Graded exercise therapy compared to activity management for paediatric [CFS/ME]: pragmatic randomized controlled trial, 2024, Gaunt, Crawley et al.

Discussion in 'ME/CFS research' started by SNT Gatchaman, Mar 2, 2024.

  1. Hutan

    Hutan Moderator Staff Member

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    I was about to disagree, as surely a health system that is on its knees does not need to be wasting money on therapy that doesn't work, but here's the conclusion:
    Translation: we still couldn't make it work, but give us more research money, a lot more research money, and more clinical funding too, and we'll give it another go.

    Edit: I'd like to nominate that last Gaunt et al quote for an annual award - I'm not sure what the name of the award would be. Maybe 'Deepest denial'? Maybe we do need some annual awards.
     
    Last edited: Mar 3, 2024
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  2. Hutan

    Hutan Moderator Staff Member

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    Given the ridiculous conclusion, suggesting that the problem was just that the young people didn't get enough time with the therapists, I have to post this chart from Supplementary File 1

    Screen Shot 2024-03-03 at 10.05.14 pm.png
    I can't see any trend of young people with 8+ sessions of GET doing better than the young people who only had 0-2 sessions.
     
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  3. Amw66

    Amw66 Senior Member (Voting Rights)

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    " low intensity " . Is this number of sessions or the type of session ...
     
    Last edited by a moderator: Mar 3, 2024
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  4. Amw66

    Amw66 Senior Member (Voting Rights)

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    Exactly this .
    It's how it's always worked .
     
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  5. Hutan

    Hutan Moderator Staff Member

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    Yes, possibly the 'intensity' doesn't refer to the number or frequency of the sessions, but instead the 'toughness' of the sessions. Maybe they are suggesting that they should have been less lenient with symptom contingency, and encouraged the young people to push through more.
     
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  6. Amw66

    Amw66 Senior Member (Voting Rights)

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    It's GET - light .
    How many would have rolling PEM without knowing it
     
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  7. Hutan

    Hutan Moderator Staff Member

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    From the discussion re 'intensity':
    Sounds as if they are suggesting that the problem was the frequency, with sessions too spread out.
     
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  8. Amw66

    Amw66 Senior Member (Voting Rights)

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    If the number suggestion is correct then this is potentially a lot worse .
    Not had a good night here so not up to reading paper itself

    https://twitter.com/user/status/1764048985260454276


    And what happened to the 100+ participants who didn't fill in questionnaires at 12 months? Did anyone check to see if they were any worse?
     
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  9. Hutan

    Hutan Moderator Staff Member

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    For the ones that did fill in the questionnaires at 12 months:
    sounds like a process of adjustment to a chronic illness, with both less time doing vigorous physical activity and less fatigue.
     
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  10. Amw66

    Amw66 Senior Member (Voting Rights)

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  11. chillier

    chillier Senior Member (Voting Rights)

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    Screen Shot 2024-03-03 at 10.05.14 pm.png

    I just added a red line to this plot to make it easier to visualise (for me at least). If a dot is above the line they improved if it's below they got worse. If they stayed on the line there's no change. Just a quick approximate count of all the data points above and below the line:

    Activity management: 43 above, 44 below
    GET: 46 above, 44 below

    For both categories there are more red dots (people who did 0-2 sessions) above the line than below (so doing nothing looks like the best strategy). For the GET I count something like 13 blue (people who did 8+ sessions) dots below the line and 8 above - so around twice as likely to feel worse after GET at 6 months follow up than to feel better.
     
    Last edited: Mar 3, 2024
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  12. Amw66

    Amw66 Senior Member (Voting Rights)

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    Indeed.
    That's the logical explanation . Yet to see a " penny drop " moment from this team though .
     
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  13. chillier

    chillier Senior Member (Voting Rights)

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    The trend if anything looks to me like the fewer sessions you had the better your chances of improvement - for both activity management and GET.
     
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  14. Amw66

    Amw66 Senior Member (Voting Rights)

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    ???
    How on earth do you make sense of any " treatment"
    https://twitter.com/user/status/1764075579156889965


    ETA a bit concerning re CBT being needed / used for subjects developing anxiety and/ or depression during the trial .
    As we know many scales used for such diagnosis are inappropriate as symptoms are misinterpreted .
    The power asymmetry is never acknowledged . The stress these families are under is also poorly acknowledged.
    Many are in a classic double bind situation.

    I hope that they got appropriate help .
     
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  15. Sid

    Sid Senior Member (Voting Rights)

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    They're going to have a hard time spinning this as GET and activity management being "equally effective" since neither was effective and the scores didn't budge in either group.

    It looks like it took them 9 years since trial registration to conduct the trial and report it. My goodness. I wonder if the huge delays are due to the results being unfavourable to them.
     
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  16. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Here are the descriptions of the therapies from the supplementary material provided with the 2019 protocol paper: https://bmjopen.bmj.com/content/6/7/e011255

    And as Trish said 5 years ago...
     
    Last edited: Mar 3, 2024
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  17. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Yes, GET by another name:

    Although this focuses on cognitive activity rather than physical exercise, by introducing fixed increments does it run foul of the NICE prohibition of GET.
     
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  18. Sean

    Sean Moderator Staff Member

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    Welcome to the new regime. Same as the old regime.
     
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  19. Evergreen

    Evergreen Senior Member (Voting Rights)

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    So the protocol described AM as essentially graded cognitive therapy, but in this paper they describe AM as a more general graded activity therapy, including both cognitive and physical activity:
     
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  20. Evergreen

    Evergreen Senior Member (Voting Rights)

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    And in the protocol paper itself AM is described differently to in the documents @Lucibee quoted:
     
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