Patient experiences with treatment of chronic fatigue without a known etiology: an evidence and gap map

Key message

On commission from the Norwegian Directorate of Health, we identified and present an evidence and gap map of qualitative research on patients' experiences with treatment of long-term fatigue without a known etiology, including CFS/ME, long-covid and fibromyalgia when fatigue is a main symptom.

We conducted a literature search in seven sources in July and August 2024. We assessed titles and abstracts for 6,035 identified publications against our inclusion and exclusion criteria. 269 were considered potentially relevant and were reviewed in full text. Thirty-five studies and six protocols were included and coded according to a predefined framework. Some studies included multiple patient groups and assessed multiple treatments, those are counted multiple times. Divided into patient population we found: CFS/ME in 28 studies, long COVID in nine studies, other persistent fatigue in seven studies and fibromyalgia where fatigue is a main symptom in three studies.

Long-term fatigue without a known etiology that does not fall under CFS/ME, fibromyalgia or long-covid is described in a small proportion of the studies considering that it is the largest part of the relevant population.

The predefined treatments that patients have shared their experiences with are divided into the following four main categories: activity-based interventions (21 studies), psychological approaches (20 studies), learning and coping centers/training (ten studies) and rehabilitation (seven studies).

This research map does not present results, nor does it assess the risk of systematic bias in the included studies, their results, or their reliability.