From the Ulster Newsletter, 23 February 2012
Before he was diagnosed with ME, 11-year-old Andrew McGorrian adored dancing and playing football. Now, he spends most of his day sleeping, and feels permanently exhausted. His mother tells LAURA MURPHY why more support and medical advice is needed for people in Ulster affected by the condition
UNTIL schoolboy Andrew McGorrian suddenly fell ill with a mysterious virus in January 2009, he was fun-loving and active, and had such a love for dancing, that his family affectionately nicknamed him Billy Elliot.
“He danced to everything – hip hop, country, everything. He just had it in him, it wasn’t that he was taught it,” recalls his mother, 46-year-old Poyntzpass woman Jacqueline.
“He played football as well and would have been in pantomimes and things like that.”
In short, Andrew, now 11, and the youngest in a family of four, was like any other energetic lad his age. He was a pupil at Bessbrook primary school, and is due to start Markethill High School this September, although he has not been in class in over a year.
“He was pretty active,” adds Jacqueline.
“He had fought septicaemia and meningitis but always bounced back.”
But three years ago, everything changed when he fell ill with vomiting and a high temperature and felt so sick that he was admitted to hospital.
“He never came back to where he had been – he was so weak, he slept all the time, had to be carried about. He just no energy and lost his appetite,” his mother continues.
Seven-and-a-half weeks later, Andrew was showing no sign of recovering, and his parents asked for a second opinion on his condition from a paediatrician.
Blood tests and X rays were carried out, “and a year later (the doctor) came back and told us that Andrew had ME / Chronic Fatigue Syndrome”, says Jacqueline.
The Co Armagh woman admits that they were “very lucky” to get a diagnosis;
even though the condition has a range of symptoms, such as mental and physical fatigue, muscle pains, headaches, nausea and heart palpitations, it remains one which is hard to diagnose.
But she feels that Andrew “didn’t get any management or treatment”, and the family were told bluntly that “there was no cure.”
She says they found “there was a lack of knowledge within the NHS” in Northern Ireland, and felt compelled to seek further medical help and advice from health trusts in England.
However Jacqueline remains certain that a cure for ME will one day be found, and has told Andrew that he will get better.
“He really has slipped badly at the minute,” she says, describing her son’s daily life currently.
“He sleeps most of the day. He might waken for an hour or two on a good day but is really very tired and lacking in energy. When he wakens we focus on eating.
“We would read to him and things like that, but when Andrew is going through a spell like this he really does need quiet. He can’t tolerate much light.”
She says that her son must feel as if he has the flu permanently, and as well as extreme tiredness, suffers soreness on a daily basis.
“The pain is very severe at times. We bought Andrew a mobility scooter and he can’t even sit on it.”
And she has hit out at those who remain sceptical about the illness, attributing such attitudes to “ignorance and a lack of understanding.”
She adds: “We need more recognition by medical people and we need the NHS to bring the services to Northern Ireland that they have in England.”
One source of support for Jacqueline and her family has been the Newry and Mourne ME Fibromyalgia Support Group, which was founded last year by Joan McParland.
“My support group committee is made up of patients with only one able-bodied helper,” Joan says.
“We are raising money for much needed biomedical research into the cause and hopefully one day, a cure for this illness. All the ‘work’ we do is at great expense to our already declining health, such is our desperation to bring Northern Ireland out of the ‘dark ages’ concerning this illness and get some proper help and support for patients.”
The group has also managed to secure the attendance of a leading clinician and researcher in the field of ME and fibromyalgia, Dr Derek Enlander, at a meeting they are having with health professionals at the Landsdowne Court Hotel in Belfast this day week.
“While Dr Enlander is in the province, he kindly agreed to give a conference for both patients and professionals on the subject of diagnosing, treating and the latest research from around the world,” says Joan.
“This will be a unique opportunity for both patients and interested professionals to both be educated and made aware of the scale of the problem here.”
Anyone wishing to book a place at the conference, which takes place on Thursday March 1, at 7.30pm, can do so by emailing email@example.com.