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.
Stranger and Stranger
Spring 2012 sees the official launch of the new ebook edition of Stranger and Stranger by Robert McMullen. It is the true story of an unlikely encounter in the extraordinary life of a young man diagnosed with ME.
It is 1999. E-mail is still an exciting novelty and the internet a new and mysterious place when Rob receives a message from an unknown woman. Rob is chronically unwell, while Rose lives on the other side of the country. But who is she? What does she want? And where is their friendship heading? Through a series of annotated e-mails, Rob narrates the true story of how their lives come together in a way that is funny, touching and completely unforgettable.
You can buy the ebook from Amazon, while the easiest way to find it in the Kindle store is to search for “Robert McMullen”. The new ebook edition includes an afterword in which the author writes candidly about his diagnosis for the first time. At least 30% of the purchase price of ebooks bought from Amazon will be donated to charities funding biomedical ME research, including ME Research UK. And you can follow author Robert McMullen on Twitter.
Voices from the Shadows
Voices from the Shadows is a compelling and intensely moving one-hour feature documentary in which the hidden voices of severely affected people with ME can be heard. It is an independent and self-funded project, and as the description explains, “It is an act of witness, supported by concerned professionals who illuminate an injustice hidden in our midst. We see for ourselves the love, integrity, determination and courage of the contributors as they bravely share their stories. These are stories of life and death and although difficult to believe in this day and age, they are true: they happened. There are many, many others that remain untold.
” Dr Montoya of Stanford Medical School has said, “I think the film was powerful and it should be actually part of medical curricula in medical schools in the US.
”
DVDs of this film are now available to order online, copies with educational and public screening rights are also available, and there have already been public screenings at a variety of locations at which this important film has been very well-received.
Lynnette’s year of marathons
Lynnette Messenger has made a dramatic decision: to turn 2012 into the “Year of Challenges” in the form of two half-marathons and one full marathon on behalf of ME Research UK. On 25th March, she takes part in the Brentwood Half Marathon which makes a circle from Brentwood to Blackmore and back. And on 10th June, she competes in the Southend Half Marathon, starting and finishing at East Beach Shoebury. But the greatest challenge is the London Marathon on Sunday 22 April 2012, when she joins thousands of runners at Blackheath, reaching the Mall in front of Buckingham Palace.
Lynnette’s Justgiving page for these events is open for donations, and as she says, “My niece and nephew suffer from ME – my nephew has suffered since he was 11 and my niece since she was 13 – and they both need full-time care. As well as being a personal challenge, in the Year of Marathons I am looking to raise as much money as possible for a charity that means a lot to me and my family.
”
Through Corridors of Light: Poems of Consolation in Time of Illness
This anthology, edited by long-term ME sufferer John Andrew Denny, is a poetic companion devised to offer support, encouragement and inspiration to those going through the journey of illness. Chosen by sufferers themselves, many of the poems echo the kind of thoughts and feelings that tend to preoccupy the seriously ill but are often difficult to put into words. Many people who recommended them spoke of how therapeutic it can be to give voice to one’s worries, fears, hopes and desires in the beautiful words of verse. Several of the poems are by fellow-sufferers from ME.
The book is divided into sections reflecting the path people commonly follow during their illness: beginning with the initial shock and realisation of sickness; then accepting their new situation; learning to be quiet and thankful for newly discovered blessings; finding consolation in the cycle of the seasons; discovering new inner resources of courage, resolve and hope; and taking comfort in spiritual contemplation.
The poems, written by poets both famous and unknown during their own times of crisis and overwhelming emotion, offer consolation by confirming and validating the reader’s experience of illness, illuminating the mind with rich visual and emotional imagery, and opening up new ways of seeing the world and ourselves. Above all, the poems have been chosen for their soothing qualities of harmonious language and rhythmic coherence which can begin to heal the trauma caused by illness.
“[A] wonderful book… These poems… reverse negativity and encourage joy
” – Action for ME’s InterAction magazine.
Royalties from sales of the book will be donated to ME Research UK. Copies can be obtained from bookshops or direct from the book’s support website Poems of Consolation during Illness.
Looking After Mum
Sarah Franklin’s book, “Looking After Mum”, tells the story of a 12-year-old child carer, Lucy Gosling, who is carer for her mum who has ME/CFS. All Lucy wants is to be like any other youngster — to go out with friends, go shopping and have sleepovers — but as she has to look after her mum, this is just a dream. Until one day, Lucy decides it is down to her to help her mum get better no matter what the cost. The story is written with humour, but has sad scenes at the beginning. It is also about child friendship, family love and single parenting — and it is based on the true story of Sarah and her daughter, and how they got their lives back, with Sarah going from not being able to walk to being able to lead as normal a life as possible, and walk for an hour and a half.
Sarah has been a children’s writer for twelve years, but “Looking After Mum” is her first fiction book for the 9 to 12-year age group. Of course, adults can read it too, and you can download the title as an ebook for approximately £4.00.
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.
