Cochrane Exercise Review Withdrawn - Individual Patient Data

It looks to me like this has actually happened- not sure if I can quite believe it.

Link:
https://www.cochranelibrary.com/con...1858.CD011040.pub2&type=cdsr&contentLanguage=

 

Can’t get the link to work here, but does via twitter, where I woke to the news.

https://twitter.com/user/status/1071294217031315456

 

Working link is https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD011040.pub2/full

 

I am now a bit confused. The tweet seems to refer to the individual patient data review, which was never published.

And the quote from Andy seems confirm that this is the IPD review. This is not the review that was going to be withdrawn.

 

I've lost track of all the ins and outs of this particular saga but this only seems to apply to "Exercise therapy for chronic fatigue syndrome (individual patient data)", while "Exercise therapy for chronic fatigue syndrome" still seems to stand (https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub7/full)

 

Yes - confusing: have edited the thread title to make clear it relates to individual patient data.

 

Good but insufficient. The main review needs to be withdrawn without any further delay.

 

Could someone explain how the individual patient data review is different from the more generalized one?

Just a stab in the dark: is this about patient A, then B, then C etc., rather than larger groups?

I've heard about this review, but don't know what it's about, except GET for ME.

Thanks in advance for the explanation!

 

The idea is that if you go back to individual patient raw data for the studies that are included in a meta-analysis you can in theory make a more rigorous analysis by ensuring that you compare like with like rather than just working with the published findings.

The problem with the way this was done was that in exchange for obtaining the data the relevant study authors were offered authorship of the meta-analysis, which makes a mockery of independent reviewing.

These individual patient data are of course the data that the PACE authors have refused to make available to anyone else other than Cochrane workers who offered them co-authorship. So we have the very worst scenario of gerrymandering of interpretation.

In practice the review says nothing very different from the one already published in 2017.

 

Wait, what?

Why would anyone at Cochrane ever agree to this?

 

A couple of queries

Is this the proposed study whose reviewers savaged it and was likely never to be published?

Is this a means of not providing data that can be analysed by others ?

 

Yes to the first question.
Probably no to the second. There was no intention to publish the raw data as such, just to make use of it in analysis.

 

The Cochrane Exercise Review that the authors recently resubmitted, with the resubmission being rejected is still online, see https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub7/full?highlightAbstract=withdrawn|cfs|exercise|exercis

However interestingly the word 'withdrawn' is now in its web address. Though a casual reader would still not notice that there are any acknowledged problems with the status of this article.

Since the updates on the 30th of November Mark Vink has added a comment (see https://www.cochranelibrary.com/cds....pub7/detailed-comment/en?messageId=160462657 ) that links to his excellent reanalysis of the issue of harm resulting from GET (see
https://journals.sagepub.com/doi/full/10.1177/2055102918805187 ), dated the 2nd of December, and Cochrane's Managing Edition of their Common Mental Disorders Review Group has added the following reply:

This still leaves unanswered the question why, given it is now acknowledged there are problems with the current published version, that it remains online with the information that it requires a complete rewrite hidden in replies to comments or in a Note at the bottom of the Information page?

[edited to correct typos, also to be fair to Cochrane that they are considering how to update this review is also under 'What's new' further up the main page for the review than my post suggested, though I would argue still easily missed by a casual reader.]

 

yes

 

So @Peter Trewhitt we are not fully out of the woods yet? Any idea when this might be finally sorted and the resubmission removed altogether. That's our ultimate goal, is that correct?

 

After the little boy pointed out that the emperor was naked, everyone was suddenly able to admit this fact. Hopefully something similar has happened at Cochrane.

 

I agree it certainly seems profoundly unsatisfactory that Cochrane have acknowledged there are significant issues with this review such that a complete rewrite is necessary, but leave it still online in a format such that the casual reader can easily access the full article without being aware that there is any question mark over its current status.

As Cochrane are taking ongoing action on this and on whether it is appropriate for ME/CFS to remain within the Common Mental Disorders Review Group (with a promised decision on this by the end of this year) the question now is which would be more productive: just waiting till Cochrane's internal discussions have run their course or trying to put pressure on them to take it off line now? Does anyone one with more experience have a clear feeling about this?

It is a major achievement to have got this far and it may be that further patient activism at present is unnecessary, that Larun and her colleagues' failure to answer criticisms adequately and their resorting to the usual BPS tactic of attack by leaking information to the Reuter's journalist with 'those horrid antiScience patients are bullying us' narrative hopefully doing as much as we could to alert Cochrane to the irrational biases of the advocates of this approach.

So I feel it is important we are seen to be the rational ones. Would a letter (or letters) to Cochrane commending their action so far and asking when they plan to remove the current version of the Exercise Review from their site, given the acknowledged problems with it be productive or not?

Also there is the issue that the CBT Review (see https://www.cochranelibrary.com/cds...027.pub2/full?highlightAbstract=withdrawn|cfs ) remains unquestioned, however would it be better to wait till we know which Review Group is that be responsible for hosting ME/CFS, given it could be a non psychiatric/psychological team might be more willing to address the problems in the experimental design?