Stigmatisation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A scoping review

Objective: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a severe chronic, multi- systemic disease characterised by post-exertional malaise (PEM), cognitive impairments and pain. There is no curative treatment yet. Stigmatisation is prevalent in several chronic illnesses, impacting patients' quality of life and health outcomes. This review aims to examine the types and effects of stigmatisation experienced by individuals with ME/CFS. Methods: This scoping review followed the PRISMA-ScR guidelines. A systematic literature search was executed across six electronic databases, complemented by citation searching. The screening was performed independently by two researchers. Results: We included 44 studies in this review. The most commonly assessed type of stigma was perceived stigma (n = 7); however, the majority of studies (n = 33) did not specify the type of stigma assessed. Our findings showed that not only individuals with ME/CFS can be affected by stigmatisation, but also people in their social circles such as friends and family members. Stigmatisation was reported in various areas of life, but the most frequently identified issue were stigmatising experiences by healthcare professionals such as physicians. Stigmatisation was found to contribute to poorer health outcomes, delays in diagnosis, and broader personal and societal consequences. Conclusion: Individuals with ME/CFS can be profoundly affected by stigmatisation. Further research should investigate experiences of children and (very) severely ill patients. Research is also needed to develop strategies to reduce stigmatisation in healthcare and other settings and to improve the quality of care for individuals with ME/CFS.