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28 Nov 2017 | Telebriefing - updates on NIH attempts to advance ME/CFS research - TRANSCRIPT/RECORDING NOW AVAILABLE

Discussion in 'General ME/CFS News' started by Sasha, Nov 22, 2017.

  1. Sasha

    Sasha Senior Member (Voting Rights)

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    Edit: As of 13 December, a recording and transcript are available here.

    Full info here: http://www.twitlonger.com/show/n_1sqb52r

    I'm a bit baffled about what number you should phone from the UK if you're not in one of those five big cities...
     
    Last edited: Dec 13, 2017
    Aroa, Joh, Esther12 and 5 others like this.
  2. Andy

    Andy Committee Member (& Outreach when energy allows)

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    I've emailed them.
     
    MEMarge, Barry, Sasha and 1 other person like this.
  3. BurnA

    BurnA Senior Member (Voting Rights)

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    At a guess I would say the one closest to you.

    It's just to avoid you having to pay for a longer distance phone call.
     
    MEMarge likes this.
  4. Andy

    Andy Committee Member (& Outreach when energy allows)

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    My assumption would be that, nowadays, calls would cost the same from anywhere within the UK. Anyway, I'll wait and see what their answer is.
     
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  5. Dolphin

    Dolphin Senior Member (Voting Rights)

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  6. Esther12

    Esther12 Senior Member (Voting Rights)

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    It would be good to know what is said, but I doubt I'll ring in from the UK.
     
    MEMarge likes this.
  7. Alvin

    Alvin Senior Member (Voting Rights)

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    Can't easily attend with the timing but i hope it goes well. I would suggest Dr Davis get funding, world class scientist told Stanford is not a real institution (i forget exact wording) is beyond belief. That said in general updating best practices, weeding out pseudoscience and scams (PACE for example) is good policy and they need to focus on doctor education, a CME course would be great.
    They need to set up more research teams, destigmatize their funding model against the disease and repair the harm they have done, from raiding ME/CFS money in the past to the stigmatizing name and retracting negative/contradictory statements they have made in the past.
     
    Last edited: Nov 28, 2017
  8. MErmaid

    MErmaid Guest

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    I would want to see the actual original document, before speculating on it’s contents. This is social media, where anyone can say anything, and they usually do.
     
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  9. Dolphin

    Dolphin Senior Member (Voting Rights)

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  10. MErmaid

    MErmaid Guest

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    Derya, seemed open minded and willing to learn from patients. Also, said he was available thru social media. This seems encouraging.
     
    Last edited: Nov 28, 2017
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  11. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  12. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    https://twitter.com/Derya_
     
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  13. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  14. Esther12

    Esther12 Senior Member (Voting Rights)

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    Thanks Tom and MEmermaid.
     
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  15. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Not sure I'm any wiser.
     
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  16. Aroa

    Aroa Established Member (Voting Rights)

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    If they allocated more Budget to ME/CFS , there would be more researchers interested.

    What about GWI then ?
     
    Last edited: Nov 28, 2017
  17. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    I skyped in using main US number from Ireland:
     
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  18. Alvin

    Alvin Senior Member (Voting Rights)

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    I believe Janet posted it on the other place when it happened, though i don't think it was a photocopy, it was typed text.
     
  19. Alvin

    Alvin Senior Member (Voting Rights)

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    Thats crazy, if only 12% get funded then to double the funding would require 833% more researchers.
    That is ludicrous, what are the unselected ones supposed to do, leave medicine and retrain for another field perhaps?
    If every other field of research has this kind of dismal response rate then we are losing 88% of our best minds... :emoji_face_palm:

    I assume they will cry fowl if doctors apply for funding even though they are not interested in doing ME/CFS research just to get the numbers up to help get people the money who have the skills to work on this...

    My post is not directed at you Tom, its directed at the ridiculous NIH who seem to think this is a chicken and the egg problem so prefer to keep treating us like second class citizens
     
    Last edited: Nov 29, 2017
  20. Adrian

    Adrian Administrator Staff Member

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