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Cochrane Exercise Review Withdrawn - Individual Patient Data

Discussion in 'Psychosomatic news - ME/CFS and Long Covid' started by RuthT, Dec 8, 2018.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    but what happens to all the other 'research' that relies on it to justify a) their existence and b) whatever their reported findings are (ie that they correlate with PACE).?
     
    WillowJ, EzzieD, Nellie and 4 others like this.
  2. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Yes, the lack of communication is quite disappointing.
     
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  3. NelliePledge

    NelliePledge Moderator Staff Member

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    Yep seems they have succeeded in kicking it into the long grass again
     
    MEMarge, WillowJ, Sean and 2 others like this.
  4. Esther12

    Esther12 Senior Member (Voting Rights)

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    I thought that recent response to the complaint made about Cochrane's handling of CFS sounded terrible. I'm expecting the worst from them.
     
    MEMarge, rvallee, wdb and 1 other person like this.
  5. inox

    inox Senior Member (Voting Rights)

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    While we wait, a comment by Larun about the individual patient data review - on an article by Helmfrid og Edsberg, in 2017. (google english - swedish)

    Now gone - withdrawn before publishment by the editorial group: "This protocol has been withdrawn and it is no longer being progressed to a Cochrane review." ;)

    Have there been any comment by her, or others of the authors, about this?


    New overview on the way
    2017-09-28 13:43

    As the author of the Cochrane review criticized in the article above, we have been offered the opportunity to comment on the criticism in Läkartidningen. The arguments against our overview taken up in Läkartidningen are well known. We have previously responded to most in the debate department that accompanies our overview. We have also tried to argue against the criticism in more open forums, but have very bad experiences with this strategy.

    A new Cochrane review based on individual patient data is published within a few months. In this, we will take into account the criticism and show the consequences of different methods of analysis. In view of our previous experience of public debates, we do not see ourselves served by participating in them before the IPD overview is published.

    For the authors of the overview:

    Lillebeth Larun, reseacher / assistant professor, Norwegian Institute of Public Health, Division for health services Nydalen, Oslo
     
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  6. Esther12

    Esther12 Senior Member (Voting Rights)

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    So because they've been unable to defend their work they've consciously adopted a policy of avoiding debate?

    How is this mentality seen as acceptable?
     
  7. inox

    inox Senior Member (Voting Rights)

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    It's strange, as everyone following the 'news in scandinavia' thread probably have noticed, there is a rather strong culture for public debate over here.
     
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  8. Cheshire

    Cheshire Moderator Staff Member

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    Posts relating to the ME/CFS GET review temporarily withdrawn have been moved to the relevant thread.
     
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  9. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    I missed @Caroline Struthers' comment from 2018 and Larun's response to that protocol. Seems that a link hasn't been posted yet?

    https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD011040.pub2/read-comments

    L. Larun:
    Also, someone reminded me of the remarkable fact that the protocol was co-authored by, among others, some PACE PI and Paul Glasziou, one of the big figures at Cochrane and co-author of the Cochrane Handbook for Systematic Reviews of Interventions:

    https://methods.cochrane.org/gradeing/resources
     
    Last edited: Aug 14, 2020
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  10. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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  11. Mithriel

    Mithriel Senior Member (Voting Rights)

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    So they could neither "confirm nor deny". It is disturbing to find CIA tactics being used against sick people by the people who earn a living by claiming to help them.
     
  12. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    From Flottorp's et al Lancet comment on the new NICE guideline:

    Edit:
    KGB = Kjetil G Brurberg
    HK = Hans Knoop
     
    Last edited: Feb 16, 2022
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  13. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    There's nothing added on the withdrawn protocol's page indicating a planned update.

    But this was only on exercise, not on CBT. So there seem to be two reviews in the making, but not sure if they're still being edited by Cochrane.

    However, I realized only now that Knoop is also a Cochrane author. I found two reviews co-authored by him:


    Severe fatigue after treatment for childhood cancer (Cochrane Review), 2020
    Sylvia van Deuren, Amilie Boonstra, Eline van Dulmen‐den Broeder, Nicole Blijlevens, Hans Knoop, Jacqueline Loonen

    https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD012681.pub2/full


    Psychosocial interventions for fatigue during cancer treatment with palliative intent (Cochrane Review), 2017
    Hanneke Poort, Marlies Peters, Gijs Bleijenberg, Marieke FM Gielissen, Martine Margaretha Goedendorp, Paul Jacobsen, Stans Verhagen, Hans Knoop

    https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD012030.pub2/full

    Forum thread here.
     
    Last edited: Feb 16, 2022
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  14. Lucibee

    Lucibee Senior Member (Voting Rights)

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    I'm a little confused as to what the status is now?

    The IPD review has recently been cited in the JNNP Anomalies paper in the last paragraph as thus:

    So they seem to have a new protocol, but what does this actually mean in practice?

    They also link to the Cochrane statement here: https://www.crd.york.ac.uk/PROSPEROFILES/107473_PROTOCOL_20211031.pdf

    The main outcome measures are FS and FSS - but is FS (fatigue scale) Chalder's FS (CFQ), or something else? I mean, it has to be, doesn't it?
    What has happened to all the evidence we sent in about the CFQ to the Cochrane IAG? Was it just thrown into a big black hole?
     
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  15. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    According to that page, they have only completed the preliminary searches.
     
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  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    A dead parrot comes to mind.
     
  17. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    The protocol for IPD reviews was withdrawn after very critical peer review. Although they don't say that.
    https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD011040.pub2/full
    Did they say in the JNNP Anomalies paper that it was still coming?!!! That needs to be corrected.
     
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  18. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    They write "The forthcoming individual patient data meta-analysis of exercise therapy trials for CFS/ME is a further step in the right direction.

    The reference is this page https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42018107473
     
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  19. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    Ah yes, I see. They have re-registered the protocol after Cochrane refused to publish the full review. But they do mention the Cochrane protocol at the bottom of the record
    upload_2023-7-30_20-57-56.png
     
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  20. Trish

    Trish Moderator Staff Member

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    It looks like the objection to the now withdrawn protocol was at least in part because the team doing it included White, Sharpe, Chalder, Weardon etc. ie people whose research was to be reviewed.

    It seems that the Norwegian trio, Larun, Brurberg and Kristoffersen are now the author team for the new review and the have started work on it. The date of update is August 2022 and it says it's ongoing.
    https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=107473&VersionID=1771625
     
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