Mary Minchin from Leighlinbridge was a busy woman pre-January 2010. A mother of four and suckler farming with her husband, John, she was very active in IFA circles, serving as IFA Carlow County secretary, for example. She was also working as a health care assistant for the HSE and the Irish Wheelchair Association.
This work meant driving from house to house to visit clients.
She got the swine flu jab in January 2010 having been advised, like everyone else in her profession, to do so in order to protect clients with serious health conditions from getting the virus.
“You felt like you should get the vaccine because you owed it to people with underlying conditions not to bring swine flu into the house,” she says.
All went well, she says, for a month or so after the Pandemrix vaccination on the 23 January 2010, but then she began to feel very tired.
STOPPING FOR NAPS IN THE CAR
“I found myself having to pull up and have a nap in the car when I was going from one house to another because I was that sleepy,” she says. “And I was falling asleep at work. I used to read the papers with one client and next thing I’d have nodded off. His wife would always ring to see if I’d got home okay as she was so concerned.”
Mary also found that she was becoming more forgetful and dropping things. Vivid dreams and hallucinations were another stress in her life.
“They were unreal. I’d be agitated for a long time after them,” she says.
Driving obviously became very dangerous, so she had to give it and work up within months.
Initially her doctor had diagnosed extreme fatigue and she had suspected multiple sclerosis herself but she knew it was something different when she started experiencing seizure-like cataplexy.
This is when she would fall and for several minutes could neither move nor talk although she was conscious of everything going on round her.
“It is muscle paralysis,” she says, “and is usually triggered by strong emotions like laughter or anger. I remember one day coming down a street in Carlow. I grabbed a lady and said: ‘Don’t let me fall.’ Down I went and I was on the ground for 20 minutes. I felt people were thinking ‘is she drunk or on drugs’.”
It is because people don’t understand what narcolepsy and cataplexy are like that she is bringing her story to the public, she says.
“Every time I say I have narcolepsy/cataplexy they say ‘what is that’?
NO LINK WITH VACCINE INITIALLY
Unlike some of those affected, Mary got an early diagnosis after presenting at the emergency department of a Dublin hospital in May 2010 following a cataplexy occurrence.
“The doctor hit it on the head – narcolepsy and cataplexy.”
While Mary knew, at that point, that she couldn’t drive or work anymore after that diagnosis, no link was made with the swine flu jab at the time.
She subsequently went on medication to help control the condition but it is never fully controlled, she says. To this day – nine years later – she still falls asleep about three times a day and the cataplexy occurs occasionally too.
STUDIES IN SCANDANAVIA SHOWED LINK
Watching the BBC news in August 2010 made her sit up in her chair, however.
“They were saying that in Finland and Sweden there had been a huge increase in narcolepsy and cataplexy after people got the swine flu jab, Pandemrix, especially in children. What had happened to me then made sense. I’d had none of these things before I got the jab and now here I was unable to work.”
The sudden falling asleep and the disturbed sleep weren’t the worst aspects for Mary, however. Instead it was the cataplexy.
“You could be out and you’d just go down – fall on the pavement or wherever. There is terrible uncertainty and worry in it and you’re a while trying to get yourself back after them too.”
Farm involvement limited
Mary now has many limitations in her life due to her conditions. The biggest one is not being able to drive.
“I was doing 40,000 miles a year but now if I want to go somewhere I’m depending on a lift, so my independence is gone.”
Her involvement on the farm is more limited now, too.
“I was the one who’d be taking down numbers when they’d be reading cattle. I remember one day cattle were in the crush and I was taking down the numbers and it was just one big squiggle on the page. All my husband and son could do was look at one another. I used to be good at that stuff and doing the farm books.”
FIRST CASE IN COURTS IN OCTOBER
Mary is sad and angry about what has happened to her and, like many others in the support group SOUND (Sufferers of Unique Narcolepsy Disorder), is suing the State, the Minister for Health and GlaxoSmithKline (GSK), the makers of the vaccine.
The first case will hit Irish courts on the 8 October. Mary’s case may take years.
Her anger centres on the Government not heeding the Irish Medicines Board’s advice.
“In 2009, the Irish Medicines Board told the Government that it wasn’t clinically tested enough. They didn’t listen, so I, and others, got the jab. The Government took on liability for GSK. GSK would not let it in unless the Government took indemnity for it. I’m saying to the Government now that it’s time that we were all compensated for the damage done to us.”
Mary is particularly angry about how young people’s lives may have been affected by this.
Attending a recent meeting of the support group, Mary saw many young people badly affected by narcolepsy and cataplexy.
“They got the vaccine as children and their lives have been scuppered. I was 56 when I got it but those are young people with lives before them and that’s where my sympathy goes. I would not go public just for me, it’s for the young people.”
Mary, whose husband died two years ago, has had to “reconstruct her life”, she says, and while those affected have had “goodwill” supports, some in the form of invalidity pension, medical card and companion travel pass, this doesn’t make up for what’s happened to them.
She believes that the Government will be slow to pay out.
“They took indemnity, though, and it’s time now to stop pussy footing around it. In other countries they have had tribunals where there was no admission of responsibility and they just paid out. I don’t understand why they just don’t do that here. Right now they are holding off.”
No one realises what it’s like to have narcolepsy and cataplexy, she says.
“I’d love just to give people a week of my life – those making decisions – and see how they would like it. From being a healthy woman to being brought down to this.”
Mary going public in Ireland about her condition recently has led to an invitation to go to Stanford University in the US.
“Scientists from there are doing a lot of research into it, so I will be giving blood samples after I go out there on 6 May as they are particularly interested in adults who may have developed narcolepsy and cataplexy as a result of Pandemrix.”
Mary acknowledges that vaccination programmes are very important but says that responsibility must be taken by the State when things go wrong. CL
• A swine flu pandemic was predicted in 2009. • Ireland – and other European countries – granted Pandemrix manufacturers, GSK, the full indemnity they insisted on when Pandemrix was fast-tracked in anticipation of a pandemic, with the individual states agreeing to foot the bill if any problems developed.• The vaccination programme began in autumn 2009 and stopped in March 2010 when the predicted pandemic didn’t happen.• In 2009, the Irish Medicines Board had queried the lack of data on such swine flu vaccines. • On March 28 2011 Pandemrix was recalled, with the HSE citing studies in Finland and Sweden which highlighted fears the vaccine could be linked with narcolepsy. • To date, the Government has contested compensation or support claims, insisting that there is no link between the vaccine and narcolepsy. • Law firms, however, say that international studies have shown a link.• The Department of Health’s chief medical officer said in 2012 that (using Pandemrix) “was the right decision at the time” and that it “was critical to get access to good vaccines at the time”. • Educational and health supports for children affected were put in place in 2009 but it was unclear then if monetary compensation would be offered.• SOUND (Sufferers of Unique Narcolepsy Disorder) believe that, while they accept the Government had the best of intentions in 2009, it has a moral duty to accept its duty of care.• The first case is set for October 2019.
Mary Minchin from Leighlinbridge was a busy woman pre-January 2010. A mother of four and suckler farming with her husband, John, she was very active in IFA circles, serving as IFA Carlow County secretary, for example. She was also working as a health care assistant for the HSE and the Irish Wheelchair Association.
This work meant driving from house to house to visit clients.
She got the swine flu jab in January 2010 having been advised, like everyone else in her profession, to do so in order to protect clients with serious health conditions from getting the virus.
“You felt like you should get the vaccine because you owed it to people with underlying conditions not to bring swine flu into the house,” she says.
All went well, she says, for a month or so after the Pandemrix vaccination on the 23 January 2010, but then she began to feel very tired.
STOPPING FOR NAPS IN THE CAR
“I found myself having to pull up and have a nap in the car when I was going from one house to another because I was that sleepy,” she says. “And I was falling asleep at work. I used to read the papers with one client and next thing I’d have nodded off. His wife would always ring to see if I’d got home okay as she was so concerned.”
Mary also found that she was becoming more forgetful and dropping things. Vivid dreams and hallucinations were another stress in her life.
“They were unreal. I’d be agitated for a long time after them,” she says.
Driving obviously became very dangerous, so she had to give it and work up within months.
Initially her doctor had diagnosed extreme fatigue and she had suspected multiple sclerosis herself but she knew it was something different when she started experiencing seizure-like cataplexy.
This is when she would fall and for several minutes could neither move nor talk although she was conscious of everything going on round her.
“It is muscle paralysis,” she says, “and is usually triggered by strong emotions like laughter or anger. I remember one day coming down a street in Carlow. I grabbed a lady and said: ‘Don’t let me fall.’ Down I went and I was on the ground for 20 minutes. I felt people were thinking ‘is she drunk or on drugs’.”
It is because people don’t understand what narcolepsy and cataplexy are like that she is bringing her story to the public, she says.
“Every time I say I have narcolepsy/cataplexy they say ‘what is that’?
NO LINK WITH VACCINE INITIALLY
Unlike some of those affected, Mary got an early diagnosis after presenting at the emergency department of a Dublin hospital in May 2010 following a cataplexy occurrence.
“The doctor hit it on the head – narcolepsy and cataplexy.”
While Mary knew, at that point, that she couldn’t drive or work anymore after that diagnosis, no link was made with the swine flu jab at the time.
She subsequently went on medication to help control the condition but it is never fully controlled, she says. To this day – nine years later – she still falls asleep about three times a day and the cataplexy occurs occasionally too.
STUDIES IN SCANDANAVIA SHOWED LINK
Watching the BBC news in August 2010 made her sit up in her chair, however.
“They were saying that in Finland and Sweden there had been a huge increase in narcolepsy and cataplexy after people got the swine flu jab, Pandemrix, especially in children. What had happened to me then made sense. I’d had none of these things before I got the jab and now here I was unable to work.”
The sudden falling asleep and the disturbed sleep weren’t the worst aspects for Mary, however. Instead it was the cataplexy.
“You could be out and you’d just go down – fall on the pavement or wherever. There is terrible uncertainty and worry in it and you’re a while trying to get yourself back after them too.”
Farm involvement limited
Mary now has many limitations in her life due to her conditions. The biggest one is not being able to drive.
“I was doing 40,000 miles a year but now if I want to go somewhere I’m depending on a lift, so my independence is gone.”
Her involvement on the farm is more limited now, too.
“I was the one who’d be taking down numbers when they’d be reading cattle. I remember one day cattle were in the crush and I was taking down the numbers and it was just one big squiggle on the page. All my husband and son could do was look at one another. I used to be good at that stuff and doing the farm books.”
FIRST CASE IN COURTS IN OCTOBER
Mary is sad and angry about what has happened to her and, like many others in the support group SOUND (Sufferers of Unique Narcolepsy Disorder), is suing the State, the Minister for Health and GlaxoSmithKline (GSK), the makers of the vaccine.
The first case will hit Irish courts on the 8 October. Mary’s case may take years.
Her anger centres on the Government not heeding the Irish Medicines Board’s advice.
“In 2009, the Irish Medicines Board told the Government that it wasn’t clinically tested enough. They didn’t listen, so I, and others, got the jab. The Government took on liability for GSK. GSK would not let it in unless the Government took indemnity for it. I’m saying to the Government now that it’s time that we were all compensated for the damage done to us.”
Mary is particularly angry about how young people’s lives may have been affected by this.
Attending a recent meeting of the support group, Mary saw many young people badly affected by narcolepsy and cataplexy.
“They got the vaccine as children and their lives have been scuppered. I was 56 when I got it but those are young people with lives before them and that’s where my sympathy goes. I would not go public just for me, it’s for the young people.”
Mary, whose husband died two years ago, has had to “reconstruct her life”, she says, and while those affected have had “goodwill” supports, some in the form of invalidity pension, medical card and companion travel pass, this doesn’t make up for what’s happened to them.
She believes that the Government will be slow to pay out.
“They took indemnity, though, and it’s time now to stop pussy footing around it. In other countries they have had tribunals where there was no admission of responsibility and they just paid out. I don’t understand why they just don’t do that here. Right now they are holding off.”
No one realises what it’s like to have narcolepsy and cataplexy, she says.
“I’d love just to give people a week of my life – those making decisions – and see how they would like it. From being a healthy woman to being brought down to this.”
Mary going public in Ireland about her condition recently has led to an invitation to go to Stanford University in the US.
“Scientists from there are doing a lot of research into it, so I will be giving blood samples after I go out there on 6 May as they are particularly interested in adults who may have developed narcolepsy and cataplexy as a result of Pandemrix.”
Mary acknowledges that vaccination programmes are very important but says that responsibility must be taken by the State when things go wrong. CL
• A swine flu pandemic was predicted in 2009. • Ireland – and other European countries – granted Pandemrix manufacturers, GSK, the full indemnity they insisted on when Pandemrix was fast-tracked in anticipation of a pandemic, with the individual states agreeing to foot the bill if any problems developed.• The vaccination programme began in autumn 2009 and stopped in March 2010 when the predicted pandemic didn’t happen.• In 2009, the Irish Medicines Board had queried the lack of data on such swine flu vaccines. • On March 28 2011 Pandemrix was recalled, with the HSE citing studies in Finland and Sweden which highlighted fears the vaccine could be linked with narcolepsy. • To date, the Government has contested compensation or support claims, insisting that there is no link between the vaccine and narcolepsy. • Law firms, however, say that international studies have shown a link.• The Department of Health’s chief medical officer said in 2012 that (using Pandemrix) “was the right decision at the time” and that it “was critical to get access to good vaccines at the time”. • Educational and health supports for children affected were put in place in 2009 but it was unclear then if monetary compensation would be offered.• SOUND (Sufferers of Unique Narcolepsy Disorder) believe that, while they accept the Government had the best of intentions in 2009, it has a moral duty to accept its duty of care.• The first case is set for October 2019. 
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