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Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

Discussion in '2021 Cochrane Exercise Therapy Review' started by Lucibee, Feb 13, 2020.

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Page 121 of 124
  1. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    The problems in this process have been made much worse by failure for the planned wider consultations to emerge so far. My memory is not reliable but my understanding was that the IAG was to produce the protocol for developing the new exercise review that would include ways for engaging with the wider patient community and that that protocol would also be the subject of this wider debate. Obviously there was an initial intention to communicate regularly on what was happening, as illustrated by Hilda Bastian’s monthly updates up-to mid 2021. But the mechanisms for wider consultation were not established before the process broke down.

    Because there has subsequently been an apparent complete clamp down by Cochrane on any information about this other than saying there will be a report in this very elastic ’few weeks’. something has gone wrong and I agree that it is currently profoundly unfair of Cochrane to seemingly impose a gag order on the IAG members.

    My personal feeling is there is an internal conflict within Cochrane that is part of the GET/CBT as curative treatment true believers backlash, particularly against the new NICE guidelines. The updates on the planned Cochrane exercise review stopped in the Summer of 2021 at the same time as the various British medical Royal Colleges were trying to block the publication of the new ME/CFS Guidelines. Individuals that were fighting NICE have continued a rearguard action based on unevidenced assertions that exercise helps some people so it would be unfair not to offer it to everyone (even if many may experience harm), opinion pieces passed off as research articles and citing the flawed 2019 Cochrane review. These true believers some of whom have strong links with Cochrane have a vested interest in the 2019 Review remaining active within the Cochrane Library as long as possible.
     
    Last edited: Nov 1, 2023
    Peter Trewhitt, Nov 1, 2023
    #2401
    Amw66, rvallee, Sean and 8 others like this.
  2. sonya

    sonya New Member

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    Hello! I'm new here but have had ME/CFS for 20+ yrs.

    A potential link could be Peter Gladwell. BACME's website shows that he is a board member, although this isn't included in his IAG bio.
     
    sonya, Nov 2, 2023
    #2402
    Hutan, bobbler, Ash and 10 others like this.
  3. Trish

    Trish Moderator Staff Member

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    Hi @sonya, welcome to the forum. Yes, we're aware that Peter Gladwell is part of BACME as well as being on the IAG, so presumably has been able to tell them that the process has re-started. I just wish the IAG itself, in other words Hilda or someone else deputising for her, had continued providing updates, even if only to tell the public there would be a delay, why and for how long.
     
    Trish, Nov 2, 2023
    #2403
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  4. rvallee

    rvallee Senior Member (Voting Rights)

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    It makes sense if the plan is for there to be no resolution and waste time. Everything does, in fact. If it isn't the plan now, I don't see how it would be any different. The communication lockdown especially, including from Bastian, who apparently is the only person authorized to speak publicly, and has not said a single word for 2 years.

    At this point, Cochrane has more than earned presumption of guilt.
     
    rvallee, Nov 2, 2023
    #2404
    Lou B Lou, Hutan, obeat and 8 others like this.
  5. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Just had an update email:
    https://community.cochrane.org/orga...older-engagement-high-profile-reviews-pilot-3

     
    Last edited: Nov 10, 2023
    Lucibee, Nov 10, 2023
    #2405
    alktipping, Binkie4, SNT Gatchaman and 11 others like this.
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Sly Saint, Nov 10, 2023
    #2406
    alktipping, Binkie4, bobbler and 5 others like this.
  7. Trish

    Trish Moderator Staff Member

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    Moved from the petition thread.

    Quite a lot to take in. From a first reading, delays were caused by first the pandemic taking some of the Cochrane employed people off this project onto Covid related projects, then a major complaint from the supporters of GET about the plans for a new review, as well as complaints in the other direction, asking as we have, for the 2019 review to be removed. Such are the beaurocratic processes of Cochrane that it seems to have taken a year or more to decide on each of these. And some restructuring within Cochrane itself added to delays.

    We will need to review how this affects our campaign.
     
    Last edited: Nov 10, 2023
    Trish, Nov 10, 2023
    #2407
    Simon M, Sean, alktipping and 8 others like this.
  8. Trish

    Trish Moderator Staff Member

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    So why didn't they tell us that they had already had a complaint asking for the 2019 review to be withdrawn and had taken a year to consider and dismiss it?
     
    Trish, Nov 10, 2023
    #2408
    Kirsten, Simon M, Sean and 9 others like this.
  9. Hutan

    Hutan Moderator Staff Member

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    On the question of the existing review:
    I don't think this is good enough. It seems that Cochrane doesn't think the existing review is bad enough to remove.


    On the question of the 'recovered person' on the IAG:
    This is very good news I think, and it's a relief to hear that Paul Garner did not take the spot. This gives me some assurance that Hilda is trying to resist BPS pressure and follow the science. It sounds as though there is still a spot on the IAG to fill - and it seems that the role will probably go to a BPS proponent.


    This is interesting. It sounds to have come from the BPS side, aiming to stop the new review process, and it seems to have substantially delayed things.
     
    Last edited: Nov 10, 2023
    Hutan, Nov 10, 2023
    #2409
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  10. Andy

    Andy Committee Member

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    I have no understanding why receiving a complaint then should mean that you shut all communication down completely. And that it should take "multiple committees" to eventually reach a decision show how dysfunctional Cochrane obviously are.
     
    Andy, Nov 10, 2023
    #2410
    Kirsten, Ash, Chezboo and 26 others like this.
  11. JemPD

    JemPD Senior Member (Voting Rights)

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    Actually I wonder if it wasnt a blessing in disguise to go silent. Because although the wait has been awful, at least it makes it more difficult for the BPSers to say that the complaint response was influence by 'ME activists', because nobody knew!
     
    JemPD, Nov 10, 2023
    #2411
    Simon M, Sean, alktipping and 11 others like this.
  12. Trish

    Trish Moderator Staff Member

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    And worse than that, the whole project is shut down for, it seems 2 years, by the fact that complaints were being considered in Cochrane's ridiculously beaurocratic way. Considering a complaint should have had no impact on the process of preparing a new review proceeding. It's utterly ridiculous.
     
    Trish, Nov 10, 2023
    #2412
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  13. Midnattsol

    Midnattsol Moderator Staff Member

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    And how much confidentiality should be granted in such a system?
     
    Midnattsol, Nov 10, 2023
    #2413
    mango, Sean, alktipping and 7 others like this.
  14. dave30th

    dave30th Senior Member (Voting Rights)

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    I suppose if the complaint had been upheld, the continuing work on the process would have been for nothing? But staying silent for a year or two while it was being investigated internally seems a bit extreme. I'd certainly like to see the details of the complaint and how it was adjudicated.
     
    dave30th, Nov 10, 2023
    #2414
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  15. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I guess that the complaint is quite likely to have been from Flottorp, who has held a senior position within Cochrane. But the more senior the person was, the stronger the argument for a rapid decision at the highest board level.

    Keeping it confidential is hard to justify but one can now see why IAG members might have had difficulty breaking ranks.

    Cochrane comes out of it with zero credibility as before.
     
    Jonathan Edwards, Nov 10, 2023
    #2415
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  16. Andy

    Andy Committee Member

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    Frankly, I think that Cochrane owe it to the community to publish the details of the complaint, given that while they talked endless about how to deal with it, they paused progress on the update and went radio silence.
     
    Andy, Nov 10, 2023
    #2416
    Ash, mango, Sean and 15 others like this.
  17. Trish

    Trish Moderator Staff Member

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    I suspect the complaint was from all the 51 signatories of the anti NICE brigade paper led by White. And it will have been long and detailed in order to cause as much delay as possible. NICE had the sense to see through them. Sadly Cochrane is in their pockets.
     
    Trish, Nov 10, 2023
    #2417
    Caroline Struthers, Sean, alktipping and 18 others like this.
  18. Hutan

    Hutan Moderator Staff Member

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    I think the risk is that people will feel grateful to Cochrane for resisting the BPS attempt to shut the new review process down, and grateful about a promise that the editorial note on the old review will be strengthened.

    And that will distract from the fact that the old review is still there in the Cochrane Library, still propping up the idea that exercise therapy is a valid treatment. And from the fact that the new review is still a long way off being completed and there's no guarantee that it will be evidence-based if and when it ever eventuates. It's far more likely to be some sort of a compromise - the 'middle-ground' that a Cochrane editor has suggested is the desirable outcome.

    As @cassava7 pointed out, this paper may help us demonstrate that the old review is 'in error'.
    (…) overestimation of effects in randomized trials that fail to optimize randomization and blind patients and outcome assessors, Wang, Guyatt+, 2023
    And surely an inadequate assessment of harm is also a major error?

    If a review is still causing serious harm after multiple edits and the rules don't allow for retraction, there's something badly wrong with the rules.
     
    Hutan, Nov 10, 2023
    #2418
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  19. Simon M

    Simon M Senior Member (Voting Rights)

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    Simon M, Nov 10, 2023
    #2419
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  20. CRG

    CRG Senior Member (Voting Rights)

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    Link to the bios doesn't as yet contain Katherine Cheston's details - here's her Durham staff bio: https://www.durham.ac.uk/staff/katharine-a-cheston/
     
    CRG, Nov 10, 2023
    #2420
    Simon M, Binkie4, bobbler and 2 others like this.
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