The prevalence of chronic fatigue syndrome in children and the significant impairment it causes to their physical functioning, school attendance and performance, and extracurricular activities, are at the root of a new Chicago-based study led by DePaul University psychologist Leonard A. Jason.
The five-year study aims to determine the prevalence of pediatric chronic fatigue syndrome in a community based sample of more than 20,000 Chicago area youth ages 5 to 17. The $2 million research is funded by the National Institutes of Health Eunice Kennedy Shriver National Institute of Children Health and Human Development.
Chronic fatigue syndrome is an illness that affects close to 1 million Americans, costing the U.S. economy in excess of $20 billion each year, according to Jason. The most prominent disabling symptoms are post-exertional malaise, memory and concentration problems, and unrefreshing sleep. Persons with chronic fatigue syndrome are as functionally impaired as those with Type 2 diabetes mellitus, congestive heart failure, multiple sclerosis and end-stage renal disease, he said.
The new study also will explore whether the cases of pediatric chronic fatigue syndrome from the community sample signal differences from healthy youth on a variety of measures, including predisposing and precipitating risk factors such as exposure to mononucleosis, immunizations, relatives with chronic fatigue syndrome health risk status, and other environmental factors.
"The lack of community-based samples and biased sampling methods to identify pediatric cases of chronic fatigue syndrome have impeded efforts to understand the true prevalence of this illness as well as the nature of the condition," said Jason, a professor of psychology at DePaul and director of its Center for Community Research.
Jason has studied chronic fatigue syndrome primarily in adults for the past 20 years. "We were the first group in the world to challenge the myth that this was a 'yuppie flu' disease," he said. "Our data has been used around the world to indicate that this isn't the case."
Jason's research in this field indicates that the rates of chronic fatigue syndrome are highest in adult females of lower socioeconomic status, a segment of the population that is less likely to have access to health care, and therefore, less likely to seek and receive care for this disabling illness.
"Existing published pediatric epidemiologic chronic fatigue syndrome studies are similar to the first generation of adult prevalence studies in that they either have had poor sampling plan, systematic biases that excluded certain people such as youth of lower socioeconomic status and those of color who were less likely to have access to health care, or failed to include a medical examination," said Jason.
As part of this new NIH-funded research, the children will receive medical examinations by co-researcher, physician Ben Z. Katz, an infectious disease specialist at the Ann & Robert H. Lurie Children's Hospital of Chicago. He also is a professor of pediatrics at Northwestern University Feinberg School of Medicine. Katz has collaborated with Jason and his group since the late 1990s and has identified the incidence of chronic fatigue syndrome following infectious mononucleosis in adolescents. This study will apply to a broader population.
"Clearly there is a need for a rigorous epidemiologic study of pediatric chronic fatigue syndrome," said Jason. "There is much potential in this analysis that may help understand some of the biological markers of this illness. This landmark study will take a random community sample and answer basic epidemiological questions."
Jason, who has written or edited 23 books and published more than 600 articles and 75 book chapters, is a former president of the Division of Community Psychology of the American Psychological Association and a past editor of "The Community Psychologist." He served as chair of the Research Subcommittee of the U.S. Chronic Fatigue Syndrome Advisory Committee, which makes recommendations to the Secretary of Health and Human Services.
The chronic fatigue syndrome research that Jason conducts at DePaul University provides learning opportunities for psychology students to work with patients in helping them understand their illness and track their progress through a buddy mentor system.
"We don't do just basic research," Jason said. "We have a service program that is a model for others, and our students have the chance to work in a lab and work with patients in the Chicago area. We're able to do science, service and teaching in our work at DePaul."