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  1. Jonathan Edwards

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    I don't think BMJ will run it because I mention a name - Chalmers - and that is not allowed. So by all means post it. The version sent was: Dear Editor, Your 27th January News article by Jacqui Wise (2025) gives a fair account of the disgraceful behaviour at Cochrane over the abandonment of...
  2. Jonathan Edwards

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    And that is an anecdote @dave30th ;). Remember when Michael Buchanan came back to us and said that an eminent Cambridge statistician thought PACE was not too bad - so the deal's off? (Another anecdote.)
  3. Jonathan Edwards

    Mind and Body in the Guardian again

    OK, so we probably agree roughly on that. But why is it 'software', since it is going to be neuronal microstructure presumably that mediates response patterns - I don't mind but it gives the impression of some sort of understanding I am not sure we have. And maladaptive motor response sounds...
  4. Jonathan Edwards

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    Yes, that is why we test drugs on rats and if they work on rats we test them on humans. But the analogies need to be realistic. The sets and subsets have to be relevant to what is being studied. Where there are obvious differences in members of a set then confidence changes but the most...
  5. Jonathan Edwards

    United Kingdom - Suffolk and North East Essex ME/CFS services

    It looks like it has gravitated to 'activity management' = GET. I am sorry that I was not of more use here.
  6. Jonathan Edwards

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    It might indeed, and it sounds as if they had to scrape the barrel to recruit. I am just saying, though, that those figures for people referred with suspected ME/CFS may not be directly relevant if they were actually given different diagnoses from CFS.
  7. Jonathan Edwards

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    I appreciate that. And I think it is useful for us all to realise how hard it can be to see what one might call mathematical necessities - like in set theory. But I think the example of using painkillers for RA on the basis of them working for joint pain is a pretty simple demonstration that...
  8. Jonathan Edwards

    What do you think needs to be tested in the blood (plasma, PBMCs, etc) of patients?

    In general I would shift to sorted cell studies. The 'PBMC' category was always pretty ridiculous because it includes at least four largely unrelated cell types. They might all be affected by a metabolic shift but since cells in blood are by and largely just inactive cells undergoing...
  9. Jonathan Edwards

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    That's right @Trish, but, as discussed with @Utsikt, examples like this are what I call 'special pleading' and although they may be valid, if we don't know they are, the default probability estimation remains. Basically NICE cannot alter a recommendation on the basis of 'what if we think of this...
  10. Jonathan Edwards

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    They apply to the narrower case until proved otherwise by the nature of set theory @Utsikt. I thin you have still got this back to front - maybe because you are unhappy about the implications of getting it the right way around?!!
  11. Jonathan Edwards

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    Nobody is labelling people who do to conform to ME/CFS criteria as ME/CFS, any more than they are labelling people with joint pain by not RA, RA. One very unfortunate by product of this sort of debate I see is that if there are indeed a lot of people with 'chronic fatigue syndrome' who do not...
  12. Jonathan Edwards

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    But it doesn't @Medfeb. If an anti-inflammatory analgesic is studied in large trials of joint pain do we then say that it should not be prescribed for rheumatoid arthritis because the trials did not require symmetrical joint swelling or a raised ESR? No, we use most drugs test on brand...
  13. Jonathan Edwards

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    Interesting data but these 'others' would presumably have been diagnosed as having these other conditions rather than CFS or ME/CFS. I don't think it suggests that people like Peter Denton White were managing many people as 'CFS' or 'CF' who did not in fact have ME/CFS. They would not have...
  14. Jonathan Edwards

    Mind and Body in the Guardian again

    Two of the authors of that are Stone and Carson and we have pages of posts here detailing their poor quality arguments and evidence. I haven't read through but as far as I got is the usual vague reference to randomised trials - which are almost certainly unblinded and full of other problems.
  15. Jonathan Edwards

    Mind and Body in the Guardian again

    Fair enough but it is unclear to me exactly what you are meaning by functional disorder. There are certainly people with unexplained neurological problems without structural change. And some of them fall Ito fairly stereotyped patterns. What I am less convinced of is that putative benefits of...
  16. Jonathan Edwards

    Deep Sequencing of BCR Heavy Chain Repertoires in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2025, Ryback et al

    No because we have absolutely no understanding of these B cell IgHV gene usage shifts. A likely candidate might be complement mediated selection but complement does so many things we would need to know much more and with much greater certainty to tart playing around with it.
  17. Jonathan Edwards

    Placebo effect discussion thread

    What would you investigate, @Sasha? We haven't found anything to distinguish people with ME/CFS from healthy controls much so where would you start separating two groups both with normal tests? If a significant proportion of people with ME/CFS fell into a group that did have abnormal tests we...
  18. Jonathan Edwards

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    Statistical power does not come into the extrapolation from the wider set to the narrower one because there is nothing to do statistics on in this situation. Other than what the PACE authors did, which was a post-hoc sub analysis that showed no difference between people with PEM and others. But...
  19. Jonathan Edwards

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    I don't buy it. Remember that Simon Wessely said that yes there are very ill disabled people who he loved to look after with chronic fatigue syndrome but they are different from people who think they have ME because having ME is just thinking you have ME. Admittedly, the logic starts to fall...
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