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April 22, 2008

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JOM has an article on Veganism.

Unfortunately, like most medical woo, anti-vax is largely (though not entirely) leftist phenomenon. I hate that this is true, but it is. Especially given how many high-profile liberal celebrities are on the anti-vax bandwagon, it's just not politically feasible for a Democratic candidate to speak the truth on this. Which is that the research has, in fact, been done, and that we know with a high degree of certainty that there is no link between autism and vaccines, never mind between autism and thimerosal specifically.

Michael Berube has done a thorough examination of Clinton and Obama proposals on disability matters just this morning, it turns out. Relevant reading!

Rep. Dan Burton (R-Ind), is deep into the woo as well.

The vaccinate v unvaccinated study is impractical and probably immoral. To do it in a meaningful way, you would need a very large sample (50,000+). Half of the kids would receive placebo vaccinations from birth to three. The study would have to be double-blinded, so neither the parents nor their pediatricians would know if the children would receive protection from mumps, measles, rubella, whooping cough, hepatitis, etc.

Needless to say, no institutional review board would ever approve putting thousands of children at risk just to prove what every bona fide researcher already knows - that vaccines don't cause autism.

I'm very disappointed in Obama. I've been supporting his cause with donations, and I've convinced my Republican sister to vote for him. Now this. Oy vay!

I thought the anti-vax folks were split between old hippies and Libertarians.

I read Berube's piece all the way down to the part about unfunded federal mandates, at which point he lost me.

Maybe he's making some point in the abstract, though.

I thought the anti-vax folks were split between old hippies and Libertarians.

Vax are obsolete.

i met my wife on a Vax.

Hilzoy,

I see nothing wrong with Obama's comments, at all. Respectfully, I think you're missing some things:

http://www.medhumanities.org/2008/03/on-vaccinations.html

The anti-vaccine crowd needs to do a field trip to India. They could see the results that insufficient use of the polio vaccine has had. It's not pretty. They should also be required to give twenty rupees (45 cents) to every polio afflicted beggar they meet there. That way, they will quickly become broke and won't be able to come back here and vote.

Joshua: I was under the impression that there was a lot of overlap between anti-vacciners and home-schoolers of the "no godless commie feds will tell me what to do with my kids" variety. I don't know what the relative size of that group is compared to the new-agey kind; has anyone tried to survey this?

Daniel S. Goldberg: what more did I miss? Last I checked, thimerosal was the alleged culprit linking vaccines to autism. Both candidates' quotes are about the link to autism in particular, not disease in general. The link you gave says that "There is currently no evidence whatsoever that thimerosal has any causal link with any kind of disease, syndrome, or illness." Plus, there's considerable evidence that it is not linked to autism in particular.

Slarti: It's worth reading further. Jetlag (that excuse again! have to use it while I can!) has busted my Slartironymeter, so I cant tell whether you did, in fact, get the point he was making, but: IDEA is a mandate, and it's underfunded, which means that the funding part of it is passed on to states. E.g., it's an unfunded mandate, and if someone complains about unfunded mandates, asking whether they want to fully fund this is a place to start.

I have to agree with Joshua. Sure, there are a few denialists deep in the altie woo on the right, but the real figureheads like http://oracknows.blogspot.com/2005/12/bill-maher-anti-vax-wingnut.html>Bill Maher are pretty much all on the left. There's a lot of this at Huffington Post as well. It's shameful.

Daniel Goldberg, if you're still thinking it's OK for Obama et al. to say these things, here are some places to start. The http://www.cdc.gov/od/science/iso/concerns/mmr_autism.htm>Centers for Disease Control, the http://www.iom.edu/CMS/3793/4705/20155.aspx>National Academy of Sciences and the UK's http://www.mmrthefacts.nhs.uk/>National Health Service have concluded that there is no link between the MMR vaccine (the one usually alleged to cause problems) and autism.

The studies have been done, in Europe and elsewhere, where socialized medicine makes it easy to check these "hey, do people who do A or B develop C?" questions. There is no link. Proposing "further study" means you're not spending that money on something else, like better treatment, or finding the actual cause.

Heavy metals or another pollutant that's increased over this century, with a genetic disposition to develop autism in the presence of said pollutant, is the most convincing I've heard. (It accounts for both running in families (genetic) and increasing over the past several decades (change in environment).) But they haven't nailed down said pollutant.

Hilzoy: as I pointed out to Dr. Bérubé on the CT thread, the politician complaining about unfunded mandates is complaining about the mandate, not about the lack of funding -- rather than fund IDEA he thinks it should be repealed. Generally such a politician will not want to talk about repealing particular individual mandates for fear they may be popular, but will talk about repealing or wishing away mandates in general terms.

Hilzoy,

Well, I think you missed a number of different points. First, the fact that we have no evidence of any link between vaccines and autism does not mean there exists no such link, especially where (1) our ability to discern disease causality is limited; (2) we have only begun to explore the possibility of such a link, and our explorations of the link have been limited to thimerosal; and (3) the history of opposition to vaccine is long-standing, and instructive, especially where vaccines have been wielded as tools against the most disadvantaged and marginalized members of society.

For those of you who didn't actually take the time to read my perspective (i.e., Russell), I am NOT and have never suggested that kids ought not to be vaccinated. Quite the contrary, I have not hesitated to vaccinate my own 5-month old, nor would I recommend others refrain from vaccinating their own children.

What I am suggesting is that we pay a bit more attention to the inherent uncertainties of medical science, and in particular that we really have an enormous amount of trouble in establishing medical causation, or its lack thereof. The fact is that there are statistically significant correlations between autism and vaccinations. Are these correlations spurious? Quite possibly.

Do we know this for sure? Absolutely not. The history of medicine is replete with examples where the best evidence shows X, before we've really investigated the subject, and then we find out not-X. The recent discourse on hormone replacement therapy shows this quite well. In 2001, if you had told virtually anyone that HRT could be dangerous you would have been absolutely mocked.

No one even considered the possibility that HRT actually increased the risk of certain kinds of cancers.

My point is simply that there is a great deal we do not know about vaccines and autism. We have no evidence, other than a mountain of narrative evidence, linking vaccines and autism. Well and good -- this is certainly an excellent basis for concluding that kids ought to be vaccinated. But arguing this is not equivalent to suggesting that we have no reason to wonder about the correlations between vaccines and autism, especially when we know damn well that vaccines are inherently dangerous (if you don't believe me, read Oshinsky's book on polio and review the bitter controversy between Sabin and Salk), and when we have done almost nothing to investigate the correlations beyond the thimerosol issue.

This is why I suggest in my post that "thimserosol" is a red herring. The likelihood that thimerosol is a causal agent in autism or any other disease is almost nothing. This by itself does not prove there exist no other causal agents linked to vaccines that do not play a contributing factor.

Accordingly, I don't really see any problem with either Obama or Clinton's comments. They are acknowleding the uncertainty. Those who deny even the possibility of a link between vaccines and autism when we have only barely begun to actually investigate the question (beyond thimerosol) demonstrate, to my mind, far too positivistic an attitude towards science and medical causation than I deem warranted.

Should kids currently be vaccinated? Surely. Does that mean there is no reason for suspicion, or that we should be closed off to the need to investigate the links between vaccines and illness? No.

That's all I was trying to say, and I think your post kind of leaves some of these issues untouched.

the "no godless commie feds will tell me what to do with my kids" variety

Man, even when I sort of fit that description, I still fully supported universal vaccination of kids.

What The Modesto Kid said, hilzoy. He/she had already observed that in crookedtimber comments, so I saw no need to pursue further, there.

I think it was a gratuitous dig that failed, really, and wasn't really a necessary part of the larger point. But I'm quirky in my reading habits.

My understanding is that the supposed correlation between vaccination rates and incidence of autism is illusory. Indeed, the "rise" in autism itself is illusory, and is a product of (1) a change in diagnostic criteria and (2) greater awareness leading to more diagnoses.

I don't have the cites handy, but it's somewhere on Respectful Insolence: http://scienceblogs.com/insolence/

Respectful Insolence is, in fact, a good place to start for information on this topic.

"E.g., it's an unfunded mandate, and if someone complains about unfunded mandates, asking whether they want to fully fund this is a place to start."

I think this is a liberal misreading of a conservative point and it is almost humorous in how it reveals mindset. (I don't mean that as a dig to either side, as we both have our own little blinders). The complaint about unfunded mandates is that you shouldn't make the mandate in the first place, not that you should fund it.

(It is actually a more subtle point than that but I'm not sure I can do it justice in the time I have right this second. But since I'm a sucker, here goes.)

Part of the point in complaining about unfunded mandates is that it creates a rule while passing off the economic consequences of the rule to someone else. Of course the same is true about deficit spending...

And what I mean about revealing mindset is that both sides can see

UNFUNDED MANDATE

and have two completely opposed impulses.

Liberals read that as "something that needs to be funded".

Conservatives read that as "something that clearly isn't worth mandating".

I'd think you make it a test but once knowing both options being tested for ruins it.

" If our candidates don't know the facts, they shouldn't pretend that they do."

Unfortunately, they're not pretending if they don't know that they don't know the facts. In other words, I don't think they're intentionally trying to distort and I don't think they're aware they don't know what they're talking about. I think in both cases, they're simply misinformed, in other words on this issue they are the classic low-information voter.

The truth is, anti-vax has a movement and they've got marketing. Even if candidates knew the truth, they might stick to the relatively safe position of advocating "more study" as long as the debate is between an organized group on the anti-vax side and a loose collection of better informed people on the pro-vax side.

If you want to stop hearing this, you need to organize. Raise a unified voice so that there's a political price to be paid when candidates advocate study (or worse) and fail to champion vaccination.

Conservatives read that as "something that clearly isn't worth mandating".

...It is a little bit worthwhile trying to get conservatives to affirm this in individual cases, since the particular mandates may be popular; talking about "unfunded mandates" can be a way of dodging having to say, "I don't think that states should have to pay for school lunches for hungry, undernourished children." But, framing is pretty well a guaranteed losing battle for liberals in the current cultural context.

Daniel,

Thanks for your excellent comments. I have to admit I've given up on arguing this topic. I am amazed at how ready lefty intellectuals are to summarily dismiss this issue. People are simply not aware of how much uncertainty is involved. Not to mention the many unintended consequences of what appears to be the unmitigated success of modern medicine (e.g. super strains of viruses).

More importantly, congratulations on your baby! He/she is one lucky child.

.

Part of the point in complaining about unfunded mandates is that it creates a rule while passing off the economic consequences of the rule to someone else. Of course the same is true about deficit spending...

In all fairness, I think it should be pointed out that the flip side of unfunded mandates is that it allows a politician to adopt the posture of taking action on an issue while doing exactly nothing to ensure that anything will (or even can) actually get done about it.

"In all fairness, I think it should be pointed out that the flip side of unfunded mandates is that it allows a politician to adopt the posture of taking action on an issue while doing exactly nothing to ensure that anything will (or even can) actually get done about it."

Exactly correct. It is the domestic policy equivalent to UN strongly worded declarations of naughtiness seen for example in Darfur.

An unfunded mandate essentially says "this is not important enough for me to publically raise taxes over but I want to appear morally righteous anyway".

I think it should be pointed out that the flip side of unfunded mandates is that it allows a politician to adopt the posture of taking action on an issue while doing exactly nothing to ensure that anything will (or even can) actually get done about it.

Or, even more exactly, it allows a DC politician to heroically implement a given measure with (again, heroically) zero impact to the federal budget. Some poor state/local sods get no credit and full blame for having to raise taxes to fund said measure.

the fact that we have no evidence of any link between vaccines and autism does not mean there exists no such link

You're doing it all wrong. The correct Rumsfeldian quote is "the absence of evidence is not evidence of absence" which means that the only logical choice is to nuke Baghdad.

...the history of opposition to vaccine is long-standing, and instructive, especially where vaccines have been wielded as tools against the most disadvantaged and marginalized members of society

Well, historically, birth control has been associated with the eugenics movement and a systematic effort to ensure that marginalized members of society could not reproduce. But that has no real relevance to current debates about contraception. If you have a point to make about disparities regarding who gets what vaccines NOW, then please make it. Otherwise, I'd appreciate it if you didn't make evidence-free guilt by association smears.

For those of you who didn't actually take the time to read my perspective (i.e., Russell), I am NOT and have never suggested that kids ought not to be vaccinated.

If you had real political power, then your individual actions might matter to me. But you don't. The anti-vax movement does have power, they do encourage parents to keep their children from getting vaccinated and they do shape the debate.

What I am suggesting is that we pay a bit more attention to the inherent uncertainties of medical science, and in particular that we really have an enormous amount of trouble in establishing medical causation, or its lack thereof.

I pay a great deal of attention to such issues thank you very much. Saying that "we" should "pay attention" to a particular feature of medical science is useless though. What practical action should we take? Most people are never going to read a scientific paper of any kind, let alone one dealing with vaccination. In fact, most people are never going to engage in any way with the actual science. So what policy changes do you want? Or do you just want a public relations campaign encouraging people to uncritically adopt your particular views?

The fact is that there are statistically significant correlations between autism and vaccinations. Are these correlations spurious? Quite possibly.

There are statistically significant correlations between just about any pair of variables you care about. So what? There's a much stronger correlation between my age and the incidence of autism. Do you think that killing me will reduce the number of autism cases seen next year? Should the government spend a trillion dollars making a time machine to transport me into the past?

Do we know this for sure? Absolutely not.

We don't know anything for sure. If the standard of caution required for a medical procedure is "knowing for sure" then we will never perform any medical procedures. That's why talking about "knowing for sure" is a distraction, especially when discussing these issues with people who don't have some experience thinking about uncertainty in practical terms.

My point is simply that there is a great deal we do not know about vaccines and autism. We have no evidence, other than a mountain of narrative evidence, linking vaccines and autism.

What on Earth is "narrative evidence"? Is that the same as anecdotal evidence? What are the anecdotes, that autism symptoms manifest shortly after a particular vaccine is administered? I'm surprised given how long your comment was that you never described what this "narrative evidence" is.

Well and good -- this is certainly an excellent basis for concluding that kids ought to be vaccinated. But arguing this is not equivalent to suggesting that we have no reason to wonder about the correlations between vaccines and autism, especially when we know damn well that vaccines are inherently dangerous...

This is a strawman: no one is arguing that vaccines are risk-free. Any substance administered to 100% of the population will trigger adverse reactions in some.

This is why I suggest in my post that "thimserosol" is a red herring. The likelihood that thimerosol is a causal agent in autism or any other disease is almost nothing. This by itself does not prove there exist no other causal agents linked to vaccines that do not play a contributing factor.

Really? Because I've been listening to anti-vax people tell me, for years, that thimserosol causes autism. This isn't just one person; this was the position of an entire movement. Now that the evidence suggests that thmserosol does not cause autism, the movement is furiously trying to backpedal and hope no one notices their shredded credibility.

Accordingly, I don't really see any problem with either Obama or Clinton's comments. They are acknowleding the uncertainty. Those who deny even the possibility of a link between vaccines and autism when we have only barely begun to actually investigate the question (beyond thimerosol) demonstrate, to my mind, far too positivistic an attitude towards science and medical causation than I deem warranted.

The problem is that when politicians mouth platitudes like this, normal people don't hear that and say "hmmm, I guess thimserosol isn't a big deal but I should direct increased funding in the NIH budget to determine what is driving increased autism diagnoses"; instead, they say "hmmm, Obama/Clinton/McCain is someone that I trust who is advised by experts and they now say that there's a problem with vaccines causing autism so I guess maybe I shouldn't get my kid vaccinated".

I suppose if we lived in a fictional world populated with fictional Americans that knew a great deal about science, their comments wouldn't be a problem. But in this world, most people have neither the time, skills, or inclination needed to seriously analyze a scientific question, and therefore must rely on statements from authorities. When authorities make these kind of equivocal statements, most people will be more inclined to believe that vaccination is bad. For some people, that extra inclination will push them over the edge into deciding that they won't get their kids vaccinated. The consequence of these statements is that some children will not get vaccinated; there is no benefit.

Should kids currently be vaccinated? Surely. Does that mean there is no reason for suspicion, or that we should be closed off to the need to investigate the links between vaccines and illness? No.

Making these statements causes some kids not to get vaccinated. Making these statements does nothing to change research funding.

That's all I was trying to say, and I think your post kind of leaves some of these issues untouched.

Yeah, hilzoy has a long history of failing to discuss unspecified "narrative evidence" in her posts; it is one of her many failings.

An unfunded mandate essentially says "this is not important enough for me to publically raise taxes over but I want to appear morally righteous anyway".

[ObCheapShot] Like the Iraq War![/ObCheapShot]

unfunded mandate.... we used to call that "going Dutch".

kids these days think they're so smart.

Turbulence,

Being more than a little weary of blog comment wars, I have no interest in responding point by point.

I admit you have a perfectly reasonable point that while an academic's perspective on vaccinations and medical uncertainty is legitimate, having a presidential candidate speak as such to the public could encourage anti-vaccination movements. OTOH, I don't think we should actively encourage obfuscation and pretenses to a mythical epidemiologic and scientific certainty on the part of our political leaders; they do enough of that as it is.

Obama and Clinton really did nothing other than acknowledge the fact that we, at present, know very little about the possible connections between vaccines and illness (mostly because we have only barely begun to actually examine the possible connections), and that we certainly should not consider the matter closed to investigation. But I concede that because this message is very likely to be interpreted in ways that may lend succor to anti-vaccination campaigns, the statements are problematic.

As for narrative evidence, why not actually take a look at the post I linked? It says the following:

"While we have no good scientific evidence, we have an abundance of anecdotal evidence that I, as a new father, find to be quite frightening. From a [medical humanities] perspective, the question becomes how does one square the legitimate notion that anecdote is poor evidence, if it is evidence at all, with the crucial proposition that narrative evidence is most assuredly evidence, and vital evidence, at that. Stories matter, especially as to human suffering, health, and illness."

There's a robust literature on the importance of narrative and stories in context of human health and illness. I tend to think these stories have value, and that one should at least be willing to listen to them, even though they obviously ought not be the determinant of clinical decision-making.

As for narrative evidence, why not actually take a look at the post I linked? It says the following:

"While we have no good scientific evidence, we have an abundance of anecdotal evidence that I, as a new father, find to be quite frightening. From a [medical humanities] perspective, the question becomes how does one square the legitimate notion that anecdote is poor evidence, if it is evidence at all, with the crucial proposition that narrative evidence is most assuredly evidence, and vital evidence, at that. Stories matter, especially as to human suffering, health, and illness."

I did look at the post. And I didn't see any evidence. I didn't even see a description of what the evidence would show. I'm not sure what exactly you have in these narratives that you allude to but have not described or linked to. Whatever it is though, I don't think you can call it "evidence" without saying what it is. Narratives by themselves are meaningless: an infinite stream of data recounting someone's life has lots of useful information but is useless for making scientific determinations. You need to reduce the data to something smaller than "all information about this patient's life" or even "all the random stuff about the patient's childhood that the parent remembered and thought important enough to mention".

So, again, can you tell me more about this narrative evidence? What is it in these narratives that we should focus on? What pattern do you find in these narratives that is suggestive or even just plain relevant to the medical questions?

There's a robust literature on the importance of narrative and stories in context of human health and illness. I tend to think these stories have value, and that one should at least be willing to listen to them, even though they obviously ought not be the determinant of clinical decision-making.

Well, there's also a robust literature on how you can determine a person's intelligence and moral worth just by examining the bumps on their head. I don't think we should pay any attention to such literature though.

Again, I'm not saying that narratives are completely useless or have no place in medicine. Of course stories have value. But most stories are not useful in answering most questions. So I'm more than willing to listen, but I don't understand what you're claiming I'll find. Also, if the cause of autism boils down to widely distributed environmental pollutants triggering a genetic susceptibility, then narrative evidence will tell us absolutely nothing; it will only distract us from the real causes.

Turbulence,

Narratives by themselves are meaningless: an infinite stream of data recounting someone's life has lots of useful information but is useless for making scientific determinations.

But most stories are not useful in answering most questions.

We profoundly disagree on this point. Narratives are most assuredly not meaningless, esp. in thinking about human health and illness.

Narrative evidence is just what it sounds like -- people's stories. Physicians and scientists in particular spend far too little time actually listening to people's stories; and again, don't take my word for it. Examine the extensive scholarship on the role of narrative in medicine. I think analogizing this literature -- while implying you have not even examined it -- to "phrenology" is, to say the least, disingenuous.

I'm not interested in providing a bibliography for you on literature and medicine, but you can start with Rita Charon's web site (www.narrativemedicine.org) and go on from there. If you're actually interested in knowing more about this, as opposed to just sneering at the very idea that stories can tell us meaningful and important things about people's phenomenological experiences related to health and illness -- things which literally cannot be captured through objectifying and scientific modalities -- please feel free to email me.

(Don't take any of the above as an assertion that narratives are always or even mostly the best evidence. But to suggest that we can safely ignore them in thinking about health and illness is a grievous error that too many health care providers have been all too comfortable making for far too long).

So...what's your suggestion, Daniel?

As for narrative evidence, why not actually take a look at the post I linked? It says the following:

"While we have no good scientific evidence, we have an abundance of anecdotal evidence that I, as a new father, find to be quite frightening. From a [medical humanities] perspective, the question becomes how does one square the legitimate notion that anecdote is poor evidence, if it is evidence at all, with the crucial proposition that narrative evidence is most assuredly evidence, and vital evidence, at that. Stories matter, especially as to human suffering, health, and illness."

As a datapoint, I read that paragraph, and I register it as containing zero content.

I could break it down phrase by phrase for you, but that's the bottom line: you've directed me/us to read and consider something that has no relevant content.

(Findable content: the author is frightened.)

"There's a robust literature on the importance of narrative and stories in context of human health and illness. I tend to think these stories have value...."

So do I, but not as substitutes for facts. What you're saying seems to boil down to "we can't know everything, therefore we should emphasize that we don't know everything, and therefore...," and I don't know what to fill in as the conclusion: underpants gnomes will bring us profits? "Listen"?

Okay, I read your comment. Now what do I do?

Daniel, the phrenology point was only intended to address your statement that there exists a substantial literature...I did not intend to imply that the rest of your claims were akin to phrenology.

To be honest, I don't see what claims you are making in this case. People have stories. Those stories might turn out to be important for learning more about the causes of autism. Or they might not. Scientists have always used community stories to guide their research to some extent. Perhaps not as much as you might have liked, but narratives will often lead you done the wrong path anyway. No one has proposed banning scientists from listening to narratives.

So what claims are you making? That scientists should pay more attention to narratives? How much more attention? What should do they do less of instead? Which scientists? Why should they listen to you? What policy do you propose that would bring about that result?

You said earlier that when you read through this narrative evidence, it terrified you. What was it that terrified you? Was it merely the existence of autism? Because I don't think telling scientists that autism exists and is very bad will help the research much.

A-train said: "I am amazed at how ready lefty intellectuals are to summarily dismiss this issue. People are simply not aware of how much uncertainty is involved. Not to mention the many unintended consequences of what appears to be the unmitigated success of modern medicine (e.g. super strains of viruses)."

What are you talking about? There are no "super strains of viruses". There are antibiotic-resistant strains of bacteria, which are an unintended consequence of modern medicine, but they're also only a problem in the sense that modern medicine doesn't work well on them; the non-resistant strains would make you just as sick without treatment. And chronic viral infections like HIV and hepatitis B can develop drug-resistant strains, but again, those aren't any more virulent than the old kind -- plus, no one ever said the medical treatment for those was an "unmitigated success".

I don't summarily dismiss "this issue"; I summarily dismiss people who don't know what they're talking about.

While we have no good scientific evidence, we have an abundance of anecdotal evidence that I, as a new father, find to be quite frightening.

It always strikes me when I read comments like this that we live in a golden age where people have forgotten what all those diseases we vaccinate against are really like.

We don't have friends who died as a result of polio, or sisters who were born physically disabled because our mothers contracted chickenpox during pregnancy, or cousins with mental disabilities as a result of encephalitis brought on by measles, or brothers who are sterile as a result of contracting mumps as adults.

Even today, in developed countries, a child who contracts measles has a 1 in 1000 chance of dying. Add in the chance of permanent complications, and it's at least on par with the chance of permanent damage due to complications of vaccination, and that's just one disease.

But we fear the vaccines, because we control them ...

Wierd, my being in complete agreement with Gary and Turbulence. It's not as if that never, EVER happens, just that it's fairly uncommon.

Slarti,

Heh. Indeed. I was thinking the same thing.

A couple of things:

First, this does present, to me, the quandary of how you'd ever redo clinical trials of currently-used vaccines. As someone noted upthread, it's just about impossible to do, unless you do it somewhere that said vaccines currently are not being administered. And then you'd get wierd results, I think, because the control population is going to have quite different health issues than, for instance, US or Western Europe, for example.

Probably this isn't a major revelation to people who spend a lot of (read: "any") time thinking about such things.

Second, Daniel seems to be reaching for something outside of science that will still accomplish something sciencey. If we only listen to the stories, and pray, and remain calm, all of us, perhaps the answer will come.

Not being snarky, really; just trying to underscore to what degree Daniel's advise is completely useless. In other words, it'd be nice if there was a point in there, somewhere.

I have to point out that "narrative evidence" (anecdotal evidence to most people) can be used in medicine but only in the absence of good statistical evidence. Which we have plenty of showing vaccines do not cause autism. Pretty simple, really.

I'm all for using the humanities and the touchy-feely stuff for treatment decisions but only in the context of individuals, not policy impacting all.

"It's not as if that never, EVER happens, just that it's fairly uncommon."

Less than you may think, given that I rarely post just to agree, and I agree with each of you some percentage of the time that's at least 75%, but more likely 80-85%, and so whenever the two of you agree on something, the odds are extremely high that I agree as well.

Note that my figures are purely pulled out of an orifice, an impression, a guess, and are not the product of any actual, you know, measuring.

Just to add: I think it's true, but underdefined, to say that narrative evidence is important. (Assuming a credible narrator throughout, for purposes of simplicity.) The question is, important for what? Clearly, it's important for conveying what having a given disease actually feels like, and things like that. It's also important as evidence that something is possible, or has happened (e.g., once): if a credible narrator tells me that she vaccinated her child and then her child developed symptoms of autism, then I would conclude that sometimes, kids get vaccinated and develop symptoms of autism.

What it's not good for, unless the narratives are by a sufficiently large and representative group of parents, is showing things like: that kids who have been vaccinated go on to develop symptoms of autism at rates higher than similar kids of a similar age who have not been vaccinated. I mean, for that you really do need not just some narratives, but comparisons between representative groups that are large enough to yield significant conclusions.

So I'm fine with the importance of narrative evidence; I just don't think it could be anything like definitive on the point at issue here.

I'd also throw in that narratives are indeed of value in understanding the state and history and problems of an individual.

How valuable narratives are, cumulatively, statistically, in offering useful information on groups or populations, is unclear to me, and I'm unread on the topic. If anyone would like to offer cites with actual information, that would be perhaps useful.

Gary, I think I have two books on my shelves on that subject, but am not finding them at the moment. If I can't turn them up, I know who recommended them to me and can ask him for a reminder prodding. Citations when I got 'em.

I don’t have a thing to add here – just seeing if I can post in any thread…

And Slarti: I don't think he has to be reaching outside science, etc. A lab notebook recording observations is, among other things, the story of what a given observer saw. (Admittedly, one in a style with fairly rigid literary conventions, but still.) If the observer is a good one, and the story it tells is that of a well-designed experiment, it tells a story that shows something.

Likewise, if a trained field zoologist is out walking one day and sees, oh, ants doing something that ants have never been known to do before, and recounts her observations, that shows us something abut ants that we didn't know before, something science can use. And if I see that same thing and describe it in such a way that what I saw is clear to people who know ants, and I am credible, same deal. (Here you'd have to wonder more about whether I knew how to interpret and describe what I saw, but that's just because I am less likely to know enough about ants.)

Likewise again, if I had a child, and that child had some disease that was supposed to be 100% unalterably incompatible with, say, my child ever being able to speak, and I tried to talk to my child and encourage her to speak anyways, and lo and behold she did, then if there were no doubts about my credibility -- no suspicion that I was lying, or self-deceived, etc. -- my story would absolutely be usable by science. (Why ever not?)

What's wrong in this case isn't that it's stories; it's that stories do not make an adequately powered experiment involving a representative sample of kids without either a great big coincidence or a lot of effort.

OCSteve: I took that as a hint, and freed your posts. ;)

The purpose of narrative in medicine isn't to try to establish scientific connections and causations. It has no value for that. Where it is important is that doctors need to listen better to patients as they describe symptoms, and take them seriously.

This is something that far too many doctors aren't good at. I've had fibromyalgia since I was about 18, but it wasn't diagnosed until I was in my 30s, because a long series of doctors listened to me describe my symptoms, and then did nothing.

That's where narrative comes in.

Daniel Goldberg: In 2001, if you had told virtually anyone that HRT could be dangerous you would have been absolutely mocked. No one even considered the possibility that HRT actually increased the risk of certain kinds of cancers.

Huh. I've thought it was dangerous since the 1970s. But them I'm just an aging hippie, heavily influenced by participation in the feminist health movement and acutely aware of the abuse heaped on Barbara Seaman, who turned out to be correct in her warnings about the pill and HRT. Not that that kept the NY Times from smearing her in its obit (she died just a few months ago).

There's far too many comments here to reply to them all, though I think some of hilzoy's later posts get at what I was trying to say, perhaps inartfully.

How might narratives help us here? Well, for example, if we didn't have a lot of people telling a lot of other people -- including physicians and scientists -- that profound, dramatic changes in their children's neurological development immediately followed the administration of vaccines, it's far from likely we would have even begun studying the subject.

So, we listen to a lot of people who are frightened, angry, and who are dealing with some profoundly difficult impairments that their children seem to have developed. Of course, the perceived conjunction could be simply correlation (post hoc ergo propter hoc, etc.), as I think my post makes painfully clear. But without actually listening to these people, it's dubious we would have even begun to investigate whether the correlations are just that, or whether they are something quite more.

This latter question remains to be determined. We have definitively ruled out thimerosol as a causal agent of virtually anything. Excellent. But medical causation, as I discuss in my post, is an extremely tricky concept. For multifactorial, complex illnesses that we barely understand -- like autism -- trying to figure out what are the myriad possible causal influences is inordinately difficult.

So, we're trying to figure it out, as well we should. And if rigorous analysis demonstrates that the stories people have told linking vaccines to these profound developmental changes are simply another case of the awesome pattern recognition capabilities of the human mind (i.e., mistaking correlation for causation), all well and good.

But we can hardly presume at this point that these stories are hogwash, because we simply don't know. And we don't know because we are only beginning to investigate this. And IMO, it is very unlikely we would even be investigating the issue unless we had begun -- finally -- to actually pay attention to what these people's stories of illness actually are saying.

hilzoy, I certainly did not mean to suggest that narrative evidence would be definitive on this point. That's absurd, and if my language conveyed that, that is my mistake. My point was simply that we should probably continue to listen to the stories, and to take them seriously, and to follow through on actually investigating the epidemiology. They may turn out to be wrong, and that's great, but that doesn't mean there is no value in actually paying attention to these stories.

With decent regularity in the history of medicine and public health, these narratives have been absolutely right even while well-intentioned scientists and physicians have insisted upon their wrongness.

Respectfully, I think a lot of interlocutors on this thread are lumping me in with anti-vaccination proponents simply because I suggest it might be important to actually acknowledge that there is a great deal we still do not know about the possible link between vaccines and illness. I am not nor have I ever suggested that it is wise for an individual to avoid vaccinating, nor that it makes for sound policy. But I absolutely think that public health policymakers who utterly ignore the illness narratives of those whom they intend to govern do so at their peril, and that failing to actually hear the stories makes for terrible health policy.

Health Affairs has a "Narrative Matters" column they've been running for years; there's more than a few articles on the role of narrative for health policy. No one, including me, remotely suggests that narrative evidence is an adequate substitute for RCTs. But nor can RCTs capture all that we might want to understand about how humans experience health and illness, including measures of health and illness brought about through vaccines.

"Gary, I think I have two books on my shelves on that subject, but am not finding them at the moment."

To be clearer than I was, I meant as regards medical information, not other kinds of narratives or information, Bruce. Though any info is apt to be interesting, to be sure.

"...I suggest it might be important to actually acknowledge that there is a great deal we still do not know about the possible link between vaccines and illness."

I acknowledge that.

Now what should I do? Now what should we all do?

Other than get kids vaccinated, and fund promising research?

I just want to point out that the piling on on the thimerosal hypothesis is a bit unfair. The reason the linkage was proposed was that mercury poisoning and autism share a number of symptoms, so the undercurrent of 'god, how ignorant can people be' ignores the good reasons for thinking that there was a causal link. Further, the disproof of the causal link is based on when thimerosal was taken off the market, but there was a rider in the law that allowed drug companies to sell of their previously thimerosal based stock, and it is not clear how long it was being used. Furthermore, while studies showed that single vaccinations were evidently harmless, this did not take into account the administration of multiple vaccinations that upped the count.

Unfortunately, the general narrative of medical science is 'of course we are right, and anyone is stupid to think we aren't'. Given that pharmaceutical companies are often less than forthcoming with data that might have an adverse effect on their profits, anti-thimerosal groups should not be treated as idiots because they are having difficult letting go of a hypothesis, especially when the power imbalance as well as the deeply disturbing aspects of autism are figured in. That Obama and Clinton soft shoe this rather than confronting them, in the midst of a strongly contested primary contests, is unsurprising and might be said to represent more empathy than ignorance.

I just want to point out that the piling on on the thimerosal hypothesis is a bit unfair. The reason the linkage was proposed was that mercury poisoning and autism share a number of symptoms, so the undercurrent of 'god, how ignorant can people be' ignores the good reasons for thinking that there was a causal link.

I'm not criticizing people who were concerned 5 years ago: I'm criticizing people who were concerned AND insisted that they were certain thimserosol was THE problem. In other words, people who said "we need to investigate this": not a problem. People who said "I'm absolutely certain and if you don't agree with me then you're in on the conspiracy": problem.

Further, the disproof of the causal link is based on when thimerosal was taken off the market, but there was a rider in the law that allowed drug companies to sell of their previously thimerosal based stock, and it is not clear how long it was being used.

It has been a decade. I think we're well past the time limit for how long we can plausibly expect vaccination practices to keep vaccines manufactured in 1999 around and in use.

Furthermore, while studies showed that single vaccinations were evidently harmless, this did not take into account the administration of multiple vaccinations that upped the count.

I don't believe this is true. Can you give a cite please?

Unfortunately, the general narrative of medical science is 'of course we are right, and anyone is stupid to think we aren't'.

I freely admit that I have a poor opinion of the average person's ability to deal with medical science properly. My uncle does pediatric neurology and now insists that parents bring the bottle of pills with them to followup visits when he writes a prescription for their child's epilepsy. Shockingly often, parents will show up at the follow up visit and berate him for his idiocy since their child's symptoms persist while holding in their hands a bottle of pills with an unbroken seal. They will then admit that they never gave their child a single pill before continuing to berate their physician. We're not talking about kids suffering from the common cold: we're talking about children that have experienced multiple seizures. This is serious stuff. So yes, lots of doctors are total jerks when it comes to believing in their own godhood. We should strongly criticize them as a result. On the flip side though, lots of people are really stupid patients.

Given that pharmaceutical companies are often less than forthcoming with data that might have an adverse effect on their profits...

Vaccines are not exactly Cialis; we're talking about a market that has high liability and fairly low profit margins. I'm unclear on what data you think the pharmaceutical companies are holding secret: can you be more specific?

That Obama and Clinton soft shoe this rather than confronting them, in the midst of a strongly contested primary contests, is unsurprising and might be said to represent more empathy than ignorance.

Empathy indeed. Do you think that these candidates will empathize much with the grieving families of children who died from whooping cough because their parents heard the candidates' statements? Because those families could really benefit from some empathy. They might also benefit from, you know, having their dead children be not dead.

There's far too many comments here to reply to them all

Given that Slarti, Gary, and myself are asking pretty much the same thing, I don't think you should feel the need to reply to all of us individually.

How might narratives help us here? Well, for example, if we didn't have a lot of people telling a lot of other people -- including physicians and scientists -- that profound, dramatic changes in their children's neurological development immediately followed the administration of vaccines, it's far from likely we would have even begun studying the subject.

But we did have people sharing the narratives and they are studying it. So...what's the problem here?

So, we listen to a lot of people who are frightened, angry, and who are dealing with some profoundly difficult impairments that their children seem to have developed. Of course, the perceived conjunction could be simply correlation (post hoc ergo propter hoc, etc.), as I think my post makes painfully clear.

I don't mean to offend, but your post makes very little clear. The language is artful and at times evocative, but it doesn't communicate well at all. I'm guessing based on your writing style that you are not an engineer or scientist and have no training in technical writing...am I correct?

But without actually listening to these people, it's dubious we would have even begun to investigate whether the correlations are just that, or whether they are something quite more.

A large chunk of medical research in this country is funded by the NIH. Even if not a single person listened to these parents, we would have gotten major autism research because millions of angry and terrified parents are a political force to be reckoned with.

Respectfully, I think a lot of interlocutors on this thread are lumping me in with anti-vaccination proponents simply because...

I'm not lumping you with anyone because I have no idea what you're trying to say. I've asked repeatedly and you still haven't answered, so I'll ask again:

1. What concrete steps do you want the government to take?

2. You said that reading the narrative evidence scared you: what was it specifically that scared you and how do you think that might improve medical research?

...I suggest it might be important to actually acknowledge that there is a great deal we still do not know about the possible link between vaccines and illness.

I acknowledge it. There is a great deal indeed. Now can you please answer my questions (see above). I would say that we don't fully understand the causation for the vast majority of illnesses. I'm not sure why that matters since I can't see how to go from that statement to a policy change...

But I absolutely think that public health policymakers who utterly ignore the illness narratives of those whom they intend to govern do so at their peril, and that failing to actually hear the stories makes for terrible health policy.

OK, what are you talking about? Which "public health policymakers" do you believe have ignored the narratives? What specifically about the narratives do you think has been ignored? What percentage of their day do you feel public health policymakers should spend reviewing these narratives? Why do you think reviewing said narratives is more important than their current work assignments?

Hi Turb,
Here's a quick cite, though I'm at school between classes, so I'll try and come back and give you some more information, From the link:

In 1999, the Food and Drug Administration (FDA) asked vaccine manufacturers to remove thimerosal, a preservative that contains mercury, from all the vaccines that are routinely administered to children (see Health-Facts, 10/99). While vaccines have contained tiny amounts of mercury ever since the 1930s, thimerosal became an issue several years ago because number of childhood vaccinations had increased dramatically. A newborn baby will now have as many as 20 vaccinations in the first two years of life. Often three or more are administered at one time.

This article also details some of the points about Eli Lilly. It was only after a long period of time that it was admitted that no safe threshold had been determined for infants and newborns. Again, I'm not saying that the articles is ironclad, but a number of those points have been repeated in things that I have read elsewhere and it does not surprise me that a single study done in the 30's was utilized as proof of thimerasol's non-toxicity.

I have to admit, I am a lot more sympathetic to this because living a hour away from Minamata and teaching at a school that is working in Minamata studies, I think that the triumphal nature of a lot of people about the exoneration of thimerasol gets under my skin a bit. Of course, this is merely a personal thing and shouldn't be considered as data, but it kinda lets you know why I am willing to look at this a lot more sympathetically.


Ahh crap, unclosed tags. Here is the wikipedia article on Minamata disease

What encouraged an anti-vaccine sentiment was the awareness that thimerosal was used as a preservative with no knowledge as to whether or not the injection of this small amount of mercury in infants was safe. For the average person who cannot possibly follow all of the ins and outs on such issues, they have to rely on trust in the medical establishment to adopt safe practices. That trust gets shook when people learn that mercury was being injected into small infants without anyone assessing whether or not that was a safe practice.

The speculation that it could contribute to autism seems to be without any
basis, but the last time I read up on this, thimerosal use has been withdrawn for the simple reason that no one can say that its use as a preservative in vaccines was safe. Teh elimination of the one potential harm does not them make thimerosal safe, nor invalidate concerns that it should not be used.

And the use of thimerosal with little thought to the advisability of using mercury as a preservative in vaccines did more to contribute to fear about vaccinations than unfounded speculation about autism.

Vaccines are risky things that make sense because of the cost-benefit analysis, but its unsettling to find out that additional risks are being added without much care being taken.

I took that as a hint, and freed your posts

Thanks Hilzoy! I can’t figure it out anymore. I’m having 2 sentence comments with no links get stuck of late. I assume I did something to make it mad but I’m not sure if I have to sacrifice a chicken or what to appease it.

When my oldest boy was born (he is now nine) I read a lot about vaccinations. In the Netherlands we have a biblebelt where people on the whole don't vaccinate (it isn't obligatory) and we have a government institute that makes vaccines. There's another government institute that monitors and does cost-effectiveness analysis and does recommendations.

In our last measles epidemic about 3250 people in the Bible Belt got ill. Lots got antibiotics for postmeasles pneumonia, lots got hospitalized and 3 died. People too often think that measles is a rather innocent childrens disease.

Measles without mention of complication (39%) and postmeasles pneumonia (33%) were most often registered as main discharge diagnoses for the 130 cases in the National Medical Registration. Forty-seven (96%) of the 49 patients whose hospital charts were reviewed were not vaccinated. Median admission period was 5 (range, 1 to 26) days, 19 (38%) required mechanical ventilation and 14 (29%) had sequelae at the time of discharge but none was permanent. Three patients died as a result of complications. No association was observed between preexisting illness and either reason for admission (P = 0.5) or residual symptoms at discharge (P = 0.5). The estimated total number of hospitalized measles patients was 157 (95% confidence interval, 145 to 179), leading to an estimated 825 admission days during an epidemic in which 3,292 cases were reported.

In view of the number of articles, education days & support organizations for (orthodox) reformed people it is clear that there is a high 'autism awareness' there too.

Well, for example, if we didn't have a lot of people telling a lot of other people -- including physicians and scientists -- that profound, dramatic changes in their children's neurological development immediately followed the administration of vaccines, it's far from likely we would have even begun studying the subject.

These bits of narrative, though, don't necessarily mean anything significant. Many childhood neurological disorders don't manifest until later in child development, at which point the parent notices that their child really ought to be doing this or that, but isn't, yet.

Ex post facto doesn't necessarily show causation, in other words.

As for the thimerosal piling-on, I'm completely agnostic about thimerosal. I just think that, for instance, one of the major perceived risks with thimerosal is the relatively large amount of it injected in the first few months after birth, which precedes much of the observable neurological development.

So, while I agree with much of what hilzoy has to say in support of narrative evidence, I think that that evidence is useful in these kinds of cases to the extent that data can be extracted from it, or that said narrative can be reduced down to something correlatable to the data. There has to be a methodology for using the narrative.

I'd like to mention that I use this kind of narrative all the time (not medically, but I think much of this applies to medicine), but it's more of a tool to focus the analysis than a direct contributor to identification and resolution of problems. I spent about two months working through why some of my code wasn't working in flight, and it led to me reinventing the wheel, so to speak, relative to some more obscure aspects of navigation. One of my key assumptions was wrong, and it was only because we were doing something, on a regular basis that almost no one else ever does, that this problem was cropping up.

Narrative evidence eventually has to hook into something real, tangible and verifiable, in other words. I was able to pick some dimensions from some drawings, do some hand calculations, change my code just a bit to correct for the effect, and it worked. That's verification, for you.

Interesting stuff, Slarti. I think how narratives hook into data becomes the big question. Some people can utilize a narrative in different ways, and having a variety of narratives gives people different tools. There are a lot of sharp people out there working on discovering the causes of autism, and the insistence that thimerosal has been proven benign functions as a way of putting all those smart people on the same train. However, in doing that, they may not be going in the right direction. Here's a link about how the seemingly ironclad disproof of the thimerosal-autism link may not be the case. And this next link, I am a bit hesitant, because it is via WorldNetDaily, and lauds Dan Burton, but the discussion of the mismatching of the package insert and the contents, as well as the reason why thimerosal is used, is the information related to the exposure of the pharma manufacturers. I also want to give a link to SAFEMINDS, which has this very current link to this.

I did a lot of reading about all this when my first daughter was due to get her vaccinations, and so a lot of my knowledge is potentially out of date. But re-looking at all this again makes me less rather than more certain about it all.

Interesting.

I'd guess where you'd want to start is examination of what hypothesis is being nullified, and whether the data being collected in fact nullifies that particular hypothesis, or simply one that looks similar.

For instance, if the hypothesis is: vaccines containing thimerosal cause autism in some particular cases and what's being actually negated is vaccines containing thimerosal cause autism in a statistically significant number of cases, there's something wrong.

All that aside, I'm completely open to the notion that there are in fact some (relatively small, percentage-wise) number of people who are affected by thimerosal in a way that's subtly or even markedly different from the rest of the population. I can't begin to imagine how you'd find that out, though. And certainly, as has been pointed out more than once upthread, there are health risks associated with NOT vaccinating, so you have to weight the risk in aggregate with the information you have, until you have better information.

There aren't any guarantees; you have to manage your risk as best you can.

Dear Hilzoy,

Would it be possible for you to please edit your post's quotation of the audiovisual transcript slightly, so as to insert "[pointing to person in crowd]" right after "including this person"?

Otherwise readers are likely to assume that "this person" refers to Obama himself -- that's what I assumed on first reading. Watching the video, however, it becomes clear from his gesture and from the crowd's laughter that he is referencing someone who has just spoken. (Given this situation, his description of the evidence as "inconclusive" thus makes sense as acknowledging, rather than directly invalidating, the perspective of his interlocutors -- a move I see as consistent with Obama's community organizing background and its speech norms.)

The video is available at:
http://blog.washingtonpost.com/fact-checker/2008/04/dr_obama_and_dr_mccain.html#more

Would it be possible for you to please edit your post's quotation of the audiovisual transcript slightly, so as to insert "[pointing to person in crowd]" right after "including this person"?

Otherwise readers are likely to assume that "this person" refers to Obama himself -- that's what I assumed on first reading.

Not having seen the video, if this is true, I second the point: I certainly read the quote as reading what it says: that Obama was referring to himself. If that's not the case, this post is seriously misleading to all of us who read what's written, which has no clue whatever that he's not referring to himself.

If this is true, than the whole quote turns from problematic into anodyne, and makes this entire thread pretty pointless, IMO.

So that would have been good to know in the first place.

It’s a valid point. A more accurate transcript would be:

“There are some people who are suspicious that it's connected to the vaccines and triggers... ah, but… this person included… ah, ah, the science right now is inconclusive, but we have to research it.”

His train of thought was interrupted as he thought to point the person out. It goes:

“Ah, but…” [pause]
[During pause he clearly looks to his right, and then points to his right.]
“This person included.” [continues…]

Also note that rather than the original transcript:
“Some people are suspicious that it's connected to the vaccines.”

What he says is:
There are some people who are suspicious that it's connected to the vaccines and triggers...”

It’s clearer with a correct transcript:
There are some people who are suspicious… here is one of them right here.

Not your bad hilzoy – you relied on the transcript. The site with the bad transcript is ironically called “The Fact Checker”.

That doesn’t change the fact that he goes on to claim that, “The science right now is inconclusive”.

glasgowtremontaine: thanks a lot for bringing this to my attention: the update with the video wasn't there when I wrote this, and it changes a lot. I've updated accordingly.

Hilzoy – This is just one more example of why you are the darling of the blogosphere. Confronted with contrary evidence? Examine and evaluate – if true – update post.

Wow - that seems so simple. But so many bloggers have trouble with that. I know it gets old telling you how you are my favorite… And I’m still trying to get my thoughts around how honest (yet right) you are on every level. “You are the best” seems inadequate.

So, we're trying to figure it out, as well we should. And if rigorous analysis demonstrates that the stories people have told linking vaccines to these profound developmental changes are simply another case of the awesome pattern recognition capabilities of the human mind (i.e., mistaking correlation for causation), all well and good.

But we can hardly presume at this point that these stories are hogwash, because we simply don't know. And we don't know because we are only beginning to investigate this.

This is categorically false. Look at http://en.wikipedia.org/wiki/MMR_vaccine_controversy#Recent_studies>this Wikipedia article for a pretty good summary of the recent research. There was one study done in 1998 by Wakefield et al. that posited a possible connection between the MMR vaccine and autistic enterocolitis. Since then, there have been about 20 studies done, published in respected medical journals, that have found no link between autism and the MMR vaccine. There have been cohort studies, studies on the posited mechanism of autism causation, and a study in Japan that looked at autism diagnosis before and after the MMR vaccine was discontinued.

In addition, after a conflict of interest disclosure on the part of Dr. Wakefield, 10 of the 12 authors removed their names from the conclusion of the original paper.

In short, there is a slew of scientific evidence. The question is settled.

And IMO, it is very unlikely we would even be investigating the issue unless we had begun -- finally -- to actually pay attention to what these people's stories of illness actually are saying.

I mean no offense, but stories are the absolute worst place to look for evidence of any kind. Perhaps they can suggest places to start research, but that's about it. We're still sinking money into this already-disproved hypothesis while other research could be done to investigate the actual causes of autism.

OT:if I see that same thing and describe it in such a way that what I saw is clear to people who know ants, and I am credible, same deal.

The San Diego Zoo had noticed that there had been an increase in blue pillbugs in the area. They encouraged anyone who saw a pillbug to call and tell them the color. I called in my blue pillbug and was thanked for the data.

On Topic:The truth is, anti-vax has a movement and they've got marketing.

Other than this business with autism, I'd never heard of or known of the anti-vax movement. What are their goals -- to do away with all vaccines? That seems pointless and stupid -- not that that's ever stopped a movement before.

In short, there is a slew of scientific evidence. The question is settled.

Again, this is just from trawling the web, as my kids have already gotten their vaccinations, and I haven't looked at it, but the recent Hannah Poling case suggests otherwise. I realize that the court is not the best place to determine the weight of scientific evidence, but it does seem to make the question seem less settled. Especially if, as the article states, the family is willing to unseal the records, but the government and the pharma companies are not.

I meant to include this opposing link with arguments against, just for balance.

Geez, I am having problems this am. Go to the middle of the comment section for comments by Jon Poling, father of Hannah and a medical researcher.

Regarding Hannah Poling, see http://www.sciencebasedmedicine.org/?p=66>here for an in-depth discussion/debunking. The short version is that a settlement did not require a scientific standard of evidence and in any case the government said nothing about whether vaccines cause autism. Poling had an incredibly rare genetic disorder, and was diagnosed with regressive encephalopathy with some ASD-like features. It's unclear whether she had autism or not.

Moreover, the kind of mitochondrial disorder that Poling had leaves its victims extremely vulnerable to diseases like measles--the disease would probably land them in the ICU and possibly dead, so it is still recommended that children with this disorder get the vaccines (unless there is a history of negative reactions--which is true for the public as well).

As Gorski said, "The bottom line is that it is fever from any source, be it a vaccine reaction or, more commonly, an infection that can exacerbate mitochondrial disorders and provoke encephalopathy. Moreover, because of the confounding factor of multiple ear infections, it’s not 100% clear that Hannah’s vaccinations even caused her regression, although it is certainly possible."

The point stands. The science is settled.

"I realize that the court is not the best place to determine the weight of scientific evidence, but it does seem to make the question seem less settled. Especially if, as the article states, the family is willing to unseal the records, but the government and the pharma companies are not."

I can't agree, see for example silicone breast implant lawsuits. The science there was excellent, but Dow Corning was driven into bankruptcy.

OCSteve: it's easy, since I have such generous commenters. ;)

Otherwise: "But we can hardly presume at this point that these stories are hogwash..."

I'm assuming (for the moment, absent any knowledge of which stories are under discussion) that they are true. The thing is, they could only establish correlation. It's the studies that would have to establish causation. But the stories themselves -- i.e., the story of someone getting vaccinated and then being diagnosed with autism -- wouldn't be hogwash even if there were no causation at all.

About the Poling case: SciAm just ran a piece here. It makes it sound as though the vaccine's role might have been just to cause a fever:

"John Shoffner, a mitochondrial disease expert who runs a laboratory in Atlanta, agrees. In at study of 40 patients with autism—including Poling, he found that two thirds had muscle weakness. If muscle weakness is seen early on in children, it may be a tip-off to an underlying mitochondrial disorder that could cause autism, because muscles are heavily dependent on mitochondria as an energy source. He also believes that the new work—he presented preliminary results last week at the American Academy of Neurology Conference in Chicago—will help explain why some children, such as Poling, experience worsening symptoms as a result of a fever.

He notes that the route from the vaccine to the child's autism was by no means direct. Hannah's mitochondria were already underperforming, so when she developed a fever from her vaccine, the increased energy requirements likely pushed them past their thresholds. A fever caused by an ear infection or the flu would likely have triggered the autism symptoms if they occurred before or between the ages of 24 and 36 months, he says, which is when classic, regressive autism, which affects one third of sufferers, usually appears."

On Topic: It seems simple to me. Having no kids in this game – I could go either way. IF I had a kid, I would damned sure vaccinate them. Anything else seems dumb. Playing percentages is for Blackjack in Vegas.

Not for kids...

OCSteve: yep. Also, it's playing percentages with other people's kids as well. (Both kids whose parents chose not to vaccinate them and kids who are too little to get vaccinated, but who are old enough to have lost the immunity babies get from their mothers.) So even more badness.

Just one more coin to toss in the pool:
A certain percentage of kids who are vaccinated contract the disease covered by the vaccination *anyway* (for some diseases and vaccinations). This is part of the reason polio vaccinations are not using the oral vaccine any more, even though the public health benefits of using the oral vaccine are quite large. The only statistic I remember quite well on this phenomenon is that 1 in 3,000 kids who receive the MMR vaccine contract measles, because my daughter got measles from her MMR. She was very sick for a week, and I remember thinking, "Thank God she got this from a vaccine, because it probably would have been worse if she had picked up the real thing somewhere." And even though I was very frightened for her before the fever broke, I was more determined than ever that she would get all her immunizations. In a way, I can understand people who choose not to vaccinate their children, because vaccination does have risks. But then, so do a lot of things, and while non-vaxers are looking just at one end (protecting their kids against potential harm from a medical treatment), they are ignoring the much greater potential harm to their kids because they are not protected from disease, as well as much greater potential harm to the other kids in the community from catching the disease from non-vaxer kids.

I think people old enough to remember polio generally look at non-vaxers as if they're nuts. I know my mom would have taken some pretty drastic steps if I had proposed not vaccinating my kids, seeing as how her brother and her fiance' both died of polio.

Organized anti-vaccination campaigns are as old as conscious* vaccinations themselves.
There were two main factions:
1.the religious one: Deliberately infecting someone with a disease is evil but no evil can be justified even as means to a good end (the Catholic position); also, since diseases are the will of G#d, it is blasphemous to try to eliminate them**
2.the "reasonable" one: The first vaccination (smallpox) carried a real risk of fatal side effects and there were a lot of people in the business for the profit but without proper training. So, there were reasonable suspicions/doubts about mandatory vaccinations. Since few were/are able to do an informed cost-benefit analysis it was a field ripe for exploitation.
Myself I trust the family doctor to tell me what vaccinations are essential/useful/doubtful/not recommendable
and regularly ask, which need refreshing.

*there were some local customs in the world before that effectively worked as vaccinations, although those doing them did not know it.
**for the same reason drugs against STDs were condemned by many denominations.

it's playing percentages with other people's kids as well. (Both kids whose parents chose not to vaccinate them and kids who are too little to get vaccinated, but who are old enough to have lost the immunity babies get from their mothers.) So even more badness.

Vaccination in the Netherlands starts at 2 months, to make sure they are vaccinated before the immunity from mom disappears. But I have friends with very vulnerable kids (illness, transplant receivers) who depend on 'herd immunity' because they cannot be vaccinated themselves.

The only statistic I remember quite well on this phenomenon is that 1 in 3,000 kids who receive the MMR vaccine contract measles, because my daughter got measles from her MMR.

That is the first time I read that. We are warned that kids may become ill 5-12 days after the MMR, because it is a life vaccine. But they usually don't get the fullblown measles, no spots or anything. In our measles epidemic no-one who had full immunisation (all three vacs, incl. vaccinations when 4 and 9 years old) got the disease.

Sorry I departed from the conversation for awhile there, but some pressing obligations called.

Let's go back to what prompted my initial comments to hilzoy.

She suggested it was irresponsible for Clinton to say what she did (pace update) because the science is conclusive. I suggested this leaves a number of things out, not least of which is the notion that the science is not conclusive on the potential causal contributions between vaccines and any number of developmental disorders, including but not limited to autism, in large part because we've only really begun to look at the issue closely.

In turn, it seems difficult to me to contest the notion that we would be unlikely to have begun investigating the possible connections if we had not -- only after many years of failing to listen -- finally begun to actually heed the stories of those who perceived some connection between vaccination and sometimes severe childhood illness.

Now, let's be clear on what I am NOT suggesting, nor have I ever been suggesting in this thread:

(1) parents ought not vaccinate their children.

(2) public health policy should not strongly encourage if not mandate the full palette of evidence-based childhood vaccinations.

In fact, I was not making any policy prescription at all, despite the best efforts of some of the interlocutors to insist that I was doing so.

Neither did I ever suggest or imply that we should ignore robust epidemiologic and scientific evidence in favor of stories to the contrary.

What was my point?

First, that we should not confuse epistemology with ontology. We have eliminated from consideration the notion that thimerasol causes virtually any illness at all. Excellent. Now we should move on to consider other possible causal associations, and rule them out as well, within generally accepted scientific standards.

To conclude from the available body of evidence that we have conclusively demonstrated the lack of any causal link between vaccines and developmental disorders is totally fallacious (thus, Russell, I most certainly disagree with you on this point). We have not. So, let's try to do so. And one of the reasons it seems important to do so is because of the great many stories we continue to hear about the perceived links between vaccinations and such illnesses; as well as the point, perhaps lost in the comments above, that dmbeaster makes about our apparent willingness to include biological compounds in vaccines without appropriately vetting them for safety beforehand.

I'm not sure why these points have generated such dispute in the comments here.

Finally, Turbulence, there is little that is more annoying than when an interlocutor insists you have not answered a question you have in fact answered multiple times simply because your interlocutor does not like the answer.

Specifically, you ask:

I'm not lumping you with anyone because I have no idea what you're trying to say. I've asked repeatedly and you still haven't answered, so I'll ask again:

1. What concrete steps do you want the government to take?

My original cited blog post, which I continue to suspect you have not read carefully, makes crystal clear that I was NOT endorsing any individual or policy decision to avoid vaccination.

Moreover, since when is it a requirement to comment here that I have to endorse a particular policy?

Indeed, my point from the very beginning has been that while I totally agree with the policy position I think hilzoy is taking, I think her short post on the subject leaves out much of importance regarding the significant uncertainty on the links, IF ANY, between vaccines and illness, and suggests that the science on the matter is conclusive, which I do not think it is.

You may or may not disagree. But that is not equivalent to suggesting I have not answered the question.

2. You said that reading the narrative evidence scared you: what was it specifically that scared you and how do you think that might improve medical research?

I've also answered this ten ways from Sunday. Narratives = stories people tell. Lots of people have told lots of stories evidencing a strong temporal connection between vaccination and profound and devastating developmental changes their children underwent.

Is it really difficult for you to understand why this might frighten a new parent?

Are you also seriously asking me how paying attention to these stories might improve medical research?

I answered this here:

How might narratives help us here? Well, for example, if we didn't have a lot of people telling a lot of other people -- including physicians and scientists -- that profound, dramatic changes in their children's neurological development immediately followed the administration of vaccines, it's far from likely we would have even begun studying the subject.

So, we listen to a lot of people who are frightened, angry, and who are dealing with some profoundly difficult impairments that their children seem to have developed. Of course, the perceived conjunction could be simply correlation (post hoc ergo propter hoc, etc.), as I think my post makes painfully clear. But without actually listening to these people, it's dubious we would have even begun to investigate whether the correlations are just that, or whether they are something quite more.

So, my point is that we should not pretense to a mythical epidemiologic certainty which we absolutely have not achieved (again, my disagreement with Russell is more substantive), we should continue to actually listen to those whose lives have been affected by these developmental disorders, and we should continue to conduct the best and most rigorous analysis of whether these narratives hint at a causal association or are simply post hoc reasoning.

You say:

OK, what are you talking about? Which "public health policymakers" do you believe have ignored the narratives? What specifically about the narratives do you think has been ignored? What percentage of their day do you feel public health policymakers should spend reviewing these narratives? Why do you think reviewing said narratives is more important than their current work assignments?

Dude. Are you joking? Read the freaking literature on this subject, which is extensive. Or email me, and Id be happy to provide some citations. This comment is neither an appropriate nor an adequate fora for providing a detailed and thoughtful analysis of the proper role of narrative in health policy.

Your questions about my background are answered on my weblog (I'm a lawyer as well as a doctoral student in the medical humanities, and am a health policy fellow at an academic medical center). What great relevance my background has to my capacity to weigh in on these specific matters escapes me, unless you think such discourse should be limited to those with scientific expertise, which is an argument so absurd I barely know where to begin. So I'll be charitable and assume that is not at all what you meant.

In any case, I tend to think I've made my points perfectly clear to you; you just happen to disagree with many of them, which is just peachy.

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Whatnot


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