Around one in four people with Myalgic Encephalomyelitis (ME), are house bound or bed bound. People with severe ME need help to care for themselves and complete minimal daily tasks (e.g. cleaning teeth). They can experience significant cognitive impairment and may depend on a wheelchair for mobility.
In very rare circumstances, complications from ME for people in severe subgroups has resulted in death. In Australia, Alison Hunter died in 1996, aged 19, from complications arising from ME, which included seizures, paralysis, gastrointestinal paresis and overwhelming infection.
The stories below focus on the challenges and experiences of people with severe ME.