Emerge Australia's ME/CFS Health and Wellbeing Survey

In order to effectively advocate on behalf of people with ME/CFS, it is necessary to have access to information about the lived experience of people with the condition. The intent of this survey is to collect information from people diagnosed with ME/CFS across Australia, to increase our advocacy efforts. The survey asks about the impact ME/CFS has had on education, employment and social interactions of people diagnosed with the condition. It also asks questions about the management of symptoms and access to support services.

2019 Health and Wellbeing Survey

The 2019 Health and Wellbeing Survey, the second of its kind, was open for responses from 25 March 2019 to 31 May 2019. We are currently undertaking analysis of the results, and aim to publish them in early 2020.

If you would like us to let you know when the results are published, please sign up to our mailing list.

2018 Health and Wellbeing Survey – key findings and report

The survey, carried out in conjunction with ASDF Research, highlighted the need for greater understanding of ME/CFS, and the way it is diagnosed and treated.

Key findings were that most ME/CFS sufferers stated they felt worse after increasing exercise and/or activity (89%). 54% reported feeling worse straightaway, while 35% reported feeling better initially, but worse later. Very few (5%), reported that increasing activity or exercise helped them feel better.

We, therefore, believe that this survey highlights the need for a very precautionary approach to all exercise and activity for ME/CFS sufferers, including graded exercise therapy (GET), in order to minimise the risk of post-exertional malaise (PEM) and symptom worsening.

Another key finding of the survey was the need for further education of GPs on the topic of ME/CFS. There is a clear disconnect between what patients say helps, and what GPs and specialists are recommending. 44% of respondents rated their GP level of being informed as poor/very poor, 29% rated their GP as unsympathetic/very unsympathetic, and 42% rated the service provided by their GP as poor/very poor. In response to these results, Emerge Australia partnered with accredited education developer ThinkGP to develop a GP education module on ME/CFS, which was released in August 2019.

You can find out more about our GP education program here.

You can access resources to promote the module here.

You can give to our appeal to raise funds for further modules here.

In terms of the impact of ME/CFS on sufferers’ lives, 46% of respondents reported that they were mostly housebound or bedbound. 74% said the condition had a strong impact on, or stopped, their participation in paid work and 34% of respondents indicated that they had no income.

You can download a full copy of the first Health and Wellbeing Survey 77-page report here.