What ME/CFS caregivers want you to know, by Bobbie Ausubel in Work vol. 66, no. 2, pp. 361-364, 2020 July 20 [DOI: 10.3233/WOR-203171]


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.

  • J., Mother and at-home caregiver of a pwME
  • Courtney Miller, at-home caregiver and wife of Robert Miller, an ME/CFS patient of 30 years
  • Elizabeth B. Burlingame, mother and at-home caregiver of a pwME
  • Katy C., mother of a pwME
  • Bev., mother of a pwME
  • Martin W., father of a pwME
  • B., mother of a pwME
  • MLiz C., friend of two pwME

Read the stories

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