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  1. Jonathan Edwards

    Gastroparesis, post-prandial pain, eating difficulties

    They are very much part of a brigade, even if that isn't the way things were presented. I have heard this story of clinicians, and yes gastroenterologists commonly get onto this bandwagon, discovering this associations between 'EDS', 'POTS', gastroptosis and goodness knows what for at least 15...
  2. Jonathan Edwards

    Gastroparesis, post-prandial pain, eating difficulties

    The gastroptosis has always been considered quackery and I doubt it has changed. The stomach does not 'fall down' because it is full of food. The abdomen is a bit like a bag full of wet fish - one being the stomach. The stomach does not fall down any more than any of the other bit any more than...
  3. Jonathan Edwards

    USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

    I absolutely disagree. Science isn't about millions of dollars. It is about being very clear about reasoning and astute observation. S4ME is quite capable of changing the lives of people with ME/CFS. I am serious. There is enough intelligence here to solve the problem with just one lead from a...
  4. Jonathan Edwards

    USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

    That applies to third rate academics - which may be the majority but they are irrelevant. The people who actually get things done l one critique. It sharpens the arguments. As an academic I would pile on the pressure and criticism. I don't see a lot of point in setting up drug studies if nobody...
  5. Jonathan Edwards

    UK:NHS: Feel Good Tennis for Long Covid

    Too bad the Surgery only gets 2 1/2 stars out of 5 on Google.
  6. Jonathan Edwards

    Illness perception in functional neurological disorder: low illness coherence and personal control 2024 Joos et al

    We keep telling the patients that it's biopsychosocial but they keep thinking its piobysoscholial. Why can't they just get on with doing what they're told?
  7. Jonathan Edwards

    Diverse immunological dysregulation, chronic inflammation, and impaired erythropoiesis in long COVID patients with chronic fatigue syndrome, 2024

    I wonder why anyone would want to publish in J Autoimmunity, which has been regarded as the dross of clinical immunology. It is not as if this is even an autoimmune disease, although they make passing mention of autoantibodies. To get my interest up in reading a paper I need the abstract toggle...
  8. Jonathan Edwards

    CAR-T therapy

    I can't really follow what you are saying there. 6 months is much too short to judge reset. It is more like 5-8 years. Relapse with heavy duty immunoablation tends to come in over five years. With rituximab it continues for up to 8 years. To be reasonably convinced of some resets I would like...
  9. Jonathan Edwards

    Medscape: If It Feels Like Fibromyalgia? 'It Probably Is' - Fibro article linked to from MEA facebook

    I am not sure that tests for IgE are reliable enough to make that sort of negative statement. You would need to be sure you knew the precise antigen and have a good IgE assay for it. My understanding is that allergy tests are pretty unreliable. But if there is no evidence for an allergic...
  10. Jonathan Edwards

    BBC: Long Covid course [LP] is ‘exploiting people’, says ex-GB rower, 2024, article and radio program

    The point I am making has nothing to do with overall credibility. It is a matter of what I was entitled to claim as an outside observer being interviewed by journalists. The journalists already had a first hand story of people reporting being worse after LP. I could not add anything to that. But...
  11. Jonathan Edwards

    BBC: Long Covid course [LP] is ‘exploiting people’, says ex-GB rower, 2024, article and radio program

    But I personally do not have any special evidence about any of that. About the pacing either. I think I do have proof people felt humiliated - because it is not credible for there to be a coincidence with humiliation whereas there is for 'physical worsening'. I have to be very careful to stick...
  12. Jonathan Edwards

    BBC: Long Covid course [LP] is ‘exploiting people’, says ex-GB rower, 2024, article and radio program

    I don't doubt that people think they were made worse by LP but I don't have proof. Simply because we have no physical proof of anything going on in ME/CFS. You might say we have no proof of people being humiliated but the link there is easier to be sure of. It doesn't really make sense for it to...
  13. Jonathan Edwards

    Medscape: If It Feels Like Fibromyalgia? 'It Probably Is' - Fibro article linked to from MEA facebook

    Allergy. The term has been around for decades. 'MCAS' is supposed to be activation of mast cells that is NOT an allergy as normally understood.
  14. Jonathan Edwards

    BBC: Long Covid course [LP] is ‘exploiting people’, says ex-GB rower, 2024, article and radio program

    I didn't really see that as the weak point, David. I was disappointed that Rachel Schraer did not seem to understand when I said that LP made people with ME/CFS feel worthless. It sort of went like water off a duck's back. She didn't seem to see the human side of the problem. I have no proof...
  15. Jonathan Edwards

    BBC: Long Covid course [LP] is ‘exploiting people’, says ex-GB rower, 2024, article and radio program

    I agree that there is a big problem here. Being an 'honest broker' actually requires an awful lot of careful research. Which is what scientists are supposed to do and the last thing they are supposed to do is try to give 'balance'. Balance is in a sense a laziness - an inability to present the...
  16. Jonathan Edwards

    Medscape: If It Feels Like Fibromyalgia? 'It Probably Is' - Fibro article linked to from MEA facebook

    That may well be so but it depends on the pre-assumption of 'FND' or 'fibromyalgia', which are much the same diagnosis in this context. When I was a rheumatologist I was happy to see anyone who had pain or similar symptoms. I saw it as my duty to try to analyse and provide advice on any...
  17. Jonathan Edwards

    The Effect of Physiotherapy on Dyspnea, Muscle Strength and Functional Status in Patients with Long COVID Syndrome 2024 Michalas et al

    Er no, these results are enough to say that there is no point in this approach. The result is negative. If it was of any important the p values would be much lower.
  18. Jonathan Edwards

    CAR-T therapy

    They may assume that something else will bring back autoreactive B cells. Most immunologists do. The problem with one or two relapses is that the clinical experiment is unlikely ever to be quite as clean as testing the theory needs. But if relapse is inevitable even with complete clearance of B...
  19. Jonathan Edwards

    CAR-T therapy

    That is a bit strange since it suggests that total IgG goes down quicker than autoantibody. I think there may be an awful lot of uncertainty in these kinetic profiles. I don't like the way they have played around with the axes much. It does look as if profound clearance of antibodies and...
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