CFS from people who have symptoms of the disease but no diagnosis?](https://www.meresearch.org.uk/can-a-simple-short-screening-test-distinguish-people-with-a-diagnosis-of-me-cfs-from-people-with-me-cfs-like-symptoms/) - Regrettably, late, under- and non-diagnosis of ME/CFS are thought to be common. In fact, a recent study in the UK identified that: “Many people with ME/CFS are experiencing a serious and potentially harmful delay in having their diagnosis confirmed. Many individuals are diagnosed within the first 2 years, but a considerable number are diagnosed after more
- [Delayed diagnosis of ME/CFS](https://www.meresearch.org.uk/delayed-diagnosis-of-me-cfs/) - Building on yesterday’s discussion about misdiagnosis, a recent study conducted by researchers at the University of Exeter, with support from NIHR and the ME Association, reveals concerning findings regarding diagnostic delays - "The results confirmed that many people with ME/CFS are experiencing a serious and potentially harmful delay in having their diagnosis confirmed. Many individuals
- [Improving ME/CFS population sampling](https://www.meresearch.org.uk/improving-me-cfs-population-sampling/) - Estimates of the number of people (prevalence) with ME/CFS are based largely on those who have the code G93.3 for “post-viral fatigue”, which includes “benign myalgic encephalomyelitis”, recorded in their medical notes. Unfortunately, there are several limitations of using this code to estimate the prevalence of ME/CFS, including: The code may not accurately capture
- [“Almost no ME/CFS patients return to work”](https://www.meresearch.org.uk/almost-no-me-cfs-patients-return-to-work/) - ScienceNorway.no – a website which “brings you science news from Norway”, has published an article entitled “Almost no ME/CFS patients return to work” based on a study by Anne Kielland and Jing Liu, which was published earlier this year. The article, written by journalist Emily Wee, discusses the results of the research paper by Kielland
- [Fundraising Focus - April 2025](https://www.meresearch.org.uk/fundraising-focus-april-2025/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Illinois asked to recognise 12th May as ME/CFS Awareness Day](https://www.meresearch.org.uk/illinois-asked-to-recognise-12th-may-as-me-cfs-awareness-day/) - In February 2025, the State of Illinois has designated May as Lyme Disease Awareness month throughout the ‘Land of Lincoln’ and now Illinois' General assembly has been asked to recognise and designate 12th May as ME/CFS Awareness Day. The Bill as presented narrates that - WHEREAS over 65 million people worldwide, including those suffering from
- [Bright light therapy not effective for ME/CFS](https://www.meresearch.org.uk/bright-light-therapy-not-effective-for-me-cfs/) - A randomised control trial found that bright light therapy is not an effective treatment for fatigue in ME/CFS "but it might have beneficial effects on attention." Bright light therapy is used to manage conditions such as seasonal affective disorder, circadian rhythm disorders and sleep disorders, such as insomnia. It typically involves exposure to an artificial
- [Overview of muscle findings in ME/CFS and long COVID](https://www.meresearch.org.uk/overview-of-muscle-findings-in-me-cfs-and-long-covid/) - Former ME Research UK-funded researcher Prof. Dr Carmen Scheibenbogen and Prof. Dr Klaus Wirth summarised muscle research on individuals with ME/CFS, and those with long COVID with post-exertional malaise (PEM). The studies related to skeletal muscle (type of muscle that attaches to bone and helps with movement). Main skeletal muscle findings - Muscle fatigue, weakness
- [ME Research UK - March 2025 e-newsletter](https://www.meresearch.org.uk/me-research-uk-march-2025-e-newsletter/) - Brain Awareness Week 10 - 16th March was Brain Awareness Week, a "global campaign to foster public enthusiasm and support for brain science". Many ME/CFS symptoms – such as problems with concentration, memory and vision – suggest abnormalities in the brain and nervous system, and a great deal of the research we fund is focused
- [Observations from an online workshop on ‘ME research and underserved groups’](https://www.meresearch.org.uk/observations-from-an-online-workshop-on-me-research-and-underserved-groups/) - Observations from an online workshop on ‘ME research and underserved groups’, which took place in July 2024, have been published in the journal ‘Health Expectations’. The workshop was part of a series organised by Monica Bolton – the lead author on the recent publication, who is a ‘person with ME’. Key observations from the
- [Perceptions and clinical approaches of pain management specialists towards ME/CFS](https://www.meresearch.org.uk/perceptions-and-clinical-approaches-of-pain-management-specialists-towards-me-cfs/) - A study in Turkey has investigated the perceptions and clinical approaches of pain management specialists towards ME CFS. Of the 250 pain management specialists invited to take part in the study, 106 (42%) responded to the questionnaire. Regrettably, only 40% of participants had previously heard of ME CFS, and 38% believed the disease to be “a
- [Founders' Award Runner-Up – The Future of ME/CFS Research](https://www.meresearch.org.uk/founders-award-runner-up-the-future-of-me-cfs-research/) - Second place in ME Research UK's Founders' Science Writing Award went to Krista Clarke, who is a postdoctoral research fellow at the University of Surrey. Here is Krista's entry on the development of quantitative diagnostic biomarkers for ME/CFS. The future of ME/CFS research lies in the development of quantitative diagnostic biomarkers for ME/CFS. A biomarker
- [A small study on the prevalence of viral cells in people with ME/CFS.](https://www.meresearch.org.uk/a-small-study-on-the-prevalence-of-viral-cells-in-people-with-me-cfs/) - Earlier this month, a review by Jente Van Campenhout – who is currently working on PhD level research funded by ME Research UK, was published which highlights the potential role of immune exhaustion – a process thought to be driven by prolonged immune activation, such as during chronic viral infections, in ME/CFS. Based on the
- [Founders' Award Winner – The Future of ME/CFS Research](https://www.meresearch.org.uk/founders-award-winner-the-future-of-me-cfs-research/) - ME Research UK’s first Founders’ Science Writing Award was won by Hollie Watmuff. Formerly a postdoctoral research associate at New York University, Hollie is now an Associate Medical Writer. Here is her winning entry on using non-coding RNA to diagnose ME/CFS. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an incurable, debilitating illness that is characterised by
- [Rob Wüst project update](https://www.meresearch.org.uk/rob-wust-project-update/) - Dr Rob Wüst at Vrije Universiteit Amsterdam has recently updated us on the progress of his ME Research UK-funded project investigating microclots in the muscle of people with ME/CFS, and analysing blood vessels and mitochondria in skeletal muscle fibres. The team has completed many of their planned assessments, and some of their initial findings have
- [Educational activity to increase student health professional understanding of ME/CFS in children and adolescents.  ](https://www.meresearch.org.uk/educational-activity-to-increase-student-health-professional-understanding-of-me-cfs-in-children-and-adolescents/) - A study, by a team of researchers in the USA – including Dr Dana Brimmer who has previously published research exploring the lived experience of people with ME/CFS, has investigated the impact of an educational activity to increase understanding of paediatric ME/CFS – ME/CFS in children and adolescents, among 15 medical students, seven physician assistant
- [Immunoadsorption treatment in post-COVID ME/CFS](https://www.meresearch.org.uk/immunoadsorption-treatment-in-post-covid-me-cfs/) - Autoimmunity and immunoadsorption Autoantibodies are a type of antibody that mistakenly attacks the body's own cells and tissues instead of targeting harmful invaders like bacteria or viruses. This autoimmune activity is hypothesised to play a role in long COVID and ME/CFS (although there is debate). Immunoadsorption is a medical treatment that removes specific antibodies, including
- [Connections between energy metabolism and immune regulation in ME/CFS](https://www.meresearch.org.uk/connections-between-energy-metabolism-and-immune-regulation-in-me-cfs/) - Jente Van Campenhout and colleagues at Vrije Universiteit Brussel have recently published a review in the journal, Biomolecules, summarising the evidence connecting energy metabolism (the process of energy production and utilisation in the body) and dysfunction of the immune system in people with ME/CFS. ME Research UK is currently funding Jente's PhD-level research project looking
- [Systematic review on health-related quality of life in ME/CFS and “post COVID-19 condition”.](https://www.meresearch.org.uk/systematic-review-on-health-related-quality-of-life-in-me-cfs-and-post-covid-19-condition/) - A team of researchers in Australia – including Dr Kiran Thapaliya, Professor Sonya Marshall-Gradisnik, and Dr Natalie Eaton-Fitch who are also currently working on research funded by ME Research UK, have reviewed the existing evidence relating to quality of life – the degree to which an individual is healthy, comfortable, able to complete the tasks
- [NHS centre stage in ME/CFS parliamentary written answers](https://www.meresearch.org.uk/nhs-centre-stage-in-me-cfs-written-answers/) - The NHS Constitution for England, hold that six values that should underpin everything done by NHS staff - working together for patients, respect and dignity, commitment to quality of care, compassion, improving lives and everyone counts. For some of those affected by ME/CFS these values have not been adhered to. 'My full reality: the interim
- [New All Party Parliamentary Group on ME formed](https://www.meresearch.org.uk/new-all-party-parliamentary-group-on-me-formed/) - Forming an All Party Parliamentary Group is not simple but is highly beneficial to a cause to have a forum where legislators and interested parties can meet and act within the seat of government. On 17th December 2024 a new APPG on ME held its inaugural meeting and was subsequently entered on the Register of
- ["Coordinated international efforts and substantial financial" required address complex challenges in ME/CFS research.](https://www.meresearch.org.uk/coordinated-international-efforts-and-substantial-financial-required-address-complex-challenges-in-me-cfs-research/) - A review paper from Dr Karl Morten’s team has highlighted that “complex chronic illnesses” ME/CFS, fibromyalgia, and Gulf War Syndrome (GWS) not only have common symptoms such as fatigue and pain but also display “significant overlap in the molecular and cellular disruptions” including: Dysregulation in the complex biochemical processes that involve the synthesis, breakdown, and
- [Brain Awareness Week](https://www.meresearch.org.uk/brain-awareness-week/) - Today is the beginning of Brain Awareness Week, a "global campaign to foster public enthusiasm and support for brain science". Many of the symptoms of ME/CFS (such as problems with concentration, memory and vision) indicate abnormalities in the brain and nervous system, and a great deal of the research we fund is focused on this
- [Managing energy and shaping care – insights from adults with ME/CFS](https://www.meresearch.org.uk/managing-energy-and-shaping-care-insights-from-adults-with-me-cfs/) - A study (behind paywall) published in the American Journal of Medicine used co-production – a research method which involves including people who are not researchers in the design and conduct of research, to work alongside eight people with ME/CFS and three “health practitioners” to explore: - Perspectives on approaches to energy management.- How their understanding
- [World Sleep Day 2025](https://www.meresearch.org.uk/world-sleep-day-2025/) - World Sleep Day, an annual event organised by the World Sleep Society, aims to raise awareness of sleep-related issues and promote better management of sleep disorders. This year’s theme, “Make Sleep Health a Priority,” highlights the importance of prioritising sleep for overall wellbeing. For individuals with ME/CFS, sleep disturbances are a core feature of the
- [Natural killer (NK) cell dysfunction in ME/CFS](https://www.meresearch.org.uk/natural-killer-nk-cell-dysfunction-in-me-cfs/) - Cytotoxicity refers to the ability of a cell to kill another cell. This function is crucial in the immune system and is carried out by several immune cells, including natural killer (NK) cells, which destroy infected and diseased cells. A meta-analysis – a comprehensive review combining data from multiple studies – conducted by a research
- [5 long COVID sub-types identified via US's RECOVER COVID research](https://www.meresearch.org.uk/5-long-covid-sub-types-identified-via-uss-recover-covid-research/) - The US's National Institutes of Health's 'Researching COVID to Enhance Recovery' (RECOVER) initiative has released updated research which identifies 5 distinct symptom sub-types which may aid doctors diagnose long COVID. The National Academies of Sciences, Engineering, and Medicine (NASEM) defines long COVID as a heterogeneous (diverse), infection-associated chronic condition present for at least 3 months
- [Join ME Research UK for KiltWalk 2025](https://www.meresearch.org.uk/join-me-research-uk-for-kiltwalk-2025/) - Kiltwalk is a unique charity that enables walkers to raise money for any Scottish charity and, as ME Research UK is based in Perth, we are eligible to participate - but we need your help. Thanks to Sir Tom Hunter and the Hunter Foundation every pound raised is used to support of work. 2024 saw
- [Fundraising Focus - March 2025](https://www.meresearch.org.uk/fundraising-focus-march-2025/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [ME Research UK - February 2025 e-newsletter](https://www.meresearch.org.uk/me-research-uk-february-2025-e-newsletter/) - New findings from Australia ME Research UK-funded research at Griffith University in Australia has found enlargement of the hippocampus in people with ME/CFS and in those with long COVID. The increase in volume was also found to be related to the severity of the diseases, and may contribute to symptoms such as memory and concentration
- [Will ME/CFS Delivery Plan be published in March?](https://www.meresearch.org.uk/will-delivery-plan-we-published-in-march/) - Has the timetable for publication of the Delivery Plan for ME/CFS slipped? It had been the firm intention of government to publish the Plan next month (March) but matters may no longer be so certain. When answering Baroness Scott of Needham Market's question (UIN HL4997) on "government plans, if any, to introduce a goal of
- [A comparison of GWAS analyses of post treatment Lyme disease syndrome, ME/CFS, and fibromyalgia.](https://www.meresearch.org.uk/a-comparison-of-gwas-analyses-of-post-treatment-lyme-disease-syndrome-me-cfs-and-fibromyalgia/) - Lyme disease is caused by the bacteria Borrelia burgdorferi, transmitted through the bite of an infected tick. Although Lyme disease can be treated using antibiotics, research has suggested that 10% to 20% of cases do not resolve following the course of medication, leading to a collection of symptoms such as debilitating fatigue, muscle and joint
- [Parliamentary questions on ME research funding, NHS digitisation and UK-wide co-ordination.](https://www.meresearch.org.uk/parliamentary-questions-on-me-research-funding-nhs-digitisation-and-uk-wide-co-ordination/) - Wendy Chamberlain MP and Life Peeress Baroness Finlay of Llandaff addressed written questions to the Department of Health and Social Care on topics of interest to those affected by ME/CFS. Ms Chamberlain's centered on the government's intentions to ensure that the cross-government delivery plan for ME/CFS establishes a common UK-wide approach (UIN 31519) whilst Baroness
- [US states to mark International ME Awareness Day](https://www.meresearch.org.uk/us-states-to-mark-international-me-awareness-day/) - Since 1992 12th May has been recognised as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) International Awareness Day. On this important day, organisations and individuals recognise and support the millions of people world-wide who are affected by ME/CFS and other chronic immunological and neurologic diseases by raising public awareness. In fact, 12th May is International Awareness Day
- [Language matters – What health professionals should not say to people with ME/CFS.](https://www.meresearch.org.uk/language-matters-what-health-professionals-should-not-say-to-people-with-me-cfs/) - People with ME/CFS – and other “complex chronic disorders” such as long COVID, dysautonomia – disturbance or dysfunction of the autonomic nervous system that is responsible for regulating processes in the body that occur without our conscious control, and those involving chronic pain, and chronic fatigue, often have difficulty getting “effective and compassionate medical care”
- [Review on cognitive dysfunction in ME/CFS published](https://www.meresearch.org.uk/review-on-cognitive-dysfunction-in-me-cfs-published/) - A research team including Professor Simon Carding – who is currently working on a project funded by ME Research UK, has published an article reviewing evidence on relationship between infection, inflammation, and cognitive dysfunction – brain fog, in people with ME/CFS. The researchers state that in ME/CFS, brain fog may be a result of ongoing
- [Government reject calls for specific ME/CFS research Centre of Excellence](https://www.meresearch.org.uk/government-reject-calls-for-me-cfs-research-centres-of-excellence/) - In addition to her parliamentary question on funding for the ME/CFS Delivery Plan, Jo Platt MP also tabled a parliamentary written question (UN29111) answered by the newly appointed Parliamentary Under-Secretary for Health and Social Care (Ashley Dalton MP) on establishing a centre of excellence for care and research for infection-associated chronic conditions - such as
- ["Plan to help ME sufferers has been delayed for too long" - Helen Morgan MP](https://www.meresearch.org.uk/plan-to-help-me-sufferers-has-been-delayed-for-too-long-helen-morgan-mp/) - In 'The Times' 18th Feb 2025 (free via sign-up) Helen Morgan MP summarises well in a short comment piece not only on the need for swift action on publication of the government's Delivery Plan for ME/CFS but also challenges the government on both the Plan's scope and its drive. However, the call may already have
- ["There are currently no plans to allocate additional funding towards the ME/CFS final delivery plan." DHSC](https://www.meresearch.org.uk/there-are-currently-no-plans-to-allocate-additional-funding-towards-the-me-cfs-final-delivery-plan-dhsc/) - When the government released the results of its Consultation on the draft Delivery Plan on ME/CFS on 19th December 2024 it disclosed that 3,338 responses were received – 47 were from organisations – including the views of ME Research UK 3,113 were from individuals sharing their personal views 53 were from individuals responding on behalf
- [CBT and GET studies show ME/CFS and long COVID are physical not psychological](https://www.meresearch.org.uk/cbt-and-get-studies-show-me-cfs-and-long-covid-are-physical-not-psychological/) - Dr Mark Vink and Alexandra Vink-Niese published an article which highlighted the complexities and biological abnormalities of ME/CFS, for example in relation to "immunological and inflammatory pathways, autonomic and neurological dysfunction, ... cellular energy production and ... gene expression." They emphasise that extensive research has demonstrated the ineffectiveness of cognitive behavioural therapy (CBT) and graded
- [How artificial intelligence (AI) can help in ME/CFS](https://www.meresearch.org.uk/how-artificial-intelligence-ai-can-help-in-me-cfs/) - A team of Australian researchers recently published a research review analysing the potential of artificial intelligence (AI) to impact ME/CFS research and healthcare. AI plays a crucial role in precision medicine – an approach which aims to develop personalised treatments by analysing large datasets, including aspects such as genetic profiles, medical history, and social factors.
- [Brighton Marathon - only 3 weeks to claim a place](https://www.meresearch.org.uk/brighton-marathon-only-3-weeks-to-claim-a-place/) - The Brighton Marathon is one of the UK’s most iconic and scenic races. This year’s event is sold out for individual entries and so the only way to enter is via a charity place – and ME Research UK has 2 places remaining for the 6th April 2025 event which must be allocated by 13th
- [New research suggests “racial disparities in the diagnostic process for ME/CFS”](https://www.meresearch.org.uk/new-research-suggests-racial-disparities-in-the-diagnostic-process-for-me-cfs/) - Prof. Jarred Younger, who is currently working on research funded by ME Research UK, and Chloe Lisette Jones have published a paper in the International Journal of Environmental Research and Public Health which considers which characteristics – including self-reported “race”, are associated with receiving an ME/CFS diagnosis. The researchers analysed 1,110 responses to an online
- [Hippocampus enlargement detected in ME/CFS and long COVID patients](https://www.meresearch.org.uk/hippocampus-enlargement-detected-in-me-cfs-and-long-covid-patients/) - ABC News in Australia have recently reported on an ME Research UK-funded study at Griffith University showing enlargement of the hippocampus in people with ME/CFS. The hippocampus is a region of the brain involved in memory and learning, and these abnormalities may therefore contribute to some of the symptoms of the disease including memory and
- [Illinios designates May as Lyme Disease Awareness Month](https://www.meresearch.org.uk/illinios-designates-may-as-lyme-disease-awareness-month/) - The US State of Illinois has designated May as Lyme Disease Awareness month throughout the 'Land of Lincoln'. Again, it is worthwhile considering the narration of facts contained within the legislation which underpins the statute. In the United States, 35,000 to 45,000 cases of Lyme disease are reported to the Centers for Disease Control and
- [International ME Awareness Day and World ME Day 2024](https://www.meresearch.org.uk/international-me-awareness-day-2024/) - 12th May is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) International Awareness Day and is also promoted as World ME Day. On this important day, organisations and individuals recognise and support the millions of people world-wide who are affected by ME/CFS and other chronic immunological and neurologic diseases by raising public awareness. In fact, 12th May is
- [Wages earned and prognosis of ME/CFS ](https://www.meresearch.org.uk/wages-earned-and-prognosis-of-me-cfs/) - The serious, complex, and often long-term nature of ME/CFS, means that the disease often impacts a person’s ability to work. Due to the debilitating nature of their symptoms, many people with the disease are only able to work part-time while others are unable to work at all. Prognosis – the likely outcome or course of
- [Importance of political will in ME/CFS Delivery Plan process](https://www.meresearch.org.uk/importance-of-political-will-in-delivery-plan-process/) - The sacking on 8th February 2025 of Andrew Gwynne MP as Parliamentary Under-Secretary (Department of Health and Social Care) has removed the Minister most closely associated with finalising the Delivery Plan for ME/CFS. In fact, only at end of January 2025, he provided an update which confirmed the goal of publishing the oft-delayed Delivery Plan
- [Biological changes relating to PEM.](https://www.meresearch.org.uk/biological-changes-relating-to-pem/) - A study published in the International Journal of Molecular Sciences by James Baraniuk considered whether specific markers in cerebrospinal fluid – the colourless body fluid found within the tissue that surrounds the brain and spinal cord, differed between: People with ME/CFS and people without the disease (controls) before exercise. Before and after exercise in people
- [The search for a blood-based biomarker for ME/CFS](https://www.meresearch.org.uk/the-search-for-a-blood-based-biomarker-for-me-cfs/) - Dr Krista Clarke and colleagues at the University of Surrey, along with members of the ME/CFS Biobank team at the London School of Hygiene and Tropical Medicine, have recently published a review looking at potential blood-based diagnostic markers for ME/CFS. The group is jointly funded by ME Research UK and the ME Association Ramsay Research Fund for a
- [Endothelial dysfunction in ME/CFS - our articles](https://www.meresearch.org.uk/endothelial-dysfunction-in-me-cfs-our-articles/) - The endothelium – a thin layer of cells lining every blood vessel – plays a pivotal role in regulating blood flow, blood clotting, and inflammatory responses. Research suggests that ME/CFS may involve damage to the endothelium leading to endothelial dysfunction (improper functioning of the endothelium), which contributes to disease manifestations. Below are articles we have
- [Fundraising Focus - February 2025](https://www.meresearch.org.uk/fundraising-focus-february-2025/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [EU ME/CFS research funding Update](https://www.meresearch.org.uk/eu-me-cfs-research-funding-update/) - The European Parliament’s historic vote on 17th June 2020 urging the Commission to transform the ME research landscape was widely acclaimed as a major step forward. The problem being that a Resolution of the European Parliament is not binding and merely a request to the Commission to act. On 1 December 2021 the Parliament's Petition
- [ME Research UK : January 2025 e-newsletter](https://www.meresearch.org.uk/me-research-uk-january-2025-e-newsletter/) - ME Research UK 25 years of informing, influencing and investing in ME 2025 marks a milestone in the history of ME Research UK, as this year the charity marks 25 years since its foundation. As an organisation, our dearest wish is that sustained major funding into ME/CFS becomes available, leading to a cure or effective
- [UK Parliamentary Question on progress since Maeve Boothby O'Neill's death](https://www.meresearch.org.uk/uk-parliamentary-question-on-progress-since-maeve-boothby-oneills-death/) - When the assistant Coroner who presided over the Inquiry into the death of Maeve Boothby O'Neill stated that "During the course of the inquest the evidence revealed matters giving rise to concern. In my opinion there is a risk that future deaths could occur unless action is taken." it prompted her to take the highly
- [Walk for ME 2025](https://www.meresearch.org.uk/walk-for-me-2025/) - ME Research UK is grateful once more to be chosen as one of the featured charities for 2025’s Walk for ME scheme. Now in its thirteenth consecutive year, the scheme has encouraged supporters to walk, run, swim and ride – in places as diverse as Ireland, Spain, New Zealand, Australia, Malaysia, Israel, and the USA, as well as here
- [ME/CFS, Orthostatic Intolerance, and the Tilt Table Test](https://www.meresearch.org.uk/me-cfs-orthostatic-intolerance-and-the-tilt-table-test/) - Background Individuals with ME/CFS often report experiencing orthostatic intolerance – symptoms, such as light-headedness and feeling weak, when sitting- or standing up, leading to difficulty tolerating an upright posture. These symptoms are relieved by lying down. Orthostatic intolerance is thought to occur as a result of abnormal blood flow to the brain. Postural orthostatic tachycardia
- [VADYS-ME project](https://www.meresearch.org.uk/vadys-me-project/) - In December 2024, 21 new ME/CFS research projects were announced in Germany, funded by the Federal Ministry of Education and Research (BMBF) – costing approximately 15 million Euros. On the 27th January 2025, the German Centre of Cardiovascular Research (DZHK) provided more information about one of these projects – the 2.6 million euro “VADYS-ME" project,
- [People with ME/CFS share in their own words.](https://www.meresearch.org.uk/people-with-me-cfs-share-in-their-own-words/) - Key messages ME/CFS is a serious, complex, and often misunderstood disease which can vary over time and between individuals meaning it is very diverse. Dr Dana Brimmer and colleagues recognised the diversity of the disease and noted that many people with ME/CFS “often feel misunderstood and report facing barriers to healthcare utilization”. To explore the
- [Nuno Sepúlveda – “When PACE-Gate Meets Sample Size Calculations”.](https://www.meresearch.org.uk/nuno-sepulveda-when-pace-gate-meets-sample-size-calculations/) - Dr Nuno Sepúlveda – who completed his ME Research UK-funded project looking at the potential role of Epstein-Barr virus infection in the development of ME/CFS in 2023, has published a conference paper in the journal “ New Frontiers in Statistics and Data Science entitled “When PACE-Gate Meets Sample Size Calculations”. The short paper – which is
- [ME Research UK – 25 years of Informing, Influencing and Investing in ME research](https://www.meresearch.org.uk/me-research-uk-25-years-of-informing-influencing-and-investing-in-me-research/) - 2025 marks a milestone in the history of ME Research UK, as this year the charity marks 25 years since its foundation. As an organisation, our dearest wish is that sustained major funding into ME/CFS becomes available, leading to a cure or effective treatment. It is at that point that ME Research UK could withdraw.
- [NIH RECOVER initiative - Incidence and Prevalence of Post-COVID-19 ME/CFS](https://www.meresearch.org.uk/nih-recover-initiative-incidence-and-prevalence-of-post-covid-19-me-cfs/) - Through the NIH RECOVER initiative, the Bateman Horne Center had the opportunity to study the long-term health impacts of COVID-19, including its role in triggering ME/CFS. They report - "Of the 4,515 participants who enrolled within 30 days of contracting COVID-19, 73 developed ME/CFS at least six months post-infection. In total, 531 participants met ME/CFS
- [Discriminating ME/CFS and other medical problems using data from the UK Biobank](https://www.meresearch.org.uk/discriminating-me-cfs-and-other-medical-problems-using-data-from-the-uk-biobank/) - Symptoms of ME/CFS – such as pain, fatigue, and cognitive difficulties, often overlap with other medical problems making diagnosis difficult. Therefore, researchers working on a study – now published in the Nature journal “Communications Medicine”, used data from the UK Biobank to investigate whether they could find a way to easily identify people with the
- [Brighton Marathon 2025 - fundraise for ME Research UK](https://www.meresearch.org.uk/brighton-marathon-2025-fundraise-for-me-research-uk/) - The Brighton Marathon is one of the UK’s most iconic and scenic races. Next year's event is sold out for individual entries and so the only way to enter is via a charity place - and ME Research UK has 3 guaranteed entries for the 6th April 2025 event which must be allocated by 13th
- [2024 in Research: Failure to Respond](https://www.meresearch.org.uk/2024-in-research-failure-to-respond/) - Cort Johnson from the Health Rising blog looks back at some of his highlights from the last year in the world of ME/CFS research. What phrase better encapsulates ME/CFS than "a failure to respond"? You try to walk down the block and become exhausted. You fail to comprehend reading material you used to gobble up. You fail
- [Cardiff Half Marathon - 5 run for ME Research UK](https://www.meresearch.org.uk/cardiff-half-marathon-5-run-for-me-research-uk/) - The Cardiff Half Marathon is one of the UK’s most iconic and scenic races. This year’s event is sold out for individual entries but we have a team of 5 running in aid of ME Research UK. Since its first run in 2003, where 1,500 participated it has grown to encompass over over 27,500 registered
- [T cell exhaustion in ME/CFS](https://www.meresearch.org.uk/t-cell-exhaustion-in-me-cfs/) - T cells are white blood cells that help the body’s immune system to fight infections through destroying threats like viruses and infected cells. There is growing evidence that, in ME/CFS, T cell exhaustion (often referred to as immune exhaustion) is occurring – a state where T cells are chronically stimulated and become so overworked that
- [Impact of ME/CFS on Quality of Life ](https://www.meresearch.org.uk/impact-of-me-cfs-on-quality-of-life/) - Quality of life is the degree to which an individual is healthy, comfortable, able to complete the tasks of daily living, and to enjoy life events. It is defined by the World Health Organisation as: “An individual's perception of their position in life in the context of the culture and value systems in which they
- [Assessment of cognitive difficulties in ME/CFS ](https://www.meresearch.org.uk/assessment-of-cognitive-difficulties-in-me-cfs/) - Key points Cognitive difficulties are one of the four key symptoms required for a diagnosis of ME/CFS under the 2021 NICE guidelines. Research suggests that physical exertion worsens cognitive dysfunction in people with ME/CFS but findings are inconsistent due to factors such as small sample size and varying measures of cognitive function. The authors of a
- [Fundraising Focus - December 2024](https://www.meresearch.org.uk/fundraising-focus-december-2024/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Actions reported in light of Maeve Boothby O'Neill's Inquest](https://www.meresearch.org.uk/actions-reported-in-light-of-maeve-boothby-oneills-inquest/) - It has been reported that responses have been received from parties named in the assistant Coroner's preventing future deaths report issued in light of the death of Maeve Boothby O'Neill. The Department of Health and Social Care, NHS England, the National Institute for Health and Care Excellence (NICE), the Medical Research Council (MRC), the National
- [Details of Consultation on Interim Delivery Plan  released](https://www.meresearch.org.uk/details-of-consultation-on-interim-delivery-plan-released/) - October 2023 saw the conclusion of the consultation phase on the UK Department of Health and Social Care (DHSC) ‘My full reality: the interim delivery plan on ME/CFS‘ . ME Research UK commented fully on the provisions as they relate to research and the limitations the charity saw in the plans. 3,338 responses were received
- [My full reality: the interim delivery plan on ME/CFS – Our response part 1](https://www.meresearch.org.uk/interim-delivery-plan-our-response-1/) - My full reality: the interim delivery plan on ME/CFS was published by the Department of Health and Social Care (DHSC) on 9 August 2023. Consultation on the plan is now open to UK residents aged 13 and over, and will close on 4 October 2023. The document was developed around three key themes: research, attitudes and education, ad
- [My full reality: the interim delivery plan on ME/CFS – Our response part 2](https://www.meresearch.org.uk/interim-delivery-plan-our-response-2/) - My full reality: the interim delivery plan on ME/CFS was published by the Department of Health and Social Care (DHSC) on 9 August 2023. Consultation on the plan is now open to UK residents aged 13 and over, and will close on 4 October 2023. The document was developed around three key themes: research, attitudes and education, and
- [Our most-shared articles of 2024](https://www.meresearch.org.uk/our-most-shared-articles-of-2024/) - It’s a new year but, in case you missed them, here are five of our most-shared articles of 2024 – What makes ME/CFS so debilitating? - https://bit.ly/3ypTTyR Research shows that ME/CFS is a biological illness – so why do some people still think it is psychological in nature? – https://tinyurl.com/art2601 Severe ME Day -
- [Scottish Government pledge £4.5 million to deliver new specialist support for ME, CFS, and Long Covid](https://www.meresearch.org.uk/scottish-government-pledge-4-5-million-to-deliver-new-specialist-support-for-me-cfs-long-covid/) - ..... for those suffering from Long Covid, additional £4.5 million to deliver new specialist support across the country for Long Covid, ME, Chronic Fatigue, and other similar conditions. The draft Scottish Budget for 2025/26 was delivered by Shona Robison MSP, Scotland's Finance Secretary to Holyrood on 4th December and (page 12) contained the above commitment.
- [Scottish Government outline how £4.5m funding will aid NICE ME/CFS guideline implementation](https://www.meresearch.org.uk/scottish-government-outline-how-4-5m-funding-will-aid-nice-me-cfs-guideline-implementation/) - The draft Scottish Budget for 2025/26 was delivered by Shona Robison MSP, Scotland’s Finance Secretary to Holyrood on 4th December and contained a commitment for an 'additional £4.5 million to deliver new specialist support across the country for Long Covid, ME, Chronic Fatigue, and other similar conditions.' As the Scottish government is a minority one
- [2023/24 - Our Charity Year in Review - Influencing](https://www.meresearch.org.uk/2023-24-our-charity-year-in-review-influencing/) - Highlights of the charity year included the following: ME Research UK was an active participant in the Department for Health and Social Care’s ME/CFS Delivery Plan under the auspices of the UK Clinical Research Collaboration’s ME/CFS Research Subgroup. This structure being part of the former Secretary of State’s initiative and reports directly to the Chair
- [Chair of ME Research UK discusses the Big Give Christmas Challenge 2024](https://www.meresearch.org.uk/chair-of-me-research-uk-discusses-the-big-give-christmas-challenge/) - Jonathan Davies, chair of ME Research UK, shares about the Big Give Christmas Challenge. Donate here Read more about the Big Give
- [Big Give 2024 - Huge thank you!](https://www.meresearch.org.uk/big-give-2024-huge-thank-you/) - Thank you so much to our Pledgers, to The Big Give Trust, and to every donor and supporter who has contributed to making this year's Big Give Christmas Challenge such a huge success. Believe us when we say that we know it has been a financially tough year for so many people and we are
- [Autoimmunity and ME/CFS](https://www.meresearch.org.uk/autoimmunity-and-me-cfs/) - Research highlighting the role of the immune system in ME/CFS has led some scientists to suggest that autoimmune mechanisms may play a role in the development of the disease. However, as ME/CFS is complex, and differs both between people, and within the same individual over time, findings have been inconsistent Autoimmunity is a state in
- [Christmas cards 2024](https://www.meresearch.org.uk/christmas-cards-2024/) - Our Christmas cards are still available to buy via email, phone, post or our online shop. There are now just two designs still available, so shop now before they're gone as well. Every purchase helps to support our work investing in ME research, and we are so grateful to everyone who supports us in this
- [Maeve Boothby O'Neill's Inquest Evidence Hearing ends](https://www.meresearch.org.uk/maeve-boothby-oneills-inquest-evidence-hearing-ends/) - During the fortnight-long proceedings at Exeter Coroner's Court, assistant Coroner Deborah Archer has presided over a hearing which has proven to be highly emotional for all concerned, but also focused the attention of the media and the medical profession on the 'care' provided to those with severe ME, specifically by the Royal Devon and Exeter
- [Maeve Boothby O'Neill - Coronor to issue a prevention of future deaths report](https://www.meresearch.org.uk/maeve-boothby-oneill-coronor-to-issue-a-a-prevention-of-future-deaths-report/) - On 9 August 2024 when the assistant Coroner delivered her verbal findings stating that she found that Ms Boothby O’Neill died of natural causes “because of severe myalgic encephalomyelitis (ME)” it was also announced that a further hearing would be held on 27 September where the assistant coroner would hear evidence about making a preventing
- [Maeve Boothby O’Neill’s Inquest – Coroner’s conclusions](https://www.meresearch.org.uk/maeve-boothby-oneills-inquest-coroners-conclusions/) - Almost 3 years after her death, a full Coroner’s Inquiry opened on 22 July 2024 examining the circumstances surrounding the death of 27-year-old Maeve Boothby O’Neill from severe ME. Presided over by assistant Coroner Deborah Archer, the two-week Inquiry looked at her ‘care’ at the Royal Devon and Exeter Hospital from January 2021 until her
- [How Coroner’s Inquiry into death of Maeve Boothby O’Neill unfolds - in quotes with media links - Week 2](https://www.meresearch.org.uk/how-coroners-inquiry-into-death-of-maeve-boothby-oneill-unfolds-in-quotes-with-media-links-week-2/) - The inquest into the events surrounding the death of Maeve Boothby O’Neill on October 3, 2021 is presently being held at Exeter Coroner’s Court, County Hall, Exeter (from 22 July to 2 August 2024). In summary and to capture the essence of issues regarding the ‘care’ given to those with severe ME and to Maeve in particular,
- [How Coroner’s Inquiry into death of Maeve Boothby O’Neill unfolds - in quotes with media links - Week 1](https://www.meresearch.org.uk/how-coroners-inquiry-into-death-of-maeve-boothby-oneill-unfolds-in-quotes-with-media-links/) - The inquest into the events surrounding the death of Maeve Boothby O’Neill on October 3, 2021 is presently being held at Exeter Coroner's Court, County Hall, Exeter (from 22 July to 2 August 2024 with the Coroner recording her conclusions on 9th August). In summary and to capture the essence of issues regarding the 'care'
- [Coroner's Inquiry Opens into death of Maeve Boothby O’Neill](https://www.meresearch.org.uk/coroners-inquiry-opens-on-death-of-maeve-boothby-oneill/) - Almost 3 years after her death, a full Coroner's Inquiry will open on 22 July 2024 examining the circumstances surrounding the death of 27-year-old Maeve Boothby O’Neill from severe ME. The two-week Inquiry will look at her 'care' at the Royal Devon and Exeter Hospital, delays in palliative care, and the wider lack of understanding
- [2023/24 - Our Charity Year in Review - Informing](https://www.meresearch.org.uk/2023-24-our-charity-year-in-review-informing/) - During 2023/24, the charity continued its role as an independent, science-centred provider of high-quality information and education for key decision-makers, healthcare professionals and those affected directly or indirectly by ME/CFS. In addition to the capacity to provide speakers for external events – to discuss ME Research UK’s role, its achievements and to provide insight into
- [2023/24 - Our Charity Year in Review - Investing](https://www.meresearch.org.uk/2023-24-our-charity-year-in-review-investing/) - Investing in Biomedical Research into the causes, consequences and treatment of ME/CFS Through the provision of funds, we aim to: Be an accessible source of finance for scientifically sound research from researchers (normally) at the beginning of their careers. Fund projects, the results of which produce findings to enrich the research world’s understanding of ME/CFS.
- [2023/24 - Our Charity Year in Review - Introduction](https://www.meresearch.org.uk/2023-24-our-charity-year-in-review-introduction/) - Our Vision and Mission ME Research UK’s vision is to end the suffering caused by ME/CFS by investing in high quality, scientific (biomedical) research into the causes, consequences and treatment(s) of the illness. Only through biomedical research will the disease be understood, accepted, and real change to the lived experience of those with the illness
- [Written Questions on classifying ME/CFS in Primary Care via SNOMED CT](https://www.meresearch.org.uk/written-question-on-classifying-me-cfs-in-primary-care/) - When MP John McDonald asked how standardised health record codes are created (UIN 12357) for use within the NHS and whether the Minister would ensure that a code is created for myalgic encephalomyelitis in the SNOMED CT (Systematized Nomenclature of Medicine Clinical Terms) UK classification system (UIN 12359) in primary care, the response from Karin
- [New ME/CFS research projects in Germany  ](https://www.meresearch.org.uk/new-me-cfs-research-projects-in-germany/) - Following a guideline published in September 2023, which promoted interdisciplinary ME/CFS research, 21 new ME/CFS research projects in Germany – including six new collaborations, have been announced – and funded, by the Federal Ministry of Education and Research (BMBF). With funding of around 15 million euros, over the next three years the research projects aim
- [Big Give Christmas Challenge 2024 - donate today](https://www.meresearch.org.uk/big-give-christmas-challenge-2024-donate-today/) - Big Give Christmas Challenge 2024 is live from noon 3rd December to noon 10th December. All funds raised by ME Research UK will be dedicated to investing in ME/CFS biomedical research globally. What's more donations will be doubled. The first £14,100 in donations will be doubled by our Pledgers and the next £14,100 by our
- [Spend Christmas with ME](https://www.meresearch.org.uk/spend-christmas-with-me/) - Tina Katsaros – a PhD student at La Trobe University in Melbourne, Australia, who is working on research funded by ME Research UK, has organised a festive online community event to bring together people with lived experience of ME/CFS and researchers in the field this Christmas. The event will take place from to the 20th
- [Interview with Tina Katsaros](https://www.meresearch.org.uk/interview-with-tina-katsaros/) - In a recent interview for Breakthrough magazine, Tina Katsaros – a PhD student at La Trobe University in Australia, who is working on research funded by ME Research UK, tells us more about herself, her project, what led her to be involved ME/CFS research – and what she has learned so far. Read the full
- [ME Research UK – enewsletter November 2024](https://www.meresearch.org.uk/me-research-uk-enewsletter-november-2024/) - ME Research UK summarises NICE 2021 ME/CFS guideline Due to inadequate training of healthcare professionals about ME/CFS, those with the disease often face scepticism and dismissive attitudes. The NICE 2021 ME/CFS guideline highlights the impact of the disease and provides recommendations for individualised care. Whilst not a substitute for comprehensive education, adoption of the guidelene
- [Immune exhaustion in ME/CFS and long COVID](https://www.meresearch.org.uk/immune-exhaustion-in-me-cfs-and-long-covid/) - A recent study, from researchers in Australia, examined the immune systems of individuals with ME/CFS and long COVID, focusing on immune exhaustion – a state in which the immune system becomes less effective over time. Immune exhaustion is an area that has been garnering increasing attention in ME/CFS research. Methods The researchers analysed changes in
- [Letter to the Editor  – On the prevalence of ME/CFS after a SARS-CoV-2 infection.](https://www.meresearch.org.uk/letter-to-the-editor-on-the-prevalence-of-me-cfs-after-a-sars-cov-2-infection/) - Dr Nuno Sepúlveda and Dr Francisco Westermeier – researchers who have previously worked on projects funded by ME Research UK, have written a letter to the editor of the Journal of Infection in response to a systematic review – a type of study that uses repeatable methods to search for, select, and combine all available
- [Scottish Government Update on ME/CFS services in Scotland](https://www.meresearch.org.uk/scottish-government-update-on-me-cfs-services-in-scotland/) - The results from an autumn 2022 survey completed by ten (of fourteen) NHS Health Boards in Scotland was released by the Scottish Government on 16th May 2023. It aimed to understand delivery of ME/CFS services in Scotland, implementation of the updated ME/CFS NICE guidelines, barriers and opportunities to implementing the guidelines, and options for future
- [Participants wanted](https://www.meresearch.org.uk/participants-wanted/) - We are currently supporting Doug Barrett and Anosh Altaf's project looking at the impact of ME/CFS on visual perception and sustained attention. The researchers are now looking for people with a diagnosis of ME/CFS or long COVID, and healthy individuals to participate in the study, which will take place at the University of Leicester. If
- [ME/CFS in children and young people – World Children’s Day 20th November 2024](https://www.meresearch.org.uk/me-cfs-in-children-and-young-people-world-childrens-day-20th-november-2024/) - Key points Both children and young people, under the age of 18 years old, can develop ME/CFS. The debilitating symptoms of ME/CFS on children and young people can have a huge impact on day-to-day family life, and a detrimental effect on the experiences of a child at school and on extra-curricular activities. The proportion of
- [NICE 2021 Guideline for ME/CFS - Key Recommendations for Better Care](https://www.meresearch.org.uk/nice-2021-guideline-for-me-cfs-key-recommendations-for-better-care/) - Individuals with ME/CFS often face scepticism and dismissive attitudes when trying to navigate the healthcare system. A major contributory factor is inadequate training of health and social care professionals, and thus a lack of understanding about the condition. Nevertheless, it is important to recognise that the NICE 2021 guideline for ME/CFS is available, which details the
- [Confirmed- the conclusion by NICE that CBT is not an effective treatment for ME/CFS](https://www.meresearch.org.uk/confirmed-the-conclusion-by-nice-that-cbt-is-not-an-effective-treatment-for-me-cfs/) - A paper by independent researchers (someone not associated with an academic institution), Mark Vink – also a person with ME/CFS, and Alexandra Vink-Niese, has confirmed the conclusion by NICE that CBT is not an effective treatment for ME/CFS. In the paper, the authors re-examine an existing systematic review – a specific type of study that
- [Hypothalamus connectivity in adolescents](https://www.meresearch.org.uk/hypothalamus-connectivity-in-adolescents/) - Hollie Byrne, Sarah Knight, Elisha Josev and colleagues at Murdoch Children's Research Institute have recently published more findings from their ME Research UK-funded study looking at ME/CFS and associated neurological changes in adolescents. In this new paper, they report changes in connectivity in the hypothalamus, a part of the brain responsible for controlling a wide
- [ME Research UK-funded researcher awarded ZonMw funding](https://www.meresearch.org.uk/me-research-uk-funded-researcher-awarded-zonmw-funding/) - Assistant Professor Rob Wüst of Vrije Universiteit Amsterdam has been awarded a grant from the Netherland's ZonMw for his research project entitled, ‘From sick to sicker with exercise: deciphering the base of post-exertional malaise in post-COVID’. In addition, ZonMw is also funding four additional research projects involving Prof Wüst as a co-applicant. The funding is
- [New project studying muscle microvascular pathology in ME/CFS](https://www.meresearch.org.uk/new-project-studying-muscle-microvascular-pathology-in-me_cfs/) - ME Research UK is delighted to announce that we have awarded funding to Dr Rob Wüst at Vrije Universiteit Amsterdam in the Netherlands for a new study aiming to study microvascular pathology in the muscle and blood of people with ME/CFS. Dr Wüst made waves recently with his research which found multiple abnormalities in muscle
- [Parliamentary Questions on Prevention of Future Deaths Report and ME research discussions](https://www.meresearch.org.uk/parlaimentary-questions-on-prevention-of-future-deaths-report-and-me-research-discussions/) - Dr Ben Spence MP submitted two parliamentary written questions (UIN8473 and UIN8478) to Andrew Gwynne MP Parliamentary Under-Secretary at the Department of Health and Social Care asking about any recent discussions with NIHR over care and treatment of people with ME/CFS (a holding answer was, at first, produced but replaced on 22nd October and ME Research
- [New project tracking brain changes in people with ME/CFS](https://www.meresearch.org.uk/new-project-tracking-brain-changes-in-people-with-me-cfs/) - ME Research UK is delighted to announce that we have awarded funding to Associate Professor Leighton Barnden at Griffith University in Australia for a new study aiming to track changes in the structure and function of the brain over time in people with ME/CFS. Associate Professor Barnden and his team have been particularly active in
- [ME/CFS –"When exercise puts your health at risk"](https://www.meresearch.org.uk/me-cfs-when-exercise-puts-your-health-at-risk/) - Jolien Hendrix – a PhD researcher at the Vrije Universiteit Brussel who is currently working on research supported by ME Research UK, has written a blog post entitled "when exercise puts your health at risk" for ‘Eos Blogs’ – a website where “experts and researchers share their ideas, wonder and points of view on science.”
- [Big Give Christmas Challenge - we have a Charity Champion](https://www.meresearch.org.uk/big-give-christmas-challenge-we-have-a-charity-champion/) - Thanks to our Pledgers who have pledged to match donations made to ME Research UK during this year's Big Give Christmas Challenge (December 3rd – 10th (midday) 2024), The Big Give Trust has offered Charity Champion matched funding of an additional £14,100. This does leave a mighty (Christmas) challenge. To unlock the Champion funds of
- [Breakthrough magazine, Autumn 2024](https://www.meresearch.org.uk/breakthrough-magazine-autumn-2024/) - The Autumn 2024 issue of Breakthrough magazine is now available online. This issue includes a look at two newly funded research projects on microclots and neurocognitive impairment, an article from Cort Johnson on severe ME/CFS, an interview with Tina Katsaros from La Trobe University, and much more. Read it here
- [Christmas cards on sale now](https://www.meresearch.org.uk/christmas-cards-on-sale-now/) - Our new collection of Christmas cards is now available to buy via email, phone, post or our online shop. There are nine designs available this year (with a few others exclusively in the online shop), and with every purchase you will be helping to support our work investing in ME research. We are so grateful
- [UK Parliamentary question on ring-fencing ME/CFS research Funding](https://www.meresearch.org.uk/uk-parliamentary-question-on-ring-fencing-me-cfs-research-funding/) - ME Research UK has long-called for ring-fenced governmental funding for biological research into the causes, consequences and treatment of ME/CFS - and this formed part of our efforts at all levels from the Gibson Report process to responses to the draft Delivery Plan on ME/CFS. As we have stated - What is urgently needed is
- [Fundraising Focus - October 2024](https://www.meresearch.org.uk/fundraising-focus-october-2024/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [ME Research UK - enewsletter October 2024](https://www.meresearch.org.uk/me-research-uk-enewsletter-october-2024/) - ME Research UK explores ME/CFS prevalence Determining the prevalence of ME/CFS is not straightforward – with prevalence figures confounded by differing disease definitions, data collection methods, and even when and where a study was carried out. In a series of articles, ME Research UK has examined exactly what is meant by prevalence, what figures over
- [UK parliamentary questions on research funding for ME/CFS and Long-COVID](https://www.meresearch.org.uk/uk-parliamenary-questions-on-research-funding-for-me-cfs-and-long-covid/) - On 16th October 2024 The Rt Hon John McDonnell MP sought written answers to two questions on ME/CFS and Long-COVID research funding from Andrew Gwynne MP Parliamentary Under-Secretary (Department of Health and Social Care) concerning any assessments of the adequacy of funding allocated to ME/CFS and to Long-COVID research (UIN 9402) and a second on
- [Parliamentary Questions on NICE guideline implementation and NHS care for severe ME](https://www.meresearch.org.uk/parliamentary-questions-on-nice-guideline-implementation-and-nhs-care-for-severe-me/) - Sarah Hodgson MP tabled two parliamentary written questions (UIN 8113 and UIN8114) to Andrew Gwynne MP Parliamentary Under-Secretary at the Department of Health and Social Care questioning implementation of the NICE' guideline 'Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management' (NG206) and on any assessments made of the adequacy of the safety of NHS
- [Vacancy – Donor Relations Officer](https://www.meresearch.org.uk/vacancy-donor-relations-officer-3/) - ME Research UK is a research-focused charity with big ambitions to build upon success, and we are seeking a part-time Donor Relations Officer who can help us grow the supporter base of the charity. If your passion is creating and retaining an engaged, active and loyal supporter base, and you relish the chance of working
- [So, what is an APPG and how do you form one?](https://www.meresearch.org.uk/so-what-is-an-appg-and-how-do-you-form-one/) - Until the UK Parliament was dissolved before the 4th July 2024 general election there was an All-Party Parliamentary Group on ME. With Claire Monaghan MP as its Chair its aims were to '.. improve health, social care, education and employment opportunities for ME sufferers and encourage biomedical research into the cause and treatment of ME.'
- [Founders' Science Writing Award winners](https://www.meresearch.org.uk/founders-science-writing-award-winners/) - ME Research UK is delighted to announce the winners of our first Founders' Science Writing Award, which was on the topic of "The future of ME/CFS research". First prize was awarded to Hollie Watmuff from New York University, while the second prize went to Krista Clarke from the University of Surrey. Both are postdoctoral researchers,
- [Maeve Boothby O'Neill - Coroner issues Preventing Future Deaths Report](https://www.meresearch.org.uk/maeve-boothby-oneill-coroner-issues-preventing-future-deaths-report/) - The assistant coroner who heard evidence on the death of Maeve Boothby O'Neill has (7 Oct 2024) issued a preventing future deaths report – such reports are issued to a person, organisation, local authority or government department or agency where the coroner believes that action should be taken to prevent future deaths. The inquest heard
- [TRPM3 Dysfunction in ME/CFS and the Potential Role of Low-Dose Naltrexone (LDN)](https://www.meresearch.org.uk/trpm3-dysfunction-in-me-cfs-and-the-potential-role-of-low-dose-naltrexone-ldn/) - Transient Receptor Potential Melastatin 3 (TRPM3) is an ion channel that plays a crucial role in regulating movement of certain ions (charged particles) across cell membranes. This ion movement is essential for various physiological processes, such as cell signalling, homeostasis (maintaining a stable internal environment), and responding to external stimuli such as heat. TRPM3 is
- [Blood brain barrier and 'brain fog'](https://www.meresearch.org.uk/blood-brain-barrier-and-brain-fog/) - Cognitive difficulties (sometimes referred to as “brain fog”) are a key symptom of ME/CFS - and one of four required for “suspecting ME/CFS” in the 2021 NICE guidelines alongside fatigue, post exertional malaise and unrefreshing sleep. Brain fog is also experienced by many people with long COVID. In February this year, a team of researchers
- [1st International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID, Lisbon – Highlights (Part 1)](https://www.meresearch.org.uk/1st-international-conference-on-clinical-and-scientific-advances-in-me-cfs-and-long-covid-lisbon-highlights-part-1/) - Key points: ME Research UK attended, virtually, the “1st International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID” which took place in April 2024. In a brief overview of the meeting, 5 key themes which emerged from the speakers talks were identified: History of ME/CFS. Challenges determining prevalence. Biological abnormalities. Disease
- [1st International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID, Lisbon – Highlights (Part 2)](https://www.meresearch.org.uk/1st-international-conference-on-clinical-and-scientific-advances-in-me-cfs-and-long-covid-lisbon-highlights-part-2/) - Key points History of ME/CFS – Dr Susan Levine acknowledged the extensive history of infectious outbreaks associated with ME/CFS, whilst highlighting five well-documented outbreaks: Los Angeles (1934), Akureyri (1948), the Royal Free Hospital (1955), Punta Gorda (1956), and Lake Tahoe (1984). Descriptions of symptoms arising from past infectious outbreaks align with certain core features of
- [Disease heterogeneity among people with ME/CFS](https://www.meresearch.org.uk/disease-heterogeneity-among-people-with-me-cfs/) - Key points How a disease can differ from person to person (disease heterogeneity) is thought to be one of the biggest challenges in ME/CFS research. The current diagnostic process for ME/CFS – and differences in practice between clinicians – may be one explanation for differences in disease characteristics between people with the disease. A paper
- [Severe ME Awareness Day 2023](https://www.meresearch.org.uk/severe-me-awareness-day-2023/) - Background The 8th of August marks Severe ME Awareness Day – a day dedicated to raising awareness for those suffering from severe myalgic encephalomyelitis (ME). This day also serves as a remembrance for those who have lost their lives to this debilitating condition. One such individual is Sophia Mirza, a British artist who passed away
- [The experience of post-exertional malaise – part 1](https://www.meresearch.org.uk/the-experience-of-post-exertional-malaise-part-1/) - Post-exertional malaise (PEM), the cardinal feature of ME/CFS, is profoundly debilitating and often unpredictable, significantly impacting the lives of those affected. Existing definitions of PEM, such as in the NICE 2021 guideline, primarily focus on the worsening of symptoms within a specified timeframe following minimal physical or mental exertion, lasting for days, weeks or longer. However,
- [Shortcomings in the Management of Children and Young people with Suspected Severe ME/CFS](https://www.meresearch.org.uk/shortcomings-in-the-management-of-children-and-young-people-with-suspected-severe-me-cfs/) - Severe ME/CFS is an under-researched area, and even more so in relation to children and young people. Yet it has a profound impact on quality of life, and as described in a 2021 article by Dr Faith Newton – “Very seriously affected children are often too sick for doctor’s office visits, let alone school attendance…
- [Fundraising Focus - September 2024](https://www.meresearch.org.uk/fundraising-focus-september-2024/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [ME Research UK - enewsletter September 2024](https://www.meresearch.org.uk/me-research-uk-enewsletter-september-2024/) - Research funding call 2024 – Huge initial response ME Research UK were delighted to receive 27 proposals in response to our recent call for grant applications, together representing a total of nearly £6 million requested, and covering many different areas of ME/CFS research – including immunology, neurology, post-exertional malaise, biomarkers and viral infections. The proposals
- [La Trobe University's 'Visualise Your Thesis Competition' Winner](https://www.meresearch.org.uk/la-trobe-universitys-visualise-your-thesis-competition-winner/) - When Tina Katsaros started her PhD-level research project, funded by ME Research UK, under Dr Sarah Annesley, she hoped to better understand the cause-and-effect relationships between energy pathway abnormalities in cells from people with ME/CFS. Researchers at every level increasingly look to hone their skills in communicating their research to the public in general. With
- [Benevity Group - latest £1000 Draw](https://www.meresearch.org.uk/benevity-group-latest-1000-draw/) - The latest Benevity nomination round closes midnight Sunday 22nd September 2022. If you've already nominated ME Research UK for £1,000 this year - thank you! Your nomination will automatically be carried forward to 2024's remaining draws If you are still to nominate then it is free, quick and simple - our name is ME research
- [Big Give Christmas Challenge 2024 - Pledge phase ends](https://www.meresearch.org.uk/big-give-christmas-challenge-2024-pledge-phase-ended/) - The Pledge phase of the Big Give Christmas Challenge ended on Sunday 8th September at 5pm. ME Research UK is very grateful to have garnered £14,100 in Pledges which is the most we have ever attracted since we joined the initiative. All monies raised are dedicated to funding research. It means that the first £14,100
- [Call for US RECOVER Initiative to include ME/CFS](https://www.meresearch.org.uk/call-for-us-recover-initiative-to-include-me-cfs/) - RECOVER is a large, United States research programme designed to understand, treat and prevent long COVID, which is marked by long-term symptoms following infection by SARS-CoV-2, the virus that causes COVID-19. The National Institutes of Health Researching COVID to Enhance Recovery (NIH RECOVER) initiative was allocated $1.15 billion, including support through the Rescue Plan Act
- [BH4 upregulation in people with ME/CFS and orthostatic intolerance (OI)](https://www.meresearch.org.uk/bh4-upregulation-in-people-with-me-cfs-and-orthostatic-intolerance-oi/) - At the 16th Invest in ME Research conference, Professor Ron Davis discussed a hypothesis that a molecule known as BH4 could be involved in the pathogenesis of ME/CFS. BH4 – a molecule that is “tightly regulated” in healthy individuals, is thought to be involved in many processes in the body; including the generation of energy
- [ME Research UK - e-newsletter July 2024](https://www.meresearch.org.uk/me-research-uk-e-newsletter-july-2024/) - Research Appreciation Day On July 5th, ME Research UK marked the first annual Research Appreciation Day which celebrates the hard work of health researchers and scientists all around the world. The organisers of Research Appreciation Day 2024 emphasised that "all progress, big or small, comes through research." In line with the theme, we highlighted that ME
- [Disbelief, attitudes, culture and ME/CFS](https://www.meresearch.org.uk/disbelief-attitudes-culture-and-me-cfs/) - Two separate broadcasters, Channel 4 and the BBC, covered the plight of those affected by ME/CFS on 19th and 20th February 2024 respectively with common themes arising - lack of care provision, disbelief, negative attitudes to ME/CFS, and cultural resistance to acceptance of ME/CFS within the 'caring professions'. Channel 4 news featured a 12 min
- [Severe ME Day 2024](https://www.meresearch.org.uk/severe-me-day-2024/) - Background Severe ME Day – 8th August - is a day dedicated to raising awareness for those suffering from severe myalgic encephalomyelitis (ME). This day also serves as a remembrance of those who have lost their lives to this debilitating condition – one such individual being Sophia Mirza, a British artist, who passed away aged
- [ME Research UK - August 2024 e-newsletter](https://www.meresearch.org.uk/me-research-uk-august-2024-e-newsletter/) - Welcome to the August 2024 edition of ME Research UK’s monthly newsletter. This is sent out automatically to all on our mailing list who have opted for e-mail contact. It is simple to sign-up and is free. We rarely exceed one email per month and so ME Research UK will not overload your inbox. Christmas
- [BBC Breakfast features ME/CFS  ](https://www.meresearch.org.uk/bbc-breakfast-features-me-cfs/) - On the 27th of August 2024, BBC Breakfast included a segment on ME/CFS – particularly ME/CFS which is “triggered by long COVID”. Presenters heard from Karen Hargrave who is a person with – and carer to her husband who has – long COVID and ME/CFS, Oonagh Cousins who has long COVID, Dr Binita Kane –
- [Could neurological symptoms of ME/CFS be linked to specific signals in the brain?](https://www.meresearch.org.uk/could-neurological-symptoms-of-me-cfs-be-linked-to-specific-signals-in-the-brain/) - Neurological symptoms – such as pain and cognitive difficulties, are central to ME/CFS, however little is known about the exact mechanisms that cause them. Previous research has considered specific signals in the brain – blood oxygenation level-dependent (BOLD) signals, in people with multiple sclerosis (MS), and those with traumatic brain injuries – conditions which also
- [Big Give Christmas Challenge 2024 - Pledgers need](https://www.meresearch.org.uk/big-give-christmas-challenge-2024-pledgers-need/) - Last year, ME Research UK participated in The Big Give Christmas Challenge and raised over £30,000 of much-needed funds to invest in ME research globally. This year we would like to increase the amount of research we can fund by raising even more through The Big Give. The first step is to ask supporters to
- [Big Give Christmas Challenge - Pledge Target Raised](https://www.meresearch.org.uk/big-give-christmas-challenge-pledge-target-raised/) - Thanks to our wonderful supporters we have been able to raise our Pledge target from £12,500 to £15,000. Initally we had raised the amount from £10,000 to £12,500 but such has been the fantastic response that we have been able to raise the target once more. Pledge are accepted until 11pm Sunday 8 September 2024.
- [Big Give Christmas Challenge 2024 - Pledge Update](https://www.meresearch.org.uk/big-give-christmas-challenge-2024-pledge-update/) - Thanks to our wonderful supporters we have been able to raise our Pledge target to £15,000. Pledge are accepted until 11pm Sunday 8 September 2024. All funds raised via the Big Give Christmas Challenge will be invested in research. Pledge today Last year, ME Research UK raised over £30,000 of much-needed funds to invest in
- [Interview with “Technology Networks” regarding the “current state of ME/CFS research”](https://www.meresearch.org.uk/interview-with-technology-networks-regarding-the-current-state-of-me-cfs-research/) - On the 22nd of August 2024, an article entitled “What’s the current state of ME/CFS research” was published by Technology Networks – a “trusted scientific news publication”. The author of the article – Leo Bear-McGuinness, asked the team at ME Research UK the following questions: What kind of research does ME Research UK fund?
- [Further reflections on the 2024 NASEM definition for “Long COVID” – how does ME/CFS fit in?](https://www.meresearch.org.uk/further-reflections-on-the-2024-nasem-definition-for-long-covid-how-does-me-cfs-fit-in/) - A definition for “long COVID” by the National Academies of Sciences, Engineering, and Medicine (NASEM) Committee on Examining the Working Definition for Long COVID was published in June 2024. Under this long COVID definition, and where a person also meets ME/CFS diagnostic criteria – although the exact criteria to be used are not specified, ME/CFS
- [How Big Give 2023 made a big difference](https://www.meresearch.org.uk/how-big-give-2023-made-a-difference/) - At the close of the Big Give's Christmas Challenge 2023 we had, thanks to our Pledgers, donors and Charity Champion – the Reed Foundation – raised over £30,000. A fantastic total which ME Research UK is both proud of and grateful for. All monies raised were promised to be invested in ME research and we
- [ME Research UK reports on Invest in ME Research Conference 2024](https://www.meresearch.org.uk/me-research-uk-reports-on-invest-in-me-research-conference-2024/) - Overview ME Research UK attended “The 16th Invest in ME Research International ME Conference 2024”, which was held at the Wellcome Genome Campus in Hinxton, Cambridgeshire, on 28th June 2024. The conference featured a variety of presentations and discussions centred on advancing research and clinical trials in ME/CFS. Videos of the presentation are available via
- [Give as You Live Shop online and fundraise for free](https://www.meresearch.org.uk/give-as-you-live-shop-online-and-fundraise-for-free/) - Did you know, when you sign up to Give as you Live the retailers you shop with will make a donation to us for every purchase you make? It is completely free, and the funds help us to continue with our vital work. Sign up today
- [Electrophysiological properties of cells in health and disease](https://www.meresearch.org.uk/electrophysiological-properties-of-cells-in-health-and-disease/) - Dr Krista Clarke is a post-doctoral researcher at the University of Surrey, and is currently working on a research study, co-funded by ME Research UK and the ME Association, assessing the electrical properties of white blood cells in ME/CFS. In this article, Krista talks about her PhD work on the electrophysiological properties of cells, and
- [Fundraising Focus - July 2024](https://www.meresearch.org.uk/fundraising-focus-july-2024/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Winter 2024/2025 Publication announced for ME/CFS Delivery Plan](https://www.meresearch.org.uk/winter-2024-2025-publication-announced-for-me-cfs-delivery-plan/) - Baroness Scott of Needham Market tabled 3 linked questions on 29 July 2024 asking the Dept of Health and Social Care to provide - an update on publication of the cross-Government ME/CFS Delivery Plan (UIN HL452), whether the Delivery Plan will include provision for hospital treatment and full consideration of how to safely prevent malnutrition
- [Socioeconomic status and ME/CFS](https://www.meresearch.org.uk/socioeconomic-status-and-me-cfs/) - Key points Socioeconomic status (SES) indicates economic and social status, and can be measured using characteristics such as household income, area of residence, occupational status, and level of education. Low SES with an increased risk of chronic disease(s) – such as cardiovascular disease, and type 2 diabetes, less is known about how SES impacts the
- [NIH ME/CFS Study Lead shifts research focus from ME/CFS to Long COVID](https://www.meresearch.org.uk/nih-me-cfs-study-lead-shifts-research-focus-from-me-cfs-to-long-covid/) - The recent National Institutes of Health (NIH) ME/CFS Deep Phenotyping Study was not intended as a standalone project, but as the first phase of a three-part NIH initiative to investigate post-infectious ME/CFS. Whilst the first phase had its shortcomings, it also yielded numerous significant findings that could have been further explored. However, the study's principal
- [Reflections from the Unite to Fight Conference 2024](https://www.meresearch.org.uk/reflections-from-the-unite-to-fight-conference-2024/) - On the 15th and 16th of May this year, ME Research UK attended the first Unite To Fight conference – “The biggest community-driven ME/CFS and Long COVID conference ever”, which was held online. Organised by those with ME/CFS, and those with long COVID, the crowd-funded conference included over 40 speakers who provided “a special mix
- [Pathogen Reactiviation - Dr Amy Proal discusses](https://www.meresearch.org.uk/pathogen-reactiviation-dr-amy-proal-discusses/) - Alongside Dr. Raven Baxter and Dr. David Putrino, Dr Amy Proal – who is currently working on a project identifying viruses in tissue and nerve samples from ME/CFS patients funded by ME Research UK, recently took part in a “CoRE Knowledge Session” on pathogen reactivation. In this online discussion – hosted by the Cohen Center
- [Founders' Science Writing Award 2024: "The Future of ME/CFS Research"](https://www.meresearch.org.uk/writing-award-2024/) - Edit: The deadline for the 2024 competition has now passed and we are no longer accepting any more submissions. ME Research UK is delighted to announce the launch of the Founders’ Science Writing Award – a competition giving early career researchers the opportunity to develop skills in communicating science in a way that is accessible and
- [M.E. Sufferers Bill - UK Parliament 1988](https://www.meresearch.org.uk/m-e-sufferers-bill-uk-parliament-1988/) - On 23 February 1988, Jimmy Hood MP addressed the House of Commons to ask MPs "That leave be given to bring in a Bill to require an annual report to Parliament on progress made in investigating the causes, effects and treatment of myalgic encephalomyelitis." Bill 99 was given a first reading as a Private Member's
- [Hints of Progress on publishing ME/CFS Delivery Plan?](https://www.meresearch.org.uk/hints-of-progress-on-publishing-me-cfs-delivery-plan/) - When MP Dr Rupa Huq tabled her Written Question to "To ask the Secretary of State for Health and Social Care, what steps he plans to take to improve support for people with myalgic encephalomyelitis" a potentially revealing reponse was received. Integrated care boards (ICBs) are responsible for commissioning specialist myalgic encephalomyelitis, also known as
- [Medscape UK publishes article 'Long COVID & ME/CFS: The Similarities are Uncanny'](https://www.meresearch.org.uk/medscape-uk-publishes-article-long-covid-chronic-fatigue-the-similarities-are-uncanny/) - Medscape UK has provided a useful lay overview of research into ME/CFS and the article provides a structure which shows the important role of ME Research UK in all highlighted ME/CFS research areas. The article focussed on a number of key research issues - with ME Research UK heavily involved in all. Viral Reactivation - in
- [Do ICD codes alone accurately diagnose ME/CFS?](https://www.meresearch.org.uk/do-icd-codes-alone-accurately-diagnose-me-cfs/) - Do diagnostic codes used in medical records – such International Statistical Classification of Diseases and Related Health Problems (ICD) codes, accurately identify people with ME/CFS? Results from a study using information from medical records in the USA suggest not, with the authors concluding in their paper that: “Using ICD diagnosis codes alone inaccurately estimates ME/CFS
- [USA Brain Donation for ME/CFS research](https://www.meresearch.org.uk/usa-brain-donation-for-me-cfs-research/) - It would appear that US residents are able to donate their brain tissue for ME/CFS research. During the Q & A session after an ME/CFS Roadmap presentation, an National Advisory Neurological Disorders and Stroke Council member mentioned the need for brain and spinal cord tissues to allow for studies into “transposable elements. endogenous retroviruses and
- [How does ME Research UK decide which research projects to fund?](https://www.meresearch.org.uk/how-does-me-research-uk-decide-which-research-projects-to-fund/) - The principal aim of ME Research UK is to commission and fund high-quality scientific (biomedical) investigation into the causes, consequences and treatment of ME/CFS. Therefore, it is essential that all funding applications submitted to the charity undergo a rigorous review process. Within this, the science, research methodology, and cost of proposed projects are considered in detail, alongside
- [Call for grant applications](https://www.meresearch.org.uk/call-for-grant-applications/) - ME Research UK is pleased to an announce an open call for applications from researchers wishing to investigate the causes, consequences and treatment of ME/CFS. Funding is available to support scientifically robust biomedical studies at appropriate host institutions worldwide. Please note that we also welcome applications for PhD-level research funding at this time – there
- [Research Appreciation Day 2024](https://www.meresearch.org.uk/research-appreciation-day-2024/) - Today (5th July) marks the first annual Research Appreciation Day which celebrates the hard work of health researchers and scientists all around the world. ME Research UK would like to use this opportunity to thank the scientists carrying out biomedical research into the causes, consequences, and treatments for ME/CFS, those with lived experiences of ME/CFS
- [Fundraising Focus - June 2024](https://www.meresearch.org.uk/fundraising-focus-june-2024/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [ME Research UK — June 2024 e-newsletter](https://www.meresearch.org.uk/me-research-uk-june-2024-e-newsletter/) - Welcome to the June 2024 edition of ME Research UK’s monthly newsletter. New ME Research UK-funded projects This month, ME Research UK is delighted to announce the funding of two new research projects. Prof. François Jérôme Authier and colleagues will assess neurocognitive impairment in people with ME/CFS. Dr Rob Wüst aims to identify microclots in
- [An overview of ME/CFS](https://www.meresearch.org.uk/an-overview-of-me-cfs/) - An extensive review on ME/CFS from a multidisciplinary team, including researchers and clinicians, has recently been published. The paper focuses on “describing ME/CFS in terms of symptoms, severity and burden, diagnostic criteria, causes and triggers; followed by an overview of the complex pathophysiology and management of the condition.” Key points related to diagnosis, causes and
- [ME Research UK - April 2024 e-newsletter](https://www.meresearch.org.uk/me-research-uk-april-2024-e-newsletter/) - Welcome to the April 2024 edition of ME Research UK’s monthly newsletter. Breakthrough magazine available now The Spring 2024 issue of Breakthrough magazine is now available online. This issue includes a look at two newly funded research projects on nanoelectronics and visual sensory processing, an article from Cort Johnson on the UK scientists currently making
- [Project update – characterising the electrical properties of white blood cells](https://www.meresearch.org.uk/project-update-characterising-the-electrical-properties-of-white-blood-cells/) - In a project jointly funded by ME Research UK and the ME Association, Prof. Robert Dorey and colleagues at the University of Surrey and London School of Hygiene and Tropical Medicine are currently investigating the electrical properties of blood from people with ME/CFS. The day-to-day running of the project is being carried out by Dr
- [US National Academies of Sciences, Engineering, and Medicine issues Long COVID definition](https://www.meresearch.org.uk/us-national-academies-of-sciences-engineering-and-medicine-issues-long-covid-definition/) - On 11th June 2024, the US's National Academies of Sciences, Engineering, and Medicine released a report urging federal, state and local authorities, educators, insurance companies, employers, benefit agencies healthcare professionals, and researchers to adopt adopt a new definition of Long COVID (LC). According to the 2024 NASEM definition of long COVID the illness "...... is
- [Australian MRFF awards Long COVID grant](https://www.meresearch.org.uk/australian-mrff-awards-long-covid-grant/) - Australia has awarded the first Medical Research Future Fund (MRFF) grants aimed at improving the lives of people with long Covid. AUS$50million has been committed by the federal government aiming to uncover better evidence on the effective management of long COVID in the Australian community. The initial 12 grants from the Fund have now been
- [Severe ME in Denmark](https://www.meresearch.org.uk/severe-me-in-denmark/) - In a study aiming to describe the medical and social conditions of the most severely ill patients with ME in Denmark, the researcher narrated the experiences of nineteen participants [17 women and two men (average age was 34 years, and age ranged from 26 to 49 years), severely ill for 9.8 years on average and diagnosed using the
- [Project update from Dr Proal](https://www.meresearch.org.uk/project-update-from-dr-proal/) - Dr Amy Proal from PolyBio Research Foundation recently updated us on the progress of her project searching for viruses in tissue and nerve samples from people with ME/CFS. This project was funded by ME Research UK with the financial support of the Gordon Parish Charitable Trust. The viruses most associated with ME/CFS (including polio-type enteroviruses
- [Small Fibre Neuropathy (SFN) and ME/CFS](https://www.meresearch.org.uk/small-fibre-neuropathy-sfn-and-me-cfs/) - Small fibre neuropathy (SFN) is a condition that affects small nerve fibres throughout the body, leading to various sensory symptoms such as pain, “pins and needles” and burning sensation, and autonomic symptoms such as palpitations, gastrointestinal problems, and excessive sweating. Several studies discuss the association of ME/CFS with SFN, and many individuals with ME/CFS report
- [European ME Alliance report - 'A Shocking Indictment of European Research and Healthcare Policies for Myalgic Encephalomyelitis'](https://www.meresearch.org.uk/european-me-alliance-report-a-shocking-indictment-of-european-research-and-healthcare-policies-for-myalgic-encephalomyelitis/) - The European ME Alliance (EMEA) has produced a lengthy and retailed report based on the online responses of over 11,000 individuals from across Europe (and beyond - in total 44 countries had respondees) and "stands as a first attempt by patient organisations to bring forward information that can be applied by governments in Europe, and
- [NINDS - Advancing Research on ME/CFS](https://www.meresearch.org.uk/ninds-advancing-research-on-me-cfs/) - On 3rd June 2024, Walter J. Koroshetz, M.D issued a Director's message on 'Advancing Research on ME/CFS'. Dr Koroshetz is the Director of the National Institute of Neurological Disorders and Stroke (NINDS) - one of the 27 Institutes and Centres which are tthe constituent elements of the USA's National Institutes of Health (NIH). ME/CFS research
- [ME Research UK - May 2024 e-newsletter](https://www.meresearch.org.uk/me-research-uk-may-2024-e-newsletter/) - Welcome to the May 2024 edition of ME Research UK’s monthly newsletter. International ME Awareness Day 12th May was International ME Awareness Day 2024. On this important day, organisations and individuals raised awareness about the debilitating nature of ME/CFS and other chronic immunological and neurologic diseases. Inverclyde marked the day with a number of local
- [Fundraising Focus - May 2024](https://www.meresearch.org.uk/fundraising-focus-may-2024/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Brief Overview of 1st International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID - Lisbon, April 2024](https://www.meresearch.org.uk/brief-overview-of-1st-international-conference-on-clinical-and-scientific-advances-in-me-cfs-and-long-covid-lisbon-april-2024/) - Last week, ME Research UK attended, virtually, the “1st International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID” held in Portugal. The conference spanned two days and featured talks by established ME/CFS researchers (several of whom have previously received funding from ME Research UK), as well as discussions with early career researchers.
- [New study assessing neurocognitive impairment in ME/CFS](https://www.meresearch.org.uk/new-study-assessing-neurocognitive-impairment-in-me-cfs/) - ME Research UK is delighted to announce that we have awarded funding to Prof. François Jérôme Authier and colleagues for a new study assessing neurocognitive impairment in people with ME/CFS. Cognitive problems are one of the most frequent and disabling symptoms associated with ME/CFS, and most people with the disease report memory and concentration difficulties.
- [Young scientist joins the fight against ME](https://www.meresearch.org.uk/young-scientist-joins-the-fight-against-me/) - From the University of the Sunshine Coast in Australia: A young researcher, Kiana Kothe, has embarked on an exciting PhD journey in neuroimmunology, funded by ME Research UK. Originally from Frankfurt, Kiana holds a BSc in Psychology and MSc in Cognitive and Clinical Neuroscience from Maastricht University in the Netherlands. Under the supervision of Dr Shan, Kiana will
- [Blue Sunday - The Tea Party for M.E. - thank you](https://www.meresearch.org.uk/blue-sunday-the-tea-party-for-m-e-thank-you/) - A heartfelt thank you to Anna Redshaw for organising Blue Sunday – “The Tea Party for M.E.” and to everyone who donated to or fundraised on behalf of ME Research UK. Additionally, a big thank you to Isaac for organising and hosting “Blue Sunday - Tea Party for ME - The Concert” in aid of
- [UK ME/CFS 'Researcher toolkit' launched](https://www.meresearch.org.uk/uk-me-cfs-researcher-toolkit-launched/) - As part of the work surrounding the Department for Health and Social Care's Delivery Plan process, a 'researcher toolkit' has been produced which illustrates funding streams available for ME/CFS research, guides re Public and Patient Involvement (PPi), and advice on drafting a successful research application. The toolkit carries the endorsement of the UK Clinical Research
- [Recognition of International ME Awareness Day 2024](https://www.meresearch.org.uk/recognistion-of-international-me-awareness-day-2024/) - The first International ME Awareness Day was marked in 1992 and, since then, International ME Awareness Day has become the focal point for many awareness raising, lobbying, and other M.E. initiatives globally. The latest moves to mark 12th May* have come from state legislatures in the US - California and New York. In particular, New
- [The Netherlands launch ME/CFS Brain Bank](https://www.meresearch.org.uk/the-netherlands-launch-me-cfs-brain-bank/) - As part of the ZonMW initiative which implements a direction to fund a 28.5 million euros 10-year programme of biomedical research programmes on ME/CFS, the Netherlands ME/CFS Cohort and Biobank consortium (NMCB) has begun. In this consortium, six projects will focus on biomedical research into ME/CFS with one, now announced, being the Netherlands Brain Bank
- [UK Parliamentary Answer confirms Delivery Plan timetable](https://www.meresearch.org.uk/uk-parliamentary-answer-confirms-delivery-plan-timetable/) - Daisy Cooper MP's Written Question to the Department of Health and Social Care has illicited a response which confirms the intended (vague) timeline for publication of the final Delivery Plan on ME/CFS. To ask the Secretary of State for Health and Social Care, what progress her Department has made on the Interim Delivery Plan for
- [Steroid hormone changes in ME/CFS](https://www.meresearch.org.uk/steroid-hormone-changes-in-me-cfs/) - Hormones are signalling molecules that are essential in regulating many different processes throughout the body. There are several types, including steroid hormones: corticosteroids (such as glucocorticoids and mineralocorticoids) and sex steroids (such as androgens, oestrogens and progestins). Previous research has reported differences in steroid hormone levels between people with ME/CFS and healthy control subjects, but
- [What makes ME/CFS so debilitating?](https://www.meresearch.org.uk/what-makes-me-cfs-so-debilitating/) - For ME Awareness Week 2024, we shared infographics summarising some of the major symptoms of ME/CFS. You can find these collected here. Whilst the fatigue in ME/CFS is debilitating, there is far more to ME/CFS than just this symptom. Fatigue is accompanied by cognitive dysfunction, sleep dysfunction, and post-exertional malaise (PEM). Beyond these core symptoms,
- [ME Awareness Week 2024](https://www.meresearch.org.uk/me-awareness-week-2024/) - For ME Awareness Week, we asked some of our researchers what they'd like people to know about their own research. Here's what they said: Read more about their projects:
- [Report of the ME/CFS Research Roadmap Working Group of Council - May 2024](https://www.meresearch.org.uk/report-of-the-me-cfs-research-roadmap-working-group-of-council-may-2024/) - Arising from a 2019 Report of the NANDS Council Working Group for ME/CFS Research (NANDS - the National Advisory Neurological Disorders and Stroke) NANDS announced (in 2022) the development of a Research Roadmap process for ME/CFS, to identify research priorities centred on moving ME/CFS research towards translational studies and clinical trials. The finalised Roadmap was
- [Blue Sunday 2024 and Concert](https://www.meresearch.org.uk/blue-sunday-2024-and-concert/) - Anna Redshaw’s ‘Blue Sunday’ Tea Party For M.E. in aid of various ME charities (including ME Research UK) will be held on Sunday 19th May 2024. Since its launch in 2013, the initiative has raised over £100,000 for charities. The premise is simple. Wear something blue (pyjamas count!) Dig out your best cups and saucers
- [International ME Awareness Day 2024 - Inverclyde marks the day](https://www.meresearch.org.uk/international-me-awareness-day-2024-inverclyde-marks-the-day/) - Inverclyde marked International ME Awareness Day 2024 with a number of local features turning blue for 12th May. 12th May is International ME Awareness Day when organisations and individuals recognise and support the millions of people world-wide who are affected by ME/CFS and other chronic immunological and neurologic diseases. In 2022 Perth was bathed in
- [Delivery Plan Publication Update](https://www.meresearch.org.uk/delivery-plan-update/) - At a meeting of the ME/CFS Delivery Plan Research Workgroup today, the following update was authorised for realease - Lee McGill (DHSC) joined the Research Working Group today to share an update on the Delivery Plan. We were pleased to hear there has been considerable work happening in the background to process the extremely high
- [Research shows that ME/CFS is a biological illness  –  so why do some people still think it is psychological in nature?](https://www.meresearch.org.uk/biological-abnormalities/) - Although research has shown that people with ME/CFS have biological abnormalities that are associated with disease severity and symptoms, and most researchers consider ME/CFS as a biological disease, there is still a misconception amongst many people – worryingly, including health professionals – that the disease is psychological in nature (psychosomatic) rather than biological. A recent article by
- [Funding & the Westminster Hall Debate](https://www.meresearch.org.uk/funding-the-westminster-hall-debate/) - "This group believes that the MRC should be more open-minded in their evaluation of proposals for biomedical research into CFS/ME and that, in order to overcome the perception of bias in their decisions, they [the MRC] should assign at least an equivalent amount of funding (£11 million) to biomedical research as they have done to
- [Research Workshops - attendance invitation](https://www.meresearch.org.uk/research-workshops-attendance-invitation/) - As part of the DHSC Delivery Plan process a research working group was established and a number of workshops have been planned which aim to stimulate clinical research into ME/CFS, to raise the profile of ME/CFS clinical research, increase collaboration, attract new researchers and formulate research priorities in areas of unmet need. The workshops have
- [UK Parliamentary Question on ME/CFS funding](https://www.meresearch.org.uk/uk-parliamentary-question-on-me-cfs-funding-2/) - Inadequate funding of ME/CFS biomedical reseach has been an issue for decades and recognised as such by researchers, parliamentarians, people with ME, and by charites. Reports and parliamentary debates (for example, at Westminster, Hollyrood, and at the European Parliament) have called for levels of funding to be increased to reflect both prevalence and impact of
- [Vacancy – Donor Relations Officer](https://www.meresearch.org.uk/vacancy-donor-relations-officer-2/) - ME Research UK is a research-focused charity with big ambitions to build upon success, and we are seeking a part-time Donor Relations Officer who can help us grow the supporter base of the charity. If your passion is creating and retaining an engaged, active and loyal supporter base, and you relish the chance of working
- [Griffith University ME/CFS and long COVID conference](https://www.meresearch.org.uk/griffith-university-me-cfs-and-long-covid-conference/) - In November last year, the National Centre for Neuroimmunology and Emerging Diseases at Griffith University in Australia hosted the third ME/CFS and long COVID International Conference. The conference featured presentations from a host of eminent scientist, including ME Research UK-funded researchers, Dr Leighton Barnden and Dr Kiran Thapaliya. Videos of the presentations are now available
- [Research participants wanted](https://www.meresearch.org.uk/research-participants-wanted/) - Dr Doug Barrett and Anosha Altaf from the University of Leicester are looking for participants for their ME Research UK-funded study on visual sensory processing and selective attention in ME/CFS. Specifically, they need people with ME/CFS over the age of 18, with normal or corrected-to-normal vision, and no other known neurological disorders. If you would
- [Herpesviruses, Endothelial Dysfunction, and ME/CFS](https://www.meresearch.org.uk/herpesviruses-endothelial-dysfunction-and-me-cfs/) - Overview The endothelium, a single layer of epithelial cells, lines the inside of blood vessels and plays a crucial role in various processes such as blood flow control and clotting. Endothelial dysfunction, i.e. impaired function of the endothelium, has been demonstrated both in long COVID and ME/CFS, however there is speculation as to the causes.
- [New project on the impact of ME/CFS on visual sensory processing and selective attention](https://www.meresearch.org.uk/new-project-on-the-impact-of-me-cfs-on-visual-sensory-processing-and-selective-attention/) - ME Research UK is delighted to announce that we have awarded funding to Dr Douglas Barrett at Leicester University for new PhD-level research exploring visual problems in ME/CFS.
- [Fundraising Focus - April 2024](https://www.meresearch.org.uk/fundraising-focus-april-2024/) - The team at ME Research UK is very grateful for all the support which the charity receives from its active fundraisers. At the best of times fundraising can seem a daunting prospect but without your support we could not continue to inform, influence or invest in ME research globally. Our current projects simply would not
- [Westminster Hall debate on ME - 1st May 2024](https://www.meresearch.org.uk/westminster-hall-debate-on-me-1st-may-2024/) - Westminster Hall debates are held not in the chamber of the House of Commons but elsewhere in the Palace of Westminster and provide the opportunity to debate any issue, ranging from major constitutional questions to areas of particular interest to MPs and their constituents, outside the Parliamentary calendar set by the Government. There is no
- [Breakthrough Spring 2024](https://www.meresearch.org.uk/breakthrough-spring-2024/) - The Spring 2024 issue of Breakthrough magazine is now available online. Download a pdf or read it online. This issue includes a look at two newly funded research projects on nanoelectronics and visual sensory processing, an article from Cort Johnson on the UK scientists currently making waves in ME/CFS research, an interview with Gemma Samms from the University
- [When will ME/CFS Delivery Plan be published?](https://www.meresearch.org.uk/when-will-me-cfs-delivery-plan-be-published/) - Almost 2 years have passed since, on International ME Awareness Day 2022, the Rt Hon Secretary of State for Health and Social Care (Sajid Javid) issued a written statement on ME/CFS. Two initiatives were announced which the Secretary of State pledged showed the Government’s commitment ‘to better care and support for people living with ME/CFS
- [Epistemic Injustice among People with ME/CFS](https://www.meresearch.org.uk/epistemic-injustice-among-people-with-me-cfs/) - On the 17th of April, a study exploring the experiences of epistemic injustice in a healthcare setting among people with ME/CFS was published. Epistemic injustice is harm done to a person which is related to their own knowledge or personal experience. It is said to be a concept closely related to stigma – sadly, something
- [US Congress's Long COVID Moonshot Legislative Proposal](https://www.meresearch.org.uk/us-congresss-long-covid-moonshot-legislative-proposal/) - In advance of tabling a legistative proposal to Congress, Sen. Bernie Sanders, Chair of the Senate Health, Education, Labor, and Pensions (HELP) Committee has asked the Long COVID community (including Long COVID patients and their families, scientific researchers, and medical professionals) to submit their views on how proposals for research funding and infrastructure can be

## Pages

- [Current projects](https://www.meresearch.org.uk/research/current-projects/) - Project grants PhD-level projects Fellowships
- [Make a regular donation](https://www.meresearch.org.uk/support-us/regular-donations/) - Research Behind the Numbers New research, funded by ME Research UK, suggests that over 400,000 people in the UK alone live with ME/CFS — a staggering 60% rise from previous estimates. Only with your support can we continue our work to inform, influence, and invest in vital biomedical research into ME/CFS. By choosing to give
- [Gift Aid explained](https://www.meresearch.org.uk/support-us/gift-aid-explained/) - Gift Aid is one of the simplest and most effective ways of increasing your donation to ME Research UK – without costing you a penny more. It is a scheme which allows us to claim 25p for every £1 that you donate – as long as you pay at least that amount in tax and give us permission. How
- [Give shares or securities](https://www.meresearch.org.uk/shares-or-securities/) - Donating shares or securities to ME Research UK is not only a wonderful way to help our cause, but it could also be a shrewd financial decision. Since April 2000, it is one of the most tax efficient ways to give as no Capital Gains Tax is payable on the shares you donate and you
- [Make a donation online](https://www.meresearch.org.uk/support-us/online-donation/) - Support ME Research UK Online ME/CFS is a complex physical disease that affects many parts of the body. Helen Morgan, MP, described the disease as “the sickest lie in darkened rooms, sometimes unable to move, speak, or even swallow. Those living with the most extreme forms of ME describe it not as a life but
- [Make a donation](https://www.meresearch.org.uk/support-us/make-a-donation/) - If you would like to help ME Research UK by providing financial support for our important work, there are a number of options. Gift Aid allows us to claim the tax back on your donation without costing you a penny more, and you can find out more about Gift Aid here. Online donation Regular donations
- [Payroll giving](https://www.meresearch.org.uk/payroll-giving/) - If your workplace has a Payroll Giving scheme and you are taxed through PAYE, you can donate to ME Research UK directly from your wages, and it’s tax-free! Payroll Giving is also possible for people in receipt of an employment pension who are taxed using PAYE. Example: If you are a basic rate taxpayer (20%)
- [Donate by phone or post](https://www.meresearch.org.uk/phone-post-donation/) - 📞 By Phone If you would like to make a donation by credit or debit card over the telephone, we gratefully accept debit cards as well as Visa and Mastercard. Opening times: 9:00 am – 4:30 pm, Monday to Friday 01738 451234 ✉️ By Post You can make a donation by credit/debit card or cheque
- [Sponsored Events](https://www.meresearch.org.uk/support-us/sponsored-events/) - Sponsored events are a popular and fun way to raise funds for ME Research UK. If you’re planning a sponsored event, we’ve created a sponsorship form for you to print and use. This form also doubles as a Gift Aid declaration, helping to increase the total amount you raise. ❗ Important: Please return the completed
- [Fundraising ideas](https://www.meresearch.org.uk/support-us/fundraising-ideas/) - Every fundraiser — big or small — helps us move forward to make a meaningful change for people living with ME/CFS. Whether you want something creative, fun, or simple to run, here are plenty of ideas to spark your next fundraising moment. ☕ Tea for ME Host a tea party for friends, family, or colleagues.
- [Tea for ME](https://www.meresearch.org.uk/support-us/tea-for-me/) - We are famously a nation of tea drinkers, so why not have a ‘Tea for ME’ to help us raise funds and awareness of ME too? Bake a cake, cut the crusts off a loaf and dust off that never used china tea set. As you serve up a morning of good conversation, your friends
- [Recycle 4 Charity](https://www.meresearch.org.uk/support-us/recycle-4-charity/) - Did you know that 45 million inkjet cartridges end up in landfill each year in the UK? Many can be recycled, generating a donation for ME Research UK — and it couldn’t be easier! Protect the environment and support our research at the same time. Recycle4Charity supplies a freepost label so there’s no cost to you. Just visit their
- [Shopping Online](https://www.meresearch.org.uk/support-us/shopping-online/) - There are currently six ways to help raise funds for ME Research UK while shopping or browsing online. 4. Everyclick You can help us by using search engine Everyclick.com, which gives money to ME Research UK every time you search the web. It's a simple way to raise vital funds, and it won't cost you or
- [Accountability](https://www.meresearch.org.uk/support-us/fundraising-complaints/) - ME Research UK is committed to best practice in fundraising. As a Scottish Charitable Incorporated Organisation, we are regulated by the Office of the Scottish Charity Regulator (OSCR) and by the Scottish Fundraising Adjudication Panel (SFAP). We want to ensure that if any donor or potential donor has concerns about our fundraising activities, they can
- [About us](https://www.meresearch.org.uk/about-us/) - The principal aim of ME Research UK is to commission and fund high-quality scientific (biomedical) investigation into the causes, consequences and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (also known as ME/CFS). ME Research UK-funded research suggests that in excess of 400,000 people in the UK have ME/CFS yet this debilitating disease is neither well understood
- [Breakthrough magazine](https://www.meresearch.org.uk/research/breakthrough-magazine/) - ME Research UK publishes its own magazine, Breakthrough, featuring updates on projects funded by the charity, recent research from around the world, information about our supporters' fundraising activities, and other articles on ME/CFS issues. Read or download the latest issue of Breakthrough below, and click here to read our Terms and Conditions relating to the magazine. To subscribe
- [Research grants](https://www.meresearch.org.uk/research/research-grants/) - ME Research UK is not currently accepting new applications for our research grants. ME Research UK is pleased to announce an open call for applications for PhD-level research funding, and we welcome proposals from researchers wishing to investigate the causes, consequences and treatment of ME/CFS. Funding is available to support scientifically robust biomedical studies at
- [Sign up for updates or change contact preferences](https://www.meresearch.org.uk/sign-up/) - Please complete the following form if you would like to keep in touch with ME Research UK and/or receive copies of Breakthrough magazine, which features updates on projects funded by the charity, other recent research, fundraising news, and much more. Please click here if you would like to unsubscribe from our mailing list. Please contact us if you would
- [Genetics and the Biobank](https://www.meresearch.org.uk/research/genetics/)
- [How do alterations in the COMT gene affect inflammation in ME/CFS and fibromyalgia?](https://www.meresearch.org.uk/research/alterations-in-comt-gene/) - Principal investigator Prof. Jo NijsVrije Universiteit Brussel, Brussels, Belgium About the study The aim of this study was to understand better the disease processes underlying the development of ME/CFS and fibromyalgia. The researchers were interested specifically in a protein called catechol-O-methyltransferase (COMT) which is known to have effects on pain and inflammation, both of which
- [Other resources](https://www.meresearch.org.uk/research/other-resources/) - Guides to ME/CFS diagnostic criteria NICE 2021 Criteria Canadian Consensus Criteria (CCC) International Consensus Criteria (ICC) IOM 2015 Criteria Fukuda Criteria Ramsay Definition Holmes Definition Nightingale Definition Dialogues for a Neglected Illness Essays and commentaries Talks and presentations Policy issues Other publications
- [Support us](https://www.meresearch.org.uk/support-us/) - Your support, big or small, has the potential to deliver hope through research for all affected by ME/CFS. Our supporters have been helping shape the ME/CFS research landscape since 2000. Donations from people like you have helped us to tackle the chronic underinvestment in ME/CFS understanding, and to attract and retain ME/CFS researchers to develop
- [Immune system and infection](https://www.meresearch.org.uk/research/immune-system/) - More information To learn more about the immune system and other ME/CFS research in this area, have a look at the following articles written by members of our team. In the balance. An introduction to the immune system Immune-system research in ME/CFS part 1 Immune-system research in ME/CFS part 2
- [Organising an event](https://www.meresearch.org.uk/support-us/organising-an-event/) - There are so many ways you can help raise funds for ME Research UK – from organising a coffee morning to running a marathon! Please have a look at the recent activities on our Facebook page for ideas or visit Justgiving to see what other supporters are doing to help our cause. For more information, advice and ideas, you
- [Diagnosis and symptoms](https://www.meresearch.org.uk/research/diagnosis-and-symptoms/)
- [Muscle function and metabolism](https://www.meresearch.org.uk/research/muscle-function/) - More information To learn more about the mitochondria, energy production and other ME/CFS research in this area, have a look at the following article written by members of our team. Wiped out. Energy and the mitochondria in ME/CFS
- [Brain and nervous system](https://www.meresearch.org.uk/research/nervous-system/) - More information To learn more about the brain, cognitive function and other ME/CFS research in these areas, have a look at the following articles written by members of our team. All in your head? An introduction to the brain Brain research in ME/CFS Brain research funded by ME Research UK Brain fog. Part 1: An
- [Cause-effect relationships in the mitochondrial energy inefficiency in ME/CFS](https://www.meresearch.org.uk/research/cause-effect-relationships/) - Principal investigator Dr Sarah Annesley PhD student Tina Katsaros Institution La Trobe University, Melbourne, Australia Start date November 2022 Funding ME Research UK Background Dr Annesley is a scientist at La Trobe University in Melbourne, Australia, whose research is focused on the mitochondria, the so-called power plants of the body. These structures are found in every
- [Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols](https://www.meresearch.org.uk/research/other-resources/working-case-definition/) - Authors Carruthers et al Reference Journal of Chronic Fatigue Syndrome 2003; 11: 7–115 Summary Recent years have brought growing recognition of the need for clinical criteria for myalgic encephalomyelitis (ME), which is also called chronic fatigue syndrome (CFS). An Expert Subcommittee of Health Canada established the Terms of Reference, and selected an Expert Medical Consensus Panel
- [Terms and conditions](https://www.meresearch.org.uk/terms-and-conditions/) - A) Definitions In the context of these terms and conditions: ‘ME Research UK’ is a Scottish Charitable Incorporated Organisation (no. SC036942) with an office at The Gateway, North Methven Street, Perth PH1 5PP, Scotland, UK ‘The website’ refers to any website under the control or ownership of ME Research UK from which a link has
- [Research funding FAQs](https://www.meresearch.org.uk/research/faqs/) - Please see our Standard Grant Conditions for full details of these and other conditions relating to ME Research UK grant funding, and contact david@meresearch.org.uk if you have any queries that are not answered here. Our grant application and review process is outlined here, but you should consult our research grants page for detailed instructions relating
- [Tracking peripheral immune cell infiltration of the brain in ME](https://www.meresearch.org.uk/research/immune-cell-infiltration/) - Principal Investigator Prof. Jarred Younger Institution University of Alabama at Birmingham, Birmingham, Alabama, USA Start date June 2018 Background and aim Many of the characteristic symptoms of ME/CFS suggest that the immune system is activated in the brains of people with the illness, leading to the release of inflammatory chemicals. This neuroinflammation is known to
- [Meet the team](https://www.meresearch.org.uk/meet-the-team/) - Mr Roger Jefcoate CBE DL, Founding Patron Central to the founding of the charity, Roger gives nationwide help to severely disabled people who need adapted computers for educational needs or community work. He is also co-founder of the National Association of Toy and Leisure Libraries, and Canine Partners, and founder of the AIDIS Trust, the
- [Heart and circulation](https://www.meresearch.org.uk/research/heart-and-circulation/)
- [Other publications](https://www.meresearch.org.uk/research/other-resources/other-publications/) - Research publications on ME epidemics — relating to 47 epidemics of ME (appearing under various names) from 1934 to 1980, collected by Dr J Gordon Parish A Review of ‘The clinical syndrome variously called benign myalgic encephalomyelitis, Iceland disease and epidemic neuromyasthenia’. An essay by Dr J Gordon Parish Myalgic Encephalomyelitis: Guidelines for Doctors. A review
- [Peripheral cholinergic function in humans with chronic fatigue syndrome, Gulf War syndrome and with illness following organophosphate exposure](https://www.meresearch.org.uk/research/peripheral-cholinergic-function/) - Authors Khan F, Kennedy G, Spence VA, Newton DJ, Belch JJF Institution Vascular Diseases Research Unit, The Institute of Cardiovascular Research, Ninewells Hospital and Medical School, Dundee, UK Background In the present study, we have investigated whether the peripheral cholinergic abnormalities that we have reported previously (Spence et al, Am J Med 2000; 108: 736–9) in
- [Prolonged acetylcholine-induced vasodilatation in the peripheral microcirculation of patients with chronic fatigue syndrome](https://www.meresearch.org.uk/research/acetylcholine-induced-vasodilatation/) - Authors Khan F, Spence VA, Kennedy G, Belch JJF Institution Vascular Diseases Research Unit, The Institute of Cardiovascular Research, Ninewells Hospital and Medical School, Dundee, UK Background Although the aetiology of chronic fatigue syndrome (CFS) is unknown, there have been a number of reports of blood flow abnormalities within the cerebral circulation and systemic blood pressure
- [Acetylcholine mediated vasodilatation in the microcirculation of patients with chronic fatigue syndrome](https://www.meresearch.org.uk/research/ach-review/) - Authors Spence VA, Khan F, Kennedy G, Abbot NC, Belch JJF Institution Vascular Diseases Research Unit, The Institute of Cardiovascular Research, Ninewells Hospital and Medical School, Dundee, UK Support Studies reported here were funded by ME Research UK. Laser Doppler equipment was purchased by a grant from the Disability Aid Foundation. Further support was also received
- [Increased neutrophil apoptosis in chronic fatigue syndrome](https://www.meresearch.org.uk/research/neutrophil-apoptosis/) - Authors Kennedy G, Spence VA, Underwood C, Belch JJF Institution Vascular Diseases Research Unit, The Institute of Cardiovascular Research, Ninewells Hospital and Medical School, Dundee, UK Support The study was funded by ME Research UK, with further support received from the Sir John Fisher Foundation(Educational Grant). Introduction Many patients with chronic fatigue syndrome (CFS) have symptoms that
- [Oxidative stress levels are raised in chronic fatigue syndrome and are associated with clinical symptoms](https://www.meresearch.org.uk/research/oxidative-stress/) - Authors Kennedy G, Spence VA, McLaren M, Hill A, Underwood C, Belch JJF Institution Vascular Diseases Research Unit, The Institute of Cardiovascular Research, Ninewells Hospital and Medical School, Dundee, UK Support The study was funded by ME Research UK, and further support was received from the Sir John Fisher Foundation (Educational Grant). Introduction The aetiology of chronic fatigue
- [Biomedical research in ME/CFS: issues and challenges](https://www.meresearch.org.uk/research/other-resources/xpg-presentation/) - Author Dr Vance Spence, Chairman of ME Research UK Presentation A presentation given on 2nd March 2005 at a reception for MSPs, members and scientists hosted by the Cross Party Group on ME (XPG) at the Scottish Parliament. Following the excellent presentation by Linda McLean on her experiences as a carer of a young person with ME, and
- [Severely overlooked by science — an overview of research on severely-ill people with ME](https://www.meresearch.org.uk/research/other-resources/severely-overlooked-by-science/) - Dr Neil C Abbot, for ME Research UK and the 25% ME Group A short version of this article originally appeared in the magazine InterAction. “Severely ill are severely overlooked; just ignored and invisible.” CMO report 2002, Section 2.3.1 (1) Ignored and invisible! When the authors of the Chief Medical Officer’s report of 2002 coined
- [Chronic fatigue syndrome: A response to the Lancet review by Prins et al](https://www.meresearch.org.uk/research/other-resources/response-to-lancet-review/) - Authors Abbot NC, Spence V Institution Vascular Diseases Research Unit, The Institute of Cardiovascular Research, Ninewells Hospital and Medical School, Dundee, UK Publication Abbot NC, Spence V. Chronic fatigue syndrome: A response to the Lancet review by Prins et al. Lancet 2006; 367: 1574. Full text The Seminar by Judith Prins and colleagues (1) purports
- [Research challenges in ME/CFS](https://www.meresearch.org.uk/research/other-resources/research-challenges/) - Author Dr Neil Abbot Introduction For Socrates, uncertainty was better than certainty because it presented challenges which, when overcome, resulted in the discovery of the real facts of the world. From this lofty viewpoint, then, ME Research UK should be proud to be working in the field of ME/CFS. Aside from the usual challenges of conventional
- [Structural and functional neuroimaging in ME/CFS](https://www.meresearch.org.uk/research/other-resources/structural-and-functional-neuroimaging/) - In historical publications on ‘epidemics’ of ME, symptoms consistent with central nervous system pathology were reported with regularity, and were as characteristic as the post-exercise malaise, myalgia or the range of other symptoms that patients experienced. Prof. Donald Acheson in his famous review (1) discussed such symptoms, pointing out that they were more consistent with cerebral
- [XMRV and ME/CFS — A tumultuous journey for scientists and patients](https://www.meresearch.org.uk/research/other-resources/xmrv-tumultuous-journey/) - Update at July 2013 The report of a potential retroviral link to ME/CFS, which is estimated to affect 0.2 to 0.4% of the population in developed countries, including between 400,000 and 900,000 people in the USA according to population-based data, certainly caught the world’s attention on 9th October 2009 — no bad thing for an under-researched
- [Misdiagnosis on a grand scale?](https://www.meresearch.org.uk/research/other-resources/misdiagnosis-on-a-grand-scale/) - Around 190,000 people have a diagnosis of MECFS in the UK, and there are approximately 9,300 newly diagnosed cases each year. Yet, how valid a diagnosis of ME/CFS really is depends crucially on the rigour of the initial clinical assessment, and the efforts made to exclude other treatable conditions that might be causing the collection
- [Research database](https://www.meresearch.org.uk/research/other-resources/research-database/) - This database consists of the summary data (including abstracts) of research publications on ME and CFS, extracted from MEDLINE and the Journal of Chronic Fatigue Syndrome. Click on the file to open it, or right-click to save onto your computer. (If you are asked for a password, just click cancel.) Please contact us if you need an alternative
- [Enhanced sensitivity of the peripheral cholinergic vascular response in patients with chronic fatigue syndrome](https://www.meresearch.org.uk/research/enhanced-sensitivity/) - Authors Spence VA, Khan F, Belch JJF Institution Vascular Diseases Research Unit, The Institute of Cardiovascular Research, Ninewells Hospital and Medical School, Dundee, UK Aims Cholinergic mechanisms are important in the control of peripheral skin perfusion and, in part, are regulated by endothelial cells. Following development of a method for assessing endothelial function by acetylcholine iontophoresis
- [Cognitive behavioural therapy for chronic fatigue syndrome (correspondence)](https://www.meresearch.org.uk/research/cognitive-behavioural-therapy/) - Authors Spence VA, Abbot NC Institution University Department of Medicine, Ninewells Hospital, Dundee, UK Correspondence Sir Judith Prins and colleagues’ report (1) leaves the clear impression that there is a powerful case for the provision of CBT as a specific therapy for CFS. However, careful assessment of published studies suggests that this impression is not evidence-based. The initial
- [Is chronic fatigue syndrome associated with platelet activation?](https://www.meresearch.org.uk/research/platelet-activation/) - Authors Kennedy G, Norris G, Spence VA, McLaren M, Belch JJF Institution Vascular Diseases Research Unit, The Institute of Cardiovascular Research, Ninewells Hospital and Medical School, Dundee, UK Support The study was funded by ME Research UK and the University of Dundee Anonymous Trust, with further support from the Sir John Fisher Foundation (Educational Grant). Introduction Chronic fatigue
- [Chronic fatigue syndrome (correspondence)](https://www.meresearch.org.uk/research/cfs-review/) - Authors Abbot NC, Spence V Institution Institute of Cardiovascular Research, Division of Medicine and Therapeutics, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK Correspondence The Seminar by Judith Prins and colleagues (1) purports to review chronic fatigue syndrome with emphasis on “scientific aspects”, yet it falls far short of this aim. Research on
- [Standing up for ME: Cardiovascular mechanisms of orthostatic intolerance](https://www.meresearch.org.uk/research/orthostatic-intolerance/) - Authors Spence VA, Stewart JM Institution Institute of Cardiovascular Research, Division of Medicine and Therapeutics, University of Dundee, Ninewells Hospital and Medical School, Dundee, UK Summary The Summer 2004 issue of Biologist — the prestigious journal of the Institute of Biology, which is the professional body for 14,000 UK biologists — contains the article “Standing
- [Symptoms of autonomic dysfunction in chronic fatigue syndrome](https://www.meresearch.org.uk/research/autonomic-dysfunction-2/) - Authors Newton JL, Okonkwo O, Sutcliffe K, Seth A, Shin J, Jones DE Institution Fatigue Interest Group and Liver Research Group, Institute of Cellular Medicine, University of Newcastle, Newcastle, UK Support Funding provided by ME Research UK and the Medical Research Council. Introduction Chronic fatigue syndrome (CFS) is common and its cause is unknown. The aim
- [Low grade inflammation and arterial wave reflection in patients with chronic fatigue syndrome](https://www.meresearch.org.uk/research/arterial-wave-reflection/) - Authors Spence VA, Kennedy G, Belch JJF, Hill A, Khan F Institution Vascular and Inflammatory Diseases Research Unit, The Institute of Cardiovascular Research, Division of Medicine and Therapeutics, Ninewells Hospital and Medical School, Dundee, UK Support This work was supported by a project grant from ME Research UK. Introduction Some of the symptoms reported by people
- [Pilot study of peripheral muscle function in primary biliary cirrhosis: potential implications for fatigue pathogenesis](https://www.meresearch.org.uk/research/biliary-cirrhosis/) - Authors Hollingsworth KG, Newton JL, Taylor R, McDonald C, Palmer JM, Blamire AM, Jones DEJ Institution Newcastle Magnetic Resonance Centre, Newcastle University, Newcastle-upon-Tyne, UK Background and Aims Primary biliary cirrhosis (PBC) is characterized in 95% of patients by autoantibody responses directed against the mitochondrial antigen pyruvate dehydrogenase complex (PDC). Although anti-PDC inhibits PDC function in
- [Postural orthostatic tachycardia syndrome is an under-recognized condition in chronic fatigue syndrome](https://www.meresearch.org.uk/research/postural-orthostatic-tachycardia/) - Authors Hoad A, Spickett G, Elliott J, Newton J Institution Northern CFS/ME Clinical Network; and Falls and Syncope Service, Institute of Cellular Medicine, Newcastle University, Newcastle; and ME NorthEast, County Durham, UK Support Funding by ME Research UK and the Local CFS/ME Clinical Network Introduction It has been suggested that postural orthostatic tachycardia syndrome (POTS)
- [A gene signature for post-infectious chronic fatigue syndrome](https://www.meresearch.org.uk/research/gene-signature/) - Authors Gow JW, Hagan S, Herzyk P, Cannon C, Behan PO, Chaudhuri A Institution Department of Biological and Biomedical Sciences, Glasgow Caledonian University, Glasgow, UK Background At present, there are no clinically reliable disease markers for chronic fatigue syndrome. DNA chip microarray technology provides a method for examining the differential expression of mRNA from a
- [An in vivo proton neurospectroscopy study of cerebral oxidative stress in myalgic encephalomyelitis (chronic fatigue syndrome)](https://www.meresearch.org.uk/research/cerebral-oxidative-stress/) - Authors Puri BK, Agour M, Gunatilake KDR, Fernando KAC, Gurusinghe AI, Treasaden IH Institution MRI Unit, Imaging Sciences Department, MRC Clinical Sciences Centre, Imperial College School of Medicine, Hammersmith Hospital, London, UK Introduction A particularly important family of antioxidant defence enzymes in the body are the glutathione peroxidases, which remove H(2)O(2) by coupling its reduction
- [Plasma IL-6, its soluble receptors and F2-isoprostanes at rest and during exercise in chronic fatigue syndrome](https://www.meresearch.org.uk/research/plasma-interleukin-6/) - Authors Robinson M, Gray SR, Watson MS, Kennedy G, Hill A, Belch JJF, Nimmo MA Institution Strathclyde Institute of Pharmacy and Biomedical Sciences, University of Strathclyde, Glasgow, UK Objectives The aim of the current study was to investigate the levels of interleukin-6 (IL-6), its soluble receptors (sIL-6R and sgp130) and F(2)-isoprostanes, at rest and during
- [Abnormalities in pH handling by peripheral muscle on 31P magnetic resonance spectroscopy and potential regulation by sympathetic autonomic function in chronic fatigue syndrome](https://www.meresearch.org.uk/research/muscle-ph-abnormalities/) - Authors Jones DEJ, Hollingsworth KG, Taylor R, Blamire AM, Newton JL Institution Institute of Cellular Medicine, Newcastle University, Newcastle-upon-Tyne, UK Objectives To examine muscle acid handling following exercise in chronic fatigue syndrome (CFS/ME) and the relationship with autonomic dysfunction. Design Observational study. Setting Regional fatigue service. Subjects and Interventions Chronic fatigue syndrome (n=16) and age
- [Unravelling the nature of post-exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome: The role of elastase, complement C4a and interleukin-1β](https://www.meresearch.org.uk/research/post-exertional-malaise/) - Authors Nijs J, Van Oosterwijck J, Meeus M, Lambrecht L, Metzger K, Fremont M, Paul L Institution Department of Human Physiology, Faculty of Physical Education and Physiotherapy, Vrije Universiteit Brussel, Brussels; and Division of Musculoskeletal Physiotherapy, Department of Health Sciences, University College Antwerp, Antwerp, Belgium Objectives Too vigorous exercise or activity increase frequently triggers postexertional
- [Impaired cardiovascular response to standing in chronic fatigue syndrome](https://www.meresearch.org.uk/research/response-to-standing/) - Authors Hollingsworth KG, Jones DEJ, Taylor R, Blamire AM, Newton JL Institution Institute of Cellular Medicine, Newcastle University, Newcastle-upon-Tyne, UK Background Impaired skeletal muscle metabolism is recognized in chronic fatigue syndrome (CFS). This study examined the relationship between skeletal and cardiac muscle function and symptoms on standing in CFS using magnetic resonance spectroscopy (MRS) and
- [Biochemical and vascular aspects of pediatric chronic fatigue syndrome](https://www.meresearch.org.uk/research/pediatric-cfs/) - Authors Kennedy G, Khan F, Hill A, Underwood C, Belch JJF Institution Vascular and Inflammatory Diseases Research Unit, The Institute of Cardiovascular Research, Centre for Cardiovascular and Lung Biology, Division of Medical Sciences, Ninewells Hospital and Medical School, Dundee, UK Objective To evaluate biochemical and vascular aspects of pediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). Design
- [Physical and functional impact of chronic fatigue syndrome/myalgic encephalomyelitis in childhood](https://www.meresearch.org.uk/research/impact-in-childhood/) - Authors Kennedy G, Underwood C, Belch JJF Institution Vascular and Inflammatory Diseases Research Unit, Centre for Cardiovascular and Lung Biology, Division of Medical Sciences, Ninewells Hospital and Medical School, Dundee, UK Objective The aim of this study was to compare self-reported and parent- or guardian-reported quality of life in a group of paediatric CFS/ME patients with
- [Pain inhibition and post-exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome: an experimental study](https://www.meresearch.org.uk/research/pain-inhibition-2/) - Authors Van Oosterwijck J, Nijs J, Meeus M, Lefever I, Huybrechts L, Lambrecht L, Paul L Institution Department of Human Physiology, Faculty of Physical Education and Physiotherapy, Vrije Universiteit Brussel, Brussels, Belgium Objectives To examine the efficacy of the pain inhibitory systems in patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) during two different types of
- [Fatigue severity remains stable over time and independently associated with orthostatic symptoms in chronic fatigue syndrome: a longitudinal study](https://www.meresearch.org.uk/research/fatigue-severity/) - Authors Jones DE, Gray J, Frith J, Newton JL Institution UK NIHR Biomedical Centre in Ageing, Institute of Cellular Medicine, Institute for Ageing and Health, Newcastle University, Newcastle, UK Objectives To examine fatigue variability over time in chronic fatigue syndrome (CFS) and the effect of other symptoms on its predictability. Design Longitudinal cohort study of
- [Murine gammaretrovirus group G3 was not found in Swedish patients with myalgic encephalomyelitis/chronic fatigue syndrome and fibromyalgia](https://www.meresearch.org.uk/research/murine-gammaretrovirus/) - Authors Elfaitouri A, Shao X, Mattsson Ulfstedt J, Muradrasoli S, Bölin Wiener A, Golbob S, Ohrmalm C, Matousek M, Zachrisson O, Gottfries CG, Blomberg J Institutions Section of Clinical Virology, Uppsala University Hospital, Uppsala, Sweden; Institution for Neuroscience and Physiology at the Sahlgrenska Academy, Gothenburg University, and Gottfries Clinic, Mölndal, Sweden Background The recent report
- [Phylogeny-directed search for murine leukemia virus-like retroviruses in vertebrate genomes and in patients suffering from myalgic encephalomyelitis/chronic fatigue syndrome and prostate cancer](https://www.meresearch.org.uk/research/xmrv-review/) - Authors Blomberg J, Sheikholvaezin A, Elfaitouri A, Blomberg F, Sjösten A, Ulfstedt JM, Pipkorn R, Källander C, Öhrmalm C, Sperber G Institution Section of Clinical Microbiology, Department of Medical Sciences, Uppsala University, Uppsala, Sweden Summary Gammaretrovirus-like sequences occur in most vertebrate genomes. Murine Leukemia Virus (MLV) like retroviruses (MLLVs) are a subset, which may be
- [No evidence for xenotropic murine leukemia-related virus infection in Sweden using internally controlled multiepitope suspension array serology](https://www.meresearch.org.uk/research/xmrv-infection-in-sweden/) - Authors Blomberg J, Blomberg F, Sjösten A, Sheikholvaezin A, Bölin-Wiener A, Elfaitouri A, Hessel S, Gottfries CG, Zachrisson O, Ohrmalm C, Jobs M, Pipkorn R Institution Section of Clinical Microbiology, Department of Medical Sciences, Uppsala University, Uppsala, Sweden Introduction Many syndromes have a large number of differential diagnoses, a situation which calls for multiplex diagnostic
- [Rational recombinant XMRV antigen preparation and bead coupling for multiplex serology in a suspension array](https://www.meresearch.org.uk/research/recombinant-xmrv-antigen/) - Authors Sheikholvaezin A, Blomberg F, Ohrmalm C, Sjösten A, Blomberg J Institution Section of Clinical Microbiology, Department of Medical Sciences, Uppsala University, Sweden Abstract Diagnosis of infectious diseases often requires demonstration of antibodies to the microbe (serology). A large set of antigens, covering viruses, bacteria, fungi and parasites may be needed. Recombinant proteins have a
- [The Newcastle NHS Chronic Fatigue Syndrome Service: not all fatigue is the same](https://www.meresearch.org.uk/research/cfs-service/) - Authors Newton JL, Mabillard H, Scott A, Hoad A, Spickett G Institution NIHR Biomedical Research Centre in Ageing; Institute for Ageing & Health, Newcastle University, Newcastle-upon-Tyne, UK Introduction In England the Department of Health has funded specialist clinical services aimed at diagnosing and managing the symptoms of chronic fatigue syndrome (CFS). These services are not
- [Large and small artery endothelial dysfunction in chronic fatigue syndrome](https://www.meresearch.org.uk/research/endo-function/) - Authors Newton DJ, Kennedy G, Chan KKF, Lang CC, Belch JJF, Khan F Institution Vascular and Inflammatory Diseases Research Unit, Institute of Cardiovascular Research, University of Dundee, Dundee, UK Background There is accumulating evidence that myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is associated with increased cardiovascular risk. The aim of this study was to assess vascular
- [Impaired cardiac function in chronic fatigue syndrome measured using magnetic resonance cardiac tagging](https://www.meresearch.org.uk/research/cardiac-function/) - Authors Hollingsworth KG, Hodgson T, Macgowan GA, Blamire AM, Newton JLP Institution Newcastle Magnetic Resonance Centre, Institute of Cellular Medicine, Newcastle University, Newcastle-upon-Tyne, UK Objectives Impaired cardiac function has been confirmed in patients with chronic fatigue syndrome (CFS). Magnetic resonance cardiac tagging is a novel technique that assesses myocardial wall function in vivo. We hypothesized
- [Loss of capacity to recover from acidosis on repeat exercise in chronic fatigue syndrome: a case–control study](https://www.meresearch.org.uk/research/acidosis/) - Authors Jones DE, Hollingsworth KG, Jakovljevic DG, Fattakhova G, Pairman J, Blamire AM, Trenell MI, Newton JL Institution Institute of Cellular Medicine, Newcastle University, Newcastle, UK Background Chronic fatigue syndrome (CFS) patients frequently describe difficulties with repeat exercise. Here, we explore muscle bioenergetic function in response to three bouts of exercise. Methods A total of
- [In the mind or in the brain? Scientific evidence for central sensitisation in chronic fatigue syndrome](https://www.meresearch.org.uk/research/sensitisation/) - Authors Nijs J, Meeus M, Van Oosterwijck J, Ickmans K, Moorkens G, Hans G, De Clerck LS Institution Department of Human Physiology, Faculty of Physical Education and Physiotherapy, Vrije Universiteit Brussel, Brussels, Belgium Background Central sensitisation entails several top-down and bottom-up mechanisms, all contributing to the hyperresponsiveness of the central nervous system to a variety
- [Establishment of the UK ME/CFS Biobank: an international resource](https://www.meresearch.org.uk/research/biobank/) - The CURE-ME research team at the London School of Hygiene & Tropical Medicine, and funders Action for ME, the ME Association, ME Research UK, and a private donor, are delighted to announce the release of the Summary Report on the Establishment Phase of the UK ME/CFS Biobank (2011–2014) (read the report). UK ME/CFS Biobank has been
- [PhD-level research funding](https://www.meresearch.org.uk/research/phd-funding/) - We recognise how important it is to invest in the ME/CFS researchers of the future by attracting new scientists into the field. Our programme of PhD-level research funding has been established to help institutions provide an early-career pathway for students interested in the illness, and to expand their areas of research. ME Research UK is
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- [Resting-state functional connectivity, cognition, and fatigue in response to cognitive exertion: a novel study in adolescents with chronic fatigue syndrome](https://www.meresearch.org.uk/research/functional-connectivity-in-adolescents/) - Authors Elisha K Josev, Charles B Malpas, Marc L Seal, Adam Scheinberg, Lionel Lubitz, Kathy Rowe, Sarah J Knight Institution Neurodisability and Rehabilitation, Murdoch Children’s Research Institute, Melbourne, Australia Abstract Emerging evidence suggests that central nervous system dysfunction may underlie the core symptoms of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in adults, such as cognitive disturbance, fatigue and post-exertional malaise. Research
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- [Pharmacological activation of AMPK and glucose uptake in cultured human skeletal muscle cells from patients with ME/CFS](https://www.meresearch.org.uk/research/pharmacological-activation-of-ampk/) - Authors Audrey E Brown, Beth Dibnah, Emily Fisher, Julia L Newton and Mark Walker Institutions Institute of Cellular Medicine, Newcastle University; Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK Abstract Background Skeletal muscle fatigue and post-exertional malaise are key symptoms of Myalgic Encephalomyelitis (ME/CFS). We have previously shown that AMPK activation and
- [Brainstem volume changes in ME/CFS and long COVID patients](https://www.meresearch.org.uk/research/brainstem-volume-changes-in-me-cfs-and-long-covid-patients/) - Principal investigator Dr Leighton BarndenGriffith University, Gold Coast, Queensland, Australia Key findings ME/CFS and long COVID patients had larger than normal volumes of several areas of the brainstem These volume changes correlated with clinical measures of pain and breathing difficulty About the study Many of the symptoms experienced by people with ME/CFS suggest abnormalities in
- [Policy issues](https://www.meresearch.org.uk/research/other-resources/policy-issues/) - Cross Party Group parliamentary reception 2012 The Medical Research Council: a case to answer? An essay on MRC research funding in ME/CFS Read the essay Download a pdf version from our Breakthrough magazine ME/CFS scientific research: CMO report and beyond. Dr Vance Spence’s presentation to the Gibson Parliamentary Enquiry About the inquiry Read the presentation Download a
- [Revisiting IgG antibody reactivity to EBV in ME/CFS and its potential application to disease diagnosis](https://www.meresearch.org.uk/research/antibody-reactivity-to-ebv/) - Researchers Nuno Sepúlveda, João Malato, Franziska Sotzny, Anna D Grabowska, André Fonseca, Clara Cordeiro, Luís Graça, Przemyslaw Biecek, Uta Behrends, Josef Mautner, Francisco Westermeier, Eliana M Lacerda & Carmen Scheibenbogen Institutes Warsaw University of Technology, Poland; Charité - Universitätsmedizin Berlin, Germany; London School of Hygiene and Tropical Medicine, UK; and others Publication Frontiers in Medicine,
- [Use of single-nucleotide polymorphisms (SNPs) to distinguish gene expression subtypes of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)](https://www.meresearch.org.uk/research/single-nucleotide-polymorphisms/) - Authors Shimosako N, Kerr JR Institution CFS Group, Department of Cellular & Molecular Medicine, St George's University of London, London, UK; and Escuela de Medicina y Ciencias de Salud, Universidad del Rosario, Bogota, Colombia Abstract Aims We have reported gene expression changes in patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and the fact that such
- [Identification of new classes of genetic susceptibility to ME](https://www.meresearch.org.uk/research/genetic-susceptibility/) - Principal investigator Dr Alfredo Iacoangeli PhD student Luke Marney Institution King's College London Start date October 2021 Funding This project is jointly funded by ME Research UK and Action for M.E. Background and aim ME Research UK and Action for M.E. are delighted to announce joint funding for a PhD studentship at King’s College London.
- [Leave a legacy](https://www.meresearch.org.uk/support-us/leave-a-legacy/) - Many people think that a gift in a Will to a charity must be a large sum – this isn’t the case. Any gift, no matter how large or how small, is important to us. Whatever you give, you really can make a difference by helping us move closer to a scientific breakthrough. All that
- [The specificity of the CDC-1994 criteria for chronic fatigue syndrome: comparison of health status in three groups of patients who fulfil the criteria](https://www.meresearch.org.uk/research/health-status-comparison/) - Authors Kennedy G, Abbot NC, Spence V, Underwood C, Belch JJF Institution Vascular Diseases Research Unit, The Institute of Cardiovascular Research, Ninewells Hospital and Medical School, Dundee, UK Support This study was supported by a grant from ME Research UK, and by the Sir John Fisher Foundation. Aim The Centers for Disease Control (CDC)-1994 definition of chronic
- [Question marks over evidential basis of claims (correspondence)](https://www.meresearch.org.uk/research/question-marks/) - Author Abbot NC Institution MERGE, Perth, UK Correspondence Sharpe and Wilks’ review (1) contains an “evidence-based summary” with the statement, “graded exercise and cognitive behavioural therapies are effective in treating chronic fatigue syndrome.” However, rigorous examination of the literature indicates that this remark is not itself evidence-based, a serious criticism since evidence-based summaries in the BMJ carry
- [Essays and commentaries](https://www.meresearch.org.uk/research/other-resources/essays-and-commentaries/) - Misdiagnosis on a grand scale? An Editorial by Dr Neil Abbot about the increasing evidence that ME/CFS is often misdiagnosed Why we need to start treating ME much more seriously. An “opinion piece” in The Herald Scotland highlighting the need for a Centre of Excellence in ME/CFS XMRV and ME/CFS — A tumultuous journey for scientists and
- [The role of epigenetic modification of BDNF and HDACs in pain and post-exertional malaise in ME/CFS](https://www.meresearch.org.uk/research/epigenetic-modification-of-bdnf-and-hdacs/) - Principal investigators Prof. Jo Nijs & Prof. Lode Godderis Institutions Vrije Univeristeit Brussel & the University of Leuven, Belgium Start date October 2020 Background and aim Epigenetics is a fascinating field looking at genetic changes that can be passed from one generation to the next, not as a result of alterations in the DNA sequence,
- [Three sharp strokes (correspondence)](https://www.meresearch.org.uk/research/three-sharp-strokes/) - Author Abbot NC Institution MERGE, Perth, UK Correspondence So, doctors have a dilemma, we are told (1). Some of them are ‘uncomfortable’ when patients present with their own diagnostic labels. One strategy is to engage in ‘constructive labelling’ which in the case of chronic fatigue syndrome (CFS), involves “...treating [it] as a legitimate illness... while
- [New developments in the biology of ME/CFS workshop 2003](https://www.meresearch.org.uk/research/other-resources/new-developments-2003/) - This one-day workshop took place at the West Park Conference Centre at the University of Dundee on 3rd October 2003. Funded by a Royal Society of Edinburgh grant (under its RSE/Wellcome Trust Research Workshops Scheme) awarded to Dr Gwen Kennedy of the Vascular Diseases Research Unit, University of Dundee, the aim was to bring together a specially-invited audience of around 35
- [Use of glucose for energy production in muscle cells from patients with ME/CFS](https://www.meresearch.org.uk/research/use-of-glucose-for-energy-production/) - Cara Tomas, Joanna L Elson, Julia L Newton & Mark Walker Translational and Clinical Research Institute, Newcastle University, Newcastle upon Tyne, UK Scientific Reports, 2020 Oct 26; 10(1):18232 Key findings Muscle cells from people with ME/CFS are less able to use glucose as a fuel to produce energy This impairment in energy production may underlie
- [Investigating sensory processing and cognitive function in people with ME: a pilot study](https://www.meresearch.org.uk/research/sensory-processing/) - Investigator Dr Sanjay Kumar Institution Oxford Brookes University, Oxford, UK Start date September 2019 Volunteers Dr Kumar is currently looking for people with ME to take part in this study. If you live in the Oxford area and would like more information, please contact Alfred Veldhuis at aveldhuis@brookes.ac.uk, who is the researcher working on the project.
- [ELUCIDATE: Exploring pain and autonomic dysfunction in ME/CFS and temporomandibular disorders](https://www.meresearch.org.uk/research/elucidate/) - Principal investigator Mr James Allison Institution School of Dental Sciences, Newcastle University Start date August 2021 Funding This project is funded by ME Research UK with the financial support of the Fred and Joan Davies Bequest. Background and aim Widespread pain affecting the muscles and joints is a significant problem for people with ME/CFS, and
- [Visual aspects of reading performance in myalgic encephalomyelitis (ME)](https://www.meresearch.org.uk/research/visual-aspects-of-reading-performance/) - Authors Rachel L. Wilson, Kevin B. Paterson, Victoria McGowan and Claire V. Hutchinson Institution Department of Neuroscience, Psychology and Behaviour, College of Life Sciences, University of Leicester, Leicester, UK Abstract People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) report vision-related reading difficulty, although this has not been demonstrated objectively. Accordingly, we assessed reading speed and acuity,
- [Sleep disturbances and severe stress as glial activators: key targets for treating central sensitization in chronic pain patients?](https://www.meresearch.org.uk/research/sleep-disturbances-and-severe-stress/) - Authors Jo Nijs, Marco L. Loggia, Andrea Polli, Maarten Moens, Eva Huysmans, Lisa Goudman, Mira Meeus, Luc Vanderweeën, Kelly Ickmans and Daniel Clauw Primary institution Department of Physiotherapy, Human Physiology and Anatomy, Pain in Motion International Research Group, Vrije Universiteit Brussel, Brussels, Belgium Abstract Introduction The mechanism of sensitization of the central nervous system partly explains the
- [Is chronic fatigue syndrome in older patients a different disease? A clinical cohort study](https://www.meresearch.org.uk/research/disease-in-older-patients/) - Authors Lewis I, Pairman J, Spickett G, Newton JL Institution Institute for Ageing & Health, Newcastle University, Newcastle upon Tyne, UK Background Chronic fatigue syndrome (CFS) is a disabling disorder characterised by persistent fatigue with a typical age of diagnosis of 35–50 years. CFS does present in those aged over 50 but whether this is
- [The experience of sleep in chronic fatigue syndrome: a qualitative interview study with patients](https://www.meresearch.org.uk/research/the-experience-of-sleep/) - Authors Gotts ZM, Newton JL, Ellis JG, Deary V Institution Faculty of Health and Life Sciences, Northumbria University, Newcastle-Upon-Tyne, UK Publication British Journal of Health Psychology 2016 Feb 26; 21(1):71–92 Funding This work was supported by Action for ME, ME Research UK, and the ME Association Ramsay Research Fund Abstract Objectives Sleep disturbances are common
- [Experimental investigation of genetic risk factors for ME/CFS revealed by the DecodeME project](https://www.meresearch.org.uk/research/genetic-risk-factors/) - Principal investigator Prof. Chris Ponting PhD student Gemma Samms Institution University of Edinburgh Start date June 2022 Funding This project is funded by ME Research UK. Background and aim We are delighted to announce ME Research UK's first award for PhD-level research. This is for a project being conducted at the University of Edinburgh by
- [Decreased NO production in endothelial cells exposed to plasma from ME/CFS patients](https://www.meresearch.org.uk/research/decreased-no-production/) - Authors R Bertinat, R Villalobos-Labra, L Hofmann, J Blauensteiner, N Sepúlveda, F Westermeier Institutions Universidad de Concepción, Concepción, Chile; FH Joanneum University of Applied Sciences, Graz, Austria; and others Publication Vascular Pharmacology, 2022 April; 143:106953 Key findings Nitric oxide (NO) production was reduced in endothelial cells exposed to blood plasma from people with ME/CFS. Inadequate
- [Research](https://www.meresearch.org.uk/research/) - The primary aim of ME Research UK is to fund biomedical research into ME/CFS – to find its cause, develop effective treatments and ultimately discover a cure. Learn about the research we have supported, apply for research funding, or learn from our other available resources. Our projects Apply for a research grant Apply for PhD
- [Dialogues for a Neglected Illness](https://www.meresearch.org.uk/research/other-resources/dialogues/) - The videos below are from 'Dialogues for a Neglected Illness’, a project supported by an award from the Wellcome Public Engagement Fund (2018–21). It is produced by Natalie Boulton with cameraman and editor Josh Biggs. The project addresses different aspects of ME/CFS, and includes interviews with and input from doctors, researchers, patients, carers and advocates. The project consists
- [Infectious triggers and mitochondrial dysfunction in ME/CFS](https://www.meresearch.org.uk/research/prusty/) - Principal investigator Dr Bhupesh Prusty Institution Julius Maximilian University of Würzburg Start date August 2021 Funding This project is funded by ME Research UK with the financial support of The Gordon Parish Charitable Trust. Background and aim Human herpesvirus 6 (HHV-6), human herpesvirus 7 and Epstein-Barr virus have all been implicated as potential infectious triggers
- [Prognosis of adolescents diagnosed with ME/CFS](https://www.meresearch.org.uk/research/prognosis-of-adolescents-diagnosed-with-me-cfs/) - Elisha K Josev, Rebecca C Cole, Adam Scheinberg, Katherine Rowe, Lionel Lubitz & Sarah J Knight Neurodisability and Rehabilitation, Murdoch Children's Research Institute, Royal Children’s Hospital, Melbourne, Australia Journal of Clinical Medicine, 2021 August 16; 10(16):3603 Key findings Australian adolescents newly diagnosed with ME/CFS were followed up between one and five years later to look at
- [Analysing antibody responses against EBV-derived antigens in ME/CFS](https://www.meresearch.org.uk/research/responses-to-ebv-antigens/) - Principal investigators Dr Nuno Sepúlveda & Prof. Carmen Scheibenbogen Institutions London School of Hygiene & Tropical Medicine and Charité Universitätmedizin Berlin Start date October 2020 Funding This project is funded by ME Research UK with the financial support of The Fred and Joan Davies Bequest. Background and aim The emergence of so-called ‘long COVID’ has
- [Cell-type specificity, molecular scope and epigenetic basis for mitochondrial and cellular dysfunction in ME/CFS](https://www.meresearch.org.uk/research/mitochondrial-and-cellular-dysfunction/) - Principal investigator Dr Sarah Annesley Institution La Trobe University, Melbourne, Australia Start date June 2021 Funding This project is funded by ME Research UK with the financial support of The Fred and Joan Davies Bequest. Background and aim Dr Sarah Annesley and Prof. Paul Fisher are based at La Trobe University in Melbourne, Australia. This
- [Herpesvirus testing in blood serum may distinguish subgroups of ME/CFS patients](https://www.meresearch.org.uk/research/herpesvirus-distinguishes-subgroups/) - Tiago Dias Domingues, Anna D Grabowska, Ji-Sook Lee, Jose Ameijeiras-Alonso, Francisco Westermeier, Carmen Scheibenbogen, Jacqueline M Cliff, Luis Nacul, Eliana M Lacerda, Helena Mouriño & Nuno Sepúlveda Charité – Universitätsmedizin Berlin, Germany; London School of Hygiene and Tropical Medicine, UK; and others Frontiers in Medicine, 2021 July 5; 8:686736 Key findings It is still not
- [Altered endothelial dysfunction‐related miRs in plasma from ME/CFS patients](https://www.meresearch.org.uk/research/endothelial-dysfunction-related-mirs/) - Authors J Blauensteiner, R Bertinat, L E León, M Riederer, N Sepúlveda, F Westermeier Institution Institute of Biomedical Science, FH Joanneum University of Applied Sciences, Graz, Austria Publication Scientific Reports, 2021 May 19; 11:10604 Key findings The levels of five microRNAs (molecules which help cells create proteins) were increased in people with ME/CFS compared with
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- [Investigating brain-stem dysfunction in ME/CFS using 7-Tesla MRI](https://www.meresearch.org.uk/research/investigating-brain-stem-dysfunction/) - Principal investigator Dr Leighton Barnden Institution Menzies Health Institute Queensland, Griffith University, Southport, Queensland, Australia Start date April 2021 Funding This project is funded by ME Research UK with the financial support of the Fred and Joan Davies Bequest. Background and aim Many of the symptoms experienced by people with ME/CFS – including problems with
- [Thank you](https://www.meresearch.org.uk/thank-you/) - From all the team at ME Research UK, we thank you for supporting our work in informing, influencing, and investing in ME research. The research you are supporting is happening right now across the world. If you would like to be kept inform about ME research globally, please let us stay in contact with you.
- [Walk for ME 2021](https://www.meresearch.org.uk/support-us/walk-for-me/) - ME Research UK is grateful once more to be chosen as one of the featured charities for 2021’s Walk for ME scheme. Covid-19 restrictions permitting and adhering to all social distancing and health advice, the initiative is most popular around ME Awareness Week. Now in its ninth consecutive year, the scheme has encouraged supporters to walk, run, swim and
- [Experiences of living with severe ME/CFS](https://www.meresearch.org.uk/research/living-with-severe-me/) - Victoria Strassheim, Julia Newton & Tracy Collins Newcastle upon Tyne Hospitals NHS Foundation Trust and Newcastle University Healthcare, 2021; 9(2):168 Key findings Very little research has been conducted in people with severe ME/CFS, partly because their health burden make it difficult for them to engage in studies Interviews with five people with severe ME/CFS explored
- [The effect of activated HERVs and the associated immune response in severe ME/CFS](https://www.meresearch.org.uk/research/activated-hervs-and-immune-response/) - Principal investigator Prof. Elisa Oltra Institution Catholic University of Valencia, Valencia, Spain Start date December 2020 Background and aim Epigenetics has become a very promising field in the search for explanations about how ME/CFS develops. It refers to the many ways in which our body can turn our genes on or off in a cell,
- [Increased BDNF levels may play an important role in the pathophysiology of ME/CFS](https://www.meresearch.org.uk/research/role-of-increased-bdnf-levels-in-pathophysiology/) - Andrea Polli, Manosij Ghosh, Jelena Bakusic, Kelly Ickmans, Dora Monteyne, Brigitte Velkeniers, Bram Bekaert, Lode Godderis & Jo Nijs Vrije Universiteit Brussel & Katholieke Universiteit Leuven, Belgium Arthritis & Rheumatology, 2020 Nov; 72(11):1936–44 Key findings BDNF is a protein – released during exercise and physical activity – which can increase the sensitivity of pain pathways
- [Cellular bioenergetics is impaired in patients with chronic fatigue syndrome](https://www.meresearch.org.uk/research/cellular-bioenergetics/) - Authors Cara Tomas C, Brown A, Strassheim V, Elson J, Newton J, Manning P Institution Institute of Cellular Medicine, Newcastle University, Newcastle upon Tyne, UK Abstract Chronic fatigue syndrome (CFS) is a highly debilitating disease of unknown aetiology. Abnormalities in bioenergetic function have been cited as one possible cause for CFS. Preliminary studies were performed to investigate cellular
- [Does motor cortex engagement during movement preparation differentially inhibit nociceptive processing in patients with chronic whiplash associated disorders, chronic fatigue syndrome and healthy controls? An experimental study](https://www.meresearch.org.uk/research/nociceptive-processing/) - Authors Lisa Goudman, André Mouraux, Liesbeth Daenen, Jo Nijs, Patrick Cras, Nathalie Roussel, Maarten Moens, Dorine Lenoir, Iris Coppieters, Eva Huysmans, Margot De Kooning Institution Department of Physiotherapy, Human Physiology and Anatomy, Faculty of Physical Education & Physiotherapy, Vrije Universiteit Brussel, Brussels, Belgium Publication Journal of Clinical Medicine, 2020 May 18; 9(5):1520 Key findings Preparing
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- [ME/CFS: A research and clinical conundrum](https://www.meresearch.org.uk/research/other-resources/workshop-presentation-2003/) - Author Dr Vance Spence, Senior Research Fellow, Vascular Diseases Research Unit, Department of Medicine, University of Dundee, and Chairman of ME Research UK Presentation A presentation given on 3rd October 2003 at the workshop ‘New developments in the biology of ME/CFS’ at the West Park Conference Centre, University of Dundee Welcome to everyone attending this research
- [Cross Party Group parliamentary reception 2012](https://www.meresearch.org.uk/research/other-resources/cross-party-group-2012/) - As part of ME Awareness Week, from the 6th to 12th May 2012, the Cross-Party Group on ME at the Scottish Parliament hosted a reception attended by MSPs, ME charities and groups, and their guests. The aim of parliamentary Cross-Party Groups is provide an opportunity for members of all parties, outside organisations and the public to meet
- [Exercise-induce hyperalgesia, complement system and elastase activation in myalgic encephalomyelitis/chronic fatigue syndrome – a secondary analysis of experimental comparative studies](https://www.meresearch.org.uk/research/exercise-induced-hyperalgesia/) - Authors Andrea Polli, Jessica Van Oosterwijck, Mira Meeus, Luc Lambrecht, Jo Nijs and Kelly Ickmans Institution Pain in Motion Research Group, Department of Physiotherapy, Human Physiology and Anatomy, Faculty of Physical Education and Physiotherapy, Vrije Universiteit Brussels, Brussels, Belgium Abstract Background and aims The interaction between the immune system and pain has been thoroughly explored
- [Defining the prevalence and symptom burden of those with self-reported severe chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a two-phase community pilot study in the North East of England](https://www.meresearch.org.uk/research/prevalence-and-symptom-burden/) - Authors Victoria Jane Strassheim, Madison Sunnquist, Leonard A Jason, Julia L Newton Institutions Research and Innovation Hub/CRESTA Fatigue Clinic, Newcastle upon Tyne Hospitals NHS Foundation Trust; Institute of Ageing and Health, Newcastle University, Newcastle upon Tyne, UK; Center for Community Research, De Paul University, Chicago, Illinois, USA Abstract Objectives To define the prevalence of severe chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)
- [ME/CFS Research: What do patients want? Why isn’t it happening?](https://www.meresearch.org.uk/research/other-resources/what-do-patients-want/) - This is an expanded version of a talk given by Dr Neil Abbot (Operations Director of ME Research UK) at the Royal Society of Medicine conference “Medicine and me: ME and CFS — Hearing the patient’s voice” on Saturday 11th July 2009. Download a pdf version of this talk here (386 KB) Introduction In 2008,
- [Presentation to the Gibson Parliamentary Inquiry](https://www.meresearch.org.uk/research/other-resources/gibson-parliamentary-inquiry/) - On Wednesday 7th June 2006, Dr Vance Spence and Dr Neil Abbot travelled to the Millbank offices of the House of Commons in London for a presentation at the third oral hearing of the Group on Scientific Research into ME (Gibson Parliamentary Inquiry). The Group was established by Dr Ian Gibson, Labour MP for Norwich
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- [Breakthrough – Terms and Conditions](https://www.meresearch.org.uk/research/bt-terms/) - Breakthrough magazine is published twice a year and is provided free of charge. We encourage your comments and suggestions for future articles. Click here to download previous issues. To subscribe to the print version of the magazine, contact:ME Research UK, The Gateway,North Methven Street, Perth PH1 5PP, UKTel: +44 (0)1738 451234E-mail: contact@meresearch.org.uk ME Research UK funds
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- [Talks and presentations](https://www.meresearch.org.uk/research/other-resources/talks-and-presentations/) - Dr Vance Spence’s 2010 presentation to the Sheffield ME Group ME/CFS Research: What do patients want? Why isn’t it happening? A talk given by Dr Neil Abbot at the Royal Society of Medicine Read a transcript of the talk Download a pdf version Energising biomedical research in ME/CFS. A DVD presentation by Dr Vance Spence, Chairman of
- [Why we need to start treating ME much more seriously](https://www.meresearch.org.uk/research/other-resources/treating-me-seriously/) - This opinion piece by Dr Neil Abbot was published in The Herald newspaper on July 27th 2010. Read it at the Herald Scotland website. David has been ill for 21 years. An engineer and a keen squash player, he started to feel unwell and got progressively worse over several weeks until he felt dreadful — in
- [Standing up for ME](https://www.meresearch.org.uk/research/other-resources/standing-up-for-me/) - Authors Dr Vance Spence and Professor Julian Stewart Publication Biologist 2004; 51(2): 65–70. A full-colour copy has been released by the Institute of Biology, and can be found here: Standing up for ME (pdf 144 KB). Summary The Summer 2004 issue of Biologist — the prestigious journal of the Institute of Biology, which is the professional
- [The Medical Research Council: a case to answer?](https://www.meresearch.org.uk/research/other-resources/mrc-case-to-answer/) - In May 2003, the Medical Research Council (MRC) announced its “research strategy for CFS/ME”, widely welcomed as the first formal research strategy for the illness. It listed a number of strategic themes of particular importance (case definition, epidemiology, pathophysiology, interventions, health service research, research capacity and the value of lay participation). Subsequent initiatives by the MRC included the
- [The NICE Clinical Guideline: from content to clinic](https://www.meresearch.org.uk/research/other-resources/nice-clinical-guideline/) - February 11th and 12th 2009 marked the failure of the legal challenge to the National Institute for Clinical Excellence (NICE) Guideline on CFS/ME (Clinical Guideline 53, pdf 847 KB) at the High Court in London, with Professor Littlejohns of NICE commenting, “We’re delighted that this issue is now closed” (read a report on the BBC News website). The judgment
- [Shattered](https://www.meresearch.org.uk/research/other-resources/shattered/) - Author Lynn Michell Publishers Thorsons, May 2003 Introduction Some copies of Shattered are still available to order on Amazon.co.uk. In Shattered, Lynn Michell tells of haunting episodes in her own life with ME, a “still life” suspended by a savagely capricious illness, as well as the stories of many others: men, women and young people. These voices
- [Whole blood human transcriptome and virome analysis of ME/CFS patients experiencing post-exertional malaise following cardiopulmonary exercise testing](https://www.meresearch.org.uk/research/transcriptome-and-virome-analysis/) - Authors Bouquet J, Li T, Gardy JL, Kang X, Stevens S, Stevens J, VanNess M, Snell C, Potts J, Miller RR, Morshed M, McCabe M, Parker S, Uyaguari M, Tang P, Steiner T, Chan WS, De Souza AM, Mattman A, Patrick DM, Chiu CY Institution School of Population and Public Health, University of British Columbia,
- [What is known about severe and very severe chronic fatigue syndrome? A scoping review](https://www.meresearch.org.uk/research/severe-cfs-review/) - Authors Victoria Strassheim, Rebecca Lambson, Katie L. Hackett and Julia L. Newton Institutions CRESTA Fatigue Clinic, Newcastle upon Tyne Hospitals NHS Foundation Trust; Faculty of Medical Sciences, Newcastle University, Newcastle upon Tyne, UK Abstract Background Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) affects 0.4% of the population. It is characterised by disabling fatigue and a combination of self-reported symptoms which include impairments
- [DVD Presentation](https://www.meresearch.org.uk/research/other-resources/dvd-presentation/) - The short lecture, Energising Biomedical Research in ME/CFS, by Dr Vance Spence, Chairman of ME Research UK, is now available. This film discusses some issues and challenges involved in researching the illness, and gives a brief overview of some of our recent research, including some listed on our research pages. As there is an urgent
- [ME Research: Making the Breakthrough](https://www.meresearch.org.uk/research/other-resources/making-the-breakthrough/) - A highly successful fundraiser for cancer research told me that in the 1960s, when she began, the word ‘cancer’ could barely be whispered. But over years, thanks to the efforts of people like her, there was a sea change in awareness… We have to do the same — it is ground-level, back-breaking work, but only
- [ME/CFS scientific research: CMO report and beyond](https://www.meresearch.org.uk/research/other-resources/gibson-presentation/) - This presentation is also available in pdf format (1.7 MB). A presentation by ME Research UK Chairman Dr Vance Spence to the Group on Scientific Research into Myalgic Encephalomyelitis (Gibson Parliamentary Inquiry), on 7th June 2006 at Portcullis House, Westminster, UK. There are a great many sick people out there — and some have had ME for many
- [Advances in the biomedical investigation of ME](https://www.meresearch.org.uk/research/other-resources/advances-in-biomedical-investigation/) - Authors Drs Neil Abbot and Vance Spence Institution Director of Operations and Chairman, respectively, of ME Research UK. Publication This article was written at the invitation of the UK charity Action for ME, and was first published in the May 2004 issue of its newsletter InterAction. Now all the youth of England are on fire, And silken
- [Cross Party Group Parliamentary reception](https://www.meresearch.org.uk/research/other-resources/cross-party-group/) - On 2nd March 2005, the Cross Party Group on ME (XPG) at the Scottish Parliament hosted a reception for MSPs, members and scientists, designed to bring together a range of people concerned about the problem of ME/CFS, and to raise awareness of the issues among parliamentarians. The meeting was opened by Alex Fergusson, Chairman of the XPG,
- [Colloquium on ME/CFS Biomedical Research 2006](https://www.meresearch.org.uk/research/other-resources/research-colloquium-2006/) - The Colloquium on ME/CFS Biomedical Research which took place on Monday 3rd July 2006 at Glasgow Caledonian University was particularly targeted at scientific and healthcare professionals with a working interest in ME/CFS. Hosted by Dr Lorna Paul, Lecturer in Physiotherapy at Glasgow Caledonian University and HealthQWest Research Fellow, and organised and sponsored by ME Research UK and the Irish ME Trust,
- [Broader Lands and Better Days — A Report on the 6th International Conference of the American Association for CFS, February 2003](https://www.meresearch.org.uk/research/other-resources/aacfs-conference-2003/) - Neil Abbot, Director of Operations, ME Research UK The AACFS conference of January–February 2003, held in Washington DC, contained several valuable contributions towards the understanding of ME/CFS. It differed from previous meetings in giving prominent coverage to the clinical overlaps between ME/CFS and both fibromyalgia and multiple chemical sensitivity. The clinical day — aimed at the education of
- [A Review of ‘The Clinical Syndrome Variously Called Benign Myalgic Encephalomyelitis, Iceland Disease and Epidemic Neuromyasthenia’](https://www.meresearch.org.uk/research/other-resources/acheson-review/) - Authors Original article by ED Acheson. Review by Dr J Gordon Parish, Patron of ME Research UK. Publication Original publication in American Journal of Medicine, 1959. Review Many of the findings described in the landmark Acheson 1959 paper (1) are very much relevant to our understanding of ME today. The disease was initially thought to resemble poliomyelitis until
- [Pain characteristics of people with ME/CFS](https://www.meresearch.org.uk/research/pain-characteristics/) - Authors Marshall R, Paul L, McFadyen AK, Rafferty D, Wood L Institutions Division of Nursing and Health Care, Faculty of Medicine, Glasgow University, UK; School of Biological and Biomedical Sciences, Glasgow Caledonian University, Glasgow, UK Objectives Until now, there has been a lack of fundamental research into the pain experienced in chronic fatigue syndrome (CFS).
- [The search for pain relief in people with chronic fatigue syndrome: a descriptive study](https://www.meresearch.org.uk/research/pain-relief/) - Authors Marshall R, Paul L, Wood L Institution Nursing and Health Care, Faculty of Medicine, University of Glasgow, Glasgow, Scotland, UK Aim The purpose of this study was to investigate the use and perceived benefit of complimentary and alternative medicine (CAM) and physiotherapy treatments tried by people with chronic fatigue syndrome (CFS) to ease painful
- [Combatting oxidative stress](https://www.meresearch.org.uk/research/combat-oxidative-stress/) - Principal Investigator Prof. Faisel Khan Institution Division of Systems Medicine, University of Dundee, Dundee, UK Start date May 2014 Background and aim Over the past decade, ME Research UK-funded researchers at the University of Dundee have uncovered a range of biological abnormalities in ME/CFS patients (see below), including high levels of apoptotic (dying) white blood
- [Role of Sirt1/NOS axis in vascular and immune homeostasis: a missing piece in the ME/CFS puzzle?](https://www.meresearch.org.uk/research/sirt1-nos-axis/) - Principal Investigator Dr Francisco Westermeier Institution Institute of Biomedical Science, FH Joanneum University of Applied Sciences, Graz, Austria Start date September 2019 Background and aim The immune system is a hot topic at the moment in ME research. Many studies in this area have been recently published or are ongoing, including four currently being funded
- [Epigenetics of the BDNF gene and its relevance for pain: an exploratory study](https://www.meresearch.org.uk/research/bdnf-epigenetics/) - Principal Investigators Prof Jo Nijs & Prof Lode Godderis Institutions Vrije Universiteit Brussel, University Hospital Brussels & University of Leuven Funding ME Research UK Background and aim Chronic pain is debilitating and very common, and is a particular problem in people with ME/CFS, 80–90% of whom report severe pain and/or muscle or joint pain. In
- [Neurological biomarkers in paediatric ME/CFS](https://www.meresearch.org.uk/research/neurological-biomarkers/) - Principal Investigators Dr Sarah Knight and colleagues Institution Murdoch Children’s Research Institute, The Royal Children's Hospital, University of Melbourne, Melbourne, Australia Funding ME Research UK Background and aim There are few, if any, good estimates of the numbers of children affected by ME/CFS. Assuming rough prevalence figures of 60 to 70 cases per 100,000, however,
- [Two dimensional sequencing and machine learning to maximise genetic marker detection](https://www.meresearch.org.uk/research/genetic-marker-detection/) - Principal Investigator Prof. Brett Lidbury Institution The John Curtin School of Medical Research, Australian National University, Canberra, Australia Start date July 2016 Background and aim Thanks to recent technological advances, the genome of any individual (a complete set of their DNA) can be rapidly surveyed from a single sample of tissue using machine automation. This
- [The role of autoantibodies in ME/CFS](https://www.meresearch.org.uk/research/role-of-autoantibodies/) - Principal Investigators Dr Madlen Löbel & Prof. Carmen Scheibenbogen Institution Institute of Medical Immunology, Charité University Medicine Berlin, Berlin, Germany Start date February 2017 Background and aim Antibodies are proteins produced by our immune system which can recognise and attack harmful invaders such as bacteria and viruses. Autoantibodies, on the other hand, occur when the
- [Investigating abnormalities in AMPK activation](https://www.meresearch.org.uk/research/investigating-abnormalities-in-ampk-activation/) - Principal Investigator Prof. Mark Walker Institution Institute of Cellular Medicine, Newcastle University, Newcastle, UK Start date 1 April 2017 Background and aim Abnormal muscle fatigue is one of the most common symptoms reported by people with ME/CFS, and can occur even after periods of only mild exercise. Since 2006, ME Research UK has provided pilot
- [Exploring an anti-citrullinated antibody signature in ME/CFS](https://www.meresearch.org.uk/research/anti-citrullinated-antibody/) - Prof. Mercedes Rincon College of Medicine, University of Vermont, Burlington, Vermont, USA Key findings Anti-citrullinated autoantibodies have a pathological role in autoimmune diseases such as rheumatoid arthritis, and have previously been detected in blood samples from people with ME/CFS However, in this study, serum levels of IgG1 anti-CCP and IgG4 anti-CCP were not different between
- [What is in a name? Comparing diagnostic criteria for chronic fatigue syndrome with or without fibromyalgia](https://www.meresearch.org.uk/research/comparing-diagnostic-criteria/) - Authors Meeus M, Ickmans K, Struyf F, Kos D, Lambrecht L, Willekens B, Cras P, Nijs J Institution Department of Rehabilitation Sciences and Physiotherapy, Faculty of Medicine and Health Sciences, Ghent University, Ghent, Belgium Funding Kelly Ickmans is a research fellow of ME Research UK. The study was funded by a research grant ME Research
- [Vision-related symptoms as a clinical feature of chronic fatigue syndrome/myalgic encephalomyelitis? Evidence from the DePaul Symptom Questionnaire](https://www.meresearch.org.uk/research/vision-related-symptoms/) - Authors Hutchinson CV, Maltby J, Badham SP, Jason LA Institution College of Medicine, Biological Sciences and Psychology, University of Leicester, Leicester, UK Background People diagnosed with CFS/ME consistently report that they experience vision-related symptoms associated with their illness and some of these reports are being verified experimentally. Although vision-related symptoms may represent a significant clinical
- [Abnormalities of AMPK activation and glucose uptake in cultured skeletal muscle cells from individuals with chronic fatigue syndrome](https://www.meresearch.org.uk/research/abnormalities-of-ampk-activation/) - Authors Brown AE, Jones DJ, Walker M, Newton JL Institution Institute of Cellular Medicine, William Leech Building, Medical School, Newcastle University, Newcastle upon Tyne, United Kingdom Publication PLoS ONE 2015 April 2; 10(4): e0122982 Funding This research was supported by ME Research UK and by the National Institute for Health Research (NIHR) Newcastle Biomedical Research
- [The UK ME/CFS Biobank for biomedical research on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) and Multiple Sclerosis](https://www.meresearch.org.uk/research/uk-mecfs-biobank-for-biomedical-research/) - Authors Eliana M Lacerda, Erinna W Bowman, Jacqueline M Cliff, Caroline C Kingdon, Elizabeth C King, Ji-Sook Lee, Taane G Clark, Hazel M Dockrell, Eleanor M Riley, Hayley Curran and Luis Nacul Institutions CureME Research Team, International Centre for Evidence in Disability (ICED), Department of Clinical Research (CRD); Department of Immunology & Infection; Department of Pathogen Molecular
- [Understanding severely affected chronic fatigue syndrome (CFS): the gravity of the situation](https://www.meresearch.org.uk/research/gravity-of-the-situation/) - Authors Victoria Strassheim, Robert Ballantine, Katie L. Hackett, James Frith, Julia L. Newton Institutions CRESTA Fatigue Clinic, Newcastle upon Tyne Hospitals, NHS Foundation Trust; Faculty of Medical Sciences, Newcastle University, Newcastle Upon Tyne, UK Abstract Objective To describe how the effects of gravity may adversely affect the neuro-cardiovascular physiology of individuals with severe Chronic Fatigue Syndrome (CFS). Design
- [Using a participatory approach to develop and implement the UK ME/CFS Biobank (Editorial)](https://www.meresearch.org.uk/research/biobank-editorial/) - Authors Eliana M Lacerda, Caroline C Kingdon, Erinna W Bowman and Luis Nacul Institution Faculty of Infectious & Tropical Diseases, Department of Clinical Research, London School of Hygiene & Tropical Medicine, International Centre for Evidence in Disability, London, UK Introduction Since the millennium, we have witnessed an increasing number of biobanks acting as key infrastructure for biomedical
- [Tolerance to repeated maximal exercise in ME/CFS](https://www.meresearch.org.uk/research/tolerance-to-repeated-exercise/) - Authors Taub E, Stein E, MacIntosh BR Institution Faculty of Kinesiology, University of Calgary, Calgary, Alberta, Canada Objectives This study evaluated responses to repeated incremental exercise in individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) based on changes in voluntary activation ratio (VAR), peripheral fatigue and rating of perceived exertion (RPE). Due to reduced exercise tolerance,
- [The UK ME/CFS Biobank: A Disease-Specific Biobank for Advancing Clinical Research Into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome](https://www.meresearch.org.uk/research/disease-specific-biobank/) - Authors Eliana M Lacerda, Kathleen Mudie, Caroline C Kingdon, Jack D Butterworth, Shennae O'Boyle and Luis Nacul Institution Department of Clinical Research, Faculty of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, London, UK Abstract Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling disease characterized by unexplained incapacitating fatigue, accompanied by variable
- [Serotonergic descending inhibition in chronic pain: design, preliminary results and early cessation of a randomized controlled trial](https://www.meresearch.org.uk/research/serotonergic-inhibition/) - Authors Meeus M, Ickmans K, De Clerck LS, Moorkens G, Hans G, Grosemans S, Nijs J Institution Department of Human Physiology, Faculty of Physical Education and Physiotherapy, Vrije Universiteit Brussel, Brussels, Belgium Aim We examined whether activation of serotonergic descending pathways improves pain inhibition during exercise in patients with chronic fatigue syndrome (CFS) and comorbid
- [The association between daytime napping and cognitive functioning in chronic fatigue syndrome](https://www.meresearch.org.uk/research/daytime-napping-and-cognitive-functioning/) - Authors Gotts ZM, Ellis JG, Deary V, Barclay N, Newton JL Institution Faculty of Health and Life Sciences, Northumbria University, Newcastle-upon-Tyne; Institute of Cellular Medicine, Medical School, Newcastle University & Newcastle Hospitals NHS Foundation Trust and UK NIHR Biomedical Research Centre in Ageing, Newcastle-upon-Tyne, UK Publication PLoS One, 2015 Jan 9; 10(1): e0117136 Funding This
- [The effect of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) severity on cellular bioenergetic function](https://www.meresearch.org.uk/research/cellular-bioenergetic-function/) - Authors Cara Tomas, Joanna L Elson, Victoria Strassheim, Julia L Newton, Mark Walker Institution Translational and Clinical Research Institute, Newcastle University, Newcastle upon Tyne, UK Publication PLoS One, 2020 April 10; 15(4):e0231136 Key findings Moderately affected (housebound) patients have a mitochondrial impairment Severely affected (bedbound) patients have mitochondrial and glycolytic impairments Comment by ME Research
- [Regional grey and white matter volumetric changes in myalgic encephalomyelitis (chronic fatigue syndrome): a voxel-based morphometry 3-T MRI study](https://www.meresearch.org.uk/research/brain-mri/) - Authors Puri BK, Jakeman PM, Agour M, Gunatilake KD, Fernando KA, Gurusinghe AI, Treasaden IH, Waldman AD, Gishen P Institution Department of Imaging, Hammersmith Hospital, London, UK Objective It is not established whether myalgic encephalomyelitis/chronic fatigue syndrome (CFS) is associated with structural brain changes. The aim of this study was to investigate this by conducting
- [Plasma endothelin-1 levels in chronic fatigue syndrome](https://www.meresearch.org.uk/research/plasma-endothelin-1-levels/) - Authors Kennedy G, Spence V, Khan F, Belch JJF Institution Vascular Diseases Research Unit, The Institute of Cardiovascular Research, Ninewells Hospital and Medical School, Dundee, UK Background A previous study has shown increased endothelin-1 (ET-1) levels in patients with a diagnosis of fibromyalgia syndrome (FMS), concluding that this might contribute to some of the apparent vascular
- [Recovery of upper limb muscle function in chronic fatigue syndrome with and without fibromyalgia](https://www.meresearch.org.uk/research/upper-limb-muscle-function/) - Authors Ickmans K, Meeus M, De Kooning M, Lambrecht L, Nijs J Institution Pain in Motion Research Group, Department of Human Physiology and Physiotherapy, Faculty of Physical Education & Physiotherapy, Vrije Universiteit Brussel, Brussel, Belgium Background Chronic fatigue syndrome (CFS) patients frequently complain of muscle fatigue and abnormally slow recovery, especially of the upper limb
- [Recovery of peripheral muscle function from fatiguing exercise and daily physical activity level in patients with multiple sclerosis: A case control study](https://www.meresearch.org.uk/research/recovery-of-peripheral-muscle-function/) - Authors Ickmans K, Simoens F, Nijs J, Kos D, Cras P, Willekens B, Meeus M Institution Department of Physical Medicine and Physiotherapy, University Hospital Brussels, Belgium Objectives Delayed recovery of muscle function following exercise has been demonstrated in the lower limbs of patients with multiple sclerosis (MS). However, studies examining this in the upper limbs
- [Reduced cardiac volumes in chronic fatigue syndrome associate with plasma volume but not length of disease: a cohort study](https://www.meresearch.org.uk/research/reduced-cardiac-volumes/) - Authors Newton JL, Finkelmeyer A, Petrides G, Frith J, Hodgson T, Maclachlan L, MacGowan G and Blamire AM Institution Institute of Cellular Medicine, Newcastle University, Newcastle upon Tyne Hospitals NHS; Newcastle Magnetic Resonance Centre, Newcastle upon Tyne, UK Published abstract Objectives To explore potential mechanisms that underpin the cardiac abnormalities seen in chronic fatigue syndrome
- [Reading between the lines of visual discomfort in Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS)](https://www.meresearch.org.uk/research/reading-between-the-lines-of-visual-discomfort-in-myalgic-encephalomyelitis-me-and-chronic-fatigue-syndrome-cfs/) - Authors Rachel L. Wilson Institution Vision and Language Research Group, University of Leicester. Leicester, UK Abstract ME/CFS is a debilitating disorder affecting at least 250,000 people in the United Kingdom. This condition has a number of incapacitating symptoms including post-exertional fatigue, cognitive deficits, and flu-like symptoms. However, with an unresolved aetiology, controversial diagnosis, and no
- [Physical activity intensity but not sedentary activity is reduced in chronic fatigue syndrome and is associated with autonomic regulation](https://www.meresearch.org.uk/research/physical-activity/) - Authors Newton JL, Pairman J, Hallsworth K, Moore S, Plötz T, Trenell MI Institution UK National Institute for Health Research, Biomedical Research Centre in Ageing and Age-related Disease, Institute for Ageing and Health, Newcastle University, Newcastle, UK Background Chronic fatigue syndrome (CFS) is a common debilitating condition associated with reduced function and impaired quality of
- [Orthostatic symptoms predict functional capacity in chronic fatigue syndrome: implications for management](https://www.meresearch.org.uk/research/orthostatic-symptoms/) - Authors Costigan A, Elliott C, McDonald C, Newton JL Institution NIHR Biomedical Research Centre in Ageing-Cardiovascular Theme, Newcastle University, Newcastle, UK Objectives To establish the relationship between the functional impairment experienced by Chronic fatigue syndrome (CFS) patients and the symptoms frequently experienced by those with CFS; specifically cognitive impairment, fatigue and orthostatic symptoms. Design Cross
- [Physiological cost of walking in those with chronic fatigue syndrome (CFS): a case–control study](https://www.meresearch.org.uk/research/cost-of-walking/) - Authors Paul L, Rafferty D, Marshal R Institution Faculty of Medicine, Nursing and Health Care, University of Glasgow, Glasgow, UK Purpose To examine the physiological cost of walking in subjects with chronic fatigue syndrome (CFS) and a matched control group, walking at their preferred and at matched walking speeds. Methods Seventeen people with CFS and
- [Perceived fatigue in different disease groups](https://www.meresearch.org.uk/research/perceived-fatigue/) - Authors Jones DEJ, Gray JC, Newton J Institution Institute of Cellular Medicine, Newcastle University, Newcastle, UK Background Studies have established that levels of fatigue vary between different patient groups. It is less clear whether the nature, as opposed to severity of fatigue differs between groups. Objective To examine descriptions of fatigue by patients with a
- [Lower ambulatory blood pressure in chronic fatigue syndrome](https://www.meresearch.org.uk/research/ambulatory-blood-pressure/) - Authors Newton JL, Sheth A, Shin J, Pairman J, Wilton K, Burt JA, Jones DEJ Institution Cardiovascular Investigation Unit, Institute of Cellular Medicine, Newcastle University, Newcastle, UK Objective To examine blood pressure circadian rhythm in subjects with chronic fatigue syndrome (CFS) and appropriate normal and fatigued controls to correlate parameters of blood pressure regulation with
- [Patterns of abnormal visual attention in myalgic encephalomyelitis](https://www.meresearch.org.uk/research/abnormal-visual-attention/) - Authors Hutchinson CV, Badham SP Institution College of Medicine, Biological Sciences and Psychology, University of Leicester, Leicester, UK Purpose To experimentally assess visual attention difficulties commonly reported by those with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Methods Twenty-nine ME/CFS patients and 29 controls took part in the study. Performance was assessed using the Useful Field of
- [Motoneurone excitability after fatiguing exercise in subjects with ME/CFS](https://www.meresearch.org.uk/research/motoneurone-excitability/) - Authors Wood L, Sutherland G, Day L, Paul L Institution Department of Biological and Biomedical Sciences, Glasgow Caledonian University, Glasgow, UK Introduction Muscle fatigue is a complex and multifactorial phenomenon which affects the ability of individuals to maintain adequate force during voluntary contraction following a period of exercise. The physiological mechanisms responsible for this decline
- [MicroRNAs hsa-miR-99b, hsa-miR-330, hsa-miR-126 and hsa-miR-30c: Potential Biomarkers in Natural Killer (NK) Cells of Patients with ME/CFS](https://www.meresearch.org.uk/research/microrna/) - Authors Petty RD, McCarthy NE, Le Dieu R, Kerr JR Institution CFS Group, St George's University of London, Cranmer Terrace; Centre for Haemato-Oncology, Bart's cancer institute, Queen Mary University of London, London, UK; Grupo de Salud Publica, Escuela de Medicine y Ciencias de la Salud, Universidad del Rosario, Quinta de Mutis, Bogotá, Colombia. Abstract Background
- [ME/CFS Disease Register](https://www.meresearch.org.uk/research/mecfs-disease-register/) - Action for M.E., the ME Association and ME Research UK are jointly releasing this statement to update our supporters on the ME/CFS Disease Register project, which has now come to an end. The maintenance and regular update of all the information held in the Disease Register is no longer a priority for the limited research
- [Metabolic abnormalities in chronic fatigue syndrome/myalgic encephalomyelitis: a mini-review](https://www.meresearch.org.uk/research/metabolic-abnormalities-in-cfs-me/) - Authors Cara Tomas and Julia Newton Institutions Institute of Cellular Medicine, Newcastle University; Newcastle upon Tyne Hospitals, NHS Foundation Trust, Newcastle upon Tyne, UK Abstract Chronic fatigue syndrome (CFS), commonly known as myalgic encephalomyelitis (ME), is a debilitating disease of unknown etiology. CFS/ME is a heterogeneous disease associated with a myriad of symptoms but with
- [Mitochondrial complex activity in permeabilised cells of chronic fatigue syndrome patients using two cell types](https://www.meresearch.org.uk/research/mitochondrial-complex-activity/) - Authors Cara Tomas, Audrey E. Brown, Julia L. Newton, and Joanna L. Elson Institution Institute of Cellular Medicine, Newcastle University, Newcastle upon Tyne, UK Abstract Abnormalities in mitochondrial function have previously been shown in chronic fatigue syndrome (CFS) patients, implying that mitochondrial dysfunction may contribute to the pathogenesis of disease. This study builds on previous
- [Questions and answers about the biobank](https://www.meresearch.org.uk/research/biobank-questions/) - Three charities – Action for ME, the ME Association and ME Research UK – and a private donor have joined forces to fund the UK’s first biobank of human blood samples for research into the causes of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The biobank will be situated at London’s Royal Free Hospital where it will
- [Impaired blood pressure variability in chronic fatigue syndrome: a potential biomarker](https://www.meresearch.org.uk/research/blood-pressure-variability/) - Authors Frith J, Zalewski P, Klawe JJ, Pairman J, Bitner A, Tafil-Klawe M, Newton JL Institution UK NIHR Biomedical Research Centre in Ageing, Newcastle, UK Introduction Autonomic dysfunction is common in chronic fatigue syndrome (CFS). This study set out to derive an autonomic biomarker using a comprehensive assessment of heart rate and blood pressure variability.
- [Epitopes of microbial and human heat shock protein 60 and their recognition in myalgic encephalomyelitis](https://www.meresearch.org.uk/research/human-heat-shock-protein/) - Authors Elfaitouri A, Herrmann B, Bölin-Wiener A, Wang Y, Gottfries CG, Zachrisson O, Pipkorn R, Rönnblom L, Blomberg J Abstract Myalgic encephalomyelitis (ME, also called Chronic Fatigue Syndrome), a common disease with chronic fatigability, cognitive dysfunction and myalgia of unknown etiology, often starts with an infection. The chaperonin human heat shock protein 60 (HSP60) occurs
- [Endogenous pain modulation in response to exercise in patients with rheumatoid arthritis, patients with chronic fatigue syndrome and comorbid fibromyalgia, and healthy controls: a double-blind randomized controlled trial](https://www.meresearch.org.uk/research/endogenous-pain-modulation/) - Authors Meeus M, Hermans L, Ickmans K, Struyf F, Van Cauwenbergh D, Bronckaerts L, De Clerck LS, Moorken G, Hans G, Grosemans S, Nijs J Institution Departments of Human Physiology and Rehabilitation Sciences, Faculty of Physical Education and Physiotherapy, Vrije Universiteit Brussel, Brussels, Belgium Objective Temporal summation (TS) of pain, conditioned pain modulation (CPM), and
- [Effect of intermittent vitamin D3 on vascular function and symptoms in chronic fatigue syndrome. A randomised controlled trial](https://www.meresearch.org.uk/research/intermittent-vitamin-d3/) - Authors Witham MD, Adams F, McSwiggan S, Kennedy G, Kabir G, Belch JJF, Khan F Institution Medical Research Institute, University of Dundee, Ninewells Hospital, Dundee, UK Publication Nutrition, Metabolism & Cardiovascular Diseases, 2015 Mar; 25(3): 287-94 Funding Funded by ME Research UK, grant number MERUK/2009/2. We acknowledge the financial support of NHS Research Scotland through
- [Increased vulnerability to pattern-related visual stress in myalgic encephalomyelitis](https://www.meresearch.org.uk/research/visual-stress/) - Authors Wilson RL, Paterson KB, Hutchinson CV Institution College of Medicine, Biological Sciences and Psychology, University of Leicester, UK. Abstract The objective of this study was to determine vulnerability to pattern-related visual stress in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). A total of 20 ME/CFS patients and 20 matched (age, gender) controls were recruited to the
- [Elevated brain natriuretic peptide levels in chronic fatigue syndrome associate with cardiac dysfunction: a case control study](https://www.meresearch.org.uk/research/elevated-bnp-levels-in-cfs/) - Authors Cara Tomas, Andreas Finkelmeyer, Tim Hodgson, Laura MacLachlan, Guy A MacGowan, Andrew M Blamire, Julia L Newton Institution Institute of Cellular Medicine, Newcastle University, Newcastle upon Tyne, UK Abstract Objectives To explore levels of the brain natriuretic peptide (BNP) and how these associate with the cardiac abnormalities recently identified in chronic fatigue syndrome (CFS).
- [IgG stimulated β2 adrenergic receptor activation is attenuated in patients with ME/CFS](https://www.meresearch.org.uk/research/adrenergic-receptor-activation/) - Authors Jelka Hartwig, Franziska Sotzny, Sandra Bauer, Harald Heidecke, Gabriela Riemekasten, Duska Dragun, Christian Meisel, Claudia Dames, Patricia Grabowski, Carmen Scheibenbogen Institution Institute for Medical Immunology, Charité University Medicine Berlin, Berlin, Germany Comment by ME Research UK The immune system continues to be a fertile area for research in ME/CFS, and a number of recent
- [Does acetaminophen activate endogenous pain inhibition in chronic fatigue syndrome/fibromyalgia and rheumatoid arthritis? A double-blind randomized controlled cross-over trial](https://www.meresearch.org.uk/research/pain-inhibition/) - Authors Meeus M, Ickmans K, Struyf F, Hermans L, Van Noesel K, Oderkerk J, Declerck LS, Moorkens G, Hans G, Grosemans S, Nijs J Institution Department of Human Physiology and Rehabilitation Sciences, Vrije Universiteit Brussels, Belgium Background Although enhanced temporal summation (TS) and conditioned pain modulation (CPM), as characteristic for central sensitization, has been proved
- [Contrasting chronic fatigue syndrome versus myalgic encephalomyelitis/chronic fatigue syndrome](https://www.meresearch.org.uk/research/cfs-versus-me/) - Authors Jason LA, Brown A, Evans M, Sunnquist M, Newton JL Institution DePaul University, Chicago, USA Background Much debate is transpiring regarding whether chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) are different illnesses. Several prior studies that compared the Fukuda et al. CFS criteria to the Canadian ME/CFS criteria found that the Canadian criteria
- [Comparing gene expression patterns in CFS and GWI using the Kerr ME/CFS Platform](https://www.meresearch.org.uk/research/gene-expression-patterns/) - Authors Garcia L, Kerr J, Fletcher MA, Sol C, Klimas N. Institution University of Miami Miller School of Medicine and Miami VA Medical Center, Miami, Florida, USA, and St George's University of London, London, UK Funding The study was funded by a research grant ME Research UK awarded to St George’s University, London. Publication Bulletin
- [Cognitive performance is of clinical importance, but is unrelated to pain severity in women with chronic fatigue syndrome](https://www.meresearch.org.uk/research/cognitive-performance-is-of-clinical-importance/) - Authors Kelly Ickmans, Mira Meeus, Daphne Kos, Peter Clarys, Geert Meersdom, Luc Lambrecht, Nathalie Pattyn & Jo Nijs Institution Pain in Motion Research Group (PIM), Department of Human Physiology, Faculty of Physical Education and Physiotherapy, Vrije Universiteit Brussel, Brussels, Belgium Abstract In various chronic pain populations, decreased cognitive performance is known to be related to pain
- [Clinical characteristics of a novel subgroup of chronic fatigue syndrome patients with postural orthostatic tachycardia syndrome](https://www.meresearch.org.uk/research/pots-clinical-characteristics/) - Authors Lewis I, Pairman J, Spickett G, Newton JL Institution Institute for Ageing & Health, Newcastle University, Newcastle upon Tyne, UK Objectives A significant proportion of patients with chronic fatigue syndrome (CFS) also have postural orthostatic tachycardia syndrome (POTS). We aimed to characterize these patients and differentiate them from CFS patients without POTS in terms
- [Characterising eye movement dysfunction in myalgic encephalomyelitis/chronic fatigue syndrome](https://www.meresearch.org.uk/research/eye-movement-dysfunction/) - Authors Badham SP, Hutchinson CV Institution College of Medicine, Biological Sciences and Psychology, University of Leicester, Leicester, UK Background People who suffer from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) often report that their eye movements are sluggish and that they have difficulties tracking moving objects. However, descriptions of these visual problems are based solely on patients'
- [Cerebral vascular control is associated with skeletal muscle pH in chronic fatigue syndrome patients both at rest and during dynamic stimulation](https://www.meresearch.org.uk/research/cerebral-vascular-control/) - Authors He J, Hollingsworth KG, Newton JL, Blamire AM Institution Institute of Cellular Medicine & Newcastle Magnetic Resonance Centre, Newcastle University, Newcastle upon Tyne, United Kingdom Abstract Cerebral blood flow (CBF) is maintained despite changing systemic blood pressure through cerebral vascular control, with such tight regulation believed to be under local tissue control. Chronic fatigue
- [Association between cognitive performance, physical fitness, and physical activity level in women with chronic fatigue syndrome](https://www.meresearch.org.uk/research/physical-activity-level/) - Authors Ickmans K, Clarys P, Nijs J, Meeus M, Aerenhouts D, Zinzen E, Aelbrecht S, Meersdom G, Lambrecht L, Pattyn N Abstract Limited scientific evidence suggests that physical activity is directly related to cognitive performance in patients with chronic fatigue syndrome (CFS). To date, no other study has examined the direct relationship between cognitive performance
- [Are myalgic encephalomyelitis and chronic fatigue syndrome different illnesses? A preliminary analysis](https://www.meresearch.org.uk/research/are-me-and-cfs-different-illnesses/) - Authors Jason LA, Sunnquist M, Brown A, Evans M, Newton JL Institution Center for Community Research, DePaul University, USA Abstract Considerable discussion has transpired regarding whether chronic fatigue syndrome is a distinct illness from myalgic encephalomyelitis. A prior study contrasted the myalgic encephalomyelitis International Consensus Criteria with the Fukuda and colleagues' chronic fatigue syndrome criteria
- [Can recovery of peripheral muscle function predict cognitive task performance in chronic fatigue syndrome with and without fibromyalgia?](https://www.meresearch.org.uk/research/cognitive-task-performance/) - Authors Ickmans K, Meeus M, De Kooning M, Lambrecht L, Pattyn N, Nijs J Institution Pain in Motion Research Group, Department of Human Physiology and Physiotherapy, Faculty of Physical Education and Physiotherapy, Vrije Universiteit Brussel, Brussels, Belgium Background Both good physical and cognitive functioning have a positive influence on the execution of activities of daily
- [Association between vitamin D status and markers of vascular health in patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)](https://www.meresearch.org.uk/research/vitd-status-and-vascular-health/) - Authors Witham M, Kennedy G, Belch J, Hill A, Khan F Institution Ageing and Health, Division of Cardiovascular & Diabetes Medicine, Ninewells Hospital & Medical School, University of Dundee, Dundee, UK Background Low circulating 25 hydroxyvitamin D (25OHD) levels have been associated with increased blood pressure, impaired vascular health and an increased risk of cardiovascular
- [Chronic fatigue syndrome versus sudden onset myalgic encephalomyelitis](https://www.meresearch.org.uk/research/cfs-versus-sudden-onset-me/) - Authors Jason LA, Evans M, Brown A, Sunnquist M, Newton JL Institutions Center for Community Research, DePaul University , Chicago , Illinois , USA; Institute for Ageing and Health, Newcastle University, Newcastle upon Tyne, UK Publication Journal of Prevention & Intervention in the Community, 2015; 43(1): 62-77 Funding This work was supported by the NIAID
- [Associations Between Cognitive Performance and Pain in Chronic Fatigue Syndrome: Comorbidity with Fibromyalgia Does Matter](https://www.meresearch.org.uk/research/associations-between-cognitive-performance-and-pain/) - Authors Ickmans K, Meeus M, De Kooning M, Lambrecht L, Pattyn N, Nijs J Institution Vrije Universiteit Brussel, Faculty of Physical Education & Physiotherapy, Brussels, Belgium Published abstract Background In addition to the frequently reported pain complaints, performance-based cognitive capabilities in patients with chronic fatigue syndrome (CFS) with and without comorbid fibromyalgia (FM) are significantly worse than those of
- [Cerebral blood flow and heart rate variability in chronic fatigue syndrome: a randomized cross-over study](https://www.meresearch.org.uk/research/cerebral-blood-flow-and-heart-rate-variability/) - Authors Anneleen Malfliet, Roselien Pas, Raf Brouns, Joris De Win, Samar M. Hatem, Mira Meeus, Kelly Ickmans, Robbert-Jan van Hooff and Jo Nijs Institution Department of Physiotherapy, Human Physiology and Anatomy (KIMA), Vrije Universiteit Brussel, Brussels, Belgium Abstract Background Pain, fatigue, and concentration difficulties are typical features of chronic fatigue syndrome (CFS). The exact underlying mechanisms
- [Antibodies to Human Herpesviruses in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients](https://www.meresearch.org.uk/research/antibodies-to-hhv/) - Authors Jonas Blomberg, Muhammad Rizwan, Agnes Böhlin-Wiener, Amal Elfaitouri, Per Julin, Olof Zachrisson, Anders Rosén and Carl-Gerhard Gottfries Institution Section of Clinical Microbiology, Department of Medical Sciences, Uppsala University, Uppsala, Sweden Abstract Myalgic encephalomyelitis, also referred to as chronic fatigue syndrome (ME/CFS) is a debilitating disease characterized by myalgia and a sometimes severe limitation of
- [A Cross Cultural Comparison of Disability and Symptomatology Associated with CFS](https://www.meresearch.org.uk/research/cross-cultural-comparison-of-disability/) - Authors Zdunek M, Jason LA, Evans M, Janice R, Newton JL Institutions Center for Community Research, DePaul University, Chicago, USA; Institute for Ageing and Health, Newcastle University, Newcastle upon Tyne, UK Abstract Few studies have compared symptomatology and functional differences experienced by patients with chronic fatigue syndrome (CFS) across cultures. The current study compared patients
- [Understanding the mechanism and role of autoimmunity in ME/CFS](https://www.meresearch.org.uk/research/prusty-070/) - Listen to this article Researcher Prof. Bhupesh Prusty Institution Riga Stradins University, Riga, Latvia Start date August 2025 Funding ME Research UK Background Our immune system is responsible for protecting our body from infections such as viruses and bacteria, recognising and destroying harmful substances from the environment, and combating changes in the body that can
- [Volunteering for ME research](https://www.meresearch.org.uk/research/volunteering/) - Two of the studies we support are currently looking for volunteers to participate in the research. Newcastle James Allison at Newcastle University is looking for people in the Northeast of England to take part in his ME Research UK-funded research to understand how the brain responds to pain in ME/CFS. In particular, he is looking
- [Genes involved in neurodevelopment are linked to ME/CFS](https://www.meresearch.org.uk/research/genes-involved-in-neurodevelopment-are-linked-to-me-cfs/) - Researchers Mauricio Arcos-Burgos, Jorge I Vélez, Mauricio Arcos-Holzinger, Claudio Mastronardi, Mario A Isaza-Ruget, Donald P Lewis, Hardip Patel, Brett A Lidbury Institutions Include: University of Antioquia, Medellín, Colombia; The Australian National University, Canberra, Australia Publication Diagnostics, 2025; 15(12):1542 Funding Funded by ME Research UK, with further support from the Harold Stannett Williams–Judith J Mason Foundation
- [Developing a diagnostic test for ME/CFS based on cell electrophysiology](https://www.meresearch.org.uk/research/cliff-073/) - Researchers Dr Fatima Labeed and Dr Jackie Cliff Institution Brunel University of London, UK Start date August 2025 Funding Joint funding from ME Research UK and the ME Association Background There is currently no widely available, accurate diagnostic marker for ME/CFS. However, growing evidence suggests that the electrical characteristics of white blood cells could form the
- [Holmes definition (CDC 1988) for CFS](https://www.meresearch.org.uk/holmes-definition-cdc-1988-for-cfs/) - The Holmes definition, published in 1988 for “research purposes,” is also known as the CDC 1988 criteria. It was the first official definition of chronic fatigue syndrome (CFS) used by the US Centers for Disease Control and Prevention (CDC). The CDC later adopted the 1994 Fukuda criteria for CFS then the 2015 IOM criteria for
- [Investigating the genetic and cellular clues to understand why ME/CFS affects more women than men](https://www.meresearch.org.uk/research/manousaki-fel001/) - Researcher Dr Alkisti Manousaki Supervisors Dr Yolanda Markaki and Dr Rachel Evans Institution University of Leicester Start date August 2025 Funding This project forms the basis of a Daphne Jackson Trust Fellowship jointly funded by ME Research UK and the Medical Research Council. The Daphne Jackson Trust is dedicated to supporting research returners. Dr Manousaki has a
- [Diagnosing ME/CFS](https://www.meresearch.org.uk/diagnosing-me-cfs/) - The NICE 2021 guideline for ME/CFS outlines the criteria necessary for diagnosing the disease. Officially produced for use in England, it was formally endorsed in Northern Ireland in 2022, and in 2025 the Scottish Government announced that this guideline would serve as “the default clinical guidance on ME/CFS” in Scotland. Additionally, in Wales, there is
- [Do microRNAs regulate platelet activation and metabolic dysfunction in women with ME/CFS?](https://www.meresearch.org.uk/research/annesley-069/) - Listen to this article Researcher Dr Sarah Annesley Institution La Trobe University, Melbourne, Victoria, Australia Start date June 2025 Funding ME Research UK Background Dr Annesley leads a research laboratory at La Trobe University where she researches neurological disorders including ME/CFS and long COVID. Her team looks at how energy is produced by immune cells,
- [NICE 2021 Criteria for ME/CFS](https://www.meresearch.org.uk/research/nice-criteria/) - In 2021, NICE (National Institute for Health and Care Excellence) published a guideline for diagnosing and managing cases of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This guideline replaced the NICE 2007 guideline, and key changes included: Recognition of post-exertional malaise (PEM) as a key symptom of ME/CFS. Graded Exercise Therapy (GET) no longer recommended. Cognitive Behavioural
- [Nightingale Definition for ME](https://www.meresearch.org.uk/nightingale-definition-for-me/) - The Nightingale Research Foundation is a Canadian non-profit organisation founded in 1988 by Dr Byron Hyde. It is named after Florence Nightingale, the renowned British nurse, who some speculate may have had myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) based on retrospective accounts – though the illness had not yet been defined during her lifetime. The Foundation
- [HERV activation distinguishes ME/CFS and fibromyalgia patient groups](https://www.meresearch.org.uk/research/herv-activation-distinguishes-me-cfs-and-fibromyalgia-patient-groups/) - Researchers Karen Giménez-Orenga, Eva Martín-Martinez, Lubov Nathanson, Elisa Oltra Institutions Catholic University of Valencia and Manises Hospital, Valencia, Spain; Nova Southeastern University, Fort Lauderdale, Florida, USA Publication eLife, 2025; 14:RP104441 Funding ME Research UK Key findings Human endogenous retrovirus (HERV) expression was assessed in immune cell samples from four groups of women: those with ME/CFS,
- [ME/CFS symptoms and comorbidities](https://www.meresearch.org.uk/me-cfs-symptoms-and-comorbidities/) - ME/CFS is a complex and debilitating disease which extends far beyond fatigue. It encompasses a wide range of symptoms, such as: cognitive dysfunction, sleep disturbances, gastrointestinal issues and sensory hypersensitivity. The cardinal feature of ME/CFS is post-exertional malaise (PEM), where even minimal physical or mental exertion can lead to a worsening of symptoms. Many individuals
- [Ramsay definition for ME](https://www.meresearch.org.uk/ramsay-definition-for-me/) - In 1986, Dr Melvin Ramsay, a British physician renowned for his research and advocacy on myalgic encephalomyelitis (ME), published Postviral Fatigue Syndrome: The Saga of Royal Free Disease (later titled Myalgic Encephalomyelitis and Postviral Fatigue States: The Saga of Royal Free Disease). The book documents cases of ME following various confirmed or suspected infectious outbreaks,
- [Living with ME/CFS](https://www.meresearch.org.uk/living-with-me-cfs/) - "Living with ME/CFS is unpredictable and exhausting. The symptoms – post-exertional malaise, brain fog, fatigue, pain, hypersensitivity, the list goes on – impact every aspect of life." Person with ME/CFS, 2025 ME Research UK-funded research suggests that in excess of 400,000 people in the UK have ME/CFS. This is more than the numbers of people living with HIV or multiple
- [What is ME?](https://www.meresearch.org.uk/what-is-me/) - ME or ME/CFS is a complex physical disease which affects many parts of the body and therefore causes a variety of symptoms, including intense fatigue and a feeling of being unwell which can be worse after physical or mental effort. Learn more about the disease using the links below.
- [ME/CFS: what's in a name?](https://www.meresearch.org.uk/me-cfs-whats-in-a-name/) - Is it ME, or CFS, or ME/CFS? Unfortunately, there can be confusion over what to call the disease because so many names have been used over the years. In common with many healthcare systems, healthcare professionals and researchers, as well as other charities, ME Research UK uses the term ME/CFS. This is because it causes
- [Possible causes of ME/CFS](https://www.meresearch.org.uk/possible-causes-of-me-cfs/) - Research has not yet been able to confidently determine the cause or causes of ME/CFS, but several factors associated with the disease have been identified. More research is required to determine whether these biological abnormalities are the "primary drivers of disease or secondary effects resulting in chronic illness". Infections Research suggests that infection with microorganisms
- [Managing ME/CFS](https://www.meresearch.org.uk/managing-me-cfs/) - There is no cure or treatment for ME/CFS, but there are approaches that can help people manage the symptoms of the disease, as recommended in the 2021 NICE guideline. The primary and most essential approach is an individual treatment plan, which considers the complex and fluctuating nature of the disease. Heathcare professionals ought to agree
- [The role of ME Research UK](https://www.meresearch.org.uk/the-role-of-me-research-uk/) - ME Research UK funds high-quality biomedical research into ME/CFS. It does this to find its underlying cause, to develop diagnostic tools and effective treatments, and ultimately to discover a cure. Thanks wholly to the support of our donors, we have provided over £4.5 million of funding for more than seventy research projects around the world.
- [What is ME/CFS?](https://www.meresearch.org.uk/what-is-me-cfs/) - ME/CFS is a complex physical disease which affects many parts of the body and therefore causes a variety of symptoms. ME/CFS is characterised by post-exertional malaise. This is a worsening of fatigue and other symptoms after even mild physical or mental effort, which may be delayed by hours or days, and which is not improved
- [New estimates of ME/CFS prevalence in the UK](https://www.meresearch.org.uk/research/new-estimates-of-me-cfs-prevalence-in-the-uk/) - Researchers Gemma Samms and Chris Ponting Institution University of Edinburgh Publication Samms, G.L., Ponting, C.P. Unequal access to diagnosis of myalgic encephalomyelitis in England. BMC Public Health 25, 1417 (2025). https://doi.org/10.1186/s12889-025-22603-9 Funding This project is funded by ME Research UK. Funding for access to data was provided by the National Institute for Health and Care
- [Fukuda criteria for CFS](https://www.meresearch.org.uk/research/fukuda-criteria/) - The Fukuda criteria are used for identifying cases of chronic fatigue syndrome (CFS) for research purposes. They are also known as the CDC 1994 criteria as they were developed in conjunction with the US Centers for Disease Control and Prevention (CDC) in 1994. Although the CDC has now adopted newer criteria, the Fukuda criteria are
- [International Consensus Criteria (ICC) for ME](https://www.meresearch.org.uk/research/international-criteria/) - Published in 2011, the International Consensus Criteria (ICC) is a set of diagnostic criteria used for identifying cases of myalgic encephalomyelitis (ME) for research and clinical purposes. Whilst based on the Canadian Consensus Criteria (CCC), significant changes were made to create a far more selective set of criteria. One interesting difference is the removal of the 6-month waiting period before
- [Canadian Consensus Criteria (CCC) and Revised CCC for ME/CFS](https://www.meresearch.org.uk/research/canadian-criteria/) - Published in 2003, the Canadian Consensus Criteria (CCC) is a set of diagnostic criteria used for identifying cases of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) for research and clinical purposes. It is also known as the clinical working case definition. In 2010, the CCC was revised to help clinicians and researchers better use the criteria and improve diagnostic
- [The connection between energy metabolism and immune regulation in ME/CFS](https://www.meresearch.org.uk/research/the-connection-between-energy-metabolism-and-immune-regulation-in-me-cfs/) - Researchers Jente Van Campenhout, Yanthe Buntinx, Huan-Yu Xiong, Arne Wyns, Andrea Polli, Jo Nijs, Joeri L. Aerts, Thessa Laeremans, Jolien Hendrix Institution Pain in Motion Research Group, Vrije Universiteit Brussel, Brussels, Belgium Publication Biomolecules, 2025 March 1; 15(3):357 Funding ME Research UK with the financial support of the Fred and Joan Davies Bequest, and Fonds
- [Alterations in the hippocampus in ME/CFS and long COVID](https://www.meresearch.org.uk/research/hippocampal-alterations-in-me-cfs-and-long-covid/) - Researchers Kiran Thapaliya, Sonya Marshall-Gradisnik, Natalie Eaton-Fitch, Markus Barth, Maira Inderyas, Leighton Barnden Institutions Griffith University and University of Queensland, Australia Publication PLos ONE, 2025 January 13; 20(1):e0316625 Key findings Brain scans from people with ME/CFS and those with long COVID were analysed to determine the volumes of different regions of the hippocampus. The hippocampus
- [IOM 2015 Criteria for ME/CFS](https://www.meresearch.org.uk/iom-2015-criteria-for-me-cfs/) - In 2015, the Institute of Medicine (IOM), now the National Academy of Medicine (NAM), published clinical criteria for diagnosing ME/CFS. According to the committee responsible, these criteria “focus more on the central symptoms of this disease than many other definitions” yet “are quite similar to the Canadian Consensus Criteria (CCC).” The committee also acknowledged that
- [](https://www.meresearch.org.uk/articles/) - @MEResearchUK We fund high-quality scientific research into ME/CFS Latest articles 2024/25 – Our Charity Year in Review – Introduction 2024/25 – Our Charity Year in Review – Informing 2024/25 – Our Charity Year in Review – Influencing 2024/25 – Our Charity Year in Review – Investing Could antibodies against EBV be mistakenly attacking the body
- [Hypothalamus connectivity in adolescents with ME/CFS](https://www.meresearch.org.uk/research/hypothalamus-connectivity-in-adolescents-with-me-cfs/) - Researchers Hollie Byrne, Sarah Knight, Elisha Josev, Adam Scheinberg, Richard Beare, Joseph Yang, Stuart Oldham, Katherine Rowe, Marc Seal Institutions Murdoch Children’s Research Institute, University of Melbourne, and others, Melbourne, Australia Publication Journal of Neuroscience Research, 2024 October; 102(10):e25392 Funding This study was funded by ME Research UK and the Judith Jane Mason and Harold
- [Tracking changes in the structure and function of the brain over time in ME/CFS](https://www.meresearch.org.uk/research/barnden-067/) - Listen to this article Researcher Associate Professor Leighton Barnden Institution Griffith University, Queensland, Australia Start date September 2024 Funding ME Research UK Background Many of the symptoms experienced by people with ME/CFS – including problems with concentration, memory, vision and heart-rate control – suggest abnormalities in the brain and nervous system. In fact, research has
- [Increased brain neurochemical levels in ME/CFS and long COVID](https://www.meresearch.org.uk/research/increased-brain-neurochemical-levels-in-me-cfs-and-long-covid/) - Researchers Kiran Thapaliya, Sonya Marshall-Gradisnik, Natalie Eaton-Fitch, Zeinab Eftekhari, Maira Inderyas, Leighton Barnden Institutions Griffith University and University of Queensland, Australia Publication American Journal of Medicine, 2024 April 6; Epub ahead of print Funding ME Research UK with the financial support of the Fred and Joan Davies Bequest Key findings Brain MRI scans from people
- [Increased TTMV9 virus levels in immune cells from people with ME/CFS](https://www.meresearch.org.uk/research/increased-ttmv9-virus/) - Researchers Karen Giménez-Orenga, Eva Martín-Martinez, Elisa Oltra Institutions Catholic University of Valencia and Manises Hospital, Valencia, Spain Publication Pathogens, 2024; 13(9):751 Funding ME Research UK Key findings Prof. Elisa Oltra and colleagues have published more results from their ME Research UK-funded study looking at the role of human endogenous retrovirus (HERV) in ME/CFS. They found
- [Insights from ME/CFS research that illuminate long COVID](https://www.meresearch.org.uk/research/insights-from-me-cfs-research-that-illuminate-long-covid/) - Researchers Sarah Annesley, Daniel Missailidis, Benjamin Heng, Elisha K Josef, Christopher W Armstrong Institutions La Trobe University, Macquarie University, Murdoch Children's Research Institute, University of Melbourne, Mercy Hospital for Women, Australia Publication Trends in Molecular Medicine, 2024 May; 30(5):443–58 Funding Sarah Annesley and Daniel Missailidis were supported by ME Research UK with the financial support of
- [Muscle microclots and microvascular pathology in ME/CFS](https://www.meresearch.org.uk/research/wust-068/) - Listen to this article Researcher Dr Rob Wüst Institution Vrije Universiteit Amsterdam, the Netherlands Start date July 2024 Funding ME Research UK Background Symptoms affecting the muscles are one of the key features of ME/CFS. Muscle pain, weakness and fatigue cause significant suffering, and can severely limit individuals’ day-to-day activities and quality of life. Furthermore,
- [Neurocognitive impairment in ME/CFS](https://www.meresearch.org.uk/research/authier-065/) - Listen to this article Researcher Professor François Jérôme Authier Institution Université Paris Est-Créteil, France Start date October 2023 Funding ME Research UK Background Cognitive problems are one of the most frequent and disabling symptoms associated with ME/CFS, and most people with the disease report memory and concentration difficulties. Several imaging techniques have been used to
- [The impact of ME/CFS on visual sensory processing and selective attention](https://www.meresearch.org.uk/research/barrett-phd005/) - Listen to this article Researcher Dr Douglas Barrett PhD student Anosha Altaf Institution School of Psychology and Vision Sciences, Leicester University, UK Start date October 2023 Funding ME Research UK Background People with ME/CFS often report problems with their vision, including visual overload, difficulties filtering relevant from irrelevant visual information (also called selective attention), and
- [Brain functional connectivity in people with ME/CFS](https://www.meresearch.org.uk/research/brain-functional-connectivity-in-people-with-me-cfs/) - Researchers Maira Inderyas, Kiran Thapaliya, Sonya Marshall-Gradisnik, Markus Barth, Leighton Barnden Institutions Griffith University and University of Queensland, Australia Publication Frontiers in Neuroscience, 2024 January 29; 17:1318094 Funding ME Research UK with the financial support of the Fred and Joan Davies Bequest Key findings Detailed MRI scans were used to investigate communication between different areas
- [Brain connectivity differences distinguish between two classes of ME/CFS](https://www.meresearch.org.uk/research/brain-connectivity-differences/) - Researchers Jiasheng Su, Kiran Thapaliya, Natalie Eaton-Fitch, Sonya Marshall-Gradisnik, Leighton Barnden Institution Griffith University, Australia Publication Brain Connectivity, 2023 April; 13(3):164–73 Funding ME Research UK funded Dr Su. The study was also supported by grants from various other research and charitable foundations. Abstract Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating disease with unknown
- [Persistent HERV expression in patients with post-COVID symptoms](https://www.meresearch.org.uk/research/persistent-herv-expression-in-patients-with-post-covid-symptoms/) - Researchers Karen Giménez-Orenga, Justine Pierquin, Joanna Brunel, Benjamin Charvet, Eva Martín-Martínez, Hervé Perron and Elisa Oltra Institution Universidad Católica de Valencia San Vicente Mártir, Spain Publication Frontiers in Immunology, 2022 October 27; 13:1020064 Funding ME Research UK Key points Human endogenous retroviruses (HERVs), which are contained within the human genome, may have a role in triggering diseases
- [Altered brain connectivity during cognitive exertion in long COVID](https://www.meresearch.org.uk/research/altered-brain-connectivity-during-cognitive-exertion-in-long-covid/) - Researchers Leighton Barnden, Kiran Thapaliya, Natalie Eaton-Fitch, Markus Barth and Sonya Marshall-Gradisnik Institutions Griffith University and University of Queensland, Australia Publication Frontiers in Neuroscience, 2023 June 22; 17:1182607 Funding ME Research UK with the financial support of the Fred and Joan Davies Bequest Key points This study was part of a larger research project using
- [Characterising the electrical properties of white blood cells to diagnose ME/CFS](https://www.meresearch.org.uk/research/dorey-066/) - Listen to this article Researcher Prof. Robert Dorey Institution University of Surrey Start date January 2024 Funding ME Research UK and the ME Association Background In 2019, Prof. Ron Davis from America reported that researchers had developed a nanoelectronics test that found a difference in impedance (i.e. the electrical characteristics) of white blood cells taken
- [Identifying viruses in tissue and nerve samples from ME/CFS patients](https://www.meresearch.org.uk/research/proal-059/) - Researcher Dr Amy Proal Institution PolyBio Research Foundation, USA Start date May 2023 Funding ME Research UK with the financial support of the Gordon Parish Charitable Trust Background It is possible that viruses associated with ME/CFS do not clear from patients after the initial infection, but remain in a persistent state. If that is the case, it
- [Searching for ME/CFS biomarkers in blood and cerebrospinal fluid](https://www.meresearch.org.uk/research/bertilson-063/) - Researcher Dr Bo Bertilson Institution Bragée Clinics, Sweden Start date April 2023 Funding ME Research UK Background The diagnosis of ME/CFS is severely hampered by a lack of clinical biomarkers. Biomarkers are measurable clues within the body that tell us about the presence of a disease, and can give information about disease progression. Identifying a valid biomarker
- [Investigating spinal nerve cell function and the serotonin system in ME/CFS](https://www.meresearch.org.uk/research/taylor-064/) - Researcher Prof. Janet Taylor Institution Edith Cowan University, Australia Start date June 2023 Funding ME Research UK, with the financial support of the Irish ME/CFS Association Background Along with fatigue and other symptoms, people with ME/CFS describe an increased effort to carry out physical activities, and some individuals have been shown to have reduced strength.
- [Exploring patterns of antibodies in moderate and severe ME/CFS](https://www.meresearch.org.uk/research/lacerda-061/) - Listen to this article Researchers Dr Eliana Lacerda & Prof. Geraldine Cambridge Institutions London School of Hygiene & Tropical Medicine & UCL, UK Start date May 2023 Funding ME Research UK Background People with ME/CFS have a bewildering array of symptoms accompanied by varying levels of severity and disease courses, so finding a focus for
- [Do gut viruses have a role in the development of ME/CFS?](https://www.meresearch.org.uk/research/carding-060/) - Listen to this article Researcher Prof. Simon Carding Institution Quadram Institute, UK Start date December 2023 Funding ME Research UK with the financial support of the Fred and Joan Davies Bequest Background Our gut is home to trillions of microbes, including bacteria and viruses, comprising the microbiome, which is vital for maintaining health through aiding
- [Using MRI to assess brain neuroinflammation and the lymphatic system in ME/CFS](https://www.meresearch.org.uk/research/shan-062/) - Listen to this article Researcher Dr Zack Shan Institution University of the Sunshine Coast, Australia Start date June 2023 Funding ME Research UK with the financial support of the Fred and Joan Davies Bequest Background Neuroinflammation occurs when the brain’s immune system is activated, and this is believed to play an important role in ME/CFS,
- [Links between mitochondrial function and the autonomic nervous system in ME/CFS](https://www.meresearch.org.uk/research/nijs-phd004/) - Listen to this article Researcher Prof. Jo Nijs PhD student Jente Van Campenhout Institution Vrije Universiteit Brussel, Belgium Start date October 2023 Funding ME Research UK with the financial support of the Fred and Joan Davies Bequest Background The mitochondria are often called the power plants of the body. These structures are found in every cell
- [Brain white matter changes not found in adolescents newly diagnosed with ME/CFS](https://www.meresearch.org.uk/research/white-matter-changes/) - Researchers Elisha Josev, Sarah Knight and colleagues, Murdoch Children’s Research Institute, Melbourne, Australia Publication Journal of Neuroscience Research, 2023 October; 101(10):1572–85 Key points While changes in the white matter of the brain (the part containing nerves) have been observed in adults with ME/CFS, they have not yet been investigated in children and adolescents with the
- [Ongoing project: Investigating spinal nerve cell function and the serotonin system in ME/CFS](https://www.meresearch.org.uk/research/taylor-064-info/) - Listen to this article Researcher Prof. Janet Taylor, Edith Cowan University, Australia Funded by ME Research UK, with the financial support of the Irish ME/CFS Association Background Along with fatigue and other symptoms, people with ME/CFS describe an increased effort to carry out physical activities, and some individuals have been shown to have reduced strength.
- [Ongoing project: Exploring patterns of antibodies in moderate and severe ME/CFS](https://www.meresearch.org.uk/research/lacerda-061-info/) - Listen to this article Researchers Dr Eliana Lacerda & Prof. Geraldine Cambridge, London School of Hygiene & Tropical Medicine & UCL, UK Funded by ME Research UK Background People with ME/CFS have a bewildering array of symptoms accompanied by varying levels of severity and disease courses, so finding a focus for research into the underlying
- [Ongoing project: Do gut viruses have a role in the development of ME/CFS?](https://www.meresearch.org.uk/research/carding-060-info/) - Listen to this article Researcher Prof. Simon Carding, Quadram Institute, UK Funded by ME Research UK with the financial support of the Fred and Joan Davies Bequest Background Our gut is home to trillions of microbes, including bacteria and viruses, comprising the microbiome, which is vital for maintaining health through aiding digestion, providing essential nutrients
- [Our projects](https://www.meresearch.org.uk/our-research/) - ME Research UK funds the work of a growing number of scientists in the UK and worldwide. Choose a category to read more about this research.
- [Ongoing research: Identifying viruses in tissue and nerve samples from ME/CFS patients](https://www.meresearch.org.uk/research/proal-059-summary/) - Researcher Dr Amy Proal, PolyBio Research Foundation, USA Funded by ME Research UK with the financial support of the Gordon Parish Charitable Trust Background It is possible that viruses associated with ME/CFS do not clear from patients after the initial infection, but remain in a persistent state. If that is the case, it is important
- [Ongoing research: Searching for ME/CFS biomarkers in blood and cerebrospinal fluid](https://www.meresearch.org.uk/research/bertilson-063-summary/) - Researcher Dr Bo Bertilson, Bragée Clinics, Sweden Funded by ME Research UK Background The diagnosis of ME/CFS is severely hampered by a lack of clinical biomarkers. Biomarkers are measurable clues within the body that tell us about the presence of a disease, and can give information about disease progression. Identifying a valid biomarker for ME/CFS could therefore

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