‘Welcome to my world’: a thematic analysis of the lived experiences of people with [ME] during the UK COVID-19 lockdown, 2023, Portch et al

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.

https://www.tandfonline.com/doi/abs/10.1080/08870446.2023.2220009?af=R&journalCode=gpsh20

 

I have shorter abstract, based on the you guys are getting paid? meme:

• Healthy person 1: Before the pandemic, I got out 5 times a week
• Healthy person 2: I got out 3 times
• Healthy person 3: I went out every weekend or so
• PwME: Wait, you guys are leaving the house?

 

Brilliant!

 

I took part in this study and I see one of my quotes made it into the paper! Pleased to see it finally published.

 

Lay Summary: “Welcome to My World”: A thematic analysis of the lived experiences of people with Myalgic Encephalomyelitis during the UK COVID-19 lockdown (Published in Psychology & Health, https://www.tandfonline.com/doi/full/10.1080/08870446.2023.2220009)


Acknowledgments: We extend sincere thanks to all of our participants, who sacrificed their extremely limited energy to provide their valuable insights. We also thank the bloggers and advocates within the ME/CFS community whose work helped to catalyse the project, inform our interview schedule, and contextualise our findings.



Rationale and Research Questions

Inspired by community blogs published in 2020, we sought to understand how the first UK government-imposed lockdown period was experienced by people with ME/CFS (pwME/CFS). Drawing on Whittingham’s (2020) enquiry (https://alifehidden.com/2020/04/09/lockdown/) , we specifically probed whether the ‘lockdown was easier or harder to bear for those who might have lost their freedom a long time ago?’ We further developed our interview schedule to explore (a) the potential parallels between experiences of previous health-imposed, and current government-imposed lockdowns, (b) commonalities and departures in how the ME/CFS community and general population might experience lockdown, (c) the types of coping strategies that pwME/CFS had at their disposal for handling this new form of restriction, and (d) whether or not pwME/CFS thought collective experience of restriction might engender greater public empathy and understanding for those who would continue to live a restricted existence when lockdown ended.



Method and Analysis

Between June – July 2020 we conducted audio-recorded, semi-structured interviews with 30 pwME/CFS (27 female; 1 male; 1 non-binary; 1 undisclosed; average age = 38; age range: 18 – 65). Most participants self-reported their current illness severity level (Mild = 2; Mild-to-Moderate = 2; Moderate = 3; Moderate-to-Severe = 8; Severe = 6; Very Severe = 2). While participants did not use a recognised classification system to provide this report, their answers suggest that our findings are broadly representative of a wide distribution of pwME/CFS. Illness duration in the sample ranged from 2 – 32 years, with an average of 9 years. One interviewer was a pwME/CFS and the other had a close relationship with several pwME/CFS. Interview sessions were flexibly scheduled to reduce potential for PEM/PENE/PESE. Interview responses were analysed using an experiential form of thematic analysis to derive themes and sub-themes.

Results, Discussion of findings and Implications

Theme 1: Lockdown as a collective experience?

Many participants commented that enhanced digital accessibility during lockdown allowed them to easily retain relationships with those in the chronic illness community, reconnect with friends and family members, and engage in activities and communities that they had previously struggled to join in person. The latter also meant they could forgo the stress, symptom-exacerbation, guilt, and worry associated with either attending or having to cancel in-person attendance at events.

This enhanced societal involvement was also mentioned in reports of others with energy-limiting chronic illnesses during lockdown, however, departed from accounts of other disabled populations which instead highlighted the negative impact of being unable to engage in face-to-face activities or adapt to online forms of social interaction. Elements of lockdown thus suited some pwME/CFS, however, many of our participants highlighted that they had simply been unintended beneficiaries of accessibility changes designed to cater universally.

Theme 2: Distinctive experiences of lockdown

Many participants noted that the general population’s experience of government-imposed lockdown was incomparable to the health-imposed lockdowns that they had previously endured. In particular, that health-imposed lockdowns were long-lasting with no certain end date, and that the general public, despite being confined to their homes, could still engage in a range of different activities which would be impossible to perform for those experiencing ME/CFS symptoms. As such, our participants perceived that some members of the general public might view lockdown as a novelty, a chance for self-improvement and an opportunity to identify and engage with new hobbies, where in many respects it was ‘business as usual’ for pwME/CFS.

Participants also noted that the degree of adaptation required to live within the restrictions of a government-imposed lockdown were much less extreme than those required to survive with a chronic illness. As such they felt frustrated and unseen when they encountered complaints, made by members of the general public, about having to wear masks / being unable to go out whenever they pleased / having to temporarily forego leisure activities.

Theme 3: Coping Strategies during lockdown

Participants felt able to apply many of the coping strategies they had developed during previous health-imposed lockdowns to this new source of restriction. In particular, participants highlighted the benefits of maintaining a flexible routine within the bounds of restriction, seeking and maintaining social support, and integrating small daily pleasures. These features suggest the presence of Psychological Flexibility in our sample; a hallmark of adaptability and resilience that was also linked to more positive mental and physical health outcomes in global samples of the general public during the pandemic.

They are also congruent with the synergistic elements of Acceptance and Commitment Therapy (ACT). Unlike (historically maladaptive) applications of Cognitive Behavioural Therapy, which require the pwME/CFS to question their energy-limitations and push beyond their boundaries, ACT accommodates activity pacing, asking the pwME/CFS to objectively monitor and ‘accept’ their energy envelope and ensure that identity-maintaining and value-driven activities are included within their limited schedule. Acceptance and benefit-finding have been inconsistently found in research conducted within ME/CFS populations (and other illnesses with a fluctuating course and poor prognosis), thus our findings suggest that future research could fruitfully explore how these aspects are built and maintained through personal adversity.

In addition, participants felt that there had been few opportunities to share their expert coping strategies on platforms that would reach members of the general public, who might benefit from their advice. Where participants had shared their tips (usually via their own social media platforms) they felt that the general public might not appreciate that this knowledge stemmed from their experience of similar, prior health-imposed lockdowns, nor would they recognise that sharers of this information would return to such circumstances when lockdown ended.

Theme 4: Predictions regarding a post-pandemic future

Consistent with elements contained in the themes above, participants were generally pessimistic about the potential for the shared circumstances of the government-imposed lockdown to change public perception, understanding and empathy for those continuing to endure future health-imposed lockdowns. Indeed, as our interviews were conducted at a time when restrictions were beginning to lift, participants noted that many of the more accessible features that had characterised lockdown were disappearing quickly (e.g., neighbourhood support, food and medication deliveries, live-streamed events, free platforms for digital interaction).

Overall, participants perceived that the general public would attempt to return to their version of normality as quickly as possible, with little regard for those left behind, who now faced reinstated societal alienation and isolation, both as a consequence of their symptom load and their need to protect themselves from viral transmission. Newspaper reports and community blogs, published on the journey out of lockdown, appear to suggest that these expectations were met, particularly in employment settings; circumstances that pose difficulties both for existing members of the post-viral community, as well as those newly joining as a direct consequence of COVID-19 infection.