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December 2010



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First Published Wednesday, 9th April, 2008.

What a Web of actional links we can weave

It’s no longer novel when somebody becomes so interested in a topic that a Web site is devoted to it or when that site draws the occasional legal threat.

But Kathleen Seidel of Peterborough, creator of Neurodiversity.com, has moved into a whole new category.

Her four-year-old, one-woman Web site discusses the link between vaccinations and autism – or lack of a link, in her opinion. Last week, she posted a long, well-researched essay about almost two dozen autism suits, from which she said a Virginia attorney has reaped a half-million dollars in fees.

That same day, she received a subpoena from that attorney, who is representing families seeking millions in damages from Bayer Corp.

The subpoena, in U.S. District Court in the Eastern District of Virginia, demands that she turn over all financial information about the site, and well as “any and all documents . . . concerning communication” with more than 50 Web sites, scientific journals or medical boards, just about anybody in the U.S. government, and “any religious group (Muslim or otherwise).”

I left three phone messages over the past three business days with the filing attorney, Clifford Shoemaker of Vienna, Va., but had not received a response by press time.

For her part, Seidel isn’t sitting still. Using knowledge she gained from an “introduction to paralegal studies” class at a technical college, she has filed a motion to quash the subpoena. It argues, in part, that the subpoena’s purpose “is not to elicit information . . . but to aggressively communicate the suspicion that I am . . . a covert agent of the government, pharmaceutical industry or some other hidden force.”

A judge should rule in a week or two. (This motion was spotted by Telegraph court reporter Andrew Wolfe.)

Seidel has garnered vast support online, for whatever that’s worth. As the issue ricocheted around blog-o-land, more than 100 folks have commented in alarm over the prospect of legal costs descending in the wake of critical online discussions.

“The thought that somebody can crank out (subpoenas) to anybody who happens to embarrass them publicly on a blog – that’s a huge threat to freedom of speech,” said Seidel in a recent telephone interview.

As a traditional media guy, I don’t have a lot of time for most one-person blogs, which tend to circulate the same old stuff.

But Seidel’s Neurodiversity.com is a different matter.

Perhaps because of her training (she has a master’s degree in library science), Seidel has collected and organized an impressive collection of information, not through clicking on some Google links but by filing a Freedom of Information request, making calls and using Lexus-Nexus at the Keene State College library.

Neurodiversity.com is so comprehensive that, combined with her well-written posts, it has moved beyond amateur status to become an example of quality advocacy journalism.

Quality, however, is a two-edged sword; there’s a reason that newspapers keep attorneys on retainer and most blogs don’t.Adding to the legal heat is Neurodiversity’s core message: Seidel’s belief that there is no good evidence showing autism is caused by mercury or any other contaminant in vaccines.

I share that belief, although I know far less about the topic than she does.

A possible link between autism rates and the MMR (measles-mumps-rubella) vaccine was a reasonable hypothesis at one point, but several epidemiological studies have demolished it. Notably, autism rates continued to rise even after a mercury-containing preservative was removed from the vaccine.

“I strongly believe that even though there may very well be parents whose children had some vaccine reaction, they are far outnumbered by parents who have been retrospectively convinced that their kids are autistic because of some iatrogenitc, actional vaccine,” said Seidel.

(“Iatrogenic” means a disease caused by a doctor; “actional” means you can sue over it. Seidel has studied this issue long enough that jargon has entered her vocabulary.)

The 52-year-old Seidel has two teenage children, one with a diagnosis of Asperger’s syndrome, at the milder end of the spectrum for autism disorders.

She got involved in online analysis of autism partly as a result of parental outrage, from hearing it described as “mad child disease,” so she understands parents’ desire to find someone to blame for autism in their kids. But she believes this wish is being manipulated by a loose coalition of people who benefit financially from legal action against big pharmacy firms.

Seidel said the subpoena arrived at her home the same day that she posted a long, very detailed article on her blog titled “The Commerce in Causation,” which documented 22 vaccine-autism cases over the past two years in which she claims Shoemaker was an attorney, resulted in $584,000 in legal fees.

Seidel said her crusade isn’t just a desire for fair play.

There are other issues, she said. She says this ardent belief in blaming autism on vaccines results in bad medicine as well as in legitimate therapies or research being thwarted and in unproven medication being given to children as part of fringe studies.

“It’s not good for parents’ mental health, it’s not good for the state of autism science, and it’s not good for autistic people,” she said.

She also noted a peripheral problem: “There’s a very disturbing trend of parents eschewing vaccines (for their children) because they hear all of this business. I’m concerned about the possible resurgence of epidemics as a result.”

Seidel is waiting to see what the federal judge will do but she knows that the autism-vaccine debate, with its potent mix of money, lawsuits, medical uncertainty and parental concern, will not go away any time soon.

“Believe me, (autism) is a huckster’s paradise. Everybody and their brother has their way of curing autism. Has it ever happened, have you seen it in the peer-reviewed literature? No,” she said.

Science from the Sidelines appears Wednesdays in The Telegraph. David Brooks can be reached at 594-5831 or dbrooks@nashuatelegraph.com.

Source: http://www.nashuatelegraph.com/apps/pbcs.dll/article?AID=/20080409/COLUMNISTS03/933585002

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