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  1. Sasha

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

    Maybe they just need a bit longer to think about it, given the heat of the potato.
  2. Sasha

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

    The problem is not that it's outdated, though - this is the obscurantist reason that the editor-in-chief gave to not pull the review in the first place. It allowed her to avoid saying it was rubbish. Something that is merely 'outdated' is fine. My sofa is outdated but I'm still sitting on it...
  3. Sasha

    Placebo effect discussion thread

    Feeling better, yes, but didn't they report being in remission? I interpreted that as meaning they felt as though they had recovered. It would be interesting to have more detail about this.
  4. Sasha

    Placebo effect discussion thread

    On another thread, we were discussing a guy who might be a 'Rosseta stone' ME/CFS patient: Such patients may be hard to find, and hard to catch at the moment they flip, but what if Dr Fluge is Rosetta-stone-producing doctor? What if he's such a brilliant generator of powerful placebo effects...
  5. Sasha

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

    On the thread that has now split from this one, we've been talking about the great difficulty, expense and time that would be involved in getting bone-marrow samples to follow this up. But maybe another approach could be just to try out a treatment, if that's appropriate. If the finding was...
  6. Sasha

    Could bone marrow studies be useful?

    I think DecodeME only cost £3.2m, which is peanuts in the grand scheme of things. The UK government blew £5m on PACE, which was utterly without merit. RECOVER spend $US 1bn without finding anything. If this is an important study, I think the money should be spent, if a strong case can be made.
  7. Sasha

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

    I couldn't care less. The 2019 Larun review should never have been published, and once it was, and criticism make it clear how bad it was, it should have been immediately taken down. The new review has just distracted attention from this stinking review being left in place, with all its...
  8. Sasha

    Could bone marrow studies be useful?

    I'm going to have one last go. This says that that bone marrow is usually taken from the hip. What about PwME going under anaesthetic for hip surgery, such as hip replacement? Or indeed general anaesthetic for anything? Or would the pain or infection risk after taking samples be significant?
  9. Sasha

    Could bone marrow studies be useful?

    Could bone-marrow sampling be done as part of organ donation when a PwME has passed away? The MEA has an information leaflet about organ donation, though it says that only about 1 in 100 people die in circumstances that would allow organ donation. Or could a single bone marrow sample taken from...
  10. Sasha

    Could bone marrow studies be useful?

    Does that mean 50 PwME and 50 control people? (I'm not sure if you're talking about people here or some bit of people's biology). What disease would a PwME have to have to have ten bone marrow samples as part of the investigation/treatment? Is there such a thing? If so, can we glom onto the...
  11. Sasha

    Placebo effect discussion thread

    Fat chance there, I'm afraid! I'll be at the front of the queue once people start handing out massive placebos, though.
  12. Sasha

    Placebo effect discussion thread

    I find a six-month placebo effect a very weird concept in ME/CFS, if it's merely based on expectation. If a PwME suddenly feels better without any change in their biology, I don't see how they can possibly become and remain more active - as they would, if they felt better - without having a...
  13. Sasha

    Placebo effect discussion thread

    If you click on the arrow next to his name above the quote-box, it will take you to his post on that thread (I only learned that trick this week!).
  14. Sasha

    Placebo effect discussion thread

    Merged thread I would like a large placebo effect. Why can't I get one? In another thread, @Jonathan Edwards said: I try new things endlessly, if they seem likely to be harmless and might have some beneficial effect. But nothing moves the needle. Where is my placebo effect? If I wanted to...
  15. Sasha

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

    I still think the title is maybe too cryptic. I take your point about 'been there, done that' but how about something like, 'Is this the final nail in Cochrane's coffin?' That would get me reading, even if I was jaded about Cochrane. And asking a question is always a good way to pull in readers.
  16. Sasha

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

    I still read that in a way that doesn't make your case - I read it as, 'would legitimately have explained their actions if Cochrane had thought to put it forward, so they're off the hook'. I don't see any mention of Hilda Bastian's bereavement in the Wise piece - does it need to be raised? The...
  17. Sasha

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

    My concern is that when people read websites or magazines, they skim, and if your title doesn't summarise what you say in your letter, a huge proportion of the readership is unlikely to ever get the message - they'll simply skip over your letter and keep going. It's the nature of how people read...
  18. Sasha

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

    Thank you, @Jonathan Edwards, that's excellent. I don't know if you want comments, but I was a bit confused about the title, because I didn't know who was being quoted (I see it's from the BMJ Wise article announcing the scandal, your second reference). If your letter isn't something that would...
  19. Sasha

    ME severity scales - discussion

    @Jonathan Edwards - Is there any kind of standardisation across different diseases in terms of what gets classed as 'mild', 'moderate' and 'severe'? The ME/CFS scales seem to be so out of whack.
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