Saturday, June 18, 2005

Swimming through the thimerosal

Whoa. (Another Keanu Reeves moment.)

I had a sneaking suspicion when I posted it that I might have stepped into it yesterday with my cranky little rant. And step into it I did. My article was linked to from Pharyngula, a Daily Kos discussion thread, the Captain's Quarters, the Evidence of Harm discussion boards, and even a Democratic Underground discussion thread (where, depressingly there were quite a few people ranting about how the mercury-autism connection is being "covered up"). Yesterday set all time records for the number of hits in a single day to this blog. It's still strictly small stuff as far as the big bloggers go ("Ptooi! I laugh at your measly 2,100 hits in a day!"), but for me it was big. Any time you take on the mercury/autism crowd, particularly in such a combative fashion, you have to be prepared for some even crankier responses. In retrospect, perhaps I should have been less combative, but sometimes I just have to vent. Strangely enough, though, the negative reactions were actually fewer than I expected and the positive reactions more numerous, and the really strongly negative reactions were way fewer than I had expected.

There are too many responses to respond to each individually, but they seemed to fall into categories. Several suggested that I tighten this up and send it to Salon.com. I'm flattered. I assume it would probably be necessary to remove the scatalogical references referring to the article as a big dripping turd, but I could do that. Indeed, I was considering doing just that until I saw some of the letters to the editor that have already shown up at Salon.com. One was from Kathleen Seidel, who runs the website Neurodiversity.com, and you should read the letter in its entirety. As for the others, these guys were just as hard on RFK Jr. as I was. Some examples follow.
Lisa Randall:

What about the Geiers, who claim to have found fantastically high rates of autism among children who received thimerosal? Would that be the same Geiers who had never even heard of SAS, a basic tool of statisticians, before encountering it at the CDC? The same ones who print their "work" in vanity press journals and have been roundly debunked by not only the Institute of Medicine but also the American Academy of Pediatrics and other academic researchers? The father who is a gynecologist-geneticist and the son who runs a consulting business helping people sue doctors?

Thanks, Lisa. I had forgotten about the Geiers' inability to use SAS. That was truly amusing when I found out about it. Let's also not forget their attempt to compromise the confidentiality of patients in the CDC database, either, or that David Geier's company exists mainly to sue vaccine manufacturers and the government.
Kaethe Douglass:

"The fact that Iowa's 700 percent increase in autism began in the 1990s, right after more and more vaccines were added to the children's vaccine schedules, is solid evidence alone," says state Sen. Ken Veenstra. But Veenstra is wrong. That isn't evidence. That isn't anything but coincidence. The 1990s also saw a sharp increase in the use of car seats for children, but no one is blaming them. A 700 percent increase in autism, or any other diagnosis, is much more likely to indicate a growing awareness of a possible diagnosis, rather than an actual increase in patients suffering particular symptoms. And if Veenstra cared to do a little bit of research, he would see that the less specific diagnosis of "mental retardation" dropped as sharply as autism increased.
A good point. I didn't know enough about the numbers to work it into my piece. It's also another nice example of how RFK Jr. confused correlation with causation.
Erin Amerman:

In the past five years, hundreds of studies have been done by independent researchers looking for a correlation between vaccines, thimerosal and neurologic disorders such as autism. The studies have repeatedly failed to find any such link. However, the media neglects to report this and instead latches on to one study performed in 2003 that did find a statistical correlation between thimerosal and autism. This is a grave disservice to the general population, because many fail to understand that the key in determining the validity of a research study is in repeatability of the results. The results of the 2003 study have never been repeated. Additionally, on closer examination, the 2003 study was found to have many design flaws, which call into question the validity of the results....

....The question that remains on the minds of many is that if thimerosal represented no health threat, why did the CDC and the FDA recommend its removal? Simply put, it was removed to appease the public. It is far easier to remove the preservative than it is to risk the health of thousands of children whose well-intentioned parents opt not to get them vaccinated. Why risk the health of these children, and indeed the health of the general population, when the preservative could easily be removed?
Quite correct! We're a rich country. We can afford to replace multiuse vials (the main reason for needing a preservative in vaccines in the first place) with single-use vials. So can Europe, Australia, and much of the rest of the developed world, and if removing the thimerosal in vaccines is necessary to keep parents from abandoning vaccination, regardless of whether the reason the thimerosal scares them is based on fearmongering and weak-to-nonexistent evidence, then I suppose we have to do it. Unfortunately, I don't know about Third World countries, though, where mass vaccination programs are most urgently needed and where there is the least money to pay for them.

These comments already in Salon.com lessened my sense of urgency in retooling my piece. Also, since my home is about to be invaded later this afternoon by an old friend, his wife, and their five kids, I probably won't have time to get to it until next week, if at all, given that I'm going to be on call for our group.

A couple of comments that I saw elsewhere took me to task for supposedly not proving my point that RFK Jr. had very selectively quoted the Simpsonwood transcript, pointing out that I had shown only one example. One reasons I picked only one example are that my piece was too long as it was. Also, part of the reason is that the damned transcript (warning: direct link to bigfile; don't click if you don't have time to let it download) is so long and because there is so little in the transcript that sounds conspiratorial, particularly in context. Try reading it yourself. I've only gotten through part of it, but I'll try to slog through the rest. It's very dull and dry. However, most of that's there is scientists debating the data and potential sources of bias and how to proceed from what was known in 2000. Read it yourself and decide if I was incorrect in my characterization--if you can stay awake while doing it.

One class of comments came from parents of autistic children. Not having an autistic child, there's no way I can truly understand what they're going through. I have a great deal of sympathy for the parents of any child with developmental disorders or other illnesses. Some of them believe chelation therapy helped their child. No matter how many times I repeat the fact that there is no evidence from clinical trials that chelation therapy does anything at all for autistic children and the fact that it is not without risks, it will never convince them. In any case, anecdotal evidence is only useful for formulating hypotheses to generate further research. I have dealt with the issue of alternative medicine testimonials before in relation to breast cancer. Some of what I said there is also applicable to autism and chelation therapy as well. I've also dealt with chelation therapy before in the context of its uselessness for treating cardiovascular disease. As happy as I am that the children of these parents are doing better, I still think it is a big mistake to credit chelation therapy for their improvement. For example, I can provide counterexamples for whom chelation therapy did no good. Finally, I realize what I've said may have sounded dismissive, but it wasn't. It is a natural desire to look for causes for illnesses like autism or for people to blame, and, even with my skepticism, I wouldn't bet the farm that I might not be tempted to take the same path if I were ever to have an autistic child. My take on this issue is here.

One comment that I feel I need to address directly came from Rob Helpy-Chalk:
Why does concern about a thirmisol/autism link automatically make one anti-vaccine and anti-science? Certainly we have seen other cases of drug companies surpressing evidence that one their products is harmful. Do you have to accept every aspect of current medical practice in order to avoid being labeled a quack or the victim of a quack?
I'm afraid you're using a bit of a strawman argument there, Rob. I never said that concern about a thimerosal/autism link makes one "anti-vaccine" or "antiscience." Berry picking data and bad science (even pseudoscience in some cases) to serve an activist agenda, as RFK Jr. did in his Salon.com article, is what makes one anti-science at least. I will concede that not all (or even most) who express concern about thimerosal are antivaccine, but enough of them are and the end effect of their activity is the same: making the parents of autistic children feel guilty for having vaccinated their children and instilling fear in parents about the safety of vaccines, all on the basis of exceedingly weak science. The data from Denmark and Canada are quite clear. Autism rates have not started to decline, despite no thimerosal in vaccines for 10 years. And, contrary to what one DU'er who really didn't like my post thinks, widening of the diagnostic criteria does not account for this lack of a decrease. (This same DU'er also clearly has no clue about the mortality rate of untreated meningitis and how fast these patients can die; although I will concede that RFK Jr.'s article was so sloppy that he didn't mention if these patients had bacterial or viral meningitis, which would have made a difference; using what I know of medicine in 1930, I made the educated guess that it was bacterial meningitis and that the scientists were trying to use thimerosal as an antibiotic.) If the connection between autism and mercury were as strong as advocates claim, the rates of autism in Canada and Denmark should have plummeted dramatically over the last decade regardless. They haven't there, and they probably won't in the U.S. over the coming decade, now that thimerosal has been removed from vaccines. Believe it or not, though, I'd be quite happy if they did, even if it proved me wrong and made me look like an utter fool for what I posted. Who wouldn't want autism rates to fall and find a signficant part of its pathogenesis?

Finally, thanks to Autism Diva, Kristjan Wager, Skeptico, HCN, Jim Laidler, Ali, Soapgun, and Kathleen Seidel for the tactical air support.

ADDENDUM: Two last updates on this issue are posted here and here.

32 example(s) of insolence returned:


At 6/18/2005 11:04 AM, Anonymous Kristjan Wager said...

Nice round up, and good to see that other people have pointed out the factual errors to Salon. Salon usually is good enough at correcting themselves, so let's hope they do it this time.

The focus on a doubtful thimerosal connection means that research into more likely culpits are overlooked, and maybe not even carried out.

(BTW, my last name is Wager, not Wagner - common mistake).

 

At 6/18/2005 11:28 AM, Blogger Orac said...

Sorry. I'll fix it.

And you're right. Directing all these dollars and effort into a link that is dubious at best and already disproven at worse does prevent that money and effort from being used where it could do more good.

 

At 6/18/2005 11:53 AM, Anonymous Kristjan Wager said...

No worries - my name is not the easiest to remember. At least 'Wager' is a word in English, in Danish it's just a very rare surname (I think there are about 60 people sharing the name in all of Denmark). It doesn't help that the spelling of my first name is pretty rare as well - I even have had my name misspelled in my passport.
Kristjan is actually a old Nordic way of spelling Christian, though Kristian is a more common way of spelling it.

Now, back to the debate at hand....

 

At 6/18/2005 1:34 PM, Blogger Kelly said...

Further goes to show how laypeople (RFK Jr included) are unable to effectively evaluate research. Seems a little odd that Salon would publish such an article from a layperson/activist. Being the son of a murdered fmr. attorney general/senator doesn't qualify you to verify the accuracy of medical research.

 

At 6/18/2005 2:10 PM, Anonymous paulb said...

Amazing reaction to your post. Merits an Instalanche imo.

One takeaway on the discussion that I have, largely as a result of the comments section, is that there is a very strong undercurrent of big business phobia here. Straight faced accusations of conspiracies worthy of a Grisham novel. You linked to Tom Tomorrow who made the following comment, that I think, sums this up perfectly:

"...But instead, some unholy alliance of bottom-line Big Pharma, lapdog politicians and arrogant physicians conspired to keep this information from the public.

From the parents of small children"

Of course. Its the evil republicans and big pharma. Very simple.

The mirror image of this view is a "conspiracy" among alt-medicine types,"activists", and of course, trial lawyers, to mislead vulnerable parents of autistic kids with bad science.

This seems much closer to the truth to me.

Anyway, keep up the good work. I think its important.
.

 

At 6/18/2005 2:20 PM, Blogger JM O'Donnell said...

Once again this is a great post and I really hope that people pay attention to the points that have been made. Particularly that causation is not linked to an event all the time. For an example, I could point out that oxygen is dangerous because traces of oxygen was found in 99% of the lungs of people who had died. Just because some event happens doesn't mean it was the cause of X effect.

This is what nearly all of the studies in the mercury-autism connection have found, that the mercury based preservative does not end up causing neurological damage. This is because the rates of autism in children are still the same between mercury based preservative vaccines vs. non mercury based vaccines (also unvaccinated children vs. vaccinated children). There is no solid evidence at all indicating a link.

Further goes to show how laypeople (RFK Jr included) are unable to effectively evaluate research.

And how far certain individuals will go to distort data or tell 'half' the truth. We are getting that over here and Oracs comment " didn't mention if these patients had bacterial or viral meningitis" made me remember further tactics that are used over here in NZ (which I have recently blogged about, as an addendum to my previous post: http://www.blogger.com/post-create.g?blogID=13427636)

As an additional comment, if the individuals had meningitis and it had progressed to a certain stage, they were probably doomed regardless of what they were given. Mercury poisoning would have been the least of their concerns.

 

At 6/18/2005 2:41 PM, Anonymous Skeptico said...

From the “one DU'er who really didn't like my post”:

First this guy argues that the reason autism rates have been increasing is because the parameters for and chances of diagnosis keep increasing. In the same paragraph, he then asserts that the fact that Canadian and Denmark autism rate are not FALLING offers "very strong epidemiological evidence" that thimerosal and autism aren't linked. Now who is confusing correlation with causation here?

Answer – he is.

Correlation of mercury with autism doesn’t prove a link, but lack of correlation between reduced mercury and reduction in autism (ie no reduction is autism) falsifies the mercury-autism hypothesis.

Science doesn’t attempt to prove things true; it tries to falsify things – prove them wrong. The principle of falsification is incorporated into the scientific method due to the logical fallacy of affirming the consequent http://www.intrepidsoftware.com/fallacy/affirm.php:

Any argument of the following form is invalid:

If A then B
B, Therefore, A

Examples:

If I am in Calgary, then I am in Alberta. I am in Alberta, thus, I am in Calgary. (Of course, even though the premises are true, I might be in Edmonton, Alberta.)

Or as this DU'er would have it:

If there is a causal mercury-autism link, rising use of mercury would result in rising autism.
Autism rises, therefore there is a mercury-autism link.

Fallacious argument. Falsifying the link is a valid argument.

 

At 6/18/2005 4:05 PM, Anonymous Anonymous said...

Could you possibly address the research done by Dr. Richard Deth of Northeastern University? His work is bench science as opposed to epidemiological studies. From the
news release of the study:
"According to new research from Northeastern University pharmacy professor Richard Deth and colleagues from the University of Nebraska, Tufts, and Johns Hopkins University, there is an apparent link between exposure to certain neurodevelopmental toxins and an increased possibility of developing neurological disorders including autism and attention-deficit hyperactivity disorder. The research – the first to offer an explanation for possible causes of two increasingly common childhood neurological disorders – is published today in the April 2004 issue of the journal Molecular Psychiatry."
Full study here(pdf).

Dwight Meredith

 

At 6/18/2005 6:21 PM, Blogger Orac said...

Regarding Dr. Deth's work, I'll have to look at the article. I tried to download it from the Northeastern site provided, but for some reason only the first page of the PDF was readable, and I get a message about a missing or corrupt font. I'll have to look for it at work on Monday. However, from the abstract, I don't really see anything that implies a direct link to autism; however, I'll read the whole thing next week.

Bye, all, until tomorrow sometime, when I'll check over new comments (assuming I can manage to find time to do so with all the visiting kids that will be in my house).

 

At 6/18/2005 7:06 PM, Anonymous Susang said...

I linked to your blog on DU. Sorry about that, I should've known better. The woo-woos make me and other DU skeptics like me absolutely nutty with their rants. I tried to stay out of this one, but I thought that maybe I could reach just one or two of them. Hopefully one or two DUers read your post and decided not to buy into the Salon article's misinformation.

The ironic thing (at least for me) is, that I am actually legitimately allergic to thimerosal. When I first got my soft contact lenses back in 1979, thimerosal was used as a preservative in saline solution. A few days after getting my first pair of lenses, I awoke to find my eyes crusted over and swollen shut.

My mom rushed me to the opthamalogist, where I was told that I was allergic to the thimerosal in the saline solution. I was sent home with a week's worth of eye drops and condemned to years of mixing salt tablets and distilled water.

 

At 6/19/2005 12:45 AM, Anonymous Eric Wallace said...

As the father of a 10 month old, I became quite interested about a year ago in the rumors I had heard about vaccine safety. I spent quite a bit of time researching on the web, and finally came to the conclusion that there was more or less nothing to it. So I guess I take some issue with this claim:

Further goes to show how laypeople (RFK Jr included) are unable to effectively evaluate research.

I am an engineer, so I'm a layperson in this area, but I feel I'm quite capable of evaluating research (at least at a high enough level to judge its quality, even if I don't get all the details). After my experience doing web research on this topic, though, it's not that hard for me to imagine how many can come to the opposite conclusion. Here are a few problems that I think ought to be addressed:

(1) There is a lot of bogus "research" and "data" floating around out there in web land. Those promoting the vaccine/autism link are brining the full power of the web to bear on getting their message out. On the other hand, most of the quality scientific research is in printed or online journals, hidden behind expensive subscription fees. Thus it is nearly impossible for the layperson to read the primary sources. I have become an advocate of efforts like the Public Library of Science, an open access journal. I also believe there is some legislation kicking around to require open publication of government funded research; I hope this succeeds. All I can say is thank goodness for the Institute of Medicine, which made its reports available online for free; it was pretty much the only quality commentary I could find on the "other side" of the vaccine/autism debate.

(2) The IOM's information, though good, is, I suspect, pretty raw for most people to digest. But it seems to me there is very little effort at genuine public relations on issues like this (am I missing something?). I've recently become a fan of RealClimate, a "blog" by climate scientists who explain their research and/or debunk popular theories about climatology. But, they do this in their spare time. Why not do this kind of thing for real? Why shouldn't the CDC (and other agencies) pay some scientists to interact with the public in real time, and answer their questions in language they can understand (not just canned FAQs and press releases)? Unforunately I found that the few sites that advocated for vaccines did so in such a blindly positive way that they probably hurt as much as helped. Many essentially claimed that vaccines are "perfectly safe". Well, they're quite safe. But they're not perfectly safe. Most people realize this on a gut level, and when they read it they begin to think they're reading an advertisement, and not a scientific assessment. Sadly this kind of thing only feeds the conspiracy theory.

(3) Wow, this comment is getting huge. I was going to say something about education, but I think it's pretty self evident. We need to get students looking at real examples of research, and talking to real scientists, as early as high school. Then maybe more laypeople will have the tools they need to evaluate science.

 

At 6/19/2005 2:05 AM, Blogger Tim said...

Hmmm, chelation as a treatment for autism. Looks like an example of what one frequently sees with alternative health treatments and so on, namely that a treatment can cure a large number of problems even though they seem unrelated. "Take our Getyouwell C tablets and cure yourself of anemia, hypertension, chronic constipation, cancer, Tourettes...."

There's a chelation clinic here in Saskatoon, and amusingly its located across the parking lot from a Taco Time fast food restaurant. So after you have your blood chelated of cholesterol you can go order a taco and start building it up again. (The Taco Time was originally built as a Country Style Donuts shop.)

 

At 6/19/2005 2:22 AM, Anonymous Michelle Dawson said...

The 700% increase in reported cases of autism in Iowa beginning in the 1990s is NOT a coincidence.

This increase was no doubt drawn from the IDEA child count statistics (the Diva can berate me if I'm wrong).

1991-92 was the first year autism was an IDEA reporting category. Before that there was no autism reporting category. The reporting of autism was therefore not common.

Because "autism" is a valid category (autistics exist; there are a lot of us), the numbers increased dramatically once such a category existed. Just as they did in "traumatic brain injury", which jumped 5059% within a decade of being added as a category the same year as autism. This is more than three times greater than the percentage increase in autism over the same period (Gernsbacher, Dawson & Goldsmith, in press).

Does thimerosal cause traumatic brain injury also?

In any case, while the increase in reported autism cases was not related to thimerosal, it was not what can be called a coincidence either. And using the IDEA child count statistics (which vary wildly from one state to another) as epidemiology is rotten science.

 

At 6/19/2005 3:25 AM, Anonymous Michelle Dawson said...

For clarity re what Kaethe Douglass wrote, I realize she is saying that the increase in autism and the increase in thimerosal in childhood vaccine schedules was coincidental. I agree; I was just pointing out that there exist excellent and quite precise reasons for autism to have increased when it did in the IDEA child count statistics. This did not happen out of the blue. It was predictable; it should have happened and did.

 

At 6/19/2005 6:38 PM, Blogger Rob Helpy-Chalk said...

Orac, thanks for replying to my question. I suppose I was arguing against a straw man. I was more reacting to a perceived tone, than anything you had said.

Having not read any of the evidence on the issue, I could only react to the form of the debate, which follows the pattern of all toxicity debates ("The scientists have a conflict of interest!" "Trial lawyers and professional expert witnesses have a conflict of interest!") The form of the debate made me instantly sympathetic to people like JFK jr, but I am not either anti-science or anti-vaccine. Hence my question.

 

At 6/19/2005 8:19 PM, Blogger Orac said...

Susang:

Don't worry about it. You can post a link to the DU for any piece I write any time. The day I can't handle a person like the one who didn't like the one who didn't like my post very much is the day I give up blogging.

Besides, it brought in a fair amount of traffic. ;-)

 

At 6/19/2005 9:34 PM, Blogger Ozma of Oz said...

I hold science in the highest regard. I had absolute confidence in modern medicine before my daughter was diagnosed with Autism. Your attitude is exactly the kind I have encountered over and over from all kinds of doctors and specialists. You said some parents "believe" their child has been helped by chelation, like you feel sorry for them for being such idiots to believe such nonsense. This attitude is very unhelpful and frankly offensive. The neurologists, psychologists, etc. That we took our daughter to gave us no help, no hope, nothing. They said she has Autism, there is no cure, we cannot help you, have a nice life.
If you would have told me 10 years ago that I would start believing in very carefully researched (by myself) and chosen alternative remedies I would have laughed and said something about quackery, but the alternative remedies for Autism that are often mocked by mainstream doctors actually work. I have seen amazing results from several different therapies. ( I will not list them for you to mock, I have heard it all before.) How can you so smugly accuse these parents of stupidity? Most of the parents of Autistic children that I know are very smart, careful people. How can you smugly say that their "anecdotal" observations of their own children have no merit? It is attitudes like yours that keep the right research from being done. As long as doctors feel Autism is "mysterious" and "uncurable" it will remain so. I applaud the parents who take a proactive approach in the face of the mockery of the doctors who make no effort to help, but only criticize their daily desperate struggle for health for their child. And by the way, all four of my children had terrible reactions to vaccines- one almost died- the panic is not unfounded, vaccines should be researched more by people who do not have a monetary stake in it. Thanks for reading.

 

At 6/20/2005 2:48 PM, Anonymous Dan said...

It seems to me, trying to find some logical common ground between the believers and nay-sayers on the autism threads here, we can agree the following:

1) Thimerosal is a potentially dangerous substance that had no place in vaccinations to begin with, and certainly not now, now that it has come under serious question.

Kennedy's article was not only about autism, but also about the continuing export of vaccinations with thirmerosal to other countries. Let's keep this in mind.

2) As for the connection of mercury (through vaccinations or environmental causes) to autism, it seems to me that there is only circumstantial evidence supporting this, but that this evidence deserves investigation. Let's not forget that before extensive trials and studies are done, most evidence is usually anecdotal and/or circumstantial.

As a personal comment, I would like to say that I have been disgusted by the tendency of the "nay-sayers" on these threads to dismiss comments by parents and those with direct experience of autism and its treatments as "not scientific". Of course they are not scientific! But one would hope that those with the intelligence and ability to put anecdotal evidence to the test would keep an open mind and do so, before dismissing it outright in such an arrogant manner. "Scientific" means what is known and proven--a very small sector of life. Let's keep some respect for what we don't know, so that we can learn about it (not to mention be cautious of it.) Arrogance has no place among real scientists.

I also think even the most forceful nay-sayers must admit that there is currently no hard, unbiased scientific evidence that mercury is NOT related to autism (note the difference between "related to" and "causes"--and please don't make the matter a straw dog by stressing the latter.)

Now, let's put the burden on you to prove that. Until you can do so, I think you will have to admit that your arguments, whatever methods of persuassion you use, are only selectively "scientific."

I'm in favor of an open mind and investigation.

 

At 6/20/2005 3:06 PM, Blogger Autism Diva said...

Ozma,

What you describe is doctors who in some cases made dire predictions that were unfounded. Parents didn't listen. That's great.

Some autistic kids (kids with autism) change dramatically over time. Without big intervention plans.

If the parents of a child believe there's no hope they might not work hard at exposing him to experiences the child can learn from. Autistic kids learn differently from typical kids. One of the big experts on that is Michelle Dawson, but she's not the only one studying autistic cognition.

IF autistic kids get what they need, the right amount of stimulation and the right amount of peace and quiet and solitude, they will learn. They might need medical help, they might need speech therapy, they might need to learn sign language or use a keyboard to communicate in English. The are communicating from birth but maybe their family members aren't picking up on what the kid is "saying". MA Gernsbacher has a case study that is wonderful about an autistic child who doesn't talk but still communicates.

In the original group of Kanner's 11 "Kanner autistics" in his follow up study from 1971 (available on neurodiversity.com) he found that 2 were employed, one in a bank as a teller or something, and the other as something like a machinist. Kanner lost track of 2 of the subjects, and the rest didn't have jobs.

So maybe 20 percent of "Kanner" autistics, the classic kind of "lost causes", grow up to be fairly independent or very independent, WITHOUT chelation or other biomedical interventions.

Michelle Dawson pointed out on a different Orac Knows thread"
"Szatmari et al (1989) suggests that Mr Kirby should look for his hordes in university records. In a follow-up of autistics diagnosed as children before 1970, 7 of 16 had university degrees (one was an MBA)."

It's unlikely any of those autistics who went to a university were treated with biomedical treatments, it's ridiculous to think that any were chelated.

Michelle is and was a "classically autistic" person. She doesn't pass for normal. Autism Diva has met and spent an hour or two with Michelle. This is a woman who almost never makes eye contact, among other proofs of her diagnosis. Her father has verified that she was an autistic child, and he's a famous mathematician, with no reason to lie. But that shouldn't even be necessary.

It's just that people think that since she didn't get heroic interventions to combat her autism she can't be a scientist, or even talk or write. Which goes back to doctors giving parents the wrong information if they are saying, "your child is a total loss and should never have been born."

 

At 6/21/2005 1:55 PM, Blogger Ozma of Oz said...

Diva-
Your point is about Autistic people going on to greatness is true and valid- but why can't these people also try biomedical treatments that will make them feel better? Why should they suffer if treatments are available that will help them? Why should they struggle with autistic behaviors like lack of eye contact which put them at a disadvantage in many social situations ( like in a job interview for example)if these behaviors can be lessened with a biomedical approach? At the risk of being called a wacko, let me share: My husband (great guy, love of my life, etc.) Is fairly sure he has Asperger's, since my daughter was diagnosed, he is finding the same problems for himself. He made the brave decision to start using some of the biomedical treatments I have been using with great success with my daughter. He was very skeptical, he is a scientist himself. His totally unscientific, anecdotal observations come to this: He feels like a great fog has been removed from his mind, he used to be terrified to talk to people, make calls, etc. now it is alot easier, he is less nervous and twitchy, his routines have loosened up, it is no longer his way or the highway. From my end I can tell you he is a changed man. He feels better, he is much easier to live with (and he was pretty great already but the concrete thinking could get tiresome) and we have had some of the best and easiest conversations of our whole 14 year marriage. Anyway- according to you, he should have to suffer with all of his social anxiety and still try to teach everyone around him to listen to the way he communicates. Your approach is very hard on the people who actually suffer with this.

 

At 6/21/2005 4:56 PM, Anonymous Anonymous said...

I am a pediatriciand and epidemiologist who worked at CDC, has attended ACIP meetings, etc... and a father. The link with autism is dubious (and sociologically-politcally linked to the old DTP-fever-seizure disorder "debate"), but I still don't want mercury (known toxic in the cumalative does received) repeatadly injected into my kids when there are better alternatives out there (and sitll happy to have acellular DTP compared to old type). Inudustry has delayed making changes in U.S. due to usual short term cost and corporate inertia. Kennedy's article has problems, but the vaccine industry has acted in unethical ways before and about the broader issues of thiomersol's potential toxicity. Alas, CDC's record in go-along to get along group think is not good (abetting DOD misdirection of agent orange studies, Mag gas additive, dioxin, condoms & HIV transmission, abstinance only. This is not as one sided as this site implies.

 

At 6/21/2005 11:29 PM, Anonymous Alexis said...

I agree that the evidence for a connection between thimerosal and autism and other neurological disorders is weak. But that doesn't mean that there was no good reason to remove thimerosal from vaccines. The reason that methylmercury (found in fish) is a public health concern is not because it causes autism, but rather that exposures create a risk of slightly decreased neurological performance, falling short of a "disease," among a large population of children.
Given the level of exposure that could be reached by multiple vaccines that contain thimerosal, it is legitimate to be concerned that the same could be true of ethylmercury. So even in the absence of a connection with autism, taking ethylmercury-containing thimerosal out of vaccines was the right thing to do.

 

At 6/22/2005 6:06 PM, Blogger Autism Diva said...

Ozma,

Where did this come from - "Why shouldn't they try treatments that could help them feel better..."?

It sounds like a very off-the-wall question to Autism Diva.

As for "biomedical" one supposes that taking prozac could technically be considered "biomedical". It does affect the biology of the person...

But maybe you mean rubbing outlandish, not FDA approved CHEMICALS like: 2,3 dimercapto propane sulfonate, on person or having them take it internally... some thinkg that's somehow "wholesome and natural".

Autism Diva has no idea what your husband did that made him feel better.

Maybe it was enzymes or vitamins and not a "chemical".

On a different board a mom with 2 autistic kids who doesn't believe in the mercury thing (and who thinks she has AS herself), but likes alt med stuff in general... told us all how wonderful she felt after taking "Bach's flower remedy" . It's like very watered down flower extracts or something.

Wanna bet that the effects wear off and that it was all placebo? Maybe not, but seems likely.

Autism Diva has been a pretty heavy-duty alt med type person in the past, she has taken lots of herbal remedies and likes massage therapy and that sort of stuff. Autism Diva uses echinacea (don't tell ANYONE!).

Autism Diva is really, really happy for you and your husband. It's always good to get an idea of why a person is very different and makes one more realistic about what to expect. But mercury didn't make your husband "Asperger's" and chelating him isn't going to change it.

Anyone can feel better if they rectify some problem like an infection or allergy, or if they just decide that something should make them feel better.

Autism Diva thinks that some autistics might need antidepressents and that eye contact should be optional or discouraged like it is in other countries.

Autism Diva

 

At 6/24/2005 8:39 PM, Anonymous Anonymous said...

I'd like to point out to the "pediatrician" above that all pediatric vaccinces produced since 2000 do NOT have thimerosal in them, and there have been unit dose containers (thimerosal-free) available for all vaccines since at least the middle 90s.

But of course you already knew that.

 

At 6/27/2005 7:47 PM, Anonymous Anonymous said...

I read these blogs and everyone seems to think that Kennedy was lying. Yet the IOM quotes seem to indicate that the IOM had made up their mind that thimerosal does not cause autism BEFORE they ever got started.

Here is a link to the full IOM report http://www.nomercury.org/iom/iom.pdf
Here are some specific quotes that I find most concerning:

Page 32:
Dr. Kaback: "We have got a dragon by the tail here. At the end of the line, what we know is -- and I agree -- that the more negative that presentation is, the less likely people are to use vaccination, immunization, and we know what the results of that will be.

We are kind of caught in a trap. How we work out way out of the trap, I think, is the charge."

Page 34: Dr. McCormick
"I am wondering, if we take this dual perspective, we may address more of the parent concerns, perhaps developing a better message if we think about what comes down the stream as opposed to CDC, which wants us to declare, well, these things are pretty safe on a population basis."

Page 72:
Dr. Stratton: "We said this before you got here, and I think we said this yesterday. The point of no return, the line we will not cross in public policy is pull the vaccine, change the schedule.

We could say it is time to revisit this, but we would never recommend that level. Even recommending research is recommendations for policy.

We wouldn't say compensate, we wouldn't say pull the vaccine, we wouldn't say stop the program."

Page 95 Dr. McCormick "What I am trying to get at is, do we want to simply, on our gut, say looking at the significance of the wild disease that you are protecting, and the seriousness and potential association with the vaccine - because we are not ever going to come down that it is a true side effect - is that going to be sufficient for you to judge public health impact?"

 

At 6/28/2005 12:08 AM, Anonymous Anonymous said...

I would like to second the comment made by someone named Eric Wallace - I'm here not because I am antivaccine or antiscience or anything of the sort. I dont have a position one way or the other nor am I vested in the outcome personally. I have a friend with autistic children and I pay attention to news about autism. I read the Salon article with interest, and went looking for more information. Not to back up any conclusions I had already made but simply to find out more about an issue that from the mainstream public's perception is not clear. One week there's a news story that debunks autism and thimerosol, another week there's a story that links the two again. It's confusing. So I find my way here (the wonder of the web) and I discover an interesting discussion. Because I am curious about the risks of thimerosol does not mean that I dont respect science, nor does it mean that I worship at the alter of trial lawyers.

It's all about balance. Science gave us penicillin but it also gave us the atomic bomb and DDT. It is good to remember that once in a while. The average person in the US is just like me - looking for answers that make sense, that hold up to scrutiny, that don't sound hysterical or ridiculous and which seem reasonable. I dont want to be a bot. I want to think critically about things.

The points Mr Wallace made are good ones. There is a very real skepticism out here on Mainstreet USA about pharmaceutical companies and multinational corporations and a lot of that is justified. There is suspicion about the revolving door between people in the government and companies. And there is added skepticism because there hasn't always been transparency in the policy/politics process. There's innate human suspicion about things we dont understand. Because of medico-speak, there is a major communication barrier between scientists and laypeople. And finally, when you talk to a parent, and they insist their child was normal until they got vaccinated, that's a very powerful argument. Although it is widely known that eyewitness testimony is unreliable, it is still powerful and it packs a wallop.

All of these things give activists with an agenda the advantage in the dialogue. But maybe people should have faith in the herd - we can find our way if we are given the information to sort it out. But we aren't going to make much progress until science figures out how to effectively get their message out.

Dismissing anyone who doesn't immediately dismiss the Salon article serves no purpose. Sure the antivaccine people will grab this and run with it, but the big group of people in between the two sides is the one you need to move - not the crazies.

Orak mentions that his site is getting more hits than ever before - did you all think those hits were from scientists? Didn't it occur to anyone that Joe and Jane Public might come calling and a primer for us might be in order?

 

At 6/29/2005 9:39 AM, Blogger Stephen M. St. Onge said...

      Gee, after criticizing you harshly in the past, I now have to say: well done.

      I have never investigated the question of whether mercury has a link with autism, but if it does, properly designed studies should find it, and such studies would be repeatable.

      And, if mercury in vaccines causes autism, then removing the mercury will lead to less autism.  I haven't investigated Canadian or Danish data, but, assuming you report it correctly, then it is strong evidence that there is no connection.

      (I want to say that I have no reason to doubt the accuracy or your reports about Canadian/Danish data.  It's just that I've learned to never trust a secondary source.)

      Gee, I feel bad not having anything to bash you for.  Well, here's a nitpick: when you warned people that the transcript of the conference was a "big file," you should have added 'and it's in the loathsome, never-to-be-sufficiently-damned pdf format.'

      But that's about it.  I say again, well done.

THE SAUDS MUST BE DESTROYED!

 

At 7/25/2005 2:50 PM, Anonymous Anonymous said...

http://www.mercola.com/fcgi/pf/2004/sep/22/blaylock_vaccine_coverup.htm

 

At 7/26/2005 3:01 PM, Anonymous HCN said...

That is so very funny. Blaylock may have one time been a real doctor... but now he spends his time selling supplements.

He used to claim to be on the faculty of the "Medical University of Mississippi"... until the real School of Medicine of Ole Miss sent him a warning letter (if you google his name you'll see lots of websites other than his still claim it).

 

At 11/01/2005 2:36 AM, Blogger wade said...

I do not have breast cancer. In fact I don't really know anyone who has been stricken with this horrific disease. I am aware of numerous walk-a-thons to benefit its awareness and on occassion will donate $20. In regards to the latest research about how to prevent/cure breast cancer I must also profess that I have no clue. So, what is my point??? Pretty simple - if I were to get on some Blog and offer up my opinions on the latest proposed remedies for breast cancer and tell these "poor" women to quit wining and just get on with their lives, then quite frankly I should get my balls kicked in.

To all those people who feel the need to bash proponents of looking into root causes of autism and potential cures - I have a simple request - spend a day with an autistic child and even more importantly PLEASE make sure your children get MMR shots without mercury.

Is there a link between mercury in vacines and autism? Heck, I do not know. But based on what I do know it seems to makes sense, especially given the latest research by Dr. Richard Deth (and yes I know much of his research is funded by SafeMinds which wants to sue MMR vacine drug companies).

I admire parents and researchers who are passionate about helping kids with autism and preventing it in the future. Science or withcrsft - who cares.

I just hope posters who have no association with autism will do more listening and less commentary on how righteous they are.

Orac - even though I do not have breast cancer I am not myopic enough to have an opinion on breast cancer research. It is simply not fair to the people who have had to or are currently dealing with it.

You know nothing about autism - so you can benefit your self by just listening.

 

At 11/01/2005 8:46 PM, Blogger Orac said...

Give me a break. It's a fallacy that you have to have direct experience with a topic in order to have an opinion on it. The level of experience may influence your assessment of a person's opinion, but, quite frankly, your tactic is a transparent attempt to discredit the opinion of anyone who doesn't have "personal experience," and I don't play by those rules.

Also, you don't know that I don't have direct experience personally dealing with autistics. In fact, I do have such experience. It's not extensive, but it's there.

 

At 11/27/2005 6:16 AM, Anonymous Anonymous said...

Thanks orac for allowing different points of view into this debate otherwise it wouldnt be a true debate now wouldn't it.

After reading kennedy's article, i still didn't come to any sort of conclusion regarding there being a government conspiracy to hide evidence and cover their backs, but i did agree on a few points, that being: keeping secret the link between thimerasol and autism is not that great in fact makes it seem more suspicious.
i know the argument against this is that putting this kind of information into the hands of careless people could cost alot of money, and put perhaps unwarranted fears into the minds of the public, but isn't that why we have a court system. If your innocent of something surely your not going to be convicted of a crime in the court of law? just throwing it out.

regarding the subject of chelation: whether or not it works is not really an issue when your talking about thimerasol or mercury poisoning, the parents of these children can find out for themselves if it works.

From my own experience with an autistic child, chelation didn't really seem to do anything but since there really isn't any known "cure", then why not try it even if it helps alittle.

also, even if it turns out there is no link between autism and thimerasol, a conclusion that i have not yet come to because of a lack of evidence either way, then the issue would be, in my opinion, why these corporations went to such extraneous lengths to keep the lid shut on this topic.

If there is real evidence to show either way that thimerasol or mercury is or is not a cause then just show it. don't complain about the other side as being "psuedo-scientific" a term that was used numerous times against the Kennedy's article but I failed to understand since the definition for something being psuedo-scientific is when a study claims to be scientific but really isn't. this definition could be given to infomercials and studies which already have come a pre-conclusion.
In Kennedy's case, his paper did not claime to be scientific, but instead listed several sources of interest anyone could look into with a un-biased mind.

 

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