Delia and anyone else interested, there's a Facebook group that's been in operation for about two weeks now you might want to join. It's called "U.S. Campaign for Myalgic Encephalomyelitis (M.E.)
https://www.facebook.com/groups/624505110934978/
It appears to be closed. To be honest, i've been so sick I never learned how to use Facebook...
I'd very much like to be a part of a single focus group on resisting/fighting the IOM