Leonard Jason is a professor of clinical and community psychology in DePaul University’s College of Science and Health. He’s also the director of DePaul’s Center for Community Research. A DePaul faculty member since 1975, Jason’s research interests include chronic fatigue syndrome and myalgic encephalomyelitis, recovery homes, school violence and methods for prevention, smoking and methods for prevention, media interventions, children and media, and community building. He’s an editorial board member for the Journal of Community Psychology, the Journal of Prevention and Intervention in the Community, the Journal of Health Psychology, and Fatigue: Biomedicine, Health & Behavior. He’s the author of the 2013 book “Principles of Social Change.” Jason holds a Bachelor of Arts in psychology from Brandeis University and a doctorate in clinical and community psychology from the University of Rochester.
Chronic Fatigue Syndrome
Myalgic encephalomyelitis — often called chronic fatigue syndrome or ME — affects approximately 1 million Americans, and features symptoms like debilitating post-exertional malaise, impaired memory and concentration, and unrefreshing sleep. Research indicates that patients with ME are more functionally impaired than those with Type II diabetes, congestive heart failure, Multiple Sclerosis and End-stage renal disease.
The annual direct and indirect costs of ME in the United States are estimated at 19 to 24 billion dollars. Individuals with this illness have an increased risk of cardiovascular-related mortality and a lower mean age of death by suicide or cancer compared to the general U.S. population.
I believe the label “chronic fatigue syndrome” has contributed to negative attitudes among health care providers towards patients with this disease. When my research team has evaluated different names for this illness, we found that the terms did influence attributions. Our results indicate a stereotyping effect among medical practitioners when a chronic illness’s name is characterized by a single, commonly-experienced symptom — chronic fatigue — as opposed to a name that uses medical terminology — ME.
The most commonly-applied psychological treatments have contributed to the stigmatization of patients, as they reject a biological illness etiology and suggest that patients’ symptoms result from their own thoughts and behaviors. Furthermore, many patients note that such interventions do not respect their experiences.
As an alternative approach, our group developed the “Energy Envelope Theory” which is a form of pacing. Over time, patients learn to assess their perceived available daily energy levels and use that level to monitor their energy expenditures. There is some empirical support that by engaging in this type of energy maintenance, patients have been able to reduce fatigue severity and increase vitality.
With more research, understanding and empathy, the medical and scientific community can provide better treatment and care to patients who suffer from this stigmatizing illness.