I have just found yet another book on ME, this time a novel written by a long-term sufferer. It's called "The State of Me". The ME Association describes it as 'a remarkable first novel... absolutely word perfect on neurological ME'. Yet the author has posted on her blog a review by a fellow sufferer which contains the following paragraph: 3/10 for the quality of the information given about M.E. It really was very poorly researched and almost entirely inaccurate. Almost all of the information given related to 'CFS' rather than M.E., and these are two very different entities".
I'm confused...whilst I personally wholly agree about the differences between these two illnesses that people are so happy to clump together, the author has had this illness since 1983 and felt that what she was actually doing was describing ME not CFS and that she had the experience and had done the research over so many years! I would expect this antagonism from non-sufferers but isn't it odd that this illness causes such conflicting views even amongst its' own people! No 2 sufferers have the same symptoms. Just because someone has had a different experience to you does not make their experience any less valid. Maybe if we cd all adopt that attitude to everything in life, the world wd be a far more reasonable and tolerant place to be in.
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Hey Susan, The reviewer has actually edited her review, it is less harsh in some ways, and she is still intent on describing it as 'a brilliant novel', but ends her review by saying my book will 'sadly probably do more harm than good'. I am baffled. But this is of course about the politics of the illness and not the actual illness. It seems more important nowadays to subscribe to certain advocacy groups and if you are not in absolute agreement you get shot down.
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