Link between H1N1 flu and narcolepsy in children and adults: SLEEP 2013 Research Update Part I

by julie on June 10, 2013

At SLEEP 2013, I attended many fascinating sessions exploring the frontier of sleep science. I am not a scientist, but as a sleep and narcolepsy advocate, I will provide major takeaways from SLEEP 2013’s scientific program in upcoming blog posts.

At the meeting, new data from Finland, France and China further suggested a link between narcolepsy and H1N1 vaccination or infection. (In Finland and France – with Pandemrix vaccination. In China – with H1N1 infection without vaccination.) My first blog post on this topic is here.

Three new elements of research:

1. Now that more time has passed since the 2009-2010 H1N1 flu pandemic, there is a clearer picture of the spike in narcolepsy cases likely associated with the 2009-2010 winter peak season of H1N1 flu infection or vaccination. The increase came on quickly, and since 2010, has steadily decreased. Now, incidence rates have returned roughly to what they were before 2009 (thank goodness)! This spike indicates that something particular happened during this time period.

2. New data from Finland and France suggests a strong association between the Pandemrix H1N1 vaccine and narcolepsy in children and adults. Previous data focused on the increase of pediatric cases in Europe, but adult populations were likely affected too. This broadens the scope of the discussion.

3. Interestingly, while Finland, Denmark and Sweden experienced huge increases of cases in 2009/2010, other European countries did not – like Italy and the Netherlands. This variance may be, in part, due to vaccination standards varying from country to country. Where H1N1 vaccination was wide spread and systematic in Europe, increases in narcolepsy cases were observed.

REM Runner’s Look Ahead: The European H1N1 vaccine contained a strong ” adjuvant” to increase effectiveness, but this extra strength may have also caused a stronger immune system response in some individuals – leading to the development of narcolepsy. Although the American H1N1 vaccine did not contain the same strong adjuvant, I have heard of many narcolepsy cases developing within months of H1N1 vaccination in the U.S. Is my evidence anecdotal or statistically significant?

Also, Ireland was likely affected with many new narcolepsy  cases after the H1N1 flu vaccine, but I did not see Ireland’s data included in any presentations at SLEEP 2013.

While the H1N1 flu/narcolepsy connection saddens me, I hope this information continues to advance our understanding of the narcolepsy disease process. I hope we can prepare ourselves better in the future and minimize similar risks!

Further reading:
http://julieflygare.com/influenza-a-including-h1n1-infection-may-trigger-narcolepsy/
http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0033723
http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0033536
http://www.sciencedirect.com/science/article/pii/S0264410X12017823
http://onlinelibrary.wiley.com/doi/10.1002/ana.22587/full
http://www.hpa.org.uk/NewsCentre/NationalPressReleases/2013PressReleases/130227Pandemicflunarcolepsy/

 

Come back soon for more research updates from SLEEP 2013!

{ 15 comments… read them below or add one }

Makky's Mom June 10, 2013 at 3:11 pm

Here in Canada, the general population age 6 months to 65 yrs, excluding pregnant women, received the adjuvanted H1N1 vaccine (not Pandemrix, but a slightly altered version called Arepanrix also made by GSK) in the fall 2009. It strikes me as strange that Canada’s statistics on this are not being published (though they MUST have been studied!).

My daughter (4 yo at the time) received the adjuvated H1N1 vaccine in Oct 2009. She developed her first symptom of Narcolepsy 17 months later. Was it related? I don’t know, however, I do know that 10 weeks before her first narcolepsy symptom, she had a very nasty flu-like illness (had not been vaccinated in 2010) that might have been H1N1, followed 6 weeks later by a severe viral and bacterial pneumonia. It was 3 weeks after the pneumonia (and 10 weeks after the flu) that she had her first narcolepsy symptom. Because flu testing was never done, we will likely never know the true trigger of her narcolepsy but my bet is that it was the combination of the flu and pneumonia in the weeks preceeding her symptoms that were the culprits, not the vaccine the year before.

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julie June 10, 2013 at 3:37 pm

Hi Makky’s Mom – Thank you for your comment. To the best of my knowledge, I haven’t seen Canada’s statistics published yet either. This is curious as well, especially given the widespread vaccination. It sounds like your daughter’s immune system was compromised a few times, likely leading to the full symptom development. So challenging. Thanks for reading my post and advocating for your daughter! -Julie

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Mark Patterson, MD, PhD June 11, 2013 at 2:22 am

Hi,
At the meeting they mentioned that, as you noted, the pandemic H1N1 flu vaccine used in Canada was adjuvanted, but with MF59, not the AS03 used in the Pandemrix vaccine used in northern Europe. They also noted that there was not a spike in cases of narcolepsy in Canada as seen in Europe. As such, the Canadian vaccine did not seem to trigger a response. They also noted that most of the children who developed narcolepsy from the vaccine started having symptoms within 8 weeks of receiving the vaccine. I am sorry to hear about your daughter, but she probably did not get narcolepsy from the H1N1 vaccine. Good luck!

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Laura June 10, 2013 at 3:11 pm

Thanks for sharing the updates on this, Julie. I’ve been following this topic closely–my sleep symptoms started in fall 2010. I don’t remember exactly when I got the H1N1 vaccine–but it seems like it would have been sometime in spring/summer 2010. I know the connection they’ve demonstrated is only to the Pandermix vaccine, which wasn’t used in the U.S., but I still can’t help but wonder if there’s a connection in my case.

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julie June 10, 2013 at 3:39 pm

Hi Laura,
Thank you for reading and commenting here. I’m so glad you’ve been following this issue closely. I believe the flu vaccinations are generally given in the fall, in preparation for the winter flu season. I also wonder about a connection in the U.S.
Sending wakefulness your way,
Julie

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Elaine Armstrong June 10, 2013 at 7:14 pm

Hi Julie,
Such a pity Ireland’s data wasn’t mentioned. Thank you for keeping us all updated with your Sleep Research 2013.. Great work as always and we really appreciate you continued efforts for keeping us in the know !!
Your Irish friend,
Elaine

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Mairead Lawless June 11, 2013 at 5:48 am

http://www.dohc.ie/publications/Nat_Narcolespy_Study_SC_Report.html

This is the Irish report into the development of Narcolepsy after Vaccination with Pandemrix. The data is there but they don’t seem to want to talk about it!!
Sufferers of Unique Narcolepsy represents almost 60 children and adults affected. There were two new diagnoses last week. People (mostly children) are still coming forward!!!

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Paula June 11, 2013 at 5:06 pm

My 10yr old son was just diagnosed in May with Narcolepsy, his symptoms started this March (2013). Do you know of any good sites or info. for parents with kids with Narcolepsy? He was such an active kid was in every sport and excelled in Baseball also was top of his class and was in all advanced classes. This has turned our lives upside down. Thank you

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julie June 11, 2013 at 5:50 pm

Hi Paula, I’m so sorry to hear your young son was recently diagnosed. My website, book, blog and videos are leading resources for people with narcolepsy and their loved ones. I have listed addition organizations under “resources.” Visit Narcolepsy Network’s site for a listing of support groups across America.

Thank you for supporting your son.
All my best,
Julie

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Molly K July 28, 2013 at 7:20 pm

I had H1N1 n March 2010 and have had sleep issues ever since. I struggle with insomnia, daytime sleepiness which at times is impossible for me to resist sleep, and frequent sleep paralysis. I have gained weight and have almost no energy. If I get woken up suddenly I am usually confused. I used to be active and enjoyed going to the gym 3-4 times a week. I don’t know how to begin getting healthy again. This article has at the very least given me something to go off of.

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julie July 29, 2013 at 6:35 pm

Hi Molly, Im so sorry to hear you’ve struggled with these issues. I hope you can find answers soon – you deserve to feel better. I’m glad this article can help. Hang in there!

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Heather February 3, 2014 at 5:21 pm

Hi there,
Our son has narcolepsy. He was vaccinated against H1n1, in February 2010 (in Thailand where we were living, care of the French Embassy/Government) and first developed symptoms certainly by the end of December 2010 if not before, (but we are unable to pinpoint exactly when). Our son had the ‘Focetria’ vaccination which apparently had a different adjuvant than the ‘Pandemrix’ vaccination. At first we were told there is no connection between the Focetria vaccination and Narcolepsy. We were also told that symptoms would have occurred within 3 or 4 weeks of having had the vaccination. I’ve since read that it’s NOT that there is no CONNECTION between the Focetria vaccination and Narcolepsy – it’s simply that there is NO INVESTIGATION into any connection occurring. It would appear that the vast majority of people vaccinated in Europe (or by European governments) were given the Pandemrix. In France 80% had Pandemrix, only 20% had Focetria or other. In Sweden, Finland & England 100% had Pandemrix. We have since been told that symptoms have been found to develop 7 months or more after the vaccination, which correlates to the onslaught of our son’s symptoms. I’m wondering if anyone knows anything about the Focetria vaccination and the adjuvant used in it? I feel there could be a connection, but that as so few people had this particular vaccination it is unlikely any connection will be made let alone investigated! Is it possible (given the relatively low figures even with Pandemrix: 2-3 people per 100,000 having received the vaccination now have narcolepsy who otherwise wouldn’t) that my son is the only one or the only one of very, very few who could have narcolepsy caused by the Focetria vaccination??! Your thoughts please? Is a connection impossible or is it just simply that it is always going to be statistically too weak an argument to bring this to the authorities attention / to instigate any research into a connection? If anyone has anything to add or any knowledge regarding this subject, thank you for listening and sharing. Heather

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Anja June 11, 2014 at 1:32 am

My son has seizures where his head drops.
He was vaccinated with areprenrix with adjuvant during the ‘pandemic’
There were some behaviour issues but we didn’t notice much until he started chewing on the collar and sleeves of his shirts. This was fall 2012… 2 years after the h1n1 vaccine. Immediately following a really bad pneumonia. At the time I called it walking pnemonia….because I was in rough shape but still walking. My son had it as well. It lasted weeks. Cough, chest pain, dizziness, you could hear the lungs struggling.
His sleep, mood and personality seems to be affected. We are still trying to figure out the cause of his seizures. I think that it is auto immune.

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Martin Johnson August 11, 2014 at 4:32 pm

Re Comments by Mark Patterson MD PhD
According to The Vaccination Awareness Network…
“During the 2009-2010 pandemic influenza season many Canadians were injected with Arepanrix™ H1N1 vaccine with AS03 adjuvant, manufactured by GlaxoSmithKline; another GSK vaccine, Pandemrix™, a slightly different version of Arepanrix, was used in Europe; it also contained the very potent AS03 adjuvant.”
Also, “The Public Health Agency of Canada acknowledges only five reported vaccine-related cases of narcolepsy in children and three in adults. One study examining all narcolepsy and cataplexy cases diagnosed between January 2009 and December 2010 in the province of Quebec, the only Canadian jurisdiction which keeps records on narcolepsy, concluded: “Results are compatible with an excess risk of approximately one case per million vaccine doses but a confounding effect of the pandemic virus infection cannot be ruled out.” Edmonton paediatric sleep specialist, Dr Manisha Witmans usually treats only two narcoleptics per year. But within the last year and a half, she’s diagnosed ten cases and arranged tests for a few more. Not only that, but the cases are also more severe and more likely to suffer cataplexy as well. She knows of similar surges in Toronto and some US cities.” PLEASE NOTE: “Quebec, the only Canadian jurisdiction which keeps records on narcolepsy”
This becomes more interesting when we read “Also, since questions had arisen about the advisability of using both seasonal and pandemic vaccine, Quebec chose to not offer the seasonal influenza vaccine during the 2009-2010 influenza season. Considering these points, it’s an enigma just how GSK’s study will be “more robust” than those conducted in Europe using Pandemrix™!”
So, In summary, The Public Health Agency of Canada acknowledges only 5 case of vaccine narcolepsy in children and 3 in adults despite actual evidence from sleep specialists. The figures presumably come from Quebec, which is the only Canadian jurisdiction which keeps records on narcolepsy, yet this province chose not to offer the seasonal and pandemic vaccines. So not entirely surprising that the numbers of people who contracted narcolepsy and cataplexy are somewhat skewed.
As a 58 year old whose life and business have been devastated by contracting narcolepsy and cataplexy following vaccination in 2009 I would very much welcome some clarity from the Canadian Government and some form of recompense considering I can no longer leave my home by myself.
BTW Julie, keep up the great work…you give us all hope & inspiration!
Sincerely,
Martin Johnson
519 207 2005
mjsjohnson@rogers.com

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megan March 2, 2015 at 3:11 am

Hello my name is Megan I’m now 25 years old I was completely healthy most people thought I had ADHD growing up but in September 2013 I got my first flu shot I became sick. I then started to sleep a lot on my job and I was a hair dresser so I knew something was wrong not anything I was use to. Anyways a lot more started happening to me on Oct. 13 2013 I was hospitalized my cataplexy in one of the worse cases to come out of st. Louis Missouri it only took me three months to be dignosed. The reason I wrote to you was that I believe that the shot did this to me my doctors think I’m crazy but I had no signs before or anyone in my family and my doctor has no idea how this happen to me. I have joined tons of groups but no ones story is like mine. So I saw your page and was hoping for advice on this. Thank you megan

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