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

Abstract

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:

• Myalgic Encephalomyelitis
• Chronic Fatigue Syndrome
• COVID-19
• lockdown
• coping
• social isolation

Acknowledgments

We extend sincere thanks to our participants, for giving their extremely precious time and energy to the project, and to the various bloggers and advocates within the ME/CFS community who shared their work with us.

Disclosure statement

The authors report that there are no conflicting interests to declare.

Data availability statement

The authors confirm that the data supporting the findings of this study are available within the article and its supplementary materials.

Notes

1 Terminology within this field is fiercely debated as it relates to varying aetiological perspectives (e.g. Lim & Son, 2020). ME is more frequently aligned with a biomedical model than is CFS, and is preferred by the patient community and by the present authors. Nevertheless, this paper uses ‘ME/CFS’ and ‘pwME/CFS’ to include individuals who, given the interchangeable use of these terms, could have received either diagnosis.

Additional information

Funding

This work was supported by Quality-Related funding, awarded by the Department of Psychology at Bournemouth University, UK [Grant number: 32426].