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  1. Jonathan Edwards

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

    Todd is right of course. But it looks as if there is something more specific going on - that professional bodies are actively, if covertly, advising against supportive care. That should be fixable. If it isn't, the problem is even bigger than Todd is implying.
  2. Jonathan Edwards

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

    These rationales may be accepted in a 'physician community' but they are not accepted either by academic medicine or by the majority of physicians (who often tend towards BPS). They have no valid basis as far as we know. They are NOT based on available siren but on speculation, much of it rather...
  3. Jonathan Edwards

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

    There was a picture of Sarah with a large pile of documents that looked very much like what you get in a box from a solicitor's office. Sean had the same sort of box with him when arriving at the inquest. Maybe that's coincidence but it may have been that they were not entitled to legal...
  4. Jonathan Edwards

    Stress-sensitive neural circuits change the gut microbiome via duodenal glands, 2024, Chang et al.

    I agree that studying 'stress' in mice is pretty gross. But I think this result may tell us something very important - it may already have been known but ignored. It suggests that just being unwell or suffering from any stimulus that can set off vagal activity can change the microbiome, and...
  5. Jonathan Edwards

    Review Long COVID science, research and policy, 2024, Al-Aly, Davis, McCorkell, Iwasaki, Topol+

    The more a scientist co-authors hot air papers with other hot air merchants the more they prove themselves to be a hot air merchant. Who cares if illness threatens 'economies'? In fact it will boost economies no end by creating healthcare and science jobs - which is what this puff piece is all...
  6. Jonathan Edwards

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

    I also think that the inquest may have achieved the one thing it could achieve, which is to bring a case example out into the open in a way that allows everyone to analyse exactly what the critical blocks are. I don't think anyone on the medical side comes out of this very well, except the...
  7. Jonathan Edwards

    Trial design for drug trials for ME/CFS - discussion thread

    NICE simply requires positive results from reliable trials and we don't have those for either mestinon or LDN in ME/CFS. Physicians should not be prescribing these until we know they are actually useful. Theconsensus for LDN seems to be that it probably isn't, since it has been around for yonks...
  8. Jonathan Edwards

    Trial design for drug trials for ME/CFS - discussion thread

    Actually that was a fake news story put about by people wanting to have the patent. I had planned to use rituximab well in advance of doing so, on purely theoretical grounds!
  9. Jonathan Edwards

    Trial design for drug trials for ME/CFS - discussion thread

    Generally speaking, if a drug works usefully a single well-designed trial shows that clearly. I withdrew from rituximab trials in ME/CFS when I knew Fluge had a good blinded randomised study set up. I would have just wasted more money. Whether or not a drug is worth trying does not have much to...
  10. Jonathan Edwards

    Exhaustion in ME/CFS, what is it and what causes it - discussion thread

    That is likely the one I was thinking of. @Nightsong
  11. Jonathan Edwards

    Trial design for drug trials for ME/CFS - discussion thread

    Not that many drugs are that safe to be honest. I am horrified now to think of how I used to think they were. Everything is relative, of course, but I have tried to think of 'safe' drugs that might be worth trying and consistently failed to find anything I can get enthusiastic about. Naltrexone...
  12. Jonathan Edwards

    Trial design for drug trials for ME/CFS - discussion thread

    I understand that but we cannot expect individuals to take part in trials on the basis of the good of all unless they are honestly told that the chances of something very bad happening to them are almost certainly greater than anything very good. Given that we can be fairly sure that is true for...
  13. Jonathan Edwards

    Exhaustion in ME/CFS, what is it and what causes it - discussion thread

    No but I think a study was done by Andrew Lloyd a long time ago, using electrical stimulation. It probably is not definitive but I don't think it should be ignored. Also my understanding is that on day 1 CPET tests ME/CFS patients produce normal output, or at least comparable to sedentary controls.
  14. Jonathan Edwards

    Trial design for drug trials for ME/CFS - discussion thread

    From an immunologist point of view, ampligen fills me with no enthusiasm. It is unclear to me what if anything it does to the immune system. It seems to be a drug someone made hoping it would be useful but for very obscure reasons. We already have trials that came to no very clear conclusion...
  15. Jonathan Edwards

    Molecular mimicry in multisystem inflammatory syndrome in children Bodansky et al 2024

    The abstract sounds dramatic but is in fact remarkably vague. I have heard stories like this a hundred times and nothing has come of them. It sounds as Asia SNXB is an intracellular antigen, which already raises questions about why antibodies to it should link to multi system inflammatory syndrome.
  16. Jonathan Edwards

    Exercise therapy for chronic low back pain (Cochrane review), 2021, Hayden et al.

    And of course 'exercise therapy' is no more use as a prescription than 'pill therapy'. It could be anything, good, bad or worse. I hear fricative noises at the bottom of a beer container.
  17. Jonathan Edwards

    Scotland Herald: 'Chronic fatigue, 'mass hysteria', and Dr Melvin Ramsay', by Helen McArdle, 2024

    I didn't for a minute suggestion that the patients didn't experience symptoms. I suggested that they might well have had other origins. Viruses do not in general produce signs of focal neurological deficits. Very specific viruses do. In Covid the neurological deficits have probably mostly been...
  18. Jonathan Edwards

    The use of the labels ME, CFS, ME/CFS

    The vast majority of post viral fatigue syndrome cases remit over a period of months. I had post-EBV fatigue and have had post-Covid fatigue but I do not think I have ever had ME/CFS. I think the ME/CFS diagnosis implies more - that the resolution of a normal PVF response has failed to occur, or...
  19. Jonathan Edwards

    Cardiac Output–Cerebral Blood Flow Relationship Is Abnormal in Most ME/CFS Patients with a Normal Heart Rate & Blood Pressure ..., 2024, van Campen

    No it wasn't, but I think measuring blood volume is not that simple. It also isn't necessarily what we really want to know - which is perfusion flow in specific organs. The relation to volume may be complicated.
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