Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Discussion in 'Rituximab: News and Research' started by Jesse2233, Sep 6, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    I've deleted this post so that the person can tell their story in full at a later date
     
    Last edited: Sep 7, 2017
    merylg, MEMum, AdamS and 20 others like this.
  2. Cheesus

    Cheesus Senior Member

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    Google informs me that this is around 5 miles! That sounds absolutely epic.

    Obviously full recovery is the dream, but I can't even take a single step right now, so if I could get to walking 5 miles per day I would be elated.
     
  3. Murph

    Murph :)

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    Here's a link to an unconfirmed report of someone claiming they've been on rituximab 4 years, and says they started feeling better after around three years.



    If I'm translating right they say they can now read and write, chew and move in bed. They say it takes longer in people with severe me/cfs.

    (Of course, correlation is not causation. some severe patients improve a little without rituximab.)
     
    Last edited: Sep 6, 2017
  4. Jesse2233

    Jesse2233 Senior Member

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    @Murph

    Wait so they were on RTX infusions for 3 straight before seeing improvement? I'm surprised their doctor kept administering it
     
  5. Jesse2233

    Jesse2233 Senior Member

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    You had improvement from LDN and ART right? That's a good sign you can improve further
     
    MEMum likes this.
  6. Cheesus

    Cheesus Senior Member

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    LDN works well for me. Aggressive rest therapy worked once upon a time, but ever since I had my EPIC crash something about my condition fundamentally changed. Now aggressive rest just makes me more tired.

    Given my success with the LDN, I am starting a new therapy for immunomodulation this very day (helminthic therapy). I will keep you all informed.
     
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  7. Murph

    Murph :)

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    amazing if true, huh?

    I hope the doc generates a case report. If 3 years of ritux is effective for the severe cases then it might be doing something different than just removing antibodies.

    EDIT: They do seem to provide some confusing messages about the timeline, saying they improved after one year at one point and a week ago at another point. My spanish is not that great tho.
     
    Last edited: Sep 6, 2017
  8. Jesse2233

    Jesse2233 Senior Member

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    Interesting. If it was a year or several, the only thing I can think of is...

    a) partial spontaneous remission of symptoms or b) no autoantibodies long term allowed for slow CNS repair
     
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  9. Forbin

    Forbin Senior Member

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    c) restoration of gut barrier... ?
     
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  10. Jesse2233

    Jesse2233 Senior Member

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    Would it take that long?
     
  11. Murph

    Murph :)

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    There is one patient in the Fluge Mella trials who didn't respond til week 94.

    Screen Shot 2017-05-01 at 6.10.08 PM.png

    the same questions of cause and effect can be asked there, of course.
     
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  12. Forbin

    Forbin Senior Member

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    I don't know what starting point one would use to define "long." If the response has something to do with interrupting a vicious cycle long enough for healing of some kind to occur, maybe they were just not able to sustain that interruption long enough in the first three years. Perhaps they modified their infusion schedule in light of newer findings, and, so, healing (if there was healing) only began in the fourth year. There's just way too little info to do anything but make dubious speculations... like mine.:rolleyes:
     
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  13. Gingergrrl

    Gingergrrl Senior Member

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    I actually know the person you are referring to b/c it is someone I have communicated with via e-mail off & on for the past three years and their story is true. Obviously I cannot say more either without the person's permission but what you have written is correct.
     
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  14. Benji

    Benji Norwegian

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    Wow! Thanks for letting us know.
     
  15. Jesse2233

    Jesse2233 Senior Member

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    Oh man now I feel silly for emailing you about this. Glad to see you confirming their story though!
     
  16. Gingergrrl

    Gingergrrl Senior Member

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    Please do not feel silly at all and no way that you could know that I was in contact with this particular person! Apologies that I am slow to reply to e-mails right now (to you and others) but definitely plan to soon.
     
    Jesse2233 likes this.

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