Subscribe to Blog via Email
Pages
-
Recent Posts
Recent Comments
- Jennie Spotila on Favorite Reads of 2023
- Sue Jackson on Favorite Reads of 2023
- Alicia Butcher Ehrhardt on Favorite Reads of 2023
- Pat Radcliff on Favorite Reads of 2023
- Janet Dafoe on Favorite Reads of 2023
Archives
- 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
Search Results for: guidelines
#MillionsMissing
For as long as I have been an ME/CFS advocate, I have heard people say we should protest/take to the streets/be more like ACT UP. But for the most part, demonstrations have been small (even one woman) shows. That is … Continue reading
Posted in Advocacy
Tagged action, CDC, clinical trials, DHHS, drugs, FDA, funding, government, grants, living with, medical education, NIH, occupy, politics, priorities, recommendations, speaking out, spending, treatment
9 Comments
Add Your Voice to the Call to Investigate PACE
(reprinted with permission) Twelve U.S. ME/CFS organizations have called on the Centers for Disease Control and Prevention (CDC) and Agency for Health Research & Quality (AHRQ) calling on them to investigate the PACE trial concerns outlined by David Tuller and … Continue reading
Posted in Advocacy
Tagged action, AHRQ, CBT, CDC, exercise, GET, government, PACE, pacing, politics, recommendations, researchers, speaking out
2 Comments
The Oxford Problem
Today, I’m very pleased to share this guest post by Chris Heppner. I loved Oxford when there as undergraduate (1951-4)–truly a city of dreaming spires, peaceful libraries, walks in the country to a lovely old pub by a waterfall with … Continue reading
Posted in Commentary, Research
Tagged AHRQ, case definition, CBT, GET, government, NIH, occupy, Oxford, P2P, politics, post-exertional malaise, psychosocial, speaking out
10 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
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
Guest Post: CFSAC Comments of Joe Landson
Joe Landson delivered these comments at the CFS Advisory Committee meeting today. He has kindly given me permission to post them in their entirety here. Testimony of Joseph D. Landson June 2014 Chronic Fatigue Syndrome Advisory Committee First, credit where … Continue reading
Posted in Advocacy
Tagged action, case definition, CFSAC, DHHS, government, NIH, occupy, P2P, politics, recommendations, speaking out, testimony
6 Comments
A Different CFSAC
It’s that time again: meaning it is time for another CFS Advisory Committee meeting. Due to the make up day in March, the meetings have fallen very close together. Presumably this spring meeting puts the calendar back on track (but … Continue reading
Posted in Advocacy
Tagged action, CFSAC, DHHS, government, IOM, P2P, politics, recommendations, speaking out, testimony
Comments Off on A Different CFSAC
Ess, CFSAC Testimony, December 2013
Ess submitted anonymous written comments for the public record. I’m happy to publish her comments in their entirety, using her screen name with her permission. Introduction Thank you very much for this most important opportunity to add written comments to … Continue reading
IOM Panelists: The Unknowns
In this post, we present profiles of the seven members of the Institute of Medicine ME/CFS definition panel who were unknown to the ME/CFS community. You can read about the team who put this together and the methods we used … Continue reading
Posted in Advocacy, Commentary
Tagged action, case definition, IOM, IOM panel, politics, profile, researchers, speaking out
34 Comments
Guest Post: Slightly Snarky
Joe Landson authors this guest post on the chasm between patient experiences and the people who need to understand them. We suffer through many devastating symptoms, but today I’m only thinking of one. It’s perhaps the most devastating effect of … Continue reading →