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Is the old name on the way out, or staging another stand?, Jan 2003

Since its inception, the name "Chronic Fatigue Syndrome" has been a frequent source of controversy and a target for criticism.  More than a few scientists working on CFS have denounced the name as misleading and too narrow in its focus.  Patients have long felt the name has led to misunderstanding of the illness. Now, it is possible that the controversial name, Chronic Fatigue Syndrome, could finally go the way of the dinosaur.

The Name Change Workgroup, a group of leading CFS experts and patient representatives appointed by the U.S. Department of Health and Human Services, has finally released a preliminary report on changing the name. The panel recommends that the term Neuroendocrineimmune Dysfunction Syndrome, or NDS, replace CFS. In the report, they present a solid array of research to back up their final findings. They also reiterate some of the oft-repeated rationales as to why Chronic Fatigue Syndrome is not an adequate term for the illness.

Work on changing the name has been sharply divisive, emotionally charged, and subject to pitfalls. Varying patient groups and researchers have insisted that an individual symptom or pathology be headlined in any prospective new name. Other patients groups and researchers have stated that they want to stall any name change efforts until they see a name that emphasize more traditional or brain-central terminology. Some have refused to back any name that is based on an acronym, claiming that names such as AIDS and MS are stigmatizing.

But despite differences among a broad array of issues, most activists and researchers believe the time to change the name is now, rather than later. Recent advances in knowledge about CFS have led to a wider, more microbiological foundation for the illness, and many researchers are saying that reinforcing those broader findings is a modern reality. Additionally, for the first time, the research community will be presented a name that has both broad appeal and scientific backing. One thing is for certain; a new name could return credibility, respect, and patient confidence to an often-maligned public research structure for CFS.

After receiving patient input and comments, the Name Change Workgroup will be presenting their preliminary draft to the AACFS, Feb 2 ,2003 at 1:00 pm.