Emerge Australia conducted a second Health and Wellbeing Survey of people living with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) in 2019.

An impressive 1,055 participants from around Australia answered 60 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 social and economic circumstances. They also provided insight on the greatest barriers faced in accessing healthcare services and identified opportunities for improvement.

Lifelong Lockdown: Lessons Learned from the Health and Wellbeing Survey of Australians Living with ME/CFS 2019  was published in October 2020. Our findings paint a detailed picture of the experiences of people living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The full report can be downloaded here.

The full report includes a range of recommendations to be considered by policy makers, service providers and healthcare practitioners who aim to deliver more equitable and outcome-focused health and social care supports for people with ME/CFS and other chronic illnesses. The recommendations include that:

• employers and educators working with employees and students with ME/CFS familiarise themselves with the range of symptoms associated with living with this condition, and make appropriate and reasonable adjustments for that person/s. This may include flexible hours and options to work and learn from home
• the National Disability Insurance Agency (NDIA) boost their capacity to efficiently and accurately assess people living with ME/CFS
• the Royal Australasian College of Physicians ME/CFS clinical guidelines be replaced with up-to-date, fit-for-purpose guidance to support GPs and other practitioners in their work with ME/CFS patients
• telehealth services be made permanently available through Medicare for people with ME/CFS and other chronic illnesses

Emerge Australia are incredibly grateful to everyone who took part in this survey and made this research project possible.