The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

UTV: Northern Ireland: ME Sufferers call for help

Discussion in 'General ME/CFS News' started by Firestormm, Feb 10, 2012.

  1. Firestormm


    Cornwall England
    8 February 2012:

    Two video/news features. The second is an 'analysis'. The first features a very brave lad and some great input from others affected I thought.

    '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.'

    The Northern Ireland ME Association helpline is 028 90439831.
  2. Merry

    Merry Senior Member

    Columbus, Ohio, USA
    Thanks, Firestormm. I couldn't watch the video but am glad for the text and the comments at the website. I take from the comments that in one or both of the videos a claim is made for the benefits of GET.
  3. merylg

    merylg Senior Member

    Sydney, NSW, Australia
    Thanks Firestormm. The video can be seen in Australia if you click on the small image below the main picture, labelled "call for help".

    PS The analysis is #%&*!
    fla likes this.
  4. Firestormm


    Cornwall England
    Yeah it was. In the 'Analysis' studio debate clip. I might try and transcribe actually as it was in a context (I seem to recall) of 'there's not a lot we can do, but...' sort of thing.

    Will give it whirl after a rest.
  5. maddietod

    maddietod Senior Member

    East Coast, USA
    I couldn't watch it either, but I could read the comments. Look at this from this morning!!

    "At 10:57 on 10 February 2012, Jacqueline Mc Gorrian wrote:
    Firstly thank you so much to the UTV production team especially Sharon O Neil you done a fantastic job. Andrew was doing much better until the intervention of G.E.T I would not recommend this to any severe case it has made our child worse and also we had a diagnosis but to see a specialist we had to go the private route as well. Jim wells and Danny Kennedy are trying to make changes show them your support please"
  6. Vitalic

    Vitalic Senior Member

    I'm guessing that wasn't mentioned in the article or video.
  7. *GG*

    *GG* senior member

    Concord, NH
    Yeah, like a kid who WISHES he could play football for 5 minutes, but CANNOT, sleeps 20 hours a day, NEEDs exercise!! (to cure his illness). Most people benefit from exercise, but NOT in our case.

    What a disgrace!

  8. Firestormm


    Cornwall England
    Even NICE doesn't recommend GET for severe patients if I recall correctly. What the heck were they thinking?!!!

    Thanks for the find. Poor, brave kid :sad:
  9. Firestormm


    Cornwall England
    Here's me transcript effort. Usual conditions apply: i.e. I might have made mistakes! :cool:

    UTV Live Tonight 9th February 2012. ME sufferers call for help.

    You tube:

    Its half past 10 on Thursday the 9th February [2012], youre watching UTV Live Tonight. Good evening Im 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 whos now in constant pain and bedridden

    Hes 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 its not an illness at all. Our reporter Sharon ONeil 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 cant go to toilet. Icant 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 [Andrews Mother]: Im sad that our child has to suffer like this. Im reallywere heartbroken as parents to be honest. Its a very hard cross to have to carry to be honest and the lack of understanding doesnt help. But its very hard on a daily basis to have to watch it.

    Sharon: Andrew hasnt been to school in over a year and can only stay awake for two hours at a time.

    Jacqueline: On Andrews worse days, Andrew wouldnt 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. JustHis 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?

    Andrew: Yes.

    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. Hes had ME for nineteen years:

    Horace Reid [Adult ME sufferer]: Its 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. Its that kind of fatigue. Its a fatigue which will knock you off your feet. Youre much more than tired. With the best will in the worldmost of the daymost daysyou dont want to get out of bed.

    Sharon: How big is this problem? Its 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 thats approximately eight months ago my phone doesnt stop ringing, and Im getting constant emails from people who are totally bedbound, or people with children and theyre 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 hasnt been easy for the McGorrians. There is only one ME specialist in the whole of Northern Ireland.

    Jacqueline [Andrews Mum]: ME/CFS. Thats what we were told. Andthat 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. Hed done his year. And, you know, time was of the essence for us to try and pick him back up, you know, wed 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 couldnt go anywhere.

    Sharon: Medical opinion is divided on this condition. Some believe its 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]: Youll 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 dont actually die, you know, if you dont captivate your audiences interest then, you are not going to get sympathy.

    Sharon: With no cure and no one specific treatment, the McGorrians can only take one day at a time.

    Jacqueline [Andrews Mum]: Ill continue to fight for Andrew. And his Daddy will continue to fight for Andrew until things improve. Until Andrews back being Andrew. Thats 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. Thats what we want back and well not stop until we get it back.

    Sharon: Despite this debilitating illness, Andrew is still positive. [To Andrew whos in bed] What would you like to do?

    Andrew: Just play football for thirty minutes......evenfive minutes.

    Sharon: This family hope that by telling their story more people will realise what lifes really like with ME. Take this condition seriously, and pump more money into finding a cure. Sharon ONeil UTV Live Tonight.

    7.00 minutes.

    Paul Clark [Studio presenter]: In the studio is GP, Dr John Kyle, and the Deputy Chairman of the Health Committee, Jim Wells. John Kyle, theres a debate about whether or not ME is a real medical condition. Can it be medically explained?

    Dr John Kyle: Well, its a complex condition Paul, and we certainly dont understand it. Nor do we know precisely what causes it. But it is a real medical condition. Its accepted now this is a genuine, bona fide, medical condition. Its 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, theres 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: Its 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 theres 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 doesnt know if this is going to last for six months, six years, twenty years. And the carers, the family, they dont know either. So its 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, theyre stuck at home and they cant get to school, theyre education is suffering; and theyre looking forward at their entire life and wondering whether they will continue to have this debilitating disease. So thats something Ive 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 Ive 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 dont have that at the moment.

    Paul: Will we?

    Jim Wells: I dont know. Its something we are looking at at the moment. Its something that the Service Providers are going to have to examine, but certainly we need to start to take this condition seriously.

    Paul: But its probably not going to be top of the list of the Health Minister

    Jim Wells: No its not, but it is time all the conditions [?] accept ME and treat it seriously and I am not convinced thats 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 bethere 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 theres 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 youd like to share your experiences or need advice on ME, then visit our website, thats

    taniaaust1 and anne_likes_red like this.
  10. Frank

    Frank Senior Member

    Video: ME sufferers call for help, kid with ME

    anne_likes_red likes this.
  11. Nielk


    It's always doubly sad when young children are affected. I was impressed with the interview....until a doctor said that at present rhe beat treatments are CBT and GET and anti-depressants!
  12. Boule de feu

    Boule de feu Senior Member

    Ottawa, Canada
    Thank you very much for this.

    It is always interesting to see how other countries perceive ME
    I don't think I have ever seen a Canadian child bedridden with ME?

    Could you give me the link for this vIdeo? I would like to see the part on asbestos.
  13. Firestormm


    Cornwall England
    Morning Neilk,

    One of the reasons I attempted the transcript was to try and set those comments in context, because I didn't think it was 'as bad' as I have seen it said before:

    However it was interesting to note that the GP starting talking in his last comment about support being available - which seemed a rather 'at odds' thing to say when the whole programme had been about the distinct lack of support.

    Very strange. And Jim's reaction (his body language) seemed to reflect this oddity which I thought was worth noting. I guess he felt (as they tend to) that he'd better end on a 'positive' even if this was stretching the truth rather a lot!

    Hi Boule,

    I don't have (can't find) that link I am afraid. I am sure it was on the website somewhere though. Having said that they don't appear to feature the full programme all the time.

  14. Firestormm


    Cornwall England
    I still believe in a cure for my son

    23 February 2012:


    Andrew's McGorrian motherJacqueline at his bedside. Andrew sleeps for 22 hours of the day due to his condition. 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. 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.

    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.

    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 wasnt 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 didnt 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 sons 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 cant 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 cant 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
  15. Ember

    Ember Senior Member

    Andrew has now been offered help by Dr. Jamie Deckoff-Jones. Dr. Enlander has offered his help as well.

    Here's the podcast:

  16. Ember

    Ember Senior Member


    Expert treatment in Hawaii Andrews only hope from ME

    Published on Saturday 21 April 2012 09:00

    THE family of an ill Makethill boy have launched a fund to send him to Hawaii for specialist life-enhancing treatment.

    Andrew McGorrian-McMurdie (11) has been virtually bed-ridden for three years since he contracted ME (Myalgic Encephalomyelitis) from a viral condition.

    And his family say that when he is able to get up on his best days for about three hours, he is wheelchair bound and scarcely able to move.

    With all efforts by the NHS appearing not be to working, his mother Jacqueline and father Trevor believe that his only hope is a two-months course of treatment at the Hawaiian clinic of world expert Dr Jamie Deckoff-Jones, who has treated herself and her daughter to bring their debilitating ME conditions under control.

    The McGorrian-McMurdies - who live in remote Tyrones Ditches between Markethill and Poyntzpass - were put in touch with the doctor by ME sufferer Barbara Kell, from South Shields in Englands north-east, whom they met at a conference in Belfast last year.

    Said Barbara, When I saw Andrew being carried on his mothers back out of the conference my heart went out to him. His young life is being wasted. My condition is serious and I am confined to a wheelchair, but it is not as serious as Andrews and I felt I had to do something.

    I follow Dr Jamies blog closely, and while there is no cure, she had improved the condition of many people to the point where they can live a useful life again. She, for example, was so bad they she had to quit practising, but now shes running her clinic again, commuting from her home in Santa Fe to Hawaii regularly.

    Before ME struck, Andrew was known in and around Markethill as the local Billy Elliott, so active and entertaining was his solo dancing at various functions. He also loved football, basketball and hockey where his footwork was a great asset.

    But all that has stopped, said mum Jacqueline. Some days he sleeps around the clock, and on better days he can get out of bed and sit in the wheelchair for three or four hours.

    Hes had to leave school (St Peters Primary Cloughreagh) and has a tutor once a week when he can face it - Norman Glass is his tutor and is terrific, but its so restricted. Andrew loves war history, the Titanic story and planes.

    Hes due to go to Markethill High School next year and would love that. He has ambitions to join the Army. But theres so little hope. We feel that Dr Jamie is his last hope. The NHS has virtually given up on him. They delivered a hospital bed this week, and we felt that an iPad would help his education, but they cost about 400 and funds wont stretch to that.

    I have spoken to Dr Jamie on skype and am very encouraged by what she has told me. Her results are very positive and she believes she can improve Andrews life significantly. Its heart-breaking watching a son we love, and who used to be so active, suffering like this.

    The six-to-eight weeks in Hawaii would cost thousands of pounds, with travel, accommodation and treatment all factored in. And fundraising efforts are being set up by Barbara in South Shields and Andrews family and friends at Tyrones Ditches.

    The County Armagh contingent is setting up a sponsored bed-push from Newry to Armagh and a dinner-dance, both in May, as starters, while Barbara is organising coffee mornings, a coast-to-coast bike ride across the north of England and is trying to get the local football club Sunderland involved.

    This young life will have to be improved, said Barbara. Dr Jamies methods have been proven to work. She offers one-to-one treatment in Hawaii, with back-up treatment when Andrew returns home.

    Donations are through the Nationwide Building Society, account number 07024625740427.
  17. Firestormm


    Cornwall England
  18. Marco

    Marco Grrrrrrr!

    Near Cognac, France
    Frustration and desperation are not conducive to sound decision making.

    This kid was 'diagnosed' with CFS after what appears to be a viral infection but also has a prior medical history which includes meningitis.

    Given how arbitrary a NHS 'diagnosis' of 'CFS' is and the NICE guidelines ruling out extensive testing who knows what the problem is?

    His mother is quoted as saying how relieved she was to get a 'CFS' diagnosis. I do hope she realises this amounts to little more than your son fits into the 'we don't know' dustbin.

    Jamie D-J may be well meaning but she is far from being an 'expert' and none of her theories or treatments are proven. Even bona fide experts such as Nancy Klimas can't offer more than palliative treatment.

    Consenting adults is one thing but this is an 11 year old kid with an unknown illness being offered unproven treatment with unknown potential side effects and at major expense I would imagine.

    Sorry to come across like one of the 'uber-skeptics' but if I were the parent I'd go back to my GP, reject the rubbish diagnosis and demand that they run as many tests as necessary to rule out all other possibilities.
    allyb and Firestormm like this.

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