'Welcome to my world': a thematic analysis of the lived experiences of people with Myalgic Encephalomyelitis during the UK COVID-19 lockdown.

Publisher: Routledge Country of Publication: England NLM ID: 8807983 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1476-8321 (Electronic) Linking ISSN: 08870446 NLM ISO Abbreviation: Psychol Health Subsets: MEDLINE

Publication: <2010-> : Abingdon, Oxon : Routledge
Original Publication: Chur ; New York : Harwood Academic Publishers ; London : distributed by STBS Ltd., c1987-

COVID-19*/psychology ; COVID-19*/epidemiology ; Fatigue Syndrome, Chronic*/psychology ; Adaptation, Psychological* ; Social Isolation*/psychology; Humans ; Female ; Male ; United Kingdom ; Adult ; Middle Aged ; Qualitative Research ; Communicable Disease Control ; Interviews as Topic ; Quarantine/psychology ; SARS-CoV-2 ; Aged

Objectives: We explore the experiences of people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (pwME/CFS) during the first UK COVID-19 lockdown period. We specifically probe perceived commonalities and departures in experience between government- and health-imposed lockdowns, application of coping strategies for social isolation, and predictions for inclusion of the chronically ill in post-pandemic society.
Methods and Measures: Thirty semi-structured interviews were conducted in pwME/CFS between June - July, 2020. Responses were qualitatively analysed using an experiential, thematic framework.
Results: While participants reported enhancements in digital accessibility during lockdown, they perceived this as an unintentional benefit from changes designed to cater universally. Similarly, their expectation was that the general population's limited experience of restriction would not engender greater understanding for those who would continue to experience health-imposed lockdowns, post-pandemic. Participants described numerous strategies for coping with restriction and isolation, developed during prior health-imposed lockdowns and applied to this novel circumstance, highlighting the presence of acceptance and resilience in the sample.
Conclusions: Our findings suggest that future work may fruitfully examine whether our participant's predictions for post-pandemic societal inclusion have been met, and how resilience and acceptance might be developed and nurtured in chronically ill populations through times of adversity.

Keywords: COVID-19; Chronic Fatigue Syndrome; Myalgic Encephalomyelitis; coping; lockdown; social isolation

Date Created: 20230601 Date Completed: 20241121 Latest Revision: 20241121

20250114

10.1080/08870446.2023.2220009

37259524