Tag Archives: engagement

How To Represent

Posted on July 16, 2018 by Jennie Spotila

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 →

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NIH Forms New Working Group on ME/CFS

Posted on June 22, 2018 by Jennie Spotila

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 →

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Public Comment on Engaging People with ME

Posted on June 20, 2018 by Jennie Spotila

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 →

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Doing Patient Engagement

Posted on February 22, 2018 by Jennie Spotila

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 →

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