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"Many people see ME/CFS as something you get and two years later you are over it. Unfortunately this is not the case. It is a condition that can go into remission but many relapse and remain unwell throughout their lives."

Ms Copley said that 70% of people with the condition are too unwell to travel to a doctor or community nurse; 65% have received no information on how to manage the illness; and 80% of people who are bedridden are refused home visits by a medical practitioner. Nurses should become informed and treat ME/CFS seriously, she said.

"To understand the devastating effects on a person's life is critical. It is not a condition that should be trivialised as someone who is just suffering from fatigue because it is extremely serious," Ms Copley says.

The World Health Organisation classified ME as a neurological condition in 1969.

"People can die from this disease. There is no cure and no clear cut treatments. It is about managing the symptoms," Ms Copley said.

ME/CFS Australia (Victoria) distributes the Canadian Clinical Guidelines to health practitioners. These guidelines can be downloaded here.