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  1. Jonathan Edwards

    Maeve Boothby O'Neill - articles about her life, death and inquest

    Indeed, but then the patient is refusing to be fed presumably. If they want to be fed there is no need to deprive them of liberty - you just offer the treatment. It is the illogicality of invoking a procedure to deprive choice when choice is not the problem that, as my old boss used to say 'even...
  2. Jonathan Edwards

    Maeve Boothby O'Neill - articles about her life, death and inquest

    Interesting. It was the reference to the use of the mental health act that seemed so odd.
  3. Jonathan Edwards

    Maeve Boothby O'Neill - articles about her life, death and inquest

    Yes, I agree. There seems to be a flawed logic involved and I suspect that the quoted guidance isn't intended tone interpreted in the way being implied. It makes no sense. As SNTG points out, there is a difference between going for PEG etc or TPN IV. It is not clear from what we have heard so...
  4. Jonathan Edwards

    Maeve Boothby O'Neill - articles about her life, death and inquest

    The BPS view seems to be that ME doesn't exist and that CFS does not cause starving to death. That makes it difficult for them weigh in maybe. They would have to claim that the problem was another psychological illness. In which case the hospital would have been negligent not to section Maeve...
  5. Jonathan Edwards

    Maeve Boothby O'Neill - articles about her life, death and inquest

    In most cases enteral feeding is probably possible but I agree that there are probably situations like multiple injuries or facial burns where it might be necessary. The guideline may relate to elective use of TPN in chronic disease in contexts that exclude these though.
  6. Jonathan Edwards

    Maeve Boothby O'Neill - articles about her life, death and inquest

    One key point for me is the claim that RCP guidelines say that TPN should not be used where there is a functioning gut unless the patient is detained under the Mental Health Act (sectioned). Being sectioned is not a feature of the patient's illness and not something they have control over. It...
  7. Jonathan Edwards

    Myalgic encephalomyelitis, 1955-1990 - K. Johnstone

    It is something I have increasingly come to see as relevant. The acute infective illness with apparent neurological features at the Royal Free actually has nothing to do with ME/CFS other than that it was one of many apparent triggering events. And as I mentioned in my Qeios piece, that means...
  8. Jonathan Edwards

    Maeve Boothby O'Neill - articles about her life, death and inquest

    One thing that continues to puzzle me is that, unless I am mistaken, not a single ME physician regularly uses S4ME. I have learnt almost everything about the illness, including the background research, from following the forum. When I was involved in RA and lupus I followed a lupus forum in the...
  9. Jonathan Edwards

    Maeve Boothby O'Neill - articles about her life, death and inquest

    I had forgotten that all this happened while Covid was at its worst. It is not that surprising that things might be confused. A lot of people died during the pandemic for reasons other than Covid. But I don't think this in any way alters the evidence that the management was disorganised and...
  10. Jonathan Edwards

    Machine learning classification of functional neurological disorder using structural brain MRI features 2024 Westlin, Perez et al

    Wasn't Frackowiak's taxi driver paper shown to be garbage data? It doesn't, as you say. They don't seem to explain why the psychiatric controls are different from healthy? And if there is a difference what is the justification for putting all psychiatric patients in one group? And so on.
  11. Jonathan Edwards

    Maeve Boothby O'Neill - articles about her life, death and inquest

    Maybe this is in a particular sub-category but my understanding is that an inquest would decide between, for instance, natural causes, misadventure and unlawful killing, without needing to specify who was guilty of what crime.
  12. Jonathan Edwards

    Maeve Boothby O'Neill - articles about her life, death and inquest

    Something I have no information on is the outcome for people in this situation who get feeding support. Other than that there appear to be a few people known of who have been maintained on nutritional support for more than a year.
  13. Jonathan Edwards

    Maeve Boothby O'Neill - articles about her life, death and inquest

    A Daily Mail piece today quotes from a message written by Maeve. I am pasting it here so I know where to find it. "She had also completed an advanced decisions document about her future treatment if she was unable to communicate her wishes. In it she wrote: 'I wish to remain at home and be...
  14. Jonathan Edwards

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    The name Ramsay is just in memory of Melvin Ramsay as far as I know. Anyone can have a Ramsay Fund.
  15. Jonathan Edwards

    Maeve Boothby O'Neill - articles about her life, death and inquest

    I think @dave30th is likely to be tracking the inquest.
  16. Jonathan Edwards

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    The whole thing seems totally incompetent. Maybe the useful outcome will be that everyone, including MEA, may see that the people at BACME have not understood a thing. The obsession with the rehabilitative 'treatment' (that isn't) approach pervades everything I have seen so far.
  17. Jonathan Edwards

    Hypothesis Hypocortisolemic ASIA: A vaccine-and chronic infection-induced syndrome behind the origin of long COVID and ME, 2024, Ruiz-Pablos et al

    Other forms of immune activation are unaddressed by inflammation, of course, but I am only too happy to invoke them in all sorts of ways in disease. Complement activation in the bloodstream is anti-inflammatory for instance. The response a vaccine prevents later inflammation. But when people...
  18. Jonathan Edwards

    Hypothesis Hypocortisolemic ASIA: A vaccine-and chronic infection-induced syndrome behind the origin of long COVID and ME, 2024, Ruiz-Pablos et al

    No. But ASIA is supposed to inflammatory. To be honest, I don't want to go into detail but this stuff is about as close Qanon a immunology gets. It is not only garbage but garbage intended to manipulate the gullible. The cherry picking comment was spot on. It is a waste of time looking for...
  19. Jonathan Edwards

    Mechanism-based therapy of non-cardiac syncope: a practical guide, 2024, Michele Brignole et al

    That looks like a SPAM journal (adverts) but I haven't read the paper.
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