Ninety-one days have passed since the last CFS Advisory Committee meeting. As of the date and time of this post, none of the materials related to the meeting have been posted on the CFSAC website.
Federal law requires that the Designated Federal Officer ensure that detailed minutes of all public meetings are maintained and available to the public. 5 U.S.C. App. § 10(c). The federal regulations require that the minutes are certified within ninety calendar days of the meeting. 41 C.F.R. § 102-3.165(c). The most recent version of FACA Management Handbook (.doc file) for the Department of Health and Human Service available online states that the minutes should be completed between sixty and ninety days after the meeting.
Dr. Nancy Lee, the Designated Federal Officer of CFSAC, has failed to comply with these provisions as of the date and time of this post. And it is not only the minutes from the May 2013 CFSAC meeting at issue. We also do not have the presentations or the public testimony from the meeting. We also do not have the “High Priority Recommendations” document approved by the CFSAC at the meeting. You may recall that the content of that document was not posted at the meeting and was not read into the record. I can only make an educated guess as to the precise contents of the document.
This is not a mere technicality. The purpose of the regulations is to ensure that the public has reasonable access to the work of the advisory committee. Having access to this record is very important. For example, dozens of organizations and advocates requested that the General Counsel investigate the allegations (made on the record at the May meeting) that the DFO had intimidated three voting members of the CFSAC. But we had to produce our own transcript of that part of the meeting, and there is still no official record. All of the presentations and public comment are also inaccessible in print.
I have no evidence that there is malicious intent behind the failure to comply with these regulations. But it certainly creates the impression that, once again, we are at the bottom of someone’s priority list. With all the professional staff that attend the meeting, I can think of no reason why the minutes and other materials should not be available to us by now.
Update, August 23, 2013: Some time after close of business August 22nd, the High Priority List (pdf) was finally posted on the CFSAC meetings page. I’ll post an analysis soon. Still no minutes or presentations.
Update, August 25, 2013: The minutes for the May 2013 meeting have now been posted for day one (pdf) and day two (pdf). Still no presentations, including public comment.
Tank you so much for bringing this to light.
Thank you so much for bringing this to light. This is important stuff and yes I am curious about how they handle the inconvenient truth.
Damn good work Jennie! Do I have your permission to reprint your posts on FB and PH? Our viewers would be enlightened. I hope your health and spirits are strong Jennie. Thanks on behalf of a million of us for the truly amazing work that you do. Rich Carson
Thanks Rich! You can share links to my posts wherever you want. For a full reprint, just email me first to discuss. Thanks!
It has been 7,665 days since the U.S. government started censoring NON HIV AIDS cases (which, if you don’t know, get ICD-coded “CFS”).
Don’t hold your breathe on allied NATO government caring what about lawfulness of minutes.
War is a crime –> The Gulf War.
Is there anyway to get statistics on how recommendations made by other DHHS scientific advisory groups fare?
Excellent question, Kelly. There is a way to get this, but it is laborious and is based on HHS self-reported numbers (which may or may not match what the committees think). It’s complicated also because of the differences among discretionary and statutory committees. I’ll do some digging.
Jennie,
Thank you for keeping up with this. The question is – what is the community going to do about this? I would support a movement to call for Nancy Lee’s resignation on the grounds of disinterest and incompetence. We must not forget, this is the woman who said that answering emails about having an FDA stakeholders’ meeting was “keeping her from her real work.” Without some kind of action on our part, we will be in the same place with CFSAC in 10 more years as we are now, which is barely any better than we were 10 years ago. It is simply a government shield to hide behind to tell us how much they are doing for us and that CFSAC is the route we need to take to make our concerns known. Sept 11, 2012 from Howard Koh, MD, Asst. Secretary for Health – HHS: “CFSAC provides a mechanism to ensure stakeholders are engaged and have opportunities to offer input. Representatives from patient organizations gave presentations at the last CFSAC meeting; this practice will continue for future meetings.”
Billie