Living with ME/CFS or long COVID in Australia:
A National Burden of Disease Study
Help improve understanding, care and research for people living with ME/CFS and long COVID in Australia.
Emerge Australia and Edith Cowan University invite Australians living with ME/CFS or long COVID to take part in a confidential online survey about their experiences.
Open 9 July to 30 September 2026
Anonymous | Australian’s over 18 years | ME/CFS or long COVID | Online survey | 55 questions
For too long, people living with ME/CFS and long COVID have had their experiences overlooked, misunderstood or underestimated.
This national study aims to better understand the health, social and economic impacts of living with these complex, disabling conditions in Australia. By sharing your experience, you can help raise awareness, improve understanding, support better care, and strengthen research for everyone affected.
About the survey
Living with ME/CFS or long COVID in Australia: A National Burden of Disease Study is a confidential online survey seeking to better understand the lived experience and burden of ME/CFS and long COVID in Australia.
Before beginning the survey, you will be provided with information about the study, including how your information will be used and how your privacy will be protected.
The survey then asks about areas such as symptoms, illness severity, daily functioning, access to care and support, social and economic impacts, and the broader experience of living with ME/CFS or long COVID.
The findings will help build a stronger evidence base to inform advocacy, service planning, healthcare education, research priorities and future policy. They may also support future government-led work, such as Australian Institute of Health and Welfare (AIHW) Australian Burden of Disease Studies.
Who can take part?
You may be eligible to complete the survey if you:
- Live in Australia
- are aged 18 years or over
- Are living with ME/CFS and/or long COVID
- Can complete the survey online, either independently or with support
What does participation involve?
Participation involves completing a confidential online survey at your own pace. The survey includes 55 questions.
The survey is open from 9 July to 30 September 2026.
NEED SUPPORT?
Completing a survey about your health and lived experience can sometimes bring up difficult feelings. Please take breaks as needed and complete the survey at a pace that works for you.
If you need information or support, you can contact Emerge Australia or visit our support services.
PACING
Need to stop, rest or pace yourself while completing the survey? No problem.
You can close the survey and return to where you left off by using the same survey link, on the same device and in the same browser.
Important: please do not use private or incognito browsing, or clear your cookies before you finish the survey, otherwise you may not be able to return to where you left off.
Why your voice matters
Every response helps build a clearer picture of what it is like to live with ME/CFS or long COVID in Australia. Your experience can help:
- Raise awareness of the impact of ME/CFS and long COVID
- Improve understanding among health professionals, researchers, policy makers and the broader community
- Identify gaps in care, support and services
- Strengthen advocacy for people living with these conditions
- Inform future research, policy and service development
By taking part, you are contributing to a national effort to make the experiences of people living with ME/CFS and long COVID more visible, better understood and better supported.
What happens next?
After the survey closes, responses will be analysed by the research team.
A final report and/or publication will be made available on this page when completed.
Final report and publication
Previous Health and Wellbeing Survey reports
Emerge Australia has previously conducted national Health and Wellbeing Surveys to better understand the experiences of people living with ME/CFS in Australia.
These earlier surveys remain an important part of Emerge Australia’s work to document the lived experience of ME/CFS, highlight the need for better recognition, care and support, and advocate for the ME/CFS community. To view our previous studies, please use the links below.
In 2019, Emerge Australia surveyed over 1,000 people living with ME/CFS about their symptoms, illness onset and experiences accessing healthcare. A lack of practitioner knowledge among GPs, specialists and allied health professionals was identified as the greatest barrier to appropriate care.
Recognising that medical practitioners also face barriers accessing clear, accurate information about ME/CFS, Emerge Australia developed a summary of key findings alongside the full report, Lifelong Lockdown: Lessons Learned from the Health and Wellbeing Survey of Australians Living with ME/CFS 2019.
This summary aims to support practitioners to better understand the lived experience of ME/CFS and improve care, with a focus on symptom onset, diagnosis, primary and additional symptoms, healthcare experiences, and opportunities to strengthen services.
In 2019, Emerge Australia surveyed over 1,000 people living with ME/CFS about their symptoms, illness onset and experiences accessing healthcare. A lack of practitioner knowledge among GPs, specialists and allied health professionals was identified as the greatest barrier to appropriate care.
Recognising that medical practitioners also face barriers accessing clear, accurate information about ME/CFS, Emerge Australia developed a summary of key findings alongside the full report, Lifelong Lockdown: Lessons Learned from the Health and Wellbeing Survey of Australians Living with ME/CFS 2019.
This summary aims to support practitioners to better understand the lived experience of ME/CFS and improve care, with a focus on symptom onset, diagnosis, primary and additional symptoms, healthcare experiences, and opportunities to strengthen services.
Conducted with ASDF Research, Emerge Australia's first Health and Wellbeing Survey highlighted the need for greater understanding of ME/CFS, including how it is diagnosed and treated. A total of 610 respondents completed the survey.
A key finding was that most respondents felt worse after increasing exercise or activity, with 89% reporting symptom worsening. This reinforced the need for a precautionary approach to exercise and activity, including graded exercise therapy (GET), to minimise the risk of post-exertional malaise (PEM) and symptom exacerbation.
The survey also highlighted the need for further GP education. Many respondents reported poor understanding of ME/CFS among healthcare providers, with 44% rating their GP's understanding as poor or very poor, and 42% rating the service provided by their GP as poor or very poor. In response, Emerge Australia partnered with ThinkGP to develop an accredited GP education module on ME/CFS, released in August 2019.
The survey also demonstrated the substantial impact of ME/CFS on daily life: 46% of respondents were mostly housebound or bedbound, 74% said the condition strongly impacted or stopped their participation in paid work, and 34% reported having no income.
NEED SUPPORT?
Completing a survey about your health and lived experience can sometimes bring up difficult feelings. Please take breaks as needed and complete the survey at a pace that works for you.
If you need information or support, you can contact Emerge Australia or visit our support services.
TAKE PART
Confidential, online and at your own pace. 55 questions, open until 30 September 2026.
