Blog: Occupy ME: Public Comment on Engaging People with ME

[Andy]

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 perspectives, not only about what it is like to live in an ME-afflicted body, but about the scientific and medical issues in this field. This is one reason why I am so encouraged that this field is beginning to engage people with ME as partners, because we can teach you.

I have had unique opportunities to learn how to integrate people affected by this disease into research and policy-making. When I served on the Board of the CFIDS Association, I reviewed grant proposals for strategic merit. I am an Ambassador for the Patient-Centered Outcomes Research Institute. I participate in the FDA’s Patient Representative Program. I served on this Committee’s Stakeholder Workgroup. Last year, I co-authored the paper Engaging People with ME as Partners in the Collaborative Research Centers, which is featured on the Faster Cures website as well as MEAction’s.

I list these qualifications to provide you with context for my comments today.

http://occupyme.net/2018/06/20/public-comment-on-engaging-people-with-me/

 

[Diwi9]

It was difficult to listen to the public comment today.

After Ben HsuBorger (?) from MEAction spoke, Amrit made a very stupid comment reprimanding ME non-profits for not working together and making too many demands. I was shocked because MillionsMissing just happened, followed by a huge lobbying effort...all of these actions were collaborative. She just wanted to pat the agencies on the back. It made me sick because I think she is a valuable member given her background and education. I'm still hoping for staunch allies and not people who think that they must carry a hint of disdain for PwME to be considerate "legitimate" to serve in this capacity for their own credibility with federal agents.

The second thing that caught my attention was Cindy Bateman's presentation on the "ECHO" healthcare model. She literally handed the federal agencies completed work that would have taken them two years to "study" at a huge price tag. She did it through her non-profit and said, "here...it's a great model...do something with it."

I'm left realizing that we have advocates leading the feds to water and they don't know what to do. What is happening in the UK with a debate in Parliament...we need that here in the US. We need political pressure. All we are doing is screaming into sound-proof rooms that the government has supplied to us so they don't have to hear us.