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  1. Jonathan Edwards

    Online workshop: Treating Long Covid, 24th and 25th April

    I don't even think that Long Covid is a useful medical term. People who have had Covid have a variety of different continuing problems, which may coexist. Those problems need to be assessed by a physician if they are concerning. That is all as far as I can see. To me it is more a question of...
  2. Jonathan Edwards

    Online workshop: Treating Long Covid, 24th and 25th April

    Are you sure this is costochondritis? My special interest as an academic rheumatologist was in connective tissue pathology and I am doubtful that there is such a thing. Cartilage has no blood supply so there isn't really such a thing as chondritis, only perichonritis and I have never seen any...
  3. Jonathan Edwards

    Online workshop: Treating Long Covid, 24th and 25th April

    I find this quite worrying. It seems that if someone has an abnormal breathing pattern physios can just invent an explanation and 'treat' it off the top their heads based on whatever pseudo physiology they like. People with LongCovid may have an unusual gas transfer problem that impedes oxygen...
  4. Jonathan Edwards

    News from Aotearoa/New Zealand and the Pacific Islands

    I don't understand the physiology of Covid hypoxia but if it is true that it is often not recognised by the patient (or prime minister) then maybe hypocapnia is the needed drive to ensure oxygen levels do not sink further. I think if you are going to introduce a treatment designed to stop people...
  5. Jonathan Edwards

    Skewing of the B cell receptor repertoire in myalgic encephalomyelitis/chronic fatigue syndrome, 2021, Sato et al

    Each antibody is made from several genes cobbled together - a bit like taking a cone and then adding two different flavour scoops of ice-cream from a wide selection. The cone is the constant bit that gets the tag C. The flavours are variable so get the tag V. In fact the cone is made up of a...
  6. Jonathan Edwards

    Antivirals as ME/CFS or Long Covid treatments (e.g. valacyclovir, valgancyclovir, amantadine)

    Didn't see this question, sorry. This is just phoney advertising, not responsible medical care. I don't know the exact profile of safety with these drugs but in the past things like this have been associated with serious adverse effects. Maybe not often but not rare.
  7. Jonathan Edwards

    Skewing of the B cell receptor repertoire in myalgic encephalomyelitis/chronic fatigue syndrome, 2021, Sato et al

    Yes, I think this is one to take seriously even if it gives me a headache. Even if there is a real prominence of IGHV30 I think the connection from there to any understanding of what might be going on is murky in the extreme. The most obvious idea is that it points to a particular inciting...
  8. Jonathan Edwards

    Skewing of the B cell receptor repertoire in myalgic encephalomyelitis/chronic fatigue syndrome, 2021, Sato et al

    Huh, I just got an email from Jo C which says: I reviewed it...got them to do major revision and now ok actually. I have been asked to write a commentary on it by the editor... So we will see. She does not seem to be leaping out of her chair just yet!
  9. Jonathan Edwards

    Skewing of the B cell receptor repertoire in myalgic encephalomyelitis/chronic fatigue syndrome, 2021, Sato et al

    Do we actually get to see the results? I may be old fashioned but this sort of paper looks to me like presenting masses of information using obscure statistical methods to distract from the fact that nothing much was found. I can only see one set of IGHV expression levels in figure 1. The...
  10. Jonathan Edwards

    Who is Simon Wessely?

    What must it be like to be famous for giving up because people thought you were no good at your job while being unable, yourself, to see, as is now demonstrated, that they were right? (The problem being not understanding the psychology of ordinary people.)
  11. Jonathan Edwards

    CBT and CFT for Chronic Pain, 2021, Hadley and Novitch

    But why should physiotherapy or exercise be of any value either? I don't get that.
  12. Jonathan Edwards

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    To me this is an indication of just how useless it is to collect statistics if you do not understand the realities of clinical medicine. It says: Over the four-week period ending 6 March 2021, an estimated 1.1 million people in private households in the UK reported experiencing long COVID. No...
  13. Jonathan Edwards

    Covid-19 vaccination experiences

    I am afraid I strongly suspect that is designed to reassure for political reasons. The default assumption in the absence of evidence (as you point out) is that any procoagulant state like taking the pill or having Factor V Leiden or anti-phospholipid syndrome would be likely to increase risk for...
  14. Jonathan Edwards

    Covid-19 vaccination experiences

    I think we had Pfizer because we travelled 100 miles in to London to get it at St Bart's. I suspect Pfizer is mostly available at big centres where they have the facilities to decant batches from the -80º freezer. We got on to their list because a family member is under Bart's for follow-up and...
  15. Jonathan Edwards

    BPS attempts at psychologizing Long Covid

    But this is very much the BPS façade. We take everything seriously and of course do not dismiss anything as psychological because mind and brain work together in complicated ways and we have learned to be nice to people (even if a bit late in one case).
  16. Jonathan Edwards

    Open Medicine Foundation (OMF)

    I am not quite sure what is being suggested b ut surely if you need to genetically modify to induce the trap it won't be the same trap as PWME are hypothesised to have since they are not genetically engineered. Animal models of causation of disease are almost always by definition...
  17. Jonathan Edwards

    Mast Cell Activation Syndrome (MCAS) - discussion thread

    But lactose is something different again - not milk protein as in the Rowe study. We need some proper biology here.
  18. Jonathan Edwards

    Mast Cell Activation Syndrome (MCAS) - discussion thread

    Milk doesn't contain gluten. The study by Rowe is about milk protein but it looks to be extremely badly done. It is difficult to know how accurate the report is but apparently there is no test for milk protein intolerance so it was just diagnosed on hunch. People diagnosed on hunch were better...
  19. Jonathan Edwards

    Covid-19 vaccination experiences

    I should not give anyone personal advice but my thought would be that anti-phospholipid syndrome should be a definite indication for using one of the other vaccines, since they are available. I have just had Pfizer and they seem short of takers if anything.
  20. Jonathan Edwards

    BPS attempts at psychologizing Long Covid

    He looks to be have as many BPS veins as the blue in a Stilton cheese. The difference from the other guy may be that he has learnt that patients are not quite so dumb as to be told they are imagining everything. He finds it works better to say they may only be imaging some of it - classic BPS...
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