Eight stories comprise this paper: Stories were written in 2019 from caregivers, parents, and spouses, most of whom live with a pwME (person with ME). To protect those in our care, some authors have not used their full names. Each patient suffers from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a neuro-immune disease which affects each person differently, with a great variety of symptoms and a wide spectrum of disease burden. The National Academy of Medicine says ME/CFS is three times more common in women than men (1), and they estimate that 80% of patients have not yet received a diagnosis (2). Through their experiences caring for loved ones with ME/CFS, these caregivers have anecdotes and requests for future doctors and occupational therapists to assist with servicing their suffering pwMEs.
