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  1. Jonathan Edwards

    Can we influence trial and review methodology, eg open-label trials with subjective primary outcomes?

    I have come to think that physicians have always been witch-doctors at heart, over history. In the immediate post-war years of 1950-80 scientists became leaders within practical medicine, whereas a generation before the scientists with medical degrees mostly went into science. The payoff came...
  2. Jonathan Edwards

    Deep Sequencing of BCR Heavy Chain Repertoires in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2025, Ryback et al

    Yes, it is certainly intriguing. And paradoxical effects might make a lot of sense if we are dealing with VH gene usage that functions normally as a sort of 'decoy'. Jo C and I had speculated about various predictions in the context of VH4-34 but it begins to look as if they might be relevant -...
  3. Jonathan Edwards

    Open Study to Evaluate the Efficacy and Safety of Plitidepsin in Adults with Post-COVID-19 Condition (PCC) (THALASSA)

    This seems to be an obscure cell poison derived from sea-squirts. It might be useful in cancer. Not sure I would want to try it for Long Covid.
  4. Jonathan Edwards

    Rapamune / Rapamycin/ mTOR

    Actually this is quite clever way to do a valid control. You take a population and treat with X. You find those with highY all get better but those with lowY do not. That implies that getting better was due to X in the presence of a context marked by highY. The lowY's act like a placebo group...
  5. Jonathan Edwards

    NHS England - E-learning Modules on ME/CFS

    Sorry, David, but this makes no sense at all. Surely we can do better than this. What about the problem that nearly all the services that are provided are incompetent or worse.
  6. Jonathan Edwards

    One of UK's most commonly prescribed drugs (Levothyroxine)is linked to Osteoporosis

    Everything is completely different over there. Medicine is a money-making business, full stop. Private physicians in the UK used to do the same but I suspect less keen on the litigation these days.
  7. Jonathan Edwards

    One of UK's most commonly prescribed drugs (Levothyroxine)is linked to Osteoporosis

    The text implies that they are. I am pretty sure that in the USA older people quite often get given a 'little bit of thyroxine' to pep them up on the grounds that even if the TSH is normal they might benefit. It is not so different from the European practice of giving a bit more than the TSH...
  8. Jonathan Edwards

    Deep Sequencing of BCR Heavy Chain Repertoires in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2025, Ryback et al

    I know relatively little about RNA technology but amounts of RNA would not necessarily have anything to do with the clonal commitment to a particular VH gene rearrangement would they? A plasmablast in blood might presumably have a hundred times more RNA for that recombined Ig gene than a...
  9. Jonathan Edwards

    Small fiber neuropathy in the post-COVID condition and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome…, 2025, Azcue+

    All a bit odd. In fibromyalgia people are supposed to be oversensitive to things like heat and pain.
  10. Jonathan Edwards

    One of UK's most commonly prescribed drugs (Levothyroxine)is linked to Osteoporosis

    This seem pretty irresponsible reporting. Thyroxine will lower bone density. We have known that for forty years. (I assume T3 will as well.) If you take more thyroid hormone than you need then your bone density is likely to be lower than it needs be. If you are hypothyroid you need to have...
  11. Jonathan Edwards

    CFS/ME an ideal facade for Munchausen syndrome by proxy?—“It can be so exhausting just to relax …”, 2025, Melfsen & Lucas (German)

    "Many questions remain unanswered in this case. One of them concerns the validity of the diagnosis CFS/ME: Given its currently low validity, does it lead to its use as mimicry in the context of artificial disorders?" This seem very confused. In what sense is there 'currently low validity' I...
  12. Jonathan Edwards

    CFS/ME an ideal facade for Munchausen syndrome by proxy?—“It can be so exhausting just to relax …”, 2025, Melfsen & Lucas (German)

    I would forget their opinions and attitudes and focus on the story. It is a story very similar to that given by members here who are confident in their own ME/CFS diagnosis.
  13. Jonathan Edwards

    Can small fiber neuropathy present like ME/CFS?

    Certain causes of neuropathy are quite well understood, yes. Although generally not small fibre specific. B12 goes for dorsal columns. Diabetes hits all nerve types I think. Vincristine neuropathy has a specific pattern etc. The small fibre neuropathy said to be associated with fibromyalgia or...
  14. Jonathan Edwards

    CFS/ME an ideal facade for Munchausen syndrome by proxy?—“It can be so exhausting just to relax …”, 2025, Melfsen & Lucas (German)

    No. At least in the UK I'm pretty sure that obtaining consent from a ten year old in this context is not legally valid. I think there are very real concerns about that. Even with a pseudonym cases like this may be recognisable by schoolfriends' families and others later in life.
  15. Jonathan Edwards

    CFS/ME an ideal facade for Munchausen syndrome by proxy?—“It can be so exhausting just to relax …”, 2025, Melfsen & Lucas (German)

    I am not assuming any diagnosis here, or even that we think we have the diagnostic categories right. I am simply saying that from the little information we are given ME/CFS looks the most usual problem to present like this. And I don't see on what grounds the authors say it is wrong - there...
  16. Jonathan Edwards

    CFS/ME an ideal facade for Munchausen syndrome by proxy?—“It can be so exhausting just to relax …”, 2025, Melfsen & Lucas (German)

    There is nothing we know about ME/CFS that says not. Children do recover. How fast that can be I don't know but 6 months does not seem that quick. And we aren't really in a position to say what is possible since we don't understand ME/CFS at all. That would not be so unusual for a mother and...
  17. Jonathan Edwards

    CFS/ME an ideal facade for Munchausen syndrome by proxy?—“It can be so exhausting just to relax …”, 2025, Melfsen & Lucas (German)

    I think it is unlikely that a child would become withdrawn, underweight and sensitive to stimuli from eating too many supplements. It sounds from the story that very likely 'Mara' had ME/CFS. The authors claim that she did not fit the diagnosis but they describe her as if she has it. If she...
  18. Jonathan Edwards

    CFS/ME an ideal facade for Munchausen syndrome by proxy?—“It can be so exhausting just to relax …”, 2025, Melfsen & Lucas (German)

    I have so far just looked at the abstract but my thought is that this cannot be Munchausen by proxy - at least as defined by Wikipedia. MBP involves a parent manipulating evidence or depriving a child care to make a healthy child appear sick. It seems that the child here was sick.
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