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A general thread on the PACE trial!

Discussion in 'PsychoSocial ME/CFS Research' started by Esther12, Nov 7, 2017.

  1. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  3. Art Vandelay

    Art Vandelay Senior Member (Voting Rights)

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    One part of this article really jumped out at me due to its parallels with the PACE trial controversy. I have always been baffled by the complete lack of interest in the PACE scandal by the media, academia and the general public.

    Apparently most journalists (the article refers to them as being 'scientifically illiterate'), journal publishers and the medical establishment did nothing to investigate and call out Wakefield's fraud either.

     
    Last edited: Sep 6, 2020
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  4. Skycloud

    Skycloud Senior Member (Voting Rights)

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    This so much.

    I've been reflecting a lot on this recently in relation to ME. The structural spinal issues (and this is not a thread for discussing those) just highlight for me yet again where accountability lies for the hole ME patients are in. I don't blame the mainstream press particularly; they just reflect what the medical establishment and journals have done through their negligence and collusion, and are still doing by failing to do their job. It's been a real eyeopener for me and a source of much disillusionment.

    edit removed one word to make sense
     
    Last edited: Sep 7, 2020
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  5. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Just listening to the last episode of the podcast This Week in Virology where they're discussing how to run proper vaccine trials.
    At 98.38 min:

    - 30 000 people is not a trivial number to recruit. If that's what you think. To have a properly powered trial, then that's the number you have to look at. Not a thousand. Not 1 500. Ok, that's the point.
    - You can't move the goal posts as you go.
    - Just like with ME/CFS. You can't change your criteria midway through.
    - Exactly, right.

    and then they're all giggling, because just the idea is so ridiculous.

    https://www.microbe.tv/twiv/twiv-660/
     
    Last edited: Sep 6, 2020
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  6. Andy

    Andy Committee Member & Outreach

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    Link to copy and paste if anybody wants to go straight to that part.
    Code:
    https://youtu.be/wvEU4XT323c?t=5886
     
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  7. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    It would be good to see Virology do an episode on long covid and an overview and catch up with David Tuller for new listeners.
     
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  8. Kalliope

    Kalliope Senior Member (Voting Rights)

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  9. rvallee

    rvallee Senior Member (Voting Rights)

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    Do notice the bio. I generally agree that exercise is incredibly good for health (and fun) but this cult of 'exercise is a panacea' is way overdue for some reality adjustment. Good to see some people in the field are coming around to it.
     
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  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Is anyone coming round to it. Isn't his 'Pacing' just doing the exercise more gently when there should be no mention of exercise at all until there is some evidence.
     
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  11. rvallee

    rvallee Senior Member (Voting Rights)

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    Possibly. But supporting moving away from GET and saying pacing is likely better is something I would not have expected a few months ago. Then again, question is whether he would support saying so to the NICE committee and on the Cochrane review process.

    It's really problematic that pacing apparently means something else in other contexts. I've seen that a few times, equating pacing with gentle GET. I really would like for words to reliably mean things. It sure would be great.
     
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  12. Barry

    Barry Senior Member (Voting Rights)

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    I can only speak for my wife, who is mild/moderate. She does exercise in that she is able to get on and do quite a lot of things, but what she does and when she does it is not driven by any time-based, activity targets, regime, that takes little heed of capabilities. Instead her exercise/activity is naturally guided by what she is capable of. Essentially she works to/within her energy envelope, which is a dynamic thing in itself, but that is the last way that she would model it I think; in fact she does not do it that consciously at all. She just does what she can, and has good instincts about how far to go and when to stop.

    One strategy pays little heed to real time capabilities and is driven by open loop goals relating to time and activity, regardless of capabilities. The other strategy turns that on its head and is governed by closed loop management of activity according to real time capabilities.
     
  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I agree that there has been progress in that people like this have to change what they say. Whether they change what they think or do is another matter.

    At least they are on the back foot, even if they like to pretend they are dancing out front.
     
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  14. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Yes, that is pacing.
    I doubt his is.
     
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  15. cassava7

    cassava7 Senior Member (Voting Rights)

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    It seems times might be changing, oddly enough!
     
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  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I don't see much change in the mindset. Firstly there is still an assumption that somehow this guy is still the expert - having 'learned it's about storing energy' somehow. What energy is he talking about? Certainly not ATP. Secondly, the rest today is so that you can do MORE TOMORROW. Why doesn't he just admit that it might be better for people to listen to their bodies and take things as they come. I guess that wouldn't be good for business though.

    Yes, the message seems to be getting coverage but no I don't think anything is sinking in.
     
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  17. Andy

    Andy Committee Member & Outreach

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    Could be worth someone sharing this tweet with him?

     
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  18. alktipping

    alktipping Senior Member (Voting Rights)

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    paul garner should be careful about his wishes considering were so called specialist opinions have led regarding complex issues with huge gaps in knowledge .
     
  19. rvallee

    rvallee Senior Member (Voting Rights)

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    One small step at a time. Maybe someone worth reaching to for @PhysiosforME? I assume it would be received better coming from peers. And definitely that tweet from Garner is a good intro, I assume he has been seen enough by now to be familiar. What a force he is.
     
  20. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I have experienced 5 major #longcovid relapses in 3 mo. This video explains why: HR>110, into anaerobic threshold. Why isn't this information more widely disseminated? WE NEED GUIDANCE NOW. Stop pussy-footing. Draw on ME/CFS research and experience.

    Garner says he is a founding member of Cochrane. He runs the Centre for Evidence Synthesis for Global Health

    He should know why this information has not been widely disseminated - because of the Cochrane system and its GRADE and ROB tools allowing poor quality evidence to be accepted. And he is still saying 'I do not blame Cochrane'.

    And yet the irony is, as alktipping points out, the evidence on heart rate monitoring tells us nothing conclusive yet either. If it is all about anaerobic threshold then why do people get PEM from mental exertion?

    This is why I say that the sort of discussion that we have on S4ME is actually way above what goes on much of the time within academic medical circles themselves. Genuine open critique is rare and constructive debate almost unheard of.
     
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