Anti-ME brigade play victim

On Friday morning, the BBC’s Radio 4 ran a feature on the supposed intimidation of scientists working on “chronic fatigue syndrome, also called ME” which is claimed to be driving people away from researching the field, and it featured interviews with Simon Wessely (the focus of much of the alleged intimidation), Esther Crawley (of AYME, and a Bristol paediatrician) and Charles Shepherd of the ME Association. A transcript of Wessely’s interview has been published on Facebook, and the interviews can be heard on the Today programme website here (available until next Thursday). Victoria Derbyshire featured the story on her show on Radio 5 Live (available until next Thursday) in which she interviews Dr Crawley, and there is also an interview with an ME sufferer, a man who became ill in an outbreak of enterovirus (Coxsackie B4) in Aberystwyth in 1989, extracted from it here. There is a response from a prominent ME researcher, Prof Malcolm Hooper, here. (More: Public Service.)

In Crawley’s interview with Victoria Derbyshire, she claimed that she and many of those doing the harassment have a very similar view of what ME is and what causes it, but that they insist on one particular answer and are harassing anyone whose research does not lead to it. This may be true of some people, but she also numbered complaints to the General Medical Council and ethics committees as a form of harassment, along with the so-called death threats (and neither of the emails she read out on air are explicit death threats; one of them concluded “you will pay”, but that could mean other things besides murder). The complaints to the ethics committees were against her proposal to trial the “Lightning Process” on children, which is a valid complaint given the wild claims the organisation behind this “therapy” make for ME, namely that it is a cure or relief for a huge range of very obviously physical conditions, among them hypothyroidism which is easily tested for and easily rectified with readily available tablets. I posted an entry on this ethical issue a year ago. The problem is that the criteria used do not isolate neurological ME but focus on fatigue, when the core feature of ME is neurological disturbance, part of which may be experienced as fatigue but it does not make fatigue, per se, an essential symptom of ME.

In Wessely’s interview on Radio 4, he made the bizarre claim that patients would prefer to be told they had an incurable viral illness than a psychological one:

Yes, certainly, you can feel almost the depths of the passion sometimes when generally people seem to prefer to be diagnosed with a, like a retrovirus, a potentially incurable maybe even fatal illness rather than an illness which, for which we do have some reasonable, but not perfect treatments. I think really a test to the strength of feeling here, I would rather have an incurable virus than a potentially curable disorder, if the cure or treatment involved any acknowledgement that it was social or psychological!

Of course, patients already know they have a physical illness. A well person would not be in their right mind to prefer an incurable retroviral illness to a psychological one that could be relieved through therapy, but these are not well people. That is the difference. There has been much research that demonstrates the existence of various pathologies in ME patients, and Byron Hyde noted in an interview with a Swedish ME organisation that he does not merely diagnose someone with ME but finds and diagnoses these pathologies. Many of them, such as connective tissue disorders, hypothalamic and pituitary dysfunction, osteoporosis and dorsal root ganglionitis, cannot possibly be psychological, and neither can the abnormal brain scans people with ME give. The viral origins of ME (particularly enterovirus as already mentioned) are already well-acknowledged, as are the serious viral infections ME sufferers are prone to, so there is no question of someone choosing to have a viral infection; they already have one.

Wessely (and a supporter who called into Derbyshire’s programme) argued that what he is advancing are management strategies and that patients should not turn their back on them “because of a belief that if I went down that route that would mean I was making all this up”. However, the patient community does not object to management strategies; they object to research money being directed towards them in preference to biomedical research, to management strategies being presented as cures, and to treatments which work for some fatigue disorders being presented as cures for ME. Many patients now have access to the internet and can share management techniques without always having to go to a professional CBT practitioner; a trip to a clinic cannot, in any case, always be justified for someone with fairly severe ME as the journey could make them more ill. I should add that Wessely has a long record of scepticism about ME itself as a physical illness; his disbelief was plainly stated in various speeches and articles in the early 1990s, although his rhetoric softened later, referring to “medically unexplained symptoms” and “perpetuating factors”, but still suggesting that a label lends the condition a legitimacy it does not deserve. The BBC did not take him up on any of this while interviewing him on Friday.

From my past experience, it seems that this tactic of holding up “death threats” is a way of presenting oneself as both victim and hero, a brave warrior taking on sinister, hidden forces. One South African newspaper that covered this story illustrated it with a picture of a soldier looking down the sights of a rifle. The same has, in the past, been true of people who are given a platform by the mass media to make broad, negative generalisations about certain minorities. The entire community is thus put on the defensive, encouraged to take its attackers’ side against the supposedly more extreme elements of their own. Judging by discussion among ME sufferers about this story I have read online, they are outraged by the spectacle of these people presenting themselves as victims when they have been left to suffer for years (in some cases facing disbelief and contemptuous treatment from doctors), some of which they could have been saved if research into the biomedical causes of ME had been done and a cure, or at least some form of treatment, had been found. This is the background to this story which was not discussed on Radio 4 on Friday. It is not a case of a movement of “crazy” ME patients sending out death threats to scientists who find what they do not want them to find.

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