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Media: CPR
Team Alert
MEDIA
UPDATE
Media Alert:
11/19/2001
Below is the text
of a news release about The CFIDS Association of America's recent survey of
medical professionals in its database. The survey was designed to determine
attitudes to and knowledge of CFIDS as well as potential barriers to diagnosis
and treatment.
Data from the survey has provided the Association with
much-needed new "hooks" to interest the media in CFS. PWCs can also use the
survey to raise awareness among their local media. Copies of the press kit for
the survey are available on the Association's web site at
http://www.cfids.org/resources/cpr-introduction.asp.
Renee
Brehio
Director of Communications
The CFIDS Association of
America
**************
FOR IMMEDIATE RELEASE
November 15,
2001
CONTACT:
Renée M. Brehio
The CFIDS Association of
America
704-364-0466
NEW
SURVEY REVEALS CHRONIC FATIGUE SYNDROME IS AS DISABLING OR DEBILITATING AS
LUPUS, MULTIPLE SCLEROSIS AND RHEUMATOID ARTHRITIS
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Lack of
Test to Detect the Illness Remains Greatest Barrier to Diagnosis
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CHARLOTTE,
NC, November 15, 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. A copy of the survey and
press materials is also available on the Web site.
The CFIDS
Association of America
Advocacy, Information, Research and
Encouragement
for the CFIDS Community
PO Box 220398, Charlotte NC
28222-0398
Voice Mail: 800/442-3437
Resource Line: 704/365-2343
Fax:
704/365-9755
www.cfids.org
General E-mail:
info@cfids.org
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