The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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CFS could be caused by antibodies, have anyone tried first-line therapy?

Discussion in 'General ME/CFS Discussion' started by redo, Jun 17, 2017.

  1. redo

    redo Senior Member

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    Now that antibodies have been found in ME patients, and it's plausible such antibodies cause encephalitis, I wonder if anyone have tried first-line therapy against antibody-mediated encephalitis?

    It tends to be something like this:

    IV solumedrol – 1 gram daily for 3-5 days then a taper over several weeks – in addition to plasmapheresis (or in addition to IVIG).

    I've been given solumedrol before, and it gave me a short relief. But it wasn't given several days in succession, and it wasn't given with plasmapheresis following it.
     
    Last edited: Jun 17, 2017
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  2. TrixieStix

    TrixieStix Senior Member

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    The findings your are referring to have yet to be replicated by anyone as far as I know. It's also known that these antibodies are found in a % of healthy people. Until it's replicated I don't think it tells us much of anything.
     
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  3. redo

    redo Senior Member

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    Sure, the findings haven't been replicated, and it's early to say what will come of this.

    My question is whether anyone has (past tense) tried such treatment.

    If there are patients who've had, and it didn't benefit them, then it would weaken the hypothesis that such mechanisms are involved.

    But if there are patients who've tried it and benefited, then it strengthens the hypothesis.

    I've read a while a back about patients getting better by plasmapheresis, and of solumedrol, but I haven't come across any reports of someone combining them.

    This is a bit beside the point, but as to your comment about antibodies being found in healthy people: When it comes to other diseases where antibodies attack the nervous system, then it's hypothesised that as long as the blood brain barrier stays intact, then they may be fine. But a disruption of the blood brain barrier could be what separates healthy people with antibodies and those who are sick and have antibodies.
     

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