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Reform Efforts Falter: Divide Grows Between Patient Community and Government Agencies over Reform


( The CFIDS community was dealt a major disappointment on Wednesday when the Health and Human Services CFS Advisory Committee issued a public statement saying they will not consider changing the controversial name “Chronic Fatigue Syndrome”. The long-criticized name has been a source of controversy since its inception in 1988. Five years ago, the HHS began the lengthy process of changing the name, forming a committee headed by researchers and physicians. The NCW (Name Change Workgroup) suggested changing the name to NDS – or Nueroendocrineimmune Dysfunction Syndrome.

In a contradictory and confusing statement, signed by Committee Chair David Bell, the CFSAC admitted there is a broad consensus that the current name is unacceptable. The release also stated that the name has played a major role in fostering an atmosphere of disrespect, apathy, and ignorance of CFIDS. The members of the committee go on to say that a change from the current name is inevitable and necessary.

However, the CFSAC expressed a desire to retain the current name, citing several reasons why they feel that reform efforts should be frozen. They feel the name change could threaten what they see a broadly “flawed”, yet “orderly” approach to research. The committee expressed concerns about “retrieval of medical information” should a new name be adopted; and finally, they felt reform may jeopardize what they see as recent funding momentum. In a short reply, the NCW asked that the CFSAC not slam the doors on reform efforts, and instead choose to open the dialog between the NCW, the CFSAC, and government agencies.

The statement only served to deepen a growing divide between federal health agencies and the patient community. The CFIDS community has long pushed for both a new name and interpretable research standards for the illness. In the months preceding the CFSAC’s first meeting, representatives from major patient advocacy organizations were suddenly removed from the committee. Many in the patient community have blamed changes in leadership, following the new administrations appointments, for the failure of reform. Donna Dean, who formerly oversaw CFIDS efforts at the HHS, stepped down over a year ago, and has been replaced by Dr. Larry Fields. Many advocates now feel that only an pressure and a renewed interest by Congress or the executive branch can bring much-needed reforms.