Emma Shorter was in her first year at St Andrews University when she was hit by the illness also known as Chronic Fatigue Syndrome.
It happened four years ago and has left the formerly fit and active young woman virtually housebound and having to use a wheelchair and a mobility scooter.
She has seen more than 20 doctors but says they did not understand the condition.
Shorter, 23, was speaking ahead of the Millions Missing protests being held in 13 cities across the world, including Edinburgh, where demonstrators will gather outside the Scottish Parliament on Friday. There are 21,000 Scots who have been diagnosed with ME.
Organisers say the event is called Millions Missing to symbolise the millions of people with ME who miss out on everyday life and the millions of pounds missing from research into the devastating illness.
People with the condition who are too ill to attend are sending pairs of shoes with a label telling their story.
Shorter, from Edinburgh, said: “I got sick when I was 19 and very active – hillwalking and playing hockey. Suddenly I found myself basically unable to walk.
“I had all these symptoms – if you run 5k you might feel a bit achy, whereas I was trying to walk down the stairs to get my dinner and I’d be unable to walk any further.
“I was starting to collapse in different places and my friends would have to carry me home.
“I’d be trying to walk somewhere and my body would start shutting down – I’d go this awful yellow pale colour and I’d be stumbling around, because your balance goes, and eventually I’d have to lie down.
“It feels like your body is shutting down – your brain goes, your stomach goes and eventually I got so bad that I’d been in bed for two hours and was really thirsty but I couldn’t move my hand to pick up a glass of water.
“It’s the most effective prison in the world. The cognitive problems and resulting difficulty with speech is frustrating and can make communicating hard.”
Stuart Murdoch, lead singer of the band Belle and Sebastian, has ME and is supporting Millions Missing.
He appealed to the Scottish Government and NHS Health Scotland to act.
He said: “We are ghosts, us ME people. Disregarded, ignored, and at worst, not believed.
“It doubles the burden. We are sick, but you do not see we are sick. We cluster with each other for help and support, like urban lepers.
“All we want is to get better. All we want is to prove that we are worth something. Funding, research, dedicated rehabilitation programmes – these could be the key to the door for so many. We’re not going away.”
At present there is no recognised cure or treatment for ME (myalgic encephalomyelitis) which is described as a systemic neuro-immune disease by researchers at Stanford University who are looking into genetics and metabolism in a bid to gain a better understanding of the illness.
Shorter added: “With current research into the cause and possible treatment, there is hope for treatment in the ME community for the first time in decades. Most of the high quality research being done is being funded by patients themselves.
“We desperately need more money for clinical trials and research into treatments. We need universities to teach doctors about ME and training for health professionals to help them understand this complex disease.”