Amy Wallace's Wired piece has taken on a life of its own, as has her twitter feed dealing with the letters she's received. I read one yesterday, as it wended its way through the 140 character hell of twitter and wondered if it was my friend Craig's story. I was catching up at AoA today and saw his post that it was indeed his story, only she hadn't dealt with the main point of his email.
By taking all the emails she receives and (I'm not saying she's doing this, who really knows?) and placing them into two piles: anti-vaxxers and not, she's not doing anything to address the very real fact that vaccine injuries do happen. Granted, that isn't the thrust of her article, which is that irrational fear of vaccines is putting all of us at risk (and it frakking is). The closest she comes to dealing with vaccine injuries is this: "Nobody in the pro-vaccine camp asserts that vaccines are risk-free, but the risks are minute in comparison to the alternative."
Yes, the risks are small in comparison, but they are real and being dismissive of that to the commenters who email her isn't the smartest way to handle it. It isn't. It alienates people when it really didn't have to. We need to acknowledge that there are those who get vaccinated and have a reaction, just like we need to do a better job of acknowledging the adverse events from medications. And we need to take seriously what we put into our bodies. We need to get vaccinated, aware of the small but real risk of an adverse event so that we can act quickly and proactively. We also need to be aware when we give our children medication that Stevens-Johnson Syndrome is a very real, very dangerous syndrome ( http://www.mayoclinic.com/health/stevens-johnson-syndrome/DS00940).
We don't need to panic, though. We don't need to do our imitation of Chicken Little. But we do need to be informed consumers. We need to be rational. We need to be just as wary of easy cures as we are of drawing conclusions about causation where all we have is correlation. Just because two events are temporally connected does not mean that one caused the other.
We should avoid absolutist language. Scientists use it as a shorthand but know that they aren't speaking of 100% absolutes; most keep that wiggle room in the back of their minds that is open to conflicting data and do so when listening to other scientists. This confuses the shit out of those who don't have that concept in mind, and they take the absolutist short hand as hard-core no-wiggle-room truth.
And when there are documented cases of children having vaccine injury and being diagnosed with autism, rather than being dismissive, we ought to look more closely. The scientific method needs data. Would the children who have documented vaccine injury have been diagnosed with autism regardless? Just to mention a couple cases: in the Cedillo case, it appears clear that the answer is yes; professionals testified that video footage prior to the vaccination that supposedly was at the heart of the Cedillo's case shows the child to be clearly autistic. It should be noted the Cedillo child has far more medical issues than just autism, as well. As does Polling.
Back to Craig. Craig's story is worth reading. And his points worth being truly listened to. He is not anti-vaccination. He doesn't go around inflating the risks, misinforming about the ingredients, or in general fear-mongering. He keeps some crappy company, though, so it ends up looking like he's anti-vax by asociation. Truly, unlike most at AoA, he is advocating more research into vaccine safety. He may do it with the swagger of a bully at times, and while I think the company he keeps is not the best, where's he more likely to find acceptance? Up until now, it's been at AoA.
However, Craig, having come across your comments at Orac's tonight (written predominantly Sunday night and tweaked this morning) while writing this, man, bud, you got a bee in your bonnet over Orac that doesn't let you see the hypocrisy of your response to him. The jackass whose first Wallace article involved intellectual rape gets a pass because you like him, but Orac doesn't because you don't? Yet the last time you commented to me here, it was to berate me for what you perceived to be hypocrisy? Seriously. Orac has never engaged in the overt nastiness your bud has time and time again. Admiring and emulating a bully, not good. It's important to stand up, stand against wrongs. That is so resoundingly not what this person does at all. To admire him is to want to be a member of the group not getting bullied. I have no respect for people who rally around a bully and cheer him on as he goes about terrorizing others. And you shouldn't either.
However, I digressed from what I was getting around to: Craig, if you read this, would you post your story here, your email to Amy Wallace, as well? Or give me permission to place it in the body of this post?
Reasoned debate and civil discourse means really listening to the people who offer their perspectives.
Much as I stand up and call out the woo, the misinformation, and the truly awful at AoA, I have never divided this into a black and white debate. There are very real cases of vaccine injuries and coinciding autism diagnoses. I support the science that resoundingly says these are coincidences, but I do not dismiss the individuals, like Craig, who have gone through the horrendous experience of having a child vaccinated and then hours later having their world upended because of an adverse event. And while it is always theoretically possible that something other than the vaccine caused the adverse event that Craig's son experienced, it is reasonable to assume, within several hours of the shot, with the conclusions the doctors drew, that this was a result from the vaccine. Don't know about the autism. Don't know whether his son would have been diagnosed as autistic had there not been an adverse event. Just like I don't have any way to distinguish my son's stroke damage from his autism and how different he'd be if he hadn't had the stroke.
Somehow there has to be a way to engage these individuals who have suffered from vaccine injurie with respect for their experiences, conduct research to identify likely triggers, and thereby be able to screen children before vaccination so that this doesn't happen to other families. If we blithely throw out individuals with experiences like Craig, leave them no place but the woo-hole and hate-fest that AoA is, then we are, at the very least, alienating the parents of the children we were trying to protect in the first place: those who cannot be safely vaccinated.
Does it mean not calling out the incredible stupid when I find it? Oh hell to the no. It just means trying very hard not to demonize those who say or believe something I find based on the evidence to be steeped, dipped, battered, fried in woo.
On a closing thought, Craig, that anger of yours impedes dealing with things. Gets in the way of communicating effectively to people you disagree with, but who might actually listen to you if you didn't go in both barrels blazing all the time. Louise had an excellent idea, write a blog, channel your emotions into communicating your story. I guarantee that if you stay over at the woo-fest and get that negativism reinforced, saunter over to Orac's to spew some more, and then head back to AoA, all you're going to do is keep dialing up the mad. And I'd like to think you're smarter than that.
You always have a soft spot to come post over here. You've got my ear, and we won't do any fear-mongering or hate-mongering. And we'll leave the damn monkey virus and demonization someplace else.
Craig's email to Amy Wallace:
"It took me a while to formulate this email because I don't want to come across as hostile. To say that I am disappointed in your article is a bit of an understatement, but I'm willing to engage you diplomatically in the hopes that you will understand where many parents like myself are coming from.
The reason why there is so much anger from parents who share my views is that we are tired of being ignored. Vaccine injuries do happen, and quite probably much more often than the CDC and Offit admit. Only 10% of all doctors report to VAERS, and most of the CDC's prevalence data about how often reactions occur are gleaned from VAERS. Scientists like Offit and many others like to paint parents like me as desperate. I've been called ignorant, stupid, liar, and all manner of horrible names because of my views. I'm a long way from being an idiot. But more of that later, because it ties into a later point.
Here's my story. My son was born in 2001. By the time he was 18 months old, he was bright, happy, funny. He could walk, spoke about 30 words, and was exceeding all developmental milestones. His final words to me were, "Go Bye Bye!" on the day of his 18 month checkup. That day, he received the MMR and DTaP vaccines. That night, he began running a very high fever, was screaming these horrible, agonizing screams that raised the hair on my neck, arched his back and was completely unconsolable. My wife and I called his pediatrician, who proceeded to tell us that my son's reaction was "perfectly normal." Really?!?! Perfectly normal MY ASS!!! We brought him to the ER soon after. They performed numerous tests and, after doing a CT scan of my son's head, they were able to determine that he had neuroinflamation, or an encepalopathy.
The next day, he was listless. He hasn't spoken but maybe 5 words since. He lost the ability to walk until he was almost 3 years old. He was diagnosed with Autistic Disorder at 26 months. He is 8 years old now and still in diapers. We have to lock the doors, and I have to sleep in front of the front door in case he gets up and tries to leave (he loves to wander). His rages are sometimes so violent that we have to force his sisters to leave the room in case he tries to attack them. His rages can be so violent that he can, in the throes of his anger, lift his 6'4", 230 lb father off of the floor. This is what parents like me have to deal with EVERY DAY!! This is what our life is like. There is no other explaination for his brain damage. But, doctors and Offit and, apparently, journalists like you, try to pawn it off as coincidence. They say that I confuse correlation with causation. Coincidence can't happen so often. So many parents cannot be wrong about seeing their children spiral into illness and neurological dysfunction so soon after a vaccine. But, to Offit and others, the only way they would say that it is a causal factor is if it were to happen when the needle was still in the arm of the child.
The reason I am disappointed in your article is that you spoke with so-called "experts" concerning this condition without looking at their background. Offit is biased; he was reprimanded by congress for his conflicts of interest in vaccine policy making. Here is someone who says that a newborn baby can handle 100,000 vaccines at once. The scientists you spoke to are biased. To them, my son does not exist. To them, children like Hannah Poling and Bailey Banks (2 children who were awarded by the government for iatrogenic autism) do not exist. How can anyone trust them at face value? These are people who's livelihoods rest on the success of the vaccination program. That is known as a Conflict of Interest. A truly objective journalist would have done what they could to address all sides of the problem and investigate who they were talking to.
Now, on to the threats. Everyone, on all sides of the issue, have received threats. I've had CPS called on me, because, apparently, I haven't vaccinated my children. Someone called the school that my youngest daughter goes to and asked them to investigate her vaccine status. Out of 400 children, only she was singled out because she had not received the MMR (I didn't feel it was necessary...she got both measles and the mumps as a baby, and I had her vaccinated for rubella). Painting Offit as a saint for speaking out against us dangerous and unhinged parents is a bit hypocritical considering that he and people like him do the same thing to people like us.
Please don't take it that I am angry at you; I'm not. I'm angry at the situation. I'm angry that doctors, instead of listening to their patients and asking, "what can I do to help?" paint parents with vaccine injured children as crazy, dangerous, ignorant and desperate sociopaths who are endangering everyone else around them. I have vaccinated my children. I encourage others to vaccinate. But when I question vaccine safety, or rather the lack thereof, I'm called "anti-vax" by people like you.
Tell me, how am I anti-vaccine? How am I endangering other people by encouraging them to read up on vaccine injuries. How am I endangering them by giving them as much information as possible in the hopes that their children will not have the same reaction as my son?
The true dangers to society are the individuals who put profit above the health and well-being of those they are sworn to help. All you have to do is look at the track record of companies like Merck, GSK, Bayer, or any of the Pharmaceutical companies, to see that my statement is true. My hope is that you further investigate, go further down the rabbit-hole, and see what you find.
Please be a responsible journalist.
It should be noted that Offit was not in fact censured by Congress. This appears to be a serious mis-statement of fact by the anti-vaxxing sites. Dan Burton complaining is not the same thing as a congressional censure. While I think Wallace's treatment of your email was dismissive, it has to be noted using a known anti-vaxxing falsehood in your talking points placed you in a camp you really don't belong in.
I know you get a lot of high-fiving over there and they are great at amping up the rage. What do you get in the way of adaptive coping? In working out the anger, in grounding yourself? In making your life better? Do you walk away from that calmer, easier, with practical ideas for how to move forward?
At some point, at least some of these angry, disappointed, and hurting parents over there are going to wake up and take stock, take stock of the wave after wave of lies told over there, the militant anti-vaccination tone now taken, and sponsor after sponsor promising unrealistic and unfounded cures. We'll be here when these parents do. We won't promise false cures. We won't stoke anger. We'll promote acceptance, adaptive coping, and scientifically sound options. And we won't make a penny off of sponsors while doing it.