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Ritux and PEM

msf

Senior Member
Messages
3,650
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.
 

TrixieStix

Senior Member
Messages
539
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.
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:

msf

Senior Member
Messages
3,650
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?
 

TrixieStix

Senior Member
Messages
539
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.
i experience the exact same thing.