I delivered this public comment by telephone at the December 3, 2014 CFS Advisory Committee meeting.
This committee’s legitimacy is at stake. Nine months ago, your March meeting recommendations were substantially altered after your public vote. Documentary evidence that I obtained through FOIA suggests that Dr. Nancy Lee and Dr. Gailen Marshall did this together. Three months ago, I brought this brazen violation of federal law to Dr. Levine’s attention, and two months ago I asked the General Counsel to intervene.
Two days ago, Dr. Lee informed me that your correct and legal recommendations have still not been sent to the Secretary. She said that Secretary Burwell wants to receive your recommendations along with the agencies’ responses to them, and that it will take yet more time to formulate responses to your nine-month old recommendations. Now, this does not make much sense to me. The communication becomes more of an informational memo if the agency responses are given to the Secretary at the same time she receives your recommendations.
The real question, though, is why is the work of this committee repeatedly undermined by HHS staff? It can’t be fear, because if the Designated Federal Officer does not like your recommendations, she may simply violate the Federal Advisory Committee Act and change them. And after getting caught? She will simply drag her feet and take months to getting around to fixing the situation that she created in the first place, with no apparent consequences.
This contempt and disdain is not limited to you, of course. ME/CFS advocates are so irrelevant that HHS does not bother to provide you with our written testimony with even 24 hours to review it in advance of your meetings – another FACA violation that I was promised, in writing, would be remedied. Indeed, the FACA violations are stacking up like cordwood at this point. One legal expert I consulted could only describe this situation as “bizarre.”
This committee is on the verge of allowing itself to be turned into window dressing and a rubber stamp. Why should advocates spend precious energy writing testimony if you can’t read it before your meetings? And why should you invest so much time in working groups and crafting recommendations, if the DFO can change what she or HHS doesn’t like?
CFSAC members, you must stand up and defend the integrity of your work. I still believe this committee can make a positive difference in federal policies and in the lives of ME/CFS patients. But that starts with you. I am one disabled person, and you can surely do so much more than me. ME/CFS patients and advocates need you to fight for us. Please don’t let your work and this Committee be eviscerated any further. I hope we can count on you.