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  1. Jonathan Edwards

    United Kingdom: News from Forward-ME Group

    My understanding was that now that Saul Berkowitz has left the service it is just a mixture of psychiatric and unashamed alternative medical quackery. UCLH has a neurogastroenterology set up for feeding support but I think it highly unlikely that there is any link to the RNH for Integrative...
  2. Jonathan Edwards

    The Concept of ME/CFS

    Nath and Walitt claim that if it is shown that your muscles work OK and you claim not to be able to use them this must be due to a faulty 'effort preference'. At least I think they say that, they seem to say different things at different times. We know that is nonsense because there are lots of...
  3. Jonathan Edwards

    What needs to change to ensure better care for people with ME/CFS with feeding difficulties?

    I don't follow. We know that mental capacity was mentioned. That can only have been relevant if it would have affected policy. I didn't see any reference to what would have been done if the answer on capacity had been different.
  4. Jonathan Edwards

    United Kingdom: News from Forward-ME Group

    The account of Dr Strain's presentation does not really say anything but hopefully I can see the video. The session on severe ME/CFS from UCLH does not say anything much beyond the obvious lack of provision. The tricky issues do not seem to have been tackled. Edit: I don't seem to be able to...
  5. Jonathan Edwards

    United Kingdom: News from Forward-ME Group

    The sleep session sounds like garbage.
  6. Jonathan Edwards

    United Kingdom: News from Forward-ME Group

    Vikki McKeever raises the point of inadequate medical input to services which seems good. I agree that the use of a dysregulation model as a 'basis for therapy' is worrying. The only basis for therapies when we actually have some will be reliable evidence, not any form of theory.
  7. Jonathan Edwards

    United Kingdom: News from Forward-ME Group

    Fair enough, but I would seek endorsement once the materials were ready. I wouldn't want to get into negotiating content or structure in order to get endorsement.
  8. Jonathan Edwards

    United Kingdom: News from Forward-ME Group

    Stewart appears to be a private physician (for the last 45 years) with quirky ideas on nutrition. How someone like that can be suitable as an opening medical speaker beats me. There is a generally Stone Age feel about the whole thing.
  9. Jonathan Edwards

    United Kingdom: News from Forward-ME Group

    I am not sure what a charity would have to offer though. There is no cost involved, just hard work. And there needs to be no political agenda.
  10. Jonathan Edwards

    United Kingdom: News from Forward-ME Group

    I wonder what he prefers? Medicine no longer follows 'common sense'. It follows reliable evidence. What success of the service? etc. I don't know the answer to Trish's question. Except of course produce our own S4ME educational literature. That could be done but it needs a lot of energy. I...
  11. Jonathan Edwards

    United Kingdom: Learn about ME - webinar for GPs

    You may be right but I think their hypothesis needs to be thought through carefully and as the paper is written there seem to be quite a lot of assumptions about what one would expect that I am not sure are necessarily as self evident as they might suggest.
  12. Jonathan Edwards

    What needs to change to ensure better care for people with ME/CFS with feeding difficulties?

    I absolutely agree. I have tried to generalise as far as I can but it is difficult to avoid at least indirect reference to the one example we have some information about and it is crucially important for me to get the ideas about this right if I am to try to argue the case with professional...
  13. Jonathan Edwards

    What needs to change to ensure better care for people with ME/CFS with feeding difficulties?

    I don't think we know that at all. The doctors appear to have decided that if sectioning was not applicable then they had no responsibility to do more than try an NG tube once or twice. If a patient is deemed sectionable that means that they are deemed not to be able to make decisions about...
  14. Jonathan Edwards

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

    We disagree, Valerie, I guess. The legal aid issue I see as largely a red herring. The injustice in the inquest goes much deeper than that, as in the Post Office case. I am very happy to admit that the medical profession is just as bad in certain respects but perhaps not at this level of...
  15. Jonathan Edwards

    What needs to change to ensure better care for people with ME/CFS with feeding difficulties?

    Another way of looking at it might be that you cannot diagnose (in BPS terms) a functional disorder and at the same time claim the person has mental capacity because a functional disorder entails a failure to understand what is going on. Even for those who happily accept that they have seizures...
  16. Jonathan Edwards

    What needs to change to ensure better care for people with ME/CFS with feeding difficulties?

    The definition depends on more than just information. I agree that we think we could still come to a rational decision in the face of limited information, understanding and options. BUT in the real life context none of these things can be pinned down. Moreover, although human beings have a set...
  17. Jonathan Edwards

    An open letter regarding Scientific Reports

    Yes, the archetypal do-gooder I suspect.
  18. Jonathan Edwards

    The Concept of ME/CFS

    That is clearly not what I was implying at all! The question is why cold sores crop up after a period of exertion. I don't think we have an answer but it has been standard dogma for a long time that herpes HSV1 infection can produce cold sores following general physiological upsets, presumably...
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