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Cochrane Review: 'Exercise therapy for chronic fatigue syndrome' 2017, Larun et al. - Recent developments, 2018-19

Discussion in 'General ME/CFS News' started by Trish, Jun 18, 2019.

  1. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    That may be so but I suspect very few actually look at Cochrane reviews. The great majority will look at government guidelines. If Wikipedia is misleading then if NICE changes its mind it can be documented there.
     
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  2. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    NICE won't change their mind until the article is retracted. I'd bet a reasonable amount of money on it.

    Those in charge of government policy want to be seen as doing something. They expect to receive more criticism if they recommend nothing, compared to doing something ineffective. Their fallback literally is that there are no other treatments other than what Cochrane reviews recommend therefore that is what they are going to do. Government policies are based on public perception (face), not quality of the model or evidence.
     
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  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Actually I think we can be pretty sure that NICE are making their own analysis. (They said they would and I have reasons to think they are sticking to that.) Cochrane reviews are a source for NICE but NICE does not use the Cochrane GRADE assessment per se. The people on the NICE committee are 100% aware that there are problems with the review.

    Whether or not NICE change their mind is dependent on completely different issues as far as I can see. Policy is not dependent on public perception. It is dependent on various viewpoints on the committee. Those viewpoints we can expect to be varied. Some may involve personal competing interests. There isn't a 'government' wanting to do something in all this. Like most situations it is just who happens to be there at the time. I cannot think of anyone on the committee who wants to put a 'government' face on things. Their agendas are other things.

    (The people who set the committee up might have a more institutional viewpoint, but they are not the committee.)
     
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  4. Kalliope

    Kalliope Senior Member (Voting Rights)

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    FOI request granted. They were just emails from someone complaining to the Norwegian Institute of Public Health for having been denied access to documents with case numbers 2017/10566 Documents nr. : 12 and 13.

    These documents have later been released and are included in @Michiel Tack 's blog post "The Cochrane correspondence"
    https://mecfsskeptic.wordpress.com/2019/07/03/the-cochrane-correspondence/
     
  5. rvallee

    rvallee Senior Member (Voting Rights)

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    Most will never hear about it and dismiss it without reading any of it whenever someone would link to them.

    It's the asymmetry of bullshit, it takes disproportionate effort to counter disinformation than it takes to make it in the first place. And there is far too much sunk cost to the whole thing to go back without jeopardizing the second golden age of magical psychology.

    In hindsight it will be damning as hell and serve as indisputable evidence for lawsuits, but disbelief will have to be suspended first.

    Of course until then it's still fully worth putting pressure on the organization and making them respond and acknowledge whatever happens next, although most likely is about the same as the SMILE paper, modified heavily but with the same recommendations.
     
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    The Cochrane Handbook for Systematic Reviews of Interventions was updated in July 2019
    https://training.cochrane.org/handbook
     
  7. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Trial By Error by David Tuller: What's up With Cochrane's Exercise Review?

    On June 17th, Cochrane announced that it had received a revision of a much-contested review of exercise therapy for treatment of chronic fatigue syndrome (as the organization has long called the illness or cluster of illnesses also referred to as myalgic encephalomyelitis, CFS/ME, and ME/CFS). In a posted statement, Cochrane noted that “the process has taken longer than hoped; the amended review is being finalised and it will be published during the next 2 months.”

    Well, it seems like the process continues to take “longer than hoped,” since it is now more than three months since that notice was posted.
     
  8. Skycloud

    Skycloud Senior Member (Voting Rights)

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    Just retract the thing already!
     
  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  10. Esther12

    Esther12 Senior Member (Voting Rights)

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    Surely there's no way they'd put the interests of patients over those of their mates!
     
  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    unfortunate that if anyone does a google search on 'cochrane review exercise for chronic fatigue syndrome', although the Vink paper comes up it only shows the first para of the introduction.
    so unless someone then reads the article it gives the impression that the review was sound. Something to bear in mind if anyone does a similar article.
     
  12. Barry

    Barry Senior Member (Voting Rights)

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    @Mark Vink
     
  13. EzzieD

    EzzieD Senior Member (Voting Rights)

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    Yikes! That's very unfortunate and indeed something to bear in mind for future such articles! Maybe 'erroneously concluded' or 'concluded on non-robust evidence', something along those lines, so that casual readers only looking at the first para don't get the completely unintended impression that the research reached sound conclusions.
     
  14. WillowJ

    WillowJ Senior Member (Voting Rights)

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    I have been hearing from people I see (even physical therapists and occupational therapists) that they're aware that GET is useless because the big trial had overlapping entry and outcomes criteria (And other, difficulties, but this is the one most recently remarked upon to me). They're also aware that Mayo Clinic is still saying incorrect things, but that Kaiser and CDC have changed course.

    So I think it matters less what Cochrane and Mayo do than it previously did, as one way or the other the word is getting out. I imagine Miriam Tucker, @dave30th , Lucinda Bateman, @Tom Kindlon , Workwell, @Webdog, @Mark Vink, and everyone else who has been working hard to educate people and analyze the papers have been making a difference.
     
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  15. Trish

    Trish Moderator Staff Member

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    That's good to hear, @WillowJ, every small victory is important, but there is still a very long way to go to get all health professionals on board. I think what NICE, Cochrane, Mayo etc do is still vitally important to most of us.

    There are still, in the UK and some other countries, funded trials of GET/CBT variations and awful papers being published, and patients being referred to clinics for inappropriate 'therapy'. None of the papers have been retracted, text books and medical courses don't acknowledge the problem etc etc.
     
  16. MEMarge

    MEMarge Senior Member (Voting Rights)

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  17. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    In order to be able to read the correspondence, I needed to put the e-mail snipptes included in the documents in chronological order into one single document.

    In case anyone else finds this helpful, I leave here my excerpt of the entire correspondence from May 2019 (as requested and documented by @Marit @memhj ) in a single document.

    Edited to add:

    Didn't excerpt the main part of the first e-mail from 13.05.2019 about the changes in the revised review. Now added in a separate document.

    Apologies for any confusion.
     

    Attached Files:

    Last edited: Oct 3, 2019
  18. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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  19. WillowJ

    WillowJ Senior Member (Voting Rights)

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    Yes, certainly there's more work to do.

    I just am pleased to note that we've made a tangible beginning. And we're getting more people to help.

    Harvard and other places are onboard. That should help with the textbooks, eventually.

    The current situation is unlikely to last forever, and stuff is in progress to change it. There's a light at the end of the tunnel.
     
    Amw66, MEMarge and Sunshine3 like this.

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