August 14, 2005

The Hurry-up Offense

Dear JP,

To finish addressing your concerns about ‘mercury moms’:

Sure, activists can point to studies of "autistic" mice and overstate their relevance to human autism. They can claim the Burbacher study shows that mercury harms the brain, when there's a substantial debate as to whether the amount of inorganic mercury found in that study is in any way significant. (or moreover, if the rapid clearance of ethlymercury from the body is MORE relevant to CNS protection).


Just an aside, the working theory is that these children have a genetic inability to excrete heavy metals from the body, so it may be that no amount of any kind of mercury can be tolerated by children like mine. In Chandler’s case, the treatment that he is receiving and responding to seem to fit that hypothesis.

And when they get really bold, they can even mine the VAERS database like the Geiers did, knowing that 80 percent of the VAERS claims that vaccines cause autism came AFTER the joint AAP-CDC statement on thimerosal in 1999.


This paragraph seems to suggest that you take issue with these studies, but it may just be that you have concerns about the way they are being used or that their conclusions are being overstated and poorly used by those in the anti-thimerosal group.

Can you offer clarification as to which position you are taking or if you are asserting both? I was not quite clear.

Can you give an example of your concerns so I can get a concrete understanding of the problem as you see it?

If your concern is that people are overstating the conclusions of one or more of these studies, I say, well of course they are. That’s what people do. They want to make more or less of studies depending on what they want to see and believe. That is human nature.

I think that our job in tackling this issue is to try to dial things back, look at what the studies really say and what they really don’t say, and respectfully remind people of that.

For example, in my previous comment, I mentioned many of the things that I found wrong with the Denmark Study, its conclusions and its application in the U.S.

What I didn’t mention is what it DOES tell us and what it CAN say.

What it can be used for is to study the prevalence of inpatient cases of autism in the country of Denmark between 1971 and sometime in the 1990’s (up until they began to make changes to the database). It can also tell us about the prevalence of autism in the entire country (inpatient and outpatient) from the point in time in the 1990’s that the database stabilized in what it measured, until the study was completed in 2000. (This is all assuming of course that the researchers’ conflict of interest did not lead them to skew the study in other ways, but for the purposes of this conversation we will give them the benefit of the doubt).

It is not really one study, but two. It comes apart at the point in time when the database changed what it actually measured, but it came back together. Unfortunately for the purposes of the question it purports to answer, the change was made at the same time that thimerosal was removed, so it screws up measuring what we want it to.

This makes good sense in the context of the real world. A country begins to be worried that thimerosal might be contributing to autism. The responsible thing to do is get rid of the thimerosal and start keeping better track of cases of autism. To do otherwise would have been wrong.

Oh, the research we could do if we didn’t have to worry about pesky ethics.

Another question that the database could be used to measure would be the rate of inpatient autism from 1971 to 2000. After all, the database should be able to sort out any outpatients so that they could be excluded from the study. It is not as powerful a question as the original one, but the results would be reliable.

My suspicion is that the researchers must have thought of that, but decided against it for some reason.

To emphasize the point I made in my last post about Verstraeten’s Monster, when you take that study and try to see what it can be used for, you find that, in contrast to the Danish Study, it cannot be used for anything.

As far as anyone knows, nobody other than the Geiers have come from the "outside" to apply to use the Vaccine Safety Datalink, which is now being administered by the National Center for Health Statistics. And while access to that data might be harder to come by these days, it's not like that's the only avenue to do such a study. Basically all Managed care organizations have statisticians and epidemiologists on staff, and most have foundations in place to support this kind of research.


Then you would think that the HMOs would do a few of these themselves, as it would exonerate the medical industry from liability if a plethora of American studies showed no relationship. Why aren’t they being done by those who want to show there is no link?

(And believe me, if a study illustrated childhood vaccination was NOT cost-effective or increased risk of chronic, intractable conditions, managed care organizations would be all over that.)


Except that there is a chance it could prove liability and they would have to spend a fortune fighting off law suits of parents and patients. It may also drive up their costs as vaccine manufacturers would certainly have to pay through the nose to those injured. Those costs would likely be passed onto said HMOs.

In addition, insurance does not currently cover costs of autism, so it may be that the status quo is an attractive position at the moment for them.

So maybe Safe Minds could take the $100,000+ per year they're using to fund studies on cancer cells and mice and put it towards doing their own epidemiological study to disprove the ones done in the U.S., Denmark, Sweden, and the U.K.


They won’t, and they shouldn’t. Here’s why.

The Verstraten Study took 4 years, something like 25 million dollars and the best researchers the government had to offer, and could not come up with a decent study to show that there was no link between thimerosal and NDDs, despite the fact that they were highly motivated to do so as my last post demonstrates.

Since that is the case, and since epidemiological studies are for the purpose of formulating questions for in vitro and in vivo studies, it would be a waste of time and money for Safe Minds to spend the small amount of research funds that they have on proving an answer to a question that will not get them one step close to a cure for autism.

As I have mentioned, epidemiological studies are somewhere around step 2 in the process of answering a question as to what is causing a disease and how to cure it. The state of current research into autism is now around step 5 or 6. Why would anyone want to go back to step 2? Step 2 is not even their job. It is the CDC’s job.

The assumption has been made by parents that if all the governments best efforts add up to Denmark and Verstraten, then we should go ahead and assume that they don’t really want to know the truth about what is going on in the population, or that don’t really want to know what the true effect of thimerosal are on children.

If they did, there is a whole lot of research they would be doing, research that would put this question to bed. Despite parents pleading for years for them to do this research, they just won’t.

Since our government, who has many reasons not to indict thimerosal, cannot in its best efforts exonerate it, that there is probably an epidemiological study that would find a link, but the government will not carry it out.

Therefore, parents like me have assumed that there probably is some sort of epidemiological link, and moved on with out them.

We have skipped stepped 2 and decided that instead of working from the top down, we will start with the case studies and work our way up. This approach is yielding real results. Results like I am seeing in my son’s recovery.

But they're not doing true epidemiological research, are they? Do they not want to know the answer?


Please forgive my frankness in addressing this.

It is not our job to get that answer and we don’t have time to get that answer.

It is all well and good for you and Skeptico and Orac to debate epidemiological studies for another 5 years, but we have children that need treatment now. The more time that passes, the lesser their chance of recovery.

Here is what the scenario looks like from my side of the issue:

My child is in a burning house, and you seems to be suggesting that I should, at my own expense, commission a study to see how often house fires are the result of faulty wiring.

I hope that you can understand why, at this point, I am going to go ahead and start ignoring you and go straight to the floor plans to find a way to get in and rescue my child.

5 comments:

shaunasworld said...

I much prefer "mercury mom" to "refridgerator mom" I have been told many times to cool my heels because we will not have in my lifetime all of the facts, or any real treatment or cure. I love the analogy! Becuase we were so naive and uninformed for so long I now know I've wasted my daughter's precious time.

jess me said...

ginger,

Just checking in to ask if you are also known as
jennifer on huffingtonpost
and
Emma M on huffingtonpost
and
neurodiversemama
or just neurodiverse
on the aut advo group where Emma M admits to lurking.

I would appreciate an honest answer

Jennifer lambasted the autistics who are proud of their being autistic and who dont' think of themselves as toxic

Emma M came along from the same email address and tried to be condescending and consoling and full of "understanding"

neurodiversemama is just lurking and misrepresenting what she is reading on the aut advo list, which pretty much makes her a stinky little thing she's using a similar address

you might not be that person, but it does seem like it's worth asking

too bad jennifer and Emma M are so mean and vicious toward people much like your son, right ginger?

pretty good joke to mock and try to humilate and misrepresent people who have had more mocking than you could ever dream of in their lives

don't you agree?

you're such a nice lady, ginger

Ginger said...

Jess,

I have never posted on HuffPo, I don't use any pseudonyms when I write, and I do not have any hostile feelings toward the neurodiv groups.

too bad jennifer and Emma M are so mean and vicious toward people much like your son, right ginger?

It is to bad. I have not written about the neurodiversity side of things, but I have had it on my list of things to write about. The only mention that I have made to or about was in a discussion with Kevin Leitch on Skeptico's site which can be seen here: http://skeptico.blogs.com/skeptico/2005/08/sticking_up_for.html

pretty good joke to mock and try to humiliate and misrepresent people who have had more mocking than you could ever dream of in their lives

Not a good joke. Ugly. Honestly, the thought of someone treating my son like that one day gives me sucking chest pains.

Just to go on record with my thoughts, I think that I have a great deal to learn for the neurodiv community. The first time I stumbled onto one such site my first thought was, 'wow, hadn't even occurred to me yet that adult HFA's would be hurt by the assertion that autism is a disorder’.

My son is three and I have barely gotten to think about what he might be struggling with in preschool, much less high school and beyond. But it seems to me that the neurodiv community is a wealth of information for me.

I have a lot more to say about this topic, and I may put it on the front burner since you have brought it up.

Please believe me when I say that I never want to give the impression that I would be the kind of person to attack anyone, much less adults with my son’s condition.

In the interest of full disclosure, my first name is really Jennifer. That is what is on my birth certificate and driver’s license, but I have been called Ginger since birth and most of my friends don't even know that.

The name Emma was at the top of my list for baby names if I had a girl, but that is as far as that association goes.

Suffice it to say, if the post does not say Ginger Taylor on it, then I didn't write it.

Can you send me the link?

Also, what was it that made you think that I wrote it?

Ginger said...

and also... thanks for just coming out and asking me.

I have tried on this site and when commenting on others to be as transparent as possible. the last thing I want is for that to go to waste if someone suspects that I am really playing a part and being vicious elsewhere.

Is there a name for that? Having an arugment with yourself on lists under two different names?

jess me said...

http://www.huffingtonpost.com/theblog/archive/david-kirby/autism-mercury-and-the-c_4133.html

That's where you'll find "jennifer" and others lambasting the neurodiversity "whack jobs"

http://www.huffingtonpost.com/theblog/archive/david-kirby/my-take-on-tim_5374.html

thank you for responding

I hope you do post something that is respectful to the adults with autism