Chapter One, Course WB1032
Myths Surrounding CFS
Because of the controversial nature of CFS, a number of myths surround it. Three of the most common myths include the following:
Myth 1: CFS is a relatively rare disorder.
Population-based studies conducted in Chicago by DePaul University (Jason et al., 1999) and in Wichita, Kansas by the CDC (Reyes et al., 2003) estimate that CFS affects between 0.24% and 0.42% of adults and that 1% of the U.S. adult population reports symptoms of CFS. If these rates are applied to the U.S. population 18 to 64 years of age, more than one million American adults have CFS as defined by stringent international criteria.
Community studies in Wichita, Chicago, San Francisco, Sacramento and Michigan have found that only half the people who suffer from CFS have consulted a physician for their illness. In addition, the Chicago and Wichita studies found that only 10–16% of individuals with CFS have ever been diagnosed by, or treated for the illness by a physician (Kennedy et al., 2000; Reyes et al., 2003). The low rate of diagnosis supports a need for increased awareness of the syndrome among those experiencing the symptoms of the illness and by professionals throughout the health care system.
Myth 2: The highest prevalence of CFS is among middle-aged, affluent, white, professional women.
Recent studies have shown that much of the CFS patient stereotype of the last two decades is incorrect. White, middle-aged, middle-class women are not the only demographic group who have CFS; however, this group is the one that health care professionals will typically see in the clinical setting, as they are the population most likely to seek health care and generally have better access to health care. Population-based studies in Chicago and Wichita found CFS to be 3 to 4 times more common in women than in men and more common in the 40-60 year age range (although people of all ages may develop the disorder). CFS epidemiological studies related to age, sex, race and socioeconomic status are currently under evaluation and will provide updated demographic data for this patient population.
Prevalence of CFS Among Children and Adolescents
Adolescents may also develop CFS, although the occurrence in adolescents is rare (Jones et al., 2004; Dobbins et al., 1997). In general, a diagnosis of CFS may not be appropriate for children under age 12. The 1994 definition was designed to identify adults with the syndrome, and while these criteria are applied to adolescents, they may not be entirely adequate in assessing CFS in younger people. The unique aspects and challenges of chronic illness (including CFS) in adolescents warrant special mention and should be considered by health care professionals who care for this age group.
- Young people may not report medical information the same way adults do. They may use different words to describe their symptoms or may not have a complete understanding of their symptoms or emotions. Some ill youth may lack a sense of “normal” and may not perceive their symptoms as indicative of an illness process.
- Parents or guardians may be the main source for reporting health information. Adults’ observations may differ from the feelings and experiences of the child or adolescent (Jones et al., 2004).
- Damaged social relationships and isolation are common consequences of chronic illness in youth and this is particularly problematic in adolescence. Efforts should be made to help the adolescent build and maintain relationships with peers and participate in enjoyable, age-appropriate activities.
- School absenteeism — particularly in the early stages of illness — is common among children and adolescents with CFS. Absenteeism combined with problems in memory and concentration that accompany CFS can result in delayed educational progress.
- Students with CFS may qualify for educational accommodations under the Individuals with Disabilities Education Act or the Rehabilitation Act (U.S. Department of Education, 2004, section 2). Health care professionals can help schools and families work together to develop appropriate educational plans for students with CFS. These may include reduced schedules, home tutoring, alternative test-taking conditions and counseling. The need for and effectiveness of alternate educational strategies should be reviewed regularly because the goal of therapy is return to full participation (academically, developmentally, socially, intellectually); as this is achieved, alternative education is not only no longer necessary, but may complicate full development.
Myth 3: CFS is a form of depression
Clearly CFS is not a form of depression. However, 25% of patients with CFS also suffer a major depressive disorder, and 50% to 75% have experienced a depressive episode during their lifetime (Afari and Buchwald, 2003). In comparison, 10% of American adults have a major depressive episode each year, and 17% have had at least one lifetime episode (Kessler et al., 1994).
Because depression is common in people with CFS (and other chronic illnesses), it is important to consider its presence and seek an appropriate psychiatric consult if warranted. The behavioral clinician should be aware of overlapping features between certain forms of depressive disorders and CFS, and select treatment options based on the types of symptoms present.
Effective treatments for depression are available and may reduce overall morbidity in those with CFS. However, such treatment should be initiated only when warranted and carefully supervised by health care professionals experienced in evaluating therapeutic efficacy and side effects.
Content Source: National Center for Zoonotic, Vector-Borne, and Enteric Diseases (ZVED)