Following Severe ME Day 2026 on the 8th August, the publication of an article entitled “Guidance on Home-Based Care for People with Severe ME/CFS: A Transdisciplinary Expert Statement” is especially timely.
The paper addresses the complex needs of people with ‘severe ME/CFS’, particularly the risk that even minor physical, cognitive, sensory, or orthostatic stressors can trigger post-exertional malaise and worsen symptoms. It highlights that home care is often delivered by family caregivers with limited professional support, while health and care professionals may lack disease-specific guidance and knowledge.
The expert statement, which was developed in collaboration between ‘patients, family caregivers, and healthcare professionals’ proposes practical, transdisciplinary guidance for structuring home-based care around each person’s exertion threshold. It describes adaptations across core areas such as nutrition, personal hygiene, communication, emotional stress management, caregiving relationships, and planning home visits. Overall, the paper argues that care should aim to prevent overexertion, reduce symptom deterioration, and promote stability, while also considering the relevance of palliative care principles for people who are severely affected.
“The guide describes how to adapt key dimensions of care—from nutrition and personal hygiene to communication and managing emotional stress—to disease-specific exertion thresholds. Additionally, it outlines requirements for the caregiving relationship and the planning of home visits and discusses the application of palliative care principles.”
Notably, Severe ME Day is a day dedicated to raising awareness about severe ME. The day also serves as a remembrance of those who have lost their lives to this debilitating condition – one such individual being Sophia Mirza, a British artist, who passed away aged 32. Her death brought significant attention to the disease, hence her birthday – 8th August – was chosen to mark Severe ME Day.
Estimates suggest that around 25% of individuals with ME have the severe form of the disease, and the impact of severe ME on an individual’s life is profound, leaving many confined to their homes, bedbound, or even immobile.
ME Research UK has previously written about the experiences of those with severe ME/CFS, and about the specialised care provided for people with severe or very severe ME/CFS in a clinic in Norway.
