‘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 United Kingdom

Sehmbi, Tarnjit; Wearden, Alison; Peters, Sarah; Dienes, Kimberly; Dienes, Kim

doi:10.1111/bjhp.12717

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‘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 United Kingdom...

Tarnjit Sehmbi

, Alison Wearden, Sarah Peters, Kimberly Dienes, Kim Dienes

British Journal of Health Psychology

Swansea University Author: Kim Dienes

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DOI (Published version): 10.1111/bjhp.12717

Abstract

ObjectivesMyalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a long-term debilitating illness characterised by profound and persistent fatigue (JAMA: The Journal of the American Medical Association, 313, 2015, 1101). The current study aims to explore the experiences of women with ME/CFS...

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Published in:	British Journal of Health Psychology
ISSN:	1359-107X 2044-8287
Published:	Wiley 2024
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URI:	https://cronfa.swan.ac.uk/Record/cronfa66148
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The current study aims to explore the experiences of women with ME/CFS living with their partners during the COVID-19 pandemic in the United Kingdom.DesignThe study adopted a qualitative design comprising semi-structured interviews with participants. Interviews were analysed using thematic analysis (TA).MethodsParticipants were women with ME/CFS (n = 21) recruited through ME/CFS support groups in the United Kingdom. All participants were in romantic relationships and lived with their partners.ResultsData 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 and 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.ConclusionsThis study outlines the experiences of women with ME/CFS during COVID-19, alongside the long-term impact this has had due to the changes that the pandemic imposed. 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spelling	v2 66148 2024-04-24 ‘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 United Kingdom 76108f6ac5e9dccfc581a09f7e5ef333 0000-0002-6119-7025 Kim Dienes Kim Dienes true false 2024-04-24 PSYS ObjectivesMyalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a long-term debilitating illness characterised by profound and persistent fatigue (JAMA: The Journal of the American Medical Association, 313, 2015, 1101). The current study aims to explore the experiences of women with ME/CFS living with their partners during the COVID-19 pandemic in the United Kingdom.DesignThe study adopted a qualitative design comprising semi-structured interviews with participants. Interviews were analysed using thematic analysis (TA).MethodsParticipants were women with ME/CFS (n = 21) recruited through ME/CFS support groups in the United Kingdom. All participants were in romantic relationships and lived with their partners.ResultsData 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 and 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.ConclusionsThis study outlines the experiences of women with ME/CFS during COVID-19, alongside the long-term impact this has had due to the changes that the pandemic imposed. These findings may have implications for those with long COVID. Journal Article British Journal of Health Psychology 0 Wiley 1359-107X 2044-8287 chronic fatigue syndrome, COVID-19, lockdown, myalgic encephalomyelitis, pandemic, relationships, significant others 6 3 2024 2024-03-06 10.1111/bjhp.12717 COLLEGE NANME Psychology School COLLEGE CODE PSYS Swansea University Another institution paid the OA fee 2024-05-20T14:15:21.6764046 2024-04-24T13:57:54.2630590 Faculty of Medicine, Health and Life Sciences School of Psychology Tarnjit Sehmbi 0000-0002-7508-6115 1 Alison Wearden 2 Sarah Peters 3 Kimberly Dienes 4 Kim Dienes 0000-0002-6119-7025 5 66148__30206__42b446705cb64c1aa00d051ecedfd9ee.pdf 66148.pdf 2024-05-01T12:30:13.2685261 Output 290976 application/pdf Version of Record true This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited true eng https://creativecommons.org/licenses/by/4.0/
title	‘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 United Kingdom
spellingShingle	‘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 United Kingdom Kim Dienes
title_short	‘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 United Kingdom
title_full	‘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 United Kingdom
title_fullStr	‘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 United Kingdom
title_full_unstemmed	‘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 United Kingdom
title_sort	‘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 United Kingdom
author_id_str_mv	76108f6ac5e9dccfc581a09f7e5ef333
author_id_fullname_str_mv	76108f6ac5e9dccfc581a09f7e5ef333_***_Kim Dienes
author	Kim Dienes
author2	Tarnjit Sehmbi Alison Wearden Sarah Peters Kimberly Dienes Kim Dienes
format	Journal article
container_title	British Journal of Health Psychology
container_volume	0
publishDate	2024
institution	Swansea University
issn	1359-107X 2044-8287
doi_str_mv	10.1111/bjhp.12717
publisher	Wiley
college_str	Faculty of Medicine, Health and Life Sciences
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hierarchy_top_id	facultyofmedicinehealthandlifesciences
hierarchy_top_title	Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id	facultyofmedicinehealthandlifesciences
hierarchy_parent_title	Faculty of Medicine, Health and Life Sciences
department_str	School of Psychology{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}School of Psychology
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description	ObjectivesMyalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a long-term debilitating illness characterised by profound and persistent fatigue (JAMA: The Journal of the American Medical Association, 313, 2015, 1101). The current study aims to explore the experiences of women with ME/CFS living with their partners during the COVID-19 pandemic in the United Kingdom.DesignThe study adopted a qualitative design comprising semi-structured interviews with participants. Interviews were analysed using thematic analysis (TA).MethodsParticipants were women with ME/CFS (n = 21) recruited through ME/CFS support groups in the United Kingdom. All participants were in romantic relationships and lived with their partners.ResultsData 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 and 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.ConclusionsThis study outlines the experiences of women with ME/CFS during COVID-19, alongside the long-term impact this has had due to the changes that the pandemic imposed. These findings may have implications for those with long COVID.
published_date	2024-03-06T14:15:20Z
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‘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 United Kingdom...

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