DePaul researchers unmask misunderstood chronic illness

Leonard+Jason+leads+DePaul%27s+research+into+Chronic+Fatigue+System.

DePaul University/Jamie Moncrief

Leonard Jason leads DePaul’s research into Chronic Fatigue System.

What most people don’t know about DePaul’s College of Science and Health is the hidden gem that lies on the third floor of the 990 W. Fullerton academic building in the Lincoln Park campus.

The Center for Community Research, which was founded and directed by psychology professor Leonard Jason in 2001, is dedicated to “reducing stigma, empower citizens and better understand the systemic and environmental barriers to full participation in community life,” according to the Center’s website.

Jason works quietly in a warmly-lit study with his degrees and accolades lining the walls of his office. His most recent research study, which he worked on in that very office for seven years,  screened 10,000 children and teenagers in the Chicago area for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

Jason and his team worked with the Ann & Robert H. Lurie Children’s Hospital of Chicago to conduct the study, which was funded by The National Institutes of Health (NIH).

According to the Mayo Clinic (the not-for-profit academic medical center based in Rochester, MN), ME/CFS is a “complicated disorder characterized by extreme fatigue that can’t be explained by any underlying medical condition. The fatigue may worsen with physical or mental activity, but doesn’t improve with rest.”

Signs and symptoms of ME/CFS include fatigue, loss of memory or concentration, extreme exhaustion lasting more than 24 hours after physical or mental exercise, among others according to the Mayo Clinic.

Because of the disorder’s complexity, there is no single test to diagnose it. A variety of medical tests are needed to rule out other health problems with similar symptoms, so the disorder often goes undiagnosed and untreated.

Over the course of seven years of research, Jason and his team screened each individual through high-quality medical and psychiatric examination for those at risk of having the illness.

The prevalence of pediatric ME/CFS has been disputed  within the psychology community, so Jason and his partner Dr. Ben Katz, a pediatric infectious disease specialist at the Ann & Robert H. Lurie Children’s Hospital of Chicago, included a diverse sample of ethnic, socioeconomic and demographic backgrounds in the study.

The researchers screened a random sample of 10,119 youth, ages 5-17, from 5,622 households. The first stage of the research consisted of a phone interview with parents and guardians about the overall health and behavior of their children. Missing school because of fatigue was one of the most common symptoms among youth who showed a higher risk of having ME/CFS, Jason said.

Of those who screened positive over the phone, 165 youth went on to medical and psychiatric examinations. Following the evaluations, a team of physicians made final diagnoses. The children were given a diagnosis of ME/CFS if they met the criteria for case definitions. Of the 42 youth diagnosed with ME/CFS, only 2 (4.8%) had been previously diagnosed with the illness. Of the children screened, African American and Latinx youth were twice as likely to be living with undiagnosed ME/CFS.

Jason concluded that the reason most children are going undiagnosed with ME/CFS is due to a lack of access to health care providers who can take the time to run multiple tests to discover ME/CFS as the disorder.

The disorder is debilitating, Jason said, and most youth and even adults who are suffering don’t know they have it or are not taken seriously.

Prior to this pediatric prevalence study, Jason has been researching ME/CFS for more than 30 years in adults and college students.

DePaul University has always valued its teacher-scholar model that integrates innovative research into the education of the next generation,” said Daniela Stan Raicu, associate provost for research at DePaul. “Professor Jason’s NIH awards are significant because they can be a catalyst for new opportunities for students to get engaged in research, for faculty to spearhead new interdisciplinary collaborations throughout the university, as well as for the Center for Community Research to draw further support for its important work.”

The Center for Community Research is one of the only programs of its kind in the world, and Jason takes pride in the research and work being done in his offices to serve the Chicagoland area and beyond.

 

CORRECTION: A previous version of this article misplaced the Center for Community Research and the Department of Psychology in the College of Liberal Arts and Social Science. Both programs are housed within the College for Science and Health.