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A general thread on the PACE trial!

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

  1. dave30th

    dave30th Senior Member (Voting Rights)

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    Good idea! I've been talking to Vincent about this. Hope it happens soon!
     
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  2. chrisb

    chrisb Senior Member (Voting Rights)

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    There is an irony here. It looks as though Cochrane Collaboration was set up in 1993. Given that the ideas must have been brewing for some time before that, this corresponds pretty well with the period when, in the UK, the doctors who believed in taking the evidence were side-lined. My experience, as I recall it, was that 1992 or 1993 was the time when the consultant who followed up the progress of my case was closed down, and a spurious clinic set up. Chalmers seems to have had some unhelpful friends in Health Watch.

    I would say that five relapses in three months would be about right for early stage ME. We must not be harsh on Garner. He is coming to terms with brutal reality.
     
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  3. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    Excellent!
     
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  4. obeat

    obeat Senior Member (Voting Rights)

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    Does anyone have a copy of the journal that David Marks editted a couple of years ago to send to Garner?
     
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  6. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Yes, I have a few. Will do this later.

    It's a shame that the one signed by our very own Graham is the one I've highlighted and annotated.
     
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  7. Trish

    Trish Moderator Staff Member

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    I'd give Paul Garner some space. He's sick, he's got a lot to cope with including a job he's presumably unable to do at the moment. He's already doing a huge amount in publicising the story, he's already mentioned in one of his articles that the CFS Cochrane reviews made no sense to him. He's in touch with Charles Shepherd.
     
  8. Barry

    Barry Senior Member (Voting Rights)

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    Interesting point.
     
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  9. Barry

    Barry Senior Member (Voting Rights)

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    Yes.
     
  10. Mithriel

    Mithriel Senior Member (Voting Rights)

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    The relationship between PEM, mental exertion and anaerobic threshold is interesting.

    I studied biology, but I always had trouble with relating what was going on at the level of the organism, the organs, the cell and the biochemistry of molecular interactions in all forms of life. Usually each level is treated separately because it is easier

    My ME has always felt as if most of my body works fine until it is called upon to do more. My body temperature is a bit low but stable until I get cold but it can't put the extra effort into heating me up again. Long before I was diagnosed I had to have a bath or use lots of hot water bottles to get my temperature up. Similarly I can't cool down if I get too hot.

    Once a system has gone wrong it strains my whole body so it goes out of kilter and then I get PEM. It probably happens with processes below consciousness as well.

    I don't know how you would go about testing it but I think it could be one of the keys to my illness.
     
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  11. Keela Too

    Keela Too Senior Member (Voting Rights)

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    I can relate to temperature control issues.
     
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  12. Amw66

    Amw66 Senior Member (Voting Rights)

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    So can I and I don't have ME !
     
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  13. Keela Too

    Keela Too Senior Member (Voting Rights)

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    :rofl:
     
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  14. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

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    thanks for tagging us in this - I hadn't seen it and definitely agree he seems to be someone to link up with
     
  15. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

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    first contact has been made!
     
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  16. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    The "PEM" post mental exertion is very different from the "PEM" post physical exertion and I wish more people would acknowledge this.

    I personally do not experience any excess physical fatiguability after mental exertion (say, a Uni exam) over the next few days, provided I had sufficient sleep and so on. The only physical issues relate to the muscles that were used, eg eyes, hand/arm.

    But if I was to physically exert myself, then this leads not only to physical fatigability, but also extra mental fatigue and brainfog over the next few days.

    But I agree, it is not about reaching some sort of magic "anerobic threshold" heartrate. PEM can be induced without reaching this threshold heartrate. The tight coupling of heart rate and anerobic threshold only occurs during a ramped increase in exercise output (like on a CPET test).

    The brain uses a lot of energy, and the two main hypotheses that explain the 2 Day CPET findings - endothelial dysfunction and afferent nerve peripheral sensitisation (potentially type II, III and IV fibres - Alan Light and others have investigated this sensitisation) and their spinal feedback loops do have analogues in the brain. The purpose of these afferents is inhibitory feedback, to increase predictability of output, when there is something unusual going on peripherally that leads to inconsistent performance, such as fatigue. The headaches also strongly suggest vascular involvement.
     
    Last edited: Sep 14, 2020
  17. Trish

    Trish Moderator Staff Member

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    I think this is something that needs to be explored further. I have just reinforced that supposition for myself recently with a congnitive crash that lasted several days after a couple of weeks of significantly more cognitive effort than usual for me. It was competely different from my much more familiar physical crash - the symptoms were almost entirely cognitive - much slower processing, far more mistakes when typing, short vacant periods where I had no idea what I had been intending to do, losing track when listening to the radio.
     
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  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  19. Mithriel

    Mithriel Senior Member (Voting Rights)

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    I believe that they required a certain number of subjects before they accepted papers for the review. Since funding goes to psychologists they can afford a big trial not to mention that they say that there is no risk from their treatments so they can damage patients to their hearts content while the 2 day CPET testing can't go to large trial because of ethical considerations.

    if I remember correctly, the same thing happened with the research considered when they came up with SEID.
     
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  20. Andy

    Andy Committee Member & Outreach

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    Trial By Error: A Short Talk for UK Docs and Researchers
    https://www.virology.ws/2020/09/17/trial-by-error-a-short-talk-for-uk-docs-and-researchers/
     
    Anna H, Frankie, Sly Saint and 14 others like this.

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