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

petrichor said:
I don't really think it's a good idea to continue lobbying the NIH like this. Public agencies weren't meant to be lobbied. They aren't elected, and they have little motivation to respond to public will. It's a much better idea to lobby congress to take action or put on pressure.
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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.
 
Kalliope said:
It is a follow up letter after their meeting with NIH, so thought this thread was best suited.
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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?
 
Sasha said:
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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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 :-)
 
Sisyphus said:
Personally, I think the pace of progress with one percent funding is virtually zero.
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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...
 
There is an action attached to the tweet / article if that's what you mean, @Sasha ?

Right now we need Dr. Collins to hear from you, the community, on how necessary it is for the NIH to take bold steps to urgently produce outcomes for people with ME. Dr. Collins needs to hear from every single person whose life has been affected by ME that we demand full throttle action now.
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JaimeS said:
There is an action attached to the tweet / article if that's what you mean, @Sasha ?
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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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