Guidance on Home-Based Care for People with Severe ME/CFS: A Transdisciplinary Expert Statement

Many patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) have significant care needs. However, post-exertional malaise-the defining feature of ME/CFS-means that even minor physical, orthostatic, cognitive, or sensory stressors can trigger a disproportionate worsening of symptoms. This results in specific requirements and significant challenges in home care. Care is still provided predominantly by family caregivers, who frequently lack adequate assistance and support. At the same time, there are significant gaps in knowledge, care infrastructure, and professional guidance for nurses and other healthcare professionals, as well as physicians involved in providing care.

The objective of this guide is to structure care measures in a way that prevents overexertion and promotes stability.

The guide is based on a compilation of practice-oriented measures that have proven effective from the perspective of patients and family caregivers. These were professionally categorized and further developed by experts in nursing science, physical therapy, general medicine and public health.

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.