Fundraising and other events
There are many ways you can help raise funds for ME Research UK. Please have a look at all the events on this page for ideas, and consider sponsoring some of our other friends.
Sponsored events are very popular, and if you are considering taking part in one you can use Justgiving to raise money quickly and easily online with your own personalised web page. To set up your page visit the Justgiving ME Research UK entry portal, or call Justgiving on 0800 028 6183 for more details.
Click here to read about other recent events.
We are very grateful for all the valuable support provided by the friends of ME Research UK.
Celebrity auction
WAMCARE, the Worldwide Association for ME/CFS Awareness and Research, has managed to amass a huge collection of celebrity memorabilia and signed photographs for auction on eBay, and, as WAMCARE president Laura Dunks says, “All profits will go straight to top quality research into ME/CFS
”, including a good share towards the work of ME Research UK.
Items for auction include DVDs of the popular BBC television show Merlin, signed by members of the cast; clothing worn on soap opera Coronation Street; a signed Katie Melua CD; and signed photos of David Attenborough, Matt Lucas and David Walliams, Helen Mirren, Jamie Oliver, and many more. These will be auctioned a few at a time on eBay, and the start of the auction will then be announced on the WAMCARE blog.
You can see a full list plus photos on the WAMCARE website, and more items will be added over the next few weeks. So if you fancy snapping something up and helping ME research at the same time, keep an eye on the blog.
ME SMEA’s Colouring Book 2009
ME-CFS Info, the website which publishes information and news about ME and CFS in Denmark, has just produced a lovely colouring book. The book, which can be freely downloaded from their website, has been created by Vivian and Frederikke Hvenegaard and tells the story of SMEA, the little forest slug who lives in a big and beautiful tree in the wood called Slugwood.
As SMEA says, “I have been affected by ME for quite some years now and I’ve still not recovered, but I’m certainly better now than I was years ago… Please come into the wood with me and see how we live…
” SMEA’s Colouring Book, Visit ME, is dedicated to children with Myalgic Encephalomyelitis - Post Viral Fatigue Syndrome - Chronic Fatigue Syndrome (ME/CFS, G93.3) and to children who know somebody suffering from this severe disorder. The name SMEA was formed from the initial letters of the four youngest ME children diagnosed with ME in the Danish ME/CFS Association back in the late 1990s.
Lost Voices from a Hidden Illness
The book Lost Voices, published in 2009, represents a very valuable contribution to the knowledge base about the lived experience of ME. Complied, edited and designed for Invest in ME by Natalie Bolton, the book is high-quality, A4 landscape size with a laminated card cover with pictures, mostly in colour, and has been written primarily by people affected by severe ME — whether as sufferers, carers or families.
As the publicity explains, “The title Lost Voices refers both to the fact that people who are severely ill with ME are generally not in a position to make themselves heard, and also to the way that the prejudiced denial of ME — as an ‘aberrant belief’ rather than a devastating physical illness — has meant that often others are incapable of actually hearing and seeing what is being said and shown… It does not just tell one person’s story or even one family’s story; Lost Voices brings together and shares the stories of many different individuals, families, carers and friends; each story unique, each story providing an insight into a world that has been invisible to most people for far too long. Anyone who has suffered from or is still fighting ME/CFS will find Lost Voices a powerful and uplifting reminder that they are not alone, that there are so many others like them, fighting for recognition, fighting for understanding and fighting for fair and effective treatment. This is a book full of love, courage, hope and determination.
”
The publication also contains a section of informative material on ME/CFS written by a variety of professionals, such as Dr Leonard Jason and Dr John Chia. Among these contributions is an essay by ME Research UK chairman, Dr Vance Spence, who writes, “Reading the stories in this valuable collection reminded me of the words of the Chief Medical Officer’s report on ME/CFS of 2002 that the ‘severely ill are severely overlooked; just ignored and invisible’. In practical terms this means that the most severely affected patients are often disenfranchised from the health care system. The condition continues to be shrouded in mystery and metaphor and many of the sickest patients rarely see a nurse or doctor; a situation that is surely unique, and disgraceful. Six years on from this report, little has changed; the condition remains invisible to all except the immediate family, largely unnoticed by health care professionals and, most importantly, the biomedical research community.
”
Copies of the book can be ordered from Invest in ME, which is encouraging supporters to sponsor a copy of the book for distribution to as many MPs, GPs, healthcare staff and media professionals as possible.
A Stiff-Necked Generation: A Victorian Morality by A Wyatt Tilby
A Wyatt Tilby (1880–1948) was a journalist and author of history and philosophy by profession. “A Stiff-Necked Generation”, written in 1920 during a period of convalescence from presumed TB, was not published during the author’s lifetime for fear of offending his family upon which it is based. Spanning three generations, the picture he paints is of a disharmonious family, blighted by sibling rivalries and philosophical differences. In particular, he contrasts his own passion for learning and experience with his uncle’s lust for money and power.
Set predominantly in Victorian London, moving through Holborn, Tooting, Wimbledon and Shoreditch, this beautifully written autobiographical novel offers a rare and authentic insight into a bygone age and the enduring nature of the human condition. Safe in the knowledge that all those referred to in the novel have long since departed, it was agreed by all the inheritors of the author’s estate that the time was now right for his only known work of fiction to be published.
The 200-page paperback, published by Four O’Clock Press is now available via the A Wyatt Tilby website or from Amazon for £5.94, and the press release can be read here (pdf 177 KB). It is published by Tilby’s great-grandson, Robert Saunders, through Bookforce.co.uk, and all the profits from the sale of this book will be donated to biomedical research into ME. Robert has been severely affected by ME for most of his adult life, since 1992. The supported charities will include ME Research UK and CFS Research Foundation.
The book was given a very positive review in February 2008 by Rosemary Goring, Literary Editor of The Herald, Scotland’s leading quality daily newspaper with which A Wyatt Tilby had a thirty-five year association as a reviewer, special correspondent and (from 1944) a leader-writer.
