Cochrane Exercise Review Withdrawn - Individual Patient Data

chrisb said:
That will be due to the Procrustean bed by which people are diagnosed, to declare them suitable for CBT/GET.
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For those, like me, who need a bit of explanation :)

Procrustean
/prə(ʊ)ˈkrʌstɪən/
adjective
adjective: Procrustean
  1. (especially of a framework or system) enforcing uniformity or conformity without regard to natural variation or individuality.
    "a fixed Procrustean rule"
In Greek mythology, Procrustes (Ancient Greek: Προκρούστης Prokroustes) or "the stretcher [who hammers out the metal]", also known as Prokoptas or Damastes (Δαμαστής, "subduer"), was a rogue smith and bandit from Attica who attacked people by stretching them or cutting off their legs, so as to force them to fit the size of an iron bed.

The word "Procrustean" is thus used to describe situations where different lengths or sizes or properties are fitted to an arbitrary standard.
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https://en.wikipedia.org/wiki/Procrustes
 
Jonathan Edwards said:
I guess that is possible. However, if another review is commissioned it would presumably replace the one now in place. The only problem with that is that it is doubtful that anyone will be motivated to do another review who is not biased towards making it sound positive.
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On the contrary, I think patients and academic supporters would be very motivated to making it accurate.
 
I approve enthusiastically of the proposal to place our own review of ME/CFS into the Cochrane library.

The current review of exercise therapy never mentions PEM and proposes that deconditioning is a useful model to understand ME/CFS, which is reduced to chronic fatigue that may be accompanied by other symptoms. In general it reads like something White et al would have written (within the constraints of Cochrane's rules).

So there is a lot of room for improvement. Getting the review of exercise therapy retracted while getting our own review of the management of ME/CFS into the Cochrane library would be fantastic. Management would include advice on recognizing and managing PEM, orthostatic intolerance, mobility aids, care for severely ill, sound and light intolerance, heart rate meter assisted pacing, and simple things like using a chair while showering and cooking.

This primer on diagnosing and treating pediatric ME/CFS is a good example to follow:
https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full
 
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Jonathan Edwards said:
Quite so but would they be motivated to go through the hoops of actually producing a review. Tearing hair out comes to mind.
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Producing any piece of research involves hair-tearing to an extent, and patient and their academic supporters have an excellent track-record of producing things so far. I think this is doable with the right team, which would ideally include healthies and academics based in universities.
 
Been seeing some confused posts on Facebook about what has and hasn't been withdrawn, so I've just posted this to, hopefully, help clarify things. If anybody sees an error in what I've put then do let me know though. :)
 
Andy said:
Been seeing some confused posts on Facebook about what has and hasn't been withdrawn, so I've just posted this to, hopefully, help clarify things. If anybody sees an error in what I've put then do let me know though. :)
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Thanks Andy.

These are minor points: I guess that you can't really withdraw an unpublished review, so it was just the protocol that was withdrawn, indicating that the planned review will now not be published. Also, the statement says that it was not the authors who withdrew it but: "The editorial group responsible for this previously published document have withdrawn it from publication."
 
Jonathan Edwards said:
I don't think this was David's intended meaning. I agree with David that it looks as if 'Cochrane', by which we actually mean the editor in chief David Tovey, is playing things by the book and methodically moving in a sensible direction. It may be unreasonable to expect him (as a person) to do more and this looks to me like a clever way to indicate that he understands what needs to be done.

I think maybe we should view Cochrane not so much as a group of people with a political agenda, although historically there was an element of that. but more as a public library with Tovey as the librarian.

The way a public library goes ultimately depends on the people using it. There is a building and a librarian who has certain rules to stick to but both the choice of books and the rules ultimately depend on what the users want. So in a sense the problem here with peer review has not been Cochrane itself but the community of people who use Cochrane - those who write and referee the reviews. Tovey can only try to apply rules consistently.

It looks as if there is a rule that says that once a review is accepted by peer review and published it can only be withdrawn by agreement. There is every reason to think there is not going to be an agreement. If librarians overrule rules they can easily be fired so Tovey does not necessarily have elbow room. If someone is allowed to take out six books instead of four they cannot then be fined for taking out too many books.

BUT, if, as has happened, Cochrane realised that peer review was not working well and decided to send out a review to a wider range of referees, and the standard peer review system yielded a resounding No Thanks, then Tovey cannot be criticised for withdrawing that review permanently. He is following the rules to the letter. Nobody can cry foul about patient activists or him being biased.

So I actually think this is a hugely positive step. It confirms that in good faith Cochrane changed their peer review policy, as we were told they had, and have now stuck to to the results. Thanks to Kate Kelland everyone who might be interested has been made aware that Cochrane would also prefer to withdraw the original review. That leaves that review with no credibility in the context of NICE or whatever.
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So by following the rules while being aware of the controversy Tovey has acted as well as we could hope by accepting the review of individual data but then giving it out to proper peer review instead of handing it to the author's mates to get an uncritical accolade.

Then he tried to get the author's of the published review to do a correction but they stuck to their guns so he would not accept it. Possibly he threatened to withdraw it without their permission and that is when they did their "Reuters" thing.

So instead he followed the rules again so they couldn't kick up about militant antiscience patients influencing things and causing more confusion and spreading bad feeling for us which he knew wasn't justified as well as damaging Cochrane's reputation. (The Guardian podcast shows how simple it would be to turn everyone against us).

Now the review is said to be "outdated" so it can be replaced by one which includes all the criticisms of the trials, or at least, gives a fair assessment of bias in them, and being done by reviewers outwith the mental health section but no one can object because all the proper rules have been followed.

This may actually be a better outcome than just withdrawing the review and leaving the BPSers to use their far reaching influence to imply they were right and the research was sound but only withdrawn by giving in to patients, not by a clear sighted look at the evidence.
 
dave30th said:
It could easily end up like PACE--not withdrawn but essentially discredited and hopefully not really citable any longer as "evidence" to support bad policies.
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UpToDate still cites PACE and Cochrane as "evidence" to recommend GET/CBT as beneficial for some patients in their Nov 2018 literature review. UpToDate now finally acknowledges there are serious PACE methodological issues, and also that GET can worsen PEM in some patients.

Anything to discredit Cochrane is welcome, but a complete retraction would be better.
 
I am hoping that the review will be "superseded" as out of date and one which acknowledges all the flaws with BPS research becoming the Cochrane gold standard. This will consign the rubbish to history but not let them blame us and keep pretending their conclusions were valid.
 
What is the current state of play over this so called withdrawn review that doesn't appear to be withdrawn.

Last we heard Cochrane were giving Larun yet another chance to rewrite the review or were they? No one really knows.

Almost two months later and we still have no progress. No statement from Cochrane no new review from Larun and yet no retraction.
 
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