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  1. Jonathan Edwards

    A thread on what people with ME/CFS need in the way of service

    We already have assurances like that but of course they are as long as a piece of string. I don't see any way of bucking the system. If someone good has a good idea for a trial they should be able to set it up.
  2. Jonathan Edwards

    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    Not that I know of. Response can take 6 months to evolve and some patients are not at their best until after two cycles. But daratumumab may have different kinetics from rituximab. Theoretically it would all depend on the mechanism of symptoms. Some changes might take 6 months to reverse and...
  3. Jonathan Edwards

    Evidence of White Matter Neuroinflammation in [ME/CFS]: A Diffusion-Based Neuroinflammation Imaging Study 2026 Yu et al

    Not necessarily. The main thing would be not upright. When upright the venous drainage from the brain goes straight into vessels at subatmospheric pressure. Not if you lie down. One of the most basic signs students learn is the jugular venous pressure. When you lie nearly flat the blood in the...
  4. Jonathan Edwards

    Evidence of White Matter Neuroinflammation in [ME/CFS]: A Diffusion-Based Neuroinflammation Imaging Study 2026 Yu et al

    I don't think sedatives would affect the hydrodynamics. The story about glymphatics is clearly very controversial - even among the international experts on brain water flux. I have in the last month corresponded with several and none of them agree with each other but all seem to agree that the...
  5. Jonathan Edwards

    Intersectionality, healthcare and myalgic encephalomyelitis: Reflections from experience, 2026, Hunt et al

    I have to say that I think this sort of use of humanities jargon just confuses everything. We certainly do not need a biopsychosocial approach of any kind. We want everyone to understand that people with ME/CFS cannot 'make themselves better'.
  6. Jonathan Edwards

    O-Glycosylation patterns in Post-viral Fatigue Syndrome: Sialic Acid-preserving Chemical Release, 2025, de Otazo Hernández

    It would be a pity if @Violeta really did disappear. I can understand the confusion for someone new to these things. The problem is a bit more than the hang-over of atom for things that can be divided. There is not only a word hang-over but a concept hang-over. A considerable number of 'ME...
  7. Jonathan Edwards

    Evidence of White Matter Neuroinflammation in [ME/CFS]: A Diffusion-Based Neuroinflammation Imaging Study 2026 Yu et al

    After all the discussion about glymphatics and brain water I do just wonder whether people with ME/CFS might have changes in all these measures as a result of lying flat more. It might be the opposite of normal pressure hydrocephalus where there is too much water outside the brain rather than...
  8. Jonathan Edwards

    O-Glycosylation patterns in Post-viral Fatigue Syndrome: Sialic Acid-preserving Chemical Release, 2025, de Otazo Hernández

    It came from 'myalgic encephalomyelitis' but as part of a confusion between myalgic encephalomyelitis as an acute infective epidemic disease with signs of brain injury and the 'chronic ME' that Ramsay described as following it, which was ME/CFS but Ramsay probably thought it was a later phase of...
  9. Jonathan Edwards

    O-Glycosylation patterns in Post-viral Fatigue Syndrome: Sialic Acid-preserving Chemical Release, 2025, de Otazo Hernández

    Myalgic encephalomyelitis is an anachronistic name referring to apparent localising neurological signs suggesting encephalitis in an acute epidemic illness (at the Royal Free Hospital and maybe in Iceland before) that was thought to precede what we now call ME/CFS. In the end no evidence for...
  10. Jonathan Edwards

    News from The Netherlands

    You can bet your shirt on it.
  11. Jonathan Edwards

    Persistent physical symptoms not explained by structural abnormalities or disease processes: a primary care approach [..] recovery, 2026, Abrahamsen+

    I think that may be because it isn't a study. It is simply a propaganda text. Interestingly the journal calls it a 'research article'. The fact that it is nothing of the sort may indicate that this jounral (Scandinavian Journal of Primary Care or whatever) is run by an editor with no idea what...
  12. Jonathan Edwards

    Open Masters Research Project: Individual's experiences of music with ME/CFS

    And importantly does not have any generally recognised defining criteria. I see a significant problem with the project format at present in that there is no way of arguing that it will be representative of a group (if the group is not well defined and there are major biases that will affect who...
  13. Jonathan Edwards

    Persistent physical symptoms not explained by structural abnormalities or disease processes: a primary care approach [..] recovery, 2026, Abrahamsen+

    It would only impact them or be relevant to them if they did actually accrue benefits or were likely to. And t would also depend on what they might otherwise have written that did not lead to the likelihood of accruing benefits. What you might otherwise write will depend greatly on the status of...
  14. Jonathan Edwards

    Risks for Developing ME/CFS in College Students Following Infectious Mononucleosis: A Prospective Cohort Study, 2020, Jason et al

    That looks a fair analysis. From my own experience of 6 months of feeling not well after IM I think I would have qualified for ME/CFS bar the severity requirement and that would include a symptom that would fit the definition of PEM, although I am pretty sure it was distinct from what members...
  15. Jonathan Edwards

    Evidence of White Matter Neuroinflammation in [ME/CFS]: A Diffusion-Based Neuroinflammation Imaging Study 2026 Yu et al

    Inasmuch as I can follow the paper they are suggesting a change in water content in white matter, which is a characteristic feature of most inflammation. If it is real it would be a good indicator of very low level inflammation (anything more in terms of water change in brain tends to lead to...
  16. Jonathan Edwards

    O-Glycosylation patterns in Post-viral Fatigue Syndrome: Sialic Acid-preserving Chemical Release, 2025, de Otazo Hernández

    The consensus amongst members here is that there is no real evidence for autoimmunity in ME/CFS. There is no relation to other autoimmune disease that I know of, other than some papers suggesting a higher rate of thyroid disease, which may be partly due to overlapping symtoms causing diagnositc...
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