Discussion in 'General ME/CFS News' started by Firestormm, May 11, 2014.
Yes, I agree. It was so candid, full of information and actually uplifting. I hope many of you have been able to listen in.
I enjoyed that. Nice format. Almost fell asleep. I shall have to have a word with Jen about talking too much ROFL (Don't mean it Jen!)
Excellent job everyone
Yes, that was great - very cheering to watch such an 'A' team discussing the possibilities. I was interested in what Lenny Jason was saying about how the internet could be used to come up with a good consensus name to replace 'CFS'. He'd be a great person to do that.
Great show. I took lots of notes. I'm still not convinced we should be asking for federal research money while the definition is still screwed up.
I'm confused by Llewellyn's concept of a "single person" in Washington. Is he suggesting we hire a lobbyist or get a new Congressperson to adopt us as their pet project? A lobbyist costs beaucoup $$$$$. Or do we have to hire a lobbyist to talk to the Congress people to identify which one may want to adopt us? Llewellyn said the window of opportunity is at the next election, which is Nov. 4, 2014, so we have some time.
Given unlimited resources, however, I would try every approach mentioned, to see what sticks. But as things stand, I don't know if we can hire a lobbyist and fund Lipkin's research all at the same time.
Another idea I had was to possibly share or borrow a lobbyist between a coalition of similar disease groups. This would make it more cost effective for several smaller groups. We might be able to pull that off.
I like that idea; sharing a lobbyist with similar diseases if we can't afford our own.
If you missed it, you can watch it here
Ta. Lots of stuff going on today - I'm so aware of ME!!
I missed it yesterday, but it's all recorded and accessible at the original link:
He's written about this recently:
If I remember correctly, he's suggesting that the ME/CFS community crowdfund to pay for a professional lobbyist to be situated in Washington for a year. Or longer if we can raise the funds.
who misunderstood the term 'hangout'.
What he said in his ME/CFS Alert video, what he wrote in the Manifesto, and what he said on the Thrive show are all slightly different things. Maybe he keeps adjusting his thoughts as he goes along.
My M-I-L was a very successful volunteer lobbyist for a non-profit locally. After reading some of my facebook posts yesterday, she came out of her room last night to say, "You really need someone on the ground who can figure out who these congressional people listen to. It's not just talking to them, it's really connecting to the people that THEY listen to that's important and will get you somewhere. And having paid people to do it is critical because once you do that, they will make sure you keep getting money. Obviously those of you who are sick aren't in any position to be doing all of this lobbying."
Sounds like Llewellyn King is on the right track. Maybe we need to shift our focus on crowdfunding for now and get it moved toward getting a lobbyist in DC. Once we start making some inroads there, we might not have to keep crowdfunding all these individual research projects for places like Columbia, Stanford, OMI, etc. Even my cardio doc was laughing in disbelief when I mentioned having to crowdfund for Lipkin.
You can also try a Google Site Search
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