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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

    Hilda raises it in her blog and the letter is really a pointer to her blog. Mentioning the Wise piece is just an excuse for raising the topic with BMJ and pointing out that it does not give the full picture. I am ambivalent about mentioning Hilda's loss but I want to give her a lot of credit...
  2. Jonathan Edwards

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

    I actually see it the other way around. If a BMJ reader sees a title about 'Cochrane's failure on ME/CFS' they will think 'Oh yeah, been there, done that'. The title is deliberately intended to make readers curious. Similarly, if I go on about poor reviews and harms to patients the same 'yeah...
  3. Jonathan Edwards

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

    It might be, but at least half the point of submitting this is to expose the BMJ editorial office to the arguments. I am not in favour of pussyfooting. Last time I sent in something about as critical it was published. Thee might be another wording. I will have a think.
  4. Jonathan Edwards

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

    Do be as critical as you can. I want it to be as crisp as possible, if I can get around to the sending process.
  5. Jonathan Edwards

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

    It's from the second reference in the text, which is Bastian. Maybe this is clearer: The international healthcare community needs to be aware of the implications of the statement made by Hilda Bastian (2025) on her blog, Absolutely Maybe, given as the title of this letter. Edit: It may confuse...
  6. 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.
  7. 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...
  8. 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...
  9. 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?
  10. 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?
  11. 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?
  12. 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...
  13. 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...
  14. 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.
  15. 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.
  16. 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?
  17. 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...
  18. 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...
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