On February 18th, Ms. Spotila (on OccupyCFS) had this post http://www.occupycfs.com/2013/02/18/a-public-citizen/ about a letter from Public Citizen to DHHS and the CFSAC encouraging them to remove the High Priorities list in part because it had not been discussed in public.
Today, Ms. Spotila has shared the response from DHHS to Public Citizen in this post http://www.occupycfs.com/2013/03/01/swift-response/ (reposted below):
I am pleased to share with you the response from HHS to Public Citizen’s letter to the Acting General Counsel about the CFSAC High Priority Recommendations. Public Citizen wrote to the Acting General Counsel on my behalf on February 14th, protesting the way CFSAC created and used the High Priority Recommendations in violation of FACA and its own charter.
On February 22, Dr. Nancy Lee responded to Public Citizen on behalf of the Acting General Counsel with this letter (pdf link):
Michael A. Carome, M.D.
Public Citizen’s Health Research Group
Dear Dr. Carome,
On behalf of Mr. William B. Schultz, Acting General Counsel and Dr. Howard K. Koh, Assistant Secretary for Health, Department of Health and Human Services, I am writing to thank you for your letter of February 14, 2013. As you noted in the letter, the document posted on the CFSAC website titled “High Priority Recommendations from CFSAC” has not been discussed or approved by the full Chronic Fatigue Syndrome Advisory Committee (CFSAC) at a public meeting. Our highest priority is to ensure that CFSAC operates openly and in compliance with the Federal Advisory Committee Act (FACA) and CFSAC’s charter.
We plan to present the document at the 2013 spring CFSAC meeting for full discussion. The document has been removed from the CFSAC website.
Nancy C. Lee, M.D.
Designated Federal Officer – CFSAC
As I had hoped, involving Public Citizen in this matter resulted in swift and complete correction by HHS. Based on my previous experience sending letters to CFSAC and HHS, I expected it would take months to get any sort of reply if I had written to CFSAC about this myself. As is usually the case, a letter from an organization to the General Counsel resulted in resolution of the matter in less than two weeks. Again, I extend my thanks to Public Citizen for their help.
We now have a chance to offer input on this set of priority recommendations. The document will be presented at the spring CFSAC meeting for full discussion. Through public comment, we have the opportunity to express our opinions about the document. What recommendations do you think should have the highest priority designation?
CFSAC has made more than 70 recommendations over the past nine years. But most recommendations fall into categories like research and education. Some recommendations are obsolete or completed. Between now and the spring CFSAC meeting (which has not been scheduled, to my knowledge), I will offer summaries of these categories so that you can more easily identify the recommendations you think are most important. I suspect most of us will agree on the general issues, and I would love to see general discussion and coordination among advocates in advance of this meeting. Let’s leave no doubt in the CFSAC’s mind about what the public thinks their highest priorities should be.”
Let’s keep an eye on Ms. Spotila’s blog (http://www.occupycfs.com/) for the summaries she will provide.
Meanwhile, given all of the recommendations (http://www.hhs.gov/advcomcfs/recommendations/index.html )made by the CFSAC over the years (and a chart of them is available here: http://www.hhs.gov/advcomcfs/recommendations/cfsac_recommendationschart.pdf – are the ones marked completed really completed, are some obsolete?), we agree with Ms. Spotila that advocates could greatly assist the CFSAC by assessing them ahead of the Spring 2013 CFSAC Meeting.
Look over the recommendations, and thinking in terms of what the CFSAC can (according to their charter http://www.hhs.gov/advcomcfs/charter/index.html ) do and what the applicable agencies can do, what sorts of priorities would you assign to recommendations about research, or education or the CDC toolkit or ?