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  1. Jonathan Edwards

    “Dr. Ken Friedman and Dr. David Maughan – ME/CFS and Long Haul Covid Similarities and Ramifications” podcast

    Sorry but that makes no sense. In order to attribute a cause to some health condition you have to define the health condition you are wanting to explain first, and then consider whether to link it to a cause. If you don't know what the cause is there is no justification in making the link. You...
  2. Jonathan Edwards

    “Dr. Ken Friedman and Dr. David Maughan – ME/CFS and Long Haul Covid Similarities and Ramifications” podcast

    I think he used the same methods as everyone else - and none of them have found anything in any other diseases much. The amount of money wasted on T cell research runs into many billions!
  3. Jonathan Edwards

    “Dr. Ken Friedman and Dr. David Maughan – ME/CFS and Long Haul Covid Similarities and Ramifications” podcast

    Wessely's interest emerges at the time the biological work declines, yes, but I don't see how we can know what caused what. Durval Costa's work on brain blood flow actually came out in 1992-4, although there were never any really definitive findings. Wessely's comment on T cells, to be fair...
  4. Jonathan Edwards

    “Dr. Ken Friedman and Dr. David Maughan – ME/CFS and Long Haul Covid Similarities and Ramifications” podcast

    Yes, I think there is an important distinction there that may be missed. PVFS seems to have been created as a concept some time around 1980 to recognise that a group of people do not just have fatigue for a few months after EBV (PVF) but continue with a more specific and complicated syndrome -...
  5. Jonathan Edwards

    “Dr. Ken Friedman and Dr. David Maughan – ME/CFS and Long Haul Covid Similarities and Ramifications” podcast

    Yes, I am not in any way disputing that there is evidence for infections being noted at the beginning of ME in a good number of cases. But that has nothing to do with infection being part of the definition of ME/CFS. The concept of ME/CFS is a concept of a state of ill health, without reference...
  6. Jonathan Edwards

    Fatigue - is it the main symptom of ME/CFS and Long Covid? Discussion thread

    Yes, there is a strong argument there. But just as in philosophy, where 'dualism' depends on what you mean by dual, one would have to ask what is meant by exertion intolerance - what symptom is the intolerance manifest as? People with cardiac and renal failure and obese people have exertion...
  7. Jonathan Edwards

    “Dr. Ken Friedman and Dr. David Maughan – ME/CFS and Long Haul Covid Similarities and Ramifications” podcast

    Hm. The way things are packaged right now you have medics like me, Brian Hughes, Nigel Speight, Willy Weir, Ilora Finlay, Carol Black, not to mention Dave Tuller, Mary Dimmock, Saugstad, Rönning and people all over the world, spending many hours, mostly entirely for free, trying to get things...
  8. Jonathan Edwards

    Health Sense article: Why deny patients with chronic fatigue syndrome treatments that can help?, 2022, by Peter White

    Even if the committee agree that Lady Tweedsmuir's comments about the quality of your marmalade were offensive, Caroline, they are unlikely to make that public, it seems.
  9. Jonathan Edwards

    Fatigue - is it the main symptom of ME/CFS and Long Covid? Discussion thread

    But if PEM isn't a sort of fatigue then I don't get what it is. I have had Covid-19 this last week and have been asking myself questions about how things feel. There are periods when I feel quite perky for a bit and other periods when I still feel pretty rubbish and also patches when I feel grim...
  10. Jonathan Edwards

    CSF Biomarkers in COVID-19 Associated Encephalopathy and Encephalitis Predict Long-Term Outcome, 2022, Mar Guasp et al

    The wording is naff, I agree, but it is reasonably clear what is meant. Cell death in this context is not in itself inflammatory. It may be due to viral cytotoxicity, although the evidence for that in brain seems limited for Covid. It may very well be ischaemic or embolic - basically stroke. At...
  11. Jonathan Edwards

    “Dr. Ken Friedman and Dr. David Maughan – ME/CFS and Long Haul Covid Similarities and Ramifications” podcast

    OK so if the criteria are that bad why has this not been discussed here over the period of the NICE guideline development? Why were the NICE criteria approved by at least four intelligent patients on the committee and some very open-minded sympathetic professionals like Caroline Kingdon and Luis...
  12. Jonathan Edwards

    “Dr. Ken Friedman and Dr. David Maughan – ME/CFS and Long Haul Covid Similarities and Ramifications” podcast

    But is that right? My understanding is that a policy of focusing on treatment was made around 2001-2002 by MRC since research into cause had stalled. I cannot think of much productive research into cause in the 1990s. The biomedical stuff seems to have ground to a halt at least five years...
  13. Jonathan Edwards

    “Dr. Ken Friedman and Dr. David Maughan – ME/CFS and Long Haul Covid Similarities and Ramifications” podcast

    The psychiatrists made a complete mess, yes, but I am not sure they were the reason for the drop off in other research. Around that time Venables had looked for autoantibodies, Richard Edwards had looked for muscle changes, even Wessely had looked at some lymphocytes and genes. Everything drew a...
  14. Jonathan Edwards

    Fatigue - is it the main symptom of ME/CFS and Long Covid? Discussion thread

    I think this is a completely non sequitur argument. The relevant question would be more like 'which of the symptoms shown by the broad group of people covered by post-covid illness or LongCovid is most likely to indicate that they actually have flu?' The answer is fairly simple - if they have...
  15. Jonathan Edwards

    Long Covid in the media and social media 2022

    'Subclinical' actually means 'causing no symptoms' so it would be an unfortunate term. I have not yet seen evidence that suggests to me that these autoantibodies are relevant. If you look for autoantibodies you will always find some but unless there is a consistent high level pattern they are...
  16. Jonathan Edwards

    Fatigue - is it the main symptom of ME/CFS and Long Covid? Discussion thread

    The Medscape piece is lousy but this seemed to me reasonable. If the main problem was shortness of breath then ME/CFS would not be something to focus on. If the main problem is something most easily labelled 'fatigue', even if that just means some indescribably feeling of awfulness that makes it...
  17. Jonathan Edwards

    “Dr. Ken Friedman and Dr. David Maughan – ME/CFS and Long Haul Covid Similarities and Ramifications” podcast

    Yes, and I think rightly so because it was originally intended to indicate an illness due to one specific unknown virus with features suggestive of encephalomyelitis. As indicated above and suggested by what you say buy the 1980s there was doubt as to whether it was any particular virus...
  18. Jonathan Edwards

    “Dr. Ken Friedman and Dr. David Maughan – ME/CFS and Long Haul Covid Similarities and Ramifications” podcast

    But that is obviously an inappropriate analogy since for ME/CFS we have pretty good evidence of it being triggered by a wide range of infections, including it seems Covid-19. Practicing medicine on the basis of people's pet theories is not a good idea, as we all know. Pulmonary embolism might...
  19. Jonathan Edwards

    “Dr. Ken Friedman and Dr. David Maughan – ME/CFS and Long Haul Covid Similarities and Ramifications” podcast

    No it is just a matter of the facts. You cannot define an illness as being due to Blue Meanies that have only been seen in one case at midnight in midsummer. ME/CFS is defined as a syndrome not as the result something that might or might not have been there. In disease category terms it is...
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