The Amazing Stubbornness of a Vaccine Anecdote

Yes, yes: my usual story. I spent way too much time on social media fighting with the anti-science crowd. It’s always a difficult balance, since I have a few projects with looming deadlines, yet I feel obligated to see a thread to its conclusion in the hope that someone on the fence will see my reasonable approach and be persuaded into the science camp. This is exactly what happened to me on the anti-vaccine rant Jim Carrey posted on Facebook in response to California’s new, tighter vaccine-exemption law.

I’m not going to discuss the safety or efficacy of vaccines here. That’s covered thoroughly by every skeptic website, including this one (or check out Skeptoid episode 55, which specifically addresses Carrey’s concern about mercury). Vaccines have about the best benefit-to-risk ratio of anything we do in life. What I am going to do is provide a narrative of our discourse as a way to document the usual path of these discussions.

What still amazes me is the ability for an anecdote to influence so many people. One particular comment thread got exceptionally long when a parent said her child started having seizures a couple of days after getting a set of vaccines. I started with an innocuous anecdote from Paul Offit to counter her anecdote. I’ve quoted it before, but just to refresh everyone’s memory:

Paul Offit likes to tell a story about how his wife, pediatrician Bonnie Offit, was about to give a child a vaccination when the kid was struck by a seizure. Had she given the injection a minute sooner, Paul Offit says, it would surely have appeared as though the vaccine had caused the seizure and probably no study in the world would have convinced the parent otherwise.

The mother’s response was that her doctors told her that her son was injured by the recent vaccines. I asked for the doctor’s information, as usually anti-vaccine people back down from their claims when they realize they’ve been caught in a lie. However, she happily provided the information for three doctors. I was able to find contact information for two of them. One, a pediatric neurologist, responded to my email within a couple of hours. I asked if he had ever diagnosed a vaccine injury and if he had recommend not getting vaccines as one of his patient’s parents had suggested. His response was that neither of those statements were true.

Please note: I did identify myself in my capacity as a Skeptoid contributor, and indicated I might write about it, and I therefore feel confident in disclosing this information. I didn’t ask him about a specific case as he wouldn’t be able to provide such confidential information. But it was clear he had never diagnosed a vaccine injury.

After relaying this exchange in the thread, the mother asked for proof. I had other things going on, so my response of a screenshot came a few hours later. The parent accused me of fabricating the email because of the time it took to produce the screenshot. I suggested that she contact the pediatric neurologist herself and offered that I could send her the header information if she felt it necessary. At this point she accused me of harassment and told me further contact with her child’s doctors would result in legal action. I’m not too worried about that, but I will respect her wishes as not to cause distress.

Another person commented that she was impressed with my knowledge but that I should back off, with the understanding that this parent and I would never come to an agreement and the intimation that perhaps I’m on a witch hunt against anti-vaccine parents. I agree that it is a difficult balance. I don’t blame this parent for being emotional. But that’s why I think the discourse is important, because they’re seeing things through a very skewed filter. That filter, paired with an emotional anecdote, can have a powerful influence on other people. I responded to the parent:

I am not saying you are lying. Science is well aware of how the brain constructs a narrative, thus memory is a difficult thing to trust, especially in emotional situations. Thus, science is more important in being a neutral observer, so we get things right. If vaccines were injuring hundreds of kids, we would want to reevaluate the risk versus benefit. The evidence shows the benefit outweighs risk many fold. This is important. Should we try to further reduce the risk of all medical procedures? Yes. Should we use anecdotes to make those decisions? No.

It is amazing what narratives we can construct. What happened next shows how powerful these anti-vaccine stories can be.

The parent said that for most people, vaccines do not cause any problems. But she said 5-10% experience seizures, brain damage, hearing loss, and developmental delays. This is very far from the truth. However, she hedged against counter information by saying she wouldn’t trust anything from the Centers for Disease Control because they are “for profit.”

I compared the odds of vaccine injury to the odds of winning the lottery. Both are extremely unlikely, yet a few dozen people do win large lottery jackpots every year. This is a bit of a cold comparison, but it is the only thing I can think of that has readily comparable odds. I also pointed out that claiming the CDC is for profit is outright false. When she tells people to “do their research” but not trust the CDC, she is automatically setting people on a path more likely to lead to nonsense websites. While the CDC isn’t the only source of good information on vaccines, she in a sense poisons the well in telling people not to trust the information there.

I asked for proof of this for-profit status. Her response was that they are listed on the website of Dun & Bradstreet, a firm that compiles and sells business data. I went to check it out. Here’s what I found:

wpid-wp-1436239631241.png

Her counter was that because the CDC is listed as “traded” it is automatically a for-profit company. I tried to explain how databases work and that the field was named poorly and is simply an AKA field. That didn’t work. So I went a little further. I pulled up a local parish Catholic church in New York that had an AKA. She ranted about the required donation for each of her kids to get baptized and how it made her believe the church is also for-profit.

I will digress just for a moment… I didn’t confront her on the need to “cure” her five children of the original sin. I resisted the temptation to use that as an example. Yes—pat me on the back!

So I pulled another example. There is a small, independent public radio station in northern Minnesota, which is very much non-profit. It is a great community asset, but even if it were a for-profit station it would certainly be far from a big money maker. I pointed out this station to her on the D&B site:

wpid-wp-1436239578061.png

This still wasn’t convincing.

She tried to further her “evidence” by stating the CDC owns a patent on Ebola and that is proof of a profit motive. She claimed that every time someone is treated for Ebola, they make millions of dollars. I pointed out there was no evidence for that in the HHS financial reports. Also, patents are not an uncommon practice for the CDC, as indicated in this International Business Times article:

Through the Centers for Disease Control and Prevention, the U.S. government often seeks patents on viruses and their genetic material in an effort to research the diseases safely. If awarded a patent, the agency would make the material available for public use, which private companies aren’t as likely to do.

“If a company patents it, they could limit access,” said Robert Stoll, former U.S. Patent and Trademark commissioner, currently an attorney at Drinker Biddle & Reath LLP. “[The government] could donate it to the public.”

And it’s happened before. The CDC holds a patent on the SARS virus from more than a decade ago.

“The whole purpose of the patent is to prevent folks from controlling the technology,” it said at the time. “This is being done to give the industry and other researchers reasonable access to the samples.”

She continued on with her insistence that the CDC is for-profit. She also pointed out some recent news about Dong Pyou Han, a university researcher who this parent claimed worked for the CDC. Han did not. He worked for a couple different universities, researching an HIV vaccine, and he falsified his results to gain more funding from the National Institute of Health. And guess what? He got caught. This isn’t evidence of a nefarious plot; it is evidence science works. Others couldn’t replicate the results, and suspicions rose. It didn’t have anything to do with the CDC. To me, this shows how the built-in error-checking mechanisms in science work. Whether accidental errors, bias, or purposeful manipulation, science finds a way to correct itself. This is why vaccines spend years in development: to be sure they are safe and effective.

My hope is that in carrying myself in a reasonable, logical manner, that someone unsure what to believe might avoid being swayed by an emotional anecdote, following the evidence instead. I want to make a habit of recording this discourse more often to serve as a learning tool for me, and hopefully provide resources for others trying to promote scientific literacy and reason.

I can’t imagine the heartache of watching your own child fall ill and have no idea if they will recover. It’s a difficult balance to play in trying to that her experience is uncommon, and even less likely to be because of a vaccine, and to simultaneously express deep compassion. Sometimes kids get sick. In fact, many more used to get sick, injured, or even die from things link the measles. (N.b.: in the 10 years before the measles vaccine, the disease averaged almost 500 deaths and 4,000+ cases of encephalitis each year, along with hearing loss and other permanent injuries.) It is possible this parent did have a child injured by a vaccine. But the cost to kids in the future of not vaccinating will be much higher.

About Eric Hall

My day job is teaching physics at the University of Minnesota, Rochester. I write about physics, other sciences, politics, education, and whatever else interests or concerns me. I am always working to be rational and reasonable, and I am always willing to improve my knowledge and change my mind when presented with new evidence.
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16 Responses to The Amazing Stubbornness of a Vaccine Anecdote

  1. Noah Dillon says:

    Who pays the millions of dollars in royalties to the CDC? If I owned a patent on paper cuts would office workers pay me for their injuries? Are only people who seek treatment paying the CDC? What kind of accounts payable department do they have that it can track down and invoice sick people in remote West African villages? The agent who negotiated such an amazing residuals deal that every person sick with Ebola has to pay millions of dollars: are they available for, like, record and movie deals, too? I have other questions. That sentence is a gold mine.

    • The fact that a patent exists does not mean that anyone is collecting residuals or royalties; in fact, the whole point of the CDC owning the patent and making it public is to PREVENT some private company from attempting to do just that (largely through enforcing royalties on research and/or treatments based on the patent).

  2. Stephanie Heringer says:

    Mr. Hall – I love reading your well-researched writing. You try very hard to counter with logic. I took Dr. Offit’s Vaccine History class a few months ago and he told that same anecdotal story about the seizure before getting the vaccine. I’m a registered nurse and do education on vaccines regularly with parents who are uninformed or misinformed so it is so helpful to me to have advocates for science like you and Dr. Offit. Thank you.

  3. Rosella A. Alm-Ahearn says:

    I have a son with autism, nearly 50 years old, born before the measles, mumps and rubella vaccines were available, and well before chicken pox vaccine was available. He did receive all of the other vaccinations, with no ill effects. When he was 7 he got the mumps. When he was 17 he got chicken pox, and so did I.

    The poor parents who want to believe ANYTHING that will offer surcease from the pain of having a child with a disability are completely understandable. But from one who has been led up too many garden paths, I appreciate your efforts to talk sense to the young ones. Continue to help them help their children learn the way that they can. Thanks for reason, logic and common sense.

  4. Ward McCreery says:

    What do you call a person who keeps spouting the same story over and over again? An ANECDOLT!!

  5. Swampwitch7 says:

    Confuscious say: you can’t argue with stupid.

  6. WhiteCrow says:

    Thank you for your information on why those who hear of those of us who have lost a child or now have a permanently injured child, or have been injured ourselves tell us that we only talking in anecdotes and so they don’t count for anything. I understand now why the damage that scientism causes is likely to change in the near future. The methods of argument are just that – argument in the contentious sense of the word rather than listening and hearing and responding to a person’s horrific experience. I see that those armed with this method of communicating will no doubt ‘win’ any interaction they enter into on this topic. Well, it is winning in cleverness, but it is not a win as a communicator. I offer a suggestion here in the hope that you can allow yourself to understand that most people in an everyday experience are not thinking like scientists and neither are they interested in winning when they tell you about their misfortune that they perceive occurred because they believed the scientific claims about safety being pretty much assured – it is this – try a little kindness instead of cleverness if you simply must interact with people who are telling their stories, Mr Hall. Telling the story is part of coming to terms with has happened to them or their loved ones. They feel betrayed by those who only value rationality as a result of their misfortune – after all, they believed that until disaster struck. When you go in with all rational guns loaded to shoot them down, you do no one a favour – not even yourself. What happens instead is that you have dehumanised the victim and yourself. A similar thing can be said about this persistent refrain about how vaccinations are so overwhelmingly safe for the majority and how tiny the minority are that are harmed. I do understand that it may be difficult to consider that no one really knows for sure who will be adversely affected next. There is no test to indicate this after all. And if one day it is yourself or a loved one of your own – would you want to be told how insignificant the rational people in the world think that the numbers of people who are harmed, such as yourself, are? As a scientist and a physics teacher, no doubt you are highly capable. As an emotionally intelligent person and a communicator, there is much to learn if you are not to do significant damage to too many in the population – and that is something that I believe can be said about most biological research scientists, pharmaceutical research scientists and physics scientists, even though the sciences are presented as the only legitimised knowledge on the planet. Knowledge is not only rational and all knowledge systems are worth learning, simply because we are all humans here. We are not only rational minds.

    • White crow
      Nice well thought out comment but there are several issues with the thought process you are following. Stories although emotionally compelling are not an effective way to base life and death medical decisions. No one is saying that everyone needs to only think logically. Only that the way to decide the effectiveness and safety of a medical treatment is to systematically carefully thoroughly observe the effectiveness and safety, using consistent logic to evaluate results. Only this method will produce and refine good medical care.
      Which part of that exactly do you disagree with? Do you disagree with being thorough? Using careful observation? Being systematic? Or using consistent logic? What other way would you recommend we evaluate medical treatments such as vaccines?
      I agree that no one wants anyone’s loved ones to be hurt. It is false premise however to say that medicine thinks the number of people injured by vaccines is small therefore we are willing to sacrifice them on the alter of the greater good. Truth is that if vaccines were withdrawn by even 20% of the population there would be massive suffering millions affected, children dead, brain damaged, paralyzed and disfigured. We are not sacrificing any minority. Vaccines are constantly reevaluated and adjusted in an attempt to minimize the minuscule chance that they might have injuries. Still despite all efforts there are some risks. The other option is massive death illness and injury. We don’t want anyone harmed. We simply have limits to what can be done there is no completely safe medical treatment. None. On the range of harm verses benefit scale, truth is that the benefit is massively out weighs the risks.
      Take my story for what it is worth I am an expert read all the research know all the problems intimately, yet my child is fully vaccinated. I know I am taking far less of risk giving him the vaccines than it is to put them in a car seat and take them to the super market. I also worry that the kids on the bus around them aren’t getting those vaccines and placing my child at far greater risk than they are in getting them.

  7. WhiteCrow says:

    Thank you for your information on why those who hear of those of us who have lost a child or now have a permanently injured child, or have been injured ourselves say that we only talking in anecdotes and so our sharing doesn’t count for anything – it is not ‘rational’. I understand now why the damage that scientism causes is likely to not change in the near future unless those treated this way speak up about the validity of using their own language system -science is not actually the only legitimate language system, despite what seems to be a desire by scientists for it to be so.
    The methods of argument used with that woman were arguing in the contentious sense of the word rather than listening and hearing and responding to a person’s horrific experience. I see that those armed with this method of communicating have a strong advantage to ‘win’ any interaction they enter into on this topic. For now. It is winning in cleverness, but it is not a win as a communicator.
    Most people living an everyday life and telling of their pain are not thinking like scientists and neither are they interested in winning – nor do they need to be made into ‘losers’ by being made wrong. Interacting to play winners and losers is highly inappropriate when someone is sharing the memory of something unpleasant. What they perceive occurred is that because they believed the scientific claims about safety being pretty much assured and they already feel like losers.

    I suggest you try a little kindness instead of cleverness if you simply must interact with people who are telling their stories, Mr Hall.
    Telling the story is part of coming to terms with has happened to them or their loved ones. They already feel betrayed by science – and then they feel betrayed by those who only value rationality despite their misfortune – after all, they believed that scientific rationality was a safe thing to do until it bit them.

    When you go in with all rational guns loaded to shoot them down, you do no one a favour – not even yourself. What happens instead is a dehumanising of the victim and yourself. A similar thing happens with this persistent refrain about how vaccinations are so overwhelmingly safe for the majority and how tiny the minority are that are harmed.
    It is a fact that no one really knows for sure who will be adversely affected by a vaccine next, regardless of their past problem free experiences. There is no test to indicate this after all. And if one day it is yourself or a loved one of your own -what kind of response would you want as you tell your story? Would you appreciate being told how insignificant the numbers of people who are harmed? Would it help you to be reminded that science says that vaccinations are very very very safe when you yourself are harmed or your child has died or you now will be unable to pursue a normal life because your child will need you there for a lifetime of care? And how does it feel then, to know that in the courts when you try to regain just some of what you spent on medical assistance on account of that injury that most will doubt that it had anything to do with the vaccination – that somehow you will have to prove it was related.
    And you are a scientist. It would be easier for you, wouldn’t it – do you get the power imbalance here? Is it registering?

    As a scientist and a physics teacher, no doubt you are highly capable. As an emotionally intelligent person and a communicator, if you are not to do significant damage to too many vulnerable people in the population, please, reconsider your methods of refuting the claims of those who are either injured already or fear that they will be through vaccination. The sciences are presented to the public as the only legitimised knowledge on the planet. Yet real knowledge is not only rational and all knowledge systems are worth learning or at least respecting. Simply because we are all humans here, not essentialist and not speaking the identical language and knowledge systems and not identical either genetically – so we do have different responses to the same medicines – and the experiences of none are insignificant. We are not all choosing to be only rational minds – and neither are we bound to do so, regardless of how much those who only speak science wish it were so. We work to understand your specialist language. Understand ours also. And you may learn something useful for science in the process – anything is possible.

    • Eric Hall says:

      What you suggest can also have a very negative effect.

      I can be compassionate to someone’s story. I cannot be passive to someone’s use of their emotions to justify the suffering of others. Let’s say my family member is killed in a car accident. That doesn’t justify prohibition of all cars because of that anomaly. I would hope I would be rational enough to understand the statistics of it and look for a scientific solution to reduce the number of accidents, not be irrational and advocate a ban on all cars.

      Or let’s say a family member is killed by an electric shock. I wouldn’t justify a ban on all electricity worldwide because it caused me emotional pain. I would look for a way to further reduce the chance of a deadly shock, but understand that electricity benefits many and saves many lives (AEDs for example).

      Expressing emotion when asking a scientific question puts us in danger of losing or slowing scientific progress. When someone wants to allow 4,000 kids a year to die of measles because they “have a feeling” that vaccines caused their child’s injury, they are advocating for others to suffer for a selfish reason. I try to be rational and reasonable in the hope they will see that and can separate their emotion from reason.

      I can empathize with “I’m sad.” I can’t empathize with “I’m sad so others should be forced to follow my irrational, emotional decision.”

    • Dale says:

      Science, as I hope you know is a self-correcting, non-emotional process. Because you ARE emotional, and, I hope, realize that illogical decisions are often made by emotional responses, I can only surmise your post to be entirely selfish, ignorant and self-centered. The problem with you suggesting “you try a little kindness instead of cleverness” validates EXACTLY what I said in my previous sentence. Kindness, along with scientific, demonstrable facts have been presented over and over again, yet idiots (yes, if you fail to understand basic principles that have been explained in numbingly dumbed-down detail, you ARE an idiot, in my opinion) like you don’t even give them a half-hearted regard , and return to your own woe-is-me diatribe. When such irresponsible actions are taken, and can very realistically cause harm to others, you are as selfish as the harshest definition of the word. Get over yourself, and THINK!

  8. Jeffrey Patten says:

    The anecdote of the child who had a seizure just prior to a vaccination reminded me of a similar circumstance in my own family. When she was young, before we met, my wife considered having breast implants. Ultimately, she decided against it. I should also add that, when she was two years old, my wife had polio; she was treated for it in Europe (this was in 1953), and she had little in the way of obvious long-term problems related to it.

    When she reached her 40’s, my wife started having some problems with chronic fatigue and chronic pain. She had been hit by a car while riding a bicycle when she was in her 30’s, and she had undergone a number of spinal surgeries, but these problems did not correlate well with individual, focal injuries. Ultimately, she was diagnosed with post-polio syndrome. This diagnosis is, in general, a diagnosis of exclusion, but she had a couple of experiences (such as suffering a severe worsening of her symptoms when she started on some “statin” medications) which correlated well with the diagnosis.

    What I came to realize is that, if my wife HAD undergone breast implant surgery, it is quite likely that both she and I would have blamed all of these symptoms on toxic effects of her implants. I am quite sure we would have dismissed explanations as to why they were not to blame as the self-interested efforts of the responsible parties and their political allies. I can understand how these people feel; however, it does not make their conclusions valid.

  9. Swampwitch7 says:

    When the day comes that I take medical advice from a comedian you can shovel me into the crematorium and hit START.

    Truth be told I am getting sick of the rabid fact-free anti-vaccine rant. Let those who object to vaccination withhold them from their children and win their Darwin awards as their children die from preventable illnesses.

  10. Lucy A. Moon says:

    Corporations can pay the CDC Foundation to partner with them:

    “Learn how partnerships begin when an organization’s objectives intersect with CDC’s interests.”

    http://www.cdcfoundation.org/what/partners

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