This story is for all parents/carers who are among the millions of people around the world dealing with Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome. ME/CFS is a ‘complex and disabling disease that affects many parts of the body, including the brain and muscles, as well as the digestive, immune and cardiac systems’ (Emerge Australia).Of the 250,000 Australians living with ME/CFS, some 25% are so severely impacted they are housebound or bed bound.’ There is no cure.

For years, my 20-something daughter was in that 25%. Supporting her is still the biggest challenge of my life.