Severe and very severe ME/CFS – when healthcare is out of reach: A qualitative study

Abstract Severe and very severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) causes profound functional impairment and substantial multisystem manifestations, leaving many home- or bed-bound, highly dependent on family/lay caregivers, and often invisible to healthcare. This qualitative study explored healthcare experiences, unmet needs, and barriers to healthcare access among people with severe and very severe ME/CFS, their family/lay caregivers, and healthcare professionals in Austria. Adapted narrative and semi-structured interviews were conducted alongside focus groups and expert interviews with healthcare professionals. Data were analysed using qualitative thematic analysis. Our findings suggest that knowledge gaps, absent or limited transportability, and insufficiently adapted healthcare services restricted access to necessary care, and could even make healthcare itself a risk for deterioration. Family/Lay caregivers frequently assumed coordinative, nursing, and medical responsibilities in the absence of accessible professional support. Improving provision for this population requires models designed around the functional capacities and individual needs of people with severe and very severe ME/CFS, including home-based and outreach care, telemedicine, multidisciplinary coordination, adapted routine and emergency care, and ME/CFS-specific professional education. Future studies should evaluate such models and strengthen research inclusion, particularly of people with very severe ME/CFS.