Subscribe to Blog via Email
Pages
-
Recent Posts
Recent Comments
- James David Chapman on Protesting Per Fink
- Nancy Blake on Protesting Per Fink
- James David Chapman on Protesting Per Fink
- Linda on Taking Care of Your Self
- Linda on Taking Care of Your Self
Archives
- October 2018
- September 2018
- August 2018
- July 2018
- 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 anaerobic biomarkers case definition CBT CDC CFIDS Association CFSAC coping CPET DHHS drugs exercise family FDA funding GET government grants heart rate monitor IOM living with Millions Missing NIH occupy orthostatic intolerance P2P pacing pain pathogenesis politics post-exertional malaise priorities psychosocial recommendations researchers RFA RFA Ticker speaking out spending stress suffering testimony treatment
Tag Archives: government
2017 NIH Spending on ME/CFS Research
It is time to analyze how NIH spent its investment in ME research in 2017. NIH has not yet issued its own tally for 2017 through the categorical spending page, so I can’t say for sure how much money NIH … Continue reading
Posted in Advocacy, Research
Tagged accountability, action, biomarkers, CPET, funding, government, grants, NIH, orthostatic intolerance, pathogenesis, politics, post-exertional malaise, priorities, researchers, RFA, speaking out, spending, treatment
20 Comments
Doing Patient Engagement
One of my passions is engaging people with ME in research, and especially as more than just subjects of the research. That’s why I co-authored a report on best practices in patient engagement. As the NIH-funded Collaborative Research Centers kick … Continue reading
Posted in Advocacy, Research
Tagged action, collaboration, engagement, funding, government, grants, NIH, participation, partnership, patient, patients, researchers, RFA
7 Comments
For Serious?
It’s time for another round of “How Stupid Is This?” That’s a game I just invented. There are no rules, and definitely no prizes. Trust me. It’s a great game. It’s even more fun if you read this whole post … Continue reading
Posted in Advocacy, Commentary
Tagged accountability, CFSAC, DHHS, government, occupy, politics, speaking out, stupid, testimony
39 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
Posted in Advocacy, Commentary, Research
Tagged accountability, action, biomarkers, funding, government, grants, NIH, orthostatic intolerance, pathogenesis, politics, priorities, researchers, RFA, speaking out, spending, suffering, treatment
22 Comments
FINALLY: RFA Funding Announced
This post was last updated on September 30, 2017. Edits are clearly indicated in the text. At long last, NIH has announced the awards of RFA funding to three Collaborative Research Centers and a Data Management and Coordinating Center for … Continue reading
Posted in Advocacy, Commentary, Research
Tagged accountability, action, biomarkers, CPET, funding, government, grants, NIH, participation, partnership, pathogen discovery, pathogenesis, patients, post-exertional malaise, priorities, researchers, RFA, spending, transparency, updated
23 Comments
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
Those CDC Documents
Last month, I wrote about CDC wanting to charge me over $200 for documents I had requested under the Freedom of Information Act. I was looking for information on how much CDC had spent on the Institute of Medicine (now … Continue reading
Posted in Advocacy
Tagged accountability, AHRQ, case definition, CDC, CMS, contract, DHHS, FDA, FOIA, funding, government, HRSA, IOM, NIH, SMCI, spending, SSA
8 Comments
All The Time and None At All
Dr. Francis Collins, in answering a question about ME research on April 20th, said that NIH recognizes and empathizes with our suffering and our “frustration that so little is known.” Then he dropped some knowledge. Dr. Collins said, “Research, done … Continue reading →