"The responsibility scares me": Exploring the experiences of caregivers to the most severly ill ME-patients

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and potentially disabling illness. The severity of the illness varies from those being mildly affected to very severely ill persons living years of their life in bed, in a dark room, avoiding somatosensory, auditory, and visual impulses. The illness is regularly subject to controversy, concerning everything from the cause to follow up and treatment. In an ongoing research project we study households affected by ME/CFS, and their experiences. There is no cure or effective symptom management for ME/CFS, and the healthcare services consequently have little to offer. This means that informal caregivers take on a major role and responsibility for the ill persons. Objective: To describe the experiences of household caregivers to severely ill ME-patients Methods: We conducted six focus group interviews with in total 26 persons, supplemented with one individual interview. All, but one focus group interview, was conducted digitally due to the Covid-19 pandemic. Interviews were conducted between February 2020 and June 2021. Results: We outline various aspects of the care burden, including emotional and mental strains, social challenges, and financial problems due to partly withdrawal from the labour market. We focus particularly on the experience of providing care for children/adolescents, since most of our study participants do so. The caregiving situation is highly demanding, where caregivers strive to balance realism and hope for the future for persons on the onset of adulthood. Caregivers furthermore have little support from healthcare services. Some even face lacking understanding and distrust. Discussions/conclusions: Our study supports the well-known fact that that caring for severely ill persons is demanding in many aspects. In addition, providing care when there is no established treatment or follow up regime, leads to caregivers feeling a burdensome responsibility, making themselves at risk for needing care