The Devastating Illness Going Undiagnosed in Children

If your child was suffering from a serious illness that could rob them of their well-being, their vitality and even their childhood, you’d want to know about it, right? According to researchers at DePaul University, that might be the case for a lot of kids – maybe your kid – at this very moment.

If their results are reflective of the population of children across the country, many children living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) have not been diagnosed. Their symptoms and suffering are being ignored because of this failure in diagnostics.

The prevalence study, undertaken by a team from DePaul University and Ann & Robert H. Lurie Children’s Hospital of Chicago was published in the journal Child & Youth Care Forum. It was led by Leonard A. Jason, DePaul Professor of Psychology and involved a seven-year study which screened more than 10,000 children and teens living in the Chicago area.

According to Jason, ME/CFS can affect all aspects of a child’s life. Physical activity and daily physical function are negatively impacted, as are school attendance and performance and participation in extracurricular and social activities. Jason also noted that the study found that African-American and Latinx youth are twice as likely to be living with undiagnosed ME/CFS.

“When you’re talking about a condition that’s as debilitating as this one, the health care response has not been good,” said Jason. “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,” said Jason, director of DePaul’s Center for Community Research.

“Our finding that most youth with ME/CFS have not been previously diagnosed is comparable to findings in adults,” said Dr. Ben Z. Katz, a pediatric infectious disease specialist and Professor of Pediatrics at Northwestern University Feinberg School of Medicine. Katz has been working with Jason and his team since the late 1990’s. “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. “

There has long been a dispute regarding the prevalence of pediatric ME/CFS. Since other ME/CFS prevalence studies have drawn from tertiary care centers (hospitals providing care by specialists, after referral from primary or secondary care physicians/facilities,) Jason and Katz wanted to create a diverse ethnic, socio-economic and demographic sample which included people without access to health care. They offered access to high-quality screening for those at-risk of having the illness and included thorough medical and psychiatric examinations to all participants.

In the first stage of screening, phone interviews with parents and caretakers inquired about the health and behavior of the kids. One key red flag looked for was the incidence of missed school days due to fatigue. This is a common symptom of ME/CFS in children and teens. The initial screening included 10,119 kids aged 5 – 17 from 5,622 households in the Chicago area.

After the initial phone screening, 165 kids were sent on to have medical and psychiatric examinations, from which final diagnoses were made. A positive diagnosis of ME/CFS was made for 42 of the youth, base on case definitions. Of that number, only 2, or about 4.8 percent, had been previously diagnosed with the illness.

The prevalence of pediatric ME/CFS in this population was 0.75%. The prevalence was higher among Latinx and African-American kids in comparison to Caucasian kids in the group. “Clearly people of color do get this illness, and there are some myths that you have to be white middle class to have ME/CFS,” said Jason.

The racial disparity may be explained by a lack of access to health care, leading to less opportunity for early diagnosis, 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.

And, there is still stigma and misunderstanding about ME/CFS among health care providers. “They may not believe this is a condition, or might attribute it to fatigue,” said Jason.

Jason believes his team’s findings illustrate the need for more effective ways to identify and diagnose children and teens with ME/CFS. He continues to research the illness and explore ways to better address diagnosis and treatment for all kids.

“We’re trying to help people who have this illness have information that could be used to argue for more resources for diagnosis and treatment,” said Jason.

Better resources and a deeper reach into areas with limited or no health care access will help us understand ME/CFS in kids better and lead to better health outcomes for those kids.

Keep the faith and keep after it!

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Journal Reference – Leonard A. Jason, Ben Z. Katz, et al., The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community-Based Sample. Child & Youth Care Forum, 2020

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