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  1. Jonathan Edwards

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

    Was there any evidence of antigenic stimulation? A few stray T cells possibly but T cells get activated by things other than antigens. Brain biopsy is not a terribly good idea!
  2. Jonathan Edwards

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

    I don't see these results as leading to anything new. The studies on T and B cells are not significant with such a tiny sample. T cell sequencing I think would be a complete waste of time even if we knew what antigen might be around. There is no evidence of antigen being around so there is...
  3. Jonathan Edwards

    A Review of BMJ Best Practice Document on Chronic Fatigue Syndrome by Professor James Baraniuk

    This is an important point. At the Round Table it was made very clear that GET was not recommended because the evidence was inadequate to show efficacy and even if there was a minimal effect, it was demonstrably not cost effective. The concern about harms did not come in to this formal efficacy...
  4. Jonathan Edwards

    Trial Report The Head-Up Tilt Table Test as a Measure of Autonomic Functioning among Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2024, Jason

    That seems a good summary of the problem @EndME. I wonder if there is deeper confusion still. The title of paper is 'Measure of Autonomic Function' but is this valid? My understanding is that if you stand up and your blood pressure falls (OH) that shows that your autonomic system is not...
  5. Jonathan Edwards

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

    This is nonsense but as a necessary upbeat take on a very costly study that was supposed to be groundbreaking it is excusable, and at least a good message to the world. This I think is more problematic, not only nonsense but unhelpful. As far as I can see they have simply shown a weak...
  6. Jonathan Edwards

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

    Copied post This is nonsense but as a necessary upbeat take on a very costly study that was supposed to be groundbreaking it is excusable, and at least a good message to the world. This I think is more problematic, not only nonsense but unhelpful. As far as I can see they have simply shown a...
  7. Jonathan Edwards

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

    In other words, from the outside world this looks like a non event. I think the coverage actually reflects that, in that it is all 'today's little news item' not some big splash with a specific message.
  8. Jonathan Edwards

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

    I was approached by journalists saying 'This looks like a damp squib that the science community is going to forget. But maybe an opportunity to flag up that ME is being taken seriously and some research is being done. Do you agree?' So I said yes and tried to think of something that ordinary...
  9. Jonathan Edwards

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

    I think those just show how dependent rates are likely to be on recruitment routes, @Sid. Maybe blood donors aren't allowed to give blood if they are ANA positive !! Otherwise the 0% looks a bit spooky. My memory is that the UK ME Biobank, which has the advantage that it was not recruited to...
  10. Jonathan Edwards

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

    My impression of 3e is that PWME have acquired a good sense of their fatiguability whereas healthy controls haven't a clue and are all over the shop. Or maybe since it doesn't matter to the healthy controls they haven't taken the preference task seriously It seems a nonsense.
  11. Jonathan Edwards

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

    "Some infectious diseases and cancers have been associated with the development of antinuclear antibodies, as have certain drugs." Certain drugs, like procainamide and anti-TNF yes. The infections I think are esoteric and ANA occurs while the infection is current or for a short while after. EBV...
  12. Jonathan Edwards

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

    If his agenda was to show that effort choice was down in the presence of a healthy body he would have found it convenient to note that the p value was not significant. He might even not realise that the most likely interpretation of that would be type 2 error. In other words although the chances...
  13. Jonathan Edwards

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

    As far as I know positive ANA is not likely to be related to recent viral infection or viral persistence, certainly not speckled. The problem here is that the clinical syndromes associated with a number of ANAs, like speckled or RNP, without anti-DNA antibodies, are probably often quite limited...
  14. Jonathan Edwards

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

    I doubt there is much new. Fiona Powrie used to talk about this stuff at meetings I presented at about 15 years ago. If you take away T regs in mice you mostly get things like inflammatory bowel disease - which is unlikely to be true autoimmunity. I would not be surprised if you took them away...
  15. Jonathan Edwards

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

    Yes, the usual garbling. Not even exhaustion after all? As far as I know T regs have little or nothing to do with most autoimmunity and of course they found no autoimmunity and... it just goes wherever you want it to go, like the average review in 'Trends in Immunology', a word salad of whatever...
  16. Jonathan Edwards

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

    The sample is too small to tell if they found anything in fact. And if they did it seems to me more like an 'odd smell' rather than smoke. It might just as well be the smell of cold damp ash. These labels like 'activation marker' and exhaustion marker' are highly dubious at best. I fail to see...
  17. Jonathan Edwards

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

    Except that this study provides no basis for such trials. It shows no evidence for a need to 'clear antigen' even if checkpoint inhibitors were good for that which I doubt.
  18. Jonathan Edwards

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    I have only just seen this. A think it warrants an apology. Hopefully it was said in the heat of the moment.
  19. Jonathan Edwards

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

    I am thinking more in the terms bobbler is raising, that the measurements of effort choices in this NIH study aren't being taken in a context that can be interpreted as meaning anything at all. The experiments on effort preference are pretty complicated and obscure. They involve what are more or...
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