Most Youth Living With Chronic Fatigue Syndrome Have Not Been Diagnosed: Study
Sat, December 3, 2022

Most Youth Living With Chronic Fatigue Syndrome Have Not Been Diagnosed: Study

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), sometimes referred to as CFS, is a complex disease characterized by extreme fatigue that can’t be explained by any underlying medical condition / Photo by: golubovy via 123RF


Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), sometimes referred to as CFS, is a complex disease characterized by extreme fatigue that can’t be explained by any underlying medical condition. There is a substantial loss of cognitive and physical function. It may also worsen with mental or physical activity but doesn’t improve with rest, according to the American academic medical center Mayo Clinic.


Worldwide, ME/CFS affects 17 to 24 million people but a new study suggests that many youths today are living with ME/CFS that have not been diagnosed. This means that they are not yet included in the count. Authors Leonard A. Jason from the Center for Community Research of DePaul University and colleagues shared in their study the prevalence of pediatric ME/CFS based on a community sample. The authors conducted the study for seven years.

The team said that most prevalence studies of ME/CFS were only based on the tertiary care center data. This process is referred to as systematic biases, like excluding youth that are less likely to access their country’s healthcare or those with lower socioeconomic status. Most epidemiologic studies on ME/CFS have also not included a thorough psychiatric and medical examination. This is why the team collected the data from 10,119 youth from 5,622 households in the Chicagoland area. These participants were aged 5 to 17, all of whom underwent evaluation.


In the first part of their study, researchers interviewed the caretakers and parents of the youth about the behavior and health of the youth. One of the common symptoms that showed a risk of ME/CFS is missing school because the child or teen experiences fatigue. Many parents also considered it a red flag.

A total of 165 participants who screened positive in the phone interview proceeded to have psychiatric and medical examinations. Then, a group of physicians provided a final diagnosis of ME/CFS. Forty-two youth were diagnosed with ME/CFS but only 4.8% of them had been previously diagnosed with the disease.

Jason, who is also a professor of psychology and who has been studying ME/CFS for over 30 years, said via medical platform Medical Xpress that ME/CFS can affect a person’s life in general, from participating in activities, attending school, and physical functioning.

Jason added that healthcare response has not been good when talking about a condition that is as debilitating as ME/CFS. Today, there are only a limited number of physicians who are skilled and trained in diagnosing and treating diseases. Even in their country, Jason said that the healthcare system has not yet done a great job in helping those with ME/CFS.

Pediatric infectious disease specialist Dr. Ben Z. Katz from the Ann & Robert H. Lurie Children’s Hospital of Chicago explained that he has worked with Jason and his colleagues since the late 1990s. Katz also teaches pediatrics at the Northwestern University Feinberg School of Medicine. Their finding shows that most youth today are living with undiagnosed ME/CFS and they would only find out about the condition in their adult years. Katz said there is a need to find better ways to determine who has ME/CFS so that effective interventions will be provided for them, most especially the Hispanic and African American youth. This is because they are the groups of youth that have a higher prevalence of the illness. Jason and the team secured more than $46 million for their research. Co-authors of the study include Shaun Bhatia, Joseph Cotler, Chelsea Torres, and Madison Sunnquist.

Misunderstanding and Stigma About ME/CFS Among Healthcare Providers

The authors emphasized that misunderstanding and stigma about ME/CFS still exists today. There are healthcare providers who may not consider ME/CFS as a condition and may just attribute the symptoms as fatigue.

Symptoms of ME/CFS

Symptoms of ME/CFS include fatigue, loss of concentration or memory, sore throat, extreme exhaustion that lasts more than 24 hours even after mental or physical exercise, unrefreshing sleep, headaches, joint pain or unexplained muscle, and enlarged lymph nodes in the armpits or neck. People with ME/CFS are also hypersensitive to normal amounts of activity or exercise. Why this happens in some people remains unknown. Some are triggered by the following:

Viral infections – Suspicious viruses include human herpesvirus 6, mouse leukemia viruses, and Epstein-Barr virus because there are some patients diagnosed with ME/CFS after being infected with the virus but no conclusive connection between ME/CFS and these viruses have been found.

Hormonal imbalances – Sometimes, people with ME/CFS experience abnormal blood levels of their hormones produced in the adrenal or pituitary glands and the hypothalamus.

Immune system problems – People with ME/CFS have a slightly impaired immune system. Yet, it remains unclear if the impairment is enough to cause the condition.

No single test has yet been developed to confirm the diagnosis of ME/CFS. Healthcare providers need various medical tests so they can rule out other conditions that have the same symptoms, details the Mayo Clinic.

Chronic Fatigue Syndrome: Statistics

The Centers for Disease Control and Prevention shares that an estimated 836,000 to 2.5 million Americans suffer from ME/CFS. However, most of these people have not yet been diagnosed. In a separate study conducted in Kansas, the prevalence of CFS was 235 per 100,000 persons. It is also four times more common in women (373 per 100,000) than among men (83 per 100,000). Not much is yet known about ME/CFS in kids because few studies have focused on the children's age group. Based on estimate though, 2 in 100 children suffer from ME/CFS. The condition is more common in adolescents compared to younger children.

The American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society have likewise shared that there are roughly 250,000 people in Great Britain with ME/CFS, 333,816 in Canada, and 180,000 in Australia. The prevalence of ME/CFS in the working population of the Netherlands is as high as 3.6%, which is higher compared to the US rate.

Factors that increase the person’s risk for CFS include genetic predisposition, stress, allergies, and environmental factors.

Diagnosis is an important tool for patients and doctors to advise the best treatment options and future health risks. The new findings by DePaul University highlight the need for better ways of diagnosing and identifying youth with ME/CFS.