The plural of anecdote is not data

I’ve been following this discussion in Orac’s comments for a few days now. Dr. Jay Gordon, a AP-friendly Santa Monica pediatrician whose website flirts with anti-vaccinationism, herbal medicine for HIV, and other such woo, and who is a supporter of folks like Jenny Mcarthy and her “Green our Vaccines” campaign, is debating Orac’s commenters in a very uneven battle of wits…and losing, by the looks of it 😀 .

Dr. Gordon’s argument in support of the comments he made in an interview for Cookie Magazine – to quote, “I think that the public health benefits to vaccinating are grossly overstated. I think that if we spent as much time telling people to breastfeed or to quit eating cheese and ice cream, we’d save more lives than we save with the polio vaccine.” – rests upon two main points:

1) Vaccines are no longer necessary in the numbers given today in the developed world because those diseases are no longer present in the community, therefore the risk/benefit analysis changes, especially if giving scientifically unproven credence to patient fears that the number of vaccines given today is “too many, too soon” (why a pediatrician practicing for nearly 30 years is unfamiliar with the concept of herd immunity* , and the copious evidence of what happens when it is eroded, remains a mystery).

2) In his nearly 30 years of practicing medicine, he has personally seen children who’ve “changed” (I assume he means they developed autistic symptomatology) after immunization – or at least, that is what their parents attributed their children’s change to. In other words, anecdotal evidence.

I’ve already said my piece about Dr. Gordon’s claims in the interview, which are similar to those made by a like-minded pediatrician. And I really can’t help him if he chooses to ignore what will happen when his actions (vaccinating with fewer vaccines later, or outright support of non-vaccination due to superstition) help erode herd immunity. But I’d like to relate to point #2 of his argument – the supposedly convincing anecdotes.

It so happens that I have such an anecdotal story to tell, one I’ve been hearing since I could first comprehend spoken language. The injured party has graciously allowed me to tell her story, and has stressed she believes 100% that vaccines caused her to fall ill (having looked over the medical records that remain, I’m not so sure. But that was the story told me in my childhood). While this story is an anecdote, to be taken as such, it can illustrate why anecdotal evidence, even in the plural, is not proof of an association between two events such as vaccination and disease.

In June of 1964, my mother had everything going for her: a pretty, completely healthy, exceptionally bright young woman, she was admitted at age 15.5 years to an Ivy League women’s college. As there were students from all over the world who came to study at this college, and there had been reports of smallpox epidemics in the preceding year, smallpox vaccination was a requirement for attending college. Mom complied with that requirement (I am not sure, but am assuming this was a repeat vaccination, as all infants were vaccinated for smallpox in those days. That first vaccine was apparently completely unremarkable, to the point my grandmother can’t even remember if she’d actually gotten it, though).

Approximately 1.5-2 weeks later, she became ill, with fever, a blotchy rash on her face and a sore throat. Antibiotics were administered and the fever resolved, but she became progressively drowsy and confused, and a seizure disorder developed. To excerpt a quote from a clinical summary written by one of her pediatric neurologists:

The subsequent 2 weeks were marked by severe seizure activity, dystonic choreiform and other abnormal movements, transient ocular-motor paralysis with dilated fixed pupils, a second rise in fever to over 105-6 not responding to salicylates.

If you get the impression that she was very sick and nearly died, you’d be quite right. Laboratory tests, however, revealed nothing except slightly elevated white blood cells in the spinal fluid, which could indicate non-specific encephalitis. There were a couple of oral ulcers that presented during her illness consistent with the rare Behçet’s disease, however she did not meet the full diagnostic criteria for this syndrome (most notably, she had no eye involvement).

My mother spent 5 weeks in the hospital, emerging with a permanent seizure disorder (which has been controlled with medication, with variable success) and a moderate to severe short-term memory loss which persists to this day. Her IQ was thought to have dropped some 50 points in mathematical ability and 20 on the verbal score. In the first few years, her mental status fluctuated, but it is a tribute to her resolute personality that she managed to attend the Ivy League college (and when I was a teenager, recieved a master’s degree from an Israeli university), get married, have and care for a child, and in general, lead a semi-normal life despite some rather profound handicaps.

Just so you don’t think I’m making this up, you can view the first page of a medical summary by her neurologist dated 1967, detailing her vaccination and subsequent events. Names and other identifiers have been obscured for privacy, naturally.

According to Mom and other family members, she’d had a smallpox vaccine and her disease was, in effect, a vaccine reaction (and Mom, at least, is not really open to discussing any other possibility). The presumptive diagnosis of post-vaccinial encephalitis (which occurs in reaction to the weakened cowpox virus introduced during such vaccination, in 1:300,000 doses given) is possible, though there were no reliable methods to tests this hypothesis in 1964. Equally possible, if not more likely, was that my mother had been unlucky enough to be stricken by another unidentified virus which was the cause of her encephalitis, or that she’d had Behçet’s disease after all. My impression is that most of her physicians thought it was another viral encephalitis, and what information I have makes me tend to agree: the only real connection to the vaccine is a temporal one. However, there is no doubt that had she been vaccinated in the US today with these subsequent developments, she would have been eligible for compensation from the government, regardless, merely because of the temporal relation. However, that still would not be proof the government had conceded the injury was vaccine-related.

Not to mention that though my mother’s case was severe. and as a result, the temporal relationship was documented precisely, many anecdotes of this kind rely mostly on the parent’s memories, which as I’ve pointed out before, may be tricky and subject to recall bias. e.g the symptoms may have started before vaccination, but remembered as showing up only afterwards because the event of the vaccinations stood out in their minds. I’ve mentioned this before in regard to the thimerosal/autism causation theory.

To her great credit, Mom did not become anti-vaccine as a result. I was given all the standard vaccines, including the then-newfangled MMR, at my doctor’s office (she did stipulate that all my vaccines, including those normally given by the school nurse, were to be given at the pediatrician’s office only; I remember those doctor’s visits as frought with tension on her part). The smallpox vaccine had been discontinued by then, so she didn’t have to worry about that one. Having grown up in the 50’s and 60’s and having personally known victims of polio and measles, she did not cave into the comfortable sensation of panic that I might share her fate as a result of a vaccine. It was a freak occurrence, not likely to happen again.

One can, however, surmise what would have happened if the Internet, the parents with their anecdotes, and the Dr. Jay Gordons of this world had been around back then…

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*Great Flash animated demo of herd immunity, well worth the click-on and to use as a debate resource. Just sayin’.

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15 Responses

  1. Jay Gordon really needs to shut the hell up. He was involved in the Christine Maggiore case, in which an HIV-positive mother refused to test her daughter for HIV infection and breastfed because “HIV doesn’t cause AIDS.” (she didn’t vaccinate her daughter, either). The daughter eventually died of AIDS-related pneumonia (though the mother claims it was a result of a bad reaction to an antibiotic).

    http://articles.latimes.com/2005/sep/24/local/me-eliza24

    Gordon cares for a lot of children in my area and it really pisses me off that he’s encouraging this garbage and putting my kid at risk.

  2. Sorry for the serial post, but had to share a quote from the mother, musing on why her daughter had “chosen to go home.”

    ” She struggled most with the whys.

    “Why our child – so appreciated, so held, so carefully nurtured – and not one ignored, abused or abandoned?” she wrote. “How come what we offered was not enough to keep her here when children with far less – impatient distracted parents, a small apartment on a busy street, extended day care, Oscar Mayer Lunchables – will happily stay?””

    In her universe, Lunchables = neglect and Failing to get treatment for your HIV-positive daughter=loving parent. Holy crap.

  3. Li – Having read a great deal on Maggiore case, I had the same reaction. It says a lot about Dr. Gordon and his mentor, Dr. Fleiss (who was also this little girl’s doctor and is Heidi Fleiss’ father) that they were willing to allow this to continue with their support without regard for the lack of scientific basis for HIV deniers.

    Dr. Gordon’s support of using anecdotes as science has ended in disaster before and I sincerely hope that there are no further victims caused by his irresponsible and uniformed anti-vax advocacy.

    Dr. Gordon and company seem more interested in protecting an idea than looking at the facts and protecting the children he has promised not to harm.
    In fact, in the comment section of the Orac post Dr. Gordon admits that he gives “expert” advice on the subject and also acknowledges he is NOT an expert but an “expert” observer. Scary times, indeed when journalists do not go any farther than repeating nonsense. Dr. Gordon clearly can not argue the facts but continues to state that he disagrees with pro-vaxers but can not base his disagreement on anything in the world of science . . .

    Dr. Gordon needs to retire. Let’s hope that happens sooner than later.

  4. Please stop pre-empting my next post, Li 😆 !

    I think that passage you quote was what ‘got’ to everybody.

  5. Whoa, this is truly out there. I only just learned of this case and I am still having a hard time processing this.

    If Li has truly pre-empted you, I wonder if you could address the issues of spreading out the shots or delaying them. It seems that this is a something that pro-vaxers concede is probably OK, but this is not based on anything. In the discussion following Orac’s post, someone points out that the diseases don’t wait for the later vax date. Given that there was just a pertussis outbreak nearby, this is good enough for me, but probably not for the vax-cautious.

    In my neck of the woods, it’s fashionable to say you want to spread the MMR out, but in my poking around it seems the individual vaccines don’t have nearly the clinical trial that the MMR has and so may not be as safe. Is that about right?

  6. Nah, it’s OK, Willa. I have a whole lot more to say about that case. Don’t worry, the blogpost will be as verbose as usual 🙂 .

    I think the issue you raised about separating/delaying vaxes is an important one, well worthy of a blogpost. I’m trying to find Dr. Robert Sears’ vaccine book to try and figure out what schedule he recommends – I think I have a lead for this so I can write that post as well.

  7. I haven’t read the book, but my understanding is that he thinks the MMR should be spread out because it just feels like too much at one time, no research to back up the feeling. In the US, this is rather difficult to do. Doctor’s offices don’t stock them so it is up to the individual to buy them directly from the pharmaceutical company (and then store them properly until the injection) or go to the health department. Not all health departments stock these and I have heard stories of the pharmaceutical being back-ordered on some of the individual vaccines so that pushes back the date of the vaccination even more. All the while herd immunity is eroded. An aside: all this work seems to be more about process, something you’ve discussed before.

    I only know one person socially who has separated the MMR and she said one of the things that happened to her was that she forgot to do the rubella. Luckily, her doctor’s office called to remind her and she felt kind of bad that it had slipped off her radar.

    There are two research scientists on the immunization debate board I skim through occasionally and one of them said she met Dr. Sears at a conference and asked him point blank if he’d ever seen a case of measles. He admitted he hadn’t, yet he continues to advocate splitting the shots up.

  8. Esther, if you’re going to write about the Maggiore case, be sure to read the California medical board’s complaint against Dr. Fleiss.

    http://www.aidstruth.org/PaulFleissMedicalReview.pdf

  9. I’ve had it open in another browser tab for the past couple of days 🙂 .

  10. LOL. We seem to be on the same wavelength! 🙂

  11. Honestly, even if refusing vaccinations for children is still legal, a doctor who encourages parents not to vaccinate their children should have their medical license revoked.

    If they’re studying the effects of vaccines, fine. If they don’t believe in vaccines for their own kids, fine. But if they use their title in any anti-vaccine opinion piece, or otherwise use their status as a doctor to influence other parents not to vaccinate, their license should be revoked.

    Same for any doctor who believes HIV doesn’t cause AIDS. That’s just medical ignorance.

  12. How can Dr Gordon claim he is not a denialist on Orac’s comments and still keep his “herbal remedies” postings for AIDS/HIV up on his site? Am I wrong or to these two things contradict each other?

  13. Slightly paranoid here but I can’t seem to open Orac any more. I can see all the other science blogs fine… It crashes IE.

    More on topic. I thing the point about vaccine compensation is really interesting. I’m interested in the way that an official endorsement of something like a temporal relationship between an illness and a vaccine creates a culture of fear amongst parents. I have been following the panic in the United States about Bisphenol A in plastics.

    Without getting to far into it, I believe there is no basis for this panic. The EU just released their 4th risk assessment last week which says in effect that Bisphenol A can not cause cancer, early onset puberty, obesity or breast cancer in human beings because we metabolize it so efficiently.

    But the Canadian Health Minister has announced he’s going to ban it in children’s products anyway, quite explicitily remarking that there is no evidence that it is a problem. Now the American government wants to do the same thing on the basis that regulators should be err on the side of caution just as a parent would.

    But when regulators act on the basis of fear where does that leave parents? With no rational standard parents find themselves having to regard any scare that comes along – like the latest cell phone cancer scare out of Pittsburgh (based on ‘unpublished research’) with a certain level of seriousness they clearly do not deserve.

    I hope this wasn’t too off topic. As an aside, I can’t resist, the arguments people who believe low doses of BPA cause just about any disease (yes, there are some people who think it causes autism) are strikingly similar to the antivaxers both in their initial claims and subsequent retreats.

    Nancy

  14. I think the government gets into a really sticky situation when they find a substance that may cause cancer, or autism, or whatever the condition of the month may be.

    If they allow the substance to remain in any products and it turns out that it is harmful, then the government is an evil agency that kills babies and only cares about money. Even if it doesn’t turn out to be harmful, people say that it should have been removed, just because there could have been a problem.

    However, if something is banned based on a suspicion, there is a mass panic where everyone is convinced that the substance is the sole cause of everything that ails them, no matter how ridiculous. And even if it turns out that there really wasn’t anything to worry about, you’ll never be able to convince the radicals that the studies haven’t been compromised by the interest groups.

    I think if people would quit being so lawsuit-happy, it could makes everyone’s lives a lot easier. Right now you have to be 100% sure of everything at all times to cover your butt.

  15. Nancy, I forgot to thank you for that pertussis article you referenced me. The abstract was a good read – I think I’ll look the full-text up when I get the chance.

    STATS.org had a comprehensive article on the baby bottle brouhaha. This isn’t the first scare to come up regarding ‘chemicals’ in bottles and probably not the last, either. I think the whole thing’s ridiculous, but am equally sure the Sigg bottle manufacturers had a ball with it (not that I’m accusing them of a conspiracy to sell more of their bottles, mind…just that they took advantage of the opportunity).

    I think the most effective approach is to educate from an early age that chemophobia is stupid and ignorant.

    I think Dr. Gordon is claiming to push his “alternative” HIV treatments as complementary, not alternative Rx’s. It’s still a bunch of nonsense. And he still needed to cover his ass towards the CA medical board, to remind you.

    And Lisa – that’s why I think removing aluminum from vaccines in a manner similar to thimerosal removal would be very harmful, as antivax types would again pounce on it as a tacit admission of guilt.

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