The CFSCC (CFS Coordinating Committee) has long failed to carry out its mission. Worse still, a secret nominating committee has covertly controlled who serves and who doesn’t serve on the committee, which seems to ensure that only political insiders could be selected, thus guaranteeing its continued incompetence.

These facts came to light recently after the release of the General Accounting Office’s (GAO) report and documents obtained by the NCF under the Freedom of Information Act (FOIA). Questions asked directly to DHHS officials have been met with very general, vague or less than complete answers, forcing us to obtain information though a FOIA. Requests of an FOIA are supposed to take 20 days. Ours took over one year and still is not complete!

Although the report was limited in scope, superficial, and biased, the most hard hitting portion was the shortcomings of the CFSCC. The GAO found that "The CFSCC has not been successful in meeting its goal: to ensure interagency communication" that the "shortcomings in how the committee has functioned have hampered its progress...". The report's assessment of the CFSCC concluded that, "The Chronic Fatigue Coordinating Committee specifically created by Congress to help facilitate coordination between the CDC, NIH and patient advocates, and to advise the Secretary, has essentially failed in its efforts."

History, Purpose and Function

According to the CFSCC Charter: "The Committee shall provide advice to the Secretary; the Assistant Secretary for Health; and the Commissioner, SSA, to assure interagency coordination and communication regarding CFS research and other related issues, facilitate increased Department and agency awareness of CFS research and educational needs, develop complementary research programs that minimize overlap, identify opportunities for collaborative and/or coordinated efforts in research and education, and develop informed responses to constituency groups regarding HHS and SSA efforts and progress." In 1990, HHS Assistant Secretary for Health assembled a group of federal researchers and in 1994 added nonfederal scientists and patient advocates as consultants in order to form an interagency committee. Then in 1996, the Secretary of HHS chartered the CFSCC, in part, to ensure coordination and communication regarding CFS. The committee consists of seven members, appointed by the Secretary, and five ex-officio members.

CFSCC Consists Of The Following Composition

The entire committee consists of twelve members. Of the seven appointed members, three are biomedical research scientists; two have expertise in health care services or disability issues or represent private health care services insurers; and two represent voluntary organizations that serve people with CFS. Members are invited to serve for overlapping 4-year terms. The ex-officio members are representatives from CDC, NIH, the Food and Drug Administration (FDA), and Health Resources and Services Administration.

Mounting Concerns

Historically patients have questioned the functioning and effectiveness of this committee. The meetings are directionless and non-productive. At most meetings no motions were made nor votes taken. Kristin Thorson’s resignation from the CFSCC validated our suspicions. In her letter of resignation she states:  "I am resigning from the CFSCC because the committee is nothing other than a facade, set up to deceive patients into believing that the government cares about the serious issues that plague them. The charter for the CFSCC says that its mission is to provide advice to the Secretary of Health. During the two years that I have served on the CFSCC, this mission has never been followed. In fact, I am at a loss to think of anything that the committee has done for the benefit of patients."

At one of the meetings, I once asked Dr. Curlin what exactly was sent to the secretary after the meetings. He replied that a copy of the minutes was sent to the secretary. In all fairness to Secretary Shalala, she is much too busy to read through some 50 plus pages of minutes and attachments. It is unconscionable that the committee has never bothered to issue a report or executive summary. The GAO report found that the CFSCC has only made three recommendations to HHS Secretary and none have focused on interagency coordination.

The GAO also showed that the CFSCC has failed to discuss agency reports and public testimony, develop recommendations for action, or develop continuity in leadership. Much of the meetings time is spent on agency reports, yet agency representatives rarely if ever question or discuss information in each others presentations. Meeting minutes clearly reflect NO CONSIDERATION OF ISSUES RAISED DURING THE PUBLIC TESTIMONY PORTION OF THE MEETING.

Selection Process of CFSCC Members Finally Uncovered

The actual process has long been an enigma to the patient community. Questions asked directly of DHHS officials have been met with vague or less than complete answers. The actual process has long been shrouded in secrecy despite numerous questions. Federal guidelines emphasize the goal of attaining "balanced membership of all interested parties." While this does not specifically require the inclusion of any specific individual or organization, it does convey an intended sense of fairness.

It appears that only those affiliated with or nominated by the CAA have been appointed to the CFSCC (with the exception of Kristin Thorson who resigned in disgust). For those reasons, we filed a FOIA request for this information. After more than a year(FOIAs are supposed to take no more than 20 days by law) we have received some of the documents and some are still undergoing review by the agency FOIA officers awaiting determination of releasability.

The selection of CFSCC members has been done through a review group created by DHHS comprised of Federal and non-Federal members to review the nomination packages. The reviewers then rank the applicants by assigning a numerical score using qualitative/quantitave score strata from 0-10, with 0 being unqualified and 10 being highly qualified. Scores are meant to reflect the credentials of the individual in comparison with other individuals within a particular category and a consideration of an individual's potential contributions to the activities of the committee in their respective category. The Secretary makes the selection on the basis of the scores. Were the committee members selected for their unbiased viewpoints so they would rely only on the information given, there would have been no need for secrecy.

The Federal members of the review group are :

• Dr. Brian Mahy (CDC - NCID)
• Dr. George T. Curlin (NIH - DMID)
• Dr. Patrick McNeilly (OASH)
• Dr. Joseph McDade (CDC - NCID)

Patient reviewers are:

• Ms. Patricia Blankenship
• Mr. John Herd

Dismiss Current CFSCC Members Or Abolish It!

This committee has been a travesty and has been quite the boondoggle. Expressions of concerns over problems or concerns regarding CFS issues either to DHHS or Congress are automatically referred back to the CFSCC, which has been proven to go nowhere. In essence it has been an obstacle to progress. Following the GAO report we requested that all current CFSCC members are dismissed due to their proven incompetence.