9/11/2010

Bloggers Buzz, Buzz: The Poling Case as a Chance for Right-Fighting


I’ve been reading various bloggers’ take on the Poling case. Like a lot of other blogging by laypeople with a deep-seated interest in understanding the whys of their own personal situations and decisions, some of the bloggers and commenters lack the background or knowledge to analyze accurately the scientific information they are reading. That’s okay; I’ll admit upfront that I’m not a medical professional, and I don’t have advanced degrees in biology or related medical fields. There are limits to what I understand, and I’m willing to own that up front. Others are not, though. I’ve seen it a lot on sites like Age of Autism  and in my general interactions with others who insist that a dozen monkeys, some mice, and a few rats make for better science than hundreds of thousands of people being looked at; people believe the strangest things despite the ability to easily access accurate information. Some believe and insist that vaccines are injected into the bloodstream directly, a comment made often at sites like Huffington Post. Others comment that you can’t say vaccines don’t cause autism if you don’t know what does while thinking this demonstrates a solid handle on critical thinking skills. You can rule out of a lot of things while still not figuring out a cause.
Anyone can offer his opinion on things, regardless of his understanding of the material and his qualifications to speak to the matter. So people wandering the internet looking for information on complicated issues can run across a ton of really bad information, often produced in multiple clashing colors and different fonts, with every part of the page filled so that the result is a jumbled, chaotic rainbow of proofs regarding the various conspiracies of big pharma and governmental collusions to fool a nation of people.  Other bloggers have simple page designs, spare us the color-fraks, and appear to offer rational arguments and sound reasoning. The first set of blogs you would think would be easy to dismiss; however, it’s obvious that many people do not do that and flock to these sites. The other set of blogs is harder to work out. It requires digging for the information yourself, pulling the studies, reviewing the relevant information, going to the reputable sites, questioning people’s information and interpretations. In short, it requires a lot of effort that many people aren’t going to make.
What’s a person to do? Where do you go for good information and how do you know it’s good? You can’t rely on authority alone because there are plenty of quacks with an MD or PhD behind their names and the requisite education to know better. You have to judge which authorities are sound, which is a daunting task.
Step away from the autism-vaccine-mitochondrial disorders mess of this past week concerning Hannah Poling and look at the issue of global warming. There are statisticians and tenured professors saying the hockey stick graphs are all wrong, and they have degrees behind their names and convincing arguments to make. Listen to Mann, and you get a good explanation for the whole hockey stick graph, read RealClimate, and you get science out the wazoo. Get your climate science from the late Michael Crichton and you’re in for a hell of a headache. What’s a gal to do?
How can someone who doesn’t have advanced degrees in these fields decide who’s right, if these well-educated folks can’t work out what’s going on?
Take that same issue, which experts to believe, and apply it back to the autism and vaccines controversy, and it’s no wonder heads spin, and people are cranky. Bad information, kooks, conspiracies, and a lack of understanding of basic science, let alone an even cursory awareness of the complex interplay of genetics and environment at the cellular and subcellular level, and we’re frakked. Just completely frakked. And yet, most of us don’t throw our hands and give up the ghost without a try.
However, if we don’t have those advanced courses in the field we’re trying to make sense of, the Dunning-Kruger effect of believing ourselves to be more competent than we really are is going to kick us in the ass. I guess the fact that most of us will be blissfully in denial about that is a balm. We won’t know we’re wrong, and we won’t believe people when they tell us we are.
There’s a place for advanced education. There’s a reason that having a knowledgeable instructor looking over your grasp of the material is indispensable: it gives the person learning new information the chance to correct any misunderstandings. Reading complicated textbooks before you’ve climbed the necessary background information on your own without someone to check your understanding leads to serious messes, messes you are unaware of and unable to correct.
Now, if you go blogging about these things and you flub it, chances are someone’s going to tell you. There’s the possibility you can correct misunderstandings and get closer to understanding the subject you’re trying to master. But there’s also the chance that the person doing the correcting is a dumbass who’s also inflated his competency levels. Either way, if we’re committed to the truth, if it happens to us, we go back to the drawing board and reconsider our positions. Did we screw the pooch? How do we know? Sometimes we really do want to throw our hands up in the air and say the hell with it. And maybe, we do. We just admit that it’s above our paygrade and we’re going to have to choose who to trust. That can be a real crap shoot.
So, if it doesn’t matter to us personally, we’ll let it go. Can I figure out which side of the climate fight is right? Oh my gods, no I can’t, although since the consensus is that global warming is real, that it appears to be in part caused by man-made factors, I’ll follow the consensus, but I won’t tear my hair out over it; I don’t want to be a climate scientist. Instead,  I’ll work to be a responsible citizen, realize that the media really butchers its science reporting, and motor on (well, I will. We live in the country and I can’t bike to work, even if I wanted to).
What about this whole mito thing? Did Hannah have it before? Did she get it from the vaccines? Is it gone now? Do we just throw up our hands and say that autism features are the same as autism and the government conceded and the Polings got a lot of money, so vaccines cause some cases of autism? Yeah, some of us will elect to do that. It’s easier. Concession is always easier.
Will some of us look through mito dysfunction and as much of the relevant material about Poling and his daughter as can be found and realize a lot of it is above our paygrade? Well, I will at least. I read NINDS’ article on mito, and while some might use this brief article and assume they get it, they really get it, I won’t pretend to have a firm grasp on this. After all, all I have is 8 hours of chemistry and 8 hours of A & P. It’s above my paygrade. I work hard to consume the appropriate textbooks in the logical order of increasing complexity, but it is not my field. I won’t weigh in this any more than I have; I won’t speculate on her case or any of the various analyses of what this settlement means. Court cases aren’t science. They’re court cases.
I’m glad that the Polings will not have to worry Hannah being cared for.  But I won’t use the government settling the case and paying the large sum to further an agenda, to prove a point, or to belittle others.
There are too many families who have children with disabilities who do not have the safety net that the Polings now have for their daughter.  There are far too many adults with disabilities who are condemned to poverty, who exist in the shadows, forgotten about and uncared for.
So, the internet can buzz about, with bloggers and commenters skewering science, getting the science right, whatever the case may be, but I’m going to think of the friends I’ve made who I know are those adults with no safety net and hope that we’ll be able to pull our collective heads out of our backsides and make a difference here and now for those who are suffering and living without.


Linked above, but in case you missed it, Gorski wrote on this in 2008. It's still an excellent analysis.

1 comment:

Roger Kulp said...

I had quite a long comment I tried posting both here,and at LBRB on Friday.Like my angry comment here,about AoA,and the antivaxers ignoring the rise in bipolar,it didn't go through.I don't recall what it said,but it had a lot to do with Prometheus' pretty good comment at RI,and metabolic disease,and regression in general.


You say:

Like a lot of other blogging by laypeople with a deep-seated interest in understanding the whys of their own personal situations and decisions, some of the bloggers and commenters lack the background or knowledge to analyze accurately the scientific information they are reading. That’s okay; I’ll admit upfront that I’m not a medical professional, and I don’t have advanced degrees in biology or related medical fields. There are limits to what I understand, and I’m willing to own that up front.

In trying to get a diagnosis for myself,with what is looking like an increasingly unique/rare metabolic disorder,with many of the symptoms,but not the underlying causes,of Ms.Poling's mito disorder,I have had to become an expert,like many parents of children with rare disorders have.

As the web page of my new specialist says:

"One group of such disorders is inborn errors of metabolism. These genetic disorders encompass defects in the complex biochemical pathways both of catabolism and anabolism.These disorders traditionally include those involving amino acids,organic acids, ammonia metabolism,and lysosomal storage disorders.With advances in genetics,inborn errors of metabolism now encompass mitochondrial disorders of aerobic metabolism, fatty acid oxidation, carbohydrate modification of proteins and lipids, purine and pyrimidine catabolism,peroxisomal function,and vitamin and mineral metabolism.Diagnosis of these conditions requires special laboratory studies not routinely ordered or performed by hospital laboratories.As individually these disorders are rare,and the diagnosis and treatment of the conditions specialized,many primary care physicians have little experience with diagnosis and treatment of these conditions."

So you are not alone in your limits of understanding of these disorders.And yes,a lot of the patients they see here have an autism diagnosis as well.It wouldn't hurt for everybody who claims to care about autism,ND and antivaxer alike,to admit that those with autism due to metabolic and chromosomal disease exist.For ND to openly welcome us into the tent,by acknowledging our conditions for what they are.

What really burns me up,though,is the way dumbasses,like Dan Olmstead,and Sheryl Atkisson blow off mito/metabolic disease as a cause of autism.I'm still burned up over Olmstead's royal dumbassery about "mumbling Orwellean doublespeak about a mitochondrial disorder."One of the stupidest things I've read there in,I don't know...months?

But DAMN that is a lot of money.I consider myself lucky I lived long enough to get a real diagnosis,no easy feat,but money like that would be nice. Especially after all these years of never being able to work,with my mother and I hovering just over,or under the poverty line.