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

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by MEMarge, Oct 2, 2019.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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  2. Lucibee

    Lucibee Senior Member (Voting Rights)

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  3. obeat

    obeat Senior Member (Voting Rights)

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    Is anyone able to attend the CMRC conference and ask questions of Karla SW?
     
    Invisible Woman likes this.
  4. Andy

    Andy Committee Member

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  5. Cheshire

    Cheshire Moderator Staff Member

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    Posts discussing the new independant review of the Cochrane review on exercise therapy and ME/CFS have been moved/or copied to a new thread.
     
    Hutan, ladycatlover, Liessa and 2 others like this.
  6. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    Latest timeline of link-gate - correspondence with Rachel Marshall, Senior Editor, Cochrane

    It's so confusing. They changed the conclusions of the previous version of the review in August. Then they republished it (with presumably lots of other changes to the text) in October 2019. With a big flag at the top saying "conclusions changed". This has now gone, never to return I guess. I almost feel like it's deliberate...

    Wednesday 12th Feb 2020

    Dear Rachel

    Please can you point me to where it’s still recorded that the conclusions changed again between the note on 19 August 2019 (on version 7 published in 2017) and version 8 published on 2 October 2019? If the conclusions in fact didn’t change again between August 2019 and October 2019, please let me know.

    Many thanks

    Caroline

    Friday 14th Feb 2020

    Dear Caroline,

    There was no version of the review published in August 2019. The note written in August 2019 relates to the review published in October 2019, but there was some delay between the note being written and the review being published. The published review on the library has now been amended to clarify that the note written in August 2019 refers to the changes made to the October 2019 version. I have also passed on my comments to the team working on the Cochrane Library website about the potential for mismatching dates to cause confusion for readers, which will be considered in a future assessment of versioning of Cochrane Reviews.

    I hope this addresses your points. Just to let you know I am now on leave, returning to the office on Monday 24th February.

    With best regards, Rachel


    Friday 14th Feb 2020

    Thanks for your efforts Rachel

    It’s certainly confusing, and it’s a shame that the prominent “conclusions changed” flag has now disappeared from the review because, as you pointed out, the conclusions didn’t change between the addition of the note with the link and the conclusions changing in August/October. The note about the link was not “an amendment” to the review. Please can you explain why this couldn’t have been avoided by using the “Linked to the review” facility? I repeatedly suggested this, but I never got an answer as to why it was not possible. I don’t even know if you understood what I was suggesting because every time it was ignored. I am happy to accept you can’t do it, but not without a, preferably sensible, reason.

    There is now another statement about the review which needs to be linked to it. https://www.cochrane.org/news/appointment-lead-independent-advisory-group. I dread to think what confusion will ensue if I ask for that to happen. Would I have to submit feedback again? I don’t think either you or I could face it. Please consider using the “Linked to this review” facility for both statements, or let me know why that is not possible.

    The systems around versioning definitely need updating and I am grateful you have passed on comments about the confusion it causes for readers

    Best wishes

    Caroline
     
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Looking forward to the 'This review has been withdrawn' notice.

    If that ever happens, will it just be a little note somewhere or will the review actually be taken down?
     
  8. inox

    inox Senior Member (Voting Rights)

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    For the Chinese herbs one that got withdrawn, the page now looks like this:

    https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD006348.pub3/full/es

    You can access the review still, but only via the version controll section. (At least that’s what I’m able to find) The main page is clearly marked, and has the reasoning for withdrawing.
     
  9. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    I am fairly sure the only reason the Exercise one didn't get withdrawn is because the authors didn't agree to let it happen
     
  10. Adrian

    Adrian Administrator Staff Member

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    Which just demonstrates a big weakness for Cochrane. It shows that there is no editorial control as the authors ultimately have power to decide if mistakes remain published.
     
  11. rvallee

    rvallee Senior Member (Voting Rights)

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    Bit of a problem to the idea of science being self-correcting if that process is deliberately broken.

    Science: we must be self-correcting

    Cochrane: well, unless you don't feel like it then it's OK let's not hurt feelings let's hurt people instead so we don't look bad?

    Especially considering the authors of the review essentially graded their own work, after having written their own questions, then somehow changed the answer keys mid-test but were given approval to change those answers and they still count as a perfect score (because 60/100 is now a perfect score, of course), somehow actually having answered using material from an unrelated discipline but that's OK because the classroom change was approved by the school administrators.
     
  12. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Has there been any movement with regards re allocating ME to a different Cochrane group from the The Cochrane Common Mental Disorders Group?
     
    ladycatlover, Hutan, MEMarge and 7 others like this.
  13. Barry

    Barry Senior Member (Voting Rights)

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    Good question.
     
  14. dave30th

    dave30th Senior Member (Voting Rights)

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    2kidswithME, EzzieD, ukxmrv and 10 others like this.
  15. dave30th

    dave30th Senior Member (Voting Rights)

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    and because undoubtedly very, very powerful people were yelling behind the scenes.
     
    2kidswithME, EzzieD, ukxmrv and 20 others like this.
  16. chrisb

    chrisb Senior Member (Voting Rights)

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    That is now considered best practice.
     
    feeb, EzzieD, Amw66 and 10 others like this.
  17. Barry

    Barry Senior Member (Voting Rights)

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    Yes. I would not be at all surprised if very persuasive words and 'encouragements' were not exercised pretty high up in the corridors of power, given how much money it saves (in the term of one government anyway) to foster the cheapskate treatment options. In fact I'd be amazed if it were not happening. All very low key of course, and fully loaded with plausible deniability.
     
    2kidswithME, Sean, ukxmrv and 4 others like this.
  18. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    I have suggested on Twitter it go to the Cochrane Work Group - so the review will focus on objective outcomes. The editor of that group (Jos Verbeek) is my last remaining friend in Cochrane. Even he hasn't really looked at it properly. He seems keen though and he's sensible. https://work.cochrane.org/
     
  19. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    I was looking forward to you meeting her too. I would have paid A LOT for tickets to see it in fact. I met her in July along with two patients. It was very amicable. I was greeted with a hug, no less. Before she then asked me whether we'd ever met before. Obviously we had, which was why I let her hug me...didn't want to appear rude. And since then she's ignored pretty much all my emails. It's like the meeting never happened. Weird.
     
  20. Barry

    Barry Senior Member (Voting Rights)

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    Hmmm ... let's hope that doesn't indicate all show and no action.
     

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