THIS SURVEY HAS NOW CLOSED.
THANK YOU FOR YOUR INTEREST.
RESULTS WILL BE AVAILABLE MID-2017
Federation University, in collaboration with Emerge Australia, would like to examine the health and welfare of people with ME/CFS.
This is your opportunity to have your say about your experience.
We would be enormously grateful if you could take the time and energy to complete this survey. We will use the results of this survey to inform our education and advocacy work.
This is a fairly long survey, with 102 questions. Please pace yourself and take your time. If you would like to ask a carer, friend or family member to help you complete it, please do so.
Participation is voluntary, and you are welcome to withdraw consent or discontinue participation at any time until data is processed. If you are unable to finish it, or would only like to fill in certain sections and skip others, that’s absolutely fine – any information you can share with us is valuable.
The survey HAS NOW CLOSED.
Your participation allows you to remain anonymous. You will be able to complete the survey in your own time and return the survey to finish it at a later time if you choose to do so. A summary of the findings of this research will be made available to participants on the Emerge Australia website, and may be published as scientific journal articles.
Thank you for taking part.
Some background to the survey:
Of the estimated 0.4 – 1% of the population estimated to have ME/CFS, 25% will have severe ME/CFS; rendering them bedbound and housebound. One of the many results living with of ME/CFS, is the grief and loss across all aspects of life. For people with severe ME, this can be significant.
A survey conducted by Emerge Australia in 2010 looked at the link between ME and social isolation; the results clearly indicated that there is a high level of social isolation. One reason identified was that family and friends had a limited understanding of the condition and were therefore not supportive. Many people had to cease work or studying at some stage of their illness as they were too sick or disabled to continue which caused a loss of social contacts and future goals. Finally the debilitating nature of the illness rendered sufferers unable to interact with others and society.
Lack of understanding and support from others, reduced social contact and loss of goals are common issues for the ME/CFS community. It is not surprising to understand why ME/CFS is commonly referred to as an invisible illness – reflecting the lack of recognition of this disease and how it manifests.
The Emerge Australia Health and Welfare survey is designed to quantify the level and type of need in the ME/CFS community to help inform clinical and allied health services, improve medical training, de-stigmatise ME/CFS in the community, motivate research and improve financial circumstances of people living with ME/CFS. This in turn, will ensure greater understanding and acceptance of the condition and its impact on the lives of people affected, thereby reducing social isolation.
The project has been undertaken in conjunction with researchers Dr Cara Büsst PhD, M.Sci and Ms Nanette Gerlach M.Psy, BA, BEd. Federation University are providing the ethics overview for the project. We are very grateful to the Estate of Elizabeth McLennan, the Bellarine Support Group, the Scottsglen singers and the numerous individual donors who have supported this project with their generous donations. We would also like to thank Action for ME in the UK who have provided the questions from the UK-based survey. While the questions have been adjusted for local conditions, this will allow us to look at the findings from an international perspective.
This project, the first of its kind in Australia, is designed to identify the level and type of unmet healthcare needs of the ME/CFS community in Australia with the view to effect a positive change in attitudes, knowledge and increase access to critical health and financial services.
A key aspect of this survey is distinguishing the level of need based on mild, moderate and severe degrees of ME/CFS. This is a pilot project and as such, will form the baseline for future surveys of similar nature.