Subscribe to Blog via Email
Pages
-
Recent Posts
Recent Comments
- Jennie Spotila on The NIH Pilot Program: What We Can Do
- marcie myers on The NIH Pilot Program: What We Can Do
- marcie myers on The NIH Pilot Program: What We Can Do
- marcie myers on The NIH Pilot Program: What We Can Do
- marcie myers on NIH Time Warp
Archives
- June 2018
- May 2018
- April 2018
- March 2018
- February 2018
- January 2018
- December 2017
- November 2017
- October 2017
- September 2017
- August 2017
- July 2017
- June 2017
- May 2017
- April 2017
- March 2017
- February 2017
- January 2017
- December 2016
- November 2016
- October 2016
- September 2016
- August 2016
- July 2016
- June 2016
- May 2016
- April 2016
- March 2016
- February 2016
- January 2016
- December 2015
- November 2015
- October 2015
- August 2015
- July 2015
- June 2015
- May 2015
- April 2015
- March 2015
- February 2015
- January 2015
- December 2014
- November 2014
- October 2014
- September 2014
- August 2014
- July 2014
- June 2014
- May 2014
- April 2014
- March 2014
- February 2014
- January 2014
- December 2013
- November 2013
- October 2013
- September 2013
- August 2013
- July 2013
- June 2013
- May 2013
- April 2013
- March 2013
- February 2013
- January 2013
- December 2012
- November 2012
- October 2012
- September 2012
- August 2012
- July 2012
- June 2012
- May 2012
- April 2012
- March 2012
- February 2012
Meta
Tags
accountability action AHRQ anaerobic biomarkers case definition CBT CDC CFIDS Association CFSAC coping CPET DHHS drugs exercise FDA funding GET government grants heart rate monitor IOM living with NIH occupy orthostatic intolerance P2P pacing pain pathogenesis politics post-exertional malaise priorities profile psychosocial recommendations researchers RFA RFA Ticker speaking out spending stress suffering testimony treatment
Tag Archives: politics
CDC Website Update
In this guest post, Mary Dimmock summarizes the latest updates to CDC’s ME/CFS website. In early July, the Centers for Disease Control and Prevention (CDC) replaced its website for myalgic encephalomyelitis (ME), previously called chronic fatigue syndrome (CFS) and now … Continue reading
Posted in Advocacy, Commentary
Tagged accountability, case definition, CBT, CDC, CFSAC, DHHS, exercise, fatigue, GET, government, guest post, IOM, medical education, PACE, pacing, politics, post-exertional malaise, recommendations, speaking out, treatment
34 Comments
NIH Attitudes Affect Policy: A Story In Two Parts
The current situation for ME research at NIH is still a problem, despite the fact that the RFAs will increase spending on ME by a significant percentage. I say this based on two things: what the ME field needs to … Continue reading
Posted in Advocacy, Commentary, Research
Tagged accountability, action, activism, advocacy, anger, Centers of Excellence, funding, government, mental illness, NIH, occupy, politics, psychosocial, researchers, RFA, speaking out, stereotypes
45 Comments
CDC Hilarity
Over the years, I have filed many FOIA requests, and I have learned that it can take a long time to get a response. But CDC takes the cake. In my experience, all the agencies meet the statutory requirement of … Continue reading
Posted in Advocacy
Tagged action, CDC, DHHS, FOIA, government, hilarious, IOM, politics, priorities, speaking out
21 Comments
CFSAC: Second Verse, Same as the First
Another CFS Advisory Committee meeting is upon us. The webinar meeting will be held on June 29th and 30th. And as has been the case in the past, the federal approach to the Committee appears lackadaisical. This bare minimum effort … Continue reading
Posted in Advocacy
Tagged accountability, action, CFSAC, DHHS, government, politics, speaking out
19 Comments
PACE-Gate: Continue Tuller’s Work
Journalist David Tuller is well-known to the ME community. His series Trial By Error on Virology blog launched PACE-Gate into the scientific mainstream. Since that series began, Tuller has also written about the devastating effects of PACE-style “treatments,” garnered support … Continue reading
Posted in Advocacy
Tagged accountability, action, CBT, exercise, funding, GET, PACE, pacing, politics, psychosocial, speaking out, treatment
10 Comments
Preconditions, Burdens and Ableism
Who are we, as people with ME? Are we “patients”? Are we defined by the disease and its impact on our lives? Which comes first: me or ME? This is a question of identity, and how language can bestow or … Continue reading
Posted in Commentary
Tagged ableism, Denver Principles, disability, health care, identity, language, living with, occupy, politics, protest, respect, speaking out
18 Comments
The Halfway Point
We are halfway through fiscal year 2017. How much money has NIH spent on ME/CFS research so far this year, and where will we end up? The short version is: based on current spending, we are unlikely to hit the … Continue reading
Posted in Research
Tagged accountability, action, budget, funding, government, grants, NIH, politics, priorities, recommendations, researchers, RFA, speaking out, spending
6 Comments
Bottom of the Ramp
In aggregate, 2017 turned out to be the biggest year of ME/CFS funding at NIH ever. But when I scratched the surface, I found bad news buried within the superficially good news. We are still at the bottom of the … Continue reading →