WAYNE Andrews says he is alive, but not living, and the harder he pushes himself, the worse the payback.
The 52-year-old Hunter man has battled chronic fatigue syndrome since he was 29.
It had “disintegrated” his first marriage, and left him unable to be the parent he wanted to be.
“It is a very isolating illness,” he said.
“I used to be an extremely fit man, I used to surf every week, bush walk, play tennis, and I can’t do anything now that I used to enjoy. It really is as though I’m stuck in solitary confinement now.”
About 104,000 people in Australia suffer from chronic fatigue syndrome, a neuroimmune condition marked by symptoms such as “unrelenting exhaustion,” muscle pain, brain function and digestive problems.
Mr Andrews hoped a screening of the Sundance award-winning documentary, UNREST, at Newcastle University on Saturday would raise awareness of the debilitating and misunderstood condition.
Local chronic fatigue syndrome researcher, Professor Tim Roberts, will speak about the condition and host a Q&A session at the screening at 5pm on November 11.
The film follows the story of Jennifer Brea, a 28-year-old PhD student at Harvard who is months away from getting married when she gets a mysterious fever that leaves her bedridden, and looking for answers.
Disbelieved by doctors, she turns the camera on herself to find there are millions of people worldwide who are confined to their homes and bedrooms by myalgic encephalomyelitis – commonly known as chronic fatigue syndrome.
“It effects every cell in your entire body,” Mr Andrews said.
“GPs aren’t taught much about this illness, and the really arrogant ones will say this disease doesn’t exist, but that’s because they have no answers.
“When you run out of energy, it’s like your battery has just gone completely flat and you just can’t function.
“There is nothing that I used to enjoy in my former life that I can do now.”
He would like to see the federal government sink some money into the under-researched illness.
“It’s hard to enjoy yourself when you are always having to hold back,” he said.