Chronic fatigue syndrome made me feel like there was toxic waste in my veins, says Dr. Sean O’Sullivan. I’d never experienced anything like it. It’s not like the fatigue after a workout, you are completely exhausted. You feel you have been poisoned.

O’Sullivan, a GP from Tillsonburg, Ont., is a textbook patient for CFS. A hard-working general practitioner with a very active personal life that included white-water kayaking and martial arts, he’d heard about CFS in medical school - at the time it was called Icelandic disease but he’d never diagnosed a case. I’d see some and I’d do testing and would say, ‘I can’t find anything wrong with you, take vitamins, rest, do some exercise.’

O’Sullivan gained personal experience with the syndrome in 1984. He says he was part of a cluster of cases. His sister-in-law, an ER nurse, and a number of her colleagues also got ill. The nurse had an eye infection that both O’Sullivan and his wife, a psychotherapist, contracted. They all wound up with CFS.

O’Sullivan lost 4 months’ work in that first year. In 1985 the medical literature said it lasted 6 weeks to 18 months, so he went back to work full time: delivering babies, working nights on call and emergency, and sleeping poorly. He did it for a year, relapsed, took 4 months off, worked another year, had another relapse, and took 6 months off.

By 1988 he’d learned his lesson and went back to work slowly, gradually increasing his workload. He also started training in psychotherapy and began to see more CFS patients. I’m much better than I was 10 years ago, says O’Sullivan, 53. Medicine made no difference, just time. He also tried alternative therapies - evening primrose oil among others and nothing worked.

He still doesn’t talk much to his colleagues about the condition. There’s no point, he says. They’re not interested. He thinks the Quebec guidelines will help change things a little, but real change will only come with proper scientific results. This disease, he says, changed my life completely.