Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Simmaron Research, Patient Day, 9th September 2017

Discussion in 'Upcoming ME/CFS Events' started by AndyPR, Sep 3, 2017.

  1. AndyPR

    AndyPR RIP PR :'(

    From their email newsletter - http://mailchi.mp/0a19070f974f/simmaron-research-news-updates?e=db85dc6e2d
    In this Facebook postupdate, https://www.facebook.com/SimmaronResearch/posts/1685627484802734, they say
     
    Joh, Invisible Woman, rosie26 and 8 others like this.
  2. A.B.

    A.B. Senior Member

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    It's a live video stream.
     
    Invisible Woman and AndyPR like this.
  3. AndyPR

    AndyPR RIP PR :'(

    Yeah, sorry, I knew that but it didn't occur to me to provide a bit more explanation.
     
  4. Gemini

    Gemini Senior Member

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    @A.B. do you know if one has to have a Facebook account to view it or is it available to all?
     
  5. A.B.

    A.B. Senior Member

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    I think it's available to all but don't know for sure. Simmaron Research videos are publicly visible on their facebook page. I assume the live stream will appear like a regular video, just live.
     
  6. Cort

    Cort Phoenix Rising Founder

    I'll be there. Looking forward to it.
     
    Orla, Joh, Snow Leopard and 2 others like this.
  7. shannah

    shannah Senior Member

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    Last edited: Sep 9, 2017
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  8. Snow Leopard

    Snow Leopard Hibernating

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    South Australia
    Can you please ask the researchers about whether anyone has any ideas about the link of CFS following Guillain–Barré syndrome?

    There seems to be a pervasive myth that most GBS patients have good recoveries.

    Patient experiences:
    http://www.steadyhealth.com/topics/guillain-barre-and-chronic-fatigue?page=1

    http://www.sciencedirect.com/science/article/pii/S0022510X12000482
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4162023/
    https://www.ncbi.nlm.nih.gov/pubmed/27077919

    etc.

    At the very least this seems like an interesting subgroup of patients with specific disease pathology.
     

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