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Shattering the Myths: Recommendations
From a Community-Based
Study of CFS
By Leonard A. Jason, PhD., Renee
R. Taylor, PhD.,
Cara L. Kennedy, Sharon Song, MA, Danielle Johnson
and Carrie J. Curie
research has shown that chronic fatigue syndrome (CFS) is much more prevalent than originally thought.
Part of the reason why this condition has been marginalized may lie in the fact that few studies of CFS
within the general population have sampled diverse inner-city communities to accurately estimate the prevalence
and summarize the common characteristics of those diagnosed1.
Prior estimates of prevalence
have been based primarily on physician referrals from hospitals and community-based clinics2,
which do not sufficiently represent the total population of persons with CFS3. Many of those
studies have underestimated the prevalence of this condition because those not receiving health care were
Recently our research team conducted a large-scale, multi-stage investigation of
CFS prevalence using a random sample of Chicago residents stratified specifically to represent a wide
range of individuals of varying ethnic groups and socioeconomic levels4.
Our study was carried
out in two phases.
In phase one, 18,675 adults completed a telephone screening survey to assess for CFS-like symptoms. In
phase two, a structured psychiatric interview was administered to those respondents from phase one who
tested positive for CFS-like symptoms based on the initial screen (six or more months of fatigue and at
least four other symptoms based on the CDC's criteria for CFS, a summary of which is in this issue),
and to a random sample of individuals who did not meet criteria.
The psychiatric interview was
used to rule out exclusionary disorders. In phase two, participants also received a complete physical
examination, laboratory tests, and a structured medical history interview.
prevalence rate for CFS was estimated
at 0.42%, indicating that it occurs in more than 800,000 Americans, which is significantly higher
than previously estimates by the Centers for Disease Control and Prevention. Consistent
with estimates reported in a majority of prior investigations5, CFS prevalence rates for women
in the present study were markedly higher than for men. When comparing the prevalence of CFS in women
to the prevalence of other diseases, CFS emerges as a serious women's health concern.
important findings from our study involved the relationship between ethnic identification, socioeconomic/work
status and CFS. Contrary to previous findings indicating a predominance of CFS among Caucasians5,
individuals in Latino and African American groups exhibited higher rates of CFS than Caucasians,
with Latino participants demonstrating the highest CFS prevalence.
With respect to socioeconomic
status, a majority of prior reports have described individuals with CFS as well educated, with middle
or upper incomes and professional occupations5. However, these descriptions are based on non-random
sampling of medical facility populations who presumably access care as a result of their social and economic
resources. In the present study, the prevalence of CFS was highest among skilled workers and lowest
among professionals. Additionally, individuals with CFS were more likely to be unemployed, receiving
disability income, or working part-time and healthy controls were more likely to be working full-time.
together, these findings
indicate that health care practitioners from a variety of settings and specialties will inevitably encounter
individuals with this syndrome in practice.
of life for CFS patients has been found
to be significantly lower than for other chronic illness groups, including patients with HIV+Stage 1,
liver transplant, coronary artery disease and narcolepsy, as well as those undergoing hemodialysis or
post-angioplasty or cancer chemotherapy.7 Therefore, prompt diagnosis and creation of a comprehensive
treatment plan that meets the individual's needs is highly important.
Lessons from the study that
you can implement in your practice include:
- Don't discount CFS as a diagnosis. Less
than 10% of individuals with CFS in our study had been diagnosed prior to the study. This suggests
that many with CFS are not receiving treatment (either by choice or because they lack economic resources)
and that a substantial number of health care professionals are neither recognizing, diagnosing nor treating
this condition in practice.
- CFS is more than just fatigue. The name
of the illness, chronic fatigue syndrome, can be misleading because it places emphasis on just one symptom.
More than 80% of study participants also reported muscle aches or pain, impaired memory or concentration,
and joint pain.
- There is substantial diversity among CFS patients.
Many individuals with CFS belong to ethnic minorities and/or are of middle to low socioeconomic status.
The old stereotype that CFS affects mainly white, upper class women is not true.
Since the functional disability associated
with CFS results in marked
interruption of work and family life, the syndrome also has important implications for public health and
policy8,9. It is essential that medical professionals serving as gatekeepers to care, as well
as the general public, become educated about the nature, diagnosis and treatment of this syndrome.
- Lewis G and Wessely S. The epidemiology of fatigue: More questions
than answers. J Epidemiology and Comm Health. 1992; 46: 92-7.
- Wessely S, Hotopf M and Sharpe M. Chronic fatigue and its syndromes.
Oxford: Oxford University Press; 1998.
- Richman JA, Flaherty, JA and Rospenda KM. Chronic fatigue syndrome:
Have flawed assumptions been derived from treatment-based studies? Am J Public Health. 1994;
- Jason LA et al. Community-based study of chronic fatigue syndrome.
Arch Intern Med. 1999; 159: 2129-37.
- Friedberg F and Jason LJ. Understanding Chronic Fatigue Syndrome.
Washington, DC: American Psychological Association; 1998.
- U.S. Census Bureau. Statistical abstract of the United States
. Retrieved from the World Wide Web ; 1998.
- Anderson JS and Ferrans CE. The quality of life of persons with
chronic fatigue syndrome. J Nerv and Ment Dis. 1997; 185: 359-67.
- Lloyd AR and Pender H. The economic impact of Chronic Fatigue Syndrome.
Med J Aust. 1992; 157: 599-601.
- Jason LA et al. Politics, science, and the emergence of a new disease:
The case of chronic fatigue syndrome. Am Psy-chologist. 1997; 52: 973-83.
The authors are researchers in the
psychology department of DePaul
University in Chicago, Ill.
AS A SERIOUS WOMEN'S HEALTH CONCERN6
Number of American women with...
fatigue syndrome (CFS)