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  1. Jonathan Edwards

    Best articles on ME history

    You might want to look at my Qeis article. For me ME is a defunct concept that was always too muddled to be useful. Basically a confusion of two quite different concepts. Sadly, much of the literature criticising the BPS model is as muddled as the BPS people are, and only serves to perpetuate...
  2. Jonathan Edwards

    Transcriptional reprogramming primes CD8+ T cells toward exhaustion in Myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Iu, Hanson et al

    You are not being dim. I think you have hit the nail on the head. I don't see the validity of the exhaustion idea as an immunologist. Edit: andI are with SL that any skewing is very likely to be due to shift in traffic and lifespan. The key problem with studies like this is that circulating...
  3. Jonathan Edwards

    What percentage of doctors think ME/CFS is psychosomatic?

    I think the Hng piece is fairly realistic. The great majority of physicians I know do not really have ME/CFS on their radar. Nearly all have never heard of the PACE trial. For older physicians I am not sure that asking if they believe anything about ME/CFS in a questionnaire is likely to...
  4. Jonathan Edwards

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

    I understand that it can be over interpreted but I was using it in a combined argument with the fact that first day CPET in ME/CFS tends to be unremarkable. The fact that the twitch data are similarly normal in other conditions is important, I agree. But a first day CPET would presumably be...
  5. Jonathan Edwards

    Why so little focus on Functional Disability and so much focus on “Symptoms”?

    I agree too but note that the biggest problem has been just this focus on function justifying GET as an answer to ME/CFS to increase function while totally ignoring the fact that function is driven by symptoms and that if you increase muscle function (which one exercise trial does show...
  6. Jonathan Edwards

    Position statement: Somatic symptom and related disorders: Guidance on assessment and management for paediatric health care providers

    No I probably misread that but they do reference that garbage review on 'EDS' and chronic pain. And they seem to accept that EDS has 'similar common symptoms and Muti-systemic presentations'.
  7. Jonathan Edwards

    Opinion Towards a cure for long COVID: the strengthening case for persistently replicating SARS-CoV-2 as a driver of [PASC], 2024, Scoullar, Crabb+

    'Long infection' is something we have been well aware of for at least fifty years. But it is a very organism specific thing. Nor virus persists, EBV persists, Varicella-zoster persists, but most viruses do not as far as we know. If long infection is relevant to Long Covid it probably means that...
  8. Jonathan Edwards

    Why so little focus on Functional Disability and so much focus on “Symptoms”?

    This all gets quite metaphysical and when I said thing I was being general. BUT is you want to be purist and metaphysical then the modern scientific view would be that there are no things other than processes or the dispositions or powers that can entail such processes. That may seem a bit too...
  9. Jonathan Edwards

    Review Exercise in Postural Orthostatic Tachycardia Syndrome: Focus on Individualized Exercise Approach 2024 Blitshteyn et al

    That list is simply a string of un-evidenced or meaningless statements presented as expert advice. The paper is presumably just a bid to justify a profitable practice by people with nothing to offer.
  10. Jonathan Edwards

    Proteolethargy is a pathogenic mechanism in chronic disease, 2024, Dall’Agnese et al

    ROS generation in infection is local and as far as I know not a major feature of viral infection. As an immunologist this quotes all sound to me like stringing together various popular memes without any real understanding of inflammation. And presumably if people had mutations in gremlin...
  11. Jonathan Edwards

    Position statement: Somatic symptom and related disorders: Guidance on assessment and management for paediatric health care providers

    Since when was EDS a functional somatic symptom disorder? This seems to be some sort of professional consensus, while being medically illiterate. The mind/brain boggles.
  12. Jonathan Edwards

    Review Interventions for the management of long covid post-covid condition: living systematic review, 2024, Zeraatkar, Flottorp, Garner, Busse+

    The only possible reason for this group of people co-authoring a paper is to further a political objective. Unlike a proper review this is written by a collection of people whose only link is a preconceived idea that rehabilitative therapy works.
  13. Jonathan Edwards

    United Kingdom: ME Association governance issues

    Maybe it has not occurred to Caroline and others at the MEA that a very large number of sensible physicians are likely to agree that the patients' petition is entirely justified. Maybe the ME has never realised that the organisation itself is probably regarded by the medical profession much in...
  14. Jonathan Edwards

    Why so little focus on Functional Disability and so much focus on “Symptoms”?

    All sorts of mechanisms may well have gone under our radar. The mechanism I based treating RA on had gone under the radar of immunologists for decades despite being fairly easy to see if one thought clearly (which one can do with hindsight). Prions were totally unexpected. Even germs were...
  15. Jonathan Edwards

    COFFI - The international collaborative on fatigue following infection

    There seems to be a deep lack of common sense in psychological theorisation that pops up in all these ideas. We are told that a pathological state is explained by some normal regulatory process - like Pavlovian conditioning or predictive coding. Yet these processes lead to normality. So there...
  16. Jonathan Edwards

    Why so little focus on Functional Disability and so much focus on “Symptoms”?

    Yes, I agree that researchers seem not to be even trying to model that long term aspect. Theories about mitochondrial function or low blood volume or whatever never seem to provide any explanation for the long term time profile. What is not clear to me is that we know that it is the PEM...
  17. Jonathan Edwards

    Why so little focus on Functional Disability and so much focus on “Symptoms”?

    And judging by reading a bit more of the thread the thresholds seem pretty much all over the place both for different people and individuals across time so as a scientists I wouldn't;t even try to model that.
  18. Jonathan Edwards

    Why so little focus on Functional Disability and so much focus on “Symptoms”?

    Yes I get all this stuff but I am trying to make the point that I think in unravelling the problem scientifically the biggest mistake is to disregard the actual symptoms and focus on thresholds. Understanding thresholds needs a quantitative model and we rarely ever get that good with our...
  19. Jonathan Edwards

    Proteolethargy is a pathogenic mechanism in chronic disease, 2024, Dall’Agnese et al

    I don't see any particular reason why. I am finding it hard to see how this concept of proteolethargy relates to disease if it occurs in both diabetes and inflammation, which present with unrelated symptoms. Much of the time diabetics with functional insulin lack are asymptomatic until...
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