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Narcolepsy "Epidemic"

(16 Posts)
Eloethan Thu 12-Mar-15 00:02:34

Did anyone watch this last night? I wasn't even aware that in 2010 there had been a narcolepsy "epidemic" affecting hundreds of young people from across Europe.

I thought it was a terribly sad programme and I hadn't realised how very debilitating this disorder is in its severest form. The lives of the three young people they looked at (including a boy of around 8-9) had been changed beyond recognition - instantly falling asleep up to 100 times a day and then experiencing sporadic sleep at night time, including terrifying nightmares. I felt so sorry for the young boy who sang in bed to try to keep awake because he was terrified of the nightmares.

It was eventually discovered that the cause was a swine flu vaccine that had been rushed on to the market. There is apparently no cure for this condition and the parents of the children said it would be virtually impossible for their children to be able to hold down a job.

Despite the catastrophic effect on all these children's lives and on their future prospects in terms of employment, relationships, etc., they had been turned down for compensation because they were adjudged to be "not disabled enough" - unbelievable.

rubylady Thu 12-Mar-15 05:21:36

Is that the French firm who decided who gets disability who was doing the compensation evaluation?

It was awful for them, poor things. Was it the same little boy who got up in the night and ate and said to camera how much he loved his family? He was so lovely.

A problem though for Glaxosmithkline, as I don't think the parents were letting the situation end there, were they?

thatbags Thu 12-Mar-15 07:03:22

If it has been proved that the drug company's product was the cause of the illness, surely they must have to compensate those affected? Unless, of course, they did everything right throughout the drug's trial stage, in which case it then seems more complicated to me. I didn't watch the programme. These are thoughts off the top of my head based on the information in the OP.

Anya Thu 12-Mar-15 08:07:11

I saw that programme and was horrified Eloethan These poor children will be severely affected for the rest of their lives. It's the same old, same old, as far as the drugs companies go, delay and denial. What is worse is the government refusing payment under the Vaccine Damaged compensation scheme.

It will of course happen eventually, as theses parents all.over Europe are united and will not let it go, but that will be years down the line.

What a lottery. Two of my grandchildren had this vaccination, it could easily have affected them like this.

Anya Thu 12-Mar-15 08:09:33

The company concerned is SmithGlaxoKline.

Anya Thu 12-Mar-15 08:12:10

Oops, it's as Ruby said GlaxoSmithKline.

Nelliemaggs Thu 12-Mar-15 09:16:05

I hope one of those faceless mandarins who concluded that these young people are not damaged enough to receive compensation for having their lives turned upside down watched the programme.
Narcolepsy with or without cataplexy, is a dreadful, irreversible, disease and depending where you live the NHS may, or may not, allow prescriptions for some of the few drugs which help sufferers to cope.

thatbags Thu 12-Mar-15 13:49:23

I'm sure it is a dreadful disease, but lots of people have dreadful diseases and disabilities and get no 'compensation'. The issue is whether there was/is any negligence or carelessness on the part of the drug producers if, and only if, the drug in question has been proved to have actually caused this narcolepsy epidemic.

Anya Thu 12-Mar-15 14:22:28

It appears the link has been accepted

As this report from 2013 appears to suggest. So why is compensation still being refused?

etheltbags1 Thu 12-Mar-15 14:34:58

Isn narcolpsy a name for sex with dead bodies

thatbags Thu 12-Mar-15 14:40:28

The last two prargraphs of that article are important, I think:

"The decision to recommend that children got this vaccine during the flu pandemic was based on evidence available at the time, along with the advice from the European Medicines Agency which approved its use.

"We keep all emerging evidence under review and that's why use of Pandemrix in those less than 20 years old was stopped in the UK in 2011."

Elegran Thu 12-Mar-15 15:01:18

You are thinking of necrophilia, Ethel (but I hope you are not considering it!)

Narcolepsy is falling asleep all the time - I suppose someone could have sex with a dead body in their sleep if their partner had died while they were not awake enough to notice, but I don't think the two things are connected grin

etheltbags1 Thu 12-Mar-15 15:11:49

sound yukky, not my thing, Im scared of dead bodies. Must try to remember, necrophilia is dead bodies and necrolepsy is a nerve disease.
ok, I learn something new everyday.

Elegran Thu 12-Mar-15 15:22:56

Ummmm - NARCOlepsy not NECROlepsy. I wonder what necrolepsy would mean? Will look it up.

Ahh! It means sudden death "Necrolepsy is a disorder marked by sudden, uncontrollable death, causing an individual to die at inappropriate times." All times are inappropriate, I would have thought, and all death is pretty uncontrollable.

And narcolepsy means sudden sleep - yes of course because narcotics send you to sleep. And epilepsy is "sudden recurring attacks of motor, sensory, or psychic malfunction with or without loss of consciousness or convulsive seizures"

As you say, we learn something new every day.
All a bit off the original topic, sorry.

Elegran Thu 12-Mar-15 15:45:26

Actually, dead bodies are not going to do anything to scare you - they can't hit you or say nasty things. The people they were have moved on. Less scary than living people, really.

etheltbags1 Thu 12-Mar-15 15:46:49

Been watching too many horror films, I guess.