Gráinne McCarry : ‘ME has stolen my son’s life, but there’s no help’
ME sufferer David Christie (15) has to spend 19 hours a day in bed. His mum, Antoinette, talks to Gráinne McCarry
As a young boy, David was involved in everything. He was a scout and he loved trampolining and horse riding. He would have played any sport and he was an Irish national champion in ju-jitzu in 2002. He was no different from any other wee boy. He was always outdoors and he never gave me any trouble. He got involved in everything that was going. He was such a thoughtful child — a wee gentleman.
His sickness began when he developed a rash in February 2003 at the age of 10. The dermatologist at the Royal Children’s Hospital in Belfast had never seen it before. He took photographs and a biopsy and diagnosed David with the skin condition pleva, which is caused by a viral infection. He was given cream for it and still attends the dermatologist to this day about it.
The following year, David began St Mary’s Grammar School. He was so alive and full of energy and he used to walk six miles every day to school and back. Then, all of a sudden he started to lose his energy and we had to give him a lift to the school gate because he wasn’t fit to walk it.
When his condition deteriorated, he didn’t have the energy to walk from the gates up the steep hill into school. We got a special pass from the principal to drive to the school gates. Then, it got to the stage where he couldn’t manage school at all.
After six and a half months of his first year there we had to take him out of school. He wasn’t fit to attend.
He was complaining of chest pains, nausea, fatigue and a general feeling of unwellness. For a long time, we didn’t know what was wrong with him. He was diagnosed with ME (Myalgic Encephalomyelitis) in October 2005.
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ME is a multi-symptomatic, organic disease which affects each sufferer differently. David’s symptoms include hallucinations, disturbed sleep, memory loss, aches and pains, concentration difficulties, mouth ulcers, sore throats and balance and co-ordination difficulties.
I was working as a fitness instructor at the time, taking classes in different leisure centres around the city, but I had to give it up to take care of David. I take a couple of classes every week now, but I feel guilty leaving the house.
His schoolfriends have all moved on. I doubt if any of them would recognise David if they saw him today.
He has long curly hair to his shoulder because he hasn’t been able to get it cut. He just looks ill ... he doesn’t look like himself. The ‘David’ everyone else remembers was a swarthy, good-looking wee boy. Now, he can’t even manage to wash his hands and face by himself.
He was given anti-depressants when he was 14 and he just lies in bed 19 hours a day. It wouldn’t be fair to take a photograph of him as he is now. He’s lost touch with everyone. He’s growing up in his bed and has no contact with anyone outside of the house ... just me, his daddy, Paul, and his two brothers, Paul junior and Conor.
Even to get him to his medical appointments is a struggle. People don’t understand the effort behind it all. The consultant doesn’t see what we have to do to get David to the hospital. For a lunchtime appointment, I have to start waking him at 9.30am in order to get him washed and dressed on time. His muscles have deteriorated so much that if he could make it down the stairs that would be an extremely good day for him. He only ever goes outside when he has a hospital appointment.
Another ME sufferer explained the disease to me as living in a semi-coma. When David is awake I tell him things and the next time he wakes up he can’t remember them. He couldn’t believe it when I told him that his big brother Paul was 21. He just kept repeating “21”. He was so shocked.
Life is passing him by and it breaks my heart to see him like this. He should be at school studying and hanging out with his friends. He’ll never get those years back. His time as a teenager is a very important part of his formative years.
Life is continuing on when he is asleep. A few weeks ago he asked me when Mother’s Day was. When I told him it was over, he was so annoyed. I can’t even say he lives his life because he doesn’t live. He exists. It’s a living death.
His diet’s very poor, he’s underweight. He’s growing into a young man in bed. We didn’t know much about the illness until David was diagnosed with it. I’d heard of it, but I didn’t realise how severe it was.
Terms like ‘yuppy flu’ and ‘the sleepy sickness’ are an insult to ME sufferers. ME has been a recognised illness by theWorld Health Organisation since 1969 and by the Royal Society of Medicine since 1978.
There’s absolutely no help for David here. ME sufferers here are offered a psychiatrist in Northern Ireland. David does not need a psychiatrist. He needs someone to help him get better.
There are two types of therapy available here — Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET).
The first tries to get the patient to change their attitude towards their illness. David doesn’t have an attitude towards his illness. He doesn’t have the energy to have an attitude.
The other option, GET, is too dangerous for David as his muscles are extremely weak.
What is being offered in Northern Ireland is psychiatric care. ME is not a psychiatric illness. There is a significant amount of research out there proving that ME exists. Recently, Dr Derek Enlander, an Ulster-born doctor who practices in New York, came over to see a small number of ME sufferers in Belfast at a private clinic on the Antrim Road.
From David’s medical notes, he was able to tell me that my son tested positive for the Cosackie B virus which is a variant of ME when he was 18 months old. He took sick with a virus then and it must have been in his system since.
Dr Enlander said that David’s immune system was dysfunctional. He was given tablets and medicine containing vitamin and minerals, and a weekly injection. This is not a cure, but if it works it could boost his immune system by 65%. It costs me £240 every month to pay for this and I can’t afford it.
David got his heart tracked by a scanning machine and it showed that his heartbeat was irregular, also.
I’m more angry now than I’ve ever been. To think that this medicine I’ve received from Dr Enlander has been out there all this time. We just didn’t know about it. It angered me that David’s been left to deteriorate this far.
If we’d known about this sooner, David could have been relieved of some of his suffering.
It’s a national scandal that ME sufferers can only get this type of treatment if they are prepared to pay for it. David has been neglected for far too long. He has been left to waste away in his bed. It’s so desperately inhumane.”