I totally agree. Loose canons should be allowed to roll off the ship into the deep blue yonder imo. We need a tight ship now.
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Scientists trade insults over ME (JHP special issue)
- Thread starter Old Bones
- Start date
I totally agree. Loose canons should be allowed to roll off the ship into the deep blue yonder imo. We need a tight ship now.
dangermouse
Senior Member
- Messages
- 430
Interesting developments.
Has anyone posted the entirety of the Whipple/ Moody article for those of us not signed up to The Times please?
WE'RE IN THE TIMES!!!
https://www.thetimes.co.uk/edition/...-myalgic-encephalomyelitis-me-study-slk0cv5lj
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 (pictured), 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”.
https://www.thetimes.co.uk/edition/...-myalgic-encephalomyelitis-me-study-slk0cv5lj
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 (pictured), 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”.
Snow Leopard
Hibernating
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- South Australia
Telling potential authors to fuck off is entirely reasonable?
I can cut angry patients some slack, but people like Coyne who are merely speaking on our behalf, not so much.
I don't think so. I think it's getting PACE the attention that it needs. And even in the comments you can see people who know nothing about PACE giggling with delight that the academics are rolling in the mud and pulling each others' hair over this. Perhaps it's more "Jerry Springer" than NPR or BBC, but people are taking notice - and in a forum where they're getting a decent look at both sides of the story.
No, simply using strong language is not abuse. It's insulting and it's disparaging, but no one is being abused by it. Verbal abuse can be a very serious problem, and it trivializes it to label Coyne's justified outrage as abuse.
Exactly. There's a nasty fight going on, but we're staying pretty clean. And we look far more credible when it's someone else doing our fighting for us. It shows that we're worth fighting for, even by someone with no personal connection to our disease.
They had plenty of opportunity (6+ years) to get involved earlier, and didn't. Either because they weren't interested or hadn't heard about it. And now they still have a chance to get involved, with a nice niche waiting for them as the voice of reason.
Better him going a bit over the top than us. And if a good "fuck off" was ever warranted, it's one aimed at the PACE fan club. Of course, it would be great if someone dug into the situation a bit deeper now - to see the real persecution that those researchers have directed toward anyone that challenges them. Not just rude and naughty words, but trying to get people fired, outing their medical conditions, and silencing their voices in journals and even blogs. There's a whole heap of ripe and stinky trash waiting to be uncovered, and it's only just under the surface so there isn't even much digging needed.
Stewart
Senior Member
- Messages
- 291
Telling a member of the editorial board of a journal who submitted an article for publication in that journal - then refused to abide by the journal's peer review processes - then resigned from the board accusing the journal of behaving in an 'unscientific' and 'not very balanced' fashion - to fuck off doesn't seem unreasonable to me.
JoanDublin
Senior Member
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- 369
- Location
- Dublin, Ireland
All I know is that it's been a while since I guffawed out loud and the comments by Coyne made me nearly choke! We have not gotten far by politely engaging with these liars and charlatans. So I, for one, am not a bit perturbed by Coynes use of words. It's definitely got everyone's attention. The Press like nothing more than a juicy mud slinging match. I'm pretty sure this crowd have never had anyone dissing them like this and it must be shocking to their establishment core. I'm sick of their lies and abuse and if Coyne is willing to take this one for the team, then so be it.
Never forget these bastions of respectable society are coining it in on the backs of people like my son and many many more very ill people. They are the ones who should be ashamed.
Never forget these bastions of respectable society are coining it in on the backs of people like my son and many many more very ill people. They are the ones who should be ashamed.
MEPatient345
Guest
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- 479
The big takeaway from this article is that one of the scientists on our side was emotional and massively unprofessional. It really detracts from their argument. I read it cringing entire time. How difficult is it to communicate like an adult? Coyne horrifies me. He comes across like someone just itching for attention and a fight -- any fight. It makes us all look bad by association and adds fuel to the "harassment" fire since that is out there and repeated in the press and no one will listen to the truth that it didn't happen.
Jonathan Edwards
"Gibberish"
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- 5,256
I think valentijn hits the nail on the head:
'if a good "fuck off" was ever warranted, it's one aimed at the PACE fan club.'
Considering the level of hypocrisy and self interest involved I think fuck off is absolutely appropriate. Davey Smith has made himself look small and grubby and not a suitable person to be on an editorial board. For reasons given in detail in Marks's editorial the issue was not unbalanced or biased. At least one pro-PACE offering was turned down but we had the chance to see that on a blog and it was about as bad as one could get.
I have seen the in crowd closing ranks all my life. They used to do it with a certain style - invisible and courteous. Of late people have come to think they can get away with it with hobnail boots on.
It stinks, so why not say so?
AndyPR
Senior Member
- Messages
- 2,516
Exactly this. For how long have we been trying to sensibly and reasonably point out all the flaws with PACE and the rest of the BPS religion? They won't get into a logical and reasoned argument about the science involved because they know they would lose, so we need someone to engage them in a different way, and that someone seems to be Coyne, and Marks to a lesser extent. And to labour the point that I made earlier, when it is done by a non-patient scientist then all the better.
Demepivo
Dolores Abernathy
- Messages
- 411
Like the Times article, life is messy.
The ME/CFS world is a bit like Game of Thrones but with uglier people.
Esther Crawley as Cersei Lannister?
The ME/CFS world is a bit like Game of Thrones but with uglier people.
Esther Crawley as Cersei Lannister?
A.B.
Senior Member
- Messages
- 3,780
I've been saying this for years: the PACE authors are not misguided fools, they know what they're doing and don't care how many patients are hurt through their actions.
White knew that physical function doesn't follow a normal distribution because before PACE he published a paper that examined this issue. Then came PACE where physical function similar to a patient with rheumatoid arthritis was declared to be normal based on calculations that assumed a normal distribution. White was the lead author. There is no excuse.
Then this whole issue of outcome switching, followed by attempts to present the new protocol as the original one while trying to keep data hidden. That's not the behaviour of misguided fools but that of callous fraudsters and serial liars.
Does anyone really think that in 25 years they haven't noticed the harm that patient surveys clearly show? They just don't care.
And yes all this matters because the strategy for dealing with misguided fools is different than the strategy for dealing with callous fraudsters and serial liars.
The ME/CFS community needs to finally acknowledge that we're being oppressed by powerful forces through a carefully constructed psychogenic narrative, not merely hurt by starry-eyed fools believing in mind-body magic.
White knew that physical function doesn't follow a normal distribution because before PACE he published a paper that examined this issue. Then came PACE where physical function similar to a patient with rheumatoid arthritis was declared to be normal based on calculations that assumed a normal distribution. White was the lead author. There is no excuse.
Then this whole issue of outcome switching, followed by attempts to present the new protocol as the original one while trying to keep data hidden. That's not the behaviour of misguided fools but that of callous fraudsters and serial liars.
Does anyone really think that in 25 years they haven't noticed the harm that patient surveys clearly show? They just don't care.
And yes all this matters because the strategy for dealing with misguided fools is different than the strategy for dealing with callous fraudsters and serial liars.
The ME/CFS community needs to finally acknowledge that we're being oppressed by powerful forces through a carefully constructed psychogenic narrative, not merely hurt by starry-eyed fools believing in mind-body magic.
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adreno
PR activist
- Messages
- 4,841
Wessely as Littlefinger?
Stewart
Senior Member
- Messages
- 291
I get the impression that the members of PACE Club ("The first rule of PACE club is... if someone questions PACE, shout "They're harrassing me! They're harrassing me!") don't have a clue how to deal with Coyne. They've tried quietly schmoozing him, and he's thrown it back in their face. They've tried using indirect pressure to silence him, and he's vented on his blog instead. Their usual methods haven't worked, so now they've resorted to publicly flinging mud at him - and rather than defend himself he's taken the opportunity to throw it back at them, ensuring that criticisms of PACE reach the widest possible audience.
This can't be what they were hoping for. I don't think they'll try this tactic again in a hurry.
Mrs Sowester
Senior Member
- Messages
- 1,055
Coyne got the publicity we need and got all the relevant information into print in a massive national newspaper.
The Times were hardly going to print a story about a polite scientific spat were they?
We've crept along being meek and polite and progress has inched forward at a snail's pace. Coyne's intervention here has catapulted a small story into a larger, juicer one. The 'nothing to see here folks, move along' BPS tactic has been blown out of the water. This is a really good thing.
And to publicly link PACE's funding by the DWP with attempts to deny patients benefits is brilliant - it's a story that a newspaper can really get its teeth into.
Good job Coyne, righteous anger well directed!
The Times were hardly going to print a story about a polite scientific spat were they?
We've crept along being meek and polite and progress has inched forward at a snail's pace. Coyne's intervention here has catapulted a small story into a larger, juicer one. The 'nothing to see here folks, move along' BPS tactic has been blown out of the water. This is a really good thing.
And to publicly link PACE's funding by the DWP with attempts to deny patients benefits is brilliant - it's a story that a newspaper can really get its teeth into.
Good job Coyne, righteous anger well directed!
A.B.
Senior Member
- Messages
- 3,780
Yes a lot of the debate about PACE has focused on methodological problems. That's the kind of debate you do when you think the other side is just ignorant and needs to be educated.
Pointing out how this is pseudoscience used to oppress sick people is exactly what's needed.