Tucked up in her bed on a bright summer's day in Perth, Theda Myint can barely be seen in the inky darkness of her bedroom. An icepack on her forehead quells a constant, throbbing headache, and she strains to talk above a slow and sluggish whisper. "I desperately, desperately want to live," she says, pulling her blankets up tightly to her chin, "and to be able to be in the world again."

She would need to get out of bed first. Myint, 34, has for more than a decade suffered from severe myalgic encephalomyelitis, or chronic fatigue syndrome (CFS), a neurological immune disorder that brings about extreme tiredness unrelated to exertion. Her condition has deteriorated to a point where the one-time model and aspiring journalist now spends most of her life in bed. "Sometimes she's too tired to even eat," says her mother, Carol Adams, sitting in the lounge room of the small duplex she shares with her daughter in Willetton, in Perth's southern suburbs. Adds Myint's boyfriend, Blake Graham: "In the last two months, she has probably been out in the sun once."

Her agonising journey into that gloomy, listless world began when she was 24, after she contracted Hong Kong flu during a backpacking trip to England in 1999. While little is known about the causes of the syndrome, CFS expert Professor John Campbell Murdoch of the University of Western Australia says

the most recent theory is that it is caused by a retrovirus. Other theories involve toxic chemicals, immune deficiency and nutritional issues. Adams believes there is a link between Myint's 1999 virus and her CFS, because she "didn’t get better," she says. "When she got back [to Perth], she was so tired. But our GP said, 'You're depressed. There's nothing wrong with you physically.' "

The doctor prescribed anti-depressants, but her condition worsened. According to Murdoch, some medical professionals treat the syndrome as a mental disorder because they "don’t believe" in CFS. (Indeed, Myint's father, clinical psychologist Dr Aung Myint, "does not support Myint in her illness," says his ex-wife, Adams.) Then, on advice from another doctor, Adams took her daughter to a GP specialising in nutritional medicine who "did a lot of testing and said Theda has CFS," says Adams, 67.

Though Myint was relieved she finally had a diagnosis, her condition got worse. "It's like when you have the flu and you feel wiped out and everything is such an effort," says Graham, 27, who suffered from mild CFS for four years from 2002 and met Myint through a support group he runs. But not only is Myint always exhausted, she suffers from other CFS symptoms, including a sensitivity to light and noise, migraines and insomnia, and has an allergic reaction to some food, chemicals and toxins. For our interview, WHO's reporter was asked not to wear perfume or deodorant and for our photograph, Myint could stand only four minutes of natural light. "She used to love the sun and the beach," says Adams. "She can't believe her life has been taken away."

It was a promising life, too. A Bachelor of Arts graduate, Myint had dreams of working as a news reporter and was attending an exclusive broadcasting course at the Western Australian Academy of Performing Arts before she fell ill. To get through her studies, she worked as a hair model. Now,

10 years later, Myint has no career and must rely on loved ones to bathe and feed her. Says Adams: "The other day she said, 'Mum, I'm so disappointed with my life.' " Depression and suicidal thoughts are common among CFS sufferers, and led Myint to raise the subject of euthanasia with her mother. "That was so hard," says Adams.

Still, there remains hope. Murdoch says Myint could benefit from specialist testing in Canada, a country at the forefront of CFS research, but that has a $100,000 price tag. Adams says she

has so far raised $23,000 and has requested financial support from the WA government.

Meanwhile, Myint survives on pain medication. "Honestly, it's like a living death," she says. "Not being able to do anything - the isolation, the physical pain." She dreams of a time she'll be able to leave her bed: "The first thing I would love to do is go to the beach. Even if I couldn't swim, just to put my feet in the water ..." She manages a faint smile, quietly adding, "I couldn't stay in this room for the rest of my life."

Reported by Melenie Ambrose

For more information, go to helptheda.org.au