Advocacy Alert: 06/22/2004

The federal government’s CFS Advisory Committee met on June 21, 2004 to formulate recommendations on research and education, receive updates from health agency representatives. The committee also heard public testimony from persons with chronic fatigue and immune dysfunction syndrome (CFIDS, also known as chronic fatigue syndrome, CFS, myalgic encephalomyelitis and ME) and their family members.

The committee reviewed draft recommendations prepared by separate subcommittees evaluating current education activities and research efforts on CFIDS conducted by the National Institutes of Health (NIH), Centers for Disease Control (CDC), Health Resources and Services Administration (HRSA), Food and Drug Administration (FDA) and Social Security Administration (SSA). Chairman of the CFSAC, Dr. David Bell , led discussion about possible strategies presented by subcommittee chairmen that seek to strengthen federally sponsored CFIDS research and education of health care providers and the public. Dozens of strategies were considered and the committee will refine and prioritize a list of approximately 15 of those judged most worthy. At the next meeting, tentatively scheduled for September 27, 2004 , the committee will present and approve a final list of recommendations that will then be put forward to Secretary for Health Dr. Tommy Thompson. Public comment on the recommendations will be solicited later this summer.

A presentation made by Dr. Donna Pickett of the National Center for Health Statistics focused on current classification of CFS in the International Code of Diseases (ICD). While the rest of the world utilizes a version of the ICD referred to as ICD-10, the U.S. uses a modification of an earlier version, ICD-9-CM. In the ICD-9-CM, CFS is listed under “Signs and Symptoms” at “780.71--chronic fatigue.” However, in the ICD-10 CFS is indexed to G93.3, a listing under “Diseases of the Nervous System” along with “benign myalgic encephalomyelitis” and “postviral fatigue syndrome.” Codes are used by physician groups, hospitals and insurers to track morbidity and mortality rates due to various conditions. The CFSAC will consider among its recommendations whether to urge adoption by the U.S. of the ICD-10 coding for CFS used internationally.

Dr. Dharam Ablashi presented a series of recommendations from the American Association of Chronic Fatigue Syndrome, an organization of researchers and providers that fosters research, publishes a newsletter and sponsors a bi-annual research, clinical and patient conference. A dozen members of the public presented testimony on a variety of subjects relevant to the committee’s work and invited guests Jon Sterling, chairman of the board of the CFIDS Association of America, Kim McCleary, the Association’s president & CEO, and Jill McLaughlin, executive director of the National CFIDS Foundation, participated throughout the meeting, including the session during which committee members offered, questioned and revised draft recommendations. The CFIDS Association offered sets of recommendations for research and education that were considered by the committee. Several strategies were reflected in their working draft.

The NIH’s representative, Dr. Eleanor Hanna, announced that NIH would issue a Request for Applications on CFS research initiatives in November. RFAs carry a designated fund for successful proposals, making them more attractive to prospective researchers than more general Program Announcements that do not carry set-aside funds. Dr. Drue Barrett, alternate representative from the CDC, notified the committee that a new report from CDC researchers documented an annual loss to the economy due to CFS of $9.1 billion. For more on this study, visit http://www.cfids.org/advocacy/2004/c-act_06212004.asp.

The CFSAC has met quarterly since its inaugural meeting on September 29, 2003. Its charter will expire on September 5, 2004, although CFSAC executive secretary Dr. Larry Fields indicated that the process to renew the charter was under way and no obstacles to timely renewal were anticipated. Further information about the CFSAC and a roster of its members can be found at http://www.cfids.org/advocacy/CFSAC.asp. A more complete report on the June 21 meeting will be included in the July issue of CFIDS Link. To sign up for the Link, the Association’s monthly e-newsletter, visit http://www.cfids.org/subscribe.asp.

The CFIDS Association of America
June 22, 2004