From The Sunday Times, 31 July 2011 (comment piece by Rod Little)
Shoot the medical messenger – see if that’ll cure you
Medical experts who put forward controversial ideas should investigate their theories and not give in to ‘extremist' sufferers
They are hopping up and down with fury at the ME Association, the organisation that helps people suffering from what used to be known as “chronic fatigue syndrome” but now, for politically correct reasons, is known as myalgic encephalomyelitis.
Actually, I say they’re hopping up and down, but given the nature of their affliction, they’re probably sitting quite still, really. I meant hopping up and down as a figure of speech. Either way, they’re very angry. The problem was an interview on the BBC Today programme with a leading researcher into the causes of chronic fatigue syndrome, Prof Simon Wessely.
He believes the illness, which results in debilitating tiredness, aches and pains and so on, probably has a neurological basis.
As a consequence, he has received menacing phone calls and even death threats from “extremist” ME sufferers. So too has another researcher, Prof Myra McClure, who says she will now have nothing more to do with the whole business because she’s fed up with being abused.
It seems that those who suffer from ME, which used to be known as yuppie flu, do not wish to be stigmatised as malingering mentals, which is what they fear will happen if the illness turns out to have a psychiatric rather than biomedical basis.
On the ME Association website they don’t actually threaten to kill Wessely; instead you are left with the impression that he is pursuing this line of inquiry for mysteriously infernal purposes, and that he knows nothing about anything, and that he is part of a conspiracy with the whole psychiatric profession and the Today programme, especially Sarah Montague, and the government to cover up the real truth about chronic fatigue syndrome.
Indeed, such is the foaming paranoia on this site that you begin to suspect that if ME does have a neurological basis, it’s probably going to be the least of their mental worries.
The truth about ME, they assert, is that it is the consequence of some sort of weird retrovirus. In other words, it’s a proper illness, which we’ve caught from someone or something; it’s been given to us, it didn’t originate with us.
It is a peculiar and distressing, if not untypical, reaction from people faced with a mysterious and incurable disease. As Wessely himself says, in blank incomprehension, they would rather the disease be the consequence of a retrovirus that could possibly be fatal than be the result of a neurological disorder for which there is at least a form of palliative treatment.
No matter what evidence is marshalled by the likes of Wessely, 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).
Their denials and paranoia remind me a little of 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.
The now wholly discredited MMR theory certainly served the psychological requirements of some unhappy parents, being not merely a clear cause but one that was imposed on their offspring by government diktat.
Baron-Cohen, meanwhile, received a lot of flak for this theory but, as he puts it, just because it is controversial doesn’t mean it should not be investigated.
Either way, some people seem to be terribly protective of their ailments, over which they believe they have a sort of droit de seigneur. Research of which, in their ignorance, they disapprove is seen as part of some plot to do them down and consequently underplay their suffering, and they decide its proponents must be vilified.