Discussion in 'General ME/CFS News' started by Firestormm, Mar 18, 2014.
From Tate Michell via Co-cure:
Very interesting article, and great that Maria is doing so well. This struck a chord:
It seems 3 years later she is still in remission
Prof Mella said that 11 of 18 of original responders are still in remission at IiME 2017
Is the ted talk itself relevant, or just that she's still in remission? Would be very good to hear tbh.
Yes it talks about her treatment for an 'invisible disease'; her crowdfunding appeal to raise money for the multicentre trial and names her disease as ME towards the end. Easy listening and well worth it if you have the energy.
Wow! Really? I don't think I've heard this before. That sounds amazing.
They're on maintenance doses I'm assuming?
Do you (or anyone?) know if these are the same study subjects who are in the Fluge & Mella 2016 article (with 12 authors total) from the Journal "Brain, Behavior and Immunity" who were positive for the Cell Trend autoantibodies prior to Ritux?
Hi guys, sorry I should probably have used the word responding rather than remission.
He said there are gradual recurrences.
I do not know what they do re top ups, I THINK some may get Cyclophosphamide, as he said that out of 40 on Cyclo ME trial, 15 were patients from previous studies and 25 had had no previous TT. He also commented that for people who had responded to Ritux, their response to Cyclo was equivalent.
@Gingergrrl, I'll have to look later today re their 2016 trial, but I'm not sure that I have enough info to answer that question.
They are finding it very hard to "give patients their lives back" and then not be able to give them more rituximab outside the trial setting. I GUESS it is possible that some who have responded well to Ritux MAY get it privately as it is available in Norway. Prof Mella did NOT say this and he has strongly discouraged people from going the private route.
How he feels about this for people who have responded well I do not know
No worries! My guess is that it is the same people from that study but I do not know for sure.
I had assumed that the responders from the study who were already in Norway would be able to get additional Ritux from Kolibri. Do you know why Professor Mella would strongly discourage people from doing this? I find this surprising and if someone already tolerated Ritux and was a responder, why would they be denied further treatment?!! I believe you- I just don't quite understand the reasons behind it.
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