It is estimated that up to 260,000 Australians live with ME/CFS. This is based on a prevalence of 0.4% to 1%. (Source: Lorenzo et al 2009)
It is estimated that around 25% of those diagnosed with ME/CFS live with a severe form of the condition and are mostly housebound. (IOM Report 2015; Prendergast et al 2016). This means that there could potentially be 65,000 people in Australia who live a life behind closed doors.
An estimated 6% of those diagnosed with ME/CFS are mostly bedbound. This means that there could potentially be more than 15,000 people in Australia who are confined to their bed.
ME/CFS affects people of all ages and backgrounds. Research indicates that up to 85% remain undiagnosed. (Jason et al 1999)
There are a significant number of people living with severe ME/CFS. Each of those individuals face the extensive impacts of the illness due to limitations impacting mobility and social interaction.
The impact of the condition is even broader when considering how it affects the lives of carers and loved ones, who often need to become full time carers. Parents have welcomed adult children back home to become their full time carers, and children become carers for their parents. Some people are in residential aged care, as there is nowhere else for them to go.
Many people with ME/CFS have inadequate levels of financial support and assistance with daily life. Imagine if you were suddenly unable to work, leave the home, or shower, yet be denied access to the Disability Support Pension (DSP) or National Disability Insurance Scheme (NDIS). This is the reality for many people with ME/CFS, who have difficulty accessing the DSP and NDIS. Many also lack access to primary health care, as they are unable to attend medical consultations.
Although so many people are impacted, there is relatively little awareness of severe ME/CFS. For those who are impacted by this illness and for their loved ones, it can be difficult to cope due to a lack of support and assistance when they need it most. One of the leading causes of premature death in ME/CFS is suicide (Roberts et al 2016).
Severe M.E. Day Australia aims to draw attention to these issues, acknowledge the people currently living with severe ME/CFS, and provide a day of remembrance for those who have lost their lives to this condition.
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