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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

    Well I guess I could add that in as another dud since cuts in funding would not (or should not) have affected the project once set up. But it would be easier for them to quibble. The other two suggestions were clearly bogus. And I want to be short and snappy.
  2. Jonathan Edwards

    Mind and Body in the Guardian again

    Yes, it is pretty weird to see better with glasses upside down, although it might occur if there is different astigmatism in each eye. (I am not that convinced of the AI story.) And this would definitely be structural, not functional. The shape of the lenses - either the ones in the eyes or the...
  3. Jonathan Edwards

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

    Thanks both, that was it. I am floating the idea of writing to the BMJ Editor thus or some such: Edit: I am updating this draft as comments come in so that people do not have to read several drafts. “Advocates of the intervention launched a full-on bid to try to stop the project. “ 27th...
  4. Jonathan Edwards

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

    Can anyone point me to where Hilda made that remark about treatment advocates blocking the project?
  5. Jonathan Edwards

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

    At some point somebody needs to say who blocked the re-write. It wasn't a robot. It was a human being. They need to be named and shamed. Where is Soares-Weiser in all this? Where is Leng?
  6. Jonathan Edwards

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

    It seems a fair account of the situation but to my mind lacks bite. Where is the comment that there was a 'full on attempt to block the project from advocates of the treatment' or whatever?
  7. Jonathan Edwards

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

    News Chronic fatigue syndrome: Outcry over Cochrane decision to abandon review of exercise therapy BMJ 2025; 388 doi: https://doi.org/10.1136/bmj.r169 (Published 27 January 2025)Cite this as: BMJ 2025;388:r169 Article Related content Metrics Responses Jacqui Wise Author affiliations A...
  8. Jonathan Edwards

    Thesis Investigation of an ME/CFS-associated Mutation in the Transmembrane PRR L-SIGN and Its Effect on Infection and Phagocytosis, 2024, Schwarz

    I think that is what was done with the Leeds UK Biobank data, with 2000 ME/CFS cases and probably 20,000 controls. If I remember rightly it did not confirm any prior suggested links, although that may not have been specifically published. DecodeME was set up on the basis that even with 2000...
  9. Jonathan Edwards

    Thesis Investigation of an ME/CFS-associated Mutation in the Transmembrane PRR L-SIGN and Its Effect on Infection and Phagocytosis, 2024, Schwarz

    I may have misremembered but I think we had looked at this study and somebody did try to check it with another cohort and it didn't pan out.
  10. Jonathan Edwards

    Mind and Body in the Guardian again

    Absolutely. Although one could perhaps insist that it was thinkings popping in and out transiently. A string of pearls (to quote James) rather than a stream. Since physics now tells us that everything is just poppings in and out of processes, or events of connection, I find that very satisfactory.
  11. Jonathan Edwards

    Thesis Investigation of an ME/CFS-associated Mutation in the Transmembrane PRR L-SIGN and Its Effect on Infection and Phagocytosis, 2024, Schwarz

    This is the study with 40 ME/CFS cases I think - which seems unlikely to be reliable evidence for a link. The investigation of the mutation does not seem to have come to any great conclusion?
  12. Jonathan Edwards

    Mind and Body in the Guardian again

    That does not surprise me at all but of course if they are physical just like other causes in the body then surely it is just the body doing its stuff? Which is the standard scientific position so what was all the mind-body fuss about? But yes, it goes round in circles. And to be honest the...
  13. Jonathan Edwards

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

    I don't think there is any reason to think the B or plasma cells are abnormal, just that the selection processes have been skewed. B and plasma cells in autoimmunity are entirely 'normal' as far as we know. (Except in rare cases where there may be an association with Monoclonal Gammopathy of...
  14. Jonathan Edwards

    If ME/CFS research got £1 billion, what would stop it being wasted?

    I am suggesting that your information sheet should be honest, and in a way that pretty much no information sheet for CBT trials has been so far. Being honest means telling patients what the evidence is for thinking that the treatment might help them. There isn't any so presumably previous...
  15. Jonathan Edwards

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

    I agree that Hilda seems to have done her best and cannot be now accused of still trying to cozy up to Cochrane. But what has been clear from the outset is that, apparently as with Tovey, she never understood the general argument about these trials being worthless as gauges of treatment...
  16. Jonathan Edwards

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

    It would have been interesting to have a video of that conversation to re-run in slow motion like on a TV crime series. I used to think Cochrane reviews were fairly reliable but I also assumed that anyone who got involved in the practical side of Cochrane must be a bit of a nerd, addicted to...
  17. Jonathan Edwards

    Mind and Body in the Guardian again

    I actually see it the other way around, inasmuch as I think they even have coherent thoughts on this. The 'mind-body' or BPS people do not think thoughts are physical. That is what the standard science view thinks. They think that thoughts are causal in a non-physical way. They think they are...
  18. Jonathan Edwards

    Mind and Body in the Guardian again

    I have come to think that 'these diseases' have told us just how little we understand of human nature, or at least how little the human-naturologists (aka psychologists) do.
  19. Jonathan Edwards

    If ME/CFS research got £1 billion, what would stop it being wasted?

    I largely agree @Nightsong. There might be an opportunity to do something creative with AfME at this point but at this point I would just be interested to see what reactions might be to this discussion from whatever quarters.
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