Devon ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) Long Covid Carers’ Support group meets in Exeter Central Library foyer three times a year, on the second Saturday in March, July and November; and at Pinhoe Road Baptist Church, 157-165 Pinhoe Road EX4 7EZ on the second Saturday in January, May and September.
ME/CFS is a poorly understood, debilitating illness with no known cure. In the UK the diagnosis continues to carry an undeserved stigma, although we are hopeful this is finally beginning to change. NICE reviewed its guideline for ME/CFS over three years and after an unprecedented delay a new guideline was published in 2021. During the same period SARS CoV-2 infections spread around the world, leaving a significant number with Long Covid ME. We welcome all carers of people living with Long Covid to join us.
Caring for someone with ME/CFS requires adaptability, steadfast patience and commitment over many years, if not a lifetime. In Devon, carers become managers of housing, employment or education, welfare benefits and ergonomics, as well as physical health, mental health and community (known as social) care. For many of us this makes holding on to our own wellbeing a serious challenge, leaving us sometimes feeling as isolated and as much in need of support as the person diagnosed. Devon ME/CFS Long Covid Carers group offers this support, with a warm welcome and a compassionate sense of humour, from local people who know by experience the difficulties and the best ways of surviving them. We are linked with local ME/CFS patient groups but act at our own pace.
We participate in national initiatives to improve the quality of research and NHS services available and are actively involved in developing research to produce a reliable evidence base supporting better communication between carers, health and care professionals and ME/CFS patients.
For more details call or email Trish.