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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. Blueskytoo

    Blueskytoo Senior Member (Voting Rights)

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    How completely, predictably, and despairingly unsurprising….
     
    inox, Ravn, alktipping and 8 others like this.
  2. rvallee

    rvallee Senior Member (Voting Rights)

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    Canada
    I'd say that the recent events with NICE has given me zero confidence the same won't happen again here. Cochrane already did a similar thing, it's basically expected they would do it again, although that's probably entirely tied together with how NICE turns out. NICE is a government institution with a legal charter, Cochrane has no such thing and neither organization have followed their own rules with us. NICE can do just cancel its rules and process, which Cochrane has zero obligation or incentive to respect and have not done once yet.

    It's sad but honestly I expect the same here. If NICE can do this and Cochrane already did, the odds that it won't end up the same are basically nil. We are just hated that much, at this point I'm not even sure lepers were hated as much at their worse, it's absurd to see the depth of contempt. You'd think we killed every last one of their puppies, or something.

    We need an entirely new model of health care and Cochrane is basically the gold standard of medical status quo, and the status quo is working against us. I'm seeing absolutely no learning happening anywhere related to Long Covid, it's the same junk all over again.
     
    Jan, JoanneS, Lidia Thompson and 21 others like this.
  3. Art Vandelay

    Art Vandelay Senior Member (Voting Rights)

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    Location:
    Adelaide, Australia
    Contrast Cochrane's behaviour when it comes to the ME/CFS Exercise Review with this issue:

    This article shows that Cochrane can do the right thing if they're willing (as is also the case with the journalist who wrote the article, Ben Goldacre).

    Quite frankly, something stinks here.

    Cochrane's evasions, duplicity and determination not to do the right thing by people with ME/CFS is nothing short of disgraceful.
     
    Jan, Sean, Michelle and 25 others like this.
  4. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    Location:
    Oxford UK
    Or should I say, there has been a "pause" in activity whilst we wait, in limbo, for notification of the next report?
     
    Jan, Michelle, FMMM1 and 23 others like this.
  5. strategist

    strategist Senior Member (Voting Rights)

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    3,890
    My guess is that Cochrane has decided to find excuses to delay until they know the outcome of the NICE guidelines, then align themselves with them.

    PS: and I think the reasoning used is that they want to avoid a situation where they contradict an authority like NICE because that would lead to more bad PR and conflict.
     
    Last edited: Sep 7, 2021
    Jan, Sean, Michelle and 16 others like this.
  6. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    444
    Location:
    Oxford UK
    I hope aligning themselves with NICE means finally withdrawing the current review which still says there is moderate quality evidence that exercise is helpful for CFS.
     
    MSEsperanza, Jan, Sean and 19 others like this.
  7. chrisb

    chrisb Senior Member (Voting Rights)

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    4,061
    Don't count your chickens...
     
    Sean, Ravn, Missense and 5 others like this.
  8. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    444
    Location:
    Oxford UK
    Too late. There are 37 :)
     
    FMMM1, Arnie Pye, Ravn and 12 others like this.
  9. Adrian

    Adrian Administrator Staff Member

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    I wonder if Hilda has got board of the effort so nothing has happened until she gets interested again.
     
    FMMM1, Ravn, Missense and 4 others like this.
  10. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    10,227
    wouldn't it be so lovely if we could just take up a hobby -like exercise - when life with ME gets either too boring, or too difficult, or both at the same time?
     
    Jan, Starlight, rainy and 10 others like this.
  11. Blueskytoo

    Blueskytoo Senior Member (Voting Rights)

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    This just seems to be an exercise in frustration for us, frankly. We aren’t kept in touch with what’s happening, there’s no transparency about who gets to make the decisions about this and why they were chosen. Unfortunately, it looks more and more like this review is going to be the whitewash we all suspected it would turn out to be and once more, powerful vested interests will win over the well-being of the people whose lives are being devastated as a result of this ludicrous failure of people who owe us better.
     
    Sean, JoanneS, rainy and 10 others like this.
  12. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    1,285
    I don't keep up with this stuff so I may be inaccurate here.

    The whole thing seems bonkers* we can see NICE aligning themselves with Cochrane but the NICE review has just shown all of the ME/CFS studies were "low or very low quality" and Cochrane presumably marked these as "medium" - how is anyone expected to have confidence in this system? We know all of the previous [Cochrane] reviews re ME/CFS were crap but lets trust them to do it all again.

    *https://www.s4me.info/threads/nice-...-guideline-recommendations.22209/#post-370570
     
    Murphy, Blueskytoo, EzzieD and 8 others like this.
  13. Hutan

    Hutan Moderator Staff Member

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  14. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Location:
    Norway
    Just saw this on Twitter. Heartbreaking personal news from Hilda Bastian who has lost her son. I fully understand why everything else has been on hold.

     
    Woolie, Jan, alktipping and 26 others like this.
  15. Hutan

    Hutan Moderator Staff Member

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    16,582
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    Last edited: Sep 16, 2021

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