Portch, Emma, Moseley, Rachel L, Wignall, Liam et al. · Psychology & health · 2024 · DOI
This study asked 30 people with ME/CFS about their experiences during the UK's first COVID-19 lockdown in 2020. The researchers found that while digital tools became more accessible during lockdown (which helped some participants), people with ME/CFS had already developed their own coping strategies from being isolated by their illness for years. Participants were concerned that once lockdown ended, society wouldn't better understand what it's like to live with severe restrictions due to illness.
This study highlights the unique perspective of ME/CFS patients who have long experience with isolation and restriction due to illness, offering insights into resilience and adaptation that could inform support strategies during future public health crises. It also raises important concerns about whether society will recognize and accommodate the ongoing needs of chronically ill people after temporary lockdowns end.
This qualitative study does not establish causation or generalize findings to all ME/CFS patients, as it involved a small, self-selected sample from one country at a specific time point. It cannot predict whether participants' concerns about post-pandemic inclusion actually materialized, nor can it quantify the prevalence of reported experiences across the broader ME/CFS population.
About the PEM badge: “PEM required” means post-exertional malaise was an explicit required diagnostic criterion for participant inclusion in this study — not that PEM was studied, observed, or discussed. Studies using criteria that do not require PEM (e.g. Fukuda, Oxford) are tagged “PEM not required”. How the atlas works →
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