Malingering’s World

I’d never experienced so much personal criticism for curiosity until I entered the blogging world and the message board culture, but it’s come to the point that I am starting to go insane and have removed myself from as many online communities as possible. There are hoards and hoards of people out there who will adamantly believe in whatever they like, defend it without vacillation, and refute all opposing opinions without any concrete evidence at all.

Maybe it’s because I come from a science background or maybe I’m just a nerd, but to me an opinion is no more than an opinion until you have hard scientific data backing it up. And even then your glory is only temporary as this stance could potentially be dismantled with contradictory information at any moment. Such is the nature of research.

Lately I’ve been encountering more and more people who try to refute the results of studies, professional opinions and research with ridiculous agenda driven arguments like “well, that research is two years old” or “my gut tells me otherwise” which is really fine with me if you want to base your choices on your bowel gas but for fuck’s sake why are you trying to force it on other people? Or even worse, your children? I suppose I shouldn’t have a hard time understanding WHY people do this (see: The Stubborn Brain chapter of Mind Of Its Own) but rather where people find the arrogance to stand steadfast behind shit that they’re pulling out of their assholes. I could never be so confident to tell someone how to improve their health by extrapolating from personal experience (and besides that, I’d be fired) so how do all of these internet people (and DAN “doctors”) get away with it?

It’s only been year or so since I started participating in online communities, and in a very short span of time I found that no matter where I go I am soon labeled a know-it-all or a brat because I ask questions and look things up. Ironically this generally comes from my admission of ignorance and a desire to find the truth. There is a certain online publication which I had to stop writing for because apparently my inability to set aside my questions and desire to find correct answers really upset people. Then it started happening in other online communities, doing research and doubting the dogma spewed forth from certain leaders or experts somehow made me a narrow-minded ass. Fine.

The best thing about the internet is the limitless network of info sharing, but the worst thing about the internet is the infinite amount of misinformation. The reliability of info should not be a democratic process, and this is why I despise shit like “yahoo answers.” Yet in many online communities, majority rules over scientific data and anecdote is now as powerful as the scientific method. Anyone can deem themselves an expert (see Jenny McCarthy) and create a following, and add a few irrelevant credentials and testimonials and you’ve created actual truth.

I used to think this stemmed from laziness or ignorance but now I understand that it comes from self-serving narcissism and a profound desire for control. I have found that the more scientific data (in the form of peer reviewed journal articles) I cite, the more defensive people get. I have been called a bitch, a brat and I’ve been accused of sabotage. I have been told “may you find a way to consider new points of view, whenever you’re ready.” God forbid I consider the point of view that data is data and anecdotes are anecdotes and each should be taken for what they are.

There has been a long standing debate amongst me and my friends about whether or not it is better to understand the truth or better to wholeheartedly believe your own delusion regardless of whether or not it is based in reality (and what is reality anyway?). We’re starting to agree that actuality doesn’t matter as long as you believe in your own world. It’s like living a placebo life. But it works.

I am embarrassed to live in a place where a Playboy Bunny who believes she is an Indigo Mom and her son is a Crystal Child (formerly known as autistic) is now influencing new parents into not having their children vaccinated with her new title as TACA spokesperson.

What is this insanity?

How many scientific, peer-reviewed studies does Doctor Miss McCarthy use to formulate her theory? Where is her evidence that vaccinations had anything to do with her child being a Crystal Child?

Look, the platinum blonde inflated tittied moron can believe whatever fucked-up hocus pocus she wants. She can treat her kid and say “my son is my science” and she can make all the uneducated idiotic decisions she chooses, but for fuck’s sake she needs to be responsible when it comes to her influence on the Oprah-Larry King viewing population. The media has already successfully freaked every person of child bearing age into believing that autism is worse than your child dying in a car accident or having cancer, and now some beaver-exposing mother comes on Oprah, Larry King, 20/20 and The View and blames her kid’s crystalline properties autism on vaccines for no apparently reason beyond her (sperm filled) gut feeling and now parents are showing up at the pediatrician refusing vaccines for their children.

At least she’ll have a hand in spreading more diseases than just genital herpes and gonorrhea.

I already did a review (not a manifesto or recommendation, so back the fuck up, Mercury Militia) on vaccines and autism in the medical literature. Maybe I should send it to Miss McCarthy so her ghostwriter can read it to her. There is no hard evidence that vaccines cause autism. Another study came out this week. And thermosial is not even used in the MMR vaccine in this country yet she went whining about it on Oprah.

There is a shitload of evidence that measles, mumps and rubella can cause permanent brain damage in children and fetuses.

A few quotes from www.emedicine.com

Measles is a highly contagious and potentially serious viral infection, with a characteristic viral prodrome and rash. It was once one of the most common and important infections worldwide, but it has become very rare in developed countries where vaccine use is prevalent. Unfortunately, it is the leading vaccine-preventable cause of child mortality worldwide.

The measles virus frequently involves the CNS directly; however, clinically apparent encephalomyelitis occurs in about 1 of every 1000-2000 patients with measles. This condition is fatal in about 10% of patients.

Mumps encephalitis occurrence ranges as high as 5 cases per 1000 reported mumps cases, and males are affected 3-5 times more frequently than females. Permanent sequelae are rare, but the reported encephalitis case-fatality rate has averaged 1.4%.

Congenital rubella syndrome in the first 16 weeks of pregnancy causes intrauterine growth restriction (sometimes termed intrauterine growth retardation), intracranial calcifications, microcephaly, cataracts, sensorineural defects, cardiac defects, hepatosplenomegaly, osteitis, or miscarriage. If rubella virus infection occurs in the first 12 weeks of pregnancy, up to 90% of patients have some manifestations of the congenital rubella syndrome. For infection at 12-16 weeks, the risk is approximately 20%.

Oh and guess what? Mothers infected with rubella during pregnancy have been shown to have a higher risk of having kids with autism.

And let’s not forget about herd immunity.

Maybe we need another playboy bunny or even better yet an internet porn star to have a child infected with one of these communicable and preventable illnesses so she can write a book and go on the View and tell everyone how important it is to have their kid vaccinated. I mean I know that I personally used to get my facts from places like the CDC or NIH but now that we have reliable playboy sources providing information which is not driven by ulterior motives like selling books or making tons of cash I don’t know why those agencies even exist. I have a feeling the CDC will go under soon, and in its place we can open the McCarthy-Carrey Institute of Crystal Children and Childhood Autism where the slogan reads “My Son is my Science” and parents line up at the door, fathers with copies of Playboy in their hands eagerly awaiting an autograph, and gluten-free/casein-free cookies are served to all while Indigo Moms and Periwinkle Moms alike discuss the wonder of today’s science and breakthrough theory spewed from the mouth of the great platinum blonde expert while an Oprah bobblehead perched next to her nods in approval. Soon she will have her own magazine (similar to Oprah’s but probably called A rather than O, hopefully a scarlet one) and her own channel (not just Oxygen but rather Hyperbaric Oxygen) and we won’t have to listen to all of those conspiring scientists or public health experts who believe in evil preventative medicine like (gasp!) immunization.

I will be up all night waiting for the mercury people to come vomit shit about how they personally know of a child who became autistic 3 seconds after getting his MMR shot and all comment forums are open. I will tell you lots of stories about how 3 seconds after I brush my cat he went and took a shit or how 4 seconds after I got to LAX I got a rash on my stomach or how 2 minutes after putting gas in my car I sneezed and we can compare empirical data. Bring it.

Another question I have, while you DAN people are here: if autism has been shown to be associated with decreased breast-feeding, how does casein come into this? Just asking.

Or at least socially detached enough that this stuff wouldn’t bother me.

Unfortunately I’m not.

The gluten free/ casein free people are over on my friend’s blog wreaking havoc. There are accusations flying left and right. People come soaring in with some insane agenda and then force feed the rest of the world their earth shattering anecdotes and insinuate that everyone else is just too narrow minded or too neglectful a parent to try anything and everything on their child in an effort to make them normal neurotypical. No amount of time, money or risk is going to stop them from a CURE. I’ve seen other online beatings on the blogs of other parents of autistic children and it makes me ill. Clearly these parents are well aware that these things are out there. Clearly they want the best for their children. Yet they’re being attacked like criminals for making a decision as rational as the decisions their opponents have made. Because there’s no scientific backing either way.

I did some of my own searching on the GFCF thing. I have come to no conclusions other than the fact that being a parent of an autistic child doesn’t decrease your risk of being an arrogant asshole and in fact can turn you into a defensive pseudoscientist name calling jerk.

Do you know what pisses me off more than the angry militants of the GFCF cult? Those people who villainize doctors and accuse them of withholding treatments or saying they “don’t know everything” because they apparently can’t Google like the GFCF/mercury people since it wasn’t a course in medical school. People like Jenny McCarthy who blames her doctor for the autism because her child was vaccinated. Or people like this person who turns one inattentive doctor into the voice of the entire corrupt medical community.

A lot of doctors are salaried. it doesn’t matter if they see 2 patients a day or 20, so really they’d rather see 2 and actually have the time to be thorough and spend some time with their patients. If they knew of a “cure” that would keep autistic kids and their moms out of the office, and make everyone feel better they sure as hell would do it. They aren’t making extra money off of watching people suffer.

Doctors who work in HMOs are often told what they can or cannot recommend as a treatment, and those are usually determined by national standard practice guidelines, not the MD. If doctors recommend some treatment that goes horribly wrong and that treatment varies from the standard guidelines, disciplinary action can be taken, the can be sued for malpractice, they can lose their licenses as happened with a number of DAN practioners. Most doctors didn’t spend decades of school and training and $200K of gov’t loans to lose their practice because they decided that a bunch of anecdotes they found online or heard about from a playboy model constitute data.

Most doctors are legally and/or ethically bound to practice evidence-based medicine (as in evidence as found in peer reviewed medical journals and have study arms of more than 10 subjects in each). Some do not feel it is ethical or within the Hippocratic Oath to recommend something which has no scientific backing. Does this mean they don’t know it’s out there? No. Does this mean they can’t Google like Titte McCarthy? No. Does this mean they responsible for the frustrations of having an autistic child? No. It means they have a set of ethical standards that they are constrained to because people trust them to do no harm. They have to think about public health issues like the potential consequences of NOT vaccinating a child, which can be devastating.

It is also very hard to recommend treatments to people when they are not FDA regulated. Sure pretty much everyone, autistic or not, will benefit from taking fish oil or omega 3s. But there is no FDA approved formula out there and there are no standards to hold the OTC supplements to. You send people to Rite Aid to pick some up and for all you know its made from fish from a toxic waste dump. There’s no one keeping an eye on the safety.

There is a shortage of family practitioners in the US. They are exhausted and overworked. They don’t have time to work against autistic parents. They’d prefer everyone prevented illness and stayed home and healthy. There’s no money to be made from autism or withholding treatment… What has proven to be incredible lucrative is fad therapy for desperate patients and their parents and the practice of treatments like chelation or medical marijuana or ass implants which are not covered by insurance. Then you can make a shitload and walk away filthy rich. And as seen with many DAN practitioners, they still practice medicine without a license and they still make a shitload of money. So where are the ethical guidelines there?

The more shit I read from the mercury militia and the Jenny McCarthys of the world, the more I realize that people would rather blame their medical practitioner than accept their kid has a developmental disorder and move forward from there. This is depressing to me. Everyone needs a villain. Some call it Mercury. Some call it Gluten. Some call it Doctor. I think I’m naming mine Arrogant Oblivion.

And while I’m ranting, let me just say that I hate those who justify a lack of clinical evidence by stating ( taken from here for example)“Although, in an effort to ameliorate the symptoms of autism in their children, parents have been investigating the usefulness of diets devoid of gluten and casein, for many years these methods have not been accepted by many orthodox medical practitioners. This is largely because there has been no hypothesis that has been sufficiently able to combine all the relevant evidence into a single, comprehensible series of events.” If it really works and the data is there to prove it, any decent scientist/MD/biochemist could come up with a hypothesis. It isn’t hard to pull one out of your ass if you have some good data to back it. If the results are that astounding, journals would not reject a study showing vast improvement because of a weak-ish hypothesis. If you look at other mental illnesses: bipolar disorder, schizophrenia, ADHD, generalized anxiety disorder – all purported mechanisms of the illness are simply theory and hypothesis, and after years of research the etiology of the illness is still unknown. Yet thousands of studies have been done on treatment efficacy and there are loads of clinical data. Look at research on depression. You can’t tell me that’s never been done. Enough with the excuses. Let’s start getting legit.

Sorry my blog isn’t funny right now. As soon as I work out this frustration we will get back to regularly scheduled programming.

I am still working on the autism research. To me, research means looking through peer reviewed articles on PubMed. It does not mean Googling a few words and believing everything I read because it showed up when I clicked “I’m feeling lucky” though apparently that’s what Jenny McCarthy does and it’s good enough to help her write a book, but since I am not a Playboy skank I probably need to focus on sources with a bit more credibility. Then again it appears you don’t even have to Google things to start a fucked up cult belief system, so maybe I’m just working too hard.

Contrary to the beliefs of comments left behind on my last autism post, I am not “forming an opinion” on anything, because none of this research is my own. I am reviewing articles. That’s it. I am not saying this is bad or that is good or he is wrong or she is right, though I am saying Jenny McCarthy is a skank and I don’t ever want to read a “book” with her name on it even if it’s Playboy.

I must admit I am somewhat biased as I tried the gluten-free thing for about a month my digestive issues and I felt worse. Much worse. Went back to the gluten, felt much better. No, I’m not autistic, but since the what one puts in the gut is directly related to its function, I figured it would have an effect. I’ve been looking all night to understand how “leaky gut” and “inflammation” affects the BRAIN to support this GFCF hypothesis, but I’ve found nothing. Maybe Jenny can explain it to me.

Anyway, a night of searching, and this is what I’ve found:

1) Pediatr Nurs. 2007 Mar-Apr;33(2):138-43
To date, there is little empirical evidence supporting the effectiveness of dietary restrictions in treating child psychiatric disorders, in particular, autism and attention deficit hyperactivity disorder (ADHD).

2) J Dev Behav Pediatr. 2006 Apr;27(2 Suppl):S162-71.
Seven trials of these diets in ASD are critically reviewed; 6 of these were uncontrolled trials and 1 used a single-blind design. All reported efficacy in reducing some autism symptoms, and 2 groups of investigators also reported improvement in nonverbal cognition. Design flaws in all of the studies weaken the confidence that can be placed in their findings.

3) J Autism Dev Disord. 2006 Apr;36(3):413-20
This study tested the efficacy of a gluten-free and casein-free (GFCF) diet in treating autism using a randomized, double blind repeated measures crossover design. The sample included 15 children aged 2-16 years with autism spectrum disorder. Group data indicated no statistically significant findings.

4) Cochrane Database Syst Rev. 2004;(2):CD003498
The one trial included reported results on four outcomes. Unsurprisingly in such a small-scale study, the results for three of these outcomes (cognitive skills, linguistic ability and motor ability) had wide confidence intervals that spanned the line of nil effect. However, the fourth outcome, reduction in autistic traits, reported a significant beneficial treatment effect for the combined gluten- and casein- free diet.

5) Nutr Neurosci. 2002 Sep;5(4):251-61.
A randomly selected diet and control group with 10 children in each group participated. Observations and tests were done before and after a period of 1 year. The development for the group of children on diet was significantly better than for the controls.

Since most of the “research” these parents cite are mere anecdotes, I also found this little story written by a physician. I found it interesting.

Here’s a woman who helped her son’s autism by removing soy.

And here’s a woman who “cured” autism by substituting milk for soy.

Here’s someone who found no regression after quitting the diet.

A forum where different parents discuss their results on the diet

A parent who found their child was worse on the GFCF diet.

The GFCF story on About.com with a summary of the theories and references.

Success stories on GFCFdiet.com. There is no place to post failure stories, so this is rather biased.

Recently, one of my most favorite kids (see above) was diagnosed with autism. In my heart of hearts I believe that by the time he is 5 that label diagnosis will be hardly apparent because he is fun and social and different than every autistic kid I have ever worked with, however in the meantime I have been doing a lot of reading about childhood autism and the current research.

Today I am reviewing the vaccine issue, because I think it’s a very important public health issue and there has been a lot of hype about vaccines and mercury and autism and I wanted to take a look at what the studies show before I start spouting off about anything.

I’ll start with the CDC, who states the weight of currently available scientific evidence does not support the hypothesis that vaccines cause autism. They also remind us that thimerosal, the evil mercury agent used in vaccines has not been used since 1999.

Here is the National Institute of Health’s page on autism and the MMR vaccine, which also states there is no proof that vaccines cause autism.

American Academy of Pediatric’s autism information page as well as information examining the initial study that started this whole thing.

JAMA article from 2001, a 14 year epidemiological study of over 15,000 cases in California which concluded that these data do not suggest an association between MMR immunization among young children and an increase in autism occurrence.

New England Journal of Medicine article from 2002: a study of over 537,000 Danish children showed that there was no association between the age at the time of vaccination, the time since vaccination, or the date of vaccination and the development of autistic disorder and no correlation between the vaccine and the disorder.

A study in Psychological Medicine of 2400 subjects showed no increased risk of autistic disorders in recipients of the vaccines in the UK.

In 2004, the journal of Evidence Based Nursing reviewed 10 epidemiological studies and found “existing epidemiological evidence shows that (1) rates of autistic spectrum disorder (ASD) are not higher in children who receive mumps, measles, and rubella (MMR) vaccination; (2) ASD rates have not increased in relation to increased MMR vaccination coverage; (3) time of development of ASD is not associated with MMR vaccination (ie, diagnosis of ASD does not generally occur soon after vaccination); and (4) variant ASD is probably not associated with MMR vaccination, although some of the studies examining this question had important limitations.”

In 2004 the American Journal of Preventive Medicine published a review article titled Autism and thimerosal-containing vaccines: Lack of consistent evidence for an association which concluded that “the body of existing data, including the ecologic data presented herein, is not consistent with the hypothesis that increased exposure to Thimerosal-containing vaccines is responsible for the apparent increase in the rates of autism in young children being observed worldwide.”

JAMA as well as The Journal of Family Practice published a study on thimerosal in 2004, of 467,450 children in Denmark from 1900-1996 and concluded that “autism rates in children receiving vaccines containing thimerosal were not statistically different than for children receiving thimerosal-free vaccines.” JAMA. 2003;290:1763-1766.

Here is a study in Medical Science Monitorwhich shows the opposite though even after reading the entire article I’m not sure how many cases were studied.

The Canadians also did a review of the literature, finding “no convincing evidence” to support the claim that vaccines had a causal relationship with autism. Can J Neurol Sci. 2006 Nov;33(4):341-6.

The Lancet, who published an article linking vaccines to autism in 1998 later apologized for publishing a very flawed study and misleading its readers.

A few more links:
Federal research being done on vaccines and autism
American Academy of Pediatrics looks at thermosial

I have a number of friends with young children/babies/fetuses who are now trying to make the decision about whether or not to vaccinate their kids. Honestly, I didn’t think it was a decision to be made, but thanks to scare culture and 60 minutes, it’s an issue. So there you have it, the evidence over the last 5 years. Do with it what you wish.