Narratives of recovery from persistent fatigue: a stepwise learning process

Abstract

Background: Persistent fatigue is a transdiagnostic symptom that is present in many different medical conditions and diagnoses and is a common reason for seeking health care. Despite a lack of consensus on how to understand and treat persistent fatigue, a subset of patients recover. The experiences of patients who recovered from persistent fatigue have important implications for future research and rehabilitation interventions. Purpose: This study aimed to further improve the understanding of the recovery process for people who have improved function and regained health following three health conditions characterized by persistent fatigue (CFS/ME, Post Covid-19 Condition and Exhaustion Disorder), and to develop a comprehensive model of the recovery process. Methods: Fourteen former patients shared their stories about their recovery during videotaped interviews. Narrative analysis was used to explore participants’ experiences of the recovery process, focusing on decisive events. Results: Recovering from persistent fatigue could be understood as a nonlinear stepwise learning process with a marked turning point. This turning point involved finding hope and a new understanding of their fatigue condition, which in turn provided the patient with guidance on what measures to take. Discussion: We discuss the results in relation to previous research as well as their clinical implications. A new understanding of the symptoms seems to be central to recovery from persistent fatigue, but it is not sufficient in itself. Health care needs to provide explanatory models that fuel hope and agency, as well as individualized interventions, to enable the recovery process.