By Lisa Petrison
On December 14, 2013, I sent a letter to U.S. Health and Human Services Secretary Kathleen Sebelius, bringing to her attention problems associated with the CFSAC webinar held several days earlier. The text of the letter is here.
Below is a letter in response, date stamped January 10, 2014, and signed by Assistant Secretary for Health Howard K. Koh.
The original of the letter is here. (If you get a black screen, press “Download” and you will be able to read the letter.)
According to my reading, this letter seems to be taking the position that HHS is doing everything right with regard to this disease and that we thus have no reason to be unhappy about anything.
I do not agree.
[mail to: firstname.lastname@example.org]
Lisa Petrison, Ph.D.
Dear Ms. Petrison,
Secretary Sebelius has asked me to thank you for your letter regarding the recent Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting and to respond directly to you. I appreciate your feedback on the new webinar format and the operations of the committee.
I understand that you have some concerns with the abbreviated webinar that was held on December 10, 2013. Though the closing of the federal government on December 9, 2013, was an unfortunate and unavoidable circumstance, the Department of Health and Human Services (HHS) sought to honor its commitment to CFSAC members, patients, and stakeholders to hold its second meeting for 2013 as planned. To do so, portions of the agenda, including patient testimony, had to be modified in order to fit into a compressed schedule and allow time for the committee to conduct its business.
In 2013, an effort was made by HHS management officials to encourage the Department’s offices and agencies to expand the use of virtual technology to improve public participation in the federal advisory committee process. The goals for this effort were to provide more cost-effective means to engage public participation in open federal advisory committee meetings. Though CFSAC had been utilizing webcasting technology since 2009, its staff sought new ways to better address these goals to coincide with similar efforts being undertaken by other components within HHS.
I also understand that you have some concerns with the management of CFSAC by Designated Federal Officer, Dr. Nancy Lee. As you are aware, I have investigated the inquiry regarding Dr. Lee’s interactions with committee members and have found her conduct to be appropriate given her responsibility to ensure that committee members understand their roles and applicable policies under the Federal Advisory Committee Act.
Finally, I want to address your statement regarding the ongoing Institute of Medicine (IOM) study on diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Any disease definitions, recommendations, and/or reports that result from that process will be based on the findings of an independent committee of experts and not the government. The IOM is a non-governmental organization and its provisional committee roster does not include any federal officials.
Than you again for your letter. Federal advisory committees play a key role in engaging the public in the work of the Department. I appreciate your interest and engagement in HHS efforts to address ME/CFS.
Howard K. Koh, M.D., M.P.H.
Assistant Secretary for Health