velo-gubbed legs

(velo = bike, gubbed = exhausted, velo-gubbed legs = the way your legs feel when you have M.E, as if you've been doing the tour de france, except you haven't been near a velo)
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What I like about The State of ME is that it is refreshingly free of cod-science.

Though notionally about “Helen”, Nasim Jafry’s carefully titled book is unashamedly autobiographical. It tells the story of a fit, intelligent modern languages student who, part way through her university course, is stricken with a chronic, disabling and undiagnosable illness. So often, books about myalgic encephalomyitis are written by the militant wing of the “ME brigade” and are angry, self-indulgent, outspoken and intolerant. One of the most eminent ME militants, and certainly one of the most preposterous proponents of cod-science, is “Jodi Hummingbird” (really) who believes that:

M.E. is similar in a number of significant ways to illnesses such as multiple sclerosis, Lupus and Poliomyelitis (polio).

the brain stem…is always damaged in M.E.

ME…is primarily neurological, but also involves cognitive, cardiac, cardiovascular, immunological, endocrinological, metabolic, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. M.E. affects all vital bodily systems and causes an inability to maintain bodily homeostasis.

causes a list of symptoms so numerous as to cover just about any serious illness you care to mention

...the hearts of M.E. patients only pump barely pump enough blood for them to stay alive. Their circulating blood volume is reduced by up to 50%.

A Hummingbirds’ (sic) guide to ME

I didn’t know that hummingbirds bark. Poor old Jodi. She doesn’t understand apostrophes either. Before I bought the State of ME, I read Jodi Hummingbird’s review. When Jodi isn’t barking, she is being a characteristic militant ME pompous git. You are not entitled to your opinion unless you agree with Jodi. Only Jodi understands ME and if you don’t agree with Jodi, she has no time for you. Heaven forbid that Nasim Jafy, who has suffered from ME for over twenty years, should have her own opinion.

3/10 for the quality of the information given about M.E. It was almost entirely inaccurate. Almost all of the medical information given related to 'CFS' rather than M.E., and these are two very different entities!

Jodi Hummingbird’s review of The State of ME

It is people like Jodi who give ME sufferers a bad name. Thank goodness there are some, like Nasim Jafry, who do not share her views. Nasim Jafry writes with wit and gentle good humour about her illness. It is a long illness and it is a long book, perhaps a little too long. She does not burden us with too many medical details. Her family doctor is none too sympathetic but then Helen/Nasim comes under the care of a sympathetic consultant, a rheumatologist I suspect. He takes Helen/Nasim through a number of treatments including plasmaphoresis and “kick the television” ACTH therapy. None of the treatments is successful. There is the suggestion that the “diagnosis” was made on the basis of a muscle biopsy. If only it were as simple as that.

Helen/Nasim is spared the endless suggestions of graduated exercise programmes that are now Nicely in vogue. Any doctor who is contemplating recommending such treatment to patients with ME would do well to read the State of ME first. It is far more persuasive than Jodi Hummingbird’s pseudo-science about cardiac output.

Those doctors from the Simon Wessely school of thought might well ask if Helen/Nasim was clinically depressed and thus might have benefited from treatment with anti-depressants. There is nothing to suggest that Helen/Nasim was depressed before the onset of the illness. Her account is transparently honest and convincing, and I do not believe that she is suppressing details of any pre-existing psychiatric condition. A more interesting question is whether, during the course of her illness, she develops a secondary depression which might have benefited from psychological or pharmaceutical intervention. I reached a conclusion on that. You must reach your own.

We must assume that Helen/Nasim was never offered CBT (thank God!). Maybe it had not been invented then. (It had, but it wasn’t trendy). She has a supportive family but she does not seem to have been offered outside psychological support and there is nothing in the narrative to suggest that she would not have accepted that sort of help or indeed any sort of help from someone sympathetic. She does dabble occasionally with the quacktitioners but to no avail.

The State of ME is also a story of young love told around an increasingly intrusive illness. Jafry’s account of Helen’s various relationships are, notwithstanding some self-consciously twee descriptions of oral sex, convincing and, like all good love stories, one wants to finish the book to see with whom, if anyone, Helen settles down. The end may surprise you.

There is so much about which Helen/Nasim could be angry and yet this book is free of anger and free of bitterness. It is a balanced, non-didactic account of a young person grappling with a dreadful illness. All doctors will benefit from reading the State of ME. It may make those doctors who are not "believers" pause awhile before calling in the psychiatrists.

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A list of NHS BLOG DOCTOR articles on myalgic encephalomyelitis may be found here