Cochrane Review: 'Exercise therapy for chronic fatigue syndrome', Larun et al. - New version October 2019 and new date December 2024

Trish said:
I wonder whether all this relatively new stuff that restricts how reviews can be withdrawn was done specifically to scupper withdrawal of the Larun review
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I wonder that too, the timing seems to fit. But I did also wonder if I was being too self-centred, if it wasn't all about us. Maybe Cochrane has a portfolio of festering stuff-ups, not just the ME/CFS one? And, Cochrane have always been about the reviewers, or at least the favoured reviewers. They seem to go to great lengths to protect their reputations and wellbeing - it's not like an independent journal publishing situation. Often reviewers are employees, some are Cochrane office-holders, many are Cochrane friends.

It certainly would be interesting to know.
 
I'm writing an update about Cochrane and just noticed this statement from Feb 2020, when Hilda's appointment was announced:

“In October 2019, Cochrane announced its commitment to a full update [of] the Cochrane Review Exercise therapy for chronic fatigue syndrome. The statement noted plans for: ‘a comprehensive review of the protocol, which will be developed in consultation with an independent advisory group that we intend to convene. This group will involve partners from patient-advocacy groups from different parts of the world who will help us to embed a patient-focused, contemporary perspective on the review question, methods and findings.’”

In other words, Cochrane made clear its commitment to a full update in more than one statement. To now refer to this as a "pilot" effort is a really disgusting effort to gaslight. Nothing in any of the documentation indicates this was a pilot program. What was being "piloted," if anything, was the structure set up to conduct the update. Cochrane suggested they wanted to use this approach for other reviews. But the update itself was NOT a pilot effort.
 
dave30th said:
https://virology.ws/2024/12/23/tria...telling-me-cfs-patients-to-go-f-k-themselves/
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“The Editorial note has been agreed to inform readers that Cochrane is ceasing the production of a full update of this Cochrane review. A pilot project for engaging interest holders in the development of this Cochrane review was initiated on 2 October 2019 (see Editorial Note below) and has now been disbanded. Cochrane maintains its decision to publish this Cochrane review in 2019.”

So it actually takes them days to agree an editorial note - I can only assume whatever their excuse for the required and agreed to editorial note (relating to safety and misinterpretation of conclusions) that was written by the IAG for them to agree... how many months ago, a year? is a massive LIE then
 
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dave30th said:
https://virology.ws/2024/12/23/tria...telling-me-cfs-patients-to-go-f-k-themselves/
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Having recently also read the following thread: Declaration of Helsinki embraces health equity, 2024, Nature Medicine editorial | Science for ME

and then the following quote in the article about the 2019 'update' that they have now decided to pull

“In October 2019, Cochrane announced its commitment to a full update [of] the Cochrane Review Exercise therapy for chronic fatigue syndrome. The statement noted plans for: ‘a comprehensive review of the protocol, which will be developed in consultation with an independent advisory group that we intend to convene. This group will involve partners from patient-advocacy groups from different parts of the world who will help us to embed a patient-focused, contemporary perspective on the review question, methods and findings.’”
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Yet failed for what 2yrs? to even send them the protocol, having been sent it by the reviewers and just sat on it.

Well it seems the most incredibly strange response to the significant update to the Delcaration of Helsinki now requiring proper patient engagement to unpick any of their proper patient engagement that they have currently ?
 
I've replaced that version with this one, with an update/correction:

https://virology.ws/2024/12/23/tria...telling-me-cfs-patients-to-go-f-k-themselves/

It was pointed out to me that the engagement part really was a pilot project, and they called it that. So I've corrected that. However, as I point out in this revise, Cochrane I think really chose to conflate the engagement pilot process with the review itself, in essence implying that the update itself was just a pilot project. So their behavior is still vile.
 
With the new 2024 version of the exercise review does it create a distance from the editorial note attached to the 2019 edition that, albeit weakly, points out some of the flaws in this review:
In the last nine months, this Cochrane Review has been modified by the review’s authors and evaluated by independent peer reviewers and editors. It now places more emphasis on the limited applicability of the evidence to definitions of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) used in the included studies, the long-term effects of exercise on symptoms of fatigue, and acknowledges the limitations of the evidence about harms that may occur.

Cochrane’s Editor-in-Chief, Dr Karla Soares-Weiser, commented on the publication of the review, “Cochrane recognizes the importance of providing the best available evidence on interventions for ME/CFS to enable patients and clinicians across the world to make well-informed decisions about treatment. This amended review is still based on a research question and a set of methods from 2002, and reflects evidence from studies that applied definitions of ME/CFS from the 1990s. Having heard different views expressed about the evidence base for this condition, we acknowledge that the publication of this amended review will not resolve all the ongoing questions about this globally important health topic.
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Although the web address of this 2019 editorial note is show in the first page, you have to cut and paste to get to it and it is not obvious to the casual reader that it is still relevant to this 2014 version.
 
dave30th said:
I've replaced that version with this one, with an update/correction:

https://virology.ws/2024/12/23/tria...telling-me-cfs-patients-to-go-f-k-themselves/

It was pointed out to me that the engagement part really was a pilot project, and they called it that. So I've corrected that. However, as I point out in this revise, Cochrane I think really chose to conflate the engagement pilot process with the review itself, in essence implying that the update itself was just a pilot project. So their behavior is still vile.
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But what is the pilot project? Cochrane has been boasting of engaging with consumers for years, so it's not that, and they basically didn't do anything here.

Not that I expect them to bother making sense, they clearly don't have to even pretend.
 
I think the pilot was supposed to be the particular way of doing patient engagement with an IAG advising the review writing group, and some public consultation on the protocol. Most of it never happened, and we only find out now that Cochrane editors sat on the draft protocol for nearly 2 years, with the IAG never even seeing it, let alone advising ot being able to run a public consultation.
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I’ve been thinking about Cochrane’s motivations in cancelling the update.

Of course in a way it doesn’t matter. This is S4ME, and our focus is on science, not institutional politics. But in this case politics has successfully obstructed science, so we need to understand how that happened.

Some have suggested that Cochrane axed the update because it would have exposed methodological flaws that affect most of Cochrane’s reviews of pschobehavioural interventions.

I wonder though if that is giving Cochrane too much credit.

I doubt they got that far in their analysis. And if they did, they would also have realised that - just like NICE - they could junk PACE for using Oxford criteria without needing to get into the issues with subjective measures for unblinded interventions.

It seems to me that this was about this review specifically.

I suspect Cochrane leadership were persuaded that to redo Larun would destroy their credibility by giving in to a vested interest, i.e. patients. Since Cohrane’s business is appearing to be immune to vested interests, that argument must have persuaded leadership that blocking this review was an existential issue worth almost any amount of pushback.

This was a neat rhetorical trick in which the true vested interest (BPS advocates) were able to paint themselves as neutral proponents of EBM, while the patients (who as Jo Edwards points out have a strong interest in treatment efficacy) were successfully painted as biased.

This pseudoargument could have ensured no one senior in Cochrane considered the merits of the patients’ critique in detail.

I also wonder if one of the purposes of White et al’s Anomalies paper was to achieve exactly this result. They were not able to get NICE to back down, but they were able to set up a bogus narrative that “NICE was nobbled” to discourage Cochrane and others from listening to patients’ arguments.

Once again those with interventions to peddle have successfully persuaded large parts of the medical research community that we are toxic and can’t be engaged with. Previously we were portrayed as violent and unstable. Now the argument is that we are too involved in the science and therefore are a vested interest who need to be kept at arm’s length lest our views contaminate treatment evaluation.
 
The odd thing with that argument is that they have already dealt with a complaint, presumably from BPS people back in 2021 (edit: or maybe 2022/3). One of the updates described a laborious process involving multiple Cochrane committees taking a year to consider a complaint that asked for the process to develop the new review to be halted and the 2019 review to stay in place on grounds, I think, of unbalance and too much influence being given to patients. That was rejected, with the decision to add a doctor who treats ME/CFS to the
IAG for 'balance'. Hilda asked for nominations of such a doctor by the end of January 2024, but we heard no more about it.

I think they have realised they have set up such an unwieldy process involving so many stages and groups, that it was never going to work in a cost or time effective way, possibly deliberately building in so many stages of reviewing the draft protocol that they would always be able to find excuses not to complete the process. I think the fact that after 2 years the IAG never even saw the protocol they were set up 4 years ago to advise on shows just how ridiculous the whole set up was.

The stumbling block to progress with the new review must lie within the senior editorial team, doubtless influenced by senior Cochrane people like Garner and Glasziou.

Paul Glasziou is of particular concern, I suspect, because he was an advisor to the Larun review, and is also editor of the Australian GP's guidance on exercise for ME/CFS which recommends GET using only the PACE GET manual and Cochrane as references. Australia is currently developing its new national ME/CFS guideline. There may be a connection with this Cochrane decision.

It is all wrong. So very wrong.
 
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