For 25 years, Leonard Jason has been leading a quiet revolution.
Supported by a small army of undergraduates, graduate students and staff, Jason studies the complexities of chronic fatigue syndrome (CFS) and Myalgic Encephalomyelitis (ME).
Pinning down the causes, symptoms and treatments of the illnesses is a battle fought on many fronts. For example, while Jason believes they are two different diseases, he also acknowledges an active debate about that among researchers and patient groups. “People in general, even healthcare workers, don’t understand CFS and ME,” says the professor of psychology and director of the Center for Community Research.
One source of misunderstanding is the tendency to confuse CFS and ME with common fatigue. “Patients say that what they experience is far more severe than that. But they’re often told—by family, friends, work colleagues and even doctors—that 'it’s all in your head'. After all, energy is one of the most valued commodities of our society; if you don’t have energy, it’s worse than not having money. Our work is focused on uncovering the facts.”Breaking New Ground, Then and Now
In the early ‘90s, the number of people suffering from CFS and ME in the United States was estimated at 20,000. Jason’s rigorous, community-based epidemiological research found the prevalence to be much closer to one million adults.
“At that time, CFS and ME were thought of as ‘yuppie’ diseases affecting mostly upper- and middle-class women,” he recalls. “But, of course, they occur in every gender, economic class, ethnic population and age group. In fact, this year we’re expanding our work to look at CFS and ME among children.” This effort is supported by a $2 million grant from the Eunice Kennedy Shriver National Institute of Child Health and Human Development.
The Center is identifying symptomatic children and referring them to Lurie Children’s Hospital where they get a complete medical and psychological examination. “The data we gather over the next couple of years will contribute to a better understanding of the prevalence and expression of CFS and ME among this young, never-studied population,” Jason says. Complex, Variable Illnesses
In mapping the nature of CFS and ME, Jason and his team face quite a few challenges.
First, the causes of CFS and ME are unknown. In one study, funded by the National Institute of Allergy and Infectious Diseases, the Center is testing a hypothesis that the diseases begin with mononucleosis, which is caused by the Epstein-Barr virus. “We’re surveying thousands of Northwestern University students, collecting blood samples and watching for those who develop mono. Will a certain percentage of that group develop CFS or ME? Again, new data will give us some insights,” Jason says.
Second, the symptoms of CFS and ME are not the same from one patient to the next.
Some sufferers can’t tolerate alcohol; others are debilitated by certain foods. Many have sleep problems. The Center is working with scientists who are studying the brain waves of people with CFS or ME; initial findings suggest that patients’ brains are “sleeping” during the day. “We’re documenting real, pathological-physiological conditions,” says Jason. “That's a breakthrough in the way the medical community looks at the illnesses.”
Third, there’s no agreed-on treatment. But Jason is confident, because of prior studies, that when patients pace themselves and stay within their “energy envelope,” they do better.
“Given these complications, it’s not surprising that doctors tend to avoid a diagnosis and that patients get suboptimal clinical care,” he concludes.An Avant-Garde Perspective
“In the messy world of CFS and ME research, our work is avant-garde,” says Jason. “Unlike straight-up medical models, our approach takes a non-linear, ‘systems’ view in tracing the complex interplay of variables. We include both qualitative and quantitative data and perspectives, and—most unusual and important—we actively listen to and advocate for the patients. They’re an equal party at the table.”
Supporting Jason’s research is Jacob Furst, a professor in the College of Digital Media, who’s using artificial intelligence to illustrate the differences between patient groups and control groups; Matthew Sorenson, an associate professor in the School of Nursing, who’s exploring idosyncracies in the immune systems of people with CFS, ME and MS; psychologists at McGill University; and physicians at hospitals in Chicago, Norway and Great Britain.
“This work is a perfect reflection of DePaul’s values,” says Jason. “We’re all about expansive participation and collaboration among all kinds of stakeholders. And because the work combines teaching, research and service, the many students and staff on my team are well-positioned for good jobs and graduate school when they leave the project.”