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  1. 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...
  2. 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...
  3. Jonathan Edwards

    An open letter regarding Scientific Reports

    Yes, the archetypal do-gooder I suspect.
  4. 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...
  5. Jonathan Edwards

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

    I do see everyone's point of view but my key thought is that things have gone wrong precisely because in a nearly impossible situation everyone has said 'Oh no, you cannot do that because there is a risk of this'. If you are faced with people in a burning house or someone dying of starvation you...
  6. Jonathan Edwards

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

    Continuing to worry about the complexity and anomalies of disease categorisation and the role of mental capacity I looked up the definition: Mental capacity is the ability to make an informed decision based on understanding a situation, the options available, and the consequences of the...
  7. Jonathan Edwards

    Review ENDOTEXT: CHRONIC FATIGUE SYNDROME, 2023, Lim & Torpy

    I constantly wonder what the motivation is for doctors to write reviews about things they do not know much about.
  8. Jonathan Edwards

    Trial Report High-dose Omega-3 Alters Serum Magnesium & Calcium Levels and Affects Fibromyalgia Symptoms: Randomized,Double-blind,Placebo-Control Study,2024,Fattah

    Current Rheumatology Reviews sounds like a junk journal. A lot of journals charge huge fees for publishing these days though. The strangest thing is that CRR is supposed to be a review journal (they are usually pretty bad) but this is a data paper. Which suggests that it may have been rejected...
  9. Jonathan Edwards

    The Concept of ME/CFS

    I am not suggesting that the two situations are identical, but that they involve similar sorts of processes in combination. I also have variability in my ability to use my knees. If I have a viral infection like Covid, which I have had this week for the fifth time, then 'the power is just not...
  10. Jonathan Edwards

    The Concept of ME/CFS

    I wouldn't look for evidence of PEM being something else. I understand it as a description of fluctuation. Wave on the sea are still sea, not some other stuff. Gusts are still wind. I don't see PEM as a 'different process' but rather the way the ME/CFS process behaves in time relation to...
  11. Jonathan Edwards

    Opinion Challenging the current hypothesis that thrombosis is responsible for the post-COVID-19 condition, 2024, Carson, Davey Smith, Garner et al

    Pretty thin. Where is the pathology if this is going on? Where are the physical signs of embolisation?- rash, nail fold infarcts.... The bright dots in muscle are almost certainly nerves in my opinion, not amyloid. And so on.
  12. Jonathan Edwards

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

    I have not seen any convincing evidence that you need to keep swallowing stuff. People often go on to parenteral nutrition for months and then back to normal feeding. Our friend Jo Cambridge was on parenteral feeding for a while even if she could swallow some fluids most of the time. I don't...
  13. Jonathan Edwards

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

    What hits me about Sean O'Neill's account is the complicity of the legal profession in denying ordinary people justice. I have a neighbour and friend who is a King's Council (and a Dame). I have texted her to ask for her opinion.
  14. Jonathan Edwards

    The Concept of ME/CFS

    I can well imagine that new symptoms occur with PEM on the basis that when we are ill there tend to be thresholds at which new phenomena occur. If I am feverish I nearly always get shivers at times but only if the fever is severe do I get delirium at night. If I have my unexplained...
  15. Jonathan Edwards

    The Concept of ME/CFS

    My understanding is that PEM is by definition a worsening of the same symptoms. So there would be no difference in the symptoms. I have come to understand PEM as identifying a time course rather than anything else. It is supposed to cover worsening after exertion but what I hear is that...
  16. Jonathan Edwards

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

    There still sseems to be considerable uncertainty as to what actually led to what decisions, judging from Sarah Boothby's tweets. I agree it is wrong that more information has not been gathered and that a full enquiry into the sequence of events is needed. It may be that the mental health team...
  17. Jonathan Edwards

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

    We will never know what might have happened. However, if existing guidelines were followed she should have been progressed through options for feeding support according to what was feasible for her. The coroner noted that the 2021 ME/CFS guideline does not provide additional advice on how to...
  18. Jonathan Edwards

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

    My impression is in keeping with @JemPD 's observation that it depends on the level of service. I was quite careful with my wording 'But in practice there is a conceptual line in doctors heads that puts it with the biological group.' They may not be aware that that line is in their heads or...
  19. Jonathan Edwards

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

    Do you think that line is about doctors' perceptions of whether the patient can 'help it' or not? In short, yes.
  20. Jonathan Edwards

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

    Maybe S4ME should make a formal request to Dr Hemsley to share his protocols with the patient community. (If I asked I might be seen as in competition.)
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