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  1. Hilda Bastian

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    We will have that expertise and (b) ... ....That material I talk about above is full of references and links to the discussion you mean. There will be multiple opportunities along the way for people to let us know, in a variety of ways, what we have failed to consider.
  2. Hilda Bastian

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    No, that's not what I meant: I meant making my position public. Social media is a big part of my day and integral to a major part of my work, so it is my real world. Emails are also a big part of my day, and integral to my work, and I explicitly included that. If you're a communication...
  3. Hilda Bastian

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Yes, we will have independent methodological experts (both for trials and systematic reviews) as members of the IAG, and we'll consult other independent experts of various types (eg statistics) in several ways. Same goes for people with content expertise.
  4. Hilda Bastian

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Thanks, again! Point 1: no, it was a different statement by Jonathan that I discussed, and then a version of it from someone else who dropped the "primary" endpoint part. I think I've understood what the points were that people were making - although for some of them it took a while (like...
  5. Hilda Bastian

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Thanks - and no worries: the misunderstandings will work themselves out. It's an inevitable process when someone from a different perspective arrives. The misunderstandings should be sifted from the genuine disagreements before anything is finalized - but also trying to ensure that this doesn't...
  6. Hilda Bastian

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Thanks! I'm really sorry to everyone who picks this up at a later point, but while I'll continue to read this thread for the long haul, I genuinely don't think I can make my point of view on the very narrow issues I was discussing any clearer than I already have. There's going to be plenty of...
  7. Hilda Bastian

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    If the claim that started this discussion was always framed as you phrased it here, then it wouldn't have been a good example of what I mean, so the discussion wouldn't have taken place. But that's not the statement I've been taking issue with. Nor is the statement I mentioned an unusual...
  8. Hilda Bastian

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Oh yes, it was totally my choice to enter the discussion about ME/CFS and the Cochrane review, and there was no pressure or incentive to agree to lead the IAG. It was sticking my neck out because it would make me a target for prolific aggressive behavior, both directed at me (for not agreeing...
  9. Hilda Bastian

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    That's a very different discussion. I was talking about scientific weakness of an argument. It really doesn't bother me personally when you label me an idiot who doesn't understand the scientific method.
  10. Hilda Bastian

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Disagree. Trialists giving undue weight to secondary endpoints is a problem, but that's not by definition because of multiplicity. Whereas you can have multiplicity problems with primary endpoints across trials with multiple treatment arms, etc.
  11. Hilda Bastian

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Disagree. Trawling would be something like subgroup analyses that had never been part of the protocol in the first place, not reporting data on a (reasonable) pre-specified analysis. A trial might only be powered for its primary endpoints, but not its secondary ones - for example, mortality...
  12. Hilda Bastian

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Even if the uncertainty around one or more outcomes, including the primary outcome, is so great that it can't be relied on, it does not necessarily follow that no other outcome in the trial has a lower risk of bias (for example, an objective adverse effect of surgery). I've referred a few times...
  13. Hilda Bastian

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I'm not talking about retrospective cherry-picking: I'm talking about methodically checking every aspect of each study, according to predetermined criteria to try to minimize bias. That's the opposite of cherry-picking. It requires that the criteria are not chosen in order to ensure the review...
  14. Hilda Bastian

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    There seems to be a strong degree of concern from many on this forum for more people to understand and support the concerns of people with ME/CFS. I'm seeing people often asking why don't more people listen, care, take action? So everyone doesn't think it doesn't matter if people who listen are...
  15. Hilda Bastian

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I chose urinary incontinence, and then just did a fairly cursory search for an example of a trial. The reason was because I asked myself, what were the health areas where the people affected by the condition profoundly challenged and changed the assumptions I had about outcome measurement? The...
  16. Hilda Bastian

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Yes. Although a trial's objective is supposed to be answering what it's testing, and if the intervention fails to achieve what's hoped for, the trial succeeds if it shows that. Doing excellent research is hard, and most of it (of all types) is far from excellent. Can't afford to be less than...
  17. Hilda Bastian

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    It wasn't an update. It's still the same version of the review - see this at the top: You can't make changes without the date being automatically recorded. For the explanation of what changes have occurred, it's supposed to be in the "see what's new link", which is here for that review:
  18. Hilda Bastian

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Yep, but how is information about 2 procedures reliable, if it says their outcomes are equal, when patients say one hurts more than the other? Yes, it's less reliable when you can't blind for the difference between the procedures, but it's a question of degree of reliability, not "reliably...
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