Subscribe to Blog via Email
Pages
-
Recent Posts
Recent Comments
- Jennie Spotila on Getting a Normal Result
- Maureen on Getting a Normal Result
- Kathy Durkin on Getting a Normal Result
- Jennie Spotila on Getting a Normal Result
- Jennie Spotila on Getting a Normal Result
Archives
- October 2024
- September 2024
- January 2024
- December 2023
- November 2023
- October 2023
- September 2023
- June 2023
- December 2022
- November 2022
- October 2022
- August 2022
- May 2022
- February 2022
- January 2022
- December 2021
- November 2021
- October 2021
- September 2021
- August 2021
- May 2021
- April 2021
- March 2021
- February 2021
- December 2020
- November 2020
- October 2020
- September 2020
- July 2020
- June 2020
- April 2020
- March 2020
- February 2020
- January 2020
- November 2019
- August 2019
- June 2019
- May 2019
- April 2019
- March 2019
- February 2019
- January 2019
- November 2018
- 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
- activism
- biomarkers
- case definition
- CBT
- CDC
- CFIDS Association
- CFSAC
- coping
- covid-19
- CPET
- DHHS
- disability
- drugs
- exercise
- family
- FDA
- funding
- GET
- government
- grants
- IOM
- living with
- Millions Missing
- NIH
- occupy
- orthostatic intolerance
- P2P
- pacing
- pain
- politics
- post-exertional malaise
- priorities
- psychosocial
- recommendations
- researchers
- RFA
- RFA Ticker
- speaking out
- spending
- stress
- suffering
- testimony
- treatment
Tag Archives: evidence review
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
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
Comments on P2P Systematic Evidence Review
After four weeks of intense work, a group of advocates has submitted forty pages of comments on the P2P systematic evidence review. We published a summary of our comments last week. If you want to read the full document, you … Continue reading
Posted in Advocacy
Tagged action, AHRQ, case definition, DHHS, evidence review, government, NIH, occupy, P2P, politics, priorities, recommendations, researchers, speaking out
25 Comments
Evidence Review Comments Preview
This post comes via Mary Dimmock, Claudia Goodell, Denise Lopez-Majano, and myself. You are welcome to publish it on your site with attribution and a link back to this post. You are also welcome to use this (and other material … Continue reading
Posted in Advocacy, Commentary
Tagged action, AHRQ, case definition, DHHS, evidence review, exercise, funding, GET, government, NIH, occupy, P2P, politics, priorities, recommendations, researchers, speaking out, treatment
24 Comments
They Know What They’re Doing (Not)
This post comes via Mary Dimmock, with assistance from Claudia Goodell, Denise Lopez-Majano, and myself. You are welcome to publish it on your site with attribution to Mary Dimmock. Last week, Jennie Spotila and Erica Verillo posted summaries of … Continue reading
Posted in Advocacy, Commentary
Tagged action, AHRQ, case definition, CBT, DHHS, drugs, evidence review, funding, GET, government, guest post, NIH, occupy, P2P, politics, post-exertional malaise, priorities, recommendations, speaking out, treatment
18 Comments
A Review of the P2P Systematic Review
The draft systematic evidence review on the Diagnosis and Treatment of ME/CFS was published online last week. It’s a monster – 416 pages in total. I know many ME/CFS patients may not be able to read this report, so in … Continue reading
Posted in Advocacy, Commentary, Research
Tagged action, AHRQ, case definition, CBT, DHHS, evidence review, GET, government, occupy, P2P, politics, priorities, recommendations, speaking out
44 Comments
Mary Dimmock: Fight the Power
The draft P2P evidence review report has been issued and we have all had a chance to see just how appallingly bad it is. Now the question is what to do next. Some have called for us to oppose P2P … Continue reading
Posted in Advocacy
Tagged action, case definition, DHHS, evidence review, government, guest post, NIH, occupy, P2P, politics, speaking out
42 Comments
AHRQ Evidence Review Changes Its Conclusions
Mary Dimmock has led the way on this issue, and is co-author of this post. In response to requests by U.S. patient organizations and advocates, the U.S. Agency for Healthcare Research and Quality (AHRQ) has issued an Addendum to its … Continue reading →