Most youth living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) have not been diagnosed, according to a new prevalence study from researchers at DePaul University and Ann & Robert H. Lurie Children’s Hospital of Chicago, published by the journal Child & Youth Care Forum. Leonard A. Jason, a professor of psychology at DePaul University, led the seven-year study to screen more than 10,000 children and teenagers in the Chicago area.
The researchers found that less than 5% of youth in the study who tested positive for ME/CFS had been previously diagnosed with the illness. Of the children assessed, African American and Latinx youth were twice as likely to be living with undiagnosed ME/CFS. The study was funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, one of the National Institutes of Health. Jason has been studying ME/CFS for more than 30 years and says the illness can affect all aspects of a child’s life, from physical functioning to attending school and participating in extracurricular activities….
“Our finding that most youth with ME/CFS have not been previously diagnosed is comparable to findings in adults,” said Katz. “We definitely need better ways to identify people with this illness and to develop effective interventions for them. In particular, we need to reach African American and Hispanic youth, since in our study these groups had higher prevalence of ME/CFS. “…
A lack of access to health care, and therefore less opportunity for an earlier diagnosis, could explain this racial disparity, according to Jason. “There are barriers to researchers gaining access to underserved populations. They may not trust institutions as easily, and they may not also have time to bring their children into appointments,” said Jason….