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  1. Jonathan Edwards

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

    The monitoring should be possible, but what would you do with it? For asthma and diabetes we have well documented treatments that provide evidence for doing this in this situation and that in that situation - more bronchodilator or more insulin maybe. For ME/CFS we don't have that. We don't...
  2. Jonathan Edwards

    A question about mitochondria

    Not a bit of it. That is exactly what we have been discussing on threads here for years!!
  3. Jonathan Edwards

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

    Detailed recording ought to be useful for research but the issue here is how people should be assessed in routine practice. Until we have evidence of benefit of one action in one situation and another in another I see no point. People should see a physician who can listen to and advise on any...
  4. Jonathan Edwards

    Animal research for ME

    Now that I remember, @PeterW, we used to call it the Yak Dung Effect in the lab in 1980. Give a mouse or a rat anything and the graph will shift with p<0.01. Or at least one of your graphs will and that is the one to publish.
  5. Jonathan Edwards

    Animal research for ME

    I think it much more likely that it was very sensible and that a new generation of researchers will repeat the mistakes of the 1970s and 1980s. Animal models of disease have been an almost complete waste of time and often misled people into looking at the wrong things for decades (in MS for...
  6. Jonathan Edwards

    Preprint Transfer of IgG from Long COVID patients induces symptomology in mice, 2024, Vidarsson+

    If it was a good model I think drug companies would have sorted out the methodology and been using it for screening drugs for decades. The kinetics and the immunochemistry don't really make any sense to me anyway.
  7. Jonathan Edwards

    Preprint Transfer of IgG from Long COVID patients induces symptomology in mice, 2024, Vidarsson+

    It is hard to wade through it all. Two things I noted: They pooled sera. That seems to me a disaster. If you pool 8 sera and give them to 8 mice then you may have information that at least 1 in 8 of the sera has something in it. If you took just two pure sera and gave them to 4 mice each then...
  8. Jonathan Edwards

    Preprint Transfer of IgG from Long COVID patients induces symptomology in mice, 2024, Vidarsson+

    Having once been an 'animal model authority' I am pretty sceptical about findings like that. There are so many things that can affect your results. Unless the studies are fully blinded (which they rarely are) and repeated with the same spread of results it is anybody's guess what caused them.
  9. Jonathan Edwards

    UK: New advocacy resource for people with ME in hospital

    This would be my main concern right from the outset. There is no point in having an information sheet that sounds right to patients but which ensures that health care staff will switch off completely and go for the psychosomatic approach. People are likely to die as a result. It isn't easy but...
  10. Jonathan Edwards

    Preprint Transfer of IgG from Long COVID patients induces symptomology in mice, 2024, Vidarsson+

    I would contrast this paper with the sort of paper that one found in a journal of 1974 - where a single simple experiment was reported and in six cases out of ten became a classic piece of evidence that everyone learnt about. These days we see thirty seven graphs in colour about various things...
  11. Jonathan Edwards

    Loss of smell and taste

    Loss of smell/taste from drugs and infections often continues long after the cause has gone. My understanding too is that is often the case for Covid.
  12. Jonathan Edwards

    Closed USA, Texas - Long Covid stem cell trial - Hope Biosciences

    So taking cells out of your left arm and putting them in the right does nothing, as expected. There is no way this is a 'placebo response making a treatment effect. Even with a big placebo response a meaningful treatment effect would shift the figures more than this.
  13. Jonathan Edwards

    UK: New advocacy resource for people with ME in hospital

    Yes, I absolutely agree with that. (I have read the whole thing.) The tone seems counterproductive. And I agree that 'early intervention tube feeding.. oversteps the mark. The problem I see, talking to physicians with various viewpoints, is that the alternative is more common and worse - that...
  14. Jonathan Edwards

    Functional Neurological Disorders: Challenging the Mainstream Agnostic Causative Position 2024 Scamvougeras and Castle

    But where did the 'effective therapy' come from. The 1998 article by Chalder and Wessely (?David) describes the detail of how CBT for CFS should be done but at stage when it is not credible that they had evidence that the details made any difference. They made it up first and then got convinced...
  15. Jonathan Edwards

    Functional Neurological Disorders: Challenging the Mainstream Agnostic Causative Position 2024 Scamvougeras and Castle

    I don't think we need to suggest that therapies actually work to explain why proponents are utterly convinced they do. All health care professionals are utterly convinced what they do works simply because they never make any controlled observations and patients are polite. Until very recently...
  16. Jonathan Edwards

    Functional Neurological Disorders: Challenging the Mainstream Agnostic Causative Position 2024 Scamvougeras and Castle

    I could agree that in an ideal world this might be the case. But it is not an ideal world. Problems I see are: 1. Even if there are some people struggling with their mental health there is precious little evidence that psychologists know better than you or I how to help and a lot of evidence...
  17. Jonathan Edwards

    UK: New advocacy resource for people with ME in hospital

    I do have reservations about some of the other recommendations. Reference to 'MCAS' has no place here. Recommending changing drug dosages is also inappropriate. I am not sure where these suggestions are coming from but some of them are not evidence based or well thought out.
  18. Jonathan Edwards

    UK: New advocacy resource for people with ME in hospital

    I am not sure what is controversial about these methods of feeding. There are standardised guidelines for when to use various methods, in the UK provided by the British Association for Parenteral and Enteral Nutrition. If any deviation from the general principles applies in ME/CFS we so far have...
  19. Jonathan Edwards

    Gastroparesis, post-prandial pain, eating difficulties

    Real data don't come from retrospective compiling of medical records. And if this person is not an academic and not doing any serious research there isn't much reason to take their claims seriously. As I say, they are claims I have heard trotted out by physicians for years - but there are never...
  20. Jonathan Edwards

    Gastroparesis, post-prandial pain, eating difficulties

    I am aware that some physicians call themselves neurogastroenterologists. Some of them may know what they are doing but a number of 'eminent' ones in London seem pretty fringe to me, with large private practices.
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