It has been four years since 35-year-old former builder Dan Harris has been able to get out of bed.Any variation to this is a strain on his body, incredibly fatiguing and painful.The disease affects many parts of the body — from the brain and muscles to the cardiac, nervous and digestive systems.His mother Lynne, who is his primary carer, cannot touch or hug her son to comfort him — it's too much sensory information for his brain to process.
Ms Wilson says the federal government granted $3 million for research in 2020, and since then no money has been allocated to ME/CFS. A Department of Health spokesperson says the National Health and Medical Research Council committed $6.3 million towards research relevant to ME/CFS from 2000 to 2022. "Most doctors would have difficulty recognising it, diagnosing it, and they definitely would have no idea of how to treat it.""I teach doctors, I teach for the college of GPs, I teach at GP conferences … I'm doing research at the university and begging and borrowing money to pay for all the things we do and not getting funding, even though we apply for funding all the time and we don't get it," he said.
They communicate with Dan mouthing words and pointing with one finger, and his mother speaks softly in the dark using only two to three words.