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  1. Jonathan Edwards

    Ehlers–Danlos syndromes, hypermobility spectrum disorders, and associated co-morbidities: Reports from EDS ECHO, 2021, Hakim et al.

    Alan Hakim was one of our trainees and took over the hypermobility story from Rodney Graham. He is probably now the main person in the UK pushing the make-believe about 'hEDS' or 'HSD'. The excerpts are typical. I think this is doing a huge amount of harm, particularly for children and...
  2. Jonathan Edwards

    USA Event: The 2023 PLMI 11th Annual Thought Leaders Consortium: Next Generation Clinical Management of Chronic Neuroimmune Disorders Oct 20 2023

    It looks like pure quackery. Anything that bills itself as a thought leaders consortium has to be a bunch of charlatans.
  3. Jonathan Edwards

    POTS/Exercise intolerance treated with Humira

    This should never have been let through peer review like this. All it shows is that if you have bad enough ankylosing spondylitis to justify Humira - i.e. you have constant pain, fatigue and inability to sleep comfortably - then if you also have postural tachycardia it may be improved if you get...
  4. Jonathan Edwards

    The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS

    Microclotting occurs in subacute bacterial endocarditis. It may occur in other infections but nothing obvious comes to mind immediately. Remember that what has been reported by Pretorius et al is clotting in a tube rather than clotting in a patient. Clotting occurs in acute severe Covid19 but I...
  5. Jonathan Edwards

    Lightning Process - discussion thread

    I think Edzard is dead wrong here: Sure, the LP is dangerous nonsense, but this begs the question of whether so-called alternative medicine (SCAM) has anything to offer for patients suffering from ME/CFS. If the LP story tells us anything, then it must be this: we should not trust single...
  6. Jonathan Edwards

    The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS

    Indeed, where is the Budd-Chiari liver enlargement or the ventilation perfusion mismatch or reduced GFR?
  7. Jonathan Edwards

    The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS

    The idea that it might take that long is conceivable. I just cannot at the moment conceive of any mechanism that is likely to apply. One of the key aspects of credibility of anecdotal evidence from cases or pilot studies is seeing the therapeutic dynamic follow an expected path. Like a dose...
  8. Jonathan Edwards

    The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS

    Interesting point. There is still a query as to why pathology subtle enough not to be visible in terms of physical signs or standard tests would take months to resolve on anticoagulation. Again, I would rather expect rapid improvement at least over a couple of weeks. Resolution of neurological...
  9. Jonathan Edwards

    The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS

    That would be very peculiar. If the treatment was some form of removal of clotting factors or clots then you would expect to see improvement immediately that would probably wear off after hours or days. I am not aware of any reason why it should lead to improvement gradually over months.
  10. Jonathan Edwards

    Endometriosis and ME/CFS

    I don't think any of these studies is going to give a useful answer because of ascertainment biases. To be of any use you really need a population-based cohort that has been assessed by as objective criteria as possible in a context in which, at the time, nobody knew that the question was...
  11. Jonathan Edwards

    United Kingdom: Invest in ME news

    A treatment that has been going for 1,700 years and still has no reliable evidence. Mmm. (Except perhaps for a disease due to modern antibiotics killing your own poo.)
  12. Jonathan Edwards

    The Effectiveness of Psychological Interventions for Rheumatoid Arthritis (RA): A Systematic Review and Meta-Analysis 2023 Nagy et al

    It seems a bit like concluding that pills, on average, are useful for rheumatoid arthritis. It would be nice to know which pill there was actually any decent evidence for.
  13. Jonathan Edwards

    Recruiting: A Study of a Positive Emotion Intervention for the Treatment of Long COVID-19 Symptoms, University of California, Lopez

    I have a new therapy. 1. Browse the Guardian online for two minutes to see what a shit world is going on around us. 2. Settle in to S4ME to see that there are still some sane and lovely people in the same world.
  14. Jonathan Edwards

    Recruiting: A Study of a Positive Emotion Intervention for the Treatment of Long COVID-19 Symptoms, University of California, Lopez

    The researcher is listed as Javier E Lopez Title(s) Associate Professor, Internal Medicine School School of Medicine But the enquiries name is Michael Amster, who is a mindfulness therapist into Buddha and stuff. Maybe he had to use Lopez's name for administrative reasons?
  15. Jonathan Edwards

    Recruiting: A Study of a Positive Emotion Intervention for the Treatment of Long COVID-19 Symptoms, University of California, Lopez

    Sorry the twelfth mistake screws up the Bonferroni correction so I can only offer (virtual) rich tea biscuits.
  16. Jonathan Edwards

    Recruiting: A Study of a Positive Emotion Intervention for the Treatment of Long COVID-19 Symptoms, University of California, Lopez

    But maybe the micro-dosing potentiated the power. You might end up blowing your mind by self-dosing just one teeny time.
  17. Jonathan Edwards

    Recruiting: A Study of a Positive Emotion Intervention for the Treatment of Long COVID-19 Symptoms, University of California, Lopez

    Now girls and boys, who can spot the eleven mistakes in this protocol? Jaffa cakes will be distributed to all those providing the correct answers by Thursday (or at least virtual Jaffa cakes). I love the micro-dosing, as would Samuel Hahnemann stroking his harp in heaven.
  18. Jonathan Edwards

    Is severe tiredness 'chronic fatigue' or something else? : Story by Dr Martin Scurr

    And being old is a ten times commoner cause of widespread pain, I can assure him. There is now only one position I can lie in at night for more than ten minutes.
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