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 , , , , , , , , , , , , , , , | 11 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 , , , , , , , , , , , , , , | 8 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

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , | 6 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 , , , , , , , , , , , , | 7 Comments