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  1. Jonathan Edwards

    Gastroparesis, post-prandial pain, eating difficulties

    It involves a sense of exertion, yes, but 'energetic' doesn't otherwise have any useful scientific meaning. It just feels like hard work. I think it is important not to start talking about ATP and mitochondria and energy in a metabolic sense when we have no evidence that is the problem and in a...
  2. Jonathan Edwards

    Preprint Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206, 2024, Edwards (Qeios)

    Which is gratifying, but where are all the doubters? Where are all the reviews from professionals I know have been asked to do one? Fairly soon I am likely to modify it with what may be rather more contentious text. If I make it contentious enough sea lion Garner might even appear.
  3. Jonathan Edwards

    Gentle exercises for stiff, atrophied legs?

    Yes, this is a problem that physiotherapists do understand and are very familiar with dealing with. It occurs in people on ITU for long periods. The film clip of J T-B suggests that she had the same problem when trying to stand again. There is likely to be shortening in the whole...
  4. Jonathan Edwards

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

    I don't think it is even that specific, it just means passing the buck.
  5. Jonathan Edwards

    Gastroparesis, post-prandial pain, eating difficulties

    Interesting that I cross-posted with Amw66 on this. I thin we can agree that it makes no sense to say that EDS would be associated with a 'functional problem'. 'MCAS' might be less clear since the mast cells might just be 'malfunctioning'. But we don't have any evidence for either of these...
  6. Jonathan Edwards

    Preprint Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206, 2024, Edwards (Qeios)

    The RCP document on feeding is interesting but as far as I can see says nothing about people with functioning gut needing to be sectioned in order to qualify for enteral or parenteral feeding. In the closest it gets to ME/CFS, which is an example of a 'functional' problem it says that even TPN...
  7. Jonathan Edwards

    Preprint Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206, 2024, Edwards (Qeios)

    Posts moved from Maeve Boothby O'Neill - articles about her life, death and inquest I have been looking through the RCP document on feeding and thinking of some further things I might say on Qeios. I will post on that later. However, it strikes me that it would be useful to add some things...
  8. Jonathan Edwards

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

    And what, pray, does that quarter truth have to do with someone starving to death? Having said that there is too much clashing of narrative why keep doing the same thing?
  9. Jonathan Edwards

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

    Sort of something like that, maybe, yes, @Andy, but: I was a physician. I worked in that culture. Talking to patients seemed an obvious thing to do. It seems weird not to. I am just intrigued by my colleagues behaviour. But when you see a patient in clinic everything is focused on the...
  10. Jonathan Edwards

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

    Hopefully everyone else would realise that if that was the case it was just bullshit.
  11. Jonathan Edwards

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

    I am left wondering what happened to PEG feeding? We are given reasons for not using TPN IV lines - infection. I am not aware of an equivalent risk of septicaemia for PEG. What can the experts here advise on this?
  12. Jonathan Edwards

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

    I am pretty certain that 'medicalise' in this context means to give credence to biomedical explanations and management approaches for an illness. That is the only UK medical usage I am aware of in this context.
  13. Jonathan Edwards

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

    There are biomedical teams in the UK and Netherlands who really do have the skills and insight to be looking in good places. They are not physicians but if they find something the physicians will take an interest. I know that a lot of patients feel people are not looking but to be honest there...
  14. Jonathan Edwards

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

    A fantastic job by @Nightsong. It is all becoming clear that the problem was very much as suspected - not a fault with guidelines but with people putting groundless theories before what was needed. I have had some suggestions about things to add to my Qeios piece, which I can do whenever I...
  15. Jonathan Edwards

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

    I am sure that is right. But I think it may be important to note that somewhere Maeve had said something like that she had been told to lie flat all the time for months as the only road to recovery. That concerns me. We need evidence.
  16. Jonathan Edwards

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

    So yes, reading through who said what, it seems clear that Warren was also working on beliefs at the time.
  17. Jonathan Edwards

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

    I am suggesting that he gets it now, or at least is saying what he would say if he did. I am not in the least implying that the problem was not about beliefs of doctors - in fact that is my point and his point hear - people should have been focusing on what the patient needed, not what they...
  18. Jonathan Edwards

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

    Well, for me the point hits the nail on the head. Which it would do of course because I wouldn't be surprised if it was making use of my Qeios piece.
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