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Most kids, teens with chronic fatigue syndrome are undiagnosed
Most children experiencing myalgic encephalomyelitis, or chronic fatigue syndrome, are not diagnosed with the disease, according to research published in Child & Youth Care Forum.
“When you’re talking about a condition that’s as debilitating as this one, the health care response has not been good,” Leonard A. Jason, PhD, director of the Center for Community Research and professor of clinical psychology and community psychology at the DePaul University College of Science and Health, said in a press release. “There aren’t that many physicians who are trained and skilled at diagnosing and treating this illness, and our health care system has not done a great job at trying to help people who are affected.”
Previous studies of the condition in children and adolescents found a prevalence ranging from 2.7 to 1,900 per 100,000 people. However, many studies relied on physician referrals and therefore excluded those without health care access or did not include a physician examination to confirm the diagnosis, according to the researchers.
Researchers called households in the greater Chicago area and interviewed parents or caretakers of children aged 5 to 17 years regarding the presence or absence of fatigue in each of their children. Interviewers used a screening questionnaire designed to identify significant fatigue in children and teens, any disruption in performance during school or other activities, and specific symptoms related to the condition.
Children and teens who screened positive were asked to participate in psychiatric interviews, psychosocial assessments and medical evaluations. Control participants who screened negative were also asked to present for testing after being demographically matched with those who screened positive.
Researchers screened 5,622 households with 10,119 children during the 7-year study. A total of 298 children screened positive for significant fatigue or memory problems and three or more symptoms of chronic fatigue syndrome, substantially reduced function, and did not have an exclusionary medical condition. Of those who screened positive for chronic fatigue syndrome, 165 were able to participate in additional examinations matched with control participants.
Among the 42 children and teens eventually identified by researchers as having chronic fatigue syndrome, 95.2% were not previously diagnosed with the condition — just two (4.8%) had been diagnosed before the study, according to Jason and colleagues.
Researchers determined that the prevalence of chronic fatigue syndrome was 0.75% (95% CI, 0.54-0.96), or 750 per 100,000 people. There was a higher prevalence of the condition among girls vs. boys, and in those aged 14 to 17 years vs. younger children.
Researchers also identified a higher prevalence of the condition among African American and Lantinx children and adolescents than among their white peers.
“Clearly people of color do get this illness, and there are some myths that you have to be white middle class to have [myalgic encephalomyelitis/chronic fatigue syndrome],” Jason explained in the press release.
The higher prevalence of the condition among minorities may be caused by less access to health care in this population, according to the researchers.
“These findings point to the need for better ways to identify youth with this illness and to develop appropriate rehabilitation interventions for them,” Jason and colleagues wrote. – by Erin Michael
Disclosures: The authors report no relevant financial disclosures.