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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About the Bioenergy Health Scientist, now researching our disease

Discussion in 'General ME/CFS News' started by usedtobeperkytina, Mar 31, 2017.

  1. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
  2. Diwi9

    Diwi9 Senior Member

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    @usedtobeperkytina - Thank you for sharing this information, it would be wonderful to have readily available technology at our disposal to help us understand how we are functioning. I hope you can attend the symposium. If you do, I hope you have the opportunity to ask question of some of the researchers and MD's...then update us!
     
    Invisible Woman likes this.
  3. slysaint

    slysaint Senior Member

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  4. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I didn't ask specifically. We only had an hour. I spent most of that time finding out his history with our disease, how he got into the research of our disease, and understanding the science and how it fits in with what we already know about our disease and about the Nevada study. I also wanted the local interest angle. I would imagine, the way he talked, he knows very little of our world. But, I hope some of the things I shared with him made him even more curious. It sure seems his work would have led to our disease earlier. But he's only been working with patients for 6 years, and he started with patients easily available to him.

    If the science continues down this track for our disease, I expect his name will come up in future SEID studies.
     
  5. usedtobeperkytina

    usedtobeperkytina Senior Member

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    It will depend on my function at that time. I have been having a run of good days. But I've also been much more active. You never know when the payback will hit.
     
    Solstice, Gemini, Webdog and 4 others like this.
  6. Diwi9

    Diwi9 Senior Member

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    Truth!
     

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