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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 38 of 45
  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Sly Saint, Dec 16, 2024 at 4:01 PM
    #741
    JohnTheJack, Ash, Sean and 9 others like this.
  2. Adrian

    Adrian Administrator Staff Member

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    Adrian, Dec 16, 2024 at 4:36 PM
    #742
    RedFox, JohnTheJack, Ash and 19 others like this.
  3. Adrian

    Adrian Administrator Staff Member

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    Its as if their 'new review' proposal was just a delaying tactic. They were told that it was unethical to keep the old review up whilst they did a new one. But they did.

    It makes me wonder how anyone would ever take Cochrane seriously as an organization.

    One thing I have wondered is if we should go through many more of their reviews pointing out all the issues. I suspect very strongly all their mental health ones are very dodgy.
     
    Adrian, Dec 16, 2024 at 4:41 PM
    #743
    geminiqry, RedFox, JohnTheJack and 19 others like this.
  4. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Yes Cochrane has been sitting on the draft protocol prepared for consultation by the writing group for some three (?) years and has been messing the independent advisory group about since the pandemic. If they ever had genuine intentions in 2019/2020 they very quickly started backtracking and can not be regarded as having been honest brokers for some two or three years.

    I suspect originally they thought a new review would be a good idea until they saw the draft protocol and realised no serious review of the science would ever keep the exercise obsessives amongst them happy.
     
    Peter Trewhitt, Dec 16, 2024 at 4:46 PM
    #744
    RedFox, Deanne NZ, Michelle and 15 others like this.
  5. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    I remember writing over and over to Hilda and Cochrane Editors that as NICE had done a comprehensive review with transparent methods, Cochrane repeating the work was pointless (unless they wanted a different answer to NICE for some unknown reason...??) She said they were definitely doing it whether I liked it or not, because reasons. I need to dig out some of these illogical responses.
     
    Caroline Struthers, Dec 16, 2024 at 4:47 PM
    #745
    RedFox, JohnTheJack, Lidia Thompson and 21 others like this.
  6. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Wherever I see a social media post on Cochrane’s decision I am replying with a link to our petition https://chng.it/R8ctPvywCx
     
    Peter Trewhitt, Dec 16, 2024 at 4:54 PM
    #746
    RedFox, JohnTheJack, Solstice and 17 others like this.
  7. Kitty

    Kitty Senior Member (Voting Rights)

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    And presumably keeping them happy is the only priority.

    It all reminds me of having to sneak away at the changing of the guard in Red Square in 1981, because I was the only person there who found the way the soldiers goose-stepped so funny I was bent double.

    It's amazing what people can decide not to see.
     
    Kitty, Dec 16, 2024 at 5:19 PM
    #747
    Ash, Wonko, Sean and 8 others like this.
  8. Sasha

    Sasha Senior Member (Voting Rights)

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    Just found this info on a page on Cochrane's website, 'Withdrawing articles published in the CDSR [Cochrane Database of Systematic Reviews]':

    As of March 2022, protocols must not be withdrawn for any reason other than serious error, scientific misconduct, or serious breach of CoI policy (see definitions under 'Cochrane reviews', above).
    ​
    On this page, 'Serious errors in published articles':

    A serious error has occurred when: Following the conclusions of the review could result in harm to patients or populations of interest (other than known adverse effects).
    ​
    Couldn't be clearer.
     
    Sasha, Dec 16, 2024 at 5:34 PM
    #748
    JohnTheJack, Michelle, Ash and 17 others like this.
  9. Hutan

    Hutan Moderator Staff Member

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    It's not actually true that there has been no new evidence.

    The belatedly published Crawley paediatric paper springs to mind
    Graded exercise therapy compared to activity management for paediatric [CFS/ME]: pragmatic randomized controlled trial, 2024, Gaunt, Crawley et al.
    That study also reported the adverse event of a suicide attempt that, from memory, was actually acknowledged as related to the therapy.

    I think there have been others, including more evidence of harm to mental health from the approach, and of course the petition where something like 75 ME/CFS and Long Covid patient charities from something like 25 countries essentially rejected GET. Perhaps we should make a thread of all the relevant research since 2014, or whatever the period the Larun et al review considered.
     
    Hutan, Dec 16, 2024 at 5:42 PM
    #749
    RedFox, JohnTheJack, Deanne NZ and 18 others like this.
  10. Yann04

    Yann04 Senior Member (Voting Rights)

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    I don’t particularly like speculating on this, but my curiosity forced me to ask, could the shocking adverse effects found in Crawley’s study have made her rethink the whole GET narrative, and subsequently explain her cryptic withdrawal from ME research and “treatment”?
     
    Yann04, Dec 16, 2024 at 5:47 PM
    #750
    RedFox, Deanne NZ, Missense and 6 others like this.
  11. Hutan

    Hutan Moderator Staff Member

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    @Medfeb, is the author group considering doing the review anyway, or does the presence of Cochrane employees mean that the author team composition would have to change? I guess Cochrane has delayed things enough that the Larun et al review is the one that forms part of the evidence base considered by the Australian ME/CFS Guideline process.

    Is there any clarity on who owns the protocol? I guess a non-Cochrane review could still be done by a new team. As the years go by, a review published in 2019 has to look pretty irrelevant, especially if there is a newer one.

    I do think that Cochrane giving up on the new review makes any complaint about them e.g. to the Charity Commission stronger. they made a clear commitment to replace a review they acknowledged as not fit for purpose, and they delayed and delayed and then said they weren't doing that.
     
    Hutan, Dec 16, 2024 at 5:50 PM
    #751
    RedFox, Deanne NZ, Ash and 14 others like this.
  12. rvallee

    rvallee Senior Member (Voting Rights)

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    I assume that this was always the plan, so that it changes nothing. They just lied to us because they know there won't be any consequences. In fact the only way they would face significant backlash would be if they had done the right thing, and they never had any intention of doing that.

    The fact that they didn't even bother justifying it says it more clearly than anything can. Just a simple "fuck you, that's why".

    I'm a bit confused at Davenport's mention of a rejected protocol. Unless I missed it, I didn't realize he was part of the IAG. So was this an independent submission from a group interested in doing a review? Which is the typical way Cochrane does it.

    Anyway, I hope we will have information about what went on now that the NDAs don't matter. I pretty much assume that neither Cochrane nor Bastian did anything at all. Just ran out the clock. Regardless, this trash organization remains common street garbage.
     
    rvallee, Dec 16, 2024 at 5:51 PM
    #752
    Binkie4, Deanne NZ, Ash and 9 others like this.
  13. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    This was the basis of my request to Cochrane to withdraw both the Exercise and CBT reviews. https://healthycontrolblog.wordpress.com/2020/11/24/request-to-withdraw-cochrane-reviews/ scroll down to read the post
    They refused
    When I complained about the refusal to withdraw the reviews they convened a special panel which decided there were no serious errors
    https://healthycontrolblog.wordpress.com/2021/02/10/cochrane-refuse-to-withdraw-cfs-reviews/

    Sorry the blog is very badly laid out - you have to scroll down to read the entries.
     
    Caroline Struthers, Dec 16, 2024 at 6:05 PM
    #753
    JohnTheJack, Deanne NZ, Ash and 16 others like this.
  14. Adrian

    Adrian Administrator Staff Member

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    Have you tried contacting Susan Philips who was appointed chair of Cochrane July this year
    Welcome to Dr Susan Phillips, the new Chair of the Governing Board | Cochrane Community
     
    Adrian, Dec 16, 2024 at 6:12 PM
    #754
    Ash, Sean, bobbler and 5 others like this.
  15. Sasha

    Sasha Senior Member (Voting Rights)

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    Sasha, Dec 16, 2024 at 6:12 PM
    #755
    Ash, Wonko, Sean and 7 others like this.
  16. Trish

    Trish Moderator Staff Member

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    Davenport was on the review writing group appointed by Cochrane to write the new protocol and review.
     
    Trish, Dec 16, 2024 at 6:22 PM
    #756
    Binkie4, petrichor, Ash and 10 others like this.
  17. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    Caroline Struthers, Dec 16, 2024 at 6:23 PM
    #757
    Deanne NZ, Ash, EzzieD and 16 others like this.
  18. Trish

    Trish Moderator Staff Member

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    Trish, Dec 16, 2024 at 6:26 PM
    #758
    Deanne NZ, Lou B Lou, Missense and 5 others like this.
  19. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    The email by Cochrane to the authors states states:
    Would be interesting to read what was said and what the arguments agains the new review were. Would this be possible to request using FOI?
     
    ME/CFS Skeptic, Dec 16, 2024 at 6:35 PM
    #759
    Deanne NZ, Michelle, Arvo and 10 others like this.
  20. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    I think we previously concluded that as they were a charity, in the UK they are not subject to the FOI legislation. The only way around this would be if the issue asked about related to work funded or commissioned by a body that was subject to the FOI legislation, when the request would have to go to that body for them to find out what happened.
     
    Peter Trewhitt, Dec 16, 2024 at 6:51 PM
    #760
    RedFox, JohnTheJack, Deanne NZ and 15 others like this.
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