Research undertaken at Exeter University has set out “to understand the ME/CFS journey for unpaid carers, focusing particularly on unmet needs and directions for future research, policy and practice”.
The main conclusions are summarised below:
- Acknowledge the significant harm that has been done to carers by a health and social care system that has misunderstood and mistreated people with ME/CFS.
- Ensure carers’ voices are included in all policy making about ME/CFS.
- Recognise carers as experts by experience and vital advocates, particularly for those with severe ME/CFS who may be unable to advocate for themselves.
- Ensure health and social care professionals are equipped with the skills and resources to engage in positive working relationships with carers.
- Ensure that the wellbeing of ME/CFS carers is a priority in health and social care provision.
- Ensure that the wellbeing of carers is a priority for ME/CFS research.
Extracts
In 2021 our team, funded by GW4, conducted a series of consultations with people caring for family members with ME/CFS. We sought to understand their needs and experiences, in order to make recommendations for better supporting carers in ME/CFS research, policy, and health and social care.
Caring for a family member with ME/CFS is often a full-time role and can include (but is certainly not limited to): providing emotional support; providing physical assistance (including lifting, washing, and toileting); managing symptoms and medications; coordinating appointments and liaising with professionals across health, social care, welfare, and education; managing finances; and advocacy at all levels.
Caring for a family member with ME/CFS is characterised by uncertainty, isolation, and devastation.
Widespread stigma and misunderstanding about the condition leaves carers isolated from friends and family, abandoned by health and social care professionals, and facing a constant battle to access information and appropriate support for the person with ME/CFS