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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.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I imagine it will be kept updated a lot better than the ME/CFS one, (but that wouldn't be hard).
    I see that NICE are using it (the Corona one) although only after they have done their own searches:

    https://www.nice.org.uk/process/pmg35/chapter/finding-evidence

    "The guideline will be updated as the situation changes. The process for review and updating is being developed."
    I'm guessing for Corona they will take less than 2 years if anything needs urgently updating.
     
  2. NelliePledge

    NelliePledge Moderator Staff Member

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    oh we’re all on tiptoes waiting to read about the new choreographies @Caroline Struthers :whistle:
     
  3. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    Hi everyone
    Today I got a response from Hilda - see attached
     

    Attached Files:

    Simbindi, MSEsperanza, Joh and 9 others like this.
  4. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    From the response as to why Karla Soares-Weiser will.have the final say should it not be possible to come to an agreement.

    Given the topic and the entrenched views of some authors, the strength of their vested interests I am a bit puzzled as to why Hilda is so confident.

    As for the authors knowing and agreeing to submit to the process in advance, we know they've made all the right noises at the start and when push comes to shove they throw their toys out of the pram and get away with it.

    Perhaps I am misunderstanding but this seems naive to me. I am not reassured.
     
    Simbindi, Cheshire, JemPD and 5 others like this.
  5. rvallee

    rvallee Senior Member (Voting Rights)

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    Same. I still hope Bastian will do us good but it does not appear that Cochrane is capable, as an organization, of doing this right.

    I would frankly much rather they retract everything and frankly not ever publish a damn thing about ME. pretend we don't even exist, I have zero confidence in this organization or its capabilities, whatever they are.
     
    Simbindi, inox, Cheshire and 6 others like this.
  6. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    I agree 100% with this!
     
    Simbindi, inox, MEMarge and 3 others like this.
  7. Trish

    Trish Moderator Staff Member

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    Has anything been announced about who is going to be on the Independent Advisory Group led by Hilda Bastian, and who is going to carry out the review?
     
  8. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    Nope. But the review will be carried out by central Cochrane people, rather than the usual volunteer teams (like Larun and co.) who rock up to propose a review title. I think the group called "Cochrane response" https://community.cochrane.org/organizational-info/people/central-executive-team/cochrane-response will be doing it. I can't quite remember, but they announced this in the presentation at CMRC in March. This means they are unlikely to have any knowledge of ME, which could be both a good thing and a bad thing. I guess there will be mix of editor types and statistics/systematic review methods people. They will be neutral and uninterested in the car crash of awfulness that is the old review, as it seems is everyone in Cochrane.
     
  9. Kalliope

    Kalliope Senior Member (Voting Rights)

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  10. Andy

    Andy Committee Member

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    Code:
    https://twitter.com/hildabast/status/1260838431409623040
    https://twitter.com/user/status/1260838431409623040
     
  11. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    https://twitter.com/user/status/1260105907108638721


    Atle Fretheim is Lillebeth Larun's (author of Exercise for CFS review) boss. Isn't Hilda aware he is the person who refused to allow David Tovey to withdraw the Exercise for CFS review despite David Tovey almost begging him to before he retired? I will send her the correspondence, just in case she wasn't aware of it.
     
  12. rvallee

    rvallee Senior Member (Voting Rights)

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    The responses from Cochrane are infuriating but this is a solid base of constructive criticism.

    First things first: it's going in the right direction, which is a refreshing change from haphazardly collapsing into imaginary dimensions that was the starting point of the current disaster.

    Still, I can't see a single valid reason to keep the current reviews published, they are simply invalid opinions. Absolutely none. I will remain highly skeptical of Cochrane's motives right until they make the first positive move on that front. You know, the whole "first do no harm" slogan thingy. Nice slogan. I like that slogan. But without backing it with action, it's just that, a nice slogan. As with the law, enforcement is 9/10 of it.
     
    Hutan, Simbindi, ladycatlover and 7 others like this.
  13. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    This is just a nobody's opinion but even with good intentions I don't see Cochrane as able to do the right thing regardless.

    I don't know much about all the details here but from my metaphorical seat up here in the bleachers what I do see is that Cochrane are too far down the road of imbeded corporate interests so that any product is now just a vehicle to the end of profit bottom lines. All of the science issues that would otherwise matter are now at best, secondary in this model.

    Maybe I'm wrong. Would like to be. Would be interesting to know who else might be taking issue/what other problems there might be presently with what Cochrane is churning out.
     
  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    MEMarge, inox, rvallee and 3 others like this.
  15. Andy

    Andy Committee Member

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    https://twitter.com/user/status/1261227914923773953


    The S4ME critique was sent to the IAG email address yesterday.
     
  16. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Since others are doing the same, I thought I'd post what I sent to Hilda and the IAG:
     
    Last edited: May 17, 2020
    MEMarge, wdb, Simbindi and 24 others like this.
  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  18. Trish

    Trish Moderator Staff Member

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    Excellent, @Lucibee, thank you for doing that.
     
    Cheshire, Chezboo, Sean and 3 others like this.
  19. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    Attached is recent correspondence between me and Hilda, initiated by me after the post-COVID fatigue advice leaflets published and then withdrawn by NHS Trusts, notably Oxford Health.
     
    MEMarge, Simbindi, Chezboo and 10 others like this.
  20. JemPD

    JemPD Senior Member (Voting Rights)

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    @Lucibee would you be ok with me copying & printing that out/showing it to people please?. A while back I was trying to explain the problems with the CFQ to a friend who is a scientist, but I struggled. Would appreciate being able to give them this - it's such a succinct explanation, written in a professional manner that's adds credibility - lol my statement that 'it's a useless piece of rubbish', didn't really fly! :D
     
    Simbindi, Hutan, MSEsperanza and 9 others like this.

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