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.

  1. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    I agree that Hilda is in an invidious position, but the current update, though drafted and to her credit very much pushed through by Hilda, is now an official statement by Cochrane, unlike Hilda’s personal blog, and so should be responded to as representing Cochrane’s current position.

    Also it reveals nothing about what the group drafting the actual new review has done, is currently doing or what their planned timescale is.

    [note added - “The views expressed in this report are those of the author, and are not necessarily shared by the Independent Advisory Group (IAG), the review team, or Cochrane.” I missed this caveat when I drafted this post, so Cochrane are not even standing behind this update by Hilda even though she had to jump through their hoops to get it put up on the site.]
     
    Last edited: Dec 20, 2023
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  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Last edited: Dec 20, 2023
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  3. rvallee

    rvallee Senior Member (Voting Rights)

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    Some day, we may even get updates about things that happened, rather than about how things in the future, which were supposed to have already happened, may happen, some day.

    Cochrane simply continues to demonstrate its uselessness and inability to get the most basic things right.
     
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  4. NelliePledge

    NelliePledge Moderator Staff Member

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  5. Trish

    Trish Moderator Staff Member

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    There is some clarification of this in the latest response from Cochrane to out letters, posted here:
    https://www.s4me.info/threads/petit...rapy-for-cfs-review.35109/page-23#post-508710
     
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  6. Medfeb

    Medfeb Senior Member (Voting Rights)

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    It could simply mean clinicians who care for people with ME in their medical practice. Lily Chu is on the IAG and is an MD but she does not have a clinical practice so is not "working with patients" in that sense.
     
  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Judging from the other clues we have I presume this is correct.

    I find it hard to see why such people need be on an independent advisory group. The concept of 'stakeholder' here continues to worry me. If it means a patient whose interest is in getting the right treatment it makes sense. But in what sense is a medical practitioner a 'stakeholder' other than in making money from using treatments that might not be valid? As a physician working for a government health system I did not consider myself a 'stakeholder'. The whole point of Cochrane was, I thought, to exclude stakeholding qua vested interest.

    I was not allowed to sit on the NICE committee because I was not a 'stakeholder' in this sense, despite Ilora Finlay having neatly explained why members should not be such stakeholders. It seems fairly clear that I would not fit the bit here either!
     
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  8. Trish

    Trish Moderator Staff Member

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    I have just written to Hilda with a couple of suggestions of doctors who treat pwME and who people here respect. I hope she can get one of them.
     
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  9. JemPD

    JemPD Senior Member (Voting Rights)

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    thanks for doing that.
    It'd be amazing if they got someone good.

    But i'd say thats almost certainly not what is being looked for. I'd say what is being looked for is someone who already believes in, is a huge fan of, and uses GET in the practice "working with" CFS patients. Someone who knows "from their own experience" that 'it works for some', and therefore wont be too 'biased' towards needing the evidence to be of decent quality in order to recommend it.

    I assume the risk of perceived bias is the same as the panic over the "bias" in the NICE committee, when 5 patien reps on a committee of 21 was clearly a massive bias towards patient opinion.
     
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  10. Amw66

    Amw66 Senior Member (Voting Rights)

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    It's another ship being steered to a destination.
    The deckchairs keep moving but they're still there .
     
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  11. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    After the latest update, have posted on Hilda's talkpage - awaiting moderation
    upload_2023-12-21_23-45-8.png
     
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  12. Andy

    Andy Committee Member

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  13. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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  14. Trish

    Trish Moderator Staff Member

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    Last edited: Jul 19, 2024 at 12:06 PM
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