Over 7K Sign #MEAction’s Response to Flawed CDC Review

We did it! #MEAction has officially submitted our public comment on the CDC’s flawed review of ME/CFS treatments. 

We received 7,209 co-signs from across the ME community supporting our call for the CDC to stop this flawed evidence review from being published. By working together, you helped us send a strong message that GET & CBT are not safe or effective treatments for people with ME.

Now it is the CDC’s move. Will they listen to the ME community when we say we deserve better than a flawed, poorly scoped, and executed research review that continues to repeat the mistakes of the past and puts people with ME at risk of harm? The federal public comment process means that the agency is required to provide a response to our public comment and can’t simply ignore our criticism.

What action will the CDC take in the face of such criticism and opposition from the ME community? Can the CDC acknowledge and learn from their mistakes, turning a new page to begin a real partnership with our community? Or will they dig in their heels, ignore the harm of their actions, and destroy our ability to trust the CDC to do the research and education we so desperately need?

Well, CDC that is entirely up to you. Rest assured, we will hold you accountable.

Thank you to everyone who contributed to a truly massive effort over the past several months. Thanks especially to co-authors Therese Russo, Art Mirin, and Jaime Seltzer who shepherded our response from concept to conclusion, and to Jenna Peeler and Diana Orem for their special assistance. Thanks to many of you who carefully reviewed our work and wrote to us with suggestions and resources allowing us to benefit from your experience and expertise. Thanks to all 7,209 co-signers who added your name to our public response.

I’m so grateful to be able to work for an organization like #MEAction, that isn’t afraid to boldly call out our government when it puts our community at risk of harm and brings the necessary strategy and resources to bear to make it happen. I was reminded again and again while working on this response how no one individual could do this alone. It took all of us coming together. Thank you to everyone who supports this organization and makes our work possible. This fight is far from over so, for those who are able, please consider financially supporting this important work.

Onwards,

Ben HsuBorger
US Advocacy Director
#MEAction

P.S. Our final response is immediately available to the public. It will also be available on regulations.gov once our submitted comment has been formally approved.

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