New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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"Exercise Tests Suggest Autoimmunity..." Cort Johnson

Discussion in 'Latest ME/CFS Research' started by Diwi9, Aug 16, 2017.

  1. Gingergrrl

    Gingergrrl Senior Member

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    Interesting article but I didn't see the link to the Cell Trend autoantibodies. Is that part mentioned in the article? Sorry for my confusion!

    That would be amazing... and hopefully even sooner!

    Am quoting you b/c I am curious about the answer as well. I believe there is an autoimmune subset (as part of ME/CFS or something that will eventually be it's own disease entity) and within this subset, are people who have these autoantibodies, who also have POTS, and who are potential responders to Rituximab.
     
    Jesse2233 likes this.
  2. Badpack

    Badpack

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    My 2 cents to this, i got my antibodies checked at Celltrend, beta 1 and 2 positiv. Did a Rituximab trail and nothing changed for me. So even without those antibodies im still at a severe CFS state.
     
    ScottTriGuy and ivorin like this.
  3. manasi12

    manasi12

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    Did you try propranol with fludrocortisone? If will help to tolerate b blockers effectively.
     
  4. Gingergrrl

    Gingergrrl Senior Member

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    @Badpack I am so sorry to hear this! Did you do Rituximab in the US or at Kolibri (or somewhere else)? What were your main symptoms pre and post Ritux?

    I'm not sure who this is addressed to but I have done well with a beta blocker (Atenolol) for POTS since 2013 but I did not tolerate Florinef (fludrocortisone) whatsoever. It's interesting how different we all are.
     
    ScottTriGuy likes this.
  5. Badpack

    Badpack

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    Im from Germany and did it here. Main symptoms, well, brain fog, PEM, POTS, a lot of cardiac problems. 90% house bound, 50% bed bound. Cant go shopping for myself anymore sadly. And after Rituximab, nothing changed at all. Like really nothing at all. As if i have never done it. Not better nor worse. After this i tried Sirolimus because i thought maybe the T-cells are the main problem (blood tests showed a lot of T-memory cells) But after a month of 2mg daily i stoped, because again, nothing changed at all.
     
  6. drob31

    drob31 Senior Member

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    Can you tell me what treatments these are, for Lupus or for MCTD?
     
  7. TrixieStix

    TrixieStix Senior Member

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  8. drob31

    drob31 Senior Member

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  9. HelloHere

    HelloHere P.o.t.s, brugada,and now high Tsh or ME/CFS?

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    My own experience: inguinal hernia repairs (both side a year apart 2015+2016 ..3 months,in 2016, diagnosed with COPD. I work somewhat a lot ,coffee,nights...unsafe . During that time I m getting some symptoms ,I do take some inhalers and one or two times emergency because of heart palp. I remember a night heart pain got really bad, anyway third time I m having an EKG this EKG is a mess..hospital 4 days..BRUGADA type 3 (long QT/(SUDS). Ho...talking about viral or not....hey here r the news or no news .coincidence?: a month before these palpitations I had a flu+pneumonia shot.....well
     

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