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Cochrane Exercise Review Withdrawn - Individual Patient Data

Discussion in 'General ME/CFS News' started by RuthT, Dec 8, 2018.

  1. RuthT

    RuthT Senior Member (Voting Rights)

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  2. RuthT

    RuthT Senior Member (Voting Rights)

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

     
  3. Andy

    Andy Committee Member & Outreach

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

     
  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    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 This is not the review that was going to be withdrawn.
     
  5. Andy

    Andy Committee Member & Outreach

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  6. RuthT

    RuthT Senior Member (Voting Rights)

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

    strategist Senior Member (Voting Rights)

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 The main review needs to be withdrawn without any further delay.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

    DokaGirl Senior Member (Voting Rights)

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    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!
     
  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    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.
     
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  10. Philipp

    Philipp Senior Member (Voting Rights)

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    Wait, what?

    Why would anyone at Cochrane ever agree to this?
     
  11. Trish

    Trish Moderator Staff Member

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    As far as I can see the only thing that ever got published from this was the protocol for doing the review. So it seems the paper itself has been withdrawn without ever being published and now the protocol is being withdrawn too, making it clear the paper will never be published.
    I must say I was shocked that the list of authors included the PACE and FINE trial investigators. I agree that is ludicrous.
     
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  12. Adrian

    Adrian Administrator

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    White also providing some funding for the development of the protocol.

    I wonder if they have withdrawn the protocol and hence any review from being published? The protocol was basically flawed anyway.
     
  13. Amw66

    Amw66 Senior Member (Voting Rights)

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    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 ?
     
  14. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    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.
     
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  15. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    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.]
     
    Last edited: Dec 8, 2018
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  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    yes
     
  17. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    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?
     
    Last edited by a moderator: Dec 8, 2018
  18. strategist

    strategist Senior Member (Voting Rights)

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    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.
     
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  19. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    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?
     
  20. Trish

    Trish Moderator Staff Member

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    They now have Mark Vink's excellent paper pointing out in detail all the flaws and have said they will look at it. I guess we need to give them time to do that.
     
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