Trial Report Patient experiences of remote consulting with chronic fatigue syndrome/myalgic encephalomyelitis and fibromyalgia: a qualitative study, 2024, Leach

https://bjgpopen.org/content/early/2024/08/24/BJGPO.2024.0079

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

Helen Leach, Abi Eccles, Carolyn A Chew-Graham and Helen Atherton

BJGP Open 27 August 2024; BJGPO.2024.0079. DOI: https://doi.org/10.3399/BJGPO.2024.0079

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.

 

I wonder what they mean by "positive outcomes". Is that an actual reduction in symptoms, or just an artifact of the questionnaire? Since doctors can't actually do anything about ME at this time, I don't see how in-person meetings can be more productive than remote ones.

I'd like to see a (properly done) poll about actual improvements in quality of life resulting from in-person meetings with doctors, remote meetings, alternative health care, health care websites (and ME forums), self-treatment, and any other options. My guess is that it would look like a poll of lotteries: most people don't win, but a few individuals do, just by random luck.

 

Without severity, this study is meaningless. I can’t go to the doctor so I don’t, and she won’t come to me. During the pandemic I was able to use my GP when necessary (e.g. for migraines, bacterial infections). Now I use private online consultations.

For me the lack of online access means I can’t access my GP. Whether I “feel believed” or can build an “ongoing relationship” is completely irrelevant.