Autism, Mercury & Misleading Citations · 2006-03-02 13:30

The following is a series of emails to the New York Times, and two brief replies.

To: Byron Calame, Public Editor
Sent: Wednesday, December 07, 2005
Subject: Autism, Mercury & Misleading Citations
Dear Mr. Calame,
Since its inception in the Spring of 2005, the nonprofit organization Generation Rescue has become well-known for its promulgation of the controversial hypothesis that “childhood neurological disorders such as autism, Asperger’s, ADHD/ADD, speech delay, sensory integration disorder, and many other developmental delays are all misdiagnoses for mercury poisoning” and that chelation — a medical procedure that removes minerals from the body — can reverse the symptoms of autism.
A full page advertisement published in the New York Times on June 7, 2005 included a side-by-side display of symptoms of autism and those of mercury poisoning, and the statements:
Mercury Poisoning and Autism
It isn’t a coincidence
The links between mercury exposure and our autism epidemic can no longer be ignored. Review the evidence for yourself in a new book, Evidence of Harm, by journalist David Kirby.
Thousands of children are reversing the symptoms of autism by having the mercury removed from their bodies through detoxification under the care of a properly-trained physician. To find out more about this recent, life-changing news, visit www.generationrescue.org. Generation Rescue was founded for parents by parents. We are dedicated to empowering parents with the truth to help their children heal.
This advertisement was part of a large-scale publicity effort by Generation Rescue, which ran a similar full-page ad in USA Today on May 25, 2005 shortly after an inaugural press conference. The organization’s founders are a wealthy couple, parents of a toddler diagnosed with autism eighteen months ago. Over the past eight months they have conducted television interviews and have been cited in articles published in newspapers around the country claiming that autism is preventable and reversible.
The assertion that autism is a consequence of mercury poisoning, and the use of chelation as a “cure for autism,” are subjects of significant controversy. You are no doubt familiar with this controversy, which was the subject of the New York Times’ articles, On Autism’s Cause, It’s Parents vs. Research, and Experts Reject Some Therapies. (I understand that the Times received a great deal of mail criticizing these articles, and questioning their authors’ journalistic integrity; you responded to those concerns in a letter dated July 21, 2005.) In spite of claims made by certain health-care practitioners and laypersons, no studies have been conducted proving that autism and mercury poisoning are one and the same, or that chelation can reverse any amount of damage that may have been inflicted by toxic metal exposure. Indeed, many medical professionals have publicly expressed their concern about the risks posed by this procedure. Tragically, in August 2005, a five-year old autistic boy died of a heart attack during the course of intravenous chelation. According to news reports, his mother had moved to the United States from England in the spring, after hearing reports about chelation and its promise as treatment for autism, equated with heavy metal toxicity by promoters of chelation.
On Monday, November 14, 2005, the Times published another full-page advertisement from Generation Rescue. The advertisement featured a photograph of a school-age boy. In the background, printed in light gray type, there appeared a list of nineteen articles and letters published in academic journals, with the authors’ names followed by the names of the institutions with which they are affiliated. The ad copy included the statements:
For those of you who have done groundbreaking research on the connection between mercury and autism, we thank you for doing it for the best reason of all: Baxter.
Thanks to all your hard work and research, we’re changing the way we see autism, ADHD, ADD, and other neurodevelopmental disorders. As the evidence connecting mercury poisoning and these disorders grows, there is new hope for both treatment and reversal. Thousands of children like Baxter have already been helped — millions more need our help and can benefit from your continued research. And for that, Baxter, his family, and thousands of parents and doctors offer our heartfelt thanks.
On November 25, 2005 (eleven days after the advertisement appeared in the Times), the following essay, entitled General Confusion and the NYT, was published on Autism Diva, a weblog devoted to discussion of autism, with particular emphasis on the controversy over autism and vaccines.
It seems that “Generation Rescue” had planned to put a full page ad in the New York Times on Friday, November 11th. This was announced beforehand in several places on the Internet. The ad ostensibly thanked the researchers who have contributed to the body of knowledge about the (supposed) connection between autism and mercury.
The ad featured a list of about 19 citations of articles published in various peer reviewed research journals and non-peer reviewed publications. This list of references in light-gray type functioned as a sort of wallpaper behind the photo of a boy who is claimed to have been cured of his autism, and a statement in large black type saying that it was thanks to the “groundbreaking” research done by these researchers that the boy is now cured — or something like that.
One of the papers listed was by Andrew Wakefield, who doesn’t seem to really work in the area of mercury and autism at all. Another, listed second from the top was a paper by Jyonouchi, et al called: Dysregulated Innate Immune Responses in Young Children with Autism Spectrum Disorders: Their Relationship to Gastrointestinal Symptoms and Dietary Intervention. Then there was the Dr. Mady Hornig “Rain Mouse” paper, and a few other favorites of the mercury parents. None of which actually show that mercury causes autism or that chelation can cure it.
That ad didn’t go into the paper on Friday the 11th as planned.
Instead it showed up in the paper on Monday the 14th minus one of the references. For the record, Autism Diva has a digital copy of the ad as it was originally supposed to go into the paper, because the Generation Rescue folks shared a copy of it on the Internet. Autism Diva bought a copy of the NYT on Monday the 14th of November and so has a paper copy of the ad as published (containing two typos, by the way).
The published version was missing the Jyonouchi et al., reference.
Word on the street is that someone told Dr. Harumi Jyonouchi and she asked the Generation Rescue folks to take that reference out of the list, as it didn’t support a connection between mercury and autism. Autism Diva doesn’t know if that is exactly why the Jyonouchi reference was removed or if that is why the publication of the ad was delayed.
But, apparently, Jyonouchi isn’t the only one who didn’t want to have his or her paper listed in the ad. The following is a letter to the editor of the NYT. Autism Diva doesn’t know if it was published or not, as she doesn’t have a subscription to the NYT. Autism Diva can’t confirm that the NYT ever got a copy of this letter, but she assumes that it was sent by Dr. Newschaffer and received by the NYT.
Dear Editor:
In a full-page advertisement in the November 14th New York Times, GenerationRescue thanks scientists for their “groundbreaking research on the connection between mercury and autism.” Unfortunately, this expression of gratitude also conveys misleading messages.
It implies that all of the research listed in the advertisement was focused on mercury and autism. While many of the listed studies did explicitly investigate a potential link between mercury and autism, our papers, which were also included, did not.
Perhaps more troubling is that the ad implies that those of us whose names and institutions are prominently displayed are convinced that there is a causal connection between mercury exposure and autism risk. However, we do not believe there is a proven connection between mercury and autism.
Autism is an extraordinarily complex condition likely arising from a number of distinct causal pathways each probably comprising multiple steps. We do support continued research of mercury exposure and neurodevelopment — particularly work focused on identifying those more highly susceptible to mercury. However, if mercury’s potential role in autism is overemphasized other promising lines of research may be jeopardized.
We are enormously thankful for the dedication and energy of the autism advocacy organizations that work tirelessly to increase autism awareness and to secure funding for much-needed research. However we believe GenerationRescue’s advertisement, at first appearance an innocuous gesture of appreciation, may actually mislead the public into thinking that the mercury-autism hypothesis has stronger support in the scientific literature than it actually does.
Craig J. Newschaffer, Ph.D.
Johns Hopkins Bloomberg School of Public Health
Martha R. Herbert, M.D., Ph.D.
Massachusetts General Hospital
Diana Vargas, M.D.
Johns Hopkins University School of Medicine
Carlos A. Pardo-Villamizar, M.D.
Johns Hopkins University School of Medicine
James G. Gurney, Ph.D.
University of Michigan Medical School
Andrew W. Zimmerman, M.D.
Kennedy Kreiger Institute
Interesting. Autism Diva agrees with the letter’s signatories that the “GenerationRescue’s advertisement, at first appearance an innocuous gesture of appreciation, may actually mislead the public into thinking that the mercury-autism hypothesis has stronger support in the scientific literature than it actually does.”
Autism Diva
Diva of record
It seemed quite significant to me that five authors of research cited in Generation Rescue’s advertisement would be so concerned about the association of their work with the hypothesis that autism is a consequence of mercury poisoning that they would jointly sign a letter to the editor of the Times clarifying their stance on the issue. It is now over three weeks since the advertisement appeared, yet to my knowledge, the researchers’ letter has not been published in the Times.
My questions:
Did the editors of the Times ever receive the letter from Dr. Newschaffer, Dr. Herbert, Dr. Vargas, Dr. Pardo-Villamizar, Dr. Gurney, and Dr. Zimmerman?
If so, do the editors of the Times intend to publish it?
If not, why not?
Does the Standards Editor review health-related claims made by nonprofit organizations in the same way that he reviews health-related claims made by pharmaceutical companies or health-care professionals? Are disclaimers required for health-related claims made in nonprofit organizations’ advertisements?
Do the editors of the Times perceive any obligation to offer corrections or clarifications of potentially misleading medically-related information offered in advertisements, especially advertisements intended to persuade parents to subject their children to controversial and potentially dangerous medical treatments?
Publication of the researchers’ letter on Autism Diva means that many people with an interest in the subjects under discussion are now aware of its existence, of its authors’ desire that their positions be clarified in the New York Times, and of the fact that the Times has, for some reason, either delayed its publication, or chosen not to publish it at all.
The researchers’ letter addresses a significant public health issue of widespread current interest. In my opinion, both the Times’ readers and the researchers deserve clarification of the researchers’ position in the Times itself. The Times has a much larger readership than Autism Diva, and also has well established public credibility. The Times’ credibility is, after all, one of the main reasons that people advertise in it. The Times is where the misleading information was originally published, and at a respectable profit, too.
I look forward to hearing your perspective on this, and hope that the editors of the Times will publish the researchers’ letter.
Sincerely,
Kathleen Seidel

That day, I received first an automated reply, then a personal one:

Dear Ms. Seidel,
Thanks for writing. I will make sure that Mr. Calame sees your message.
Sincerely,
Joe Plambeck
Office of the Public Editor, The New York Times
Note: The public editor’s opinions are his own and do not represent those of The New York Times.

Twelve days later, I sent Mr. Calame a follow-up:

Dear Mr. Calame,
I sent you the following letter twelve days ago; it was acknowledged first automatically, then personally by Mr. Plambeck. I am writing to see whether I can expect to receive your specific response to the questions I’ve asked and the issues I’ve raised.
I notice that the researchers’ letter clarifying the relevance of their work to the autism=mercury poisoning hypothesis still has not been published in the Times, either on the Letters page, or as a correction.
I look forward to hearing from you.
Sincerely,
Kathleen Seidel

A week after that, on December 26, I received a reply from Mr. Calame:

Dear Ms. Seidel
I apologize for my delay in responding to your e-mail.
I’m sorry, but the questions you ask involve areas that fall outside the public editor’s mandate at The Times.
The public editor’s mandate does not include advertising accuracy issues. They are the responsibility of the advertising acceptability office, and I will forward a copy of your e-mail to that office.
The letters to the editor department is part of the editorial page. The public editor has no authority over the opinions expressed there. The selection of letters to be printed reflects their opinion. So I can’t help you with the letter to the editor.
Sincerely,
Byron Calame
Public Editor, The New York Times

Mr. Calame’s explanation seemed quite inconsistent with the publication, only eight days before the Generation Rescue advertisement appeared, of Cracks in the Wall Between Advertising and News. Addressing the ethical implications of advertisers’ attempts to borrow from the credibility of news columns, Calame wrote of “worrisome indications that advertisers are being allowed to tap into the credibility of the news columns in ways that slip over the line,” and provided the example of “watermark advertisements” in the Business section, in which “advertising images are printed faintly underneath a full page of stock-price quotations, with a conventional ad stripped across the bottom.” Calame also discussed the misleading presentation of bibliographic information by pharmaceutical advertisers given the paid opportunity to present links to a selection of New York Times articles deliberately chosen to cast their products in the most favorable light. It therefore seemed disingenuous of Mr. Calame to express reluctance to offer any opinion about the matter of the presentation of bibliographic information by an advertiser given a costly opportunity to present the titles of academic journal articles in a manner that inaccurately implies that those articles support the assertions made in the advertisement.

I was, however, grateful for Mr. Calame’s willingness to forward my letter to the advertising acceptability office.

I did not receive a response from that office. The last day of 2005, six and a half weeks after the advertisement’s publication, I wrote directly to Advertising Director Jyll Holzman, with copies to Byron Calame and to Craig Newschaffer at Johns Hopkins University, the lead signer on the researchers’ letter:

Dear Ms. Holzman and Colleagues,
Three and a half weeks ago, I sent a letter (copied below) to Byron Calame regarding the Times’ failure to publish a letter from six autism researchers whose names and/or publications were cited, without their knowledge or consent, in a full-page advertisement placed by the organization Generation Rescue, which was published in the New York Times on November 14. The Generation Rescue advertisement — suggesting that the researchers’ work supports the hypothesis that autism is a consequence of mercury poisoning — was part of an ongoing campaign to encourage parents to submit their autistic children to unproven biochemical treatments intended to relieve them of supposed “mercury toxicity,” which the organization equates with autism. One treatment aggressively promoted by the organization, chelation, was associated with the death of an autistic boy last August. The researchers specifically requested that their letter be published in full, so as to correct the misleading impressions given by the advertisement. In his December 26 response to my inquiry about the matter (copied below), Mr. Calame indicated that “The public editor’s mandate does not include advertising accuracy issues. They are the responsibility of the advertising acceptability office, and I will forward a copy of your e-mail to that office.” I am glad that Mr. Calame is willing to bring my inquiry to your attention; apparently, it did not occur to anyone in the editorial department to forward the researchers’ letter to you when they originally sent it, the same day the advertisement was published.
Although almost seven weeks have passed since the advertisement containing misleading health-related information appeared in the New York Times, I remain convinced that the researchers’ clarification of their position should be published by the Times, just as the Times publishes corrections regarding prices and availability of sale items mentioned in retail advertisements.
I look forward to your response.
Sincerely,
Kathleen Seidel

On January 5, after several frustrated attempts to email the above message, I wrote to Ms. Holzmann again, with cc’s to the Managing Editor, the Letters Editor, the Public Editor, and the President of the New York Times:

Subject: Misleading Claims in Health-Related Advertisement
Greetings,
The following letters pertain to the Times’ failure to publish a correction to pediatric health-related claims made in an advertisement prepared and paid for by the nonprofit organization Generation Rescue and placed in the New York Times on November 14, 2005. The correction was submitted as a Letter to the Editor by six autism researchers whose work was cited in a misleading manner in the advertisement. I understand that the researchers’ letter was sent the same day the advertisement was published. The Letters editor did not choose to publish the letter, and apparently did not forward it anyone else on the Times staff for consideration of the issues they raised. Having learned of the existence of the letter, and of the fact that it had never been published, I subsequently wrote to the Public Editor to ask him to address the matter. On December 26, 2005, I received a letter from the Public Editor stating that “advertising accuracy issues are the responsibility of the advertising acceptability office,” and promising to forward a copy of my e-mail to that office. I trust that he has done so, but am also writing again directly to follow up.
Starting on December 31, I have made four attempts to email Jyll Holman, Senior Vice President, Advertising, at advertising@nytimes.com, and each time have received the following error message: “Your message was not delivered[...].”
Would anyone who receives this message please read it in full, and address the questions I have raised, and please also forward it to Jyll Holman, Senior Vice President, Advertising, and any other Advertising staff member whose responsibility includes ensuring the accuracy of claims made in health- and medically-related advertisements.
Many thanks in advance for your assistance.
Sincerely,
Kathleen Seidel

It has now been almost four months since the researchers sent their letter to the New York Times; and two months since I sent my last letter. The researchers’ letter has never been published, and I have yet to receive a response to my questions beyond Mr. Calame’s statement that the matter did not fall within the scope of his responsibility.

I must conclude that the New York Times’ management places a higher priority on publishing a correction to the price of a pair of shoes sold in a department store, than on publishing a correction to misleading information provided in a full-page advertisement intended to influence decisions parents make about their children’s medical care — an advertisement that netted the Times approximately $120,000.

Comments


  1. Thank you, Kathleen. I appreciate all your efforts.

    It’s really amazing how unconcerned the NYT was over the damage that could be caused by the GR ad.

    The mercury parents whine about not having any money for research, but have $120,000 laying around to place a pathetic and misleading advertisement.

    $120,000 could do a lot of research, and could even build a home or create jobs for autistic people.

    — Ms Clark    2006-03-02 19:52    #

  2. Amazing patience and effort – bravo.

    Ms. Clark: you mean autistic children grow up? Who d’a thunk it?

    120k would cover the animal costs for 10-15 people doing active mouse work for a year (cage and vet fees).

    It would pay the salary of 3-4 postdoctoral researchers for a year.

    It could also provide certain lawyers a lot of heroin.

    And lastly, it could buy some venture capitalist a truck load of ego.

    — Bartholomew Cubbins    2006-03-02 21:16    #

  3. Amen to all that, Cubbins. It steams me to no end where some of this money goes. Thanks, Kathleen, for your most excellent work. I hope this is not the end; if I were one of the researchers I’d still want my name/association cleared. What GR did was crass.

    — HJ    2006-03-02 22:43    #

  4. Brilliantly dogged work Kathleen.

    I guess the silver lining is at least we now have definite confirmation that the NYT did indeed recieve the letter.

    — Kev    2006-03-03 08:24    #

  5. Thanks, y’all.

    I guess every brick wall needs a silver lining.

    — Kathleen Seidel    2006-03-03 08:37    #

  6. Unbelievable. With that kind of money, Mady could afford more rodent space. Burbacher could maintain a population of macaques long enough to measure mercury concentrations in the brain and other organs and look for microglial activation that didn’t appear in the original primates.

    I suspect that the GR folks think they have the answers and would prefer to fight a PR war over proving the science. Strike that, it’s clear that’s how they operate.

    — clone3g    2006-03-03 08:40    #

  7. Indeed! PR is the name of their game—PR in the hope of influencing the general public and potential jurors of “science” that fails to convince a great many scientists.

    And the PR game is a front for another game that’s playing out in the OAP. Didn’t Mark Blaxill say a couple of years ago that legal action puts the blame game before the scientific inquiry? Well, this PR campaign that exploits nonconsenting researchers by way of publicized “expressions of gratitude” nested inside misrepresentations of their work—it’s all a front for the “blame game” that picks up more and more speed as the “scientific inquiry” supporting litigants’ assertions falls further and further behind. And the “blame game” will continue to play out in civil actions, because you can bet that the VICP Special Master either will recognize the flimsiness of the evidence presented to support the assertion that autism per se should be defined as a vaccine injury, or won’t authorize sufficient compensation to enable plaintiffs to set up trust funds and cover the mounting expenses of unreimbursed treatments, and far-infrared saunas, and HBOT chambers for the playroom, and magnetic mattress pads, and any of the other exotic toys that autism profiteers persuade them to buy.

    Parents’ grief and fear are being exploited, and the New York Times advertising department is helping to enable that (along with a lot of gullible reporters who get a press packet from GR, NAA or A-CHAMP and think they’ve got the scoop of the century). It’s a damned shame, especially because the New York Times' Anahad O’Connor and Gardiner Harris are two of the very few journalists out there who have managed to pierce through the smokescreen and see the oily mess behind it all.

    — Kathleen Seidel    2006-03-03 09:21    #

  8. I checked my online subscription to the NYTimes and found that the Newschaffer was never published.

    — TheProbe    2006-03-03 17:06    #

  9. Every brick wall has a silver lining – Nice one!
    Thanks Kathleen for taking on the NYT. Don’t know why but increasingly media has a lot to answer for – e.g. Melanie Phillips

    — Alyric    2006-03-05 16:30    #

  10. Looks to me more like a stonewall than a brick one. :)

    Puns aside, though, it’s disturbing that they not only fail to investigate the accuracy of ads before publishing them, but refuse to correct or acknowledge inaccurate or misleading ads even after someone else goes to the trouble of pointing them out. Hardly what I’d call responsible journalism.

    — Chris    2006-03-09 14:55    #

  11. Kathleen. You are obviously an intelligent person but how can you be so stupid? What is your purpose in degrading a group of people who are trying to bring hope to those having been diagnosed with a disorder. Why are you joining forces with pharmaceutical companies who recklessly injected 237 mcg of mercury into the ‘90’s infants? So very many parents are struggling with children with behavior problems and being blamed for being bad parents when in fact their precious little baby was mercury poisoned and they don’t even know it. Oh-h-h-h. . .now I get it. You are a lobbiest for big pharma! That explains the intelligent writing combined with ignorant statements. Well, I certainly cannot compete with big pharma so, bye. Linda Soderberg

    — Linda Soderberg    2006-03-29 13:35    #

  12. In belated response to the vented spleen from Linda Soderberg:

    [1] Mercury hasn’t yet been shown to cause autism. Lots of heat and smoke (and mirrors – the Geiers come to mind) but no light. In fact, there is a mounting stack of data that refutes the “connection”. So, where’s the widom in chasing down a blind alley yelling and screaming and waving torches? Perhaps you should stop for a moment and see where you’re headed.

    [2] Strangely enough, the only groups I know that are blaming parents for their children’s autism are groups like “Generation Rescue”, who blame parents for not treating their kids with every crazy “therapy” that they dream up. Chelation, Vitamin A, Omega 3 fatty acids, supplements, minerals, Lupron, injectible gold, saunas, hyperbaric (barely) oxygen, anti-fungals, herbs, creams, riding horses, swimming with dolphins… the list goes on and on.

    [3] Rather than try to come up with a coherent explanation of why GR might misrepresent the work of so many scientists in the name of “helping the children”, you decided that it would be easier to apply the all-purpose smear-label of “Big Pharma”. This is no more intellectually mature than saying “Oh, yeah!” I interpret this as an indication that you have no data, no argument and no rationale for the bad behavior of the mercury-causes-autism movement.

    Prometheus

    — Prometheus    2006-04-30 15:09    #

  13. Or, perhaps, she, like so many GR folks, is caught up in making sure that she has someone to blame for her child’s “behavior problems” so that she can scream, “It’s not MY fault!” If you’re breeding for NTs and you get ASDs, then something’s gone horribly wrong, hasn’t it?

    And of course, in order to find someone to blame, you must first believe that something devastating has happened to your child, rather than viewing your child as an extraordinary, rare species, with gifts and intelligences all their own.

    You know what? If it’s ever proven (and it won’t be) that there is a link between the vaccines my autistic son had and his neurobiological differences, I will take full responsibility—insofar as what his differences will put him through in comparison to society’s expectations of normality.

    And Linda, just so you know, I’m not Big Pharma, or whoever you conspiracy theorists are villainizing this week because they disagree with your worldview. I’m a parent, with an NT son and an autistic son, who views them as equally lovable and valuable. Matter of fact, there are days where I’d choose my ASD kid over my NT kid, in terms of ease of parenting…

    — ilse    2006-05-05 11:41    #

  14. My oldest son wasn’t vaccinated and isn’t autistic. My youngest son was vaccinated in the 90s over my objections and has AS. He also has lead poisoning, which can cause autism. It is a fact that heavy metal poisoning can cause autism. [Whether the amounts in vaccines caused it remains to be seen.] However, we decided against chelation therapy for the lead poisoning because of the risks and side effects and because his doctor felt the lead level wasn’t high enough. Middle class parents are focussed on mercury, but they forget the millions of children still being poisoned by lead all over the world. Maybe poor children don’t matter.

    We will probably never know if lead poisoning caused or played a part in our child’s autism. My brother-in-law has AS and I may have it as well. Anyone born before 1975 was exposed to lead paint. I know that it isn’t our fault that our landlord broke the law and used lead paint. It isn’t our fault they put mercury in vaccines, and hey, they aren’t doing it anymore! We’ll see in the next ten years if it makes a difference. I know my youngest son is a wonderful, gentle person and I love and accept him just the way he is. It took a long time for me to get to a place of acceptance but that’s my problem, not his.

    I think the parents who expect a miracle are still in denial about their children’s disability. Remember, they may have autism, or autistic traits, as well and be in denial about that. They attack you because they want to believe in a fantasy and you keep giving them reality. They want the snake oil to work and get angry when you point out that it’s a scam. I think it was Robert Heinlein who said, “the sheep want to be sheared.”

    — Sappho    2006-07-20 01:03    #