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Chronic fatigue syndrome can go undiagnosed in many young people

Researchers say more needs to be done in the health care system to ensure proper diagnoses

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Photo (c) fizkes - Getty Images
A new study conducted by researchers from DePaul University found that Chronic Fatigue Syndrome (CFS), otherwise known as Myalgic Encephalitis/Chronic Fatigue Syndrome (ME/CFS), is often undiagnosed among the younger population. 

This finding is a cause for concern, as ME/CFS can interfere with virtually every area of a young person’s life, making it difficult to do things like go to school or play sports. 

“When you’re talking about a condition that’s as debilitating as this one, the health care response has not been good,” said researcher Leonard A. 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.” 

Knowing the signs

The researchers had over 10,000 kids between the ages of five and 17 participate in the study, with the first step being a phone consultation with their parents and caretakers. 

Because ME/CFS often prevents sufferers from completing typical day-to-day tasks, the researchers first wanted to get a baseline understanding of how fatigue affected the children in their regular routines. 

If the researchers noted a certain number of symptoms or behaviors consistent with ME/CFS, they selected the children for the next round of the study, which was a physical examination. From that point, physicians made the final determination. 

Of the 165 kids who received a physical exam, 42 were given a ME/CFS diagnosis. Ultimately, less than five percent of the kids who received a positive diagnosis had been diagnosed in the past. 

While this study proves that receiving a diagnosis for ME/CFS is difficult for any child, the researchers found that the prevalence for the condition was higher for children of color. This emphasizes the need for higher quality health care options, especially in underserved populations. 

Jason explains that many healthcare providers “may not believe this is a condition, or might attribute it to fatigue,” which only highlights the need for medical professionals to be better equipped to detect these cases when young people present with them. 

Moving forward, the researchers hope both consumers and the greater medical community can use these findings to their advantage so that patients receive the proper diagnoses and treatment that they need. 

“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. 

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