Cochrane ME/CFS GET review temporarily withdrawn

Discussion in 'Psychosomatic news - ME/CFS and Long Covid' started by Trish, Oct 17, 2018.

  1. Barry

    Barry Senior Member (Voting Rights)

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    Trouble is when I googled for the article, the one @Adrian found with the notice on does not turn up, not that I could find. Only the un-notified version. Thought I was pretty good at chasing things down but cannot find it with google.

    I will give their contact link a go. Many thanks. At least they will know people far and wide are taking an interest.
     
  2. NelliePledge

    NelliePledge Moderator Staff Member

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    Because the newer page is orphaned and won’t have received anything like the number of page views it wouldn’t surface very high on any google search rankings
     
  3. Wonko

    Wonko Senior Member (Voting Rights)

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    However, this is a problem that need not exist, if there was only one copy, if they had, I don't know, simply altered the review, rather than creating a new copy and adding the bit to the end of it.

    As in the event of there being the one, amended, copy, the original google search, would point to that.

    IMO it's deliberate, to 'hide' the amended version, as what they've done is actually more more work, more effort, and doesn't achieve the stated aim, to notify that the review, is under review.
     
  4. inox

    inox Senior Member (Voting Rights)

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    @Barry - I found it via the Cochrane site :) It seems like they have two versions, one beeing a sort of pfd-preview/pdf e-reader file and the other the main file. The updated version is in the section for version control. Seems like someone forgot/didn't know that putting up a new version in the history/version control section wouldn't update the other?


    with note - the link on the page history/what's new, in the table for version control:
    https://www.cochranelibrary.com/cds...D003200.pub7/media/CDSR/CD003200/CD003200.pdf

    without note - on the front page, seems to be an e-reader version of the pdf:
    https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub7/epdf/full
     
  5. NelliePledge

    NelliePledge Moderator Staff Member

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    Agreed but it just depends on their approach to updating pages. in some organisations with a publishing team they might create a fresh version that can be checked and approved for publication and if someone accidentally pushed that live rather than overwriting the existing page at the existing URL you have 2 live versions. I know this happens because I had occasional glitches at work it was a bureaucratic error in those cases

    ETA As the content team we were always trying to get information out in HTML web pages rather than PDFs. Technical experts seemed to like PDFs for some reason but as I remember PDFs weren’t very searchable just the title and there seemed to be more issues with multiple versions than with HTML pages because changes to the document were made outside the content management system and just uploaded. But my knowledge is now about 5 years out of date so may no longer be accurate.
     
    Last edited: Oct 28, 2018
  6. inox

    inox Senior Member (Voting Rights)

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    Last edited: Oct 28, 2018
  7. Barry

    Barry Senior Member (Voting Rights)

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    I've just sent this email to David Tovey ...
     
  8. Trish

    Trish Moderator Staff Member

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    This has probably been discussed before, but I notice that the one person who has been involved with the different versions of the Cochrane reviews of Exercise Therapy for CFS all the way through from the first version in 2001 is Jonathan Price, who works in the Department of Psychiatry at Oxford University, so he is a colleague of Michael Sharpe.

    I looked up Jonathan Price. He is listed as a clinical tutor in the Department of Psychiatry. He has published on various aspects of psychiatric treatment. This one is of interest:
    https://www.medicinejournal.co.uk/article/S1357-3039(16)30195-5/fulltext
    The note about him on that paper says:
    ''His interests include patient attitudes to treatment and cognitive behavioural treatments.''
    Edit to add:
    The paper I mention is:
    Functional disorders and ‘medically unexplained physical symptoms’ published in 2016.
    The abstract concludes:
    So he is biased from the start.
    This is a clear case demonstrating the importance of removing ME/CFS from the mental health section of Cochrane.
     
  9. NelliePledge

    NelliePledge Moderator Staff Member

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    Nice one @Barry i think it will be clear that actions are under the microscope
     
  10. Trish

    Trish Moderator Staff Member

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    Again, catching up, so apologies if this has already been discussed. I note on the history/information page:

    Surely if they looked at the long term follow up of PACE and the 12 month point of FINE which seems to be the longest term available, both of which showed NO between group differences, they must surely conclude that these were both null trials. As far as I know all the other studies included were much smaller and shorter term. On this basis alone, they should not be recommending exercise therapies for anyone with ME/CFS, or even for anyone with 6 months or more of unexplained fatigue.
     
  11. inox

    inox Senior Member (Voting Rights)

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    You know what Landmark and the norwegian bps-crowd's spin on that is...?

    Evidence that ME-patients needs continues treatment to keep up the good treatment effect..... :-/
     
  12. Lucibee

    Lucibee Senior Member (Voting Rights)

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    One of the problems they had was in the definitions of "follow-up" and the assumptions about therapy contamination. For example, in PACE, the 12-month time-point was the end of the study period, and not long-term follow-up (that was at 30 months), and participants weren't allowed to switch therapies within this time period. In others, 12 months was considered long-term follow-up, and there may well have been therapy contamination. This indicates that the studies included were highly heterogeneous, not only in the patient populations studied (cf PACE and FINE), treatments used (definition of "exercise"), but also in terms of the definitions of what constituted follow-up, treatment duration etc.

    Any form of quantitative review that includes such a diverse range of studies is going to be essentially meaningless, even if you can delve down and obtain specific data from the trials themselves. You might get them all to match on one thing, but they will then all fall apart on many others.
     
  13. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    Yes, and this was a quantitative review that includes a diverse range of studies which themselves produced uninterpretable results!

    I’ve just been re-reading Tom and Bob’s comments on the Cochrane review. Larun’s responses are so weak it is astonishing that the review has been able to stand for so long.

    There’s no point in repeating everything that is published but I was struck by Larun’s apparent belief that the Cochrane guidelines don’t need to be applied to her review, and that, for example, she can decide for herself what constitutes a high risk of bias. In response to Tom Kindlon she writes: “Overall, we don’t think that the issues you raise with regard to the risk of selective outcome bias are such as to suspect high risk of bias, but recognize that you may reach different conclusions than us.”

    And in response to Robert Courtney’s follow-up, where he explains in more detail why the PACE trial should be classified as having a high risk of bias (p.127), her reply amounts to little more than “we do not agree”.

    It’s not what Tom or Bob thought, it’s what the guidelines say, and whether or not the trial meets any of its five criteria for being classified as having a high risk of bias. If she thinks that Tom and Bob are wrong she should explain why. But [paraphrasing] “I’m right and you’re wrong so let’s agree to disagree” is not a meaningful scientific response, and I can’t see how Larun or Cochrane will be able to fudge this or any of the other valid concerns when the update is submitted. Having said that, in the world of BPS research one should never underestimate the ability of authors and publishers to get away with presenting incoherent, self-contradictory, evasive, diversionary, ad hominen or straw man arguments as good science.
     
    Last edited by a moderator: Sep 23, 2020
  14. rvallee

    rvallee Senior Member (Voting Rights)

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    Agreed. Anyone with slight competence in how the Web works understands that this effectively buries the update. Every link to the original document will remain and anyone visiting it will have no idea about the issue unless they deliberate seek it out, which they wouldn't since they don't know about it.

    It's the equivalent of placing the notice of demolition in a leaky cabinet in a cramped bathroom in the 3rd basement of the building and declaring that it met criteria for public notice.

    Yet another action that amounts to malpractice and deceit. Politics are destroying the process of science within UK medicine. Completely absurd.
     
  15. JemPD

    JemPD Senior Member (Voting Rights)

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    Yes it's all a bit 'Hitchhikers Guide to the Galaxy' isnt it?

     
  16. Webdog

    Webdog Senior Member (Voting Rights)

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    To be fair, the hyperspatial express route plans were available.
     
  17. Mithriel

    Mithriel Senior Member (Voting Rights)

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    I have been ill for many, many years and have watched the rise and rise of the BPS view, seen their power and duplicity, so forgive me for my cynicism.

    Could this leaked press release have been a way to keep us occupied instead of concentrating on the fact that three quarters of the NICE committee are BPSers?
     
  18. ladycatlover

    ladycatlover Senior Member (Voting Rights)

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    I don't think these people are at all web savvy. So they have no competence as to how the Web works. We should use this. I'm pretty web incompetent, but I think even I am more clued up than they are! I suspect their mistake was truly a mistake. Also suspect they pay their web designers a pittance (after all they ain't med professionals are they?) so if you pay peanuts you get monkeys. (apologies to monkeys)
     
    Barry, andypants and Webdog like this.
  19. rvallee

    rvallee Senior Member (Voting Rights)

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    It was to put pressure on Cochrane and prevent the withdrawal from happening. Which worked.

    Of course the withdrawal would have been significant for the committee's work but then so should its many flaws.
     
  20. rvallee

    rvallee Senior Member (Voting Rights)

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    Oh, well I was talking about Cochrane. I don't know what specialty this is but communications experts in public health understand these things. This is pretty basic stuff. When you deprecate standards you just can't leave the old documents as is. Whether it's web or paper, the principle is the same.

    This was likely deliberate. Guess we'll know if they fix it. If it's a mistake, it would.
     

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