For too long, the experiences of people living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been overlooked and misunderstood by the medical sector and the broader Australian community, with devastating results.
Emerge Australia’s National Health and Wellbeing Survey of people living with ME/CFS seeks to improve awareness and understanding of the experiences of living with this complex and debilitating condition. Surveys were conducted in 2015 and 2019, with participants asked a broad range of questions covering demographics, caring responsibilities, ME/CFS onset and symptom experience, access to healthcare and other services, and the effect of living with ME/CFS on their individual social and economic circumstances.