Oct 30 2009

The Dystonia Flu-Shot Case

Robert E. Bartholomew is a social scientist who specializes in mass delusions. He describes them here, in an article he wrote for the NESS, but also in a longer article here for the Skeptical Inquirer and in his several books. About mass delusions he writes:

A collective delusion is the term most commonly used by social scientists to describe the relatively spontaneous spread of false beliefs that do not occur in an organized, institutionalized or ritualistic fashion.

Today, we live in a connected virtual community, and YouTube, Twitter, Facebook, and blogs, in addition to traditional media, are the medium through which community panic and delusions spread.

At this time there are two slow panics spreading through the community – fear of the H1N1 “swine” flu pandemic, and fear of the vaccine to prevent H1N1 flu. Regarding the pandemic itself  – this is a real threat, it is just not known at this time how severe it will turn out to be. So far it is looking like another seasonal flu in severity, but with some different features, such as a greater tendency to severely affect otherwise healthy individuals.

The panic over the vaccine, however, is entirely manufactured, primarily by dedicated conspiracy theorists and anti-vaccinationists, and then aided by irresponsible media. There have been two stories in particular about alleged severe reactions following vaccines recently, one dealing with the HPV vaccine and the recent cased of what is being called dystonia following the seasonal flu vaccine. The young girl who died within hours of getting the HPV vaccine was found to have a heart defect, and her death had nothing to do with the vaccine, so that story was rather short-lived.

The new case making the rounds, however, appears to have some legs. It is getting international news attention, and I am being flooded with e-mail requests to analyze the case.

This is the story of Desiree Jennings, who is a 28 year old cheerleader who was apparently healthy until August when she received the seasonal flu vaccine. Ten days later she developed a severe respiratory illness, probably the flu, requiring hospitalization. She then developed  an apparent neurological reaction in which she has difficulty speaking and walking, with involuntary muscle contractions and contortions. Her symptoms (including speech) are relieved, however, by walking backwards or by running. She also seems to have attacks of muscle contortions.

News reports are presenting her story as a rare vaccine reaction. Take a look at the video of her movements on this news report also.

This case, of course, has been immediately picked up by the anti-vaccine crowd. Generation Rescue, Jenny McCarthy’s anti-vaccine organization, wasted no time in exploiting this poor girl for their own agenda. She is now the latest poster child in the war against vaccines.

The media is largely covered in fail over their reporting of this case. They failed to ask basic journalistic questions – was the illness Jennings suffered from due to the vaccine,  was it confirmed as the flu, and was it the strain from the vaccine, was the incubation period compatible with a vaccine-induced flu, did she get the live-virus version of the vaccine, does she really have dystonia, has that diagnosis been verified, are their other possibilities, and what is the plausibility that it was caused by the vaccine?

None of these basic questions are addressed in the news reports – instead we are given an emotional report of a “one in a million” (a figure apparently pulled out of someone’s butt) vaccine reaction. Her episodes are called “seizures” when they are almost certainly not seizures. Her condition has also been called permanent and irreversible – without any justification.

Normally I try to refrain from making medical diagnoses in public cases – but Jennings has now inserted herself in to the anti-vaccine movement, and is using her own case to “warn about the dangers of vaccines.” To mitigate the damage to public health brought about by misinformation in this case, I think it is necessary to provide some expert opinion.

The movements and symptoms that Ms. Jennings displays on the public videos I have seen (linked to above) are not compatible with the diagnosis of dystonia, or any other movement disorder. Dystonia is one type of involuntary contraction of muscles. It can be reduced or exacerbated by certain movements or positions, and there are “task specific” dystonia, such as writer’s cramp, that come out only with certain activity. Jennings does not display the type of movements that are consistent with dystonia. Her speech and movement are, however, very suggestive of a psychogenic disorder.

This also seems to be the consensus opinion of experts who have viewed this case. The Dystonia Medical Research Foundation had this to say about the case:

Because of the concern of individuals with dystonia as to whether or not to get a flu shot because of this reported case, we have sought the opinion of dystonia experts on this case. Based on the footage that has been shared with the public, it is their unanimous consensus that this case does not appear to be dystonia.

The one news report that I saw that actually consulted an expert for their opinion was Fox News. Leigh Vinocur, and emergency room physician, was interviewed and relayed the opinion that the neurologists she consulted were of the opinion that Jennings’ symptoms were consistent with a psychogenic disorder. In other words – her symptoms are not neurological, they are psychological. This does not mean she has any insight or voluntary control over her symptoms – they are involuntary and “real” – just not neurological in origin. Symptoms such as this are not uncommon reactions to emotional stress in some individuals. Given the evidence presented, I think this is a reasonable opinion.

Dr. Vinocur also points out that there are no reported cases of true dystonia resulting from the flu vaccine – this is not a known or established vaccine reaction.

Here is another interview on Fox with a movement disorder specialist, Dr. Stephen Grill, who concurs that (based upon the video, and not personal examination) Ms. Jennings does not have true dystonia but psychogenic dystonia.

It is therefore highly unlikely that whatever Jennings is suffering from now had anything to do with the flu vaccine she received in August. Unfortunately, this is not stopping irresponsible news coverage or exploitation by anti-vaccinationists. Further, Jennings is now in the hands of the Generation Rescue anti-vaccine quacks. I predict that they will be able to “cure” her, because psychogenic disorders can and do spontaneously resolve. They will then claim victory for their quackery in curing a (non-existent) vaccine injury.

In addition to the public harm, Ms. Jennings herself is likely to be harmed by the media attention her case is garnering. She likely could benefit from proper medical attention of her condition. But now she is publicly invested in her disorder, and is likely to accept care from those with their own anti-vaccine agenda. It is difficult enough dealing with psychogenic disorders without international public attention and controversy.

The medical community is always careful to point out that there are very rare reactions to vaccines. No one is claiming that they are 100% safe – no medical intervention is. But severe reactions are very rare. Meanwhile, about 36,000 people die each year in the US alone from the seasonal flu. That figure is likely to be higher this year, as seasonal strains are combined with the H1N1 strain to form a particularly bad flu season. We are fortunate that there are vaccines both for the seasonal flu and the H1N1 flu, which is particularly well targeted because we know the strain.

Other measures for minimizing spread of the flu are, as always, also important – wash your hands, stay home if you are ill, and avoid contact with those with respiratory symptoms. But the vaccines are likely to significantly reduce the spread and severity of the flu. And yet, fear-mongering and misinformation, such as with the Jennings case, are scaring people away from the vaccines, without good cause.

75 responses so far

75 thoughts on “The Dystonia Flu-Shot Case”

  1. agashem says:

    Thank you for addressing this, as I physiotherapist (physical therapist) I was highly suspicious but since I am not a neurologist I wasn’t 100% certain. I was quite suspicious as she could run normally, I have never seen a patient with a movement disorder who could do things rapidly but not slowly or slower, it doesn’t make any sense. Thanks again.

  2. jamesllitwin says:

    Thank you Steve for this article I was wondering how to respond to this video on facebook. This person had already convinced one of thier friends to not to get any flu shots within an hour of posting the video.

    Hopefully they will read your article and understand how fear-mongering and misinformation is not science.

  3. Eternally Learning says:


    Thanks for addressing this. I have had multiple people tell me that this case is the main reason why they are not getting a H1N1 shot. Personally, without knowing the facts you laid out above, I still didn’t think that their reasoning held any water. Let’s say that it could be proven that her symptoms were caused directly by the vaccine, there are still many more stories on the air about people suffering from the flu itself. If I have to choose between a 1 in a million chance of my children looking like Ms. Jennings and a 1 in 500,000 (pulling that out of my butt btw. I’m not sure what the actual odds are, but I’d wager they’re less than 1 in a million) of my children looking like those kids I’ve seen in the hospitals on the news, I think it only makes sense to go with the least likely scenario. Do you happen to know the actual odds of someone suffering serious complications from H1N1?

  4. Kimbo Jones says:

    I am an OT – like the PT above, I also found it strange that she had an easier time moving with activities that required more, not less, tone and speed. But good to hear the explanation from a neurologist. Thanks.

  5. chigh says:

    Thank you for posting this!

    I was having a discussion yesterday about the H1N1 vaccine and ended up getting no where. According to my friend, ALL doctors are a part of the “big pharma” conspiracy and the CDC is hiding all information about the potential side effects of the vaccine. However, he’s all about “big placebo.” *sigh*

  6. Watcher says:

    Sad that she had to jump to conclusions. It’s like Lebron James saying that he thought he got the flu from getting vaccinated a few days before. Hypotheses based on misconceptions are doomed to fail and lead you down the wrong path. Too bad high profile people aren’t willing to find this information out before they speak.

  7. Draal says:

    Wait, Fox News provided the best news coverage of this incident?

  8. Blair T says:

    I live in British Columbia where the H1N1 vaccine has just been rolled out this week.

    Last week the news media reported many stories about people being concerned about the safety of the vaccine (before the vaccine was available), giving the impression that many (maybe half) the population was skeptical about receiving the vaccine.

    This week the news reports that people are lining up for hours in order to get the vaccine as soon as possible and there are complaints that there are not enough doses. (they are prioritizing the most vulnerable now with a full roll out to the general public around Nov 15). That is, people are voting with their feet on this issue.

    In short – there are multiple confirmed cases of people dying from H1N1 (I think around 100 total in Canada) and unless and until there are multiple confirmed serious reactions to the vaccine I think the fear of death (especially when each case is reported in the media) will overcome vaguer fears of reactions to vaccines.

  9. superdave says:

    Thank you for writing about this Dr. Novella, but could you go into more detail about what exactly is the tipoff that this is not a true dystonia?

  10. Neuroskeptic says:

    Thanks for this important post. What’s most troubling about this is that the antivaccers so quickly moved in & capitalized on the case – and the way in which they’ve effectively set themselves up as the “experts” :

    “They are extremely helpful,” Desiree said. “They have a lot of doctors that deal with vaccine interactions, and they have sent us so many other stories similar to mine.”

    Leaving the real experts in the dust…

  11. meatyphil says:

    Thanks so much for this post, Steve. I’ve spoken with *so* many people who tell me that this case is the reason they’re not going to get the flu shot or get their kids the shot. The “journalism” has just been appalling. Things like this are what really motivated me (and probably most of us) to become a skeptical activist in the first place.

    Excellent work!

  12. kristindanielle says:

    Sorry I dont believe what I’ve read in this post. It just seems as though this “doctor” wants to keep people getting that damn vaccine. My daughter got the flu shot last year and was sick for damn near a month not including get croup right after. SO I believe its bullshit.
    If you really want to do something to “help” try actually checking Desiree out for yourself. Because apparently there’s something seriously wrong. And blaming it on psychological problem instead of giving it the proper care it deserves is PATHETIC! That girl clearly has a limiting physical condition. Her condition has already been diagnosed as neurological dystonia so WHO ARE YOU to say otherwise.
    And DAMN all the rest of you people who are “thanking” him for “clearing” this up.

  13. krazy9000 says:

    Awesome post (as everyone of your posts are)! I submitted it to digg.. more people need to read your blog (and its intelligent comments) daily! It’d make the world a much better place. Keep up the awesome work.

  14. HHC says:

    As the movement disorder has been ruled out on this post, may I hypothesize a psychogenic problem originating from physical trauma to the vagina and uterus. The damage would impact the sacrum and lumbar area and the aberrant signals would affect the speech area of the brain. I would hope that this cheerleader has a thorough examination by a gynecologist and internist. As she is making progress with speech and general movement, I would say that her prognosis to recover is more than fair and probably good.

  15. charlie says:

    Thanks for covering this Steve. I was hearing about this all over, it was great to get the science based perspective. Great article as always.

  16. kristin – it’s easy to dismiss opinions you don’t like. But here are the facts.

    First, it is silly to say that I should be “checking” Desiree for myself- that would be a violation of privacy.

    I acknowledged she has a genuine disorder that requires medical attention – it’s just not dystonia.

    We don’t know what the doctors who saw her really think – again, because of privacy.

    But she has made herself into a public spectacle to be exploited by the anti-vaccine movement, so commenting on the information she has put in the public domain is fair game.

    I am a neurologist. I treat dystonia. Dystonia is a movement disorder which is mostly diagnosed by simply looking at how the patient moves, and a video is a decent level of evidence for this. Also – as I have linked to – every other dystonia expert who has viewed the video and commented in public agrees that Desiree does not have dystonia.

    Regarding HHC’s comment – I assume you are being sarcastic. Again – I am not diagnosing Desiree or recommending a treatment. I am simply commenting on the videos made public (as others have). The diagnosis of psychogenic movement disorder is not simply an assumption or diagnosis of exclusion. There are features that are diagnostic of this condition, which is well known and described.

  17. JRC says:

    Kristin, it seems that you implying that a psychological disorder is not worthy of “proper care”, which is completely ignorant. This is still a serious condition, it just isn’t neurological.

    I’m very happy to have found this article, thank you.

  18. pious fraud says:

    The link to Desiree’s own page on Genation Rescue’s website is not working. Does this mean they took it down already after learning she probably has a psychogenic disorder? That would be strange, disconfrming expert opinions haven’t ever affected them before. Are you kidding me??!! It’s too good to miss out on: A cheerleader, with a harrowing story of recovery & redemption, from being victimized by PERVERTED SCIENCE & GREED! Madison Ave. could turn her into a prophet I tell ya – I’m suprised Oprah hasn’t given Desiree her own talk show yet… I’d stay home from work to watch it.

    Seriously though, Kristin, you are barking up the wrong tree here. People here have children and families that are threatened too – either by the actual H1N1 and/or perceived threats of the vaccine – so an emotional response in regards to safety in general is completely natural. Still, the scientific question of wether or not the flu vaccine is both safe & effective must be unemotionally addressed. When this is done, all the evidence shows that yes indeed vaccines are safe & effective, and yes indeed, the antivaccs are stirring up misinformation that is having deadly consequneces.

  19. Tom Nielsen says:

    Sometimes I wonder if that the majority of mothers out there, has fallen pray to the anti-vax movement, especially when reading all these blogposts about the anti-vaccination wackos.

    But then I stumbled over this site, where a mother had started a thread on vaccination, and it seems that the vast majority of them, fortunately vaccinate their children…somewhat to schedule.


    Especially one post caught my attention:

    “Our family also vaccinates on schedule with CDC guidelines and recommendations. As a mom of 2 autistic boys, I DO NOT believe that their vaccs had anything to do with their disorder. Daddy is also ASD as is a wide berth of his family. I also have 2 other sons (not with the daddy of the younger two) that were vacc on schedule and have no neurological deficits. I truly believe that the research backs the need/recommendation for vaccines. Oh, and my 5yo got chicken pox after the vacc, it was horrible, but I was told that it would have been much worse if he had not gotten the vacc. (he was 3).”

    I really respect that even after having two children with autism, she still trusts the research, and haven’t let herself get caught up in the fearmongering.

  20. Tom Nielsen says:

    Ok I can see the thread is only for those who do vaccinate, but still nice to hear from some sane mothers doing the right thing.

  21. chionactis says:

    Thank you for another great blog post, Dr. Novella. Science is an open book, and peer reviewed journals like JAMA allow anyone with the inclination to learn about research that has been done on the topic of vaccination.

    It is understandable that parents would be worried by stories like this, and would be desperate for answers when they have to decide whether or not their child should be vaccinated. And unfortunately they don’t all have the time to spend sorting out the truth from the fiction. But it is a little disturbing to read about parents who put so much stock in a celebrity like Jenny McCarthy. I guess I can see how emotion might override critical thinking.

    I imagine those parents must know in the back of their minds that there is a gap between what Jenny and handley say on the one hand, and what years of careful research say on the other. The thing that is most disturbing, of course, is that those parents who are being misled (probably not purposely) are endangering their children by not getting them vaccinated. It is very frustrating to see, so thank you for helping to fill that gap. Your insight is needed and very much appreciated.

  22. daedalus2u says:

    I tried to find any page on generation rescue that mentions Ms. Jennings and can’t. Google searches show pages, but a search of the site shows no pages. They must have taken it down. The google cache doesn’t show anything either (cache date 10/30).

    A search of the whole web shows a thousand hits for Desiree Jennings plus generation rescue, many of them talking about a special page that GR set up for her and also mentioning the ability to donate $$$ to GR.

    I think they took it down when it became obvious that it was psychogenic. But they don’t want to acknowledge that there can be psychogenic responses to vaccines, so they are disingenuously just pretending that it didn’t happen.

  23. kait says:

    It’s dangerous to mix politics and science. That’s my reaction after reading this blog I came across via a Google search on Desiree. If you’ve jumped on the let’s bash foxnews bandwagon, then your opinion is discredited. Every news network has an agenda. I’ve found a few networks covering this case. I’m a healthy female in my 30s. I’ve never gotten a flu shot and I never will. I cannot trust doctors, the anti-vaccine crowd or the media. What do I do? I trust my instincts. I’d rather risk being sick for a week than contract some mysterious disability that most likely links to the last thing I had injected in my body.

  24. Right – Generation Rescue took down their page. I will probably have some more information on this soon.

  25. kait – instincts are notoriously unreliable. Following their instincts – most people will not make optimal risk vs benefit decisions. You are a good example – your risk of dying from the flu is far greater than contracting a rare reaction to the vaccine.

    Taking the population as a whole – chance of dying from the flu each year is about 1 in 10,000 (probably a bit higher this year). The chance of a serious reaction to the flu vaccine is about 1 in 1 million – 100 times less.

    Humans have terrible instincts for numbers – that is part of the reason why we need science and statistics.

  26. superdave says:

    Kait, I can’t tell you what to do, but if you are wondering who to trust, look not only at what people are saying but the evidence they provide.

  27. Doctor Evidence says:

    A mind-virus may help the spread of a biological virus.
    Isn’t that strange?

  28. mindme says:

    ||Taking the population as a whole – chance of dying from the flu each year is about 1 in 10,000 (probably a bit higher this year). The chance of a serious reaction to the flu vaccine is about 1 in 1 million – 100 times less.||

    I was looking for these figures myself in the literature/CDC and had a hard time finding the stats. Could you point me to where these stats come from. Thanks.

  29. kait says:

    Highly skeptical of the 1 in 10,000 stat doing 5 minutes of research on the net. I’m not a fan of being categorized as part of the masses – when I say I trust my instincts I’m considering my medical history, demographics, allergies, etc. Knowing my body and immune system, I’m content with my decision. I’m not pushing my decision on anyone else. Desiree’s story is a good one. Too many people are oblivious to side effects with any drug or vaccine. If it’s creating fear in the public, don’t worry it’s being balanced by the 24/7 barrage of swine flu “you’re going to die” hype.

  30. SquirrelElite says:


    I did about 5 minutes of research on the net and here’s what I found.


    I went to the CDC because we the taxpayers are paying them to try to find these things out and keep track of them. For some reason, I find them more believable than someone whose “job” is persuading you to buy their latest book or some unproven “cure” they have concocted.

    Here is their answer:

    How many people die from seasonal flu each year in the United States?

    The number of seasonal influenza-associated (i.e., seasonal flu-related) deaths varies from year to year because flu seasons often fluctuate in length and severity. CDC estimated that about 36,000 people died of seasonal flu-related causes each year, on average, during the 1990s in the United States. This figure includes people dying from complications of seasonal flu. This estimate came from a 2003 study published in the Journal of the American Medical Association (JAMA), which looked at the 1990-91 through the 1998-99 flu seasons [10]. Statistical modeling was used to estimate how many flu-related deaths occurred among people whose underlying cause of death on their death certificate was listed as a respiratory or circulatory disease. During these years, the number of estimated deaths ranged from 17,000 to 52,000.

    In 2009, CDC published additional estimates of seasonal flu-related deaths comparing different methods, including the methods used in the 2003 JAMA study. The seasons studied included the 1993-94 through the 2002-03 flu seasons [9]. Results from this study showed that during this time period, 36,171 flu-related deaths occurred per year, on average.


    In other words, when you add people who die directly from the flu with people who get something else triggered by getting the flu like pneumonia or a heart attack (the doctors who frequent this site can give you a more accurate description, I’m sure), you get an average in the U.S. alone of 36,171 people who die every year from the regular seasonal flu varieties. When you take that number and divide by the number currently projected by the U.S. census bureau of 307,834,430 you get an average of 1.175 out of every 10,000 people who will die of the flu.

    And, if you look at the annual patterns for the seasonal flu, that hasn’t even started yet. Those numbers really take off about December and don’t peak till March or April.

    A lot of people are already dying from the flu (or taking very long and expensive trips to the ICU) and it’s practically all the new H1N1 version that just showed up last spring. The absolute number may not look like much but we’re already ahead of schedule and the numbers are still growing.

    Now, we’ve been giving flu shots to millions of people every year for about 30 years and Desiree Jennings is the first person ever to get a response like this to a flu shot. (If that’s in fact what triggered it.) That sounds like 1 in a billion odds to me.

    So, I worry a lot more about being one of those 36171 this year plus the H1N1 number (whatever that turns out to be) than about being one of the 4 or 5 people in the world who may get some weird new response that’s never been seen.

    I voted with my feet and my wife and I got our seasonal flu shots a couple weeks ago and I plan to get an H1N1 shot as soon as they are available for people in my age range and we take care of the people (like our kids) who are most vulnerable to it.

  31. Fifi says:

    I find it problematic that H1N1 and the HPV vaccine are being talked about in the same breath for a number of reasons. I’m not anti-vaccine and intend to get the H1N1 flu shot when it becomes available to the general public in December where I live (if I haven’t already had the flu by then and been tested to identify it as H1N1). The HPV vaccine is a very different matter, as are some of the controversies surrounding it. Even Dr Harper, one of the researchers who conducted trials for Merck and GSK, has come out against the way Gardasil is being marketed and it’s pretty clear that Merck has put a lot of lobbying muscle into trying to get it made mandatory. It’s this kind of lobbying and overt greed by Merck that, quite rightly, makes people suspicious of Merck’s motives and the vaccine’s safety.

    I found this to be a very good and balanced article on the subject.


  32. Fifi says:

    Incidentally, Dr Harper seems to be the only person in the article that’s actually thinking about the reality of a woman’s gynecological health over her lifetime (and being realistic about the vaccine over the long term). Not coincidentally, or so it seems to me since the women doctors and scientists I know tend to be of the same mind vis a vis Gardasil, Dr Harper is a woman.

  33. Fifi says:

    Also, just a side note about “scaring people away” from getting vaccinated against H1N1. In Canada it seems to be quite the opposite is happening and clinics have been unable to handle the demand. At the moment only at risk populations can get vaccinated so we’ll see how many people are still lining up a month from now when it’s available to the general public.

  34. mindme says:

    In Ontario, they were kind of caught with their pants down. Lots of surveys said a majority of Canadians weren’t planning to get the vaccine. And then a healthy 13 year old hockey player died near Toronto of the flu. And then there was a panic. Health officials assumed people would turn out for the vaccine like they normally turn out for the annual flu shot, spread out over a couple months. Not all in the first week.

    Kait, the facts are pretty undeniable. I’m not sure why you keep over ruling them with your intuition. If you had a baby, would you trust your intuition about your ability to hold onto your child in a crash or listen to the sober dry facts about the risks and get a car seat?

    Ultimately a vaccine is less about you dying and more about who you might unknowingly infect with the flu if you get it. It’s about building a ring of immunity around the most vulnerable. A certain degree of altruism is required. Surely you can understand your role in protecting the most vulnerable in society? I can.

  35. Fifi says:

    mindme – Very true regarding flu vaccines and yet another reason why lumping in HPV vaccines with them is an unfortunate thing to do.

  36. nileguy says:

    Hi Steve,
    Love the blog and the SGU.
    In canada, the new concern is what is written in the makers leaflets. Specifically:

    “Pre-clinical Safety Data
    Non-clinical data reveal no special hazard for humans based on conventional studies of
    safety pharmacology, acute and repeated dose toxicity, local tolerance, female fertility,
    embryo-fetal and postnatal toxicity up to the end of the lactation period.
    Two reproductive studies were conducted with AS03-adjuvanted H5N1 antigen and
    evaluated the effect on embryo-fetal and peri-and post-natal development in rats,
    following intramuscular administration. Although no definite conclusion could be
    reached, regarding a possible relation to treatment with the H5N1 vaccine and/or the
    adjuvant AS03, and other findings were considered normal, the following observations
    deserve to be mentioned: In the first study, there was an increased incidence of fetal
    malformations with markedly medially thickened/kinked ribs and bent scapula as well as
    an increased incidence of dilated ureter and delayed neurobehavioral maturation. In the
    second study, there was an increased incidence of post-implantation
    loss, and the fetal variation of dilated ureter. Not all findings were observed in both
    studies, and hence the toxicological significance is uncertain.

    The full leaflet is below. Just wanted your wisdom on this.
    Thanks Steve!


  37. Fifi says:

    Nileguy – You might be interested to know that the reason why the vaccines have been delayed in Canada is because of production of an adjuvant-free vaccine for pregnant women (this takes longer and has slowed down production of the regular vaccine). The question regarding vaccination becomes on of risks vs benefits – particularly since some pregnant women seem to be particularly vulnerable to this particular flu (see the second article linked below, which also speculates about the role a IgG2 deficiency may play in sever cases)

    “Canada has ordered 1.8 million doses of unadjuvanted swine flu vaccine for pregnant women and children under the age of three, Canada’s chief public health officer said Friday.

    Adjuvants are substances added to vaccines to boost a person’s immune response to the shots. While the adjuvant to be used in Canada’s H1N1 vaccine — an oil-in-water emulsion — is similar to one that has been used in Europe with seasonal flu shots and other vaccines, Dr. David Butler-Jones said there’s not yet enough clinical data on adjuvanted vaccines in pregnant women and children under three.

    Those groups will have the option of using an unadjuvanted vaccine, he said.”


    flu and pregnancy link…


  38. nileguy says:

    Thanks! good info.

  39. Fifi says:

    nileguy – You’re very welcome. I look forward to reading Steve’s response to your query but thought it was important to be clear that pregnant women in Canada are being offered adjuvant-free vaccine and why flu vaccines are recommended for pregnant women. Overall, I think most of the Canadian and provincial governments have handled this matter quite well (including erring on the side of safety by not rolling out the regular flu vaccine at the same time when questions arose). For non-Canadian readers, it’s provincial governments that manage vaccination programs and not our federal government.

  40. Calli Arcale says:


    Highly skeptical of the 1 in 10,000 stat doing 5 minutes of research on the net. I’m not a fan of being categorized as part of the masses – when I say I trust my instincts I’m considering my medical history, demographics, allergies, etc.

    But your demographics relate directly to you as part of the masses. Of course you’re an individual — but you really are also part of the masses. That’s actually what puts you at risk of contracting an infectious disease.

    Your body and your immune system are great at combating illness. But if they don’t know what the pathogen looks like, it’ll have a chance to get established before your body can get rid of it. Having a good immune system is vital to survival — but not always sufficient, and limiting yourself to what you know about *you* will not give you enough information to make an informed choice.

    Think about this: we know H1N1 influenza can kill healthy people. We know this because we have seen it do so. How can we predict the odds of it killing you? Well, we can infect you and see what happens, or we can extrapolate from what we know about the masses. Which do you prefer?

    If it’s creating fear in the public, don’t worry it’s being balanced by the 24/7 barrage of swine flu “you’re going to die” hype.

    Did you catch Jon Stewart’s “Daily Show” segment on 10/15, called “Doubtbreak 2009”? It was basically about what a hash the media is making of this, starting with all the scary reports about deaths, and then going into the scary reports about possible side effects of the vaccine, and winding up with scary reports about vaccine shortages. “What are you doing to us?! Is the vaccine a deadly poison, and will we run out?”

    That pretty much summed up how I feel about most of the media coverage, especially the TV news coverage. It seems to be settling down slightly locally, but the national news is still all “hey, let’s find something scary and report the hell out of it!”

    I’m not especially worried; these things seem to settle out just fine in the end. But it annoys me greatly that these journalists have so little journalistic integrity. Indeed, some of them do indeed see it as “balance” that they have swine flu fearmongering followed by flu vaccine fearmongering, but really what it is is drama. They’re trying to grab attention. It’s what they do.

  41. mikedx42 says:

    Hi, first time poster! Absolutely great article, and you hit on a lot of points I really liked. I’m an engineer, and as an almost-scientist (or at least a cause-and-effect-ist) the lack of logic here is killing me! One in a million would mean hundreds of documented cases of this!!

    I just wanted to mention that I, like most people, have a distrust of Fox News, but actually 3 months ago Fox was the only place I could go to get the facts about the H1N1 vaccine and the magnitude of the supposed GBS connection 1976. I know science and medicine shouldn’t be political, but when you have senators like Kerry and the late Kennedy giving speeches about the vaccine/autism connection, it’s sad state of affairs. It’s really pathetic that I have to go Fox News for the facts about vaccine news, especially since I always thought of the Democrats as the science party. Just my two cents!

  42. mmackay40 says:

    @ mindme @fifi and @ nileguy

    Another Canadian here. Fifi is right. Last Monday, surveys said many were NOT intending to get the H1N1 shot. On Tuesday a healthy teenage boy died. On Wednesday, Thursday, and Friday, clinics were overwhelmed.

    There also appears to be a shortage of vaccine this week, because the manufacture switched to make a version without adjuvent for pregnant women. (It will go back to making the regular version).

    @SquirrelElite — in looking at the Swine Flu consequences versus the seasonal flu, I found this graph from New Scientist worth more than a thousand words in pointing out that the Swine Flu is not like the seasonal flu:


  43. storkdok says:

    @Tom Nielson

    There are a lot of us mothers AND fathers of autistic children who haven’t fallen for the antivax pseudoscience. We have gotten on with our lives and don’t dwell on the subject.

    The thing that is most irritating is that when I meet people and we start getting to know each other and they find out my son is autistic, they immediately assume I am antivax.

    I am very grateful to the various sciencebloggers for taking on the autism antivax crowd. Many are just as nasty in real life as JB Handley.

  44. damzelfli says:

    My son has an autoimmune disorder directly related to a regular childhood vaccination. He was taken from a picture of health to an invalid with one jab. Rare? Yes. However, before you lash out at those hesitant to take vaccinations maybe you should listen to those who must live day in and day out with a horrible autoimmune disorder most definitively CAUSED by a vaccination. Immunizations are NOT completely safe and effective as YOUR agenda says they are. Just because it is rare and didn’t happen to you doesn’t mean you should just sweep legitimate concerns under the carpet.

    The thing that bothers me the most is the idea of “mandatory” shots, especially the childhood ones. What one puts in their body should be a matter of personal choice. If someone does not want to vaccinate their child or themselves, so be it. If you are one who chooses to be vaccinated, why do you fear someone who doesn’t? You’re immune right?

  45. damzelfli – You repeat some typical anti-vax strawmen in your post.

    No one is saying that vaccines are 100% safe. I have never said it – so you simply made that up as a straw man argument.

    What scientists and doctors say is that vaccines safety is very high and that the small risks are outweighed by the clear benefits. The risks are small – not zero. There are definitely rare reactions to vaccines. This is not to dismiss them at all – but neither can you dismiss all the children who die or are injured by vaccine preventable diseases.

    Risk vs benefit.

    Also – vaccines are not mandatory in this country. You only need them if you want to attend public school. This means to have to balance the right to refuse treatment with the right of other children not to be exposed to infectious diseases. Your decision affects others, so they should have some say.

    And, in any case, this is a social, legal, and ethical decision which is irrelevant to the science of vaccines.

    And you last statement is simply naive. While vaccines work, they are not 100%. There are also people who cannot get the vaccine due to underlying illness. Therefore, as a whole we rely upon herd immunity to protect most people. Vaccine refusers impair herd immunity and threaten everyone.

  46. weing says:


    Interesting. What is the autoimmune disorder?

  47. stephen says:


    Are you going to post my message, or not?

    Btw, the concept of “herd immunity” is hogwash. It assumes that vaccines actually reduce the chance of catching infectious diseases. I would like for you to show me ONE double-blind placebo-controlled study demonstrating this to be the case.

    As my earlier post shows, this is very likely anything BUT the case. The only people who are actually endangering the population are those who get vaccinated. After all, they are certain to have the disease-causing organism in their bodies, and unless their immune system is fully functional, vaccinated people will shed these viruses onto the rest of the public. Since it is well known that repeated vaccinations damage the immune system, the less likely vaccinated people will be to eradicate the viruses before they are transferred to others. Thus it becomes highly probable that the only way pandemics can ever arise is through mass vaccination, everything else (clean drinking water, sanitation, refrigerated food) being the same.

    I find it absolutely reprehensible that you have chosen to censor my message. Do you have any idea how many people are going to suffer and die as a result of your decision? Do you CARE? There is no excuse for any medical doctor not already knowing the information that I have presented. Your witholding this information from the public is doing them a very grave injustice.

  48. Stephen – I do not allow cutting and pasting of large amounts of text into the comments. That is generally considered to be troll behavior. Summarize your points an link to resources. Do not cut and paste.

    You are grossly misinformed about vaccines. Most vaccines today are not live virus, so you cannot shed virus from these vaccines. That is just absurd. Even with live virus vaccines – they are attenuated. They don’t cause infections. The immune system wipes them out with little shedding.

    Vaccines do not damage the immune system. Far from being “well known” that is anti-vax propaganda. Vaccines stimulate the immune system against the target organism. They strengthen the immune system.

    I am not withholding any information from the public, nor do I censor this blog (even though I have the right to). You triggered the spam filters with your spam.

    I read through your list of facts – they are all taken out of context or misinformation. Far from being withheld – they are being distributed by the anti-vax loons – and you could just link to a site with the info.

    For example, most of the references are to studies which show that most people who contract an illness in an outbreak are vaccinated. Well, that is because most people are vaccinated. But if you look at relative risk – the risk of getting the infection is far greater is you are not vaccinated.

    So you presented distorted partial info out of context. It is that kind of misinformation that will cause harm.

  49. stephen says:


    You allowed “SquirrelEliteon 01 Nov 2009 at 11:20 am” to copy a significant amount of text from the CDC website. It seems to me that you are being choosy about who gets to do that and who doesn’t.

    Perhaps you will allow me to post a link to the information I posted? If so, here it is:


    This is only one of hundreds of web pages I have encountered over the past 6 months, which document the dangers of vaccines. There are several other pages at the above site which everyone should read over.

    While it is true that most flu vaccines do not contain live viruses, Astro-Zeneca’s FluMist inhalable vaccine contains live H1N1 viruses, and a number of doctors are concerned that this will spark a much wider pandemic from virus shedding (see http://www.prisonplanet.com/doctors-concerned-flumist-vaccine-could-spread-live-h1n1-virus.html).

    Vaccines most definitely DO damage the immune system. Here is just one of many articles I could cite backing this up: http://www.hpakids.org/holistic-health/articles/83/1/Vaccines-amd-Immune-System-Damage.

    I deeply resent your referring to my original post as “spam”. Spam is generally regarded as annoying, unwanted messages. Perhaps you regard my original post as annoying or unwanted, as it conflicts with your own opinion, but I have to question whether others reading this blog would feel the same way.

    I also resent your calling vaccination opponents “loons”. I can cite thousands of studies that depict serious dangers associated with vaccines. Here is just one link containing several hundred: http://www.nccn.net/~wwithin/vaccine.htm.

    I haven’t even touched on the subject of vaccine adjuvants, such as mercury, aluminum, and squalene, which have been clearly linked to neurotoxicity and serious auto-immune disorders such as Guillain-Barre, MS, and ALS. The public needs to be educated these very serious life-threatening diseases, almost all of which are occur shortly after vaccination. You are not doing the public any service by witholding this information.

    Your characterization of Desiree Jennings illness as “psychological” is absolutely one of the most shameful things I’ve ever read in my life. Psychologically disturbed people do not suffer convulsions upon hearing noises – they clearly have an organic brain disorder. Is this how the medical establishment intends to deal with the thousands of people who are permanently injured by vaccines every year? Tell them it’s all in their head?

  50. Stephen – regarding the comments. I do not pick and choose. I am one guy with a day job, and my ability to monitor comments here is limited.

    Your post triggered the spam filters. That’s it.

    Regarding your Google research – you are missing the point that there are ideologically dedicated anti-vaccine groups that are well funded and tireless. They are spreading misinformation through the internet. So simply because you can find information online that questions vaccine safety or effectiveness does not make it true.

    The sites you link to and the information you convey is all very misleading, or simply untrue.

    Scientists and physicians who can access and interpret the primary literature have poured over every issue relating to vaccines, and the claims made against them are simply not valid.

    I have already written about GBS and squalene – you are simply grossly misinformed. You need some humility – to consider the possibility you might be wrong. You are going off with fury and fervor because you have been misinformed by ideologues. The science simply does not support your position.

    And beware the casual assumption of moral superiority, or that everyone who disagrees with you is evil. That is the path to fanaticism.

    Regarding the psychogenic diagnosis – read my post from today. I am a neurologist – I take it you are not. I have an intimate familiarity with what the brain and mind can do. It is complex. You cannot get a reasonable appreciation of this from Google U. For example, what Jennings is displaying on the news videos are absolutely 100% not convulsions.

  51. weing says:

    “Since it is well known that repeated vaccinations damage the immune system, the less likely vaccinated people will be to eradicate the viruses before they are transferred to others.”

    WTF? Yeah, well known to cranks and the ignorant.

  52. Calli Arcale says:

    Your characterization of Desiree Jennings illness as “psychological” is absolutely one of the most shameful things I’ve ever read in my life. Psychologically disturbed people do not suffer convulsions upon hearing noises – they clearly have an organic brain disorder.

    So you would deny the suffering of those with psychogenic symptoms, merely because you think they only count if there’s an organic component driving it? When I have a depressive episode, I become lethargic. I have pain in my back which does not respond to any medication. I can’t sleep. I eat very little. (Contrariwise, when I’m just stressed, I nibble constantly. When I’m actually depressed, I can’t be bothered.) There is brain chemistry involved, but it’s on a feedback loop, and the mind is absolutely a part of it rather than merely a victim of it.

    The mind is more powerful than we tend to realize. Yet oddly, our society seems more comfortable with the notion of using the mind to heal the body than the notion that the mind can harm the body. Perhaps it is because the former reinforces the notion of an all-powerful will, while the latter requires acknowledging that we are not truly in full control of ourselves. We just think we are.

  53. Calli,

    That is a great point – I will definitely steal that from you. If you think the mind can heal the body, it should not be a surprise that the mind can harm the body. I just think in both cases we are talking about functional healing or harming and not pathological – except possibly for the physiological damage done by chronic stress.

  54. sunflower__81 says:

    I think a lot of people just want something or someone to blame when bad things happen. I was just looking for some solid information on the H1N1 vaccine when I came accross this. Some friends of mine had seen the Dystonia Girl video and were not going to get the vaccine because of it. I thought it was ridiculous. The scary thing is a lot of people see these videos and because the girl is being interviewed by a “journalist” they take it as fact and do not question it.

    This is off topic a bit by I recently gave birth to a son in June who died one week later. He was born with Hypoplastic Left Heart Syndrome and many other physical defects. Plenty of genetic testing has revealed nothing. I have come to accept the fact that we will likely never know what caused this. (Apparently this is not easy to do.) Perhaps it was something environmental or something I was exposed to. Or perhaps one egg or one sperm mutated. I don’t know and I’m not looking for the answer. I have come across other people in similar situations that are blaming the doctors for the child’s death when the doctors are only trying to help. They have an us against them type of attitude.

    The point I am trying to make is that people seem to want to have someone or something to blame when things go wrong. Maybe that’s a way to direct their anger and grief and put their energy into something. Some people also believe that doctors are not there to help us but have other motives. I do not share this belief. Anyway, a bit off topic but just my two cents.

  55. paulgreen says:

    I have not read all comments but the obvious one is that this could be someone who plans to sue for millions of dollars and who is malingering. This was not mentioned in the article. Perhpas this diagnosis is taboo.

    Instead, reference was made to the symptoms not being neurological but being “psychological”. It was immediately stated (with no evidence) that the non-neurological symtpoms are not conscious and not voluntary.

    Based on what evidence?

    Thorough symptom validity testing by an expert neuropsychologist is needed in cases like this. Such testing can often take the guesswork out of deciding whether symptoms are voluntary or not. Otherwise the default option is to assume involuntary symptom production, no matter how bizzare and self serving are the symptoms.

  56. paul – to clarify, you cannot know what is in her mind, how “deliberate” her presentation is. My point is that her presentation is psychological, not neurological. This includes the spectrum of insight from complete to nil.

    But further, my impression (purely impression, no objective evidence) is that her presentation looks psychogenic (lack of insight) as opposed to malingering (full insight). That is just my clinical impression.

    Further, I tend to give patients the benefit of the doubt, and will not make the accusation of malingering without evidence.

  57. Scott Carnegie says:

    Steve, you said

    “The chance of a serious reaction to the flu vaccine is about 1 in 1 million – 100 times less. ”

    Health Canada’s website says..


    In any immunization campaign, from regular childhood vaccines to seasonal flu shots, the average reported rate of serious adverse events is about one for every 100,000 doses of vaccine distributed.

    Why the descrepancy?

  58. Scott – there are different ways to estimate risk – do you accept all reports, or only confirmed cases, and where do you draw the line for serious. In one study of 250,000 people getting the seasonal flu vaccine there were no serious adverse events.

    I could not find one generally accepted figure. I gave an order-of-magnitude estimate from various sources. I think the 1 in 100,000 figure is high, and seems to reflect unconfirmed reports.

    The CDC discusses why such reporting systems need to be interpreted with caution.

  59. outeast says:

    I think in any case that evaluating the risk is a very difficult matter. One thing that skews the subjective calculation is that not everyone will even be exposed to the flu (as a simple function of chance) and that of those that are, most will not contract it – meaning that they will never actually have a ticket in the ‘severe effects’ lottery. So being vaccinated feels like taking a real risk when you may never even have been ‘destined’ to face the risk that it is designed to avoid.

    Then there are questions of how likely an individual is to suffer severe effects from flu and from innoculation. This is one place where media coverage of cases like this is particularly difficult: we get the impression that the vaccine risks are as likely to hit the young and fit as the frail, whereas we ‘know’ that if we are young and fit we are at low risk from flu.

    Of course, the risk calculation is also going to change with the vaccination rate: with greater herd vaccination comes a reduced risk of exposure to flu, thus lowering the risk to the individual of not getting vaccinated (while leaving the risk of severe effects from the vaccine unchanged).

    The above are all factors which genuinely make the numbers fuzzy in evaluating individual risk (we tend not to want to take personal risks for the greater good, so the prima facie case that vaccination is a matter of the greater good is irrelevant – tho true). Far more importantly, though, they play to our cognitive biases: we tend to regard risks that we take through positive actions far more negatively than ‘fated’ hazards.

  60. kihogan says:

    I am not for the vaccine, but for many reasons, not because of someitnhg I read online or a youtube video. I had a bad reaction 2 times to vaccines, first seasonal flu shot dr said would be good for me being in child care, crashed my immune system, i was sick the whole winter, and ended up in Er with breathing problems. Second seasonal flu shot, dr said first was a fluke and I must have been exposed to a virus before getting the shot and that was the cause of my system crash, again I ended up sick the entire time and another trip to the ER for breathing problems, where an ER dr told me I shouldnt get the shot anymore its hard on some peoples system and isnt effective anyway, many people that get the vaccine still get the flu. With in a few months, my thyroid that had previously been checked on a physical and was prefeclty fine, was way off, then Lupus and dermatomyositis hit. That was 7 years ago, I have refused the vaccine, and have been healthy through out the flu seasons. I take care of myself, eat well, natural foods, healthy foods, make sure i get plenty of sleep, wash properly, and exercise. The lupus and dermatomyositis is in remission, someithng that has the drs scratching their heads. I take NO meds at all, I suppliment with natural stuff, L-Trosine for my thyroid, vitmains made from whole foods not synthetic.
    My kids do not get vaccines, all of the kids in their class and the tecaher had the vaccine, all of the kids and the teacher were out sick in the past month, most with swine flu, My kids are the ONLY ones that have not been sick at all.
    Maybe…just maybe, there is actually something to the vaccine that isnt good for our bodies, and maybe…just maybe, letting our immune system do its job instead of adding a ton of chemicals to manipulate it and suppress it, could actually have people less sick.

  61. kihogan – While personal stories sound very compelling, they are anecdotal and therefore not reliable for drawing conclusions. There are many possibilities in your case, and we cannot make firm conclusions.

    Meanwhile – we have controlled data from thousands of subjects to see what the benefits and risks of vaccines are, and monitoring of millions of doses of vaccines.

    Vaccines do not suppress your immune system. They stimulate the immune system to be more effective against the specific target. They don’t “manipulate” it any more than any infection or exposure to a foreign substance does – vaccine just expose the immune system to proteins on a virus so that when later exposed to the virus it will have a more robust response.

    There is no evidence that any kind of diet or supplement can stave off the flu, or any infection (short of preventing nutritional deficiencies).

  62. cgodeke says:

    “Meanwhile – we have controlled data from thousands of subjects to see what the benefits and risks of vaccines are, and monitoring of millions of doses of vaccines.” – Steven Novella

    I think the most fitting quote for the anti-vaccine movement would be Joseph Stalin’s notorious “One death is a tragedy; one million is a statistic.”

  63. lunarbot says:

    All the work you’re doing on this case, on this blog and on SGU, is very important. Thanks!

  64. mjb7877 says:

    Does it matter what type of vaccine you get? Are there better ones out there? I heard Celvapan A is a new H1N1 swine flu vaccine that is going to be distributed soon..http://www.orderonlinedrugs.com/drug-news/2009/08/07/baxter-completes-celvapan-ah1n1-pandemic-vaccine/

    anyone heard about it?

  65. lolipop says:

    Does it matter what type of vaccine you get? Are there better ones out there? I heard Celvapan A is a new H1N1

  66. lookingleft says:

    I’m only an expert by experience, but this girl does not have any form of “true” dystonia I’ve ever seen. Thanks for doing your best to set the record straight!

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