Verity Red’s Diary – A Story of Surviving M.E.: Maria Mann

I only really got into this when she was given three kittens, Paddy, Murphy, and Mary, and began describing their antics. Having ME is rather boring – nothing happens, and improvement is so gradual as to be almost unnoticeable. Every person with ME has a different collection of symptoms to differing degrees, so I found it difficult to identify with Mann, whose condition is much worse than mine. She also suffered from the ignorance and prejudice of the medical world and family members, all of whom appeared to be quite sceptical and unsympathetic about her illness. This can be one of the most difficult aspects of ME, and quite why people suffering from this condition should be subject to such prejudice is difficult to understand. Anyone doubting the existence of this prejudice (coming from doctors and lay-persons alike) only needs to read relevant entries on the now infamous blog of the so-called “Dr Crippen”, a practising NHS doctor in the UK, and comments that readers have added on the topic.

Aside from all this, Mann has a whimsical and creative style which includes her quirky and funny poems, imaginary parties with pixies and dwarves, and odd-ball names for friends and local drinking establishments where her boyfriend disappears to on Friday nights. She has managed to find the humour in ME, in spite of it all, and this is what makes her story an enjoyable read. Her life, constrained by moderately severe ME, is described in every detail, sometimes minute by minute, as she struggles to wash a plate or get dressed. Her weekly visits to the osteopath and exchange of letters with friends provide an external view of her ordeal. If you have ME or know someone who has it, and enjoy this style of writing, then this would be an interesting book. If you’re looking for a traditional novel with gripping action and in-depth characters, then I’d look elsewhere.

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.