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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. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    So let's demand to also include people who had thought they have recovered but did relapse.

    Sorry for being cynical - but that's what I was trying to point to: the spectrum of people who have recovered or thought they have recovered and the diversity of reasons (including religious/spiritual ones) to which they ascribe their full, partly or temporary recovery.

    I personally know someone who recovered two years after illness onset and see themselves as just lucky – later their child got ill and is now severely affected. Its parent is still well.

    It’s impossible to find persons who represent the whole spectrum of people who have recovered (or think they have recovered) from ME/CFS, and as you and others have pointed out, the assumption they qualified for advisory or advocacy only because they recovered doesn’t make sense.
     
    Last edited: Aug 6, 2021
  2. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    Yes, they are
     
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  3. rvallee

    rvallee Senior Member (Voting Rights)

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    Taking a representative case, as no one can seriously ascribe a reason for their recovery without falling into the "correlation is not causation" trap (although of course this is basically the bread-and-butter of BPS and EBM in general, so correlations are simply cherry-picked the one way they want it to be), how actually useful is that perspective? I see this all the time in LC forums, on twitter and elsewhere. Some people attribute their recovery to a bunch of random things. For a long time there were many drugs and supplements stacks. Do those count? Ivermectin? B12 injection? Freebased hydroxychloroquine? Rainbow therapy? Most testimonies are basically just this:



    A simple "I don't know" and happy to return to their old life, which it really must be pointed out and emphasized is something the BPS ideologues explicitly argue is not the case, even though we literally tell them that all the time and in explicit terms. They explicitly argue we must not want our old healthy lives back, even though we literally tell them this is all we want!

    I really can't see the usefulness other than complying with an imposition by the editor-in-chief that was lobbied by unknown actors, which takes all the independence out of the process. How much more impositions are there? How many are there that we don't know about?

    Cochrane couldn't display more contempt for the process, and for us, if they tried. This is supposed to be a new model and it's actually worse because it won't have the credibility of a working group. The process started 5 years ago. 5 years!
     
  4. Trish

    Trish Moderator Staff Member

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    A passing thought. If someone can be found who recovered without any intervention, or recovered following careful pacing/resting and being very careful to stay within their current activity capacity, they would be able to make an n = 1 argument that GET is not necessary for recovery.

    Perhaps I should put myself forward. I had over 6 months of what would now be diagnosed as ME following what was probably EBV infection many years ago. I was largely bed bound all that time, had no treatment other than pain meds for severe headaches, and recovered completely. GET hadn't been invented back then in the 1970's, and there was no suggestion of any therapy or rehab. (A separate and ongoing episode of ME started 12 years later.)
     
  5. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Yep, that's where I'm at with this.

    Rather than just plain old misunderstanding and confusion this has gone beyond the absurd.

    Surely this has to have been deliberately set up so that they can conclude what they want to conclude, claim they've covered as many different viewpoints as possible and that no group was happy. As no one was happy the conclusion of the IAG must therefore be independent and correct, divisive though it maybe.

    This is a fine example of what happens when politics takes control of science.
     
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  7. Ariel

    Ariel Senior Member (Voting Rights)

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    What is meant by "complex interventions"?

    I mean, I think I know what it means, but what is understood by this phrase by people looking at it?
     
  8. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    It means they have no idea if what they are doing will actually work. ;)
     
  9. spinoza577

    spinoza577 Senior Member (Voting Rights)

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    Of course, there wouldn´t be a knowing the cure. But they could be clever enough to know a hypothesis.

    And this could be interesting because such a hypothesis might include a mechanism for exertional intolerance.

    The point is that researcher at start here in all this GET stuff in fact don´t ask the right questions. I know though, imagination and fantasy - although necessary for good ideas in science - are not part of the scientific technique, and you can make up any technically proper paper with containing complete rubbish.

    In so far, there even might be no difference between GET scientists and at least most of n=1 people (only that the first ones may have the better methods at hand).


    I am going to repeat myself: without power of judgement only nonsense is produced.

    This is in fact a clever point, as it seems to referre to a basic act of knowledge like "This is red" (which can be true or false). Such a basic act is not part of the scientific method but is a prerequisite for science.

    But the seemingly basic act: "This patient has recovered" is in fact not simply visible, and therefore a matter to investigate as well. And here it shows up, that it is not properly done, and the whole thing can be a lie about people.

    I remember slightly "Why are the criteria for recovery so lax? Because otherwise we had no meaningful recoveries." (Micheal Sharp to students, I believe).

    This then is what it can come down to:
     
  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    The quote is not quite accurate.
    It was SW in a debate.
    (can't post a link as I it was on PR).
     
  11. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    Is think this is it (in bold in the second tweet) isn't it?


    “They changed the recovery measure because they realised they had gone too extreme and they would have the problem that nobody would recover.”
     
  12. kacheston

    kacheston Established Member

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    Hello,

    Following the news from Cochrane that they are seeking someone who has 'recovered' from ME to join the IAG, I'm wondering whether to put myself forward. I have mixed feelings about this role and would only apply if the wider community thought I might be a suitable person, so I'd really appreciate hearing any thoughts you might have on this member's only thread here https://www.s4me.info/threads/shall-i-apply-to-join-the-cochrane-iag.21845/ (Thank you so much, @Trish , for setting this up!)

    Katharine
     
  13. spinoza577

    spinoza577 Senior Member (Voting Rights)

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    Yes, thank you, this I meant.
     
  14. Ariel

    Ariel Senior Member (Voting Rights)

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    [Laughter from audience]

    :sick:
     
  15. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    It shows you they take claims by researchers on faith, rather than actually looking at whether the methodology is meaningful.
     
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  16. dave30th

    dave30th Senior Member (Voting Rights)

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    He once told me he felt about 70% recovered, although that was years ago.
     
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  17. spinoza577

    spinoza577 Senior Member (Voting Rights)

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    They surely laughed because this shows that the "serious" result is completely meaningless?
     
    Last edited: Aug 14, 2021
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  18. MatthiasRiem

    MatthiasRiem Established Member

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    I thought it might be useful to put a short reminder here that suggestions for the 11th ('recovered patient') position on the Independent Advisory Group need to be submitted by Sunday.
     
  19. rvallee

    rvallee Senior Member (Voting Rights)

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    Just going to leave here for no reason whatsoever a typical remission (emphasis, not quite recovery) story, by far the most common one I see (out of hundreds and counting), wondering how much that really helps, if it's really relevant to take spurious correlations one way, a signal of sorts, while ignoring all those bits of noisy static that should remind anyone exactly how people latch on to various correlations for ineffective treatments, whether it's a good luck charm, mustard ointments or singing to any of a number of dead gods.

    I have read a few stories of people reporting that exercise was crucial to their recovery, though it's the least common I see. I have seen many attributing it to various other reasons, from Ivermectin to Niacin and coenzyme this or even acupuncture (and of course in some cases, vaccination), though there are so many none stand out. This is, however, the most typical story, the same kind we find with recovery from any acute infection, from which all sorts of bad correlations could be cherry-picked if one really wanted to, which is the essence of the BPS model and its various false attribution errors. This is the process from which folk remedies became fashionable, whether actually effective or not.

    And I really hope this here is an opportunity to move away from the bizarre clinical model of "actually, correlation is just as good as causation if we do a bunch of interpretative mathemagics on it and make sure only like-minded people are involved in the interpretive dance". I'm not pointing at the rest or fasting here, but on the "I don't know".

     
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  20. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    Just had this from Cochrane - so the monthly report seems to have gone by the wayside...

    upload_2021-9-6_20-33-43.png
     
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