#MEAction: NIH Update: Collins Will Meet With #MEAction Representatives!

Discussion in 'General ME/CFS news' started by Kalliope, Sep 6, 2018.

  1. Sasha

    Sasha Senior Member (Voting Rights)

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  2. Medfeb

    Medfeb Senior Member (Voting Rights)

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    This is not an either or issue. AIDS activities directly targeted NIH and also went to congress. In our case, there are significant parallel efforts going on with Congress. But some of the changes we've seen are the result of directly lobbying the agencies. We need to do everything we can on all fronts to accelerate delivery of diagnostics and treatments.
     
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  3. Kalliope

    Kalliope Senior Member (Voting Rights)

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    It is a follow up letter after their meeting with NIH, so thought this thread was best suited.
     
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  4. Sasha

    Sasha Senior Member (Voting Rights)

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    I think it's good to have the follow-up letter here, but if they're announcing a new action, I think it would be good to have an additional, new thread so that people who are no longer following this thread realise that there's something that they should be doing. I'm not sure if people have been doing the action they call for all along, though! :)

    @JaimeS, do you know?
     
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  5. Kalliope

    Kalliope Senior Member (Voting Rights)

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    ah, I see what you mean. The twitter campaign was launched earlier, but don't know if it has its own thread here. Feel free to start one :)
     
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  6. Sasha

    Sasha Senior Member (Voting Rights)

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    I'll wait and see what @JaimeS says - I've got a bit confused! :)
     
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  7. JaimeS

    JaimeS Senior Member (Voting Rights)

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    Yes, the NIH seems to feel that 'slow and steady wins the race' but there is a tipping point and we haven't reached it, yet. We don't progress this way; we repeat the same, small findings over and over again and act as though it's news. More funding is necessary to see any progress at all...
     
  8. JaimeS

    JaimeS Senior Member (Voting Rights)

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    There is an action attached to the tweet / article if that's what you mean, @Sasha ?

     
  9. Sasha

    Sasha Senior Member (Voting Rights)

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    I wondered if it was a new action (in which case I think it should have a new thread) or an existing one that was having attention drawn to it again in a different context (in which case it probably shouldn't). :)
     

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