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Book launch to save life
Robert Saunders has been unwell for 15 years, often bedbound and housebound and hindered by people's misunderstanding of his illness.
But the 34-year-old is now going public about the debilitating condition that has changed his life beyond recognition since he was 19.
Robert, of London Road, Balcombe, has Myalgic Encephalomyelitis, more commonly known as ME. He believes research into the confusing disease could soon progress significantly with a blood test to diagnose it.
He said: "One researcher anticipates having a test within two years, which would be an enormous step forward."
More immediately, it means that Robert is willing to use his own name as the publisher of a book, all profits from which will go to biomedical research into ME.
He said: "I am cautiously optimistic that with greater physiological understanding more researchers can target specific areas and drug treatments and people, and hopefully the government, will be able to donate money towards research, knowing there is a better understanding where before there has only been psychological babble."
The book he is publishing, entitled 'A Stiff-Necked Generation - A Victorian Morality', is a novel written in 1920 by his great-grandfather A. Wyatt Tilby.
Writer and journalist Aubry Wyatt Tilby, like his great-grandson, was disabled by illness, in his case TB, and his novel remained unpublished during his own lifetime for fear of offending his family upon which it was based.
Robert traced the original manuscript to his maternal grandfather Hugh McMullen, who now lives in Balcombe, and who was the husband of A. Wyatt Tilby's late daughter.
In February 2006, Robert published his own novel, 'stranger and stranger', about a relationship between himself and a woman conducted entirely by email. But to avoid clouding readers' judgement by misinformation about ME, he used the pseudonym of Robert McMullen instead of his own name.
Robert, who is looked after at home by his parents, is now thinking of relaunching the book to again raise money for ME research.
He said: "It is a disgrace that, currently, there is no government money given to biomedical research into ME, despite it being estimated that the disease costs the country between 3billion and 6billion a year.
"It is not only a disgrace because of the suffering of individuals and their families but also from an economic position; it can't make economic sense not to be investing money to make those people better."
Robert has enlisted the support of MP Francis Maude who has tabled parliamentary questions on the lack of government funding into research. Mr Maude, whose Horsham constituency includes Balcombe, has also written to the Secretary of State for Health raising Robert's concerns.
A Stiff-Necked Generation by A. Wyatt Tilby (ISBN number 978-1-906146-10-8) is published through Four O'Clock Press at 6.99. It can be bought through bookshops and on online at Amazon. All profits will go to ME charities including ME Research UK (http://www.meresearch.org.uk) and CFS Research Foundation (http://www.cfsrf.com).
More information about the book can be found at www.awyatttilby.com and about stranger and stranger at www.strangerandstranger.net
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Saturday 26 May 2012
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