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  1. Gingergrrl
    Post

    Immunoadsorption to remove ß2 adrenergic receptor antibodies in Chronic Fatigue Syndrome CFS/ME (2018) Scheibenbogen et al

    I know that access to testing is a major issue but even without testing, I haven't found many people on PR or S4ME that match my set of symptoms....
    Post by: Gingergrrl, Apr 16, 2018 in forum: ME/CFS research
  2. Gingergrrl
    Post

    Immunoadsorption to remove ß2 adrenergic receptor antibodies in Chronic Fatigue Syndrome CFS/ME (2018) Scheibenbogen et al

    @Pibee Sorry I missed your post and didn't get tagged b/c I spell my avatar "gingergrrl" with two R's. I just looked at my Cell Trend results to...
    Post by: Gingergrrl, Apr 16, 2018 in forum: ME/CFS research
  3. Gingergrrl
    Post

    Epstein-Barr virus protein can “switch on” risk genes for autoimmune diseases

    Both of my doctors believe there is a very good chance that EBV (which I somehow managed to avoid until age 41 when I got mono) is responsible for...
    Post by: Gingergrrl, Apr 16, 2018 in forum: Other health news and research
  4. Gingergrrl
    Post

    Weds 11 April, 2pm | One-minute silence in memory of 'Bob' - Robert Courtney

    @Sasha Is the moment of silence on the 10th (today) like this thread title or the 11th (tomorrow) which I'd read in another post? Can you clarify?
    Post by: Gingergrrl, Apr 10, 2018 in forum: General ME/CFS news
  5. Gingergrrl
    Post

    Immunoadsorption to remove ß2 adrenergic receptor antibodies in Chronic Fatigue Syndrome CFS/ME (2018) Scheibenbogen et al

    Thank you and I appreciate you saying that. I don't want to take this thread off track but I think this is all okay since it is about...
    Post by: Gingergrrl, Apr 10, 2018 in forum: ME/CFS research
  6. Gingergrrl
    Post

    Immunoadsorption to remove ß2 adrenergic receptor antibodies in Chronic Fatigue Syndrome CFS/ME (2018) Scheibenbogen et al

    Thank you for your detailed answer and I really am trying to understand all of this! I think someone like me could end up in a study like Dr....
    Post by: Gingergrrl, Apr 10, 2018 in forum: ME/CFS research
  7. Gingergrrl
    Post

    Immunoadsorption to remove ß2 adrenergic receptor antibodies in Chronic Fatigue Syndrome CFS/ME (2018) Scheibenbogen et al

    I think I didn't explain it well but I think we are saying the same thing. In your scenario #1, there turns out to be an autoimmune sub-group...
    Post by: Gingergrrl, Apr 8, 2018 in forum: ME/CFS research
  8. Gingergrrl
    Post

    Immunoadsorption to remove ß2 adrenergic receptor antibodies in Chronic Fatigue Syndrome CFS/ME (2018) Scheibenbogen et al

    I wanted to clarify that I didn't think that you personally were saying this vs. it that three Neuros told me in 2016 when we discovered I had the...
    Post by: Gingergrrl, Apr 8, 2018 in forum: ME/CFS research
  9. Gingergrrl
    Post

    Immunoadsorption to remove ß2 adrenergic receptor antibodies in Chronic Fatigue Syndrome CFS/ME (2018) Scheibenbogen et al

    Hi @Pibee, we've been discussing this on the other board but you brought up some really good points here (and I know many people no longer read...
    Post by: Gingergrrl, Apr 8, 2018 in forum: ME/CFS research
  10. Gingergrrl
    Post

    Immunoadsorption to remove ß2 adrenergic receptor antibodies in Chronic Fatigue Syndrome CFS/ME (2018) Scheibenbogen et al

    Yes, thank you Luther for taking the time to explain all of that! I appreciate it.
    Post by: Gingergrrl, Apr 6, 2018 in forum: ME/CFS research
  11. Gingergrrl
    Post

    Immunoadsorption to remove ß2 adrenergic receptor antibodies in Chronic Fatigue Syndrome CFS/ME (2018) Scheibenbogen et al

    I really, truly hope that she does keep looking and I believe there is a group of people with autoantibodies causing all kinds of unexplained...
    Post by: Gingergrrl, Apr 6, 2018 in forum: ME/CFS research
  12. Gingergrrl
    Post

    Immunoadsorption to remove ß2 adrenergic receptor antibodies in Chronic Fatigue Syndrome CFS/ME (2018) Scheibenbogen et al

    Thanks @MErmaid for saying that you enjoy reading my posts but I am not sure what you mean re: the silent majority not posting? I didn't post on...
    Post by: Gingergrrl, Apr 5, 2018 in forum: ME/CFS research
  13. Gingergrrl
    Post

    Immunoadsorption to remove ß2 adrenergic receptor antibodies in Chronic Fatigue Syndrome CFS/ME (2018) Scheibenbogen et al

    I guess we have to agree to disagree on this one! Also, to clarify, I didn't mean that there were four categories of research vs. that I was just...
    Post by: Gingergrrl, Apr 5, 2018 in forum: ME/CFS research
  14. Gingergrrl
    Post

    Intense 24/7 muscular weakness and fatigue anyone ?

    Sorry if stupid question, but is a SFEMG always done above and below the eye or would it depend which body part they were testing? If they were...
    Post by: Gingergrrl, Apr 3, 2018 in forum: General and other signs and symptoms
  15. Gingergrrl
    Post

    Immunoadsorption to remove ß2 adrenergic receptor antibodies in Chronic Fatigue Syndrome CFS/ME (2018) Scheibenbogen et al

    Absolutely nothing you said was disparaging and I did not take it that way at all and always enjoy reading your posts. I am still learning a lot...
    Post by: Gingergrrl, Apr 3, 2018 in forum: ME/CFS research
  16. Gingergrrl
    Post

    Immunoadsorption to remove ß2 adrenergic receptor antibodies in Chronic Fatigue Syndrome CFS/ME (2018) Scheibenbogen et al

    I think this is exactly what is frustrating to me b/c if we were just talking about a single study, then I understand saying that one particular...
    Post by: Gingergrrl, Apr 3, 2018 in forum: ME/CFS research
  17. Gingergrrl
    Post

    Intense 24/7 muscular weakness and fatigue anyone ?

    Hi Ryan, I know you are asking Dechi, but wanted to also reply in case it is helpful. When I had an EMG (to rule out LEMS), the Neuro was not...
    Post by: Gingergrrl, Apr 3, 2018 in forum: General and other signs and symptoms
  18. Gingergrrl
    Post

    Immunoadsorption to remove ß2 adrenergic receptor antibodies in Chronic Fatigue Syndrome CFS/ME (2018) Scheibenbogen et al

    This is my feeling as well, that there are distinct subgroups, and these researchers are working hard to figure it all out. They have to start...
    Post by: Gingergrrl, Apr 3, 2018 in forum: ME/CFS research
  19. Gingergrrl
    Post

    Intense 24/7 muscular weakness and fatigue anyone ?

    @Dechi, I know it may be impossible to get these tests in Canada but I would get tested for the Myasthenia Gravis and MuSK autoantibodies and the...
    Post by: Gingergrrl, Apr 3, 2018 in forum: General and other signs and symptoms
  20. Gingergrrl
    Post

    Immunoadsorption to remove ß2 adrenergic receptor antibodies in Chronic Fatigue Syndrome CFS/ME (2018) Scheibenbogen et al

    I actually posted about Dr. Scheibenbogen's research on the other board tonight (great minds think alike @Mattie) but I am not sure why it is...
    Post by: Gingergrrl, Apr 2, 2018 in forum: ME/CFS research
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