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autism-vaccine link?

Gee, Skeptigirl, you seemed to pile on right after I did. Way to go!

I've also been amused by the credulous idiots posting on http://scienceblogs.com/insolence/2008/02/is_bill_maher_really_that_ignorant_part_3.php ...

Oh, wow, a couple of them have tried to tell us the Rebecca Carley theories on the immune system (she lost her medical license, and is often quoted by anti-vaxers). One tried to tell me that ibuprofen is a narcotic.

Anyway, carry on.
 
skeptigirl said:
What misconception do you have about what I am suggesting that would make you reply like this?
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It probably started with the statement I already quoted above:

"Science needs a voice that is as loud as a heartbroken and/or angry parent."

Why should we ignore the science of communication in this endeavor?
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I'm not suggesting that we ignore the science of communication. Nor, if it were proposed that this is as much art as science, would I suggest that we ignore the art of communication. I'm merely suggesting that becoming "as loud as a heartbroken and/or angry parent" may not represent either in its highest form. There seems to me to be an inherent contradiction in using emotion to inspire people to think logically.

What do you think I am suggesting? That we take a Bill Nye the Science Guy approach to vaccine information dissemination?
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That's an idea. The Carl Sagan approach might be another. I suppose Bill Nye might be described as "loud" at times, but I don't know that either of them ever really came across as "angry". What I do know is that once one becomes frustrated, one does tend to become angry. And loud. And those who might otherwise have been amenable to the message tend to quit listening, leaving an audience composed entirely of those whose minds aren't going to be changed no matter what.

A lot of time, energy, and money is dedicated to effectively communicating the benefits of immunization. Some of the folks involved in this work are highly trained and thoroughly experienced in the art/science of risk communication. If you have specific recommendations about how they might do their work more effectively, I'm sure we'd all be glad to hear them, but all I'm hearing so far is frustration. Not that I can't relate to that, of course.
 
Dymanic said:
A lot of time, energy, and money is dedicated to effectively communicating the benefits of immunization. Some of the folks involved in this work are highly trained and thoroughly experienced in the art/science of risk communication.
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Do you have any sources for that information?

Who are these people? Where are their publications?
 
robinson said:
Do you have any sources for that information?

Who are these people? Where are their publications?
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Here we go again...

Robinson, are you actually going to read the info, or are you going to do your standard bit of anti-vaccination & anti-mercury woo? You know, the one where you ask for medical evidence that vaccines are effective, it's shown to you, then you ignore it, and eventually you lie and claim it was never shown in the first place...?

It's all right here in the old "ABC show prepetuates autism/vaccine link" on post #214.

And he gets called out on his lies on post #218.

What's the strategy then? Jump onto another anti-vaccination thread and start all over again... :rolleyes:
 
Dymanic said:
I don't think even that much is entirely clear. She developed several symptoms consistent with ASD, enough to meet the official diagnostic criteria. What is autism, other than the manifestation of those symptoms? I don't think there are any good answers to that as yet -- but if it's a mitochondrial disorder, then it's way overdiagnosed.
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It did say she had a pre-existing mitochondrial disorder that seems to have worsened (at the age of 9) when she had the vaccines. Apparently the worsening of her pre-existing condition included these autism-like symptoms.

At any rate, I see nothing in the CNN article that supports the headline (that the vaccine-autism connection debate is renewed by this case).
 
JoeTheJuggler said:
....

At any rate, I see nothing in the CNN article that supports the headline (that the vaccine-autism connection debate is renewed by this case).
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It is not. You are correct, that this case has nothing to do with vaccines causing autism.

Apparently any fever could have caused the aggravation of the mito. It just so happens that vaccines can cause fevers, so they caused the problems. Hence the payment.

It has nothing to do with autism, or the general safety of vaccines. Mitochondrial disorders are relatively rare, so this does not apply to the general population.
 
The kid didn't have autism, it was a mitochondrial disorder. No word on exactly how any vaccine could have possibly worsened the kid's condition.

Doesn't matter. The news headlines have already started saying this case proves the autism-vaccine "link"/conspiracy theory. They are now lumping her condition under ASD and going on and on...

http://www.ajc.com/metro/content/health/stories/2008/03/06/autism_0306.html

Same headlines in my local news. They are talking about 19 months of age too, not 9 years. What's up?
 
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Dymanic said:
....
A lot of time, energy, and money is dedicated to effectively communicating the benefits of immunization. Some of the folks involved in this work are highly trained and thoroughly experienced in the art/science of risk communication. If you have specific recommendations about how they might do their work more effectively, I'm sure we'd all be glad to hear them, but all I'm hearing so far is frustration. Not that I can't relate to that, of course.
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Actually, now that you mention it, I do.

This has been my area of interest for years. It started when I evaluated an employee training program to improve compliance with a policy I implemented for the employee blood exposure protocol. After 6 months, not a single objective parameter improved. Source patients were still being discharged before blood was drawn. Employees still did not take the correct actions after exposures. Proper documentation and notification of the appropriate people did not improve. And as I explained my frustration to one of our nurse educators she made a simple observation that hadn't dawned on me. She said it was not a knowledge deficit, it was a performance deficit.

That may be a no brainer to educators. The significance may be lost to many skeptics and other professionals. But it was an "aha!" moment for me. You have to assess the reason people are not interested in the scientific evidence. You cannot assume they simply are not aware of the facts. If you think it is a mere knowledge deficit, you will do as I did, educate educate educate. And then wonder why nothing changed.

Risk communication is a start. An important start to be sure. It was the beginning of recognizing people had to perceive the infections as a risk if they were to value vaccines. But as we attempt to communicate risk, it is apparent just providing the knowledge of real risk vs perceived risk is not enough. Even looking at all the underlying factors of risk perception is not enough. If it were, we'd be there by now. Risk perception and risk communication is now over 2 decades along in study. It is time to take the next step in analyzing the underlying problem.

We have to look at the role the media is playing here. This single legal action has undone years of work convincing parents the vaccines are safe and the diseases are a risk.

In the case of the anti-vaxer problems, news in the mainstream media is a commodity. News in the mainstream media is not a source of information or a source of facts. If the medical or scientific community is ever to effectively address the problem of misinformation about vaccines, we have to understand both, why the patients or parents prefer misinformation to evidence based information, and we have to understand how news as a profit generating commodity rather than an information source works.

At the moment I am looking at the underlying problem that the medical community is invisible. Either we are in on the big pharma conspiracy or we are too ignorant to evaluate the evidence or we simply do not exist. The anti-vaxers have to discount the existence of the medical community or buy the oversimplified absurd premise we are ALL in on it or ALL duped.

Here is a post of mine in Orac's blog that is an example of what I am talking about.

Posted by: Monica Thanks to people like Barabara Fisher, ... Thanks to parents of immune deficient children who contracted polio from the vaccine, ...

Why would the medical community need a suffering child or parent to lobby those health care providers to evaluate risks and benefits of a vaccine and choose the safest most effective options? Why would we not act when safer vaccines became available? What makes you think the medical community only acts when some suffering person brings something to our attention?

I've spent 8 years at a university and 30 years in practice. Do you think people like me sit around on our asses not caring in the least about our patients or the care we provide? Why would I spend so much time learning my profession and providing health care and then need a suffering person to lobby me to act responsibly? Do you trust a neurosurgeon to cut into your brain yet think that same medical provider would not evaluate the research on the safety of vaccines?

Why do you, with no medical education from the sound of your comments, think you have looked at vaccine safety but the the medical community hasn't? Do you think that we want to cure cancer and heart disease but while we are at it make a few bucks on the side hawking vaccines which result in needless misery for children and parents? Are you serious?


Posted by: Monica How is it we successfully eradicated polio, smallpox, etc, without vaccinating infants? These vaccines were given to older children, not infants.

You could not be any more ignorant of the facts here than this.


Posted by: Monica To think we cannot strive to improve safety is ignorant.

No, Monica. To imagine the medical community has no interest in improving care and safety is where the ignorance lies.


Posted by: Monica I do ask you this, can anyone find a study that shows how many children produce antibodies to the vaccines they received in our current schedule?
I am very interested because my child's immunologist stated that it is NOT abnormal for a child to not respond to vaccines, as the immune system is not mature until age 2. If this were true, then our vaccination program would be faulty, correct?
My child suffered an adverse reaction to either the MMR, or Varicella vaccines. She had encephalitis, seizures, fever, bulls eye rash.
We also discovered she didn't create antibodies to these live virus vacines, and may have some sort of immunodeficiency. That is where it gets tricky, one immunologist said immunodeficiency, based on the lack of antibody response to vaccines. The other said that the lack of antibosy response is typical, but I just don't feel this is true...

So you've taken your personal experience, the failure of the medical community to provide answers or treatment for your child and decided that every one of us are to blame? You have no answers so we must all be at fault? They didn't help your child so we all must not have tried hard enough?

I'd like to offer you empathy for your tragedy, whatever it is. But I'm not in the mood to take the blame you want to heap on me and my 30 years of dedicated practice doing the best job I could. I am a nurse practitioner and I am not making tons of money by any stretch. But I take great pride in my work and I, like most of my colleagues, feel an obligation to providing the best care we can.

Medicine has only been in the business of serious evidence based practice for the last 100 years. Of course we can't cure every patient and of course we don't understand every disease process. But to accuse us of not giving a ◊◊◊◊ is as ignorant as it gets.
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[side note]Some folks take the more tender approach of offering all the sympathy/empathy first to someone like this. I think that is a wonderful effective approach and I encourage it. But it isn't my particular style so I don't always go that route.[/side note]
 
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I think this problem may be summarized as:

Anecdote+Emotion > Evidence+Reason.

The ultimate answer to this problem is 'education', preferably starting at the earliest age possible, so people all believe and think the way you want them to.

For example, expose people to weakened forms of anti-vax arguments and provide pro-vax arguments which defeat them. Another tactic is to make the latest vaccine preventable disease sound worse than it typically is by highlighting the most severe cases (especially cute looking children who've died), and removing any context to make absolute risk assessment more difficult.
 
Skeptigirl, have you read this article? It seems to address what you are saying.

Abstract

We found that even parents favourable to vaccination can be confused by the ongoing debate, leading them to question their choices. Many parents lack basic knowledge of how vaccines work, and do not find the standard information provided to them to be particularly helpful in explaining it. Those with the greatest need to know about vaccination seem most vulnerable to confusing information. Opportunities for education may be missed if paediatricians do not appreciate parents’ specific information needs.
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Capsid said:
Skeptigirl, have you read this article?
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That looks very interesting. I don't suppose there is a free Internet link to the 30 in-depth mental models they speak of?

Someone at the skeptics meeting in Seattle the other day mentioned something about people becoming even more entrenched in misbelief when challenged. I was going to look into that when I got a chance as well.
 
It looks like the effect of the vaccines was non-specific, due to a febrile reaction, so avoiding vaccination wouldn't alter the risk. The same result could have been obtained from other insults (including contracting a vaccine-preventable disease ;)), it's just that other conditions don't have a compensation system associated with them (there's an idea, have anti-vaxxers put their money where their mouth is). And the description sounds like an uncommon, but well-recognized reaction to the Pertussis component, so it doesn't matter whether other vaccines were received at the same time. So basically, this case provides no new information on the issue of vaccine safety or the (non)association of vaccines and autism. If a car accident led to a hypoxic insult in utero and resulted in the birth of a child with cerebral palsy, would we be claiming that MVA's cause cerebral palsy?

Linda
 
If a car accident led to a hypoxic insult in utero and resulted in the birth of a child with cerebral palsy, would we be claiming that MVA's cause cerebral palsy?
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Why yes, of course. Send all claims for those "causes" of cerebral palsy to the car manufacturers, stat!

Oh, and while we're at it, we'll "blow up" the risk of cerebral palsy to get everyone concerned about it and not wanting to drive anymore if they are pregnant. As Ivor claimed, we already do this with vaccine preventable diseases anyways. Cuz noone ever needed an iron lung after getting polio anyways, and nobody has ever gotten encephalitis after contracting measles, etc.

And nevermind that rates of ASD never fell after thiomersal was removed. And nevermind that the rates of autism are still lower than rates of other diseases that cause funky brain degenerations after a person seemingly develops normally. Nevermind that we don't blame vaccines for these other degenerations.
 
skeptigirl said:
If the medical or scientific community is ever to effectively address the problem of misinformation about vaccines, we have to understand both, why the patients or parents prefer misinformation to evidence based information, and we have to understand how news as a profit generating commodity rather than an information source works.
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I submit that we know plenty about that already. Mainstream news is a branch of the entertainment industry. As you say, it's a no-brainer. Now what? What we have here isn't a knowledge deficit; it's a performance deficit. Even if we could wave some magic wand that would turn scientists into journalists (or journalists into scientists), it wouldn't matter as long as the audience remained scientifically illiterate. Most people are going to go with their gut most of the time, and most of them are going to prefer being well entertained over being well informed most of the time, and that's just the reality we're dealing with here.
 
On top of all the great points raised so far, the media's stoking and maintaining this non-existent "debate" on the safety of vaccines, I'd add another layer:

There's already stuff in the system (mostly economics) that discourage vaccine production. In other words, we should already be making policy decisions to encourage the production of vaccines (and the R & D for new ones), but this kind of slanted information (as for example, the CNN headline which is a complete lie) only makes a difficult situation even worse.
 
fls said:
It looks like the effect of the vaccines was non-specific, due to a febrile reaction, so avoiding vaccination wouldn't alter the risk. The same result could have been obtained from other insults (including contracting a vaccine-preventable disease ;)), it's just that other conditions don't have a compensation system associated with them (there's an idea, have anti-vaxxers put their money where their mouth is).
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Excellent point.

Even if the vaccine was the cause of the worsening of this girl's condition, a fair risk/benefit analysis should have to include how much worse it could've been if she'd gotten the vaccine-prevented disease. From a public-health point of view, I'd even advocate accepting some ill effects of vaccines in rare cases for the greater good of the community. Luckily, we don't have much of that to worry about.

There's so much misinformation! Most people I speak with about the flu vaccine tell me that they won't take it because they think it can give them the flu. :confused:
 
skeptigirl said:
......Here is a post of mine in Orac's blog that is an example of what I am talking about.


...
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I am actually suspecting that Monica was lying when she said "My child suffered an adverse reaction to either the MMR, or Varicella vaccines. She had encephalitis, seizures, fever, bulls eye rash."

Also she claimed that the polio vaccine is not given to infants.

Then she continues with "I find it sad that the ARNP and 2 pediatricians that have been treating my daughter did not know of VAERS, or how to report a reaction. My congressman suggested I do such a thing, and I provided the practice with the correct information."

Very odd, since vaccines are accompanied by Vaccine Information Sheets containing information on VAERS and VICP.

Something fishy is going on with Monica.
 
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Dymanic said:
I submit that we know plenty about that already. Mainstream news is a branch of the entertainment industry. As you say, it's a no-brainer. Now what? What we have here isn't a knowledge deficit; it's a performance deficit. Even if we could wave some magic wand that would turn scientists into journalists (or journalists into scientists), it wouldn't matter as long as the audience remained scientifically illiterate. Most people are going to go with their gut most of the time, and most of them are going to prefer being well entertained over being well informed most of the time, and that's just the reality we're dealing with here.
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Are you just venting some personal frustration or are you seriously suggesting we already know everything there is to know about communicating science and medical information to the public and no further approaches or analysis are going to matter?
 
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