If your child—or you—seems to be spending more time than usual hitting the snooze button and dozing off, there may be something more serious happening.
A new study from DePaul University and Ann & Robert H. Lurie Children’s Hospital of Chicago found that less than 5% of kids and teens who tested positive for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)—a condition characterized by knock-down, drag-out tiredness—had previously been diagnosed with the condition. The researchers screened more than 10,000 youth in the Chicago area for ME/CFS for the study, 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," said study author Leonard A. Jason, Ph.D., professor of psychology at DePaul, in a news 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.”
ME/CFS still holds a stigma—many people still may not believe it is a real condition, simply thinking these people are just “tired,” says Dr. Jason.
And according to co-author Ben Z. Katz, M.D., a pediatric infectious disease specialist at the Ann & Robert H. Lurie Hospital of Chicago, included in these large numbers of undiagnosed patients are adults, too. And there’s a racial disparity at play, also: The research found that African American and Latinx kids and teens were doubly likely to have undiagnosed ME/CFS.
"Our finding that most youth with ME/CFS have not been previously diagnosed is comparable to findings in adults," Dr. Katz said in the news release. "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.”
To screen the youth in the study, researchers first held phone interviews with parents and caretakers to collect information about the children’s behavior. One common symptom that raised red flags was kids missing school because of fatigue. Of the 10,119 children screened, 165 of them received medical and physical exams. Of those, 42 later received a diagnosis of ME/CFS. Only two of those had previously been diagnosed.
What Are the Symptoms of ME/CFS?
Yes, ME/CFS is very real—and it’s more than simply feeling tired. In fact, it can seriously disrupt your life. Here are the three main symptoms to watch out for, according to the Centers for Disease Control and Prevention:
Drop in activity level. Your ability to do activities that used to be normal for you is greatly decreased, and this comes with fatigue that has lasted at least six months. Your fatigue wasn’t a problem before you became ill, can be severe, is not the result of unusually difficult activity, and isn’t relieved by sleep or rest.
Post-exertional malaise. It’s a mouthful, but basically this is physical or mental activity that wouldn’t—and shouldn’t—have made you feel bad before, but now makes you feel like you could sleep for a week. For example, taking a shower may leave someone with this condition bed-bound for days.
Sleep problems. You may experience sleep problems, including not feeling rested even after a full night of sleep and troubles falling or staying asleep.
Beyond these three core symptoms, one of the following is required for a ME/CFS diagnosis:
Thinking and memory problems. You may struggle to think quickly and remember things. Some people describe it as a “brain fog.”
Symptoms worsen when standing or sitting upright. This is called orthostatic intolerance. You may feel dizzy, weak, lightheaded, or faint when in upright positions.
Pain is also a common symptom in ME/CFS, though not required for diagnosis. Pain can feel like muscle aches or weakness, joint pain with swelling, and headaches. Other symptoms that may appear include tender lymph nodes, a frequent sore throat, digestive problems, shortness of breath, irregular heartbeat, chills and night sweats, and sensitivities and allergies to foods, light, odors, chemicals, or noise.
If you or your child has any of these symptoms, bring them up with your doctor. They’ll likely ask you further questions, do a physical exam and order blood, urine, or other tests to determine whether you qualify for an ME/CFS diagnosis.