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Tag Archives: CFSAC
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: Where Next?
There is one official final step in the P2P process: a federal partners meeting supposed to be held six to eight months after the workshop. But there are other marching orders, too. For us. Federals Only As described on the … Continue reading
Posted in Advocacy
Tagged action, biomarkers, case definition, CFSAC, DHHS, drugs, funding, government, grants, NIH, occupy, P2P, politics, post-exertional malaise, priorities, psychosocial, recommendations, researchers, speaking out, spending, treatment
10 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
Posted in Advocacy, Commentary
Tagged action, AHRQ, case definition, CBT, CFSAC, DHHS, evidence review, funding, GET, government, grants, IOM, NIH, occupy, Oxford, P2P, politics, priorities, recommendations, researchers, speaking out, testimony
42 Comments
Stuck? Four Months of Almost Nothing
In this guest post, Dr. Alan Gurwitt argues that it is time for ME/CFS advocacy to move on and move forward. The post first appeared on the website for the Massachusetts CFIDS/ME & FM Association, and is reprinted here with … Continue reading
Posted in Advocacy, Commentary
Tagged action, case definition, CDC, CFSAC, DHHS, funding, government, guest post, IOM, NIH, occupy, P2P, politics, priorities, recommendations, researchers, speaking out, spending
9 Comments
Running in the Background
Sometimes, there’s no real news to report because things are running in the background. If you are a Mac user, then you are probably familiar with the beach ball of death. It just spins and spins while you wait for … Continue reading
Posted in Advocacy
Tagged action, CFSAC, DHHS, evidence review, FOIA, government, NIH, P2P, politics, speaking out
20 Comments
Very Very Aware
May 12th is International ME/CFS Awareness Day, selected because it is Florence Nightingale’s birthday. If you look around blogs and social media today, you’ll probably see a lot of blue ribbons and statements from patients. There’s the May 12th Blog … Continue reading
Posted in Commentary
Tagged action, anger, awareness, CDC, CFSAC, DHHS, FDA, funding, government, May 12th blog bomb, NIH, occupy, politics, priorities, recommendations, speaking out
38 Comments
Awareness Reboot
Today’s post comes from Denise Lopez-Majano. She makes a powerful argument for the kind of awareness campaign we need. The release of the Institute of Medicine report resulted in an unprecedented amount of media coverage and public discussion. As has … Continue reading
Posted in Advocacy, Commentary
Tagged action, awareness, case definition, CDC, CFSAC, Denise Lopez-Majano, DHHS, funding, government, guest post, IOM, occupy, politics, priorities, recommendations, speaking out
30 Comments
No CDC Funding for CFS?
ME/CFS advocates focus almost exclusively on research funding from the National Institutes of Health, and with good reason. But now it appears that funding for the Centers for Disease Control’s CFS program may be at risk in the 2016 appropriations … Continue reading →