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  1. Sasha

    DecodeME - UK ME/CFS DNA study underway

    Just bumping this, which is on at 4pm this afternoon.
  2. Sasha

    Improving images used to depict ME/CFS

    The right photos may already be in those repositories. I found quite a few for the Phoenix Rising project. We just don't understand the problem from the photo editors' point of view, and I think we need to do that before we do anything else. It's no good getting photos onto those stock...
  3. Sasha

    Improving images used to depict ME/CFS

    Yes! Looking back, I think we missed out on this first step of finding out how photo editors actually behave. :)
  4. Sasha

    Improving images used to depict ME/CFS

    But that would only be useful if we knew what tags photo editors would use to search.
  5. Sasha

    Improving images used to depict ME/CFS

    I don't think we know how we should tag our photos, because we don't know what photo editors are searching on. When you look at how they illustrate any health story, it's not disease-specific; it's generally just somebody in a hospital bed, or attached to a drip, or in a wheelchair, or whatever...
  6. Sasha

    Improving images used to depict ME/CFS

    These questions are why we need to find a photo editor! We can only speculate - they will actually know...
  7. Sasha

    Improving images used to depict ME/CFS

    I agree, the first step needs to be finding out how photo editors search for and use pix. I think we can produce all the great photos we want but if photo editors won't encounter them via the way they normally search, or those photos aren't what they need, those photos will have no effect. I...
  8. Sasha

    ME/CFS services in the United Kingdom

    This GAM is exactly GET. When I was instructed in GET at an NHS ME/CFS centre, I was told to first establish such a baseline and then grade up.
  9. Sasha

    Mattress toppers that don't make you too hot?

    I think that's all pretty reasonable, TBH, @JemPD! Thus far I've been hiding in other rooms for emergency visitors (plus with all the windows open, plus masks for everybody), or even leaving the flat entirely if someone has to be in all the rooms and there's nowhere for me to hide (as when the...
  10. Sasha

    Mattress toppers that don't make you too hot?

    Thanks, JemPD - actually, having now looked at reviews and info, I've decided against this type of topper for exactly those reasons! Back to square one. I'd like a latex topper but I don't see how I can get one - and I'd like to try one first but am still shielding from the coronavirus. I feel...
  11. Sasha

    Mattress toppers that don't make you too hot?

    Thanks, @Joel, that's really helpful. I think I might maybe get a goose/duck down topper, just because I think I can get it up the stairs. It might not last as long as a latex one but it's a question of what's possible!
  12. Sasha

    Mattress toppers that don't make you too hot?

    Thanks, @Wonko - I use flat sheets, and with my existing topper, they're not quite big enough.
  13. Sasha

    Mattress toppers that don't make you too hot?

    @Joel, would you say the latex topper is as soft as a memory foam one? I'm wondering whether to go for a 2" or 3" latex mattress for softness but the latter will obviously be more expensive. And heavier! I'm worried that a topper will be too heavy for me to get up the stairs.
  14. Sasha

    Mattress toppers that don't make you too hot?

    Just want to thank everyone for their great contributions so far! I'm wondering if repeated waking due to this problem is contributing to my unrefreshing sleep so this is an important thread for me. :)
  15. Sasha

    Mattress toppers that don't make you too hot?

    Thanks, @Andy - great recommendation! Sorry to hear about your struggles with body temp, @JemPD. I've had periods of my illness where my temperature control has gone out of whack, including in daytime, but it has stablised in recent years and I'm pretty sure this is a mattress-topper issue...
  16. Sasha

    Mattress toppers that don't make you too hot?

    I have a foam mattress topper and keep waking up in the night too hot, throwing quilts off, and then waking up too cold later, and on and on. Does anyone have experience with non-foam ones? Recommendations?
  17. Sasha

    Migraine treatments

    I've seen Goadsby on TV talking about the awful sexism that has led to the neglect of migraines. Very impressive.
  18. Sasha

    What are the best coronavirus masks?

    What certification should I be looking for, for a mask bought in the UK? I had a look on Amazon and some are 'CE' and others have some other kind of European certification.
  19. Sasha

    What are the best coronavirus masks?

    Where should people look for these? Amazon, etc.?
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