Cochrane Review: 'Exercise therapy for chronic fatigue syndrome' 2017, Larun et al. - Recent developments, 2018-19

Trish

Trish

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This thread aims to draw together all our discussions on the Cochrane Review:
Exercise Therapy for Chronic Fatigue Syndrome, Version published: 25 April 2017 by Larun et al.

Threads in date order from oldest to newest:

David Tuller: Trial By Error: The Cochrane Controversy

Cochrane ME/CFS GET review temporarily withdrawn

David Tuller: Trial By Error: Cochrane Withdraws Flawed Exercise Review

David Tuller: Trial by Error. A statement in Support of Cochrane

Cochrane backtracking

Caroline Struthers' letter to Cochrane Governing Board

30th Nov: Cochrane 'have not approved publication of the [Larun] re‐submission' - but old version not withdrawn either.

Trial By Error: Some Good News on Cochrane, David Tuller

Trial By Error: Cochrane Update, and Caroline Struthers’ Latest Letter

David Tuller: Trial By Error: Cochrane's Report on Courtney's Complaint

Also this thread about the Vink reanalysis.
Graded exercise therapy for ME/CFS is not effective and unsafe. Re-analysis of a Cochrane review (2018) Health Psychology / Vink

(There are also separate threads on two other Conchrane reviews for CFS - one on CBT, and one that was cancelled analysing individual patient data for exercise therapies. These are not included in the above list).

It is suggested that any new developments on this particular Cochrane review be posted on this thread to keep the discussion in one place and make it easier to follow.
 
The latest amendment:

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub7/full

17 June 2019

Amended

Addition of new published note 'Cochrane’s Editor in Chief has received the revised version of the review from the author team with changes made in response to the complaint by Robert Courtney. The process has taken longer than hoped; the amended review is being finalised and it will be published during the next 2 months.'
 
Trish said:
The latest amendment:

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub7/full

17 June 2019

Amended

Addition of new published note 'Cochrane’s Editor in Chief has received the revised version of the review from the author team with changes made in response to the complaint by Robert Courtney. The process has taken longer than hoped; the amended review is being finalised and it will be published during the next 2 months.'
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That amendment doesn't suggest they are bothering with any rigorous review process. I find it hard to see how we can have confidence in anything produced by the current authors since they have shown their lack of understanding of good methodology and the issues with many trials.

It also continues to suggest that Cochrane has weak editorial control which caused the problem in the first place.
 
Sadly I suspect you are right. If they were going to respond appropriately to all the valid criticisms, they would either withdraw the review, or change the conclusions to say there is no reliable evidence that GET is an effective treatment for CFS. They could have done that in an hour or two, not dragged their feet for months.
 
Sadly, it looks like we are heavily affected by an issue that is so much bigger than just ME/CFS.

Cochrane acknowledging that non-blinded studies that rely entirely on subjective outcome measures are problematic would have disastrous consequences for their entire brand. Since they would have to accept the fact that many of their reviews are entirely useless, which doesn't exactly play well with their reputation of being the gold-standard of medicine.
 
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strategist said:
They could save face by moving ME/CFS into some other category where the scientific standards are higher. So the elephant in the room doesn't have to be acknowledged.
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We were explicitly told that this would happen about a year ago. Clearly it is not going to happen. This looks like a very transparent retrograde step. When the revision appears we will have to address the situation again.

One slightly positive aspect of this is that the more I see of shenanigans the more I will be in. a position to say to the NICE committee that the whole thing is a shambles. And moreover, that there is clearly a problem with peer review and involvement of people with conflicts of interest.
 
Jonathan Edwards said:
We were explicitly told that this would happen about a year ago. Clearly it is not going to happen. This looks like a very transparent retrograde step. When the revision appears we will have to address the situation again.
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How do you think should this be addressed? Can we make an infographic that explains how lack of blinding leads to nonsensical conclusions? We can show results from that one asthma study and the open label Rituximab study. What the Cochrane review does (as far as I remember) is that it treats these studies as reliable, concludes the treatment works and then just has a small disclaimer like paragraph somewhere that says maybe they are actually unreliable. The conclusion of the review should be we have no idea if they really work.
 
I expected nothing and I'm still disappointed. Disappointed at the reckless indifference to the human lives they are hurting. Disappointed that medicine can be so massively incompetent and cruel even in the face of overwhelming evidence. Disappointed at the sheer inhumanity of the process, one that so casually chucks millions of desperately ill down a cliff, not even looking back.

There will be many lawsuits over this. Cochrane will not survive it. It may be years, but this will ruin it whole.
 
strategist said:
How do you think should this be addressed? Can we make an infographic that explains how lack of blinding leads to nonsensical conclusions? We can show results from that one asthma study and the open label Rituximab study. What the Cochrane review does (as far as I remember) is that it treats these studies as reliable, concludes the treatment works and then just has a small disclaimer like paragraph somewhere that says maybe they are actually unreliable. The conclusion of the review should be we have no idea if they really work.
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This isn't about evidence. It's politics. Too much has been invested in the psychosocial model. Over the years there have been thousands of consistent complaints, forcing its promoters to reaffirm constantly that they stand behind it, based on gut feeling and spurious logic and despite all evidence that it is clearly harmful and wholly misguided. They were asked again and again "are you sure?" and yes, they are sure that they want to keep pulling the metaphorical trigger.

Those responsible are choosing to save face and putting their career above withdrawing clearly harmful medical advice. They are willfully sacrificing lives by the millions in order to avoid the consequences of having done so deliberately in the first place, through well-documented and cogent evidence that their advice is based on fiction and fraud.

The only thing we can do is making it clear to them that this is what they are doing. They know, of course, but this is the only way to have them face consequences in the future, to put them on record so that when people ask "how did people not know?", there will be decades and hundreds of thousands of legitimate complaints over this, all dismissed with prejudice and with casual indifference to the outcome. And this here will be one more, again pleading for sanity in the face of bullying and wanton cruelty.

It has to be clear. Cochrane: you are hurting people. There is the overwhelming evidence for it. You know it. We all know it. You merely choose to dismiss it and cherry-pick an alternative fiction, will be judged by it and you will be ruined by your own hand.
 
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This from Wiki is of concern, and could account for quite a lot:


Wikipedia[edit]
Wikipedia and Cochrane collaborate to increase the incorporation of Cochrane research into Wikipedia articles and provide Wikipedia editors with resources for interpreting medical data.[40] Cochrane and John Wiley and Sons, publisher of Cochrane reviews, make one hundred free Cochrane accounts available to Wikipedia medical editors—the financial value of which has been estimated by Cochrane at between thirty thousand and eighty thousand dollars per annum—and pay a nominal stipend and travel expenses to support a Wikipedian in Residence at Cochrane.[41]
 
strategist said:
Cochrane cares about their image and brand. Showing how biased, incompetent and anti-patient welfare the reviewers and management is will hurt their image and brand.
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I am not so sure. I have a nasty feeling that what matters for brand image these days is showing you can bullshit your way out of any situation where you appear to be dead in the water. We are seeing it all the time in general politics. It seems now to be taking over medical politics. What people now look for in a brand is 'buyability' - evidence that for a reasonable price you can get the answer you want.
 
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