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  1. Jonathan Edwards

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

    Looking at the article @Lucibee, I think this is OK. She sent me this 'quote' which was her paraphrase, and I said I thought it captured the message. The reason we cannot get out of bed with flu IS a brain problem rather than a muscle problem, as far as we know. It may be partly mediated by...
  2. Jonathan Edwards

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

    It may be for 'flu and the sequence of sentences is not ideal, but if the mechanism is driving symptoms in ME it IS a problem. We don't even know quite what it is protecting against in 'flu and it may well be unneeded there too. It may have evolved as a protective mechanism against food...
  3. Jonathan Edwards

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

    To me the whole problem here is that pWME will be thinking differently throughout the whole process simply because they know that they their disabilities are being studied. Controls will just be happily following instructions. I see no real possibility of extracting any conclusions from fMRI in...
  4. Jonathan Edwards

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

    Quite, the Stat News piece looks like the beginning of a trail of Chinese whispers drawing on whatever men is at hand.
  5. Jonathan Edwards

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

    I am not clear how effort preference differs from central fatigue but someone may be able to clarify that. Effort preference is clearly a bad term and hopefully will gain no traction. But I don't have a particular problem with the general sort of model they propose. Let us say that an...
  6. Jonathan Edwards

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

    Maybe one tangible step forward here is just the list of experts used by SMC. That must surely be a quantum change?
  7. Jonathan Edwards

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

    No. I don't see anything significantly new here. No, not as more than a possible pointer. But if there is a major difference in pathways in men and women it could show up with such small numbers. Take the analogy of inflammatory oligoarthritis in young adults. Take a random sample of 17. They...
  8. Jonathan Edwards

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

    The journal Nature that had a reputation for quality is a thing of the distant past. This is par for the course I am afraid.
  9. Jonathan Edwards

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

    I agree. The only hope maybe is that since this theory is a bit different from the old false beliefs one the BPS juggernaut cannot quite continue on the same tracks. But it is reminiscent of the Mark Edwards story about 'FND' that claims to use MRI data to explain mental processes. The comment...
  10. Jonathan Edwards

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

    I thought the same. I think the T cell populations they flagged up were those with more innate function. Nothing in what they or others have found would suggest a need to clear foreign antigen. This looks to me like pretty low level immunological analysis-by-meme.
  11. Jonathan Edwards

    Channel 4 News 19 February 2024: Features Clare Norton, mother of Merryn Crofts

    As others have said, it all depends on the context. I picked up on the references to physical and not mental but within this presentation I thought nothing was out of step. ME is physical in the sense that all disease is, including schizophrenia and depression if you like. The point being made...
  12. Jonathan Edwards

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

    Interesting question. I Googled MS and PROMS and got this hit first. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9326853/ It looks as if they don't work!
  13. Jonathan Edwards

    Corticosteroids, hydrocortisone, prednisone for ME/CFS

    Another point maybe worth making is that prednisolone doses above 25mg daily produce a very significant high and sense of well being even if you weren't feeling unwell in the first place (as is the case for things like transplant conditioning). When the dose comes down there is a corresponding low.
  14. Jonathan Edwards

    Corticosteroids, hydrocortisone, prednisone for ME/CFS

    Just a neat example of how much meaningless dross is out there in the literature. We have discussed all of those studies on the forum I think. None of them show anything very convincing. The complement abnormalities may pan out as something real but note that complement activation in the...
  15. Jonathan Edwards

    Corticosteroids, hydrocortisone, prednisone for ME/CFS

    I personally think we can be 98% sure there is no inflammation in ME or Long Covid. Even with well documented B cell/antibody driven diseases the problem is not necessarily one of inflammation. The problem is aberrant signalling that may be mediated through immune pathways that normally would...
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