Very good question this; this was the most immediately striking thing to me about this statement, and it is an important question: just who is it that is putting this out in the name of CFSAC? It clearly is not CFSAC who has written these FAQ responses - or at least, not the CFSAC committee as I understand it. It reads as if somebody within HHS, or within CFSAC, is acting as if they
are CFSAC. As with previous HHS comments about the contract, which made false claims suggesting that the contract was what CFSAC had asked for, it appears that the name of CFSAC is being misused to give an appearance of legitimacy.
Regarding this:
PANDORA stated on its Facebook page today that the “FAQ […] addresses most of the questions we asked.”
Perhaps so, but it doesn't
answer them. It doesn't even answer the questions as they are worded in the FAQ itself. For example:
Can HHS, and all associated agencies, endorse the 2003 Canadian Consensus Criteria based on the recommendation of ME/CFS experts, patients and the International Association of CFS/ME? If not, why not?
HHS often helps disseminate clinical recommendations made by nongovernmental groups, but does not generally make formal endorsements of these guidelines. Additionally, the 2003 Canadian Consensus Criteria (CCC) do not account for scientific evidence developed since 2003. In order to ensure that the IOM considers all relevant information, HHS has requested specifically that the IOM consider the 2003 CCC in its review and deliberation, in addition to other clinical criteria for ME/CFS and recent scientific evidence.
OK: so HHS "does not
generally" "make formal endorsements" of "clinical recommendations made by nongovernmental groups".
But the question -
can it endorse the CCC, and if not, why not? - is not answered. Or perhaps we can interpret from the above that the answer is "yes, it could, if it wanted to" (since they fail to cite a reason why they can't and presumably they would do so if such a reason existed) but it doesn't want to. The only reason given is that the CCC are 10 years old - in which case, perhaps it should endorse the more recent ICC?
And this...
If the IOM contract is cancelled, will the contract funds go to ME/CFS research?
HHS has a legally binding agreement with the IOM and has committed FY2013 funds to this study. There is no way for HHS to recover or repurpose these funds.
...is not asking the question that (IIRC) Pandora has asked, and that
many advocates want to know the answer to: "[How] Can the IOM Contract be cancelled?".