Search results

  1. S

    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.
  2. S

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

    Is there anyway that this can be retracted?? Anyone??
  3. S

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

    @dave30th please do something about this!!
  4. S

    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 still touting GET. Any suggestions???
  5. S

    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. I don't understand what you are implying.
  6. S

    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 totally inflated.
  7. S

    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.
  8. S

    Livestream: Ron Davis to speak at Columbia University

    So sorry. It's so awful.
  9. S

    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.
  10. S

    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 from illness onset which has continued is foul smelling sweat. Completely different to pre illness sweat. Really gross.. Toxic!! I've noticed change...
  11. S

    Livestream: Ron Davis to speak at Columbia University

    I missed what he said about suramin.. Does anyone recall?
  12. S

    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..
  13. S

    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 since 2016. I'd have thought that would be more worthwhile investigating than still looking for infections and pathogens. It seems obvious that it's...
  14. S

    Livestream: Ron Davis to speak at Columbia University

    Nothing new.. Still seem so far from anything that will help us
  15. S

    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.
  16. S

    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 things but sharing petitions on Facebook, I just can't bring myself to do it. It's all down to the stigma.
  17. S

    ME Action petition to Walter Koroshetz

    Worldwide.
  18. S

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

    Was it worth their while posting that. Give us 5 minutes at least!
  19. S

    ME Action petition to Walter Koroshetz

    I'd say a fairly non existent plan with nothing concrete or timely involved.
  20. S

    ME Action petition to Walter Koroshetz

Back
Top Bottom