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  1. Sasha

    UK: #JusticeforME fundraising for legal case for UK Government to provide specialist ME/CFS medical care

    @Jonathan Edwards, did you have any luck in making contact? I'd also like to see our charities stepping up.
  2. Sasha

    UK: #JusticeforME fundraising for legal case for UK Government to provide specialist ME/CFS medical care

    That's not a good sign. They're a conduit to them, though, presumably, if anyone wants to get in touch.
  3. Sasha

    UK: #JusticeforME fundraising for legal case for UK Government to provide specialist ME/CFS medical care

    Has anyone been in touch with them about concerns about what they're asking for? Even on social media?
  4. Sasha

    Article:16 cinnamon brands to avoid after high levels of lead found in spice blends

    Consumer Reports have just brought out a report about how plant protein powders have high levels of lead but there seems to be some pushback, like here, including criticism of Consumer Reports in general. I don't have the mental bandwidth to go through it but I'd be interested to know what other...
  5. Sasha

    MRC/NIHR DecodeME Showcase meeting online and in person Nov 6th

    This is fantastic news and just shows what a crazily bad job of comms has been done in alerting interested people to this meeting.
  6. Sasha

    MRC/NIHR DecodeME Showcase meeting online and in person Nov 6th

    Just alerting @Jonathan Edwards, because I have no idea!
  7. Sasha

    United Kingdom: News from Forward-ME Group

    I hope they get a new logo! I've never seen a worse one.
  8. Sasha

    MRC/NIHR DecodeME Showcase meeting online and in person Nov 6th

    Can anyone reach out to everyone who ought to be invited? (I'm assuming it's not that big a field and that everyone is connected!
  9. Sasha

    MRC/NIHR DecodeME Showcase meeting online and in person Nov 6th

    I just got a virtual ticket. Anybody else?
  10. Sasha

    MRC/NIHR DecodeME Showcase meeting online and in person Nov 6th

    It says on there that tickets are running out so anyone who wants to go should crack on and sign up!
  11. Sasha

    Review COVID-19 is "Airborne AIDS": Provocative oversimplification, emerging science, or something in between? Salamon, Pretorius et al, 2025

    But I'm not following it! There's way too much of it and I don't have the time or the mental bandwidth to follow it. I'm not suggesting that the forum puts something together - rather, given that this is an issue of global importance and society is awash with ignorance and misinformation about...
  12. Sasha

    Review COVID-19 is "Airborne AIDS": Provocative oversimplification, emerging science, or something in between? Salamon, Pretorius et al, 2025

    But even knowing the range of uncertainty would be helpful. The alternative is to have one's opinion and understanding just flapping in the breeze of the latest opinion on the internet.
  13. Sasha

    Review COVID-19 is "Airborne AIDS": Provocative oversimplification, emerging science, or something in between? Salamon, Pretorius et al, 2025

    We don't summarise what's known, though - we have multiple threads. some hundreds of posts long, discussing the ins and outs of the research - I can't possibly keep up and and it's way over my head. I'd like to know everything that a lay person who doesn't know anything would like to know! So...
  14. Sasha

    Review COVID-19 is "Airborne AIDS": Provocative oversimplification, emerging science, or something in between? Salamon, Pretorius et al, 2025

    I find it very hard to find out what the current and scientifically reliable view of Covid is at present. No one seems to be responsible for providing any kind of update of current knowledge, particularly one that would be accessible to the lay person - including the lay people who make up our...
  15. Sasha

    United Kingdom: Action for ME's PRIME project - research infrastructure

    Yes, he did, which surprised me and also made me very happy - it would be real hands-on, lets-get-on-with-it stuff.
  16. Sasha

    United Kingdom: Action for ME's PRIME project - research infrastructure

    It's a very good interview, well worth a listen - thanks for posting, @ellesa, and thanks for doing it, @dave30th!
  17. Sasha

    Norwegian Fluge & Mella daratumumab Haukeland trial 'ResetME' now accepting international donations

    Great that you're willing to do some fundraising, @josepdelafuente! I was indeed mugging up on immunology but that's on pause. Meanwhile, though, I'd check what experts here on the forum say about that document - unless it's been checked by Fluge/Mella, I wouldn't necessarily trust the account...
  18. Sasha

    United Kingdom: Action for ME (AfME) news

    Can anyone tell from that what Our Future Health actually does?
  19. Sasha

    Pacing - different meanings of the term pacing in ME/CFS and other conditions, and the problems this causes.

    Didn't we all have a bit of a go-around on this on the PEM factsheet? We were discussing how PEM was a poor term, given that people here were saying that sensory stimuli and strong emotion gave them the exact same symptom pattern as PEM.
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