How Did They Get Here?
I’ve been following the work of the CFS Advisory Committee closely, and after the latest group of new members were appointed I wondered who had nominated them. I’ve done some research, and the answer might surprise you.
Just getting this information took some effort. I emailed the CFSAC on June 25, 2012 requesting a list identifying what individual, organization, agency, or entity nominated each of the current voting members of the CFSAC. On July 17th, the CFSAC responded:
We do not keep records on which individuals or organizations nominated the CFSAC members. Some members nominated themselves, which is definitely permitted. (emphasis added)
I was rather surprised at the claim that the Committee did not maintain records on nominations, and in fact I found that General Records Schedule 26 requires that information on requests for approval of nominees and appointment documents for individual committee members be maintained for six years. Either the Committee staff was violating federal records requirements by not maintaining those files, or their response to my request was misleading. I did what any determined ex-lawyer would do: I filed a FOIA request on July 23rd. On September 20th, I received copies of the letters and emails that nominated the current voting members of the Committee. Here is what I found:
- Dr. Gailen Marshall, Chairman of the CFSAC was nominated by Dr. Ronald Glaser. At the time of he submitted this nomination (September 2009), Dr. Glaser was serving as a member of the CFSAC. Dr. Marshall was appointed to the Committee on May 10, 2010.
- Dr. Adrian Casillas was nominated by Dr. Gailen Marshall in August 2011 (while Dr. Marshall was serving as a member) and was appointed to the Committee on June 13, 2012
- Dr. Dane Cook was nominated by the CFIDS Association in September 2009, and was appointed to the Committee on May 10, 2010.
- Dr. Lisa Corbin was nominated by Dr. Ermias Belay of the Centers for Disease Control in August 2011. Dr. Belay first served as the ex officio representative from CDC to the CFSAC several months later in November 2011. Dr. Corbin was appointed to the CFSAC on June 13, 2012.
- Dr. Jordan Dimitrikoff was nominated by Dr. Hope Ricciotti, Vice Chair of the Department of Obstetrics and Gynecology at Harvard Medical School in September 2010. He was appointed to the Committee on May 10, 2011.
- Dr. Mary Ann Fletcher received multiple nominations over the course of several years. In September 2009, both Dr. Glaser (a member of the CFSAC at the time) and Dr. Fred Friedberg of the IACFS/ME submitted letters in support of her nomination. In September 2010, the Miami CFIDS Support & Advocacy Group nominated Dr. Fletcher, and two individuals also wrote in support. Finally in August 2011, the Miami group nominated her again four individuals wrote in support. Dr. Fletcher was finally appointed to the Committee on June 13, 2012.
- Ms. Eileen Holderman was nominated by P.A.N.D.O.R.A. in September 2009 and was appointed to the Committee on May 10, 2010.
- Mr. Steven Krafchick was also nominated by P.A.N.D.O.R.A. in September 2009 and was appointed to the Committee on July 1, 2010.
- Dr. Susan Levine nominated herself to the Committee in September 2009 and was appointed to the Committee on May 10, 2010.
- Dr. Ann Vincent was nominated in October 2010 by Dr. J. Michael Miller of the Centers for Disease Control. Dr. Miller was serving as the CDC’s ex officio representative to the Committee at the time. Dr. Vincent was appointed to the Committee on May 10, 2010
- Dr. Jacqueline Rose nominated herself to the Committee in August 2011. She was appointed on June 13, 2012, but then resigned several weeks later.
I am struck by the distribution of nomination sources: two members (Dr. Vincent and Dr. Corbin) were nominated by the serving ex officio representative from CDC; two members (Dr. Marshall and Dr. Casillas) were nominated by serving voting members of the Committee; four members (Dr. Cook, Mrs. Holderman, Mr. Krafchick, and Dr. Fletcher) were nominated by CFS organizations; two members nominated themselves (Dr. Levine and Dr. Rose); and the last member (Dr. Dimitrikoff) was nominated by a colleague at Harvard. This does not look random to me. It looks more like a score card with careful selection among the different sources. Consider the 2012 appointees: one successful nomination each from CDC, a Committee member, a CFS organization, and a self-nominee.
I am concerned that most of the researchers and doctors being appointed do not have CFS as their primary focus. In nominating Dr. Vincent and Dr. Corbin, CDC highlighted their experience in integrative medicine, and both of them are directors of clinics that focus on fibromyalgia and chronic fatigue patients. Dr. Dimitrikoff is an expert in chronic pelvic pain syndrome, and his CFS experience is based on its overlap with CPPS. Dr. Marshall has treated CFS patients, but Dr. Glaser’s nomination letter said his research focus in on psychological dysfunction and immunoregulatory changes in a variety of conditions, including CFS. I’ve previously reported on Dr. Casillas’s expertise in immunology but not focused on CFS. Only Dr. Cook and Dr. Fletcher conduct a great deal of research on CFS, and Dr. Levine treats many CFS patients. Dr. Fletcher is the only CFS expert to be appointed to the Committee since 2010.
Another trend is the decreasing success of nominations from CFS organizations. While four current Committee members were nominated by organizations, Dr. Fletcher is the only successful nominee since 2010. With the addition of three non-voting organization representatives to the Committee in the last charter revision, I am very concerned that organization nominees will have less likelihood of success.
There is a vacancy on the Committee left by Dr. Rose’s resignation. The Committee bylaws (not presently available on their website) require that a vacancy be filled by appointment within 90 days. The CFSAC has not released the actual resignation date, but the 90 days must be expiring soon if it has not already. In a letter to me, Assistant Secretary Koh stated that the 2011 nominations were being considered to fill the vacancy. Will we see a new appointment at the meeting on October 3rd?
Does the source of a nomination matter? I argue that in this context, it does. The trend in the last two years has been towards non-CFS experts, including two successful nominations from CDC. At the same time, Dr. Casillas told me that the new members received no briefing or materials in advance of their first meeting in June. Mr. Krafchick complained at that meeting that he had not received materials in advance either. In my opinion, the Committee must ensure that its membership is sufficiently educated about the issues that come before it. If non-experts are appointed, they must receive adequate preparation and briefings on the issues. Otherwise, the combination of lack of subject matter expertise and lack of advance preparation does not bode well for the work of the Committee, at least not if we hope for recommendations that address the unique scientific and social issues of CFS.