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  1. Jonathan Edwards

    Brian Walitt and his role leading ME/CFS research at the USA NIH

    Agreed. But picking apart bad arguments can be a very useful exercise while you are waiting for a breakthrough. Many many times I have engaged in critical discussions where we have realised that our critical argument doesn't quite follow through and that there is a serious possibility that we...
  2. Jonathan Edwards

    UK: The Clinical Post COVID Society

    I fear that is over-generous. If during acute Covid someone gets lung damage they can be treated as someone recovering from pneumonia. I doubt there is actually any rehab after being in hospital much. You just build up strength and get used to being able to do less. If the complication was a...
  3. Jonathan Edwards

    Brian Walitt and his role leading ME/CFS research at the USA NIH

    I am afraid that this is all too biopsychosocial. It deliberately mixes up biology and psychology exactly as before. It would be nice to use it to encourage more NIH funding (NIH have previously funded better projects so it is not a starting-off point.) I would have to suggest "We appreciate...
  4. Jonathan Edwards

    UK: The Clinical Post COVID Society

    The real problems putting rehabilitation before research that shows it is any use.
  5. Jonathan Edwards

    UK: The Clinical Post COVID Society

    Thanks, I had forgotten we had news of it in February. But the email I received today at least gives me a justification for flagging it up at the Government ME research working party. It also gave me a clearer idea of who was involved.
  6. Jonathan Edwards

    UK: The Clinical Post COVID Society

    I thought it had a poetic touch, even if it wasn't meant to!!
  7. Jonathan Edwards

    UK: The Clinical Post COVID Society

    Merged thread I have received a message indicating that a new professional organisation is being set up (linked to BACME) for post Covid and other post-viral conditionss under Physical Medicine and Rehabilitation with the help of NHS England. The message suggests that the sociaety would be of...
  8. Jonathan Edwards

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    I think that is exactly right. It is quite hard to find a clear way of expressing one's intuitive sense of 'no way' about this but that is a good one. Another way maybe is to point out that the authors are wrong to talk of the brain deciding things. The brain is a forum within which...
  9. Jonathan Edwards

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    A good point. I think there may be a confusion between 'fatigue' in. the sense of fatiguing during a task series and the subjective symptom loosely known as fatigue. They are totally different things.
  10. Jonathan Edwards

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    So basically this is card carrying pseudoscience. We have had this flagged before but I had forgotten it in the context of this study. How on earth did Nath agree to get involved in this project? More importantly how come Walter Koroshetz is prepared to sell it as ground-breaking research...
  11. Jonathan Edwards

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    Another thought recurring: The problem the authors are faced with is finding a task that PWME cannot actually do because of central signals. The Catch22 is that a task that patients cannot do in any clear cut fashion will be a task they wouldn't volunteer for in the first place. So you end up...
  12. Jonathan Edwards

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    And tinnitus? or migraine? or insomnia? The real question is whether it is a Walitt disease or a Nath disease. Walitt says there was nothing wrong so it is a Walitt disease. Nath says there was loads wrong so it is a Nath disease. But Walitt is doing great. Maybe they should have sorted out...
  13. Jonathan Edwards

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    All fascinating analysis. I think there must be something misleading in the decline in button press rate, as bobbler suggests. I am coming round to the simple take home message being: They wanted to see if people failed because they couldn't or because they chose not to try. The most obvious...
  14. Jonathan Edwards

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    We have some good psychologists in the membership. They just don't seem to be chipping in much at present!
  15. Jonathan Edwards

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    Yes, in the paper's discussion they make it pretty clear that being unable to do tasks and having an effort preference not to choose to do them are two mutually exclusive alternatives. That is to say that their concept of effort preference does assume that the person, like HVF, can do the task...
  16. Jonathan Edwards

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    I actually think that not only are experts talking past the common interpreter but the authors are talking past each other. Central immune signals are not going to alter conscious decision making other than through generating unpleasant symptoms and involuntary inhibitions. They cannot be...
  17. Jonathan Edwards

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    This seems a good way of putting it. You set up an artificial situation in which it is far from clear what strategy people are expected to take whether they are ill or well. No amount of clever measurements are going to resolve this as far as I can see. The authors have made use of transcranial...
  18. Jonathan Edwards

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    If 'physical disability' means 'you can't actually do it' - which Nath has specifically denied is the case I agree. But it is still legitimate to study motivation and effort in that context. What is not legitimate is to infer the wrong causal path - that an abnormal effort preference is involved...
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