Statement of the Appointed Members of the
DHHS Chronic Fatigue Syndrome Coordinating Committee

February 8, 2000

As five of seven of Secretary Shalala’s appointed members of this committee, we have been invited to join with other appointees and representatives from five health agencies to help the Department of Health and Human Services make informed decisions about matters that relate to chronic fatigue syndrome. We have participated in good faith, but to tell you frankly, we have met with great resistance. We have been shut out. We have been lied to. We have been treated with hostility. Worse yet, the efforts of this committee and the efforts of the represented agencies have brought us no closer to diagnostic markers or effective treatments for the 800,000 Americans who suffer daily from the effects of this debilitating illness. The patient community, in fact, largely views this committee’s meetings as pointless discussions that lead nowhere.

We are deeply concerned that problems evidenced by the CDC funding debacle and the NIH’s lack of innovation and dwindling CFS research portfolio are symptomatic of an Administration that has failed to take CFS as a seriously disabling, complex and prevalent disease.

The accountability on this issue belongs to you as chair of this committee, yet we infrequently see you and rarely have the opportunity to speak with you directly. We are coming to you as the nation’s chief medical officer — we need your help and we need your leadership.

We have identified some problems, but to bring you problems without proposed solutions would be negligent. Here are our recommendations for immediate reforms that would help set a new pace for vital work in this area that is long past due.

1. We request that you personally chair this committee to provide leadership from the Department needed to initiate effective coordination and appropriate oversight. We also request that Secretary Shalala meet with the committee at its next meeting to demonstrate her commitment to meaningful progress in CFS research and education.
   
   
2. The CDC’s plan for its re-invigorated research and education programs are to be presented this morning. We request an opportunity for the committee to review the plan, have adequate time to reflect on it and report back with our recommendations to ensure the effective investment of baseline and restored funding.
   
   
3. We urge that a date be set for a bona fide State of the Science meeting that accurately reflects the breadth of research in the field, and that one of the appointed members of this committee serve as co-chair to ensure the involvement of this committee in the planning and execution of the meeting. We strongly recommend that this session address not only pathophysiology, but treatment as well. Following the State of the Science meeting, this committee, or a working group of it, should assist NIH in crafting a plan for multi-disciplinary research AND means of recruiting qualified investigators to this field.

Dr. Satcher, we have gotten everyone’s attention — Congress, the press, the Inspector General — except yours and Dr. Shalala’s. On behalf of the 800,000 people with CFS, please take immediate action on these requests to generate momentum in the Department’s response to this debilitating illness.

Respectfully yours,
K. Kimberly Kenney
Nancy G. Klimas, M.D.
Janet Montgomery
Peter C. Rowe, M.D.
Jonathan Sterling