Published: 20 May 2026
Emerge Australia community member Aran Chevalier recently shared his story in the Illawarra Mercury for ME/CFS Awareness Day.
At 45 years old, Aran Chevalier was an active man who enjoyed spending time with his family, travelling, hiking, and helping his community.
When he fell ill with a bowel infection, another set of symptoms emerged: headaches, pain around his neck and shoulders, a feeling like he was constantly hungover, and exhaustion that would not go away.
Nine years later, Mr Chevalier is mostly bedbound in his Thirroul home, sometimes spending months without leaving the confines of his bedroom and bathroom.
He has severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a chronic, debilitating condition for which there is no cure.
A poorly understood illness
ME/CFS is characterised by profound fatigue after physical or mental exertion, unrefreshing sleep and cognitive impairment.
Sufferers can experience other symptoms beyond the crushing fatigue, including pain in the joints and head, sensitivity to noise and light, dizziness, difficulty thinking or remembering, and nausea.
The cause is not known, although it can follow an infection; environmental triggers, physical trauma and genetic factors might also be involved.
There is also no single diagnostic test, which can make a definitive diagnosis difficult.
ME/CFS is commonly known as chronic fatigue syndrome, although many people living with the condition say this name minimises its impact.
Advocacy organisation Emerge Australia says 25 per cent of people with ME/CFS have a severe or very severe form of the condition.
People with the very severe form may even find it difficult to eat or have someone touch their skin. Some refer to it as a “living death”.
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