We are delighted that links to our videos about Post Exertional Malaise and Severe ME/CFS, in the ‘Dialogues from a neglected illness’ project, have been included in the new resource
Dialogues for a neglected illness – or ‘Dialogues for ME/CFS’ – is a new project being made with an award from the Wellcome Public Engagement Fund 2018-21.
ME/CFS was originally called benign myalgic encephalomyelitis. Recognised as a physical disease by the World Health Organisation in 1969, it later became confused with psychiatric and behavioural fatigue conditions. There has been pitifully little high quality biomedical research in comparison with comparable diseases. To compound the problem, medical education about ME/CFS has generally been non-existent, or worse, inaccurate. With no recognised biomarkers, many doctors do not feel confident in diagnosing the disease and do not know how best to help their patients. The tragic consequence is that many patients have deteriorated or developed lasting disability, after following misguided advice and treatments or suffering medical neglect.
This situation is changing. ME/CFS is now an exciting new area of research, attracting researchers from a range of disciplines, often using cutting edge technologies to investigate this complex multi-system disease. The new MRC funded Decode ME/CFS DNA Study is the largest ever biomedical study of ME/CFS and is an exciting step forward for the UK.