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  1. Jonathan Edwards

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

    It is was if Nath is at the stage of knowledge of ME I was in during the first 3 months of getting interested in it - before going to an IiME conference. As if he has never been to an ME science meeting or read the literature or stopped by S4ME.
  2. Jonathan Edwards

    MECFS data analysis thread

    I think we actually know that already. And even if a slight shift in metabolism shows up on several studies it is more likely to be some downstream effect of what sort of activity PWME undertake or what pills they swallow. Unravelling mechanisms isn't usually like squeezing blood out of a...
  3. Jonathan Edwards

    Review Waste Clearance in the Brain, 2021, Kaur et al.

    I would just warn that all this stuff is likely to be wrong. Fluid compartment dynamics is something that 90% of medics and physiologists have misunderstood for over a century. The one person who understood this well was J Rodney Levick. He and I worked on synovial joint fluid dynamics in the...
  4. Jonathan Edwards

    Is joint hypermobility linked to self-reported non-recovery from COVID-19? Case–control evidence ... , 2024, Eccles et al

    If I remember rightly there is no evidence for any of the patients in the Mudie study actually having EDS. I think it was just that someone had told them they had - which is hopelessly inadequate since so many 'ME physicians" diagnose EDS on anyone with loose joints. It is also extremely...
  5. Jonathan Edwards

    MECFS data analysis thread

    I admire your enthusiasm, Murph but I think the answer is no. Having spent a lifetime chasing clues in pathogenesis in chronic disease I know that the clues that matter tend to stick out like a sore thumb. Small statistical differences, which is all we have ever seen for anything in ME, aren't...
  6. Jonathan Edwards

    Is joint hypermobility linked to self-reported non-recovery from COVID-19? Case–control evidence ... , 2024, Eccles et al

    Come on @Hutan, the things you mention make no sense in terms of explaining why PWME are unwell. There are people with gross collagen abnormalities of all sorts who do not feel as if they have ME. You can dream up 'vague indications' for anything. Why on earth should flexibility make you more...
  7. Jonathan Edwards

    TSHR-based chimeric antigen receptor T cell specifically deplete auto-reactive B lymphocytes for treatment of autoimmune thyroid disease, 2023, Huang+

    Most strategies just kill mid-maturation B cells but the bulk of autoantibody is produced by more mature plasma cells some of which live for months, some for decades. If autoantibody is produced by short lived plasma cells then depleting B cells starves the system of new plasma cells and...
  8. Jonathan Edwards

    "Failings in the care of patients with Very Severe ME" by Dr Nigel Speight, 2024

    There is an interesting passage in the Byline Times piece: In 2021, 27-year-old Maeve Boothby O’Neill died after she became too unwell to take in food and water due to the severity of her ME. She was discharged three times when an NHS hospital allegedly mishandled her care and she died at home...
  9. Jonathan Edwards

    Is joint hypermobility linked to self-reported non-recovery from COVID-19? Case–control evidence ... , 2024, Eccles et al

    It is a long story, hidden in the threads, but in brief. I was involved in the hypermobility story early on in 1978 when Rodney Grahame set up a clinic at Guy's Hospital in London. It was my research base. We wrote a paper on cardiac involvement that didn't really make sense. I was too junior...
  10. Jonathan Edwards

    Amyloid-Fibrinogen Aggregates Microclots Predict Risks of Disseminated Intravascular Coagulation and Mortality, 2024, Schofield et al.

    There is no doubt that aggregates containing fibrin that stain with ThioT exist - you can see them in the micrographs. The question is whether or not anything similar exists in vivo or whether perhaps ThioT acts as a nucleating agent. They are not clots as normally understood. It would be...
  11. Jonathan Edwards

    Amyloid-Fibrinogen Aggregates Microclots Predict Risks of Disseminated Intravascular Coagulation and Mortality, 2024, Schofield et al.

    It looks as if these post-centrifugation aggregates occur in plasma from people whose coagulation systems are already partially activated in vivo. I wonder whether the aggregates are any better at telling that than standard coagulation screens. Since disseminated intravascular coagulation is...
  12. Jonathan Edwards

    'Curable' mind-brain training app and ME/CFS, including the role of Fiona Symington

    Not so much problematic as barn door nonsense. Most walls have some cracked bricks. That doesn't mean that cracked bricks do not cause walls to collapse. Research that starts out with this level of stupidity might as well go in the bin from the outset.
  13. Jonathan Edwards

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Yer, well, some emeritus professors knows their stuff and others don't, seems to me. Fiona needs to learn a little about the real world of science and the phoneys who tag along.
  14. Jonathan Edwards

    'Curable' mind-brain training app and ME/CFS, including the role of Fiona Symington

    Yer, well, some emeritus professors knows their stuff and others don't, seems to me. Fiona needs to learn a little about the real world of science and the phoneys who tag along.
  15. Jonathan Edwards

    "Failings in the care of patients with Very Severe ME" by Dr Nigel Speight, 2024

    Yet one commonly hears of ME patients being told they have gastroparesis. If it really exists in ME and causes severe weight loss why haven't physicians at least written case reports?
  16. Jonathan Edwards

    'Curable' mind-brain training app and ME/CFS, including the role of Fiona Symington

    Interesting to see that this pain reprocessing therapy (PRT) seems to have been invented by an NIH project: https://www.nih.gov/news-events/nih-research-matters/retraining-brain-treat-chronic-pain It seems to have emerged from addiction, mental health and 'translational' departments but could...
  17. Jonathan Edwards

    'Curable' mind-brain training app and ME/CFS, including the role of Fiona Symington

    Curable looks to be a rather nasty scam, certainly.
  18. Jonathan Edwards

    Is joint hypermobility linked to self-reported non-recovery from COVID-19? Case–control evidence ... , 2024, Eccles et al

    This is pure nonsense, propagated by people like Peter Rowe and Rodney Grahame, I'm afraid. Generalised joint hypermobility just means you have relatively stretchy ligaments around joints. 20% of the population are the 20% stretchiest. And 20% are the 20% least stretchy. Women are stretchier on...
  19. Jonathan Edwards

    "Failings in the care of patients with Very Severe ME" by Dr Nigel Speight, 2024

    This is my worry. I am not sure what easy digestibility would have to do with gastroparesis. High roughage foods are generally thought to be good, not bad. Once masticated and exposed to pepsin it is all pretty much a soup anyway I guess. My memory is that fat stimulates cholecystokinin, which...
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