I am continuing to release documents (this time, emails only) I received from HHS in response to my P2P FOIA request.
A lot of these email exchanges will show clearly the disdain, condescension and hostility towards our community.
They also demonstrate the fact that HHS is not one bit interested in our comments or even questions. HHS blew off legitimate patient concerns by replying with canned talking points—“TPs”—and when patients asked for meaningful clarification (since their questions had not been answered), Susan Maier decided that there was “[n]o need to answer them directly.” Filing those patient emails away would suffice (page 72). So much for the theory that our input will be heard.
Quoting Anne Rancourt of NIH (page 78): “We also recently had a FOIA request on CFS.” What do you think this means? Could that be NIH speak for “Be careful what you put into writing?”
View original post 2 more words