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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 97 of 124
  1. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Yep. They need a protocol before looking at the evidence, or any assessment is biased.
     
    adambeyoncelowe, Sep 2, 2022
    #1921
    inox, bobbler, alktipping and 5 others like this.
  2. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    But the protocol wasn't written 20 years ago. Anyone familiar with the clinical trials can therefore easily cook up a biased protocol.
     
    Snow Leopard, Sep 2, 2022
    #1922
    Sid, alktipping, bobbler and 5 others like this.
  3. Trish

    Trish Moderator Staff Member

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    I decided to get the timeline straight for this process, so rather than reading back through this thread, I have gathered all the News in Brief items I could find:

    2020

    Week beginning 10th February 2020

    Cochrane review 'Exercise therapy for chronic fatigue syndrome'

    The published note from the editorial team at Cochrane Editorial and Methods Department, 'A statement from the Editor in Chief about this review and its planned update' has been linked from the latest version of the review.
    Link here

    Hilda Bastian has been appointed to lead an Independent Advisory Group for the full update of the review. 'This group will involve partners from patient-advocacy groups from different parts of the world who will help us to embed a patient-focused, contemporary perspective on the review question, methods and findings.'
    Announcement here Thread here

    Week beginning 11th May 2020

    Cochrane. Hilda Bastian, head of the independent advisory group, has started making a list of accessible published commentaries and critiques of the Cochrane review on exercise therapy for CFS.
    Tweet here Thread here

    Week beginning 11th May 2020

    Cochrane Independent Advisory Group Hilda Bastian, head of the independent advisory group, has created an open sheet for additional links related to the Cochrane review on exercise for CFS. This list contains documents that are relevant to the review but didn’t fit the scope of the first list which focuses on commentaries and critiques.
    Open sheet here Thread here

    Week beginning 1st June 2020

    Absolutely Maybe "Let's Be Serious About Bias in Protocols of Systematic Reviews"
    Article by Hilda Bastian who is leading the Independent Advisory Group that will examine the Cochrane review on exercise and ME/CFS. "A fundamental problem with the original exercise therapy and ME/CFS protocol, it seems to me, was evident author bias in the text about both the intervention and the condition."
    Article here Thread here
    Hilda Bastian has joined the Science for ME forum as a guest member, resulting in a lively and worthwhile discussion.
    Thread here
    __________________

    2021

    Week beginning 31st May 2021

    Cochrane
    Hilda Bastian, lead of the independent advisory group (IAG) on updating the Cochrane review on exercise therapy for ME/CFS has published a progress report. New members of the IAG and author team have been announced. These include well-known advocates such as Mary Dimmock, Penelope McMillan, and Jaime Seltzer. S4ME forum members, however, have raised several concerns about the new announcements.
    Announcement here Thread here

    Week beginning 28th June 2021

    Cochrane
    Hilda Bastian, Lead of the Independent Advisory Group (IAG) of the Cochrane review on exercise therapy for ME/CFS, has published a new monthly update. A ninth member of the IAG has been announced: Miranda Cumpston, senior methods editor for Cochrane Public Health. The IAG will be deciding on a tenth member in the coming weeks. Meanwhile, the author team is working on a first draft of the protocol for the review.
    Article here Thread here

    Week beginning 2nd August 2021

    Cochrane
    Hilda Bastian, lead of the Independent Advisory Group (IAG) for the Cochrane review on exercise therapy for CFS, published a new update. Bastian and Cochrane’s editor-in-chief, Karla Soares-Weiser, decided to expand the IAG with an extra 11th position for a person who has recovered from ME/CFS.
    Article here Thread here
    __________________________

    So basically

    2.5 years ago Hilda was appointed to lead the IAG, and started collecting information,

    then there was a gap of over a year before the IAG and review writing groups were appointed and the review group started working on a draft protocol.

    then a gap of another year and still nothing...
     
    Trish, Sep 2, 2022
    #1923
    MSEsperanza, Kirsten, sea and 36 others like this.
  4. chrisb

    chrisb Senior Member (Voting Rights)

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    Who has Hilda upset?
     
    chrisb, Sep 2, 2022
    #1924
    Sean, Simbindi, Amw66 and 2 others like this.
  5. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    This is very helpful. Thank you!!
     
    Caroline Struthers, Sep 2, 2022
    #1925
    MSEsperanza, dave30th, Hutan and 8 others like this.
  6. Trish

    Trish Moderator Staff Member

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    Some of the links no longer seem to work.
     
    Trish, Sep 2, 2022
    #1926
    Lilas, Binkie4, alktipping and 4 others like this.
  7. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    A very useful post, thank you @Trish . We need this pinned to the top of each page along with the Mikado one.
     
    Peter Trewhitt, Sep 2, 2022
    #1927
    MSEsperanza, Binkie4, alktipping and 6 others like this.
  8. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Absolutely. But the other side can say as much to any good protocol too. The best you can do is come up with a protocol before you officially look at any evidence, and get pinky swears from all involved that they promise to be open-minded.
     
    adambeyoncelowe, Sep 2, 2022
    #1928
    MSEsperanza, Midnattsol, FMMM1 and 10 others like this.
  9. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    Very important point @Caroline Struthers , especially if any stakeholders have ME/CFS because we all know that everything takes that much more effort to read, consider, reply.

    ‘A very short consultation period’ = Another example of ableism?
     
    It's M.E. Linda, Sep 3, 2022
    #1929
    Binkie4, MSEsperanza, Kirsten and 17 others like this.
  10. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    "But why "a very short consultation period"?"
    Well uhm if you've a very weak case --- and you've already decided to go with the option that isn't supported by the evidence --- better not to have any consultation, but if you must ---- a very short consultation and perhaps a very brief ("high level") summary of the issues raised and a vague response to the consultation [hope I'm not giving them any ideas --- but the are bright, albeit in all the wrong ways]---

    I wouldn't fancy dealing with a response from you and indeed others on this forum --- I might read it out to illustrate how stupid we were to "consult" and to ask the idiots who proposed consultation how to address the more problematic/insightful responses to the consultation ---- but if you don't care and your fairly bright/experience then you can come up with some obfuscation.

    Excuse the negativity/cynicism -- lets hope I'm wrong.
     
    FMMM1, Sep 3, 2022
    #1930
    Kirsten, sea, Hutan and 14 others like this.
  11. rvallee

    rvallee Senior Member (Voting Rights)

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    It's warranted. Much of this disaster has been down to secrecy hiding malfeasance. Having nothing more than secrecy yet again does not deserve the benefit of the doubt. People prove their intent by their actions, and so far every action taken by Cochrane is indistinguishable from malfeasance.

    It says a lot that Cochrane has such a good reputation in medicine. If this is some of the best out there, oh boy there really isn't a lot of good. It really is all a brute force approach, luck times a whole lot of people with a lot of resources, and that only works on easy problems and those are gone.
     
    rvallee, Sep 4, 2022
    #1931
    sea, Chezboo, Mithriel and 7 others like this.
  12. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    Yes it's weird i.e. given that these folks (Doctors specifically) should really be very good at looking at research methodology and deciding --- crap - move on. Based on recollection (accurate?) of comments made by Jonathan, I think there may be two things going on - one, Doctors aren't trained, to review publications analytically, to the same degree as folks like Jonathan were in the past; two, most Doctors rely on "easy meals" i.e. they don't analyse the primary (base) studies themselves - the just accept Cochrane review. An additional issue seems to be that Cochrane says dole out exercise, CBT --- and GPs, in particular, are happy to have something to offer patients the cannot actually treat!

    Armed with the above, we can of course highlight that there are no treatments and that we need primary research to understand ME/CFS and move towards effective treatments --- research like GWAS --- funded via public money --- "Government" funded.
     
    FMMM1, Sep 4, 2022
    #1932
    Simbindi, Solstice, Peter Trewhitt and 4 others like this.
  13. Adrian

    Adrian Administrator Staff Member

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    When writing a protocol shouldn't you be explicit about how it may go wrong and the biases being conisdered and mittigations that you put in place in the protocol. Then a reader can know what issues are considered and whether the protocol is robust or if not bring up the additional threats. They can also consider whether any mitigations (blinding etc) are robust enough.

    If a protocol doesn't do this exercise then the choices can be random, unjustified, potentially wrong and also not communicated.
     
    Adrian, Sep 5, 2022
    #1933
    MSEsperanza, MEMarge, alktipping and 6 others like this.
  14. rvallee

    rvallee Senior Member (Voting Rights)

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    I'd say that's the point. Without the lower standards of EBM, and how they keep falling with time, the entire psychosocial approach has no evidence. And they have to keep falling further as they deploy it more. To the point where most of the few service evaluations for the real-life clinics are usually done by the prominent ideologues pushing the model. They must do their own evaluation of their own homework, in a process that allows their random, unjustified, potentially wrong ideas to pass "scrutiny". Homework that they wrote themselves, of course. Then like with Cochrane reviews, they literally review their own grading of their own homework.

    The flaw is people wanting something, anything, seem to "work" more than they care about the outcome on patients. They are driven to prove themselves right, and discouraged from poking holes in their work, the actual process of science. Until medicine gets serious about this, that wanting something to be true does not make it so, more or less the basis behind psychosomatics, this process has to stay to keep the traditional beliefs.

    I saw a thread today by a German neurologist, describing how psychosomatics has changed, and yet everything I read going back a full century is obviously the exact same ideas explained the exact same way with the exact same reasons, only the labels and rhetoric change. Without the lowest standards of EBM, all of this traditional folk medicine, let's call it for what it is, psychosomatics is essentially the Western equivalent of TCM, gets debunked.

    Oddly enough that neurologist was criticizing the recent German study asserting their preferred psychosomatic explanation, but his arguments are also the exact same, it's all a question of belief and the degree to which they're applied. They're still the same ideas devoid of any evidence.
     
    rvallee, Sep 5, 2022
    #1934
    TruthSeeker, bobbler, Lidia Thompson and 10 others like this.
  15. Trish

    Trish Moderator Staff Member

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    I have just produced a summary based on the News in Brief posts about this process, with a few added points on more recent lack of progress.

    Cochrane review of exercise therapy for CFS - a brief history from 2019 to 2022

    I have made it a closed thread so new updates can be added without interruption by discussion, and discussion is not split across 2 threads.

    Use this thread for any further news or discussion.
     
    Trish, Sep 18, 2022
    #1935
    MSEsperanza, Michelle, Kirsten and 27 others like this.
  16. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    Fantastically useful - many thanks again Trish
     
    Caroline Struthers, Sep 19, 2022
    #1936
    MSEsperanza, Lou B Lou, FMMM1 and 13 others like this.
  17. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    ME/CFS Skeptic, Sep 23, 2022
    #1937
    lycaena, Amw66, MSEsperanza and 28 others like this.
  18. Medfeb

    Medfeb Senior Member (Voting Rights)

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    I was asked if I could share any information on the progress of the Cochrane systematic review for exercise in ME/CFS.

    I don't speak for Cochrane and I don't have a specific details or a date to share. But I am anticipating the draft protocol will be released shortly for review by the IAG and the public. I also understand that that review will be coordinated centrally by Cochrane and the IAG.
     
    Medfeb, Oct 2, 2022
    #1938
    lycaena, Joh, Amw66 and 24 others like this.
  19. Hutan

    Hutan Moderator Staff Member

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    Thanks for your efforts @Medfeb
     
    Hutan, Oct 3, 2022
    #1939
    dave30th, MSEsperanza, Solstice and 15 others like this.
  20. Trish

    Trish Moderator Staff Member

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    Thank you @Medfeb. I really appreciate this update.

    To remind us all of the timeline on this:
    March 2020 - Cochrane was actively getting the author team together and said it anticipated the review would be completed in about 2 years from early 2020. That implies an expected completion date early 2022.

    May 2021 new members of the IAG and review author team were announced.

    June 2021 The author team is working on a first draft of the protocol for the review

    No official updates since then.

    So now in
    October 2022 we are told unofficiallly that the draft protocol is nearly ready to be shared with the IAG. Presumaby that will lead to some revision before the public consultation.
    I am speculating that this means the protocol won't be finalised until 2023.

    And then the review itself will start. If the NICE review process is anything to go by, this could be a very length task, unless the review team have the good sense and permission from Cochrane to simply adopt the NICE detailed analysis of all the studies NICE included so they only have any studies NICE didn't include to analyse in detail.

    Given the time it's taken just to get to a draft review, this looks like it could take years...

    Edit to add. I don't blame the individuals on the review group. They are all busy professional people with other priorities too, and it can't be easy working at a distance rather than being able to get around a table and hammer things out.
    This makes it all the more urgent that the current review be withdrawn immediately. If Cochrane is concerned that this leaves people with no review of exercise for ME/CFS, they can refer people to the NICE and CDC reviews and conclusions as useful alternatives.
     
    Trish, Oct 3, 2022
    #1940
    Medfeb, lycaena, alktipping and 24 others like this.
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