This project, the first of its kind in Australia, is designed to identify the level and type of unmet healthcare needs of the Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) community in Australia with the view to effect a positive change in attitudes, knowledge and increase access to critical health and financial services.
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.
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.