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  1. Sunshine3
    Post

    DecodeME - UK ME/CFS DNA study underway

    How long is this study going to take? Approximately? I haven't read all info as reading a problem for me.
    Post by: Sunshine3, Jun 23, 2020 in forum: ME/CFS research news
  2. Sunshine3
    Post

    MSD Manual (US): Chronic fatigue syndrome - updated Apr 2020 and Sept. 2021

    Is there anyway that this can be retracted?? Anyone??
    Post by: Sunshine3, May 3, 2020 in forum: General ME/CFS news
  3. Sunshine3
    Post

    MSD Manual (US): Chronic fatigue syndrome - updated Apr 2020 and Sept. 2021

    @dave30th please do something about this!!
    Post by: Sunshine3, May 3, 2020 in forum: General ME/CFS news
  4. Sunshine3
    Post

    Genetic and Rare Diseases Information Center: ME webpage

    How or who could we approach to get Mayo Clinic to update their website info on ME. It actually really upsets me as a severe patient that they are...
    Post by: Sunshine3, Apr 20, 2020 in forum: General Advocacy Discussions
  5. Sunshine3
    Post

    Final US Federal Budget Report: Victory! 6 Major Federal Wins for ME/CFS

    Why would he not act upon guidance from Congress? Is it an issue he has with our patient community or is there more congressional pressure needed....
    Post by: Sunshine3, Feb 4, 2020 in forum: General Advocacy Discussions
  6. Sunshine3
    Post

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    I just find it hard to believe there are 20,000 people in UK with real ME. But that's only my humble opinion. I know here in Ireland figures are...
    Post by: Sunshine3, Jan 18, 2020 in forum: ME/CFS research news
  7. Sunshine3
    Post

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    20,000 seems like an extraordinary high number. God knows what kind of Mish mash will get in.
    Post by: Sunshine3, Jan 18, 2020 in forum: ME/CFS research news
  8. Sunshine3
    Post

    Livestream: Ron Davis to speak at Columbia University

    So sorry. It's so awful.
    Post by: Sunshine3, Nov 26, 2019 in forum: ME/CFS research news
  9. Sunshine3
    Post

    Livestream: Ron Davis to speak at Columbia University

    Is there evidence of progressive ME... Where does it stop? Mine has been progressive from the start.
    Post by: Sunshine3, Nov 26, 2019 in forum: ME/CFS research news
  10. Sunshine3
    Post

    Abnormalities in the urine of people with ME/CFS? A clinician asks for feedback

    Yes I've noticed recently my pee stinks mostly in the morning. I've only noticed this recently as I've gotten even sicker. The one thing I noticed...
    Post by: Sunshine3, Nov 23, 2019 in forum: General ME/CFS news
  11. Sunshine3
    Post

    Livestream: Ron Davis to speak at Columbia University

    I missed what he said about suramin.. Does anyone recall?
    Post by: Sunshine3, Nov 21, 2019 in forum: ME/CFS research news
  12. Sunshine3
    Post

    Livestream: Ron Davis to speak at Columbia University

    Oh Jesus when he said that I lifted off the bed as I just sent them some of my life time savings yesterday..
    Post by: Sunshine3, Nov 21, 2019 in forum: ME/CFS research news
  13. Sunshine3
    Post

    Livestream: Ron Davis to speak at Columbia University

    Did anyone else listen in? I'm feeling frustrated after it! I don't even sense any urgency from Dr. Davis. The something in the blood is on the go...
    Post by: Sunshine3, Nov 21, 2019 in forum: ME/CFS research news
  14. Sunshine3
    Post

    Livestream: Ron Davis to speak at Columbia University

    Nothing new.. Still seem so far from anything that will help us
    Post by: Sunshine3, Nov 21, 2019 in forum: ME/CFS research news
  15. Sunshine3
    Post

    Video: Upright Activity and Exercise Intolerance: Critical Concepts in the Evaluation of Chronic Fatigue, Dr Lucinda Bateman, 2019

    Had, she passed away as far as I know.
    Post by: Sunshine3, Nov 2, 2019 in forum: ME/CFS research news
  16. Sunshine3
    Post

    ME Action petition to Walter Koroshetz

    Sharing on Facebook is something alot of us don't feel comfortable with. I can't do it as I get upset if it's ignored. I'm willing to do alot of...
    Post by: Sunshine3, Oct 31, 2019 in forum: Petitions
  17. Sunshine3
    Post

    ME Action petition to Walter Koroshetz

    Worldwide.
    Post by: Sunshine3, Oct 26, 2019 in forum: Petitions
  18. Sunshine3
    Post

    USA: Center for Solutions for ME/CFS - news and updates from Columbia University's NIH funded center

    Was it worth their while posting that. Give us 5 minutes at least!
    Post by: Sunshine3, Oct 26, 2019 in forum: News from organisations
  19. Sunshine3
    Post

    ME Action petition to Walter Koroshetz

    I'd say a fairly non existent plan with nothing concrete or timely involved.
    Post by: Sunshine3, Oct 21, 2019 in forum: Petitions
  20. Sunshine3
    Thread

    ME Action petition to Walter Koroshetz

    [MEDIA]
    Thread by: Sunshine3, Oct 21, 2019, 26 replies, in forum: Petitions
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