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Spring 2002

CFIDS News
Keeping you up to date on recent events across the nation and around the world

Name survey: Nine of 10 say new term needed
The vast majority of people who answered a recent questionnaire on changing the name of chronic fatigue syndrome (CFS) say they favor such a switch. And almost two-thirds say the proposed term, "chronic neuroendocrineimmune dysfunction syndrome" (CNDS), is acceptable.

The questionnaire was distributed by the Name Change Working Group, which was established by the federal CFS Coordinating Committee of the Department of Health and Human Services. The working group has been meeting for nearly two years to find alternatives to "CFS," which has been widely criticized for failing to adequately represent the scope and severity of the illness.

CFS is also known as chronic fatigue and immune dysfunction syndrome, or CFIDS. CFIDS was proposed by researcher Seymour Grufferman, MD, shortly after "CFS" was coined in 1988. Many patient advocates found CFIDS more descriptive.

The name change group received 671 responses to its questionnaire, which was distributed last fall. About 73 percent of respondents were people with CFIDS; 13 percent were health care professionals and another 10 percent were family members or friends.

More than 91 percent of those who returned the questionnaire said they favored changing the name. Nearly 66 percent also said they found CNDS "acceptable." At the same time, nearly 10 percent favored dropping the word "chronic" and about five percent wanted to eliminate "syndrome."

The work group will revise its name change recommendation document taking into account the questionnaire results. The group will then present its findings to the CFS Coordinating Committee for consideration.

For more information on the name change, see The CFIDS Association of America's Web site at www.cfids.org/advocacy/name-change.asp

Disability reviews affect few people
People with CFIDS are often concerned that they will lose Social Security or Supplemental Security Income benefits during periodic review hearings. But statistics show that fewer than one in 10 of all people who undergo Continuing Disability Reviews (CDRs) have benefits revoked.

The Social Security Administration conducts CDRs to determine whether a person is still disabled and in need of benefits. Recipients are usually reviewed every few years.

Statistics from the federal Office of Disability show that 93 percent of people who underwent a CDR in 2000 (the most recent year available) retained their benefits. Of those denied further benefits, 49 percent won them back during the reconsideration process, according to the National Organization of Social Security Claimants' Representatives.

These statistics apply to all cases, not just those involving CFIDS. No figures were available specifically for CFIDS.

"I Remember Me" to air on cable TV channel
Filmmaker Kim A. Snyder's award-winning documentary "I Remember Me" will be shown on cable television's Sundance Channel, and will be officially released on home video in May to coincide with CFIDS Awareness Day. Details of the television airing were not available at press time. For more information on the film or to learn how you can contact the director, visit http://www.irememberme.com.  Snyder has expressed her gratitude to everyone who helped make the film possible.