Tag Archives: participation

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

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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

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FINALLY: RFA Funding Announced

This post was last updated on September 30, 2017. Edits are clearly indicated in the text. At long last, NIH has announced the awards of RFA funding to three Collaborative Research Centers and a Data Management and Coordinating Center for … Continue reading

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Best Practices

How can people with ME be more engaged in research? I mean really, meaningfully engaged from the design phase all the way through to the dissemination phase? I have an answer! With the help of #MEAction, I led a group … Continue reading

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Reality Checking, Dr. Nath

This is the second of a two part series. Part One described the controversy and my fact checking. Part Two presents my analysis of the potential danger to the Clinical Care study. As part of the renewed focus on ME/CFS … Continue reading

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Fact Checking, Dr. Nath

This is the first of a two part series. Part One describes the controversy and my fact checking. Part Two will present my analysis of what I found. As part of the renewed focus on ME/CFS at NIH, the National … Continue reading

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