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  1. Jonathan Edwards

    Thesis Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Clinical trials, medical treatment and pathomechanisms, 2024, Rekeland

    This is a rather confusing statement. There is no reason to expect rituximab concentrations or kinetics to relate to improvement dynamics. You expect the B cell or antibody levels to correlate. Most of the rituximab is gone long before antibodies go down. The phase three trial was set up...
  2. Jonathan Edwards

    Thesis Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Clinical trials, medical treatment and pathomechanisms, 2024, Rekeland

    It doesn't say that. It says that improvement was sustained for six years. But if the improvement had nothing much to do with the cyclophosphamide, as is perfectly possible, then the cycle just didn't work. When cycle at very high dose works is followed by objective changes in autoimmune...
  3. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    Do we have a thread on the March 2024 BACME guide to severe and very severe ME/CFS?
  4. Jonathan Edwards

    Severe difficulties with eating in ME/CFS

    I had not been through the BACME document for sever and very severe - at least not this version from March. I think we have a thread on it and I agree that although quite a lot of it is sensible it veers off the road in the usual places. I actually think the bit on nutrition is pretty good. I...
  5. Jonathan Edwards

    Practical Recommendations for Exercise Training in Patients with Long COVID with or without Post-exertional Malaise, 2024, Gloeckl, Scheibenbogen+

    Well, if they just have anosmia presumably they can do as much exercise as they like anyway so there is no need to tell them to as management of 'LC'. And no, I don't think there is any evidence for exercise being beneficial for people with lung disease. Of course rehab units will push it as if...
  6. Jonathan Edwards

    Practical Recommendations for Exercise Training in Patients with Long COVID with or without Post-exertional Malaise, 2024, Gloeckl, Scheibenbogen+

    What on earth is Scheibenbogen doing on this? Why? I completely disagree. The evidence is that exercise prolongs healthy life in a steady state situation by reducing risk factors. That has nothing whatever to do with any benefit for people who are ill. You do not exercise people who have other...
  7. Jonathan Edwards

    Review Attenuating Post-exertional Malaise in [ME/CFS] and Long-COVID: Is Blood Lactate Monitoring the Answer? 2024 Faghy et al

    So is this venous blood or more likely just blood from traumatised micro vessels during a pinprick? Presumably it measures lactate in skin dermis at some peripheral site like the fingertip? If peripheral circulation is slow would that raise the level because of greater de-oxygenation? Would...
  8. Jonathan Edwards

    Australia: RACGP: GET for CFS

    Glasziou justs worships exercise, in whatever context. He has said so. He thinks it is wonderful.
  9. Jonathan Edwards

    Review Attenuating Post-exertional Malaise in [ME/CFS] and Long-COVID: Is Blood Lactate Monitoring the Answer? 2024 Faghy et al

    I have not taken the trouble to search through but do we know how lactate is being measured in these devices? Is it on optical spectrum or is blood actually sampled or what? I wonder if venous pooling affects it? Someone lying in bed doing nothing might have a high reading simply because of...
  10. Jonathan Edwards

    Unrest Continuing Medical Education Program (CME/CE)

    Things have moved on in the last 5 years.
  11. Jonathan Edwards

    Review Attenuating Post-exertional Malaise in [ME/CFS] and Long-COVID: Is Blood Lactate Monitoring the Answer? 2024 Faghy et al

    It is unlikely to correlate directly with PEM I think - it would go up with exertion and be down by the time of PEM. Of all the things that cause PEM during exertion it is only one of hundreds and I doubt a particularly likely candidate. It certainly wouldn't be causing it directly, having gone...
  12. Jonathan Edwards

    Why are psychologists and rehabilitationists so unaware that their research, questionnaires and treatment can cause harm?

    Maybe they moved to psychiatry thinking that if they screwed up badly not so many people would notice.
  13. Jonathan Edwards

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

    I would suggest that there is no such thing and never will be. Any assessment is for a purpose. There are myriad purposes and each will be suited best by a different assessment. The whole thing is a mirage.
  14. Jonathan Edwards

    Studies looking at PEM - have they measured PEM or just the response to the challenge used?

    I would say Sonja Kohl has got this wrong. PEM is not a mechanism. It is a temporal pattern of symptoms. It is symptoms. And whether or not it reflects 'multi-system pathology' seems to me to be purely speculative and rather unhelpful. At least Davenport seems to be right in saying that CPET...
  15. Jonathan Edwards

    Why are psychologists and rehabilitationists so unaware that their research, questionnaires and treatment can cause harm?

    Because all psychology is based on a deeply flawed model of how our thoughts work. And so nobody can produce any reliable testable predictions so there is no science. The flaw in the model is in front of our noses and a Martian might well see it at once but human beings find it very hard to...
  16. Jonathan Edwards

    Why are psychologists and rehabilitationists so unaware that their research, questionnaires and treatment can cause harm?

    You learn that on your first student firm as a medical student. It ain't difficult if you have your eyes open.
  17. Jonathan Edwards

    USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

    I had a look through the transcript. I think it may be just as well that it has raised no discussion here. It is the usual ramble about muddled vague concepts without any data. I am a bit surprised that NIH should host this but free speech is free speech. It would be nice to see some sort of...
  18. Jonathan Edwards

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

    Yeah and who does the reviewing of the reviewing of the reviewing? The circular nature of the problem is something budding researchers get to understand pretty early on. As an old boss of mine said 'The system stinks'. But who decides how to unstink it if not the system? You cannot expect...
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