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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Interview with Maria Gjerpe: Chronically Engaged - Following Ritux One year on...

Discussion in 'General ME/CFS News' started by Firestormm, Mar 18, 2014.

  1. Firestormm

    Firestormm

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    From Tate Michell via Co-cure:

     
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  2. Simon

    Simon

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    Very interesting article, and great that Maria is doing so well. This struck a chord:
     
  3. Jesse2233

    Jesse2233 Senior Member

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    It seems 3 years later she is still in remission

     
  4. MEMum

    MEMum Senior Member

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    Prof Mella said that 11 of 18 of original responders are still in remission at IiME 2017
     
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  5. Solstice

    Solstice Senior Member

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    Is the ted talk itself relevant, or just that she's still in remission? Would be very good to hear tbh.
     
  6. MEMum

    MEMum Senior Member

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    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.
     
  7. Riley

    Riley Senior Member

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    Wow! Really? I don't think I've heard this before. That sounds amazing.
     
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  8. Jesse2233

    Jesse2233 Senior Member

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    They're on maintenance doses I'm assuming?
     
  9. Gingergrrl

    Gingergrrl Senior Member

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    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?
     
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  10. MEMum

    MEMum Senior Member

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    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
     
  11. Gingergrrl

    Gingergrrl Senior Member

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    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.
     
    Last edited: Jul 5, 2017
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