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  1. Jonathan Edwards

    Grip test results and brain imaging in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    Yes I am getting that now. I am so glad S4ME members are such Trojan data readers. I give up when I cannot see what a result is supposed to mean. It is useful to know there isn't even a result!!
  2. Jonathan Edwards

    CAR-T therapy

    The sceptical response would be that we had pretty much as good results as this in our first lupus study in 2000 with rituximab. But I am very happy to hope that these remissions pan out longer. One thing that this finally puts to rest is the view that B cell depletion was not much use for...
  3. Jonathan Edwards

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

    Don't know. It is a bit surprising to me but may be within normal expectations.
  4. Jonathan Edwards

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

    Agreed. It seems they could be picked if they fulfilled Fukuda, IOM or CCC and in reality they most consistently met IOM. But the point about immune and neuroendocrine features is what I regard as 'over-imaginative' about CCC. A sensible physician would ignore those, since they are...
  5. Jonathan Edwards

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

    @dave30th you really must get up to speed on your metaphors. We did it in year 5, along with the siege of Pondicherry. You shut the stable door after the horse has bolted.
  6. Jonathan Edwards

    Grip test results and brain imaging in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    I have no knowledge of previous work in the field but I would have thought increased responses were equally consistent with patients being more engaged and that reduced responses in HVs were due to them going on to 'autopilot'. To be honest, I think if the authors wanted to study brain events...
  7. Jonathan Edwards

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

    Together these findings suggest that effort preference, not fatigue, is the defining motor behavior of this illness. This comment is meaningless. Fatigue is not motor behaviour, it is sensory. They don't even know how to construct a coherent argument.
  8. Jonathan Edwards

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

    Actually, I think it is likely that people making conscious decisions just IS neurons making decisions based on their chemical/electrical environment. That is what the biological, rather than the BPS account, would say. But I think your intended meaning is quite right - if conscious meaning...
  9. Jonathan Edwards

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

    Nor is it what exertion intolerance is intended to mean, to my mind. The EI in SEID I have assumed implied something like 'food intolerance' in the sense of adverse reaction with PEM. Here they are just using it to mean having had enough. Again it suggests that the authors have no real idea of...
  10. Jonathan Edwards

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

    A barn door is usually a door twelve feet high and twenty feet wide. So a barn door case is a case about which there is no reasonable doubt. I was just implying that although the CCC is a bit over-imaginative in what it asks for if only 17 people were picked out of 200 and everyone agreed one...
  11. Jonathan Edwards

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

    'The mills of S4ME grind slowly, but they grind exceeding small.'
  12. Jonathan Edwards

    Grip test results and brain imaging in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    I think you are right to be worried if this long list of authors are collectively unable to come to a sensible interpretation of their own data. The raw data might be more interesting. What may be a useful step forward is showing differences on fMRI between groups in this sort of context. If it...
  13. Jonathan Edwards

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

    Which maybe is right. But of course it is then not telling us about what is wrong that makes people need to pace. Working in medicine one gets to realise that not many clinical investigators can think thoughts that complicated!
  14. Jonathan Edwards

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

    That paper may change things but I have two caveats. One is that many previous papers have claimed to find things that have not replicated. The bigger concern for me is that it would be hard to see how necrosis after exercise could explain PEM - which is a generalised symptom. In years past I...
  15. Jonathan Edwards

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

    I suspect that there are scores of known programmed defence responses with varying time scales. Some of them may come under 'sickness response' but that probably includes a whole range of different mechanisms with different times cases too. Ones I can think of: Tanning with sun exposure...
  16. Jonathan Edwards

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

    Possibly but I am not sure that is so likely. Fighting a micro-organism is largely a matter of things like cloning up some lymphocytes and maybe replenishing some proteins made by the liver. I don't think we really know. It might be a mechanism for keeping you away from infecting too many other...
  17. Jonathan Edwards

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

    OK, but this IOM statement is no good. Measurements of heart rate and BP are not measures of 'worsening of symptoms'. This is typical of the ramshackle way these criteria get devised. We are told that all patients satisfied IOM, so presumably the assessors did not take this statement literally...
  18. Jonathan Edwards

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

    But it was a group of people feeling robust enough to spend a week having tests - which is not representative.
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