Today, six advocates and myself joined together to send the following letter to Assistant Secretary for Health Howard Koh regarding the recent vacancy on the CFS Advisory Committee and a proposed change to the Committee’s charter.
Dear Dr. Koh,
We are writing regarding two issues related to membership on the CFS Advisory Committee that require your attention: filling the recent vacancy and the proposed addition to the Committee of non-voting representatives from one or more organizations serving people with ME/CFS. As you stated at the November 8, 2011 meeting of the Committee, the expertise of committee members is needed to address the many critical and challenging areas of ME/CFS. We agree with you, and as people directly affected by the work of the Committee we hope you will consider our input.
Reexamine previous nominees to fill vacancy
On July 13, 2012, the Committee staff announced via its email listserv that Dr. Jacqueline Rose has resigned from the Committee, and that the process of finding a replacement has begun. This announcement did not specify whether nominations would be sought from the public. The Committee bylaws require “If a vacancy occurs among the appointed members, the Secretary (or designee) shall make an appointment to fill the vacancy within 90 days from the date the vacancy occurs.”
Given the requirement that a replacement be appointed within 90 days, we urge you to immediately issue a public call for nominations. Failing that, we urge you to reexamine the nominations submitted by the public in response to the 2011 request and select a new member from among those nominations.
New appointee should have biomedical research experience
In order to comply with the Committee’s charter membership requirements, the new appointee should be a research scientist. The charter and bylaws require: “Of the eleven members, seven shall be biomedical research scientists with demonstrated expertise in biomedical research applicable to CFS; four shall be individuals with expertise in health care delivery, private health care services or insurers, or voluntary organizations concerned with the problems of individuals with CFS.”
Based on your introduction of Dr. Rose at the June 13, 2012 meeting as a retired anesthesiologist from the Veterans Administration and a member of the CFIDS Association, it appears that she was appointed as an individual with expertise in voluntary organizations and/or expertise in health care delivery. However, an examination of the current membership shows that this vacancy should be filled with a research scientist in order to maintain the charter-mandated balance.
Specifically, there are six current members who are biomedical research scientists: Dr. Gailen Marshall, Dr. Adrian Casillas, Dr. Dane Cook, Dr. Jordan Dimitrikoff, Dr. Mary Ann Fletcher, and Dr. Ann Vincent. Two members are experts in health care delivery: Dr. Lisa Corbin and Dr. Susan Levine. Ms. Eileen Holderman has expertise with voluntary organizations serving people with ME/CFS. Mr. Steven Krafchick is an attorney specializing in disability benefits for ME/CFS and similar conditions that give him expertise in insurance issues.
As you can see, the vacancy left by Dr. Rose must be filled with an appointee who is a biomedical researcher. Again, if there will be no call for nominations, we urge you to reexamine the nominations from 2011 and select a researcher with demonstrated expertise in ME/CFS.
Proposed Charter Revision
At the June 13-14, 2012 meeting, Dr. Lee said that the public would have the opportunity to comment on proposed changes to the Committee charter. We received the following email from the CFSAC staff on July 17th stating, “It turns out that Dr. Lee was mistaken when she gave the impression that public comment was part of the usual process for charter revision . . . That said, we welcome your comments and suggestions, provided to us via firstname.lastname@example.org. If you are interested, please get the comments to us in the next 2 weeks so that we can meet the deadlines.”
To that end, we are providing these comments on the only known proposed revision to the charter. No draft or list of proposed changes has been provided, despite our request, and the two-week deadline severely limited our ability to research other possible changes. We also note the sharp contrast with the charter revision process in 2010 during which a draft was provided and discussed at a Committee meeting, and public comment was expressly invited. At this time, we can only comment on the change both you and Dr. Lee have discussed publicly.
Addition of representatives from non-profit organizations
At the November 8, 2011 meeting, you said, “DHHS wants to improve communication with non-governmental organizations (NGOs) related to CFS and noted that Dr. Lee is exploring the legal, logistical, charter, and bylaw issues connected with adding more NGO voices to the CFSAC.” Dr. Lee repeated the proposal on November 9, 2011. This suggested change was also raised at the June 13-14, 2012 meeting. We oppose this proposal for three reasons, and request modification of the proposal as detailed below.
First, as noted above, the Committee charter already provides that individuals with expertise in voluntary organizations are eligible to serve as voting members. Given the nature of the Committee’s work in advising the Secretary, the expertise and knowledge of such individuals is vital to the functioning of the Committee. It is critical that all members with this expertise be voting members of the Committee so that they can fully participate in making recommendations to the Secretary. Adding organization representatives without voting status creates a second-class of participants, and this runs the risk of diluting the voices of those with voting status or supplanting them altogether. Over time, individuals with this expertise may be less likely to secure voting slots due to the token presence of non-voting representatives of the organizations. This will impair the Committee’s ability to fulfill its charge.
Second, the expertise of the voluntary organizations is already available to the Committee. Both individuals and organizations have participated in recent committee work, including the examination of the CDC website and the presentation at the June 14, 2012 meeting. Task or issue-specific non-voting expertise can and should be sought by the committee, and no charter change is required to do so.
Third, the way this proposed change would be implemented is not at all clear. How many organizations would be represented? What eligibility criteria will be established to determine the pool of potential nominees? How many of the dozens of groups would be eligible? How would members be selected and in what order? There is tremendous variety among the non-profits, including mission, budget, geographic focus, and tenure. It will be difficult to strike a fair balance among the groups, and some organizations may have expertise more relevant to the tasks of the Committee than others.
If you or the Committee wishes to avail yourselves of the expertise and knowledge of the non-profit organizations, then by all means do so. Many organizations have repeatedly offered their expertise to the Committee. If your goal is, as you stated in November 2011, to improve communication between the Committee and the community, then by all means do so. However, creating this proposed ex officio category of membership will not establish what is needed for improved communication between the patient community and the Department.
The patient community attends and watches Committee meetings with great interest. Adding non-voting organization representatives to the Committee will do little to improve communication from the Department to the community. What is lacking is two-way communication, and the perspectives of the community being seriously considered by the Committee and the Department. The best way to improve this two-way communication is to add additional voting positions to the Committee. Revise the charter and bylaws to expand the number of voting members with demonstrated expertise in non-profit organizations related to ME/CFS, and select those members from public nominations. By doing this, you will not only improve communication between the Committee and the ME/CFS community, but will also give the Committee the benefit of that expertise in its formulation of recommendations to the Secretary.
Please do not hesitate to contact me at XXX-XXX-XXXX if you have any questions or if I can be of any assistance.
I look forward to your reply.
Jennifer Spotila, and joined by
Charlotte von Salis
cc: Dr. Nancy Lee
 Minutes of the CFS Advisory Committee, November 8, 2011, p. 17.
 Bylaws of the CFS Advisory Committee, Section III.
 Federal Register Notice, July 18, 2011.
 Charter of the CFS Advisory Committee, Membership and Designation, Filed September 5, 2010.
 Email from CFSAC Support Team to Jennie Spotila, July 17, 2012.
 Minutes of the CFS Advisory Committee, November 8, 2011, p. 18.
 Minutes of the CFS Advisory Committee, November 9, 2011, p. 4.