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  1. Sasha

    DecodeME - UK ME/CFS DNA study underway

    It's TalkTalk.
  2. Sasha

    DecodeME - UK ME/CFS DNA study underway

    Thanks but don't want to provide the email address I registered with. But if I haven't got a message yet, I suspect others won't have - might be worth checking if a chunk of people have been missed off.
  3. Sasha

    DecodeME - UK ME/CFS DNA study underway

    Still nothing, three and a half hours in...
  4. Sasha

    DecodeME - UK ME/CFS DNA study underway

    Still nothing for me...
  5. Sasha

    DecodeME - UK ME/CFS DNA study underway

    I didn't receive anything yet and I only have one email address and there's nothing in my spam box. Should I be concerned?
  6. Sasha

    DecodeME - UK ME/CFS DNA study underway

    I just went to look at DecodeME's Twitter account and got a message reading, 'Caution: This account is temporarily restricted. You’re seeing this warning because there has been some unusual activity from this account. Do you still want to view it?' Is there a problem, @Andy ?
  7. Sasha

    Why is ME/CFS getting so little research funding?

    Thanks - that doesn't seem to be about pre-onset, though. I'm not clear about the advantages of looking pre-onset, however!
  8. Sasha

    Why is ME/CFS getting so little research funding?

    Thanks, Trish - do you have details?
  9. Sasha

    Why is ME/CFS getting so little research funding?

    This pandemic would seem to offer a golden, if horrible opportunity to do this. What kind of pre-onset info would be helpful? Can we do anything to get such a study to happen?
  10. Sasha

    Why is ME/CFS getting so little research funding?

    Interesting analysis, @Michiel Tack, and well worth doing. I wonder if one issue, at least in the UK, is the BPS proponents' portrayal of PwME as people who issue death threats against researchers. That has been repeatedly in the national press in the UK. I'd like to hear the views of current...
  11. Sasha

    UK: Physios for ME

    Well done, @PhysiosforME - really appreciate your great work on this.
  12. Sasha

    The biology of coronavirus COVID-19 - including research and treatments

    They judge exposure by how many of the placebo people got the virus.
  13. Sasha

    Turning the Remote Access Revolution into Reasonable Adjustments [Guidance on videoconferencing]

    I would like to see videoconferencing as a standard, presumptive offer to people applying for PIP and ESA. I don't see why disabled people should be dragged across town for a physical ordeal as part of their assessment.
  14. Sasha

    The biology of coronavirus COVID-19 - including research and treatments

    They would randomise them to either the placebo or active vaccine arm and the randomisation ought to have delivered equalish exposure to the virus.
  15. Sasha

    The biology of coronavirus COVID-19 - including research and treatments

    You can't ethically expose people to Covid so they just had to give people the real or placebo vaccine and let them live their lives.
  16. Sasha

    The biology of coronavirus COVID-19 - including research and treatments

    the 90% comes from comparing the number of placebo people who got Covid with the number of vaccine people who did.
  17. Sasha

    The biology of coronavirus COVID-19 - including research and treatments

    Has this possible study been mentioned - the COVID Human Genetic Effort? It sounds like the sort of thing we would all have wished to have had when we got sick with ME. https://www.nature.com/articles/d41586-020-02598-6
  18. Sasha

    UK: Physios for ME

    I really hope that people pay attention to you widely! I'm very concerned that we're going through a mass-ME event with Covid and that a lot of people's health is going to be avoidably and severely damaged in the long term by clinicians' attempts to 'rehabilitate' them out of it.
  19. Sasha

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    Anything we can collectively do to stop it playing out?
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