Swift Response

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.


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11 Responses to Swift Response

  1. Chris Heppner says:

    Congratulations and many thanks, Jennie; you are doing the advocacy work that CAA should still be doing–if it ever did! Thanks again, Chris

  2. Jocelyn W. says:

    Bravo, Jennie, and thank you so much. Will look forward to the discussion.

  3. Pingback: CFSAC’s Swift Response | Speak Up About ME

  4. Amy S says:

    Great work, Jennie! Thank you!!

  5. LJ says:

    Congrats,Jennie! Look forward to your summaries!

  6. Matina says:

    Awesome! You rock!

  7. Valerie Free says:

    Hi Jennie,
    Wonderful job and we will look for the next summaries to learn more about the priorities.

  8. POTSNJ says:

    Nice work, Jennie! and kudos to Nancy Lee for responding in a timely manner.

  9. Rivka says:

    Excellent work.

  10. beaker says:

    Thanks Jennie !

  11. Jane L. says:

    Great job and result, thank you for your hard work!

Comments are closed.