Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Treatment at OMI

Discussion in 'ME/CFS Doctors' started by Ninan, Nov 14, 2016.

  1. Ninan

    Ninan Senior Member

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    Does anyone her know (or know where to find information about) how the OMI institute treats severe (the most severe) cases of ME?
     
    Last edited by a moderator: Nov 14, 2016
  2. Hip

    Hip Senior Member

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    Yes, at the Open Medicine Institute you have people like Dr Kogelnik who treats patients. At the Open Medicine Foundation they research into neuro-immune diseases, with particular current focus on ME/CFS.

    You'd think knowing that ME/CFS patients suffer from brain fog, they would not choose such confusingly similar names!
     
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  3. Mary

    Mary Senior Member

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    @funkyqueen was given rituximab at OMI - I think it helped her initially and then stopped helping. (http://forums.phoenixrising.me/index.php?threads/my-rituximab-experience-for-me.38239/)

    Actually, I think what happened was she unable to continue treatment where she lives, the above thread is rather long and goes into more detail.

    @Gingergrrl also has been to OMI. She is very ill, though she may not have ME/CFS. I believe she's currently taking a break from the board but hopefully will return and you could ask her about her experience.

    I'd consider myself medium sick - not bedridden, and not extreme POTS or OI, but my life is seriously disrupted - I can't work and am quite limited in my daily activities. I went to OMI, they did a lot of testing but were unable to help me.

    So I think it's a mixed bag, depending on your symptoms, etc.
     
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  4. IreneF

    IreneF Senior Member

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    I had rtx at OMI. Remission was brief.

    CFS/ME has no cure, and very limited treatments. Still.
     
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  5. Ninan

    Ninan Senior Member

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    Thanks @Mary and @IreneF

    Did you get to continue rituximab, IreneF? Still stopped working?
     

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