From Ulster TV, 9 February 2012.
Thousands of people across Northern Ireland suffer from ME, also known as Chronic Fatigue Syndrome, but they say there is not enough medical help in the region.
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.
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.
TRANSCRIPT OF THE PROGRAMME SUPPLIED BY RUSSELL FLEMING (thanks, Russ!):
UTV Live Tonight 9th February 2012. ME sufferers call for help.
You Tube: www.youtube.com/watch?v=kWsaXGefm1E
‘It’s half past 10 on Thursday the 9th February , you’re watching UTV Live Tonight. Good evening I’m Paul Clark. Welcome to the programme.
ME sufferers say they need more help. We speak to this eleven year-old boy, once full of life who’s now in constant pain and bedridden…
…He’s eleven years-old but cannot do anything without the help of his parents. Andrew McGorrian has ME. A debilitating condition which has left him bedridden. Campaigners say more needs to be done while others say it’s not an illness at all. Our reporter Sharon O’Neil has the story:
[Andrew dancing (pre-illness) on stage]
Sharon: Andrew McGorrian loved to dance and was star of the show here at Market Hill Fair two years ago. Today, aged just eleven, Andrew is virtually bedridden, in constant pain, all because of ME.
Andrew [lying in bed]: I can’t go to toilet. I…can’t really do anything.
Sharon: Andrew was diagnosed with Chronic Fatigue Syndrome after he developed a virus. It was gradual and then became severe.
Jacqueline McGorrian [Andrew’s Mother]: I’m sad that our child has to suffer like this. I’m really…we’re heartbroken as parents to be honest. It’s a very hard cross to have to carry to be honest and the lack of understanding doesn’t help. But it’s very hard on a daily basis to have to watch it.
Sharon: Andrew hasn’t been to school in over a year and can only stay awake for two hours at a time.
Jacqueline: On Andrew’s worse days, Andrew wouldn’t waken up. He would sleep for up to maybe twenty, twenty-one hours a day. He would physically not be able to care for himself. He would have to be lifted to the bathroom and back again. We even had to feed him. We have to hold drinks for him. Just…His life has changed back to where he was when he was a baby.
Sharon [talking to Andrew]: Do you know much about the illness you have?
Sharon: Tell me?
Andrew: Mummy explains it to me.
Sharon: Me is difficult to diagnose. There are many symptoms: mental and physical fatigue, muscle pains, headaches, nausea, and heart palpitations – all symptoms Horace Reid knows only too well. He’s had ME for nineteen years:
Horace Reid [Adult ME sufferer]: It’s called Chronic Fatigue Syndrome, but this is not ‘fatigue’. This is the kind of malignant tiredness that you would get with a bad dose of flu or a chest infection or cancer. Or the way you would feel after you had radiotherapy. It’s that kind of ‘fatigue’. It’s a fatigue which will knock you off your feet. You’re much more than tired. With the best will in the world…most of the day…most days…you don’t want to get out of bed.
Sharon: How big is this problem? It’s estimated a quarter of a million people in the UK have the illness, here it runs into the thousands [Graphic: ‘2,000-4,000 in Northern Ireland’] . Because it is so difficult to diagnose many believe it is much more. Joan McParland set up her own support group in Newry and Mourne and is helping the McGorrian family…
Joan McParland [Adult ME sufferer]: The first night we opened the support group in Newry, I thought the people we never going to stop coming through the door. There was 50 people turned up. Since then – that’s approximately eight months ago – my phone doesn’t stop ringing, and I’m getting constant emails from people who are totally bedbound, or people with children and they’re all in a very distressed state looking for help. But we have no help here at all. All we have is our support group.
Sharon: Getting the right help here hasn’t been easy for the McGorrian’s. There is only one ME specialist in the whole of Northern Ireland.
Jacqueline [Andrew’s Mum]: ME/CFS. That’s what we were told. And…that was it! We were left to our own devices after that. To decide what it was. How it was going to effect him. And our biggest question was – ‘When was Andrew getting better?’ That was all we wanted to know. And we went through a denial that this was going to take months. We thought Andrew had done his months. He’d done his year. And, you know, time was of the essence for us to try and pick him back up, you know, we’d give him vitamins, things like that, good food, good vegetables, fish, oils, everything – we tried everything. And then had to resort to the internet for back-up, because we just couldn’t go anywhere.
Sharon: Medical opinion is divided on this condition. Some believe it’s psycho-somatic and have even referred to it as ‘Yuppie Flu’.
Joan McParland: To live this life is bad enough, but to try and face the scepticism, the disbelief and even the ridicule – from both, in fact some medical – not all medical professionals – but from some, and the general public; is very very hard to deal with on top of having an illness.
Horace Reid [Adult ME sufferer]: You’ll get sympathy for the first three months, and after that the outside world becomes bored with your predicament. And then at the one year mark, they become sceptical. And then, if you leave it two years they become actively hostile. So, if you have ME or any other chronic illness and you have it long-term – and you don’t actually die, you know, if you don’t captivate your audience’s interest – then, you are not going to get sympathy.
Sharon: With no cure and no one specific treatment, the McGorrian’s can only take one day at a time.
Jacqueline [Andrew’s Mum]: I’ll continue to fight for Andrew. And his Daddy will continue to fight for Andrew until things improve. Until Andrew’s back being Andrew. That’s what we want. We want our Andrew back the way he was, the chirpy, jokey, child round the table. The singer. The joker. You know? And the one who could keep everyone going in the house. That’s what we want back and we’ll not stop until we get it back.
Sharon: Despite this debilitating illness, Andrew is still positive. [To Andrew who’s in bed] What would you like to do?
Andrew: Just play football for thirty minutes……even…five minutes.
Sharon: This family hope that by telling their story more people will realise what life’s really like with ME. Take this condition seriously, and pump more money into finding a cure. Sharon O’Neil UTV Live Tonight.
Paul Clark [Studio presenter]: In the studio is GP, Dr John Kyle, and the Deputy Chairman of the Health Committee, Jim Wells. John Kyle, there’s a debate about whether or not ME is a real medical condition. Can it be medically explained?
Dr John Kyle: Well, it’s a complex condition Paul, and we certainly don’t understand it. Nor do we know precisely what causes it. But it is a real medical condition. It’s accepted now this is a genuine, bona fide, medical condition. It’s a chronic, long-term debilitating condition. It cannot be diagnosed with a simple test, but it is recognised that it genuinely exists and patients are effected by it.
Paul: And do you believe, Jim Wells, that the service out there is adequate at present for these people?
Jim Wells: No, it is totally inadequate Paul. Indeed there is only one specialist in the whole Ulster province covering thousands of sufferers. When that person is on holiday or away, there’s no coverage at all, so we really need to have a much more effective service provision for these people – some of whom are almost entirely bedridden.
Paul: You talk about thousands of people. How can we be sure how many people there are out there?
Jim Wells: It’s difficult because there are various variations in ME, ranging from ‘mild’ to really causing people to give up employment and who are basically housebound. So it is hard to define actually how many people have this – I would say it is somewhere between two and four thousand in Northern Ireland. I have met several sufferers where I have seen the before and the after. Before they had ME and afterwards and it is like night and day. Totally different and so I am convinced it exists as well.
Paul: How limited are doctors in what they can do to treat their patients?
Dr John Kyle: Well, this is part of the difficulty with it Paul. The patient looks perfectly well, but they feel absolutely dreadful. And in terms of treatment options, they are limited. So really what doctors can offer is first of all they can offer a diagnosis: they can tell a patient ‘This is what you have.’ And that, often, is a step forward for the patient. They can provide information about the nature of the illness, and the normal course of the illness, and there are some treatments that are of some benefit. CBT, Cognitive Behavioural Therapy, can be beneficial. A Graded Exercise programme, that can be beneficial. Sometimes, if a patient is suffering, understandably, from depression as a result of it; antidepressants, can be helpful. So there are limited treatments that are beneficial, but no cure.
Paul: And there’s a further complication surely, in that the patient is not going to know, how long this is going to last?
Dr John Kyle: Well this is what adds a lot of the stress and difficulty that surrounds the whole problem. The patient doesn’t know if this is going to last for six months, six years, twenty years. And the carers, the family, they don’t know either. So it’s this uncertainty and the prospect of continued debility, that is so difficult for people to cope with.
Paul: And in the case of children, that must be very distressing, because it is going to interrupt their education…
Jim Wells: The very worrying trend is the increasing number of children who have ME and for many of them, they’re stuck at home and they can’t get to school, they’re education is suffering; and they’re looking forward at their entire life and wondering whether they will continue to have this debilitating disease. So that’s something I’ve become much more aware of in recent years…
Paul: Are there plans on the Health Committee then to make this a priority?
Jim Wells: Well I’ve been heavily lobbied by a Group in Newry, also Horace Reid from [?] on this issue. They believe there is an urgent need to improve – and to have some form of specialist clinic in Northern Ireland which will have the capacity to deal with all the sufferers. And we don’t have that at the moment.
Paul: Will we?
Jim Wells: I don’t know. It’s something we are looking at at the moment. It’s something that the Service Providers are going to have to examine, but certainly we need to start to take this condition seriously.
Paul: But it’s probably not going to be top of the list of the Health Minister…
Jim Wells: No it’s not, but it is time all the conditions [?] accept ME and treat it seriously and I am not convinced that’s happening.
Paul: John, there is no cure for the condition, so what hope is a doctor able to offer to sufferers?
Dr John Kyle: Well, Paul, first of all many patients recover or make an excellent recovery from ME or Chronic Fatigue Syndrome. But the recovery is long and it can often be…there can often be many setbacks and relapses, but first of all you can offer the hope that for many patients they do make a recovery. Secondly, they need to know that there’s support, that people understand, and providing emotional support, advice, professional advice in terms of their exercise programme, how to cope with the psychological consequences of the illness; and by providing that support, that does help patients and families to cope with what is obviously a very difficult illness.
Paul: John Kyle, Jim Wells, thank you both. And if you’d like to share your experiences or need advice on ME, then visit our website, that’s www.u.tv/News/ME-sufferers-call-for-help/6277f984-2112-4387-820d-5d92e19f2493