An article entitled “Guidance on Home-Based Care for People with Severe ME/CFS: A Transdisciplinary Expert Statement” has been published. 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.
The paper, which highlights the lack of research into severe ME/CFS, 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 explains 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.
Palliative care is defined by the World Health Organization as “an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.” an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-limiting illness, usually progressive“.
In their paper, Hermisson and colleagues explain that “although ME/CFS is not primarily charatcterised by a terminal course, it may lead to life a life-threatening situation in severe cases“, adding that “generally a palliative care approach appears to be particularly well suited to the care of people with severe ME/CFS. This approach is characterisied by the appreciation for patients’ values and preferences, and by a strong focus on their needs and problems“.
“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.”
Severe ME Day took place on the 8th August 2026, and 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.
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.
