Do diagnostic criteria for ME matter to patient experience with services and interventions? Key results from an online RDS survey targeting fatigue patients  in Norway.

Abstract

Public health and welfare systems request documentation on approaches to diagnose, treat, and manage myalgic encephalomyelitis and assess  disability-benefit conditions. Our objective is to document ME patients'  experiences with services/interventions and assess differences between those  meeting different diagnostic criteria, importantly the impact of post-exertional  malaise. We surveyed 660 fatigue patients in Norway using respondent-driven  sampling and applied validated DePaul University algorithms to estimate Canadian  and Fukuda criteria proxies. Patients on average perceived most interventions as  having low-to-negative health effects. Responses differed significantly between  sub-groups for some key interventions. The PEM score was strongly associated with  the experience of most interventions. Better designed and targeted interventions  are needed to prevent harm to the patient group. The PEM score appears to be a  strong determinant and adequate tool for assessing patient tolerance for certain  interventions. There is no known treatment for ME, and "do-no-harm" should be a  guiding principle in all practice.