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: advocacy groups
The Truth Is Not Always Nice
My parents used to tell me, “If you can’t say something nice, then don’t say anything at all.” But they also raised me to tell the truth, especially when speaking to authority. I have to say some true things today, … Continue reading
Posted in Advocacy, Commentary
Tagged accountability, action, activism, advocacy, advocacy groups, blame, conspiracy, fatigue, living with, nice, noncompliant, occupy, PACE, pejorative, politics, priorities, researchers, speaking out, stereotypes, tired, truth, voice, Walitt
27 Comments
FDA Webinar on Advocacy
Yesterday, the FDA hosted a webinar for the ME/CFS community on “Working Together for Change.” Their stated goal was to show what has been successful for patient groups in the past in working with FDA and other entities. The slides … Continue reading
Posted in Advocacy
Tagged advocacy groups, approval, CDER, DHHS, drugs, FDA, government, politics, treatment
12 Comments
Expectations
Unrest, Jen Brea’s documentary about ME, will be shown on PBS stations around the United States on Monday night – January 8th. The film is already available worldwide, and is short-listed for an Oscar nomination (my review of the film … Continue reading →