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Tag Archives: P2P
Brian Vastag to Dr. Francis Collins
Yesterday, an open letter from science writer Brian Vastag to Dr. Francis Collins (Director, NIH) flashed around the ME/CFS social media-sphere like lightning. Then it spread among Brian’s high profile colleagues, like Martin Enserink and Carl Zimmer. Brian’s letter is … Continue reading
Posted in Advocacy
Tagged action, exercise, funding, government, grants, guest post, IOM, NIH, P2P, politics, post-exertional malaise, priorities, recommendations, researchers, speaking out, spending, suffering
13 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
P2P Final Chapter
The final P2P ME/CFS documents are coming out today. I am severely crashed from family obligations, so in-depth analysis will take me a little longer than normal. But here are quick descriptions of the various articles to get you started: … Continue reading
Posted in Advocacy
Tagged action, biomarkers, case definition, CBT, DHHS, drugs, exercise, funding, GET, government, IOM, NIH, P2P, politics, priorities, recommendations, researchers
32 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
Contradictions And Unanswered Questions
The P2P process is winding down, with the final report scheduled to be published on June 16th. The public comment saga has not been resolved, and the truth of what happened is buried in typical bureaucratic responses. As I have … Continue reading
Posted in Advocacy
Tagged action, DHHS, FOIA, government, NIH, P2P, politics, priorities, recommendations, speaking out
15 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
Incompetence is Not Criminal
There is no disputing the fact that the Office of Disease Prevention botched the public comment process on the P2P report. But according to the Office of the Inspector General, it’s not worth their attention. In April, I asked the … Continue reading
Posted in Advocacy
Tagged action, DHHS, funding, government, NIH, occupy, P2P, politics, priorities, recommendations, speaking out
10 Comments
Talk Is Cheap
In today’s guest post, Denise Lopez-Majano makes the case that the time for talk is over and the time for action is now. For decades, stakeholders have advocated for funding commensurate with the severity of ME/CFS. The government’s response has … Continue reading →