ME. Myalgic Encephalomyelitis. Not the last (or the least) word…

Chronic fatigue in the third world is not associated with ME. Usually it is TB, and sometimes any other chronic disease, perhaps causing anaemia. There are psychological conditions in the third world, but few if any diagnoses of ME. Is this diagnosis something to do with the doctor-patient relationship? Could it be partly due to a collusion of anonymity and doctors passing the buck to another? Yes it is real. But research of dubious nature should not result in treatment recommendations, and the idea that cheaper non therapeutic treatments can be justified has no moral advantage over homeopathy – which would be a lot cheaper. In addition, was this research rejected by other journals? If so this needs to be made public, and the analysis as to why. And if the disease believers constantly change the rules of debate they can prevent anyone scientific and logical having the last word.

Image result for the last word cartoon

One lot of scientists is mocked as stooges of a free-market conspiracy to dismantle the welfare state. The other stands accused of marshalling a bloody-minded and ideologically driven “witch-hunt”.
How did an argument about a clinical trial become so personal? The first thing to understand is that chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a very real and traumatic illness affecting about a quarter of a million Britons.
Although the main symptom is fatigue, others include muscle pain and problems with sleep, memory and concentration.
For many years patient groups and sympathetic researchers had to fight the medical establishment for acknowledgement it is a real syndrome.
Now it has been officially recognised, the battle line is between those who think ME needs psychological interventions and those who believe it is mainly physical.

Six years ago, UK government-funded scientists published the results of the 641-patient Pace trial, which showed that ME could be treated with a combination of standard medical care, exercise and cognitive behavioural therapy.

Yet many patients resent the implication ME is somehow “in the mind”. The Pace trial’s academic critics also say they have found a large number of serious flaws.

The dispute touches on people’s political beliefs. Only one thing is sure: yesterday’s broadside by the Journal of Health Psychology (Chronic fatigue syndrome patients have no reason to accept the PACE trial results: Response to Keith J Petrie and John Weinman ) will not be the last word on the subject.

Scientists trade insults over myalgic encephalomyelitis (ME) study

An acrimonious scientific row has broken out after a £5 million publicly funded study investigating treatments for chronic fatigue syndrome was condemned as “deeply flawed” and a “textbook example of a poorly done trial”.

The dispute led to mass resignations and an exchange of insults so intense that in emails seen by The Times one scientist referred to another as a “disgusting old fart neoliberal hypocrite”.

An entire edition of a health journal was devoted yesterday to attacking a landmark study called the Pace trial, published in The Lancet in 2011. It claimed to show that people with chronic fatigue syndrome (CFS) could improve their condition with simple lifestyle changes.

This has formed the basis of treatment of the condition, also known as myalgic encephalomyelitis (ME), in Britain, but provoked a backlash among some sufferers who feared that it implied the illness had a psychological rather than physiological origin. Others said that exercise, far from helping, made them worse. Academics have criticised the trial too, particularly after a freedom of information request revealed all the patient data. Some have argued that it showed the statistical methods were flawed, and that the criteria for deeming the trial a success were changed midway through.

The editors of the Journal of Health Psychology said it was clear that “the results are, at best, unreliable, and at worst manipulated to produce a positive-looking outcome”. They did not justify the “extraordinary sum” charged to taxpayers.

The Times has learnt that this view was far from unanimous: three editors on the same journal left in protest before publication. On June 23 George Davey Smith, from the University of Bristol, wrote to the editorial board complaining of “unacceptable one- sidedness”, saying that the journal had accepted only submissions critical of the trial, except for one that was followed by a commissioned critique of it.

James Coyne, a co-editor on the journal and emeritus professor at the University of Pennsylvania, said he was glad to see Professor Davey Smith go, replying: “I have become sick and tired of you badgering me backchannel.” He added: “You had long been one of my intellectual heroes but in your attempt to bully me you moved from a Trotskyite in your younger days to a disgusting old fart neoliberal hypocrite.”

Referring to Jane Ogden from the University of Surrey, who also left, he said: “Along with Jane Ogden who became so threatening when I offered a critique of her paper with which her chosen Pace fan agreed, f*** off. Let’s get all this backchannel bullshit into the open, you ol’ sleazebag.”

Yesterday Professor Ogden said that she had become increasingly worried about the planned edition. The Pace trial has come in for patient criticism so sustained that its original researchers, one of whom she knew, complained of harassment. She felt that this edition was not the balanced investigation that she had hoped for. “I just thought it was looking like a one-sided and very biased witch-hunt so I resigned. I felt I was getting caught up in something that was not very balanced or scientific.”

Professor Coyne said that his relationship with Professor Ogden and Professor Davey Smith had broken down after he accused them of undisclosed conflicts of interest, a charge they deny.

The dispute has taken on a political dimension. Professor Coyne and his allies argue that the Pace trial’s central message, that the illness can be treated with exercise and behavioural therapy, is being used by right-wing governments to lever patients off disability benefits.

David Marks, editor of the Journal of Health Psychology, said the three former board members would not be missed, because “for every resignation there are five or ten meritorious replacements who will be less weighed down by baggage than those three carry”.

He said that the special issue showed that the Pace study had been fraught with errors, adding: “The many wrongs committed by psychiatry and medicine to the ME/CFS community can only be righted when the Pace trial is ultimately seen for what it is: a disgraceful confidence trick to reduce patient compensation payments and benefits.”

Malcolm Macleod, a neurologist at the University of Edinburgh who was not involved in the Pace trial, said that “while not perfect [it gives] far and away the best evidence for the effectiveness of any intervention for chronic fatigue”.

Carl Heneghan: The irrational rationing of healthcare

‘No reliable evidence’ that homeopathy is effective

High Court to decide on meaning of “exceptional”, and also whether trials of unproven treatments should be allowed in such cases..

Medical papers published or on-line should legally be obliged to reveal which journals refused publication..



This entry was posted in A Personal View, Commissioning, Stories in the Media on by .

About Roger Burns - retired GP

I am a retired GP and medical educator. I have supported patient participation throughout my career, and my practice, St Thomas; Surgery, has had a longstanding and active Patient Participation Group (PPG). I support the idea of Community Health Councils, although I feel they should be funded at arms length from government. I have taught GP trainees for 30 years, and been a Programme Director for GP training in Pembrokeshire 20 years. I served on the Pembrokeshire LHG and LHB for a total of 10 years. I completed an MBA in 1996, and I along with most others, never had an exit interview from any job in the NHS! I completed an MBA in 1996, and was a runner up for the Adam Smith prize for economy and efficiency in government in that year. This was owing to a suggestion (St Thomas' Mutual) that practices had incentives for saving by being allowed to buy rationed out services in the following year.

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