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

yes, if anything thinks COPE has any teeth or would do anything.

 

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.

 

I am pretty sure it was. There seems little reason otherwise to make such an unreasonable rule.

 

Can someone point me to the link for Hllda's statement about the IAG objecting??

 

excellent, thanks!

 

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

 

Well said

 

“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

 

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

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:

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.

 

These weekly news summaries are so invaluable!

 

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.

 

Still no note on PubMed that I can see.

 

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.