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Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

Discussion in 'Petitions' started by Hutan, Sep 4, 2023.

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Page 28 of 28
  1. rvallee

    rvallee Senior Member (Voting Rights)

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    Not sure where best to post this, but in Australia the RACGP has recently 'updated' their ME/CFS (they use CFS/ME) guideline, changing only a few terms that all mean the same things, and continues to cite the Cochrane review as evidence for GET. They simply rename Graded Exercise Therapy as Incremental physical activity while keeping everything else the same.

    It also cites the PACE trial, in fact directs patients to its manual, which is the main piece of evidence for the flawed Cochrane review. It appears that Cochrane co-founder Paul Glasziou was responsible for it. Glasziou has also signed and promoted the "anomalies" editorial written by PACE ideologues, although it's unclear what precise role he had in it. It's not as if it's hard to find MDs willing to write this crap.

    https://www.s4me.info/threads/australia-racgp-get-for-cfs.24076/#post-528087
     
    rvallee, Apr 24, 2024
    #541
    Michelle, alktipping, Caroline Struthers and 12 others like this.
  2. Trish

    Trish Moderator Staff Member

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    Also Glasziou along with Peter White was one of two advisors to the Cochrane review.
     
    Trish, Apr 24, 2024
    #542
    MEMarge, alktipping, rvallee and 10 others like this.
  3. Hutan

    Hutan Moderator Staff Member

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    And of course Paul Glasziou was Hilda Bastian's PhD supervisor and coauthored a number of papers with her.
     
    Hutan, Apr 25, 2024
    #543
    MEMarge, alktipping, Kitty and 8 others like this.
  4. Sean

    Sean Moderator Staff Member

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    7,249
    Location:
    Australia
    Hard to see how there is going be any real progress at Cochrane any time soon. Going to need a round of retirements at the senior level, at the very least.
     
    Sean, Apr 25, 2024
    #544
    MEMarge, alktipping, Kitty and 8 others like this.
  5. NelliePledge

    NelliePledge Moderator Staff Member

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    Location:
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    Just thought it would be worth flagging up the petition to members who have joined the forum in recent weeks

    we are asking Cochrane to withdraw their review of exercise therapy for CFS.
    the petition is staying open for signatures in the absence of action by Cochrane we’d appreciate your support. More info in the original post on this thread through the link below.

    https://www.s4me.info/threads/petit...l-2019-exercise-therapy-for-cfs-review.35109/
     
    NelliePledge, Apr 29, 2024 at 8:49 PM
    #545
    MEMarge, EzzieD, Caroline Struthers and 12 others like this.
  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Location:
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    I would be more sanguine and concise:
    Hard to see how there is going to be any real Cochrane soon.
    That might leave the review in place but it might lose a bit of gloss coming from a defunct source.
     
    Jonathan Edwards, Apr 29, 2024 at 10:08 PM
    #546
    MEMarge, EzzieD, Caroline Struthers and 11 others like this.
  7. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

    Messages:
    835
    Location:
    Oxford UK
    Today I received an email from Jordi Pardo Pardo (interim Cochrane chair) saying once again Cochrane are not going to investigate my allegation of misconduct because a year ago the then Co-chairs of the board had determined my allegation overlapped with a previous complaint about errors in the review. The outcome of that investigation was that there were no serious errors in the review.

    So I edited and re-submitted my original complaint of misconduct, explaining, once again, that it didn't overlap with my complaint about errors in the review, because the alleged misconduct occurred before the review was published. I used Cochrane's brand new complaints form https://www.cochrane.org/complaints/form.

     
    Caroline Struthers, May 1, 2024 at 10:25 PM
    #547
    Missense, Sam Carter, EzzieD and 21 others like this.
  8. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    3,695
    Thank you for your perseverance @Caroline Struthers

    It definitely feels that Cochrane’s refusal to address the issues around the ME/CFS exercise review is now a deliberate strategy of delay and obfuscation.
     
    Peter Trewhitt, May 2, 2024 at 1:45 AM
    #548
    Missense, bobbler, Sam Carter and 15 others like this.
  9. Hutan

    Hutan Moderator Staff Member

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    That's a terrific complaint, it sets out the facts very clearly. Thank you.
     
    Last edited: May 2, 2024 at 2:46 AM
    Hutan, May 2, 2024 at 2:40 AM
    #549
    Missense, bobbler, Sam Carter and 11 others like this.
  10. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,372
    Location:
    UK West Midlands
    For any members or readers who are doing blogs or social media posts for ME awareness this month please consider a link to the petition https://chng.it/zTZ7vX9Czd

    even if you’ve posted before it is always worth reposting as people miss posts, forget to sign, your post doesn’t get through due to algorithms, you get new followers and so on.

    thanks :thumbup:
     
    NelliePledge, May 3, 2024 at 1:32 PM
    #550
    Sean, Hutan, Missense and 6 others like this.
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