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
DePaul University

Recent 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 not included.

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.

Study design
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.

Key findings
The 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.

Other 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.

Practical implications
Taken together, these findings indicate that health care practitioners from a variety of settings and specialties will inevitably encounter individuals with this syndrome in practice.

Quality 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 policy^8,9. 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.

References

1. Lewis G and Wessely S. The epidemiology of fatigue: More questions than answers. J Epidemiology and Comm Health. 1992; 46: 92-7.
2. Wessely S, Hotopf M and Sharpe M. Chronic fatigue and its syndromes. Oxford: Oxford University Press; 1998.
3. Richman JA, Flaherty, JA and Rospenda KM. Chronic fatigue syndrome: Have flawed assumptions been derived from treatment-based studies? Am J Public Health. 1994; 84: 282-84.
4. Jason LA et al. Community-based study of chronic fatigue syndrome. Arch Intern Med. 1999; 159: 2129-37.
5. Friedberg F and Jason LJ. Understanding Chronic Fatigue Syndrome. Washington, DC: American Psychological Association; 1998.
6. U.S. Census Bureau. Statistical abstract of the United States . Retrieved from the World Wide Web ; 1998.
7. Anderson JS and Ferrans CE. The quality of life of persons with chronic fatigue syndrome. J Nerv and Ment Dis. 1997; 185: 359-67.
8. Lloyd AR and Pender H. The economic impact of Chronic Fatigue Syndrome. Med J Aust. 1992; 157: 599-601.
9. 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.

CFS AS A SERIOUS WOMEN'S HEALTH CONCERN⁶

Number of American women with...

AIDS
12/100,000

breast cancer
26/100,000

lung cancer
33/100,000

chronic fatigue syndrome (CFS)
522/100,000

diabetes
900/100,000

hypertension
3,000/100,000

arthritis
3,800/100,000