Perceived stress, illness invalidation, and symptom severity in myalgic encephalomyelitis/chronic fatigue syndrome

Abstract

ABSTRACT Background: Qualitative studies indicate that individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) commonly experience illness invalidation from medical professionals that is often experienced as stressful and may contribute to strained patient–provider relationships, transfers of care, and/or decreased treatment adherence. Purpose: To examine the impact of perceived stress and illness invalidation from medical professionals on ME/CFS symptom severity. Methods: Adults with ME/CFS (N = 266) participated in an online survey, where they completed the Illness Invalidation Inventory (I*3) [Kool MB, van Middendorp H, Lumley MA, et al. Lack of understanding in fibromyalgia and rheumatoid arthritis: the Illness Invalidation Inventory (3*I). Ann Rheum Dis. 2010;69:1990–1995.], the Perceived Stress Scale (PSS) [Cohen S, Kamarck T, Mermelstein R. A global measure of perceived stress. J Health Soc Behav. 1983;24:385–396.], and the CDC Symptom Inventory for Assessment of CFS. Results were evaluated via hierarchical regression. Results: Neither perceived stress nor illness invalidation from medical professionals were significant predictors of ME/CFS symptom severity. Illness invalidation from medical professionals was positively correlated with illness invalidation from family, work colleagues, and social service workers. Conclusions: Results called into question the influence of psychological stress in ME/CFS symptom exacerbation, thus contributing additional information to the body of literature exploring the underlying mechanisms of ME/CFS. Additionally, this study suggested the particular importance of medical providers striving to create a validating relationship with patients who have ME/CFS.