Patient experiences of remote consulting with CFS/ME & FM

English researchers set out to find out how the increasing use of remote consultations in general practice affected people with CFS/ME and Fibromyalgia.

Whilst face-to-face consulting was seen as a ‘gold standard’ by many, previous negative encounters affected the experiences of remote consulations.

“The participants felt they needed to ‘prove’ symptoms within a medical system that did not bestow legitimacy on these diagnoses, highlighting a clear power imbalance and likely further contributing to negative experiences in remote spaces.

More positive experiences came from those who felt care was connected, either with a consistent clinician or by feeling that their illness experience was understood.

This was particularly relevant for those with co-morbid conditions viewed as related to their CFS/ME and Fibromyalgia; a ‘one consultation, one problem’ approach was felt to insufficiently capture this complexity.

The more informal use of remote consulting, particularly telephone, to ‘check in’ was seen positively. Feeling heard, valued, and believed was at the crux of every encounter whether conducted remotely or face-to-face.”

Patient experiences of remote consulting with chronic fatigue syndrome/myalgic encephalomyelitis and fibromyalgia: a qualitative study,by Helen Leach, Abi Eccles, Carolyn A Chew-Graham and Helen Atherton in BJGP Open 27 Aug 2024; BJGPO.2024.0079 [doi.org/10.3399/BJGPO.2024.0079]

Research abstract:

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.