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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In Rare Disorder, Woman's Immune System Attacks Her Own Brain

Discussion in 'Other Health News and Research' started by antares4141, Dec 5, 2016.

  1. antares4141

    antares4141 Senior Member

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    Truth or consequences, nm
  2. wonderoushope

    wonderoushope Senior Member

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    She was lucky to get a good doctor who diagnosed her well. I could imagine if she went to the wrong specialists she would have been treated with a psychiatric condition for a long while.
     
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  3. Jon_Tradicionali

    Jon_Tradicionali Alone & Wandering

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    Zogor-Ndreaj, Shkodër, Albania
    "Doctors also need to remove all of the problematic antibodies from a person's blood. To do so, the woman in the case underwent plasmapheresis, a procedure to purify the blood, for five days, the doctors wrote. She was also given medications to suppress her immune system, in order to stop the production of more antibodies.

    The woman has fully recovered from the illness, the doctors noted in the report. "

    Appealing. A procedure which purifies the blood in 5 days.

    I'd like to see an ME/CFS patient try plasmapheresis. Especially after Fluge/Mella finding of "cause is in the blood".
     
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  4. antares4141

    antares4141 Senior Member

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    Truth or consequences, nm
    Sigh! Wouldn't it be nice if people responsible for public health frantically kept trying everything they could think of to try to unravel this puzzle?

    It's almost like they don't want to know.

    I call this phenomenon anti-feynman syndrome.
     
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  5. roller

    roller wiggle jiggle

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    thats the finding!
    i entirely agree.
     
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  6. barbc56

    barbc56 Senior Member

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    I think the author of Brain on Fire was eventually diagnosed with this. Unfortunately, it took time for her to get diagnosed.

    This woman was very very lucky, maybe because they found the teratoma.

    I would highly recommend reading Brain On Fire.
     
    Last edited: Dec 6, 2016
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  7. Humanrights

    Humanrights

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    antares4141 likes this.
  8. edawg81

    edawg81 Senior Member

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    Upstate, NY
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  9. Shawn

    Shawn Senior Member

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    Asia wide + UK
    I had a chronic low level version of it equally debilitating just in a different way ,not sure if it's due to another Neuro immune dysfunction or just caused by those antibodies themselves ,sad part is I was not lucky enough to meet a smart Doctor that suspected it early ,time is of the essence as far as treatment is concerned.
     
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  10. Shawn

    Shawn Senior Member

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    You'll never get plasmapheresis on the NHS for ME in the UK they think your illness is all in your head,and privately it will be a sheer rip off ,you will need to go to Taiwan or mainland China if you want a good cheap deal on plasmapheresis (2000 pound -3000 pound) and believe me this is ridiculously cheap compared to private rates in the U.K or US
     
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