‘The world was going through what we go through everyday’: The experiences of women with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) living with their partners during the COVID-19 lockdown in the UK.

Research output: Contribution to journalArticlepeer-review

Abstract

Objectives: Myalgic Encephalomyelitis/ Chronic fatigue syndrome (ME/CFS) is a long-term debilitating illness characterised by profound and persistent fatigue. The current study aims to explore the experiences of women with ME/CFS living with their partners during the COVID-19 lockdown in the UK.

Design: The study adopted a qualitative phenomenological design comprising semi-structed interviews with participants. Interviews were analysed using thematic analysis (TA).

Methods: Participants were women with ME/CFS (n=21) recruited through ME/CFS support groups in the UK. All participants were in romantic relationships and lived with their partners.

Results: Data were organised into three themes: (1) Lockdown disrupting routine, (2) Reducing difference and (3) Fear of getting COVID-19. People with ME/CFS found that lockdown disrupted their well-established routines. Although routines were disrupted by partners increased working from home practices, participants found having partners at home helpful. People with ME/CFS believed that the changes induced by the pandemic reduced the differences between themselves and the outside world which, prior to lockdown, had felt prominent. They were fearful of getting COVID-19 as they believed this would make their ME/CFS worse. This meant that for people with ME/CFS, the lifting of the lockdown restrictions was an anxiety provoking time, hence impacting symptoms. People with ME/CFS continued to adhere to government guidelines after national restrictions were eased.

Conclusions: This study outlines the experiences of women with ME/CFS during the COVID-19 lockdown, alongside the long-term impact this has had due to the changes the pandemic imposed. These findings may have implications for those with long COVID.
Original languageEnglish
JournalBritish Journal of Health Psychology
Publication statusAccepted/In press - 19 Feb 2024

Keywords

  • Myalgic Encephalomyelitis
  • Chronic fatigue syndrome
  • COVID-19
  • lockdown
  • pandemic
  • relationships
  • significant others

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