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Research Articles

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

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Pages 217-225
Received 15 Apr 2016
Accepted 17 Oct 2016
Published online: 08 Nov 2016
 

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.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Notes on contributors

Elizabeth A. Kendrick

Dr Elizabeth A. Kendrick received her undergraduate degree in Psychology from the University of Arkansas - Fort Smith and her Ph.D. in Counseling Psychology from the University of Oklahoma. She received specialty training in Health Psychology during her postdoctoral fellowship at the University of Oklahoma Health Sciences Center. Dr Kendrick has conducted multiple research studies, in affiliation with the University of Oklahoma, regarding the experiences of individuals with ME/CFS. Particular areas of interest pertain to illness invalidation, difficulties obtaining diagnosis, and experiences with medical providers surrounding the ME/CFS illness experience.

Denise Beesley

Dr Denise Beesley received her undergraduate degree in Education from Oklahoma Baptist University and her M.Ed. and Ph.D. in Counseling Psychology from the University of Oklahoma. She was an associate professor in the Department of Educational Psychology for 18 years; served for 14 years as the Director of the University of Oklahoma Counseling Psychology Assessment Clinic, providing specialty training and supervision for masters and doctoral students in psychological and psycho-educational assessment; and Director of Training for the Counseling Psychology program from 2013 to 2016. Currently, as a Professor Emeritus, she serves in a consultant role to the Counseling Psychology program for the upcoming APA accreditation process.

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