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  1. Sasha

    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    In an open-label trial, why do you think that subjective outcomes are merely 'not ideal' rather than fatal? You seem to be putting some sort of limit on the bias that they can introduce. Do you think that bias can turn a null result into a positive one? Measuring activity for PwME was already...
  2. Sasha

    Preprint Molecular Mimicry Between Epstein-Barr Virus and Human Herpesvirus-6 Proteins and Central Nervous System Proteins..., 2025, Almulla, Maes et al

    I want a cure, so how can we start a new school of thought? I'm sorry to hear Jo isn't well. I'm sure we all appreciate all her hard work for us and hope she feels better soon.
  3. Sasha

    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    So you keep saying, and we keep pointing out why you can't trust subjective measures in open-label trials. Is there something that you disagree with in our explanations? If so, what is it?
  4. Sasha

    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    I have the impression that you haven't read @Jonathan Edwards's expert witness statement, @dundrum. It's here, starting on p.5. I don't think it's possible to claim to be familiar with the critiques of PACE and GET/CBT studies generally if you're not familiar with the arguments made in that...
  5. Sasha

    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    @dundrum, relating to harms in PACE, again from Wilshire et al.: The adverse events measures collected during the trial included: serious adverse events (death, hospitalisation, etc.); serious deterioration (a broader category that included a serious adverse event, sustained decrease in...
  6. Sasha

    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    @dundrum, relating to the 6MWT in PACE, this is from the critique of PACE by Wilshire et al.: A number of other secondary outcome measures were collected at 52 weeks... distance walked in six minutes ... Here, 69% of the GET group completed the test, and walked approximately 10–12% farther in...
  7. Sasha

    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    Graded exercise therapy has not been shown to help. It has only been tested in open-label trials, and we have explained to you why subjective measures in those trials can't be taken at face value, and yet you continue to talk as though they can be. I'm genuinely curious as to why you do, and...
  8. Sasha

    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    Why are other limitations and biases not enough to junk a study? For example, an open-label trial with subjective measures, where you can place no limit on the effect size of the bias, and it might be enough to make a harmful intervention look like a helpful one? I have the impression that you...
  9. Sasha

    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    My bolding: Do you mean that if all we have is poor studies, we should take their positive results at face value because that's all we have? If so, what is it about them being all that we have that means that we should take their positive results at face value?
  10. Sasha

    Autoantibody targeting therapies in post COVID syndrome and myalgic encephalomyelitis/chronic fatigue syndrome, 2025, Wohlrab et al

    Is it dangerous? It doesn't sound like a very attractive treatment to be on the receiving end of.
  11. Sasha

    Effect of Pain Reprocessing Therapy vs Placebo and Usual Care for Patients With Chronic Back Pain an RCT, 2021, Asher, Gordon et al

    You've given reasons that you believe to be logical but you don't seem to be taking in the counter-arguments, such as the one I just made. That's an appeal to authority rather than logic, but the people who do double-blind placebo-controlled drug trials would, I expect, share my opinion (and...
  12. Sasha

    Effect of Pain Reprocessing Therapy vs Placebo and Usual Care for Patients With Chronic Back Pain an RCT, 2021, Asher, Gordon et al

    Fair enough but this is the fundamental issue and the reason why you're finding no agreement with your position here. But 'mitigated to a certain extent' isn't good enough if you're trying to draw conclusions about whether a therapy works. You can never know to what extent you've failed to...
  13. Sasha

    Effect of Pain Reprocessing Therapy vs Placebo and Usual Care for Patients With Chronic Back Pain an RCT, 2021, Asher, Gordon et al

    You may not have seen my post earlier in the thread where I asked you if you accepted that you can't rely on subjective measures (people saying how they feel) in an open-label trial. Do you not accept that? And if you don't, why do you think that drug trials are double-blind and...
  14. Sasha

    Spontaneous, persistent, T cell–dependent IFN-γ release in patients who progress to Long Covid, 2024, Krishna et al

    I may not have understood the context in which you're framing this but so many PwME are disbelieved about their illness, by everyone from family members to their doctors, that a diagnostic test would be life-changing. And a diagnostic test would surely change how society as a whole views PwME...
  15. Sasha

    Spontaneous, persistent, T cell–dependent IFN-γ release in patients who progress to Long Covid, 2024, Krishna et al

    The authors say: 'At this stage, it is not clear whether IFN-γ is a mediator or a biomarker of Long Covid symptoms. For future work, it is worthwhile investigating whether patients with chronic postviral symptoms also exhibit high IFN-γ secretion, and if this is the case, then it could be a...
  16. Sasha

    Spontaneous, persistent, T cell–dependent IFN-γ release in patients who progress to Long Covid, 2024, Krishna et al

    I've been trying to fathom whether the study authors collected enough data on symptoms to be able to identify a subset of PwME post-hoc and see if the finding holds up for them alone. Table S2 doesn't include PEM among 'cases where there was a single, predominant symptom at point of study...
  17. Sasha

    Spontaneous, persistent, T cell–dependent IFN-γ release in patients who progress to Long Covid, 2024, Krishna et al

    Could we get such a study done via the UK ME/CFS Biobank? This could be done very quickly, surely?
  18. Sasha

    Spontaneous, persistent, T cell–dependent IFN-γ release in patients who progress to Long Covid, 2024, Krishna et al

    If I've understood the cited paper correctly, they've done this but in poorly characterised PwLC, not PwME.
  19. Sasha

    October 2025 IACFS/ME Conference

    The submissions deadline isn't until 19th May, though...
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