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  1. Jonathan Edwards

    #NotJustFatigue - next event livestream 25 Sep 2025

    Not really. MRI is a highly sensitive indicator of brain inflammation. There isn't any. Inflammation in brain is not hard to pick up. The brain tolerates only slight inflammation poorly. The term ME was coined, not because of what we now call ME but because of neurological signs found in an...
  2. Jonathan Edwards

    Graded exercise therapy compared to activity management for paediatric [CFS/ME]: pragmatic randomized controlled trial, 2024, Gaunt, Crawley et al.

    Must they? New Clinical Guidelines favour activity management, not GET. Trial shows activity management as good as GET. Spot on. Jobs for the girls continue.
  3. Jonathan Edwards

    Fatigue after CriTical illness (FACT): Co-production of a self-management intervention to support people w/fatigue after critical illness 2024 Brown+

    ~We had that in the 1980s. She was called an occupational therapist. `Why does an OT have to become a FACT? We don't want any sort of theory. We want practical advice based on evidence. Not much evidence of evidence here. Useful bits of evidence are things like if you get handrails fitted the...
  4. Jonathan Edwards

    Graded exercise therapy compared to activity management for paediatric [CFS/ME]: pragmatic randomized controlled trial, 2024, Gaunt, Crawley et al.

    Maybe it just shows the expected - when you compare two therapy programmes the results always look the same, because they don't reflect any particular therapy.
  5. Jonathan Edwards

    #NotJustFatigue - next event livestream 25 Sep 2025

    Indeed, even I found it a bit like a punch in the face.
  6. Jonathan Edwards

    #NotJustFatigue - next event livestream 25 Sep 2025

    Yes but it then goes on to say that chronic fatigue syndrome is misleading without pointing out that ME is even more misleading since it describes something that does not occur - brain inflammation. I am pretty sure people recently told they have ME will get a very distorted view from this -...
  7. Jonathan Edwards

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    Hmm. If you have train as a doctor you get used to the haunting at night from personal mistakes - or quit. I still wake thinking of some from 40 years ago. I am not sure I would wake up realising I had stupidly approved a badly designed trial with uninterpretable results.
  8. Jonathan Edwards

    Graded exercise therapy compared to activity management for paediatric [CFS/ME]: pragmatic randomized controlled trial, 2024, Gaunt, Crawley et al.

    That is pretty strong evidence. The chances that the difference is purely due to chance is one in fourteen. So the chance that it is real is thirteen fourteenths. That isn't good enough to be sure of a beneficial result but it is perfectly good enough to conclude that GET most likely makes...
  9. Jonathan Edwards

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    The situation the UK may now be similar on these points. But I doubt hospital and university ethics committees get paid. It isn't part of the job but having done a stint helps to get bonus pay. But even if they are paid I am not clear how they can be realistically accountable. If five years...
  10. Jonathan Edwards

    #NotJustFatigue - next event livestream 25 Sep 2025

    If I had been diagnosed with ME I would probably be terrified by the misinformation on this website. I find this persistent hyping tedious and disappointing to be honest. ME may mean muscle pain and brain inflammation but that is not what the illness is. It would help to point that out. And so...
  11. Jonathan Edwards

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    It does, except that members of an ethics committee are not held responsible through any mechanism. Ethics committees were set up on the basis that they were a good idea. They became compulsory but I don't think members have ever had to commit themselves to behaving ethically themselves, or...
  12. Jonathan Edwards

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    A good ethics committee ensures this function. A trial that will not produce reliable evidence is unethical, by and large. Unfortunately, ethics committees are a mixed bag.
  13. Jonathan Edwards

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    I actually think it IS dimness. People can trot out arguments like a parrot and never see how they will apply in another context. Apart from anything it is dim to write an argument in an email to someone who clearly knows that the argument is garbage!
  14. Jonathan Edwards

    NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence, 2024, Barry et al.

    Their institutions probably did one way or another. It is standard now. Almost everyone senior in a field is on the editorial board of lots of journals. I forget how many editorial boards I was on. It isn't a big deal. You even get key papers rejected.
  15. Jonathan Edwards

    Unique pathways downstream of TLR-4 and TLR-7 activation: sex-dependent behavioural, cytokine, and metabolic consequences 2024 Dunstan et al

    I guess the usual way - look for the signal in the disease and see what inhibitors do. There may be TLR-7 inhibitors already. Whether you need to do animal studies first would depend on the detailed logistics I think.
  16. Jonathan Edwards

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    Actually, NICE use GRADE and GRADE is garbage. There is no gold standard other than careful reasoning, when the chips are down. The difficulty is that dim people often find it hard to follow careful reasoning. Peter Barry has done a brilliant job of showing that all the complaints are spurious...
  17. Jonathan Edwards

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    It is recognised by a group of people who like these catch-all predigested terms. As an immunologist I never used it or even came across it. I only met it in the context of ME debate. Terms like 'illness behaviour' are generally best avoided. They package up the immune response in ways that...
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