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  1. Jonathan Edwards

    Postural orthostatic tachycardia syndrome and other common autonomic disorders are not functional neurologic disorders, 2024, Blitshteyn

    I worry that this fuels the idea that 'exercises are fine for those other 'functional' people as long as they aren't used for our patients'. There is no evidence that exercises should be recommended for anyone, I suspect.
  2. Jonathan Edwards

    Decoding the Genetic Basis of Mast Cell Hypersensitivity and Infection Risk in Hypermobile Ehlers-Danlos Syndrome, 2024, Purusha Shirvani

    Chris Ponting might feel a bit miffed that these people got an answer with 18 patients instead of 18,000.
  3. Jonathan Edwards

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    A dose of the bends maybe? He might even have been talking to Jessica Eccles https://x.com/BendyBrain .
  4. Jonathan Edwards

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

    One interesting possibility is that the causation is the other way around. Maybe in LC there is persistent endothelial activation because of some after effect of the spike protein interaction with ACE-R. Maybe that makes people feel generally fatigued. And secondarily there is a reactive shift...
  5. Jonathan Edwards

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

    Maybe just to put this in perspective. Covid has been with us for five years now. We have seen about six papers on indirect evidence for thrombotic phenomena in LC. There are 1,450 papers on thrombotic phenomena with Covid vaccines, where clinical evidence is now well recognised.
  6. Jonathan Edwards

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

    Absolutely. This is the diplodocus in the room! Radiolabelling and injecting processed particles might be problematic and otherwise we don't seem to know what to radiolabel, but I think it is simpler than that. If these clots were causing vascular changes they would be clinically apparent. They...
  7. Jonathan Edwards

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

    So we are now really talking about non-covalent chemical interaction in solution. Biological chemistry gets complicated at these intermediate scales but an electrostatic effect without a 'lump' effect really boils down to a non covalent chemical effect. That is what fibrinogen and immunoglobulin...
  8. Jonathan Edwards

    Analysis of thrombogenicity under flow reveals new insights into the prothrombotic state of patients with post-COVID syndrome, 2022

    I had forgotten about this study published two years ago. It is from my own medical unit (haematology division) at UCLH. The method is meaningful as a way to assess a prothrombotic tendency and they appear to have found a biologically significant difference. However, I agree with the...
  9. Jonathan Edwards

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

    Seeing particles in blood in living people is not easy, although you can see red cells moving in retinal vessels with the right equipment I think. (You can see them in yourself with a clever trick with a light shining on to your eyeball from the side while you wiggle it.) But a reasonable ask...
  10. Jonathan Edwards

    Two-Day Cardiopulmonary Exercise Testing in Long COVID Post-Exertional Malaise Diagnosis, 2024, Gattoni

    I think 15 is enough to show a difference of clinical importance. At least it looks as if it is perfectly possible to have PEM as a symptom without finding a major dip at day 2. That doesn't worry me particularly. I think the link between the two would have to be indirect anyway.
  11. Jonathan Edwards

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    I agree with Hutan that it would be nice to think that but the other speakers were generally not very convincing medically. The BPS approach is not going to be rebutted by shaky science. Winning the argument in the public eye is all very well but if the medical profession is unconvinced things...
  12. Jonathan Edwards

    The Concept of ME/CFS

    I have sent it in for publishing. People are welcome to comment on Qeios as 'peer review' but I am not intending to modify the text further unless there is a reason to make a major content change.
  13. Jonathan Edwards

    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    It is of interest but I will be in Peru and I suspect I am not invited anyway. It is interesting to see the range of people involved including Helen Baxter and Sue Luscombe, together with AG from UCLH and also MS from the homeopathic hospital. She seems to be in to Yoga (for those who haven't...
  14. Jonathan Edwards

    Rituximab Is Ineffective for Treatment of Fatigue in Primary Biliary Cholangitis: A Phase 2 Randomized Controlled Trial 2019 Khanna et al

    This trial was getting going in 2014. I never caught up with the publication. But at the time I thought Newton's argument that if rituximab worked for fatigue in one illness it ought to work in others was weak. Primary biliary cirrhosis is obviously antibody mediated. So its manifestations...
  15. Jonathan Edwards

    CoRE: Long Covid, Lyme and related conditions clinic at Mt Sinai hospital

    'Improving signs of T cell exhaustion' sounds an awful lot like a wing and a prayer to me.
  16. Jonathan Edwards

    CoRE: Long Covid, Lyme and related conditions clinic at Mt Sinai hospital

    Does anyone know whether there is any serious scientific hypothesis behind this? My limited knowledge of rapamycin is that it suppresses immune responses. I do not see the logic of choosing a single low dose. A dose ranging study might make sense but giving a low dose of an immune modulating...
  17. Jonathan Edwards

    Alcohol Intolerance poll. Please do the poll even if your answer is no.

    Can I ask what you are meaning by MCAS, @Arisoned ? My understanding is that MCAS is supposed to be a term for presumed mast cell activation that is not allergen related - i.e. not standard allergy. I am also unclear as to quite what symptoms it is supposed to have. I think allergy to alcohol...
  18. Jonathan Edwards

    The Concept of ME/CFS

    symptoms I realise that it is a bit vague but it is the difficulty of defining or predicting the time course that I see as important.
  19. Jonathan Edwards

    Alcohol Intolerance poll. Please do the poll even if your answer is no.

    Thanks Andy. The majority said yes. I will be interested to see how many for each sort of reason. The general discussion seems to have stopped 5 years ago but clearly worth a re-read. Edit: yes, well worth a read, lots of information, but it would be nice to have an option poll to clarify...
  20. Jonathan Edwards

    Alcohol Intolerance poll. Please do the poll even if your answer is no.

    That isn't a satisfactory answer Sasha. Or maybe I should put in another alternative: I've been avoiding alcohol for so long now that I can't remember the symptoms that led me to avoid it.
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