Tuesday, March 17, 2009

Recovery from CFS: 50 personal stories
Compiled and edited by Alexandra Barton

My biggest problem with this book is that the editor is disingenuous in the way she uses the terms ‘ME’ and ‘CFS’ interchangeably. There is no differentiation in the book between ME and CFS; indeed, the controversy over labelling the neurological disease ME is completely ignored. ME is a distinct, well-defined, neurological disease classified by the WHO (ICD-10 G93.3) which can be diagnosed using specific scans (see http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf). CFS (chronic fatigue syndrome), however, refers to a collection of symptoms and by definition is not a specific illness.

The majority of general practitioners and other medical personnel do not understand the distinction between ME and CFS; indeed, thanks to a deliberate policy of mis-labelling, most people are unaware that ME is a distinct and clearly defined disease. The reasons for this are clearly explained by Jodi Bassett in her article “Who benefits from 'CFS' and 'ME/CFS'?” which can be found at: http://www.ahummingbirdsguide.com/whobenefitsfromcfs.htm
One result of this failure to clearly differentiate between ME and other un-diagnosed health problems with fatigue as the primary symptom (please note: fatigue is NOT the primary symptom in ME) is that people are often diagnosed with ME when they do not have ME, and others are diagnosed with CFS, which cannot be an actual diagnosis because there is no disease “CFS” – it is merely a collection of symptoms. All of which brings me back to the book in question: it is clear that some of the contributors suffered from illness and problems that have caused the symptom of chronic fatigue, but that they probably did not have ME, even when the contributor describes him or herself as having had ‘ME’. Therefore the book cannot be seen as referring only to ME cases; it clearly refers to a mix of ME and other illnesses which have chronic fatigue as a symptom (among a variety of other symptoms). Although the title only refers to ‘CFS’ (possibly to head off complaints such as mine!) the two terms are used interchangeably elsewhere throughout the book – and on the back cover.

The book is also in need of a good edit and more meticulous proof reading before the next edition comes out!

Having got all my criticisms out of the way, here’s what I do like about the book. It offers some hope to people with a range of health problems, including ME. It is empowering to learn that some people do recover. Before reading the book I had come to a point where I accepted that I had ME, that I would probably always have it, and that I simply had to learn how to live with it as best I could. Since reading the book I’ve picked up my research tools once again, and have begun exploring all the internet links provided in the book, and indeed have moved on way beyond the information provided. I’m currently looking into the link between ME and Lyme disease, which is not mentioned in the book. One type of treatment unfortunately not mentioned in the book is lymphatic drainage, practiced and taught in the UK by R. Perrin, an osteopath. It would have been interesting to read the stories of those people who’ve been treated by Perrin.

The book is a useful starting point for people who have been given the catch-all chronic fatigue diagnosis. I do not, personally, agree with the ‘miracle cure’ stories – I suspect that these people did not actually have ME. At present there is too little research done on ME, and the research that exists appears to be ignored by medical practitioners such as those in the UK who are responsible for the NICE guidelines on ME. One day there will be an explanation for the cause of this organic, neurological illness, and one day we will know what the most appropriate treatments are. I just hope it’s in my lifetime.

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