The experiences of remote consulting for people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and fibromyalgia in primary care

Problem

Restrictions due to the Covid-19 pandemic resulted in a sudden shift to a predominantly remote consulting model in primary care from March 2020. Little evidence exists examining the experience of remote consulting for people living with chronic fatigue syndrome / myalgic encephalomyelitis (CFS/ME) or fibromyalgia, with the current literature focusing on the challenges faced by clinicians and people living with these conditions. Clinical guidance highlights the importance of building therapeutic relationships and personalising care, but it is unclear how this translates into a remote or virtual consulting space.This study aims to explore the experiences of people consulting with a primary care clinician for symptoms relating to their chronic fatigue/myalgic encephalomyelitis or fibromyalgia using remote methods, and develop recommendations for primary care clinicians and patients to assist them when engaging in this type of consultation. Digital and remote consulting will encompass both synchronous (telephone and video) and asynchronous methods (online forms and email).

Approach

Semi-structured interviews are being recorded and analysed thematically using a Foucauldian theoretical framework. Participants have been recruited across the West Midlands from a range of backgrounds. The Foucauldian framework has been used previously when exploring the experiences of remote consulting. It enables the analysis to consider both the concept of 'power' within the experiences of participants along with how their previous experiences, 'the history of the present', influence those discussed in the interview.

Findings

This presentation will build on the poster presentation presented at SAPC SW as a work in progress; currently recruitment is in progress and analysis of interviews will be completed by Summer 2023. Early preliminary themes have included how the choice of clinician is as important as the choice of consultation itself, particularly when interacting with clinicians who are felt to ‘believe’ or ‘not believe’ in the symptoms and experience of illness. A further theme has focused on the interaction within the consultation, the ‘transactional’ nature of a remote encounter and whether therapeutic relationships can be developed through these modalities.

Consequences

This work builds on the increasing amounts of literature exploring the impact and appropriateness of remote and digital consulting in primary care. It provides further evidence towards determining which patient groups may, or may not, be best suited for certain consultation modalities; this study evaluates this question within a novel population that is associated with some complexity. Not only is this work is in line with the RCGP policy priorities of developing relationship based care and improving the care of people living with long term conditions, it is of relevance for clinicians who encounter, and care for, people living with CFS/ME/fibromyalgia in the community. Recommendations from the findings will be created for use by patients and clinicians alike and disseminated.