RETURN TO TABLE OF
Keeping you up to date on recent events across the
nation and around the world
Nine of 10 say new term needed
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
reviews affect few 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'
These statistics apply
to all cases, not just those involving CFIDS. No figures were available
specifically for CFIDS.
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
Snyder has expressed
her gratitude to everyone who helped make the film possible.