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  1. Sasha
    Post

    DecodeME - UK ME/CFS DNA study underway

    Just bumping this, which is on at 4pm this afternoon.
    Post by: Sasha, Nov 11, 2021 in forum: ME/CFS research news
  2. Sasha
    Post

    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...
    Post by: Sasha, Oct 29, 2021 in forum: Advocacy Projects and Campaigns
  3. Sasha
    Post

    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. :)
    Post by: Sasha, Oct 29, 2021 in forum: Advocacy Projects and Campaigns
  4. Sasha
    Post

    Improving images used to depict ME/CFS

    But that would only be useful if we knew what tags photo editors would use to search.
    Post by: Sasha, Oct 29, 2021 in forum: Advocacy Projects and Campaigns
  5. Sasha
    Post

    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...
    Post by: Sasha, Oct 29, 2021 in forum: Advocacy Projects and Campaigns
  6. Sasha
    Post

    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...
    Post by: Sasha, Oct 29, 2021 in forum: Advocacy Projects and Campaigns
  7. Sasha
    Post

    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...
    Post by: Sasha, Oct 29, 2021 in forum: Advocacy Projects and Campaigns
  8. Sasha
    Post

    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.
    Post by: Sasha, Oct 27, 2021 in forum: UK clinics and doctors
  9. Sasha
    Post

    Persistent clotting protein pathology in Long COVID/PASC is accompanied by increased levels of antiplasmin, 2021, Pretorius et al

    Isn't apheresis a treatment that you have to have repeatedly?
    Post by: Sasha, Oct 23, 2021 in forum: Long Covid research
  10. Sasha
    Post

    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...
    Post by: Sasha, Oct 15, 2021 in forum: Home adaptations, mobility and personal care
  11. Sasha
    Post

    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...
    Post by: Sasha, Oct 15, 2021 in forum: Home adaptations, mobility and personal care
  12. Sasha
    Post

    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...
    Post by: Sasha, Oct 15, 2021 in forum: Home adaptations, mobility and personal care
  13. Sasha
    Post

    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.
    Post by: Sasha, Oct 15, 2021 in forum: Home adaptations, mobility and personal care
  14. Sasha
    Post

    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...
    Post by: Sasha, Oct 15, 2021 in forum: Home adaptations, mobility and personal care
  15. Sasha
    Post

    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...
    Post by: Sasha, Oct 13, 2021 in forum: Home adaptations, mobility and personal care
  16. Sasha
    Post

    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...
    Post by: Sasha, Oct 12, 2021 in forum: Home adaptations, mobility and personal care
  17. Sasha
    Thread

    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....
    Thread by: Sasha, Oct 12, 2021, 36 replies, in forum: Home adaptations, mobility and personal care
  18. Sasha
    Post

    Migraine treatments

    I've seen Goadsby on TV talking about the awful sexism that has led to the neglect of migraines. Very impressive.
    Post by: Sasha, Oct 10, 2021 in forum: Drug and supplement treatments
  19. Sasha
    Post

    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...
    Post by: Sasha, Oct 1, 2021 in forum: Epidemics (including Covid-19, not Long Covid)
  20. Sasha
    Post

    What are the best coronavirus masks?

    Where should people look for these? Amazon, etc.?
    Post by: Sasha, Oct 1, 2021 in forum: Epidemics (including Covid-19, not Long Covid)
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