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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. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    I have realized that the new NICE/Cochrane collaboration is a two-way thing. So NICE can supply data to Cochrane to inform its reviews as well as Cochrane supplying NICE to inform its guidelines.
    upload_2022-3-8_16-17-25.png

    So I will suggest NICE share their review data with Cochrane to inform the new Cochrane Review - as long as that doesn't mean re-doing the GRADE analyses. Perfect for the "international" audience who don't take any notice of NICE.
     
  2. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    No. They say their products are "trusted", but not that they are "trustworthy". Clever!
     
  3. Mithriel

    Mithriel Senior Member (Voting Rights)

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    Politics and medicine have become like QVC*, you have to watch for what is not being said.

    *they all may mean well.
     
  4. Adrian

    Adrian Administrator Staff Member

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    I think it would be interesting if there were legal liabilities associated knowingly with publishing poor medical advice. It would probably lead to significant changes in the way Cochrane do things and Journals would need to take corrections seriously
     
  5. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    They are very careful. Systematic reviews are categorically NOT advice. In the same way journal articles reporting a trial or other type of investigation on the effectiveness of a treatment are not advice. They are an analysis/synthesis of "the best available evidence" however bad that evidence is. They do not make much of a song and dance if there is no evidence, or if the evidence is full of holes (eg. no data on harms), or if it's difficult to find and badly reported. They fudge it if the evidence is poor - using pseudo-scientific quality assessment systems like "Risk of Bias" and GRADE. Every review concludes "more better quality research is needed", but Cochrane does very little to systematically or actively promote better research in the future, or punish people who have carried out poor research in the past. This makes their "products" at best unconstructive, and at worst misleading and dangerous. It's not badged as healthcare advice, so they get away with it.
     
  6. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    <deleted>
     
    Last edited: Mar 9, 2022
  7. Medfeb

    Medfeb Senior Member (Voting Rights)

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    @Adam pwme
    I've heard back from Cochrane on whether/when they will be providing an update on the evidence review. They do plan on doing that but the specific date is to be confirmed still.
     
  8. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    Thanks for getting back to me. I don't suppose they gave a reason?
     
  9. Andy

    Andy Committee Member

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    Last edited: Mar 10, 2022
  10. Art Vandelay

    Art Vandelay Senior Member (Voting Rights)

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  11. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    I will write to Cochrane again - copying in Hilda Bastian. Paul Glaziou, Hilda's PhD supervisor, and advisor on the Exercise review, I think has something to do with Handi. Will check that out. It's a clear conflict of interest even if Hilda says she has not spoken to Paul about the review.
     
  12. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    Yes, Glasziou is a founder/committee member of Handi https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6355298/
     
  13. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    See also the forum thread on the HANDI article that recommends GET for 'CFS' here.

    (Edited for clarity.)
     
    Last edited: Mar 10, 2022
    Peter Trewhitt, alktipping and Hutan like this.
  14. Lou B Lou

    Lou B Lou Senior Member (Voting Rights)

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    Every day that Exercise Review remains in the Cochrane Library it is harming ME sufferers.

    Now that NICE no longer recommend exercise the Cochrane Review is the prime source for anyone wanting for their own reasons (commercial, ideological, justifying more research funding for exercise studies on ME and LC, maintaining professional status etc) to promote exercise as treatment for ME.

    Now even journalists are referring to the Cochrane exercise review to justify their holding onto the false idea that ME sufferers need to exercise -
    “Exercise can help people do more.” from "How to move: exercising with chronic fatigue syndrome" Australian Guardian 9/3/2022.

    Four YEARS of procrastination. How does Cochrane, even in their wildest fantasies, think ME sufferers believe there are honest, sincere or justified reasons for the inexcusable delay in removing the review.

    .
     
    Last edited: Mar 10, 2022
  15. MEMarge

    MEMarge Senior Member (Voting Rights)

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  16. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    I sincerely hope not!
     
  17. Medfeb

    Medfeb Senior Member (Voting Rights)

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    Assuming you mean reason for not giving a date, no they did not. As I said above, I don't speak for Cochrane but I would hope it would be soon. I'll continue to follow up.
     
  18. MEMarge

    MEMarge Senior Member (Voting Rights)

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    I only asked because of this mention in the linked article:

    "In an exciting new development, the Royal College of General Practitioners (RCGP) is partnering with the RACGP to provide access to HANDI for UK GPs. This is a free resource so why not take a look?1 In addition, the RCGP will be contributing ideas for treatments to be included, helping with the review process, and linking RCGP resources to HANDI and creating UK-focused versions of HANDI advice."

    Post copied to The HANDI Working Group
     
    Last edited by a moderator: Mar 10, 2022
  19. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Like @Medfeb, I've also just had a reply:

    "...apologies for the lack of information on the exercise therapy for ME/CFS. We are planning to send an update about the status of the review and plans for the next steps, but the timing of the communication has yet to be confirmed. We will ensure it is shared with the ExerciseForMe-CFSUpdates subscribers."
     
    Michelle, Ariel, MEMarge and 7 others like this.
  20. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    Thanks.
     
    MEMarge likes this.

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