Family Care in ME/CFS

GENERATOR FUND

Awarded: 2021

GW4 community leads
University of Bristol: Lucy Biddle
Cardiff University: Sharmila Khot
University of Exeter: Siobhan O’Dwyer (PI)

Project overview

This project will develop research on family care in ME/CFS.

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Background

Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome; ME/CFS) is an illness characterised by profound fatigue, pain, and cognitive impairment. In the UK, 250,000 people have ME/CFS, at a cost to the economy of £3.3 billion per year. Despite this, the cause of ME/CFS is unknown, evidence for treatment is limited, and stigma and misunderstanding are widespread.

Most people with ME/CFS depend on their families for care, but there is little research on family care in the context of ME/CFS. The existing research suggests the usual toll of caring for a disabled or chronically-ill family member is compounded by the controversy surrounding ME/CFS, but much remains to be understood, including: the experience of ME/CFS carers from minority groups; carers’ perspectives on current treatments and policy; carers’ support needs; and how best to create partnerships between carers and health and social care professionals. This information is essential for developing targeted interventions for ME/CFS carers and facilitating carer-focused changes in policy and practice.

The existing research was also conducted prior to COVID-19 and forthcoming revisions to the NICE Guidelines for ME/CFS. There are some marked similarities between Long COVID and ME/CFS, and the experiences of ME/CFS carers may be valuable in anticipating the needs of Long COVID carers. Similarly, the new NICE Guidelines are expected to reduce treatment options and access to support for ME/CFS in the UK, but the impact on carers remains to be seen.

Project summary

The aims of this project are to:

(1) Create a strong network of researchers, carers, patients, and professionals committed to understanding and supporting ME/CFS family carers.

(2) Develop plans for comprehensive research on family care in ME/CFS.

The research developed by this network will inform targeted support for ME/CFS carers and facilitate meaningful engagement between carers and health and social care professionals.

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