Research 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.
Perceived stress, illness invalidation, and symptom severity in myalgic encephalomyelitis/ chronic fatigue syndrome, by Elizabeth A. Kendrick & Denise Beesley in Fatigue: Biomedicine, Health & Behavior 08 Nov 2016 [Preprint]
I would agree that medical invalidation might not affect ME symptoms, but they do add to avoidance in my opinion, of seeing a disbelieving medical professional and to overlying depression at loss of normal life, work etc. Also, with co morbidities, avoiding the doctor affects managing the other illness/illnesses/conditions.
One always hopes on a next appointment, at least questions will be answered straightforwardly, diagnosis of non ME problems will be considered. However the disbelief seems to affect consideration of other presenting problems – this is or could be a problem.