So I realize it’s three year later... but I hope yall are still around. I wanted to let the community know I am still championing this petition despite my lack of presence activism-wise this year since I’ve been knocked flat since Christmas.
The petition is now at more than 53,000 signatures and I would like to continue pushing for more. Last year I sent the nearly 3,000 pages of names and stories/pleas for help that patients, loved ones and advocates had left on the petition feedback page. I received a response from Dr. Koroshetz @ the NIH on behalf of F Collins, which I can post here later. But you might guess what it was: a “nice and optimistic letter” that boasted/defended how much the NIH has done for MECFS research, and also how the bigger problem was the lack of researchers applying for grants, more than a lack of sufficient funding for research. So, agree to disagree on that one.
Anyway, I didn’t mean this post to be so long. I just wanted people to know the petition is still “up and running” and open to signatures from anywhere in the world. I’m almost 100% certain the OMF will Solve this thing before the NIH takes it seriously enough to fund the biomedical studies that would solve it on their end. But I don’t want to stop being a thorn in their ass along the way. Also, they are where the legitimate money is. The money we need and the OMF needs and other specialists like Klimas and Lipkin and Bateman etc need. They’re the ones with the adequate funding that could preform funding answers forward and up the snail like pace that we’ve been stuck at for so long. Things are starting to change and we’re moving in the right direction, but the NIH is still so far from where they need to be in funding allocation and in their understanding the situation with M.E. as a health crisis, and not simply as a mildly underfunded disease.
This is all basically to say, I’ve not given up on what this petition, with its high numbers of support, could do for our cause— even if it’s just to attract media, that will help light a larger fire under their butts. It will increase outside pressure, and it’s clear they won’t act without that. Particularly congressional pressure, and I think this petition can help in that domain as well. I don’t want the NIH to ever think they’re off the hook because basically public charity is doing the job they have failed to do.
If you’ve not signed or shared, it’s still open, and there is still potential for this to help our ultimate cause. Will post more details about their response later, and as always, I’m open to ideas from the community as how best to use this to our advantage.
Thanks again for everyone who’s helped circulate this. Back after some rest. -Mary Here is petition link: https://www.change.org/p/increase-research-funding-for-me-cfs