Daily Mail doctor notices sky is blue

This actually happened a couple of months ago, but I thought I’d comment on it now since it appeared again in Invest in ME’s August newsletter (top article): a doctor named Martin Scurr who has written a medical column in the UK Daily Mail for years has finally, after attending IiME’s conference in May, admitted that he was wrong in having “blamed ME on psychological or behavioural causes” and that it was actually a genuine physical disease. The article can be found here (at the bottom of an article on piles) and it’s illustrated with a stock “sleepy woman” picture (with the same lighting fail as in the picture accompanying the article I commented on here) rather than one of any number of readily-available pictures of real ME sufferers. While it’s good that one prominent doctor has admitted that this illness is real, it’s ridiculous that they remained sceptical for so long when there always had been plenty of evidence of a physical cause. (More responses here.)

I don’t doubt that the average GP sees plenty of patients with niggling problems (including fatigue and pain) which may well be the result of having anxieties or an unsatisfying life, probably far more than they see of actual cases of ME. Recently a book was published, Confessions of a GP by Dr Benjamin Daniels, a pseudonymous GP working in the British NHS, in which there was a chapter called “Shit Life Syndrome”, about a single mother living in a smoke-filled council house with three children, diagnosed with fibromyalgia and who kept begging him for something to treat her pain. Daniels is convinced that fibromyalgia is a dustbin diagnosis and says he has never seen a case of it which wasn’t connected to having a crappy life. Ultimately, this woman got a prescription of morphine from another doctor at the practice. Daniels didn’t mention ME in his book (as far as I could tell), but it begs the question of whether he can distinguish “shit life syndrome” from M.E. Many patients who really have M.E. didn’t have shit lives before they had M.E., but medical staff used every means at their disposal to put their condition down to school phobia, bullying, sexual abuse and pretty much any other non-medical problem, and to force them to admit that they weren’t ill.

I recently brought up ME in a discussion on the Muslim forum DeenPort, in the context of a discussion on some formerly high-profile Muslim bloggers leaving Islam. I mentioned that, if a friend seems to have dropped off the face of the earth, they might actually be ill rather than just not want to come to the mosque anymore, and mentioned ME since it was my particular interest and because it can take someone out of circulation for years. I mentioned that a Muslim lady I used to know through online forums had told me she had ME herself (a mild case of it) and had not received much sympathy from the community, including from a Muslim female GP. A doctor named Mushtaqur Rahman responded:

It’s an ill-defined condition and it is important to know this as people want to have a physical diagnosis. We get people with chronic fatigue syndrome looking for an endocrine diagnosis and there is usually no endocrine problem. Often people don’t want to accept a psychological approach to their condition, but of course a physical cause needs to be ruled out. I don’t get involved once there is no endocrine disorder.

The name Myalgic Encephalomyelitis suggests that it’s principally a neurological disorder, not an endocrine one, although research suggests that it’s caused by an auto-immune reaction to a viral infection. CFS may be an ill-defined condition but ME certainly isn’t (it was defined in the UK and by the WHO long before the notion of “chronic fatigue syndrome” became known of in the 1980s), and it’s disturbing that doctors don’t know the difference as someone’s — possibly a child’s — long-term health can depend on it. If someone presents with an acute case of ME, it’s vital that their doctor knows what is up, because advice to “keep active” can result in a drastic deterioration that at worst can lead to a patient becoming bedridden, quadriplegic or both within a matter of months.

But even if it were psychological, it wouldn’t justify the brutality meted out to those suffering from it. One might consider the story of the Kuomintang General’s Daughter in a book called The Good Women of China by former radio presenter Xinran, published in 2003. The general’s daughter, who had been left on the mainland after her father fled to Taiwan during the civil war, was tormented and repeatedly raped after villagers worked out that the man sheltering her could not be her real father, and when she revealed who, and where, her real father was, the entire family was persecuted. When Xinran encountered her, she was catatonic and unresponsive. I have heard of a woman from Zimbabwe, who witnessed horrific things during the Rhodesian period, spending decades in a similar state. A psychological state resulting in total paralysis, or a condition like that exhibited by Lynn Gilderdale in mid-1992, could not be from anything trivial, so how does any psychological theory justify such brutality as Lynn, Ean Proctor, Sophia Mirza and others encountered? On the other hand, while ample testimony about Lynn Gilderdale, for example, shows that she very much enjoyed life (and school) before she was ill and that people with ME are not just malingerers who cannot deal with life, where does that leave those who do have difficulties at school, or are in a difficult marriage, or have suffered some trauma or other, and coincidentally get ME?

The proof that ME is not psychological has been ample all along. The illness was just not that common until the 1980s, but as Jane Colby wrote in ME: The New Plague in 1996:

How is it we could think that pain and severe disability is such a desirable state to be in that thousands of children all over the country would choose, quite independently of one another, to invent it? How could sane adults imagine that children want to sit in a wheelchair when they might be running around with their friends?

She also notes that the symptoms of ME are quite recognisable to those familiar with polio and particularly the post-polio symptoms which are now blighting the lives of recovered polio sufferers from the 1950s (Joni Mitchell and Neil Young are famous examples). The viruses detected in the bodies of those who fell victims to past outbreaks of ME were enteroviruses, related to polio, and this persists in a fairly large percentage of ME sufferers today. Dr Benjamin Daniels suggests that one day some virus might be found to be the real cause of fibromyalgia or “shit life syndrome”, but would doctors even believe it? Reading this made me think that he had finally admitted that the sky was blue, since that has been quite obvious for a long time as well. I never had any doubt about the subject since seeing Lynn Gilderdale on Frontline in 1993, and had I ever darkened the door of a medical school, would have asked anyone who tried to tell me otherwise about how such a condition could be psychological.

(I’m not sure how significant this is as regards the Daily Mail itself; how much has Dr Scurr written on ME before this admission? The Mail has vacillated on the subject, sometimes printing highly sympathetic articles about the Gilderdales and Sophia Mirza and at other times running phone polls asking “is ME real?” and headlines about “yuppie flu” (on an article about Lynn Gilderdale, no less). I do not actually think the Mail cares about whether it’s real or not. It remains a source of crass headlines and touching human interest stories about “their kind of people”: middle-class white people and particularly women. If the Gilderdales had been black and lived on a council flat in south London, it’s quite unlikely that the Mail would have run any stories about them at all.)

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