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  1. Jonathan Edwards

    The Concept of ME/CFS, 2024, Edwards

    I am very uncertain about that. It used to be said that rheumatoid arthritis was often triggered by infection or trauma but it probably isn't. When I asked people about lag between infection and ME/CFS onset the results were pretty variable. It may well be that infection is often the straw on...
  2. Jonathan Edwards

    2024: Call for a Research Case Definition Consensus Statement for ME/CFS

    I agree. I wondered why my name was not on the list and then remembered that Caroline had asked me to sign and I politely said no thanks, for these reasons.
  3. Jonathan Edwards

    Preprint Underdiagnosis of myalgic encephalomyelitis/chronic fatigue syndrome-like illness in a large integrated healthcare system, 2024, Wood, Unger et al.

    I have no direct insight but from my perspective of being a physician/scientist trying to define what makes ME/CFS a useful concept this sort of questionnaire approach also seems hopeless. My understanding of the PEM phenomenon has nothing to do with it having to be regular or often. I tend to...
  4. Jonathan Edwards

    The Concept of ME/CFS, 2024, Edwards

    I have added a reply.
  5. Jonathan Edwards

    The Concept of ME/CFS, 2024, Edwards

    Partinen did not officially review. He commented on a review. But I will have another look.
  6. Jonathan Edwards

    The Concept of ME/CFS, 2024, Edwards

    I have posted responses to reviewers. I don't see any need to change the paper?
  7. Jonathan Edwards

    Oslo Chronic Fatigue Network

    It's a bit like the man with the sandwich board in Golders Green High Street calling people to repent their sins and love Jesus (and yes, ours is a Jewish neighbourhood although I am a Celtic atheist).
  8. Jonathan Edwards

    Clinical Remission After Therapeutic Apheresis in a [ME/CFS] Patient : A Case Report, 2024, Burgard

    Not really, I would have to quote the entire account. It is all meaningless. There was no evidence of inflammation. Autoantibodies to adrenergic receptors are of no known relevance - they occur in normals as much as disease. Assays for immune complex containing C3d were abandoned for clinical...
  9. Jonathan Edwards

    Clinical Remission After Therapeutic Apheresis in a [ME/CFS] Patient : A Case Report, 2024, Burgard

    The paper reads as something written by someone who understands nothing about interpreting immunological tests. It is a sort of shaman with a wand meets high tech lab on a dark night stuff. Unsurprisingly coming from German private practice.
  10. Jonathan Edwards

    Blood pressure monitors and how to use them; taking a blood pressure measurement; continuous monitoring

    I am not clear why we would want continual blood pressure tracking? Maybe to look for episodes of postural hypotension? It looks as if the cuff less tracker gives a fairly similar result to a cuff-based system for continual tracking but I doubt that in any way resolves the problems of body cuff...
  11. Jonathan Edwards

    Australia: National Health and Medical Research Council (NHMRC): Development of ME/CFS guidelines

    The NHMRC has contacted the College advising that they will be establishing a Guideline Development Group and have requested that the College nominate members with expertise in: This sounds pretty bad I am afraid. The guideline will presumably be written by the people with the greatest vested...
  12. Jonathan Edwards

    Transcriptional reprogramming primes CD8+ T cells toward exhaustion in Myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Iu, Hanson et al

    The quote looks very confused to me. This idea - yes an idea- that T cells are exhausted and can be de-exhausted in a useful way seems to me to completely ignore crucial dynamic and compartmental factors. T cell populations are constantly dividing, undergoing maturation and dying off at...
  13. Jonathan Edwards

    Transcriptional reprogramming primes CD8+ T cells toward exhaustion in Myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Iu, Hanson et al

    Certain measurements are referred as T cell exhaustion but I very much doubt that has any reliable functional meaning in real people rather than mice. If you think about it, what experiment could have been done to reliably show that there was a functional meaning in the context of various human...
  14. Jonathan Edwards

    Blood pressure monitors and how to use them; taking a blood pressure measurement; continuous monitoring

    I don't know what the 'Nursing in Pactice' website is - never heard of it. I suspect it is a commercially sponsored dumbed down site for selling stuff to health professionals.
  15. Jonathan Edwards

    Blood pressure monitors and how to use them; taking a blood pressure measurement; continuous monitoring

    This advice is completely useless and ill-informed. Which is not surprising I am afraid. Taking a blood pressure is quite a tricky skill, which medical students and junior doctors used to spend a few years getting really good at. All the stuff about cuff size and level is pretty irrelevant...
  16. Jonathan Edwards

    Oral minocycline therapy as first-line treatment in patients with Myalgic encephalomyelitis and long COVID: A pilot study, 2024, Miwa

    You can't really have a first line therapy if there is no second line therapy. And there ain't.
  17. Jonathan Edwards

    Open Germany, Greece, Italy, Spain: Safety and Efficacy of Anakinra Treatment for Patients With Post Acute Covid Syndrome (PRECISION)

    It is a cytokine blocker, not an antiviral. It is fairly weak I other conditions except genetic fever syndromes. It is a reasonable thing to try to see if il-1 is involved but I would not put much money on it.
  18. Jonathan Edwards

    Maeve Boothby O'Neill - articles about her life, death and inquest

    Nice will also review the evidence on dietary management and strategies such as tube feeding for patients with severe ME, to examine whether its guidelines need amendments. If that is so, it is a major policy change from Peter Barry's position until now that a review was not practicable - at...
  19. Jonathan Edwards

    Blood pressure monitors and how to use them; taking a blood pressure measurement; continuous monitoring

    It is very unlikely that blood pressure is different In different rent arms. (There are some rare causes due to blockages.) It is much more likely that different readings reflect unreliability of the device. The NHS seems often to use unreliable machines. The only thing I now trust is a...
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