XMRV – Michael Hanlon’s Blog | Daily Mail Online | 18 September 2012

Posting this does not mean that the ME Association agrees with any of this. It is simply an indication of what visitors to the Daily Mail website were able to read yesterday.

From Daily Mail Online, 18 September 2012 (Michael Hanlon's blog).

ME IS PROBABLY A MENTAL ILLNESS AFTER ALL – BUT THAT DOES NOT MEAN THAT IT IS NOT REAL

Tin hats on. A story about myalgic encephalomyelitis has emerged and, save animal experimentation, I cannot think of another area of science of medicine that arouses such passion. Indeed ‘passion’ may not be the word – ‘hysteria’ may be a better term.

Myalgic encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS) or, pejoratively (and quite unfairly) as Yuppie Flu, is a debilitating condition that causes extreme tiredness, chronic flu-like symptoms, pain and depression, mostly in youngish people aged 20-40. ME is real, it is a dreadful thing and affects maybe one in 200 people in Britain. Sufferers feel terrible, usually cannot work and it strikes out of the blue. People have been bedridden and in a few cases died. No one really understands what ME is but what we do seem to have shown is that whatever the cause, it is not a virus.

You’d think this was a fairly uncontroversial thing to say, but sadly not. Doctors who have stated that ME is not caused by a virus but may instead be a psychiatric condition have been compared to Nazi war criminals, bombarded with offensive and obscene emails, and have had to install panic buttons in their homes and program their phones to put the police on speed-dial. This kind of nonsense is set for a reprise with the publication this week of confirmation that there appears to be no link between ME and the rare HIV-like mouse viruses XMRV or pMLV.

Three years ago a study was published, in ‘Science’, suggesting that there WAS a virus link, but many scientists viewed the study with some scepticism. One of the scientists who had his doubts, Charles Shepherd, was the subject of vicious and concerted Internet abuse by those who insist ME is not a disease of the mind but an infection. This is bitterly ironic as Dr Shepherd has been vocal in his support for the view that ME may not be a purely psychiatric condition.

Then, last March, The Lancet published a study showing that a series of therapies, including exercise and cognitive behavioural therapy could be highly effective against ME – suggesting of course that this was primarily a mental problem not a physical disease. The doctor who performed the study, Simon Wessely, a professor of psychiatry at King’s College in London, was subjected to a hate campaign few scientist who do not perform vivisection on apes have ever had to endure. One of his tormentors compared him to the Nazi death camp doctor Mengele, hugely upsetting as Professor Wessely’s grandparents were killed in Auschwitz.

Quoted in the British Medical Journal last year, in an excellent piece on the ME hysteria written by Nigel Hawkes, Professor Wessely pointed out the sheer unpleasantness of these attacks. “These people are sulphurous, vicious; horrible … this was a particularly nasty example, because my grandparents may actually have been murdered by Mengele”.

The new study, published in the journal of the American Society for Microbiology, shows that the XMRV/pMLV hypothesis is almost certainly not correct. The original positive finding was probably the result of contamination. Now scientists are looking at psychological, genetic or autoimmune mechanisms to explain the disease.

So what on earth is going on? Why do people throw death threats around and compare humane doctors to death-camp psychopaths for daring to suggest that a disease has one cause not another? What does it matter whether ME is caused by a virus, a faulty gene, a psychiatric issue or an errant immune system? Maybe it will turn out to be a combination of two or more of the above. We do not know. Surely, one would think, the point is to find out and to find a way of curing it.

The problem seems to be the labelling of ME as a ‘psychiatric’ condition. To some people this means that it is not a ‘real’ illness, but rather something ‘just in the mind’. But this ignores that fact that psychiatric illnesses are as real as influenza and cancer and the ‘mind’ is an organ just like the liver or lungs. There is still plenty of stigma and nonsense attached to mental illness of course but the days when sufferers were despised as possessed by the devil and shunned by all are long behind us.

So what explains the virulence of the attacks? In the BMJ piece, Dr Shepherd surmised that many of the persistent campaigners do not have ME at all. They could be fringe obsessives, with ‘personality problems … they are damaged and disturbed, with an obsession about psychiatry’.

Something about this disease seems to cause a suspension of reason. It may of course be the case that a phobia of psychiatry emerges as part of the illness itself. That said, the ME sufferers I have met have never seemed particularly bothered one way of the other what is causing their condition; they just want to get better.

It is all very odd. The trial reported in the Lancet suggesting that exercise and CBT were effective was subject to a vigorous campaign, and one doctor (not an ME sufferer) wrote a 442-page rebuttal to the Lancet, which was full of accusations of bias. When this was given to the Medical Research Council for a response, another flood of accusations followed. There was a campaign to prevent NICE, the medical-value-for-money watchdog, not to approve ‘psychiatric’ treatments such as CBT. There was even a petition sent to Downing Street. This does not happen in other areas of medicine. Only the anti-vaccine campaigns provide some sort of parallel and even these did not involve the sort of vitriol and personal threats associated with the ME controversy.

What is the role of the ME Association, the patients’ campaign and support group? Dr Shepherd, the victim, remember of attacks after he voiced scepticism of the viral link, is medical adviser and trustee of the MEA. Despite this the Association was involved in the campaign to discredit the psychiatric approaches to treatment.

There is a deep mystery here and one is forced to suspect that there is more to all this than meets the eye. It may be the case that the ‘ME terrorists’, by which I mean those anonymous people who have issued death threats and suchlike, not those who have made a reasoned and intellectually respectable case for the virus hypothesis, amount to no more than a handful of very disturbed people who may not have anything to do with ME at all.

What is mysterious is the fact that although a belief that this disease is psychiatric in origin may be debateable and even controversial, it seems to arouse the same sort of passions that accompany vivisection, a far more (on the face of it) emotive subject. Perhaps now the final nail in the coffin of the virus theory appears to have been driven home, we will find out once and for all the true story behind the ME fanatics.