1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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RTX successful in inflammatory psychiatric disorder

Discussion in 'Rituximab: News and Research' started by Sherlock, Apr 24, 2014.

  1. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    Czechosherlockia, USA
    FWIW:

    http://www.disabilityscoop.com/2014/04/22/debate-mimics-psychiatric/19299/

    A normal sixth-grader suddenly undergoes severe change, diagnosed as bipolar, is non-communicative, no psychiatric drug helps, steroids help only a little... then RTX makes for stunning improvement.

    The hypothetical condition is PANS (pediatric autoimmune neuropsychiatric disorders) which blames post-infection antibodies.
     
    merylg, alex3619, Sidereal and 4 others like this.
  2. natasa778

    natasa778 Senior Member

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    RTX and plasma exchange. I am curious as to why this treatment is not explored more for other 'mysterious' neuroimmune conditions, esp in combination with rtx and others...
     
    NK17 likes this.
  3. NK17

    NK17 Senior Member

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    I tell you why @natasa778: it's because the NHS and private insurance companies don't want to spend the money.
    It's much easier to pretend that 'mysterious' neuroimmune illnesses are to be treated with psychiatry, it justifies its own existence as a branch of the "scientific" medical field and psych drugs are much, much cheaper ...
     
    Last edited: Apr 26, 2014
  4. natasa778

    natasa778 Senior Member

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    Oh I get that part :( meant more along the lines of docs who do treat ME and such as biomedical illnesses, even they don't mention or consider plasmapheresis (to my knowledge). Big shame imo.
     
    NK17 likes this.
  5. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    Czechosherlockia, USA
    I'd wondered why they did that in this case, since antibodies are large and don't get past the blood brain barrier. I'd assumed that the benefit came from RTX eliminating the B-cells and their cyokines.

    Or maybe the aberrant antibodies were having an indirect effect on the brain.
     
  6. natasa778

    natasa778 Senior Member

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    as far as I know this combination is frequently used in 'legit' autoimmune conditions and post-trasplant. Sometimes one of them is combined with IVIG, or all 3 are used ...
     
    Sherlock likes this.
  7. NK17

    NK17 Senior Member

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    Even the few docs who treat ME have their hands tied. The majority of them cannot justify treatments such as IVIG in the presence of very high Parvovirus B19, even less plasmapheresis.
    Until we get accepted the fact that ME is a chronic highly debilitating disease (such as MS, SLE, SjS, PBC, to name a few) and its biomarkers (which have been searched and found since the early 90's, especially the immune derangement such as malfunctioning NK cells) we won't get any treatment, we'll be left to rot.
    We need to fight to change the status quo.
    I personally see only a small handful of ME docs that want to change and are willing to fight for us. Some are relatively new to the field, some old names, if you read the Fukuda and many other studies, you can see who has been suspiciously playing the game of the powers to be and barely showing any sign of wanting to bring any real change.
     
    Last edited: Apr 25, 2014
    natasa778 likes this.

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