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  1. Jonathan Edwards

    Orthostatic Intolerance in PwME (POTS?/NMH?) - discussion thread

    For the reasons given in the post above. I am clinically familiar with that situation and it doesn't apply to people with ME/CFS - they do not have warm pink swollen legs in that way. But maybe there is a specific defect that does not occur in other circumstances.
  2. Jonathan Edwards

    Orthostatic Intolerance in PwME (POTS?/NMH?) - discussion thread

    It's a clever idea but I don't think it quite flies, does it? Slowing down blood could increase the oxygen extraction from a given volume of blood but what possible compensatory function could that have? To extract more oxygen over time you want faster flow and return to lungs as quick as...
  3. Jonathan Edwards

    Orthostatic Intolerance in PwME (POTS?/NMH?) - discussion thread

    That sounds complicated. Excessive venous pooling would presumably be due to vasodilation rather than constriction? Maybe venodilation in the presence of arterial constriction but if muscles are being used I would have thought blood would be pumped back to the heart OK. I am also not sure how...
  4. Jonathan Edwards

    Orthostatic Intolerance in PwME (POTS?/NMH?) - discussion thread

    If you look at my posts you will see that that is precisely my point,. POT doesn't seem to be mostly what is causing OI in ME/CFS patients. But that is how POT is defined. Sorry you are having a hard time, but I thin you are making things harder for yourself than needed.
  5. Jonathan Edwards

    Orthostatic Intolerance in PwME (POTS?/NMH?) - discussion thread

    We were discussing the more general relevance of POT. In fact EndME set up a new thread as a result of that side discussion. I am being consistent in not referring to the NIH study. Sorry there was a typo in the last post that may have possibly confused. I am talking about the body of studies...
  6. Jonathan Edwards

    Orthostatic Intolerance in PwME (POTS?/NMH?) - discussion thread

    The other thing is that a high proportion of people with ME/CFS have OI yet do not show POT on testing. So there are good reasons to think POT isn't the real problem.
  7. Jonathan Edwards

    Orthostatic Intolerance in PwME (POTS?/NMH?) - discussion thread

    Sorry but that is simply not the case. The arguments I was making made no reference to NIH data. I don't know anything about their POTS data and wouldn't make use of it anyway, considering the other flaws in the study. There is no coherent story that I can see. Either it is preload failure, but...
  8. Jonathan Edwards

    Orthostatic Intolerance in PwME (POTS?/NMH?) - discussion thread

    I wasn't referring to the NIH findings. I was referring to how one makes a coherent physiological story around the implication of POT in ME/CFS. Maybe the problem is that other people have been convinced of what they are going to find without having thought through whether it adds up in terms...
  9. Jonathan Edwards

    Orthostatic Intolerance in PwME (POTS?/NMH?) - discussion thread

    Except that venous pooling with preload failure would indicate failure of vasoconstriction rather than excess vasoconstriction. I guess it might be possible to put all these things together into a single coherent story but I have a strong suspicion that we have what is called an embarras de...
  10. Jonathan Edwards

    Participatory design of bodysymptoms.org: An interactive web resource to explain multisystem functional somatic symptoms 2024 Saunders, Burton et al

    But presumably the same Chris Burton who has co-authored on other occasions with these Aarhus people giving his address as Sheffield. Maybe he moved?
  11. Jonathan Edwards

    Participatory design of bodysymptoms.org: An interactive web resource to explain multisystem functional somatic symptoms 2024 Saunders, Burton et al

    Is this another Chris Burton - cloned from the one in Sheffield or wherever, or the same one with two addresses? To answer my own question it is the same one, except here with address give as Aarhus. It beggars belief that someone who sat on the NICE Guideline Committee should be turning out...
  12. Jonathan Edwards

    Orthostatic Intolerance in PwME (POTS?/NMH?) - discussion thread

    I understood that POT was defined as in the absence of orthostatic hypotension. I would have thought that the relevant blood pressure was ongoing over a period of many minutes, not immediately after standing, which might easily drop temporarily.
  13. Jonathan Edwards

    Orthostatic Intolerance in PwME (POTS?/NMH?) - discussion thread

    And what evidence do we have for that? And how do we explain the cerebral symptoms with normal blood pressure if that is the case? 'Neurovascular dysregulation' is hand-waving if you don't mind me saying so! I don't see any evidence of autoantibodies. And IVIg is pretty useless at the best of...
  14. Jonathan Edwards

    Orthostatic Intolerance in PwME (POTS?/NMH?) - discussion thread

    Yes, but what would be the mechanism of origin? Why would you get preload failure in the context? Maybe some selective autonomic defect, but as far as I know nobody has suggested what or why. And in a way it cannot simply be preload failure because if that was the cause there should be a fall...
  15. Jonathan Edwards

    Mycoplasma infections in people with ME/CFS

    Mycoplasma is an interesting organism because it produces a range of atypical immune reactions. It can produce Reiter's but also the antibody mediated cold-agglutinin phenomenon.
  16. Jonathan Edwards

    How should we measure the “POT” of POTS, and how much does it matter?, 2023, Boris and Fischer

    That is an interesting history. I have in my study the small wooden cabinet constructed by John Honor, who was chief technical officer to Thomas Lewis, with drawers labelled 'histamine', 'cannulae', syringes' etc. What I think may be significant is that this group of Civil War soldiers had...
  17. Jonathan Edwards

    Participatory design of bodysymptoms.org: An interactive web resource to explain multisystem functional somatic symptoms 2024 Saunders, Burton et al

    A typical example of how 'lived experience' and 'empowered' are manipulated to justify poor work. And the usual 'multidisciplinary' garbage.
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