Thoughts About M.E.: HHS Violates FACA and Unduly Influences CFSAC

[Jeannette Burmeister]

On the eve of another CFSAC meeting: Another FACA violation by CFSAC plus undue influence on CFSAC by HHS.

"So, let’s look at this more closely. Subjectively ... inflammatory, negative or derogatory comments will not even be sent to the Secretary? Nothing “negative?” Are these people serious? What is this, the editorial policy of Pravda? If a Secretary’s ego is so fragile that she can’t handle any criticism of anybody ..., maybe she’s in the wrong line of work. Patients are suffering day in and day out and the highest-ranking government official in the health department needs to be protected from the truth? Why is it that HHS is so ashamed of the M.E. reality that they have created? If they had done their jobs, shouldn’t they be proud?"

More at:

http://thoughtsaboutme.com/2015/08/18/oops-they-did-it-again-cfsac-violates-faca/

 

[Esther12]

“... we consider the PACE Trial to be “fruits of the poisonous tree.” (p. 43)

PACE criticism removed.

 

[alex3619]

This is clearly spin and public relations management. CFSAC should have its reports delivered unedited except for grammar, spelling and formatting. Anything else is egregious censorship. Given the history of CFS and ME, it can only be expected that the patient community will take exception to this. To earn trust we require transparency and accountability.

 

[halcyon]

This is insane. I almost don't even care about the FACA issue compared to how the CFSAC P2P comments were edited. The very core of ME advocacy was contained in those struck out portions.

 

[jimells]

"So, let’s look at this more closely. Subjectively ... inflammatory, negative or derogatory comments will not even be sent to the Secretary? Nothing “negative?” Are these people serious?

Well, I'm sure they want to keep their promotions on schedule. Perhaps these agencies are run like the military, where the rule is "Up or Out". Also, it would be an unusual bureaucracy if they didn't tell the (political appointee) Boss what the Boss wants to hear, while the career staff people (think Collins and Fauci) continue to do whatever the hell they want.

(Jeannette, I hope your new essay means you are feeling a little better)