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  1. Jonathan Edwards

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

    It might seem so, but if effort preference is of any relevance to explaining ME it has to be something that occurs inappropriately in ME. Otherwise it is simply normal rational behaviour. Let us suppose that all the healthy volunteers were put on an island where they all succumbed to an illness...
  2. Jonathan Edwards

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

    Another dumb question from me, not having the effort preference to wade through the protocol to get this clear: Were the patients chosen by Walitt and rubber stamped by the expert panel? Did the expert panel chuck some out? If not and the selection was made by Walitt we do have a serious query...
  3. Jonathan Edwards

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

    But a I understand it being able to do the tasks and choosing not to choose them would be an abnormal 'effort preference' but not being able to do the tasks and choosing not to choose them would just be being sensible - or indeed pacing. So for the conclusion of abnormal effort preference to be...
  4. Jonathan Edwards

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

    But doesn't this come round in a circle a bit. Either they choose not to choose hard tasks because they fail them, which is a sign of a healthy strategy and so cannot be used to argue that they have ME symptoms because of 'effort preference'. Or in fact they did choose not to choose tasks they...
  5. Jonathan Edwards

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

    A stupid question from me: if buttoning pressing does not decline more in ME cases but failure occurs more often is this due to pressing 'wrong' buttons? I think the argument is definitely intended to be that no difference in decline of button pressing rate mean that the patients are not even...
  6. Jonathan Edwards

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

    EndME quoting Walitt: "He mentions that this participant clearly had no problem completing certain tasks but rather chose not to (which we can all agree with), which to them indicates that this is either an invalid performance or an invalid task administration." But the conclusion of the study...
  7. Jonathan Edwards

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

    You are all doing a great job on this @Murph. The multiple levels of failure is worth itemising. I would just advise against any suggestion that ME/CFS is a 'physical disease' that excludes consideration of effort. diseases involving events known to us as thoughts are just as physical - they...
  8. Jonathan Edwards

    Graded exercise therapy compared to activity management for paediatric [CFS/ME]: pragmatic randomized controlled trial, 2024, Gaunt, Crawley et al.

    I think I met with NICE in late 2019 or maybe even 2020. So the commenter was likely fully aware of these results?
  9. Jonathan Edwards

    Graded exercise therapy compared to activity management for paediatric [CFS/ME]: pragmatic randomized controlled trial, 2024, Gaunt, Crawley et al.

    I am reminded of the comments made by a NICE committee member with a link to Bristol in response to my witness statement on trial problems. It was pointed out that GET as in PACE was no longer used so PACE could be ignored (maybe not a good tactical point to make). It was also pointed out that...
  10. Jonathan Edwards

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

    Looking again at this sentence in the abstract, it has three components, A, B and C. A=effort preference B=dysfunction of integrative brain regions C=consequences on autonomic functioning and physical conditioning. The claim that they have actually found B is a bit of a joke but we can take B...
  11. Jonathan Edwards

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

    Maybe they weren't pacing properly because they were confused by the instructions.
  12. Jonathan Edwards

    Sense about Science: Join our talks on science, scepticism and free speech (Garner et al)

    You only need to join such an academy if you have no ideas at all and worry, like Scarecrow in Oz that you don't have brain and people might notice. But Scarecrow was much nicer.
  13. Jonathan Edwards

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

    High profile scientists are often stupid unfortunately. Perhaps particularly people who become figureheads. The people on S4ME are amazing but I don't think they are so unusual. The just have a bit of nous, and a lot of academics don't.
  14. Jonathan Edwards

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

    What is Koroshetz role here? Is he just a figurehead cum cheerleader for the study? Is he seriously asking patients to believe this?
  15. Jonathan Edwards

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

    This looks to me like complete bullshit. What finding? What meaningful result? Estimating reward does not come in to falling on the floor feeling sick. There may be a difference in brain activation but who is to say it is an 'abnormality'? If abnormalities in the immune system are driving it...
  16. Jonathan Edwards

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

    No, I wasn't intending to claim that, just that in ME the response can be much more prolonged. I don't think it really matters to the argument that these are the 'flu signals' and not the 'pacing signals' that would determine effort preference.
  17. Jonathan Edwards

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

    You seem to have it right, Trish. Trouble is if you have a field of study where the ratings for a Michelin Star for a cheeseburger are judged by cheeseburger producers you are likely to get quite a lot of MacD*** outlets.
  18. Jonathan Edwards

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

    Yes, I was not particularly suggesting using this as an argument in a critique. It was more just suggesting reminding ourselves how far away from any rational argument their interpretation of data like this is.
  19. Jonathan Edwards

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

    Another simple point is that if an experiment reveals the cause of some pathological state, you expect to see more or less complete separation of populations. If it really is the single cause, which is quite often identifiable, the separation must be complete. Correlations and slopes and box...
  20. Jonathan Edwards

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

    I think it is worth while to look at issues at all levels. I tend to focus on the broad brush but I think the detail is equally important. One simple thing I am wondering about: The paper proposes the general interpretation that peripheral tissues are essentially normal and that the problem is...
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