Patient experiences of remote consulting with chronic fatigue syndrome/myalgic encephalomyelitis and fibromyalgia: a qualitative study

Background Remote and digital consulting in primary care has rapidly expanded since March 2020. It is important to understand patient experiences, particularly for those living with complex long-term conditions, to identify how care can best be delivered, including within the remote space.

Aim To explore the experiences of people living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis [CFS/ME] and Fibromyalgia when consulting remotely in primary care.

Design & setting Semi-structured interviews with patients living with CFS/ME and fibromyalgia in general practice in England

Method Semi-structured interviews were carried out with 13 participants. The interviews were transcribed and analysed thematically according to a Foucauldian theoretical framework.

Results All participants highlighted needing to feel believed by clinicians. Many reported difficulties with telephone and online consulting due to the lack of physical communication. Positive outcomes were reported when there was a good relationship with a clinician. Continuity in care and recognising the complexity of these conditions were also considered important.

Conclusion This study allowed people living with CFS/ME and Fibromyalgia to describe their experiences when consulting remotely. Participants highlighted needing to feel listened to and felt they benefited from an ongoing relationship with a clinician although this was difficult to achieve when consulting remotely. Some advantages of remoted consulting were reported, particularly when symptoms were troublesome. Flexible access systems with a range of consultation modalities or preferred clinician(s) availability could improve healthcare encounters, particularly given the increased use of remote consulting, in primary care.