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  1. Jonathan Edwards

    The growing crisis of long sepsis (Daily Mail)

    I think there is a risk of oversimplifying the situation, as has been clear for post Covid illness. ME/CFS type illness may well occur after sepsis but I suspect that most people who cannot work after sepsis, like a small but not insignificant number after hospitalisation for Covid, have major...
  2. Jonathan Edwards

    USA: News from the Bateman Horne Center

    As far as I am aware none of the information on that sheet is based on evidence and is likely to get patients involved in unnecessary rigmaroles and potentially dangerous overuse of salt.
  3. Jonathan Edwards

    The growing crisis of long sepsis (Daily Mail)

    Except that people with Long Covid don't get 'the help they need' because there isn't any beyond advice on not trying to push through. The 100 clinics are presumably sending people off for GET and CBT - the post-sepsis patients are probably lucky!
  4. Jonathan Edwards

    The Born Free Protocol

    How about the Ninja Turtle Protocol On the basis that Americans call tortoises turtles and the tortoise won the race by taking things steadily.
  5. Jonathan Edwards

    Avoiding the use of long-term parenteral support in patients without intestinal failure: A position paper from the... 2024 Lal et al

    Interesting to see that these people are arguing in public the case that I was arguing against in my recent piece in Qeios. And they make exactly the mistake I was criticising - basing policy on theory rather than evidence of keeping people alive. They obviously have no understanding either of...
  6. Jonathan Edwards

    The Born Free Protocol

    This reminds me why we are no longer members of another place that until recently we were not supposed to mention, and I still won't mention (by name). How we came to be not members.
  7. Jonathan Edwards

    Electroconvulsive Therapy

    Memory loss is a well established problem with ECT and informed consent includes explaining that. My wife lost a lot of memory to begin with but almost all of it has returned. Moreover, for things that were disappointing to have forgotten, prompts have brought them back. The argument posed in...
  8. Jonathan Edwards

    Speculations about the genetics of ME/CFS and DecodeME

    The very best thing would be that DecodeME would find a link to some very obscure but crucial control protein - let us say TWEAK (it exists). Suddenly we would realise that ME/CFS might be mediated by short range interaction between TWEAK and gamma-interferon sensitising nerve endings. The task...
  9. Jonathan Edwards

    MENSA, a Media Enriched with Newly Synthesized Antibodies, to Identify SARS-CoV-2 Persistence ... Viral Reactivation in Long-COVID, 2024, Haddad+

    This for me is a key concern. I have had Covid 4 or 5 times based on my own lateral flow tests and those of my daughter who usually gives us the Covid from her school. My 'Long Covid' has been a series of phases each triggered by a new infection. I think there is a very big question mark over LC...
  10. Jonathan Edwards

    MENSA, a Media Enriched with Newly Synthesized Antibodies, to Identify SARS-CoV-2 Persistence ... Viral Reactivation in Long-COVID, 2024, Haddad+

    I think that is a reasonable assumption. The problem is that the cells picked up may not be representative of the current response. Moreover, the test requires each antibody species, from a separate cell, to be given a yes/no attribution of 'anti x-virus' or 'anti-y virus' and antibody...
  11. Jonathan Edwards

    MENSA, a Media Enriched with Newly Synthesized Antibodies, to Identify SARS-CoV-2 Persistence ... Viral Reactivation in Long-COVID, 2024, Haddad+

    Not sure how the conclusions about herpes simplex are arrived at! The story as told looks unconvincing and over interpreted but it might be that they are showing that PASC is associated with a different and broad anamnestic antibody response. That would fit with an idea Jo Cambridge and I were...
  12. Jonathan Edwards

    Electroconvulsive Therapy

    The article looks fairly poorly researched. A colloid cyst is not a tumour. If it was capable of causing severe depression it was probably capable of causing severe memory loss - as might the surgery have been. 300 ECT sessions is a huge number so it isn't representative of the usual situation...
  13. Jonathan Edwards

    UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

    I note that Darren Jones has been appointed as Chief Secretary to the Treasury. I met him at one point in the House of Commons in relation to his interest in ME/CFS and being on the science and technology committee. He has asked questions about ME/CFS research in the Commons
  14. Jonathan Edwards

    How to best move the understanding of ME/CFS forward (and the forum's role in that)

    Probably more of sterile pneumonitis. I am not sue this has ever been adequately sorted out. Cell depleting monoclonals can produce serious acute events.
  15. Jonathan Edwards

    CAR-T therapy

    Which B cell experts? Maybe Andreas Radbruch I guess. Without an antibody to measure the only real issue is with re-treatment time. I suspect an initial trial will have to stick with a six month endpoint from a single infusion.
  16. Jonathan Edwards

    CAR-T therapy

    If virus persistence is contributing to Long Covid B cell depletion would seem risky. There were almost certainly excess deaths in patients on rituximab during the Covid epidemic and of course new variants are still making people ill and causing a few deaths.
  17. Jonathan Edwards

    Circulating Microclots Are Structurally Associated With Neutrophil Extracellular Traps and Their Amounts Are Elevated in [LC] Patients, 2025, Thierry+

    I am rather unimpressed by this new fashion for talkings of 'NETs'. As far as I can see this is fibrinoid, which we all learnt about as students in 1970and which had been known about since the nineteenth century. Neutrophil debris combines with fibrin in (extravascular) tissue areas of...
  18. Jonathan Edwards

    The effect of expectancy versus actual gluten intake on gastrointestinal and extra-intestinal symptoms in non-coeliac gluten..., 2024, De Graaf et al.

    Maybe people with non-coeliac gluten sensitivity live like that though? Some doing gluten free and some gluten restricted. As long as they were randomly assigned it wouldn't really affect controlling of the intervention.
  19. Jonathan Edwards

    The effect of expectancy versus actual gluten intake on gastrointestinal and extra-intestinal symptoms in non-coeliac gluten..., 2024, De Graaf et al.

    I wonder what the patient information sheet said and whether it was ethical. If the 'expectation part' of the study was 'masked' from the patients it sounds as if the information sheet said that they would be told whether or not to expect gluten - but not told that the information would be...
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