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Is Guillain-Barré syndrome a reason to fear the swine flu vaccine?

I covered this information in a comment, but it bears repeating.

Because it’s such a succinct summary, I’m lifting this from Harriet Hall’s article on Science Based Medicine:

The 1976 swine flu. In February 1976 a strain of H1N1 influenza similar to the 1918 strain killed a soldier at Fort Dix. Officials feared a pandemic and over-reacted. In actuality, the H1N1 strain was limited to the Fort Dix area and quickly died out, and another related strain only persisted until March. Nevertheless, a swine flu vaccine was developed and was given to 48,000,000 Americans, 22% of the population. The vaccination program was stopped in December after 532 cases of paralysis from Guillain-Barré syndrome were linked to the vaccine and 25 people died. It had been a false alarm, and more people died of the vaccine than of the disease. The risk of getting Guillain-Barré from the vaccine was approximately 1 in 100,000.

No one can predict whether this flu virus will be as bad as 1918 or as mild as 1976. 302 people have already died from the current H1N1 strain in the US, and there have been 2184 deaths worldwide. That’s already more than the 25 who died of Guillain-Barré syndrome in 1976. Even in its mild form, swine flu ‘09 seems more severe than swine flu ‘76 (which killed one person). And while it’s true that many people who decide not to vaccinate will probably be fine, whether or not they get the flu, making the decision to vaccinate is about risk vs. benefit.

Looking at numbers, the risk of complications from the flu–especially should this strain take a turn and become more severe–outweighs than the risk of side effects from a vaccination.

Here’s some more from Harriet Hall:

Claim: The threat of Guillain-Barré is a reason to reject vaccines.

Fact: No one understands what causes Guillain-Barré syndrome, but it can develop after an infection, surgery or vaccination. It is possible that people who develop GBS after vaccination might also have developed GBS after natural exposure to the disease. “From both the societal and individual perspectives, the risk of GBS after a flu shot pales in comparison to the risk of serious adverse events if infected with the influenza virus: 60 to 70 cases of GBS vs. 20,000 deaths from influenza. Keeping things on the same scale, people over 65 years of age can choose from a risk of 1 case of GBS per million people or 10,000 cases of hospitalization and 1500 deaths due to influenza.”

Bottom line, it’s not 1976. This strain of the H1N1 virus has already lasted longer than the 1976 strain and has already killed enough people to be a credible threat. The numbers say vaccination is a better bet. From a New York Times article:

Had there been a swine flu epidemic in 1976, the number of lives saved by a vaccine would have dwarfed the small number of cases of Guillain-Barré. But in 1976, the vaccine was given even though the epidemic did not materialize.

“The math is overwhelmingly in favor of vaccine if there’s an epidemic,” said Dr. Harvey V. Fineberg, the president of the Institute of Medicine and co-author of “The Epidemic That Never Was,” a book about the 1976 episode. “It’s in the absence of disease that this rare effect looms large.”

There is a lot of fearmongering going around on the Internets about this vaccine. Dr. Mercola headlines a post with, “Warning: Swine Flu Shot Linked to Killer Nerve Disease.” The post is a bit conspiracy theory minded. He claims:

A warning that the swine flu vaccine has been linked to a deadly nerve disease has been sent by the UK Government to senior neurologists in a confidential letter.

The letter from the Health Protection Agency, the official body that oversees public health, was leaked to The Daily Mail, leading to demands to know why the information has not been given to the public before the vaccination of millions of people, including children, begins.

It tells the neurologists that they must be alert for an increase in a brain disorder called Guillain-Barre Syndrome (GBS), which could be triggered by the vaccine. GBS attacks the lining of the nerves, causing paralysis and inability to breathe, and can be fatal.

My first question is whether this leaked letter exists. But even if it does, a letter telling neurologists to be on the alert for a possible side effect doesn’t seem like a cover-up. There’s a lot of emotional manipulation in this post, like the phrase, “including millions of children.” (Oh God, not the children!) Meanwhile, Dr. Mercola doesn’t give good numbers to help readers make an educated decision about the 2009 swine flu. He paints in broad strokes, but he’s not giving accurate information. One can’t assume that because neurologists might have been warned to look out for a possible, rare side effect that there is an actual link between this 2009 vaccine and Guillain-Barré, but that’s what this dire “warning” claims. The post makes a leap of logic over a pretty wide chasm with no facts. It implies that those in power know they are about to inject millions of innocent kids with a killer vaccine. The actual risks of the flu vs. the risk of this vaccine (which is not the 1976 vaccine) are not mentioned.

Get the shot or don’t get the shot, but make the decision based on a reasonable assessment of risk vs. benefit, not a campaign of fear.

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19 Comments »

  1. Sean Said,

    September 30, 2009 @ 2:56 am

    This week see’s trials of the new swine flu vaccines on children in the UK

    Swine Flu

  2. toby lee Said,

    September 30, 2009 @ 4:30 am

    There is substantial data suggesting that keeping your vitamin D levels up will protect you from H1N1 (Swine Flu) and colds and flu in general.
    Take a look at these two articles:

    August 2009-Vitamin D3 deficiency and its role in influenza
    http://archive.constantcontact.com/fs026/1102452079631/archive/1102685428884.html

    Sept 2009-More on Vitamin D3 and influenza
    http://archive.constantcontact.com/fs026/1102452079631/archive/1102728693089.html

    If the links don’t work, go to http://www.vitaminD3world.com and look under “In the News” This site offers a good newsletter on Vitamin D updates and recently launched a new micropill formulation of Vitamin D.

  3. Michael Said,

    September 30, 2009 @ 6:49 am

    Great post. You’ve nailed the rational behind getting the vaccine and brought out the dangerous emotional manipulations of the anti-vax crowd.

    That said, I take a small quibble with part of your post. You said:

    “No one can predict whether this flu virus will be as bad as 1918 or as mild as 1976.”

    Actually, yes we can. At least as far as the 1976 outbreak is concerned. Clearly the 2009 outbreak is no where near as mild as 1976. As you pointed out later, in 1976 it killed one soldier at Fort Dix. But the 2009 outbreak has killed (in your numbers) 302 in the US alone. That makes the 2009 outbreak far more severe than the 1976 outbreak.

    Furthermore, the outbreak is far more widespread. There simply is no way to compare the two.

    Now, comparing it to 1918 is much harder. We’ll have to wait and see if this outbreak is as bad as that one. But a few things to remember, the 1918 outbreak seemed mild at first, with a few people getting mildly sick (and a few dying) in the off-flu season. Then, in the next flu season the sickness was worse and far more widespread. And it was the third “outbreak” (It was all one outbreak, perhaps wave is a better word) was when it was truly awful.

    Anyway, it really is a quibble. I got your point, and a good point it was! Get the vaccine if you are in one of the high risk groups. Unless your medical condition has something that specifically indicates you shouldn’t, the benefit far outweighs the risk.

  4. Julie Said,

    September 30, 2009 @ 7:54 am

    Thanks, Michael, I actually sort of wanted to say that this outbreak is already more severe, but I didn’t want to be alarmist, and I thought the numbers would speak for themselves. But your quibble is welcome.

  5. Julie Said,

    September 30, 2009 @ 8:18 am

    Toby,

    I have to do some research on vitamin D, but I would caution readers that those links you just posted are marketing sites.

  6. jessiemarion Said,

    September 30, 2009 @ 8:47 am

    Great post Julie, it helps clear up that issue for me.

  7. Phyllis Bregman Said,

    September 30, 2009 @ 12:29 pm

    Thnks, Julie. Getting the vaccine is a no-brainer for me, and I hope your post clears up some of the vacillation for others. Good article.

  8. toby lee Said,

    October 7, 2009 @ 4:55 am

    Judy, Everyone should do some research on vitamin D. Apart from the potential impact on flu, it is now two years since the Canadian Cancer Society started recommending that everyone take vitmain D to prevent cancer. This came about after the Lappe placebo controlled trial in post menopausal women was published showing basically what all the epidemiolgy studies had predicted. Amazing how still so few know about this. That site vitaminD3world may be offering vitamin D but the quality of the data presented is good and just about every statement is linked to a publication.

  9. Grandma Said,

    October 9, 2009 @ 9:06 am

    Thank you, Julie for a relevant a factual post.

    As a retired nurse, it continues to amaze me that many people feel that the CDC or the FDA…even the pharmaceutical industry is somehow conspiring to keep the American public in the dark when it comes to homeopathic treatment options.

    I know there are profit driven scare tactics that are used by some groups to increase confusion, and increase there own revenues, which is why one must make rational choices regarding there own health care

    Since H1N1 has been determined to be pandemic, although, as stated in a previous post, no one can predict how severe the disease will be. When you are not vaccinated, you not only endanger yourself, but others you come into contact with. There will be a finite amount of vaccine available, and it will be offered to the high risk population first, and then will be offered to the general population. And, of course, not everyone will get the vaccine, even when it is available to them.

    Vitamin D is essential to your body’s well being…if you can’t get enough in your diet, supplements should be considered. But, it won’t stop you from getting sick, any more then Vitamin C will prevent harmful pathogens from attacking you. Your body will only take what it can use from these vitamins, and excrete the rest.

    Maintaining a healthy diet coupled with exercise, and FREQUENT hand washing will serve you better then relying on vitamins to protect you against influenza and other types of infections.

  10. Jaffrey Said,

    October 12, 2009 @ 9:31 am

    Hi Julie,

    Thank You for posting this. There is so much controversy over this Flu shot this year, schools closing, and just everywhere it is being discussed. My particular feelings on this are based on the fact that my step-father died in 2002 from GBS, 2 months after having a flu shot. That is when I became aware that it really can happen. I feel it is like a lottery , and we can all weigh the odds/chances.
    I am also grateful to the post comment here about including more vitamin D in our lives. On the Doctor Oz Show last week, he also addresses the issue that we all need more vitamin D in our lives and how simple it is to get it. It is free and comes from the sun in the middle of the day for 10 minutes. I will not be gettin a flu shot. I am guessing that the nasal version would be more of an option to negate the possibility of GBS.

    Thanks again for posting this.

    Injoy,

    Jaffrey

  11. Kristine Said,

    October 12, 2009 @ 1:27 pm

    I just found this site and am still looking around. Forgive me if this question has been addressed. I’m wondering about the best protection for my son who has epilepsy.

    What would you do????

    My son was dx’d with “shuddering attacks” as an infant. Basically, immature nervous system. He would crawl and freeze and shake for about 6-8 seconds. He would not respond to his name, even in a scolding tone. He was VERY twitchy when sleeping. Neuro dx’d as not seizures based upon the fact that it affected both sides of his body, but he did not lose consciousness. We were told that he’d outgow it by 18 mths. Last episode witnessed at 17 mths.

    At his 3 yr well check, he was fit as a fiddle. He got HepB and flu shots. Two minutes later, he started rhythmic shaking and fell out. He hit his head and started crying. Two more similar episodes that week. Then another 2 weeks later and then another about a month later. Then, a few weeks after that, he was walking into the family room, stopped, starred, his eyes rolled back, his head slumped to the left and he slumped to the floor.

    We took him back to the neuro and they did an EEG and sedated MRI. Both were negative. We went about life. My son was at this point, known for falling a lot and losing his place while in the middle of sentences (saying, “what was I talking about”).

    Days before tunring 5, we woke to him having a full, tonic-clonic seizure. He had another at the same time (5am), one month later. He then had another EEG and this one showed seizure activity. He was put on Depakote. He then had a 24 hr EEG that showed abnormal brain wave spikes every 5-10 seconds. Once up to the full does of Depakote, his falling and speech interruptions stopped.

    He went 18 mths w/o a TC seizure and then had 2 within 2 weeks, this past July. They increased his Depakote dose. He’s had absense seizures in school and is highly inattentive.

    Now, here comes H1N1. Would you give vaccine with possible Gillain-Barre or other neuro effects or take chances with the virus…given his history? No doctor will advise me one way or the other. I’m scared.

    Thanks for thoughtful input!

    Kristine

  12. Julie Said,

    October 12, 2009 @ 5:59 pm

    No one here can give you advice about a specific medical case. You need to speak to a doctor.

  13. Kristine Said,

    October 13, 2009 @ 2:04 pm

    I realize that no one can give medical advice. And i won’t do whatever anyone says, but doctors give conflicting advice. The vaccine research is on healthy kids. I am a skeptic and a rational, pro vaccine mom, but I’d like to hear how other rational moms might weigh this decision, given all that they know and believe about vaccines.

  14. Julie Said,

    October 13, 2009 @ 3:18 pm

    It wouldn’t even be responsible for anyone writing here to weigh in. There’s so much specific medical history. I wouldn’t feel right advising you one way or the other. The numbers I dug up regarding the risk of GBS and the risks of H1N1 are pretty much all I have to offer. My point here was just to allay irrational fears about GBS which have been stoked by a lot of misinformation coming from the anti-vaccine camp. So I hope this article helps you to make your decision in that regard. I hope you find a doctor that can advise you so you feel comfortable with your decision. If you normally get the seasonal flu shot for your son, this vaccine is made about the same way, so everything I’m reading says the risk will not be any different than the risks associated with the seasonal flu vaccine.

    But I think the question you are really asking is whether a child with a history of epileptic seizures should get this vaccine. While I haven’t read anything saying no, I’m not a neurologist and I really don’t know if there are any risks associated with the flu shot for patients who have seizures.

  15. Jim C Said,

    October 14, 2009 @ 11:56 am

    I had Guillain-Barre Syndrome (GBS)when I was 15yrs I am now 58yrs. I completly recovered from it. Could I still get the flu shots?

  16. Grandma Said,

    October 14, 2009 @ 12:51 pm

    Kristen,

    I hope that you can locate a pediatric neurologist with whom you feel comfortable. This is crucial for your child’s treatment, and there are several different, even conflicting treatment options in this type of scenario.

    Treatment of seizure disorders must be on a case by case basis. I know you want to make the best decisions for your son’s health care. Finding a pediatrician, and a pediatric neurologist who can guide you through these kinds of decisions (such as vaccines) will be the best possible, and most rational course of action.

    Keep advocating for your child, and attempt to locate physicians that share your parenting choices, and will take the time to explain their advise to you. What may be a correct treatment for one child with this disorder could easily be contraindicated in another child with similar symptoms and history.

  17. Julie Said,

    October 14, 2009 @ 2:13 pm

    Jim,

    I think you need to ask your physician about that. I do think I’ve seen warnings for people who’ve previously had GBS to ask their doctors before getting the flu shot.

  18. Janice Said,

    October 15, 2009 @ 12:39 pm

    I have been told back in 1987 to probably not have a Flu shot ever again. This advice was from a neurologist I had seen for a reaction of severe neuritis or mild GBS syndrome. It was never truly diagnosed for sure, but it was pretty bad. I had weakness from legs extending to abdomen, chest and head. The headaches were incredible. This happened 2 mos. after I had a flu shot. I am a nurse in an ICU unit and also have asthma. My dilemma is do I take a chance and get a flu shot or not. I will most likely be exposed to the H1N1 from my patients. I have been told by my employer I should not take one. I do have a drug prescription on hold for Tamiflu just in case. I must take it in 48 hrs. at onset of any flu symptoms. I have to decide if it is a cold or flu and take Tamiflu. I’ve used Tamiflu once and it kept me safe from one bout of flu. The Tamiflu can protect you up to 6-8 weeks after taking it for the flu. I would still like to have the flu shot but need to discuss my option with my doctor. Our hospital is mass vaccinating with H1N1 and regular flu shots this week.

  19. Some Notes on Dr. Feder’s Essay About H1N1 Vaccinations Said,

    November 21, 2009 @ 10:23 am

    [...] Barre syndrome for various reasons.   You might get it from actually getting the flu.   I posted about this recently.    The risk of getting GBS from a flue shot is about one in a [...]

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