Family Care in ME/CFS

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 community created a strong network of researchers, carers, patients and professionals committed to understanding and supporting ME/CFS family carers. The team completed in-depth consultations with these individuals to understand the ME/CFS journey, focusing particularly on the impact on carers, unmet needs, and directions for future research, policy, and practice. This work identified unique challenges for this group, and gaps in the existing ME/CFS research, policy and practice that the community will address in future research proposals. This emphasis on relationship building and consultation has helped to position the community for the best possible chance of success in subsequent funding applications and strengthened their capacity for future dissemination and implementation of research findings. In particular, the carers and patients have committed to continued involvement with the research team, and will become co-investigators and advisory group members on future funding applications.