Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Ritux and PEM

Discussion in 'Rituximab: News and Research' started by msf, Aug 31, 2017.

  1. msf

    msf Senior Member

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    I apologise if this has been covered before; I don´t visit this sub-forum much, and a quick search did not turn up anything.

    So, do we have any personal accounts of Ritux curing PEM? I can see how it might ameliorate it (and this must surely be part of the general improvement seen in the Ritux trials), but has anyone been able to regularly exercise as a healthy person might without any PEM?

    I´m curious for two reasons: one, if it is true it would force me to think again about PEM, and two, PEM is pretty much my only remaining symptom, so I would like to know if Ritux is likely to help people like me.
     
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  2. TrixieStix

    TrixieStix Senior Member

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    So far 2 clinical trials have shown that Rituximab puts a % of ME/CFS patients into remission, a % of patients get improvement but not remission and another % of patients see no improvement. I believe this was broken down into 1/3 remission, 1/3 some improvement & 1/3 no improvement. As for helping PEM, I think that it's implied that "remission" and "symptom improvement" refer to all ME/CFS symptoms including PEM.

    We will know more sometime next year (hopefully by June) when the stage 3 clinical trial in Norway publishes it's results. It could be great news, ok news or bad news. Hoping for good news!
     
    Last edited: Aug 31, 2017
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  3. msf

    msf Senior Member

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    Yeah, I was aware of all that. I was hoping for personal accounts to see whether anyone was truly in remission, or whether a degree of PEM remains.

    Does anyone know if Fluge and Mella are going to measure PEM in any of their Ritux trials?
     
  4. Mij

    Mij Senior Member

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    What exactly is the mechanism of PEM , that's the question.

    Some of us get immediate PEM while others is delayed. I got both and I can tell you the delayed is different.
     
  5. TrixieStix

    TrixieStix Senior Member

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    i experience the exact same thing.
     
  6. Matthew Jones

    Matthew Jones Senior Member

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    I think of CFS as a kind of permanent PEM. Just existing takes energy and there isn't enough so we are always trying to recover just from sitting still doing nothing.
     
    ErdemX and Joh like this.

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