"I literally dropped out of life," Anna said. "I couldn't stand up. I couldn't cook. I couldn't put washing on. I couldn't even be with my kids very much because I was just so ill. It was devastating." The complex condition affects up to 250,000 people in Australia, about a quarter of whom are so unwell they are confined to their beds and homes. But there is new hope for sufferers with the creation of Australia’s first biobank and registry. The $1 million biomedical research initiative - the result of a philanthropic trust grant from the Mason Foundation – will allow researchers to work with ME/CFS advocacy group Emerge Australia and scientists all over the world to study the cause and cure of the debilitating illness. Researchers will use the DNA samples, tissue and blood cells stored at the Australian Red Cross Blood Service to examine whether patients struck down with the disorder have similar molecular and cellular abnormalities. Head of Microbiology at La Trobe University Professor, Paul Fisher, believes it is a game changer.

He has conducted world-leading biomedical research into ME/CFS and discovered a specific defect in the mitochondria - the cellular organelle that produces energy for our cells and bodies. "There has just been so little research into this condition in the past and almost no money put into biomedical research," Professor Fisher said. "For first time in the world we have the opportunity to start to examine the cause and effect to try to understand the biomedical basis." The disease has long been shrouded by stigma. But there is a growing understanding of the often invisible condition, helped by the Netflix documentary Unrest. "In the old days it was was called hysteria and it was believed to have pyschological basis," Professor Fisher said. "That sort of prejudice has carried across, but what's becoming really clear from our work and the work of others is that this condition has a biomedical basis and not a pyschological basis." The disorder sees people experience exhaustion that is not relieved by rest, as well as pain, mental fogginess and trouble with sleep often following relatively-minor, everyday activities.

Loading Anna prefers to call the condition myalgic encephalomyelitis, because fatigue, she said, is one element of an array of other debilitating symptoms, including excruciating pain, gastrointestinal disorders, neurological and heart issues and an impaired immune system. Before the 48-year-old was struck down by the disease she was a busy, active mother of two young boys. "The hardest part for me is that my boys don't remember me healthy," Anna said. "It almost feels like a temporary dementia in that your brain is so foggy it sort of feels inflamed. One day I can be speaking fine and the next I don't remember words and I can't think or even add up two numbers." Loading

Controversy surrounds what treatment should involve, with many people prescribed exercise therapy. But such treatments have been disputed, with some sufferers claiming it makes their illness worse. For Anna, life remains a balancing act. "Physical exertion is my kryptonite," she said. "I know now that the more I exert, the sicker and sicker I get." It took Anna almost six years to get a diagnosis. But the hope is that researchers will soon develop a diagnostic blood test for ME/CFS. Once they work out the cause, Professor Fisher said, prospects for effective treatment and a potential cure will be in sight.