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  1. Sasha

    Video: How dietitians and the wider MDT can help people with ME/CFS, Helen Baxter of The 25% ME Group

    This is just horrific. Is there no one fighting this in the literature, or in the training that physicians receive? I can't understand how this madness is going unchallenged. The human cost is huge. Thank you. We desperately need to come up with something that will guarantee proper support for...
  2. Sasha

    Video: How dietitians and the wider MDT can help people with ME/CFS, Helen Baxter of The 25% ME Group

    Thanks for posting this, @Yvonne - I just watched it, and it's what I'd want any dietician dealing with me to watch, if I got into nutrition difficulties. I expect you've seen it, @Jonathan Edwards? The big sticking point (as discussed in the video) seems to be avoiding being treated as though...
  3. Sasha

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    It's just amazing how there's no kind of not-marking-your-own-homework ethical enforcement authority to appeal to in this situation.
  4. Sasha

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    That's extremely disappointing. I wonder if he'd be open to arguments about quality.
  5. Sasha

    Podcast: Long COVID: Current research on risk factors, pathophysiology, and emerging treatments

    Thanks for posting that, @SNT Gatchaman. I just listened to it and it was fascinating. But as usual, I don't know how much of it was well-founded! Is Long Covid now accepted as an ongoing Covid infection hidden away in the body? If it is, does it always show up on inflammation markers? Would...
  6. Sasha

    UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

    Thank **** for that. How can we avert the potential fresh hell arising from this? I'm not able to read the report. Does it distinguish responses from patients and patients' charities from those from BPS proponents? So that it's clear that it's not patients calling for more psychological...
  7. Sasha

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    This is outrageous, as a policy. People conduct coordinated campaigns when people in power perpetrate a major injustice and then refuse to answer to criticism. A pre-emptive policy refusing to respond to their complaints is just another two fingers up to the powerless. I don't see why we...
  8. Sasha

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    I think we've found our t-shirt slogan.
  9. Sasha

    Unfavourable glucose metabolism is associated with functional somatic disorders. A cross-sectional general population-based study: 2024 Dantoft, Fink+

    In case it's even faintly relevant, after two viral infections over the last few years that were both probably Covid, I had for the first infection a single evening of desperate thirst, desperate water-drinking and half-hourly peeing that had all simply gone away by the time I got up the next...
  10. Sasha

    United Kingdom: ME Association news

    What sick person wants a Christmas card depicting a sick person looking miserable at Christmas?
  11. Sasha

    Is there a treatment for bruxism (teeth grinding)?

    Wouldn't that be weird, though? Maybe my case is odd but I can't properly relax my jaw during the day. If I try to relax it, other muscles in the jaw seem to get tense, and if I try to relax those, the ones I just relaxed get tense again, like a yoyo. I can't help but think that if I could relax...
  12. Sasha

    JK Rowling new book — chronic illness references

    I'm positive that a lot of what makes S4ME a safe place is the hard work of the mods. I'm constantly grateful for it.
  13. Sasha

    JK Rowling new book — chronic illness references

    AFAIK, authors license a TV company to use their work and that's an end of their involvement.
  14. Sasha

    Is there a treatment for bruxism (teeth grinding)?

    Any exercises that work? I'm seeing some stuff on YouTube but hard to know what is well founded...
  15. Sasha

    Is there a treatment for bruxism (teeth grinding)?

    I think I'm grinding my teeth at night but the only advice I can find online for stopping it is to become less stressed. Is that it?
  16. Sasha

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    I wonder if it would be worth writing to Susan Philips not to complain, but to point out the collapse in faith in Cochrane on the part of PwME and express our disappointment. The point would be to reach someone who might care, without risking their secretary just binning the email because it...
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