Subscribe to Blog via Email
Pages
-
Recent Posts
Recent Comments
- bobbi g Ausubel on Darkness and Light
- James R. Spotila on Darkness and Light
- Jennie Spotila on Darkness and Light
- Candice Brown on Darkness and Light
- Roy S on Darkness and Light
Archives
- 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
- anaerobic
- biomarkers
- case definition
- CBT
- CDC
- CFIDS Association
- CFSAC
- coping
- CPET
- DHHS
- disability
- drugs
- exercise
- family
- FDA
- funding
- GET
- government
- grants
- 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: engagement
How To Represent
Last month, I had my first chance to serve on an FDA Advisory Committee as a Patient Representative. I had a lot to learn about the drug under consideration, but I also learned how to use my individual perspective to … Continue reading
Posted in Advocacy
Tagged abuse deterrence, action, drugs, engagement, FDA, government, opioid, pain, participation, patients, represent, representative, speaking out, substance abuse, suffering, treatment
13 Comments
NIH Forms New Working Group on ME/CFS
NIH recently announced that it is forming a new Working Group on ME/CFS. The announcement is very low on specifics, but this Working Group has the potential to make a big impact on research at NIH. Dr. Walter Koroshetz, Director … Continue reading
Posted in Advocacy, Research
Tagged accountability, action, engagement, funding, government, grants, NIH, partnership, politics, priorities, recommendations, researchers, RFA, spending, stakeholders
8 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
Public Comment on Engaging People with ME
I delivered these comments via telephone today at the CFS Advisory Committee meeting: My name is Jennifer Spotila. I will soon begin my 25th year of living with ME. People with ME know this disease. We have valuable insights and … Continue reading →