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  1. Jonathan Edwards

    Invisible Illness A History, from Hysteria to Long Covid, 2026, Mendenhall (book)

    And rightly so. Psychopathological in fact.
  2. Jonathan Edwards

    Interventions that manipulate how patients report symptoms as a separate form of bias

    But how Mr Bandura wanted to mean it is not the issue. It is how it is used. The creators of CBT may have this belief but the poster is right. CBT is designed to bias. Peter White of the PACE trial actually wrote this in a paper with Hans Knoop - that CBT works as a placebo. If the people who...
  3. Jonathan Edwards

    Utility of Glucagon-Like-Peptide-1-Receptor Agonists in Mast Cell Activation Syndrome, 2025, Lawrence B. Afrin M.D, Blitsheyn et al

    It is intended to reflect the total absurdity of Afrin's claims about 'MCAS'. It is not that the situation is funny, it is pitiful.
  4. Jonathan Edwards

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

    I know Oystein and Olav well. I have sat talking with them for hours. They are very honest and humble folk and I think would agree that they cannot possibly know how many diseases their patients fall under. What I am sure of is that they would not fiddle data. But they cannot know if there are...
  5. Jonathan Edwards

    Invisible Illness A History, from Hysteria to Long Covid, 2026, Mendenhall (book)

    My guess is that a breach of confidence is only a legal matter if there is a contract in place - either explicit or established by a signed agreement to abide by a set of conditions - or if there is a statutory obligation as for doctors or institutions handling personal data (I had to pass a...
  6. Jonathan Edwards

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

    One would hope so but who knows whether the criteria we use differentiate? Haemophilia turned out to be two almost identical diseases. ME/CFS is a bit different but not because it is easier to pin down!
  7. Jonathan Edwards

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Yes, although it has obviously been a long haul for you, it does seem that one should never give up because the end result might just be a bit more sensible than what might seem the inevitable. There may be time to steer things in the right direction and people who seem to be pulling in the...
  8. Jonathan Edwards

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

    The trouble is that although your intuition may be right that a person with the disease that most members here probably have may well be unlikely to triple a step count for months, we cannot discount the possibility that some people with a diagnosis of ME/CFS have other diseases that may be...
  9. Jonathan Edwards

    Utility of Glucagon-Like-Peptide-1-Receptor Agonists in Mast Cell Activation Syndrome, 2025, Lawrence B. Afrin M.D, Blitsheyn et al

    Especially when it is supposed, by Afrin, to be the cause of people spontaneously catching fire, even if that doesn't happen very often.
  10. Jonathan Edwards

    Daratumumab in systemic lupus erythematosus: a single-arm phase 2 trial, 2026, Ostendorf et al

    Sure, we are both tempted to bet on that horse, even if it is listed at 50:1.
  11. Jonathan Edwards

    Daratumumab in systemic lupus erythematosus: a single-arm phase 2 trial, 2026, Ostendorf et al

    Do Americans not eat marmalade? Oh dear, they got it from Safeway?
  12. Jonathan Edwards

    Daratumumab in systemic lupus erythematosus: a single-arm phase 2 trial, 2026, Ostendorf et al

    I was asking people if we could do it for RA and lupus in 2000 but everyone said that anti-CD38 would be too dangerous. As with the other agents, it took oncologists faced with people with no chance of survival otherwise, to try these things out. And in fact it isn't a particularly clever thing...
  13. Jonathan Edwards

    Daratumumab in systemic lupus erythematosus: a single-arm phase 2 trial, 2026, Ostendorf et al

    So sad. Home-made marmalade is one of the great experiences in life. Even the Queen used to carry a marmalade sandwich in her handbag (she said so on telly).
  14. Jonathan Edwards

    Daratumumab in systemic lupus erythematosus: a single-arm phase 2 trial, 2026, Ostendorf et al

    I agree, but since we are pretty sure that the pathology in lupus is mediated by antibody it is stretching things a bit to suggest that blocking interferon, which might have reduced the production of antibody from the cells you have already killed (if you hadn't killed them) matters much. It is...
  15. Jonathan Edwards

    Daratumumab in systemic lupus erythematosus: a single-arm phase 2 trial, 2026, Ostendorf et al

    I always thought that people in the USA spoke this language too? Maybe you buy your marmalade from shops though.
  16. Jonathan Edwards

    Ozempic, tirzepatide and other GLP-1RAs - impact on ME/CFS

    Interesting that Afrin seems to assume that MCAS is based on genetic mutations - just so many different ones nobody knows what they are. I think that makes it more relevant that DecodeME didn't seem to pull out a single one.
  17. Jonathan Edwards

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Which position are you thinking of? Sonya very much agreed with my reservations about what looks to be emerging from the DHSC plan.
  18. Jonathan Edwards

    Daratumumab in systemic lupus erythematosus: a single-arm phase 2 trial, 2026, Ostendorf et al

    A bit like highlighting the importance of oranges in making marmalade?
  19. Jonathan Edwards

    Scottish ME/CFS clinical service provision

    Dr Janet Scott, consultant physician on the health board's Covid recovery service, said a team of medical professionals would discuss a patient's individual needs and provide a treatment plan. Presumably 'medical professionals' means 'not actually doctors'. An individualised treatment plan?
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