Published Tuesday, 21 February 2012
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ME cry for help
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Holly Maxwell-Norrie was diagnosed when she was just 14 and was affected by ME until she was 19.
"I couldn't basically move, lay just in the one spot, 23 hours was sleep and the other hour of the day was trying to get food into me or to give me a quick wash," she said.
"Or have a bit of socialisation with my mum or brother or grand parents whoever was in the house at that time."
Now 21, Holly freely admits that she would not have made the progress she has without determination and her family.
She has completed an HND and is re-taking her A levels, hoping to go to university - but she says ME often left her feeling down and depressed.
She believes the health service needs to do more for people who have the condition.
Over here it's basically 'right, you have got ME, away you go' and you are just left to deal with it by yourself
"There is nothing available in my opinion for people in NI," she said.
"My pen pal comes from England and she was telling me there is very little over there, but they have clinics, ME clinics for sufferers to go down to and to get help."
It is estimated there are more than 7,000 people in Northern Ireland with ME and most of them are treated by their GP, as there is no specialist unit within the NHS to deal with the illness.
However in Belfast City Hospital there is a weekly clinic that sufferers can access - to avail of that service, patients need to be fit to travel and have to be referred by the doctor.
Hazel Bland from Saintfield, who has battled ME for 20 years, attended the clinic.
She found the service very useful, particularly the help given by an occupational therapist, but insists more needs to be done.
"What we could do with is someone like a registered nurse who knows the ins and outs of the condition," she said.
"It would be good for someone who could speak to the people who are bedridden and who can't get out anywhere.
"People don't want to come and see you because they don't know how you are going to be, but someone to come and speak to you to reassure you even."
Dr William Weir is the medical adviser to the ME Association.
He believes government needs to spend more money on providing better services for people with the condition and on educating some GPs as to how to make a proper ME diagnosis.
But he says it is also very important that the exact cause of ME is found.
Dr William Weir said: "There was a very prevalent school of thought that this condition was due to a psychological disorder.
"There are still many in the medical establishment who think it is just that, but the evidence I think nowadays is irrefutable in favour of immunological dysfunction.
"Many patients I see tell me they feel they have the flu all the time and it is a very different condition from depressive illness which is sometimes the label which is applied to people with this problem."
NI ME Association telephone: 02890439831
UTV invited the Health Minister Edwin Poots to answer questions about the lack of resources for ME sufferers, but was told he was not available.