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  1. Ariel

    Criticisms of DecodeME in the media - and responses to the criticisms

    The reality is that he has kept changing what he is saying over the years - and claiming that this is what he was saying all along, when this is not the case. And you see the same pattern, over again. His "views" are a moving target, both currently and in the ever-changing re-telling of the...
  2. Ariel

    Criticisms of DecodeME in the media - and responses to the criticisms

    Just came across like moving the goalposts (yet again) to me.
  3. Ariel

    Criticisms of DecodeME in the media - and responses to the criticisms

    I am reading the Wessely quotes. Why give him a platform to spout unscientific theories and nonsense in this context? From the piece: "Sir Simon Wessely, a professor of psychological medicine at King's College London told Newsweek that there is already "ample evidence that ME/CFS is not the...
  4. Ariel

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    Re: diagnostic criteria and the different cohorts they generate in studies: I am too unwell to look at the preprint in detail at the moment but was hoping someone would know. I remember the samples were taken in two phases with separate ones taken at a later stage possibly on slightly...
  5. Ariel

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    Did they test the remaining 10, 000 (known) virally-triggered ME/CFS samples and still find the association in these samples without the other 5,000? I think you would have to know that?
  6. Ariel

    Criticisms of DecodeME in the media - and responses to the criticisms

    The is not accurate and Reuters should print a correction; particularly bad from a news agency. Is anyone up to contacting them?
  7. Ariel

    Criticisms of DecodeME in the media - and responses to the criticisms

    Wish more had changed in these times :(
  8. Ariel

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    Does anyone have any examples of other kinds of percentage differences for signals in other diseases to compare? It's hard to think about without this context.
  9. Ariel

    Criticisms of DecodeME in the media - and responses to the criticisms

    Can always be both biased and scientifically illiterate. You don't have to pick one explanation! :)
  10. Ariel

    DecodeME in the media

    Sorry to sound incompetent but how do we find that? Does anyone have a link? (Am in UK) ETA: Gah! Thanks @Fainbrog
  11. Ariel

    Closed UK: DecodeME updates, was recruitment thread.

    same at the moment. i have just had a deterioration and am having difficulty being here. hugs xoxo no more TV etc for me xx will think of you in solidarity laying in bed with something over face doing nothing xx
  12. Ariel

    Closed UK: DecodeME updates, was recruitment thread.

    Just wondering if there is a reason for the 7pm embargo with all the talk of time zones etc. 7pm an odd time to lift an embargo? Am more used to midnight and early morning ones. Curious as to the rationale. Anyway, hope to be on here with everyone :)
  13. Ariel

    Isla Kidd and her family

    I wonder what the relevant legislation is. Seems like a human rights violation but I don't know if we have strong protections. Can you appeal to the equality act in this situation? I realize all of that takes money for lawyers and so on that people do not have. The state would have to insist...
  14. Ariel

    Closed UK: DecodeME updates, was recruitment thread.

    Looking forward to this. Thanks to everyone who has been working on it.
  15. Ariel

    Isla Kidd and her family

    Is there any legal recourse for these cases? ME/CFS is a documented illness and we have the NICE guideline. I am very worried about the children, too; what are they supposed to do? Is it possible to legally protect them from the state's failure to recognize their disability and health...
  16. Ariel

    Review Causes of symptoms and symptom persistence in long COVID and myalgic encephalomyelitis/chronic fatigue syndrome, 2025, Komaroff et al.

    Yes, I remember that discussion. But I don't remember a discussion or conclusion about the antivirals. Again I imagine it depends what you measure as "long covid". But still, it's interesting that this is being claimed and I was wondering if there was any evidence for it.
  17. Ariel

    Review Causes of symptoms and symptom persistence in long COVID and myalgic encephalomyelitis/chronic fatigue syndrome, 2025, Komaroff et al.

    "early antiviral treatment and vaccination against SARS-CoV-2 can reduce the risk of developing long COVID" (my bolding) Is this true? I haven't seen discussion or evidence about this.
  18. Ariel

    Watch out for the physio robots! - Guardian piece.

    Not sure what is going on in NHS physio appointments but there is nothing my (private) physio does that can be replaced by an app. It's all with his hands. Sure there are some unhelpful exercise suggestions every so often, but not for the sake of it. He is very good. though. (Have never been to...
  19. Ariel

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    In relation to the training modules, isn't it nonsense to have "training" on mild and moderate ME/CFS without training or knowledge of severe and very severe cases? And so everyone needs access to those modules at once; the training will not be complete as they would not understand the...
  20. Ariel

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Why would they restrict access to contents of the education module about severe and very severe patients? Does anyone know why they would do this? Are there other examples like this? :(
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