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Tag Archives: testimony
Tasha
There are many beautiful, powerful images from the September 27th Millions Missing protests. My friend Tasha spoke at the #MillionsMissing New York City event, and I’m proud to share her comments with you here. Hi, my name is Tasha and … Continue reading
Posted in Advocacy
Tagged action, funding, government, name, NIH, occupy, orthostatic intolerance, politics, post-exertional malaise, priorities, speaking out, spending, suffering, testimony, treatment
8 Comments
CFS Advisory Committee Meeting Outcomes
The CFS Advisory Committee is charged with advising the Secretary of Health and Human Services on issues related to ME/CFS. HHS has a very patchy record in its responses to CFSAC recommendations, but the committee’s public meetings remain highly significant. … Continue reading
Posted in Advocacy
Tagged action, CDC, Centers of Excellence, CFSAC, DHHS, FDA, funding, ME, NIH, politics, priorities, recommendations, SMCI, speaking out, spending, testimony
7 Comments
CFSAC Comments, Terri Wilder
Editor’s note: Terri Wilder made these remarks at the May 18, 2016 meeting of the CFS Advisory Committee. I’m pleased to publish her complete comments, with her permission. For new readers, ME refers to myalgic encephalomyelitis, a neuroimmune disease. Good … Continue reading
Posted in Advocacy
Tagged action, CDC, FDA, funding, government, NIH, occupy, politics, priorities, recommendations, researchers, speaking out, suffering, testimony
48 Comments
CFSAC Testimony, Jennie Spotila, August 18, 2015
Unfortunately, I am too sick to offer public comment by telephone for the August 18-19, 2015 meeting of the CFS Advisory Committee. I submitted these written comments for the record. Thank you to all of the advocates who are speaking … Continue reading
Posted in Uncategorized
Tagged action, CFSAC, DHHS, funding, government, grants, IOM, living with, NIH, occupy, P2P, politics, priorities, recommendations, researchers, speaking out, spending, testimony
28 Comments
Deadlines and Opportunities
There are a number of opportunities for ME/CFS advocacy right now – all of which you can do on your own from home! Here are the details: CFS Advisory Committee Public Comment: The Federal Register notice for the August 18-19th … Continue reading
Posted in Advocacy
Tagged action, CFSAC, Congress, DHHS, funding, government, NIH, occupy, politics, priorities, recommendations, researchers, speaking out, testimony
6 Comments
The Return of CFSAC
Publicly, the CFS Advisory Committee has been MIA this year. There were some comings and goings, and general silence, but now there is finally movement to report. UPDATE July 28, 2015: The Federal Register notice for the meeting has been … Continue reading
Posted in Advocacy
Tagged CDC, CFSAC, DHHS, funding, government, IOM, NIH, P2P, politics, priorities, recommendations, speaking out, testimony
7 Comments
P2P Library Now Available
As I promised in my previous post, I have created a library of public comments submitted to NIH on the P2P Panel’s draft report. You can view links to each comment on this page. I will update the page with … Continue reading
Posted in Advocacy
Tagged action, DHHS, government, occupy, P2P, recommendations, speaking out, testimony
2 Comments
CFSAC: Stand Up for Your Work
I delivered this public comment by telephone at the December 3, 2014 CFS Advisory Committee meeting. This committee’s legitimacy is at stake. Nine months ago, your March meeting recommendations were substantially altered after your public vote. Documentary evidence that I … Continue reading
Posted in Advocacy, Commentary
Tagged action, CFSAC, DHHS, FACA, government, occupy, politics, recommendations, speaking out, testimony
10 Comments
CFSAC SNAFU
We’ve known about the CFS Advisory Committee meeting on December 3rd and 4th for awhile, but yesterday the details came out about the agenda and public comment. Judging from the advocates I’ve talked to, it’s not going over well. If … Continue reading
Posted in Advocacy
Tagged action, CFSAC, DHHS, government, occupy, politics, recommendations, speaking out, suffering, testimony
13 Comments
Showing the Back of Their Heads
The final P2P report is published, and now it’s time to evaluate the quality of the recommendations and how well the process served ME/CFS patients. There are many good things in the P2P report, and I’ll be focusing on those … Continue reading →