Tag: illness experience

‘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

Abstract:

Objectives: Myalgic 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.

Design: The study adopted a qualitative design comprising semi-structured 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 United Kingdom. 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 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.

Conclusions: This 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.

Source: Sehmbi T, Wearden A, Peters S, Dienes K. ‘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. Br J Health Psychol. 2024 Mar 6. doi: 10.1111/bjhp.12717. Epub ahead of print. PMID: 38448223. https://bpspsychub.onlinelibrary.wiley.com/doi/10.1111/bjhp.12717 (Full text)

Characterizing the COVID-19 Illness Experience to Inform the Study of Post-acute Sequelae and Recovery

Abstract:

Background: There is an urgent need to fully understand the impact of variable COVID-19 experiences and the optimal management of post-acute sequelae of SARS-CoV-2 infection. We characterized the variability in the acute illness experience and ongoing recovery process from participants in a COVID-19 recovery cohort study in Northern California in 2020.

Method: We completed 24 semi-structured in-depth interviews with adults with confirmed positive SARV-CoV-2 nucleic acid amplification test result, had recovered or were recovering from acute infection, and underwent serial evaluations. We purposefully sampled English- and Spanish-speaking adults with asymptomatic, mild, and severe symptomatic infection, including those who were hospitalized and those with HIV co-infection. We used a thematic analysis to analyze interviews and identify salient themes.

Results: After integrating the thematic analysis with clinical data, we identified key themes: (1) across symptom profiles and severity, experiencing COVID-19 was associated with psychological distress; (2) symptomatic infection carried uncertainty in symptom presentation and ongoing recovery (e.g., long COVID); and (3) health information-seeking behavior was facilitated by access to medical care and uncertainty with the recovery process.

Conclusion: Our data informs the emerging field of “long COVID” research and shows a need to provide information and continuous support to persons with post-acute sequelae to ensure they feel secure along the path to recovery.

Source: Santiago-Rodriguez EI, Maiorana A, Peluso MJ, Hoh R, Tai V, Fehrman EA, Hernandez Y, Torres L, Spinelli MA, Gandhi M, Kelly JD, Martin JN, Henrich TJ, Deeks SG, Sauceda JA. Characterizing the COVID-19 Illness Experience to Inform the Study of Post-acute Sequelae and Recovery. Int J Behav Med. 2021 Dec 16:1–14. doi: 10.1007/s12529-021-10045-7. Epub ahead of print. PMID: 34918211; PMCID: PMC8675303. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8675303/ (Full text)

A qualitative exploration of adolescents’ experiences of chronic fatigue syndrome

Abstract:

The aim of this study is to provide a qualitative perspective of adolescents’ experiences of Chronic Fatigue Syndrome (CFS). Five adolescents who were considered to have recovered from CFS participated in semistructured interviews regarding their experience. The transcripts were then analysed using interpretative phenomenological analysis.

Five main themes were identified to represent common shared experiences across participants.These related to seeking understanding around the illness, experiences of loss, perceived influences on the illness, difficult emotional experiences, and adolescents’ status post recovery.

While significant efforts are being made to increase knowledge and understanding of CFS within the child and adolescent population there is still much to be learned, as is evident from this direct account of adolescents’ experiences. We identify implications for clinical practice and suggestions for future research in light of listening to the adolescents’ stories.

 

Source: Jelbert R, Stedmon J, Stephens A. A qualitative exploration of adolescents’ experiences of chronic fatigue syndrome. Clin Child Psychol Psychiatry. 2010 Apr;15(2):267-83. doi: 10.1177/1359104509340940. Epub 2010 Feb 23. https://www.ncbi.nlm.nih.gov/pubmed/20179018

 

Chronic fatigue syndrome: gender differences in the search for legitimacy

Abstract:

This study employs qualitative research methods to describe and compare the experiences of men and women with chronic fatigue syndrome (CFS), focusing on respondents’ self-perceived illness experience and relationship with medical practitioners. Data were collected from 59 respondents (18 male, 41 female) in telephone interviews using an open-ended focus interview schedule. While respondents explained the causes of the disease in ways that were largely gender appropriate, they did not experience the disease itself in gender different ways. The evidence of the study points to a clear dichotomy between ways in which men and women experience the disease and differences in the ways in which they are treated by the medical profession.

 

Source: Clarke JN. Chronic fatigue syndrome: gender differences in the search for legitimacy. Aust N Z J Ment Health Nurs. 1999 Dec;8(4):123-33. http://www.ncbi.nlm.nih.gov/pubmed/10855087