A little over a week ago I responded to accusations that people in the ME community were threatening scientists who were involved in “valuable” research into the cause and treatment of ME, because their results supposedly did not match what the “abusers” wanted. Since then, the Times has published a series of one-sided articles hostile to the ME patient community, including an ill-informed rant by Rod Liddle in the Sunday Times on 31st July, an article by David Aaronovitch comparing the call for more biomedical research into ME with anti-GM conspiracy theories, and finally (so far), last Saturday, an adulatory two-page feature on Simon Wessely. Hilary Johnson, author of Osler’s Web, published an article titled Cry Me a River, which ridicules the accusations of persecution published over a week ago.
Rod Liddle displays some very basic ignorance, and it is a mystery that the paper’s editors did not pick it up before publishing it. Surely, before an article is published on a scientific topic, it should be run past the science editor? Do they not have one? Liddle claims that Wessely “believes the illness, which results in debilitating tiredness, aches and pains and so on, probably has a neurological basis”, while his opponents insist that it is caused by a virus. This is simply not true. It is his opponents that regard it as both viral and neurological, while Wessely regards it as primarily psychological, i.e. “in the mind”. Neurological means a physical disturbance to the nervous system (which means the brain, spinal cord and peripheral nerves). How could they publish an article which contains such a basic scientific error?
In his opening paragraph, Liddle alleges that the ME Association “helps people suffering from what used to be known as ‘chronic fatigue syndrome’ but now, for politically correct reasons, is known as myalgic encephalomyelitis”. This is also simply untrue. The term myalgic encephalomyelitis was coined in the 1950s by senior doctors treating nurses who fell ill with it in London. They did not believe it was in any way psychological and believed that a virus was responsible. They initially called it benign myalgic encephalomyelitis, but as Dr Elizabeth Dowsett noted in an interview with Jane Colby in 1996, it was found not to be benign and the illness came to be known as ME. The term chronic fatigue syndrome was coined in the 1980s by the Centers for Disease Control in Atlanta, Georgia, and Hilary Johnson noted that the term was preferred because it did not indicate any viral etiology:
For the next several years the euphemistic, benign-sounding name suggested a trivial, volitional disability, one that could be shrugged off with vitamins, aerobic exercise, stress reduction, a good night’s sleep, or sheer willpower. … More profoundly, the name camouflaged the nature of the illness itself: the fatigue in “chronic fatigue syndrome” was merely a symptom and, compared to the neurologic dysfunction resulting from the structural damage to the brain in the early phases of the disase, a sometimes unimportant one at that. Diseases, after all, are not primarily identified and defined by universal qualities they share with other diseases but rather for the qualities that distinguish them.
Historically, the name myalgic encephalomyelitis is fairly specific and well-understood, while CFS means different things depending on who is using it: some use it to mean a principally psychological condition (like Wessely), while others use it to mean ME as a physical illness (their understanding is somewhat different to the British model of ME, uses a wider set of selection criteria, and is more likely to entertain autoimmune causes and a wider range of viral causes). There is some evidence the term ME has been used to mean something more akin to CFS, and inappropriate treatments prescribed accordingly: the graded exercise treatment prescribed to Lynn Gilderdale in 1992, who had been diagnosed with ME and not CFS, being a classic example; she became progressively sicker and more disabled while taking the therapy, not less.
Liddle then brings up Wessely’s complaint that patients are more keen to be diagnosed with “some sort of weird retrovirus” than “a neurological disorder for which there is at least a form of palliative treatment” (again, confusing neurological with psychological). There is nothing weird about it; it is a retrovirus, like HIV and the HTLV viruses which are associated with some forms of leukaemia, but one must ask why the British media are so reluctant to even mention XMRV. As for the patients, they are already physically ill, and want to know which agent causes their illness so that some treatment can be developed for it, not so that they can just stay sick. The reports seem to make out that everyone in the ME community is clinging onto XMRV as if it was the only hope; this is true of a lot of people, but there are other avenues of exploration including enteroviruses (which are particularly relevant to outbreaks of ME) and herpes viruses.
He further alleges that “some sufferers cling with grim and livid determination to a non-existent biomedical explanation; they assume, one supposes, that if it is primarily a mental condition then they have sort of brought it on themselves, and are in some way to blame for their affliction (which is a nonsense, of course)”. This conveniently ignores the reality some ME sufferers face, which is precisely of being accused of faking or causing their illness, or that their parents caused it or facilitate it. True, mental illness is not generally thought to be the patient’s fault, although some recreational drugs play a part, but people with ME are often not treated as either mentally or physically ill people normally are, but as malingerers or people who can make their illness better themselves, despite ample physical evidence to the contrary.
Liddle finally compares the attitude of the ME community to “the reaction of some parents with autistic children who resist with fury the suggestion that this distressing condition might have been brought about partly as a consequence of assortative mating, as suggested by Prof Simon Baron-Cohen, rather than through mercury floating around in the atmosphere or the water pipes, or indeed the MMR vaccine”. Yet another example of gross ignorance on his part. There is so much criticism of Baron-Cohen’s methodology beyond this; the fact that he dabbles in genetics for the purpose of his pop psychology books rather than having actual expertise in it, makes bizarre leaps of logic and cites myths in support of serious propositions, and emphasises autism as an “extreme male brain” rather than as a disability. I dealt with this in a recent entry, and there has been much comment from actual autistic people as well as parents. He occupies a similar position in the world of autism to Wessely’s in ME: a first person to call for the media, yet heavily criticised in the community they think he represents.
The interview with Simon Wessely is extraordinary in what it leaves out. The interviewer, one Stefanie Marsh, does not consider for a moment the possibility that criticisms of Wessely have some basis; she claims that although he is “the most hated doctor in Britain”, he is hated not by his peers nor “by the thousands of patients he has helped to treat throughout his career”, but by people who have never met him but rather work on the basis of what others have written about him. He is, she says, “Britain’s foremost authority on ME, or chronic fatigue syndrome (CFS) as it is also known”:
It is quite possible that without his research people struck down by the illness would still be objects of ridicule, regarded as victims of some sort of self-imposed dosser’s depression. For it was his research that proved ME was not, as the general public, many doctors and certainly all employers once imagined, “yuppie flu”.
All utterly ridiculous. ME was not called “yuppie flu” until the media (specifically, Newsweek) invented the term in the late 1980s. Until then, ME was regarded, by those who had heard of it, as a neurological illness, albeit one that occurred in small outbreaks, mostly in tight-knit communities and in hospitals.
He discovered that by combining cognitive behavioural therapy and light exercise a third of patients make a full recovery.
Before his work, the standard treatment for ME was rest, with the result that many patients were left incapacitated. Many health professionals agree that he has done more for the sufferers of ME than any other individual, not just in Britain but worldwide.
The “third of patients” would be those who do not have ME but have some fatigue syndrome or another, possibly as a part of depression. Those with ME who have tried GET reported that it did not work or was harmful. Numerous surveys of patients with ME show this, as well as a welter of individual patient reports. Cases of ME patients collapsing when trying (often on doctors’ orders) to exercise more than they are able to are legion — here (reproduced here). The statement — “the standard treatment for ME was rest” — is an oversimplification, in any case; the treatment was, and remains, appropriate pacing of activities and rest, and not over-exerting oneself, which to the very severely affected may mean rest most of all of the time, but not for those with moderate ME. As for why “the people who loathe him — so much that they often send him threatening letters wishing him dead — are themselves incapacitated with ME”, this may be because they became more incapacitated by following graded exercise programmes that were inappropriate, or tried to “pull themselves together” when a doctor told them they were not ill, or only trivially so.
The sycophantic interview allows Wessely to claim persecution yet again, and to allege that “it’s just because I is a psychiatrist” without asking why ME sufferers are resistant to psychiatric involvement, and the reason is that patients have suffered such harm and abuse in the past, during the time of Wessely’s involvement. He claims that he is accused of throwing a boy into a swimming pool; this happened to Ean Proctor in the late 1980s and was in fact not Wessely’s own doing, but happened after Proctor was sectioned (committed) by Wessely (for more on that incident, see here and here). Psychiatric hospitals do cater for patients with conditions other than organic psychiatric disorders like schizophrenia, including some with autism when their condition cannot be managed in the community, but psychiatric units have proven themselves, time and again, inappropriate places for people with ME and particularly severe ME. Furthermore, psychiatrists and even other types of doctor are often enthusiastic to rule out or overrule diagnoses of ME or CFS and substitute “pervasive refusal syndrome” in children, or school phobia, or some other psychological cause. Sufferers also sometimes face perverse disbelief, such as the attempt by doctors in Sussex to blame Lynn Gilderdale’s skin disorder (which was in fact ringworm, acquired from her cat) on “dermatitis artefacta”, or self-inflicted skin damage; the fact that she had been diagnosed with ME automatically led them to assume that her complications were self-inflicted or psychological. The problem is simply that many doctors simply do not believe in ME, and the role of Wessely in this is worth examining since he is quoted as saying, in the early 1990s, that ME simply a belief that one has ME. The interviewer did not put any of this to him.
Nor did the interviewer put to him the matter of the range of pathologies which have been found in ME sufferers and particularly those wtih severe ME, none of which can possibly be in the domain of psychiatry: the fact that brain injury can be found on SPECT and PET scans, as Byron Hyde describes it, “as if a cobweb has been thrown across the brain”; Dr Hyde noted that there was measurable brain dysfunction in his ME patients as well as shrunken thyroid glands, abnormally high rates of thyroid cancer, cardiovascular disease (“which we do [find] all the time”), oligoclonal banding similar to what is found in MS patients, and connective tissue disorder similar to Ehlers-Danlos disorder.
It is not as if the very real physical effects of ME, and particularly severe ME, are not known to the media, a year and a half after the Gilderdale case made it public knowledge in a way it had not been before, and just four months after Kay Gilderdale’s book was published. The Times reported on the case, as did the rest of the British media, so they have no excuse whatsoever for not even mentioning it to Wessely during this interview, nor asking how his psychological theories, or “a cultural phenomenon”, might account for a condition as severe as hers. It is, of course, proper that Wessely should be allowed to state his opinion, but little airing has been given to his critics, who are not all conspiracy-minded lunatics but include doctors and other professionals, patients as well as advocates who have a long experience of the condition. There is no balance here; a whole wave of stories has suggested that the patient community as a whole has an irrational hatred of those who try to treat them, which is not the case. The general ME community feels that Wessely has a lot to answer for, and he was not expected to answer for any of it in that interview. As for the matter of his likes giving up their “research”, I’m sure many ME patients and advocates would appreciate it if Wessely would leave them and their illness alone.
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