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  1. Jonathan Edwards

    Muscle oxygenation [as assessed by NIRS - Near Infra-Red Spectroscopy]

    I cannot make head nor tail of this. It is time these physiologists explained things more clearly and stopped using impenetrable jargon. I strongly suspect that you cannot deduce much from NIR spectroscopy because so many parameters may shift - much as others have suggested.
  2. Jonathan Edwards

    Clinicians urged to move away from ‘doctor knows best’ view

    Humility is the key - and something drummed into me by my physician father but not something I always saw in colleagues to be sure. But I don't think this study is the answer. The reason you do not ask patients for accounts of the symptoms they think are important is largely that those symptoms...
  3. Jonathan Edwards

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

    A smorgasbord of excellent questions, @EndME. In fact that is pretty much exactly as we thought when I left off fifteen years ago and almost nothing has changed other than the appearance of CAR-T now. For RA we identified four crucial positive cycles, one of which was dependent on random...
  4. Jonathan Edwards

    To Live Past 100, Mangia a Lot Less: Italian Expert’s Ideas on Aging

    My mother ate a lot of bananas and is now 102.
  5. Jonathan Edwards

    Evidence of neuroinflammation in fibromyalgia syndrome: a [18F]DPA-714 positron emission tomography study, 6/2023, Mueller, et al

    That study is underwhelming. They found some shifts in gene expression in circulating monocyte including it seems more CD16 (the main marker of 'non-classical' state). This sort of 'activation' of monocytes in the absence of something straightforward such as raised CRP or ESR is pretty hard to...
  6. Jonathan Edwards

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

    It is interesting to see this people getting themselves tied in knots about terminology. If psychological and biological cannot be distinguished then presumably there is no point in talking about a biopsychosocial model or publishing, as Wyller has, in 'Biopsychosocial Medicine'. He is being...
  7. Jonathan Edwards

    Evidence of neuroinflammation in fibromyalgia syndrome: a [18F]DPA-714 positron emission tomography study, 6/2023, Mueller, et al

    Maybe because nobody could work out what it means? I tried to understand it but it is couched in so much jargon that I could not work out even what they were measuring. They seem to have found increased 'distribution volume' in some places but less in another with p values that look marginal...
  8. Jonathan Edwards

    New 'Exercise Pill' Could Induce Fitness Benefits Without Exercise

    I can see it now - the Post Exercise-Pill Post-Exertion-Reminiscent Malaise In Non-exerTers trial.
  9. Jonathan Edwards

    UK: Astriid - a matchmaking service between the chronically ill and employers

    Do people think that this is a useful categorisation 'Energy-Limiting Conditions'? It is not something I am aware of medical professionals talking about. The net seems to be cast very wide - including about 7% of the population. Is it helpful in terms of educating authorities about the nature...
  10. Jonathan Edwards

    The NIH should create an Office of Infection-Associated Chronic Illness Research - proposed by the American Association of Scientists, 2024.

    Lupus is under three or four medical specialities. It gets a relatively high level of research funding because medics find it interesting. Lupus research is done all over, without a lupus institute. My work on rheumatoid wasn't in a special rheumatoid institute. I had a small group and we made...
  11. Jonathan Edwards

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

    This behaviour goes back to the mid 1980s soon after the internal market was set up. People who take on these jobs know exactly what they are doing and how cynical they are being -getting extra Brownie points, an A merit award and all that goes with it. By 2010 people were jockeying to get into...
  12. Jonathan Edwards

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

    Just to be clear, there is a very real choice for potential medical directors - not to apply for a job that cannot be ethically performed, or to resign when that becomes the case. I have seen that choice deliberately not being taken too many times. Doctors have perfectly good salaries without...
  13. Jonathan Edwards

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

    Yes, I realised that after writing it quickly and decided not to edit since as you say later, the real problem is elsewhere. I guess I should have said that the medical director should have made sure that he had negotiated sufficient commissioning with the purchaser to ensure that a safe...
  14. Jonathan Edwards

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

    I can only quote one case report. I looked after a patient who had developed lactic acidosis from phenformin (a diabetes drug). She became comatose and had to be ventilated. Her lactic acid levels (everywhere) were higher than my senior colleagues had ever seen. We infused her with bottles of...
  15. Jonathan Edwards

    The NIH should create an Office of Infection-Associated Chronic Illness Research - proposed by the American Association of Scientists, 2024.

    If only it was so easy! Why not set up an institute for writing Schubert's greatest piano sonata (the one he didn't write cos he died). All you need is robust funding, infrastructural resources... Yeah. What if John Cage is put in charge?
  16. Jonathan Edwards

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    The following posts have been moved from another thread But the 2 day CPET is not an objective measure of PEM. PEM is a symptom that is either there or not. If you have PEM and a normal second day CPET you still have PEM. The second day CPET does not demonstrate PEM. Its value is in possibly...
  17. Jonathan Edwards

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

    And of course Paul Garner is supposed to be an international expert on why one should behave differently, but he doesn't.
  18. Jonathan Edwards

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

    A fair question but I think there are lots of possible answers. Moreover, the timing of PEM does not fit with a build up of metabolites because it goes on too long despite rest. Take the simple example of using a are to clear leaves from a drive. Five minutes of raking produces no ill effects...
  19. Jonathan Edwards

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

    'Velvety skin' is such a subjective thing you can diagnose it in almost anyone. People with true EDS with skin changes have visibly abnormal patches of redundant skin or scars. But those who have skin changes are not hEDS, they are genuine monogenic EDS cases and probably mostly have...
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