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  1. Jonathan Edwards

    Trial Report REGENECYTE cord blood cell therapy in post-COVID syndrome: a phase IIa randomized, placebo-controlled trial, 2026, Huang et al

    Not sure what any of this is about but why is this guy Topol getting involved in this sort of fatuous banter on social media. Isn't this just the same rubbish going round and round?
  2. Jonathan Edwards

    Trial Report REGENECYTE cord blood cell therapy in post-COVID syndrome: a phase IIa randomized, placebo-controlled trial, 2026, Huang et al

    I think we have to appreciate that in the last ten to twenty years, in some parts of the world, very much including the USA, any formal distinction between medical science and either crackpot ventures, or fraud, or both has disappeared. Things have changed out of all recognition. Just as people...
  3. Jonathan Edwards

    The gap in fatigue research – and what we’re doing about it, 31 July 2023, The Kennedy Trust & Arthritis UK

    The article is the blurb. I don't see any insight into biological processes. It just seems to be an exercise in putting ducks in a row without knowing what you are going to do with them when they are in a row. I find it hard to see the point of studying fatigue in condition slike rheumatoid...
  4. Jonathan Edwards

    Pros and cons of genetic studies of families who have multiple members with ME/CFS

    I am thinking of the example of lupus, which is probably as 'complex' as any disease. Identifying rare genes was very useful - particularly complement gene deficiencies. By about 1980 we knew that a tiny proportion of lupus cases could be entirely accounted for by individual complement gene...
  5. Jonathan Edwards

    Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

    I am not sure. I don't want to appear to be telling anyone what to do. I am just trying to point out that there may be unexpected consequences of our actions and that we should all take responsibility for those actions.
  6. Jonathan Edwards

    Review POTS, ME/CFS and Long COVID as Neuroimmune Disorders, 2026, Blitshteyn et al

    Also: Is wrong. Most Long Covid gets better before it qualifies as ME/CFS. 'POTS' is so vaguely defined, beyond orthosttic tachycardia, which may be normal, that it is absurd even to make this statement. This is make believe quack medicine pure and simple.
  7. Jonathan Edwards

    Review POTS, ME/CFS and Long COVID as Neuroimmune Disorders, 2026, Blitshteyn et al

    Yup. None of these have been identified convincingly to my knowledge. Certainly nothing has been shown to be an 'important mechanistic factor' even if there are a few data showing differences from normals. The mechanisms are completely unknown.
  8. Jonathan Edwards

    Everything is in The Vagus Nerve: What is The Relationship Between Chronic Fatigue Syndrome (CFS) and Coronavirus?, 2020, Selma

    I continue to be glad that I never signed on for social media meme-rolling in this field!! There was an old saying about empty vessels.... I seem to remember.
  9. Jonathan Edwards

    Everything is in The Vagus Nerve: What is The Relationship Between Chronic Fatigue Syndrome (CFS) and Coronavirus?, 2020, Selma

    Yes, but the chances that tickling the vagus nerve would be the right thing to do seem remote and a duff trial in RA is probably not the place to start anyway.
  10. Jonathan Edwards

    Vagus nerve-mediated neuroimmune modulation for rheumatoid arthritis: a pivotal randomized controlled trial 2025 Tesser et al

    Merged post Eric Topol seems to be a science magpie. I think we looked at the studies on this and were underwhelmed.
  11. Jonathan Edwards

    Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

    I disagree. This is an issue that affects young women because ME/CFS is common in young women. Young women are normally more hypermobile than men or older women. The labelling as 'hEDS' was done by physicians who took these people seriously. It then became a problem for other physicians who...
  12. Jonathan Edwards

    Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

    As they are written, I hope. Which is not: It is bound to be a sensitive issue but when I re-read what I wrote think my position was made clear. Perhaps I should put it from a slightly different angle. I do not hold the vast majority of patients and carers responsible for causing problems...
  13. Jonathan Edwards

    Pros and cons of genetic studies of families who have multiple members with ME/CFS

    I assume that you would look at their functions and make intelligent guesses much in the way that that has been done for the Zhang study and Liz Worthy's study. The advantage of multicase family studies is just that it seems likely that rare but heavily risk-bearing gene variants would show up...
  14. Jonathan Edwards

    Pros and cons of genetic studies of families who have multiple members with ME/CFS

    My understanding is that GWAS data on families will not tell us more because that is a statistical game with common variants that are not likely to be causing disease in any direct way. Although members of a family will share 50% of each others DNA my guess is that if rare variants turn up in...
  15. Jonathan Edwards

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Yes, at the last meeting there seemed to be a change of approach.
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