Thursday, July 28, 2005

Playing at the fringes of the autism/vaccine issue

Posted by Craig Westover | 5:40 PM |  

A post on the “neurodiversity weblog” stemming from Lisa Randall’s letter to the editor responding to my June 22 column chronicles some activities on the Evidence of Harm discussion list, of which like the author of the post I disapprove. Randall’s personal information was posted on the list, which is maintained by parents that believe their children were damaged by vaccines containing thimerosal. As a result, Randall received a number of angry calls from parents, which I agree she should not have had to deal with.

The initial posting of Randall's personal information and the letter she wrote to the Pioneer Press are each an example of people losing focus on the science that will untimately decide the issue of whether or not thimerosal (mercury) produces autistic symptoms in children. I've responded to this post, which is I believe although factually correct as to the events it describes, is misleading. I also feel it is a missed opportunity to address issues rather than castigating people based on their beliefs.

The post reads as follows --
Last week, in Censorship, Incivility & Chronic Suspicion, I offered an account of two particularly nasty episodes on the Evidence of Harm discussion list, in which private citizens were targeted for ridicule, harassment and investigation by anti-thimerosal campaigners, in retaliation for expressing their dissenting opinions about the controversy over vaccines and autism. Today I provide an expansion and update on the first episode, the tale of Lisa Randall of St. Paul, Minnesota.

I had originally become familiar with Ms. Randall’s name when her letter to the editor of Salon in response to Robert F. Kennedy, Jr.’s article, Deadly Immunity, was published on the same page as mine. Now, Ms. Randall was fortunate enough to see her letter to the editors of the St. Paul Pioneer Press published in their July 3 edition:

Craig Westover is wrong

In his June 22 column, Craig Westover writes, “The thimerosal connection to autism is first about science.” Actually, it’s about hysteria and money.
Hysteria distilled in the groupthink of autism advocacy groups that insist thimerosal causes autism—contrary to all reputable science—and cast anyone who says otherwise as a member of a global conspiracy to poison children.

Money for shady personal injury lawyers who lick their chops at the prospect of presenting a jury with a disabled child, some sophisticated-sounding pseudoscience, and the ominous fact that certain states have banned thimerosal.
Westover’s attempt to elevate this controversy to something more than a sociopolitical phenomenon crashes like a lead—or should I say mercury?—balloon.

Lisa Randall

Craig Westover promptly prepared a new blog entry, Calm down and explain my hysteria, commenting, “Ms. Randall, should be thanked for providing some balance to my column by sharing a firsthand example of a considerable amount of hysteria and paranoia on the part of one who denies there is any connection”—a surprising response, given the fact that her letter could fairly be called “sharp,” “sassy,” and “well-written,” but hardly “hysterical” or “paranoid.”

That evening, a call to action was sounded:

Date: Sun, 3 Jul 2005 23:38:20 -0500
From: “Tim Ziegeweid”

Dear EOH Listmates. The following letter to the editor appeared in the 07-03-05 Saint Paul Pioneer Press. It is written by Mrs Lisa Randall who lives at (deleted). Her telephone number is (deleted) should you wish to call her and express your opinions on her thoughts… If any listmates would like to call Lisa Randall to express their thoughts you may call this bitch at (deleted). Or you can write to her at (deleted). .... Apparently Lisa Randall is some type of lawyer… I would assume that she is probably working for Big Pharma in some capacity. I called Lisa this morning to get her side of the story but her husband would not put her on the phone for some reason. PLEASE FEEL FREE TO POST THIS ON ANY AND ALL MERCURY-AUTISM LISTS! I HOPE THAT SOMEBODY GETS LISA ON THE PHONE AND FINDS OUT WHAT JUST WHAT SHE KNOWS ABOUT THIMEROSAL AND AUTISM! Tim Ziegeweid.

The list moderator, Lenny Schafer, promptly gave Tim the boot. Investigation of Ms. Randall’s genealogy and presumed ties to Big Pharma continued through the day and night, with No Mercury co-founder Lujene Clark at the lead. On the Fourth of July, after learning that Mr. Ziegeweid had sought to initiate a telephone harassment campaign, Craig Westover urged list members not to call Ms. Randall, but rather to “send an email to Letters to the Editor at the Pioneer Press.” He then went on to “plead (for) a little understanding for Tim. I think a reprimand is sufficient, and I’d urge you to, with a warning, return his group privileges.”

In the meantime, I phoned Lisa to let her know that her personal information had been broadcast by Mr. Ziegeweid on Yahoo. This was not news to her, for in fact, he had called her home seven times on Sunday and once on Monday, to “find out just what she knows about thimerosal and autism.”

Ms. Randall wrote to Mr. Schafer, requesting that the posts containing personal information about her and her family be deleted, but he did not respond. Ultimately, Yahoo’s abuse department stepped in and took care of the job for him. She also contacted the editors of the St. Paul Pioneer Press to let them know what had happened, and was assured that they “never publish letters generated by this kind of online campaign.”
Nonetheless, two weeks later, the St. Paul Pioneer Press generously and inexplicably provided the very instigator of such a campaign 174 words’ worth of space on the July 20 Letters page:

Glutathione causes problems

Because my daughter suffers from thimerosal-induced autism, I was offended by Lisa Randall’s July 3 letter, “Craig Westover is wrong.” She stated that the thimerosal-autism connection is “about hysteria and money.” She also said the thimerosal-autism connection was based on “money for shady personal injury lawyers who lick their chops at the prospect of presenting a jury with a disabled child, some sophisticated sounding pseudoscience and the ominous fact that certain states have banned thimerosal.” Thimerosal-induced autism has nothing to do with desperate parents or shady trial lawyers and has everything to do with a mercury detoxifier called glutathione. Dr. Jill James of the University of Arkansas found that autistic children have a severe deficiency in glutathione, the body’s most important detoxifier of mercury. Children who suffer from a glutathione deficiency cannot detoxify mercury from their bodies.

My daughter received all of her required vaccinations. In her first six months she received 112.5 micrograms of mercury. With each shot her mercury exposure exceeded the EPA-recommended safety guidelines 40- to 50-fold. Sheryl has thimerosal-induced autism.


Ms. Randall promptly submitted a reply:

Timothy Ziegeweid would like us to believe that his daughter’s autism was brought on by thimerosal in her childhood vaccines. He cites a single small study for the proposition that autistics lack the antioxidant glutathione and concludes – with no information about his daughter’s glutathione level – that she must have a deficiency which led to her inability to process mercury and thence to autism. In fact, even if the results of this study can be replicated, they would not imply that glutathione deficiency causes autism any more than they would imply the exact reverse; the only finding of the study is that the two tend to co-exist.

Standing against the theory of thimerosal-induced autism, meanwhile, are five large, rigorously peer-reviewed epidemiological studies using multiple statistical techniques on diverse populations and concluding unanimously that there is no evidence to link thimerosal-containing vaccines with autism. There is also increasing uncertainty about the common belief that autism has become dramatically more prevalent in recent years.

My letter doubting a role for thimerosal in autism, which prompted Mr. Ziegeweid’s response, appeared in the Pioneer Press more than two weeks ago. Maybe he didn’t have time to reply sooner than he did because he was too busy trying to organize a stalking campaign. He posted my letter, along with my name, address, and phone number, to an 800-member anti-vaccine online message board with an exhortation to “call this bitch.” Other members of the group responded by searching public records for personal information about me and my family, and speculating about my motivations for debunking the alleged vaccine-autism connection.

I am happy to clear up the speculation. I am a stay-at-home mom who is concerned that the thimerosal scare may convince parents not to immunize their children. I’ve learned that we need community immunity to protect children who are too young or too sick to safely receive vaccines, and that it doesn’t take a very large share of the population going unimmunized to break down the protection that these children need. In fact, about 1% of children who receive a vaccine do not develop antibodies to the disease it aims to prevent, so even fully vaccinated children like mine are endangered by anti-vaccine campaigns. That’s why I want to see parents getting reliable information on the safety of vaccines.

Lisa Randall

I cannot help but wonder why the editors of the St. Paul Pioneer Press would publish Mr. Ziegeweid’s letter when they knew that he had published Ms. Randall’s personal information on Yahoo, urged his colleagues to call her and to sound the alarm far and wide, and had phoned her home numerous times over the July 4 weekend. I also cannot help but wonder why they have not published Ms. Randall’s reply. Their columnist, Mr. Westover, seemed to take quite personally Ms. Randall’s comments about the anti-thimerosal campaign, going so far as to state that she was “hysterical” and “paranoid.” In a June 2 post to his blog remarking on my letter to David Kirby, Mr. Westover lamented that I had “gone astray by focusing on militant comments, as unfortunate as they are,” and made the inaccurate suggestion that I disapproved of journalists discussing the thimerosal issue. It seems that many of Mr. Westover’s listmates are far more “militant” than he would prefer to admit. Or perhaps he is well aware of their militancy, but feels that parental tsuris gives them license to engage in abusive behavior. In his post requesting that Mr. Ziegeweid’s list membership privileges be reinstated after he violated both Ms. Randall’s privacy and Yahoo’s terms of service, Mr. Westover stated,

“I know that people are at all different levels of rage and reason on this issue. Getting a piece of hate email pales in comparison to what many parents have gone or are going through with their children.”

Considering that Mr. Ziegeweid had already revealed that he had crossed over the line from impulse to action by phoning Ms. Randall at home, I cannot help but wonder whether Mr. Westover feels that “getting a piece of hate mail”—or in this case, eight angry phone calls made to one’s home by an outraged stranger—should not only be considered par for the course for journalists who publish articles on controversial topics, but also for private citizens who express their opinions in the paper for which he writes—just as long as that hate mail comes from people for whom he already feels some sympathy.

My comment to this post follows:

I hope your readers take time to follow the links to my posts and columns, but for those that don’t, a few clarifications.

First—Lisa Randall’s letter refers to a column I wrote that specifically took issue with the tone and the misrepresentation of data in Kennedy’s Salon and Rolling Stone article. The purpose of the column was expressing my opposition to conspiracy theory over science. I do disagree with Randall’s position on this issue, on the science and on the way the government is handling the issue, but, as my column stated and she omitted from her letter, I don’t approve of Kennedy-like tactics or the tactics she describes in the letter—which I stated in the column.

Second—My reference to “hate mail” was premised on the hate mail and phone calls I received in response to my Kennedy column. Although I support the parents position, which I made clear in my column, I received a number of pretty vile responses for having the audacity to criticize Kennedy’s piece. I also received supporting email and some that agreed Kennedy’s piece was “over the top,” but felt that the parents had been put down so long, his approach was necessary to draw attention to the issue. Those responses prompted my hate mail comments in relation to my personal experience.

Third—When I found people were emailing Randall’s home, I immediately posted my disapproval on my site and posted to the list, which I seldom do, again expressing my disapproval. My comment about email to the letters to the editor specifically was an alternative for those upset by Randall’s letter—it was not a call to action, nor was it phrased as the call to action you imply. People have a right to appropriately object to Randall’s comments just as she had to object to mine. As a letter writer myself before having a regular column, I’ve received some of the most vicious racist mail for a column I wrote favorable to a play raising the issue of lingering racism. It’s wrong, but hate mail comes with the territory.

Fourth—I chose to characterize her letter as “hysterical” and “paranoid.” Her references to “shady personal injury lawyers who lick their chops at the prospect of presenting a jury with a disabled child” and lumping all parents into “distilled groupthink” strikes me as being as over the top as Kennedy’s remarks. To classify the parents as “anti-vaccine” is either ill-informed, intentionally misleading or hysterical reaction. Most of the parents that are prominent in the Minnesota movement specifically state they want safe vaccines, not the abolishment of all vaccines. Many simply want an adjustment to the vaccine schedule. You may choose to characterize her response as you will.

Fifth—I did make a request on behalf of Tim to be reinstated on the list. I met Tim as a result of my research on this topic. Several times he has sent me material that I have told him I disagree with and I’ve sent him a number of emails critical of conspiracy theory pieces he’s circulating and the posting of Randall’s personal information. Nonetheless, I also know a little of his family background, his personal situation, his daughter’s, and knowing that prompted my request, which is a far as it went. I don’t know whether or not he has been reinstated. I hope he has, and I hope he’s behaving himself.

Sixth—As you yourself have noted, I have and continue to look at both sides of this issue. I am not completely convinced that the parents are right on this issue, a disclaimer in every column I’ve written on the subject. What I am sure of is that the evidence of harm is sufficient that it warrants more research and attention than government agencies have or are giving it. While government falls back on five epidemiological studies, independent researchers concerned about vaccine safety are pushing the envelop of hard science, looking at how mercury affects the nervous system of young children, how the toxicity of mercury is enhanced or retarded in certain combinations, how mercury is absorbed by the blood, new genetic research. Any one of the hard science studies done in the last five years, with different results, could have conclusively disproved any link between thimerosal and autistic symptoms. None has. That doesn’t make the hypothesis correct, but it makes the case stronger. It shows a courage on the part of researchers betting their hypothesis on every study.

Whatever the ultimate resolution of the thimerosal issue, it is clear that the government agencies involved have not adequately responded to safety concerns. If they had, the parents movement would be losing steam or dying rather than gaining momentum. It is also clear that their safety methodology failed—there is no excuse for injecting the amounts of mercury into children that we do, not realizing it until 1999, not really knowing the impact. If there is no harm, it’s blind luck (which is why the government must rely on retrospective epidemiology to make its case—there is no primary data showing thimerosal in the quantities injected is safe).

Again, I hope your readers will explore the links, which I appreciate you making, to the source documents and draw their own conclusions of intent and fairness. Thanks.

— Craig Westover Jul 28, 06:03 PM #

To be perfectly clear, it is good that the thimerosal discussion is receiving more publicity. Neither side of the issue, however, benefits when the focus is on personalities and accusations. The focus ought to be on scientific research, on resolving the issue, not making a case that one side or the other is hysterical ill-informed parents or conspiratorial poisoners of children.