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Media: Survey Press Release
FOR IMMEDIATE RELEASE
CONTACT: Marcia
Harmon The CFIDS Association of America 704-364-0466
media@cfids.org
NEW SURVEY REVEALS CHRONIC FATIGUE
SYNDROME
IS AS
DISABLING OR DEBILITATING AS LUPUS, MULTIPLE SCLEROSIS AND RHEUMATOID ARTHRITIS
Lack of Test
to
Detect the Illness Remains Greatest Barrier to Diagnosis
CHARLOTTE, NC, November 13,
2001 - Thirteen years
after a group of scientists coined the term
chronic fatigue syndrome (CFS) to describe a mysterious medical condition, many
medical professionals are acknowledging it as a seriously disabling condition in
need of treatment, concluded a
survey released today by The
Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America.
Three-quarters of medical professionals
responding to the survey believe that CFS, also known as CFIDS, is as or more
disabling than other chronic diseases such as lupus, multiple sclerosis or
rheumatoid arthritis. But despite the severe nature of the illness, diagnosis
remains problematic. Half of the survey respondents cited the lack of a proven
diagnostic test to be the greatest barrier to accurately identifying CFS.
Thirty-five percent feel lack of a known cause of the illness is a barrier to
diagnosis and 31% feel there is not enough basic knowledge about CFS among the
medical community.
Currently, health care practitioners are
using a number of different methods to diagnose CFS. Almost three-quarters (72%)
rely on exclusion of other common causes for symptoms; 68% use a patient
history; and 25% use laboratory tests. Practitioners also rely on documenting
the presence of symptoms other
than fatigue. When respondents were asked what one symptom other than fatigue
made them more likely to suspect CFS, or without which they would not make a
diagnosis, the most common answer was
post-exertional malaise (incapacitating fatigue lasting more than 24 hours after
physical or mental exertion).
Lack of basic knowledge among practitioners
and the absence of a diagnostic test means that more research and awareness of
CFS is needed. Seventy-seven percent of the medical professionals surveyed felt
that the amount of available professional
education about CFS is not adequate. In
addition, a large majority of respondents (87%) indicated that there should be
more funding for research on the illness.
"These survey findings confirm that CFS is
increasingly recognized as a serious, debilitating illness and medical
professionals still lack the core knowledge and tests they need to diagnosis CFS
quickly and accurately," stated Kim Kenney, President and Chief Executive
Officer of The CFIDS Association of America. "Much has been learned about CFS,
but it is now very apparent that there is still a great need for research and
education in the medical community."
The four-page survey was mailed to 8,100
medical professionals around the country, with a total of 865 completed surveys
returned. The medical professionals polled came from a variety of disciplines
including internal medicine, family/general practice, psychiatry/psychology,
neurology, nursing and medical research.
About CFS (or CFIDS)
CFS is a serious and complex illness that affects many different
body systems. There is no known cause. It is characterized by incapacitating
fatigue (experienced as profound exhaustion and extremely poor stamina),
neurological problems and numerous other symptoms. CFS can be severely
debilitating and can last for many years. CFS is often misdiagnosed because it
can resemble other disorders including mononucleosis, multiple sclerosis,
fibromyalgia, Lyme disease, post-polio syndrome, and autoimmune diseases such as
lupus. CFS is also known as myalgic encephalomyelitis (ME).
About The CFIDS Association of
America The CFIDS Association of
America is the nation's leading organization working to conquer CFS.
Since 1987, the Association has invested nearly $12 million in education, public
policy, and research programs in its
efforts to bring an end to the suffering caused by the illness. For more
information on The CFIDS Association of America or CFS, please call
1-800-442-3437 or visit
www.cfids.org.
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