Published Thursday, 09 February 2012
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Andrew McGorrian is bedridden and in constant pain at just 11-years-old. He contracted a virus and has never fully recovered.
His mother Jacqueline said she was "heartbroken" at the difference in her once lively and energetic son.
"At the beginning, he couldn't lift his head, or eat. We thought we were going to lose him," she explained to UTV.
On his worst days, Andrew wouldn't waken up. He would sleep for 20 hours a day. He would have to be lifted to the bathroom and back again.
Jacqueline McGorrian, whose son Andrew has ME
"His life has changed and we're back to where he was as a baby."
Andrew has not been to school for more than a year and can only stay awake for two hours at a time. He said he "can't really do anything".
"I would like to play football for 30 minutes. Even just for five minutes," said Andrew.
Although ME has many symptoms, which include mental and physical fatigue, muscle pains, headaches, nausea and heart palpitations, it is difficult to diagnose.
It is believed around 250,000 in the UK suffer from it, but experts say they think the figure could be much higher.
Horace Reid, a former nurse, has had ME for 19 years and the illness has forced him to stop working.
"You get hit with something that feels like the flu. You push yourself to try and push the flu off. But it's not the flu and the harder you try to throw it off the worse it becomes," he said.
He explained that he stays on a mattress in his house for five days of the week because he does not have the energy to go out.
If you've only got a small amount of energy in a day, then you cannot possibly get through a lot of things that you normally would. There is no way that I do the hoovering or cut the grass.
Horace Reid, ME sufferer
Joan McParland, who has had ME for 13 years, is trying to help people in the Newry who also suffer from the condition.
Some people, including doctors, still regard Chronic Fatigue System with scepticism, which having spent five years bedridden, she has found difficult to handle.
"To live this life is bad enough, but to try and face the scepticism, disbelief and even the ridicule from some medical professionals and the public is very hard to deal with, on top of having an illness," she said.
Joan started up the support group eight months ago and is trying to make life easier for the McGorrian family who, like many others with ME, have found information on the illness difficult to come by.
"The first night we opened the support group in Newry I thought people were never going to stop coming through the door.
"Since then, my phone doesn't stop ringing. I'm constantly getting emails from people who are bedbound or people with children and they're all in a very bad state," added Joan.
NI ME Association telephone: 02890439831
The McGorrian family want to highlight what Andrew's life is like and how people with ME really live, in the hope that more money will be pumped into finding a cure for the condition.