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Scientists trade insults over ME (JHP special issue)

Old Bones

Senior Member
Messages
808
The news coverage is starting! Here, an article just released on "The Times" website:

https://www.thetimes.co.uk/edition/...-myalgic-encephalomyelitis-me-study-slk0cv5lj

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”.

The title basically is the story -- not many facts, but rather, a bunch of name-calling and controversial quotes.
 
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deleder2k

Senior Member
Messages
1,129
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”.
 
Messages
3,263
I have to say that again, Coyne's disinhibited behaviour has worked against us here. It has given the SMC something to work with, and something that overshadows the actual validity of the arguments.

I do not think David Marks covered himself in glory either. He should have said something much more statesmanlike, about how UK psychology/psychiatry is a tightly woven group, and many feel that disagreeing with one's colleagues is dishonourable, etc. etc. Often its more about factions than the truth.

Edit: on the other hand, shit sticks, and out of all these insults, what many people will remember is that it all had something to do with that particular trial.
 
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Kati

Patient in training
Messages
5,497
So no one blames 'the other side', Science Media Center and the psych lobby who have been in the wrong, and Davey-Smith who was supposed to be a principal investigator for MEGA?

No one taking into account that the British paper may already be skewed on one side because of SMC and BPS grooming?
 
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Messages
3,263
So no one blames 'the other side', Science Media Center and the psych lobby who have been in the wrong, and Davey-Smith who was supposed to be a primcipal investigator for MEGA?

No one taking into account that the British paper may already be skewed on one side because of SMC and BPS grooming?
I think that bit is obvious. I'm talking about how we might have played right into their hands.
 
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13,774
With a scandal like PACE, maybe we're only likely to get rather 'disinhibited' outsiders taking an interest?

People who carefully and cautiously assess whether it would be in their self-interest to get involved will often just stay away. We get people on our team when they respond with a 'this is fucking bullshit'.

I do wonder if Coyne still hasn't taken on board how much we've got stacked against us, and how little room for error we have. Being right often isn't enough. As patients we get reminded of that on a pretty regular basis.

I think that it would have been better if Marks and Coyne had been more restrained, but it's unlikely the Times was ever going to write up the methodological problems with PACE, and maybe there's something to the 'shit sticks' argument. Having stuff like this coming from academics is certainly much better than having patients portrayed as the insulting radicals.

I don't know what the best tactic in a situation like this is. It's a weird situation! I think it's best for patients to be cautious in the claims that they make, but maybe it's different for those able to speak with some authority?
 

deleder2k

Senior Member
Messages
1,129
I don't know how the medical establishment that doesn't know about ME perceives this.

This has been going on for years and years. Millions are suffering. We need a major disruptive force. Perhaps this is whats needed to get attention. I don't know, but I know that sometimes you have to do something out of the ordinary. Something that will make fuss.

I don't want to compare the case of ME to HIV in the 1980's, but lets just remember that to get people to understand the gravity of the situation people needed to do something else than write in the newspapers and to write letters to politicians. Sometimes you need to change the narrative. Make noise. Get attention. A story like this could become the #1 story in a split-second. It is possible.

I haven't read everything that Coyne has written though...
 
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13,774
On re-reading the article, I think it's pretty good for us overall. I'd have loved a detailed take-down of the PACE trial's flaws, and some of it is annoying, but it's still drawing attention to the academic scandal. That's a good thing, right? It makes it sound a bit exciting, and the sort of thing others may want to look into? If we get more independent people looking at this, that's to our advatage as the truth is on our side.
 

JamBob

Senior Member
Messages
191
I think it's quite a good article in some ways. The first sentences will make the biggest impression and they are very negative towards PACE.

What I'd really love to know is who provided the story to the Times and how they themselves framed the story. If it was Ed Sykes or Sir Wes then it looks like the Times didn't just print whatever they said uncritically.

There's another "editorial" part by Tom Whipple and Oliver Moody which is more on the fence but I can only grab a part of it....

"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.


............"


https://www.thetimes.co.uk/article/a-battle-of-prescriptions-99p8sdxs3
 
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TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
Behind the story

August 1 2017, 12:01am, The Times

A battle of prescriptions

Oliver Moody, Tom Whipple

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 will not be the last word on the subject.

In the original article it's good to see that even the Times isn't letting the psychosocial brigade have it all their own way, portraying it as six of one and half a dozen of the other is a significant move in the right direction, although nowhere near far enough of course. When I read the headline I did wonder who had been doing the insulting on our behalf, and of course it would be that liability Coyne. We have now been promoted from "borderline sociopaths" to "Professor Coyne and his allies".

Anyway, Coyne has got his wish of getting "all this backchannel bullshit into the open", and allowed the Times to portray the JHP's special edition as part of a childish academic spat. On the other hand "disgusting old fart neoliberal hypocrite" is a wonderfully attention-grabbing piece of publicity that will appeal to the British public, and if it's true that there's no such thing as bad publicity then his petulant rantings may have inadvertently done us a favour after all - we were never going to get higher level coverage from the Times anyway, what with their place on the board of the SMC and the lazy, spineless journalism we've had from them in the past.

Can't help noticing that 3 JHP board members stropping off in a huff is a newsworthy "mass resignation" whilst the fate of 250,000 UK citizens suffering from ME for decades seems totally unworthy of serious investigation.