An Exchange of Views · 2006-03-26 15:30

Last Sunday afternoon, I received an unexpected telephone call from Richard Deth, Professor of Pharmacology at Northeastern University. In a letter to the Metro West Daily News, published the day before, I had suggested that his service as an expert witness for plaintiffs in the Omnibus Autism Proceeding was a relevant potential source of bias that should have been referenced in Jon Brodkin’s article, Study Links Autism, Vaccine. What follows is our subsequent exchange of correspondence.

March 19, 2006

Kathleen,

For our phone conversation and the tone of your letter to MetroWest, I gather that you have strong opinions about the cause(s) of autism. With a son or daughter who is autistic, you certainly have every right to any opinion that fits with your personal experience. As a neuroscience researcher, I have to follow the molecular evidence that comes from my own lab and the labs of others. It is that approach and no other that has guided my evolving understanding of autism.

From the general appearance of your website I gather that you are an advocate of the diversity of the human mind, a perspective we both share. Indeed my research has largely revolved around a neurotransmitter receptor, the D4 dopamine receptor, that exhibits an exceptional degree of genetic diversity and has been linked to a range of personality traits and disorders, including ADHD. I can appreciate how mother nature encourages diversity in human outlook and abilities. However, overlaid on this natural diversity are the effects of neurotoxic environments that can limit the potential of any individual. However, certain individuals are more sensitive to particular environmental factors than others. It turns out that analysis of metabolites in the blood of autistic children shows that they have problems in their sulfur metabolism pathways. These pathways are important in providing resistance to oxidative stress insults, including heavy metals. Indeed, the ability to eliminate heavy metals is provided by these pathways, and autistic children typically have an impaired ability to excrete metals.

In light of these findings, one could say that heavy metal exposure has revealed a vulnerability that otherwise would not have been a severe problem for many autistic kids.

I don’t know if you are at all open to understanding the scientific information that indicates a link between mercury exposure and autism. If you are, it would my personal pleasure to drive up to Peterborough and fill you in. Since this information has led to treatments that help many autistic kids, there is the outside chance that your son or daughter could benefit from this information.

In the meantime, I would ask that you refrain from characterizing me as someone whose opinions are a reflection of income from autism-related lawsuits. As I indicated by phone, I have never testified one way or the other and have never received any payment. I did meet several times with one lawyer and was willing to testify, but only with the provision that any payments would be made to Northeastern University with the restriction that they be used for further autism research. My wife and I discussed this issue at length and we decided that while it was important that scientific information be made available in legal cases, it should not be the basis for personal profit. I expect to maintain this approach in the future.

In closing, I reiterate my sincere offer to be helpful to you and your family. I have been blessed to be doing research that matters to real people, and that is what matters to me.

With best regards,
Richard Deth

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March 21, 2006

Dear Professor Deth,

Thank you for writing. You are correct — I do have some strong opinions, and I generally don’t hesitate to express them. However, I could not possibly do so adequately in response to an unexpected phone call to my home.

My opinions are partly based on personal experience, partly on my consultation with various medical professionals and academics specializing in autism, and partly on my consideration of massive amounts of information about autism. A lot of that information has to do with vaccines, and includes many of the articles that you are likely to recommend.

I have read the original Mercury Parents’ comparison of autism to mercury toxicity, and I have also read Karin Nelson and Margaret Bauman’s rebuttal of it.

I have read the Amy Holmes et al baby haircut study, and all of the Autism-Mercury newsgroup posts discussing recruitment and design of the study. I have also read various analyses of it.
A Perfect Example of How Not to Do a Study, Part I, Part II
Undead Bad Science
Dr. Amy Holmes Was Just Trying to Help

I have read Jill James’ work on glutathione, as well as further commentary on the subject.
Glutathione: What Is It and Why Should We Care?

I have read Mady Hornig’s mouse study, and a number of discussions of it.
Rain Mouse
Dr. Hornig’s Autistic Mice
Nightmare at Columbia U: Return of Rain Mouse
(The last essay addresses serious ethical concerns regarding Professor Hornig’s use of a strain of mice likely to engage in aggressive and self-injurious behavior whether overdosed with thimerosal or not.)

I have read your paper with Waly et al, the Burbacher study, and analyses of these.
Bartholomew Cubbins on Autism: Waly et al, Mol Psych 2004
Bartholomew Cubbins on Autism: Burbacher et al, EHP 2005

I have read many of the Geiers’ papers, and I have also read criticisms of them:
Thimerosal-Containing Vaccines and Autistic Spectrum Disorder (and addendum)
Study Fails to Show a Connection Between Thimerosal and Autism
Armchair Science vs. Real Science
Below Junk Science
Autism Mercury News
Why Not Just Castrate Them?
The Geiers Go Dumpster-Diving
Math Slop: Autism and Mercury
Statistical Commentary on the Geiers’ Latest Paper, Part I, Part II, Part III, Part IV
How to Win With Excel and Influence People

I have read various epidemiological studies and the IOM report; fMRI studies and studies discussing the prenatal roots of atypical neurological development; papers in genetics, evolutionary and cognitive psychology. I have read many testimonials of “cure” and “recovery,” including the Autism Research Institute’s “Recovered Kids” video.

I am more than willing to consider the possibility that an adverse vaccine reaction could precipitate health problems that would result in a child’s autism becoming evident sooner than if the child had not been so affected. That’s why I support continued research on metabolic peculiarities in autistic people, and on genetic markers for environmental sensitivity. However, in my opinion, it makes as little sense to assert that convincing evidence exists to support the hypothesis that autism per se is a common consequence of vaccination, as it would to assert that a dozen unsewn quilt squares will keep you warm at night.

The ongoing autism-vaccine litigation and plaintiffs’ desire to establish “general causation” has resulted in the widespread dissemination of premature conclusions and unproven generalizations about autism, inappropriate concentration of popular attention on a single aspect of autism-related research, and the exaggeration of the extent to which existing scientific evidence supports the autism-poisoning hypothesis. This problem was acknowledged several months ago by six researchers who wrote to the New York Times, protesting references to their work in a full-page advertisement placed by a parent organization that asserts that all autism is a consequence of mercury toxicity.

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… [The] 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.

The media circus surrounding vaccine litigation and peer-reinforcement from mercury-focused online groups have resulted in many parents being driven into a vituperative frenzy at the thought that their children have been recklessly (or even deliberately) damaged, whether they observed specific adverse reactions to immunization or not. This is counterproductive to adjustment, coping and emotional healing, and is injurious to everyone in the family.

Many of the studies, articles and public statements by those promoting a causal association between vaccines and autism appear to have serious methodological problems. These include selection bias; miniscule sample size; reliance on chelation-provoked testing; the use of a nonstandard, private mail-order laboratory that is economically dependent upon consumers and suppliers of chelation therapy; and unsubstantiated attributions of intention.

Such attributions include your statement to Jon Brodkin that the CDC’s decision to phase out the use of thimerosal was “an implicit acknowledgement that it could have contributed to the rise in autism cases” — an assumption that disregards the need to address risk perception in immunization program development, especially if the perception of risk arises from fear rather than from a dispassionate assessment of scientific evidence. Another, more inflammatory example can be found in the following post made to the Autism-Mercury list by Teresa Binstock, co-author of Autism, A Novel Form of Mercury Poisoning.

If either of those [flu vaccine] doses includes thimerosal and especially if both doses include thimerosal, the subsequent and long-term profits from drugs like Ritalin, Risperdal, etc, will be substantially enhanced. The article reveals the CDC’s Julie Gerberding in her role as advocate for pharmco profits stemming from iatrogenic neurologic injuries caused by thimerosal injections.

You claimed in a letter to the Boston Globe that chelation, glutathione and methyl B12 supplementation “bring about clinical improvement in a large proportion of children with autism.” However, I know of no IRB-supervised double-blind, randomized clinical trials with informed consent that control for placebo effect, pinpoint the nature of the improvement being observed, and confirm claims of widespread efficacy for any of these treatments. I am aware that a study of chelation is currently being conducted by engineer James Adams at the Southwest College of Naturopathic Medicine, but am not a bit confident that it is scientifically rigorous or free of bias. One mother who was considering enrolling her child in the study reported that a nurse involved in the study suggested that she buy the current issue of Mothering Magazine in order to read about “recovered autistic children.” The article to which the nurse referred is entitled, The Promise of Chelation. It hardly seems appropriate for those conducting a scientific study of pharmacotherapy for children to refer parents to popular literature prematurely touting the efficacy of the therapy being tested, and to thereby predispose them to bias in their reporting of behavioral symptoms.

An Arizona father has also asked some very probing questions about the SCNM chelation study that have reinforced my doubts:
More Research, More Questions: A Chelation Study in Arizona
Arizona Chelation Study – Is It Real Science?
Earthquake! Shaky Science In Arizona
AZ DES/DDD Responds Following Promotion of SCNM Chelation ‘Research’
What Say You, Mr. Looker-Outter for the Kids?
ASU Got It Right — Out the Door!

I am also unaware of studies that support general statements such as you made that “autistic children typically have an impaired ability to excrete metals.” Holmes et al drew this conclusion in the baby haircut study to explain relatively low mercury levels in autistic subjects. Other scientists reviewing this study have determined that the hair mercury levels in the control samples were inordinately and atypically high, indicating possible procedural flaws.

In a case-control study, the mean hair mercury level was significantly lower in a group of 94 children with autism (0.47 parts per million or ppm) than in a group of 45 matched controls (3.6 ppm), leading the authors to speculate that enhanced mercury retention plays a role in the etiology of autism (Holmes, Blaxill, and Haley, 2003). The mean hair mercury level in the control children was much higher than would be expected, however, as the geometric mean in 1-5 year old U.S. children is 0.12 ppm (McDowell et al., 2004). This suggests that the control samples in this study might have been contaminated.

I am particularly concerned about the extent to which parents are being encouraged to subject their children to potentially dangerous pharmacotherapy based on extremely dodgy premises, with little apparent care taken to develop rigorous study design or involve researchers not already wedded to the idea that autism is a consequence of mercury toxicity. For instance, my concerns about the “Lupron Protocol” being developed by Dr. Mark Geier are described in great detail in Autism and Lupron: Playing With Fire. Lupron is a unique and powerful chemical; it has legitimate, well-defined uses, and can have potentially serious side effects. Its FDA approved for pediatric use is limited to the treatment of central precocious puberty. To my knowledge, its legitimate uses do not include reducing the side effects or improving the efficacy of chelation, or “reducing the toxicity of mercury.” I have closely read the Geiers’ article on this subject, and their suggestion that testosterone reduction might be useful for this purpose is based on little but speculation. In order to test those speculations, Dr. Geier and cooperating DAN! doctors have proceeded to deliberately suppress developing children’s hormone production. My searches at http://www.clinicaltrials.gov found no indication that this research project has been submitted to oversight by an Institutional Review Board. On the Powerpoint presentations available at Autism One, Dr. Geier and two patients’ mothers describe a diagnostic process for CPP that skips over essential diagnostic tests. The presentations indicate that the diagnosis was given based on 1) high serum testosterone levels in both boys; 2) excess body hair in both boys; 3) premature physical development in the six-year old; 4) supposedly “premature sexual behavior” in the nine-year old. Lupron manufacturer TAP’s website indicates that a baseline evaluation for central precocious puberty should include adrenal steroid level to exclude congenital adrenal hyperplasia; beta human chorionic gonadotropin level to rule out a chorionic gonadotropin secreting tumor; pelvic/adrenal/testicular ultrasound to rule out a steroid secreting tumor; computerized tomography of the head to rule out intracranial tumor, in addition to measurement of sex steroid levels. However, there is no indication in the Powerpoint presentations that any tests besides serum testosterone were conducted, and there is no indication that any pediatric endocrinologists were consulted. A newsgroup post about a recent talk given by Dr. Geier indicates that he is currently doing “trials” of Lupron on 13 and 14 year olds. You don’t need to be a research scientist to recognize that that’s exactly the age when you don’t want to block the steroid sex hormones, and that this kind of exploration of the effects of Lupron on children of this age goes beyond “off-label use” into the realm of human experimentation.

Lupron is not the only risky treatment being touted for autistic children. For instance, children are being administered intravenous immune globulin on the premise that autism is a vaccine-induced disorder of immune function. The risk posed by this procedure was illustrated in a February post made by a California mother to a private mailing list. The family had flown to Florida so that their three-year-old autistic son could be administered IVIG at the office of a DAN! doctor; Florida Medical Board records indicate that the doctor’s training is in psychiatry, not immunology, and that he does not have staff privileges at any local hospital. According to his mother, twenty-four hours after the infusion, the boy “held his head, began to scream, vomited and collapsed on the hotel room floor… He was unconscious, listless and barely breathing.” He was taken by ambulance to Miami Children’s Hospital, where he spent several days, his condition eventually identified as aseptic meningitis. While aseptic meningitis is sometimes described as a rare reaction to IVIG, individuals with a history of migraine are at particular risk for such a reaction. It is quite possible that a three-year-old autistic child might have a genetic predisposition to migraine that had not yet manifested, or might have expressed the pain from a previous migraine in an atypical or indirect manner, hence allowing it to go undetected.

Invasive, intravenous chelation continues to endanger children subjected to it by doctors who do not fully understand the possible side effects of various chelation agents. Although you are probably aware of the recent article in Morbidity and Mortality Weekly Report, warning about the dangers of using Na2EDTA, you may not be aware that that article helped to save a child’s life shortly after its publication. Just two weeks ago, a member of the Evidence of Harm list announced that,

just today the MMWR report was used to help a family avoid a potential catastrophe in a case where an ignorant physician was going to use Na2EDTA on a heavy metal toxic child.

Although one would like to assume that all doctors who recommend such treatments really know what the potential side effects might be, it seems that there are some who do not. Autism Research Institute’s list of DAN! doctors indicates that,

We do not at present have any means of certifying the competence nor quality of practice of any practitioner.

Promoters of biomedical treatments for autism often infuse their descriptions with a sense of urgency, shamelessly manipulate parents’ emotions and inappropriately appeal to parents’ religiosity. Consider the following guilt-trip inflicted upon a member of the Autism-Mercury newsgroup by chelation doctor Mark Sircus, director of the International Medical Veritas Association.

Personally I think you should be looking deeper into why your child is progressing slowly… if you yourself are being an obstacle to his progress then the hate you sometimes put out to others will someday visit you in a way you might not be able to stand. Thats not me being aggressive Steve its a possible call for some deep change for the sake of your child who you are desperately wanting to recover into the full light of day. As you know more clearly than anyone, after waiting a year to start chelation, TIME IS OF THE ESSENCE, and if your kid could make incredible progress in the next three months and does not because you have your head and heart stuck then its on your soul.

Consider also Boyd Haley’s perfunctory dismissal of the potential of unchelated ASD adolescents and adults.

’[Chelation] doesn`t seem to work with the older kids,’ Haley said. ‘These older kids are just lost.’

Newsgroup posts allege that a prominent DAN! doctor has been known to augment biomedical treatments with exhortations to parents to have their children exorcised.

If you’d like to check out list archives from 1998 and 1999, i bet you will find the discussions of his exorcism referrals (i kid you not), his charging $275-300 for a $5 vial of secrepan and telling parents it was still the Ferring (i lived through that one personnally and only found out the truth when i went through my son’s medical file when he stepped out of the room). or when he pulled blood from my kid without my knowledge or permission and sent it off to a lab — i found out when i got the lab bill which then he told us we HAD to do IVIG on my son ASAP given his test results — thankfully I knew someone who actually knew something about immunology (another DAN doc) who told me given those very test results it would have killed my kid. This is just part of my experience with him.
I can think of a dozen people he told to have thier kid exorcised. The first few who told me I thought was funny, then I heard it from other listmates on this list, then I heard it on audiotape for myself. He was actually banned from participating in a DAN conference one year for this.
Actually I heard that from him myself. He is a true believer in the devil and exorcism.

Experimental treatments also pose extreme risks to parents’ finances. Parents are liquidating retirement savings accounts and driving themselves close to bankruptcy paying out of pocket for treatments intended to relieve “heavy metal toxicity” in their children. Exorbitant costs for intial office visits are common. For instance, here is the tale of one family’s November 2004 visit to a DAN! doctor.

I’d like to post on our experiences today (the good, the bad, and the ugly)... trying to get over the sticker shock of our initial visit ($3500). We ended up having to “pick and choose” tests because our budget simply does not allow that kind of expenditure right now and frankly, I don’t think we need to have our son’s “chi” tested at this juncture… (ahem…) ... [The doctor] told me about the tests that he wanted to order for our son and about why it was good for me to buy $100 worth of videos about the downside of vaccines. I chose not to purchase these. He wanted us to try 8 sessions of Sensory Removal — a Chinese medicine practice involving acupressure and taping the fingers together holding a steel rod… (AHEM!) However, we did get some mainstream tests done and expect the results in a few weeks — hair, thyroid, etc. but no OATS. We’ll do this one on our own. He is going to wait to prescribe supplements until he gets the test results. We left the office with a bottle of MB-12, 14 syringes, and an uneasy feeling…

Lawyers have been known to encourage parents to pay for medically-unnecessary chelation-provoked tests — which by definition produce artificially elevated mercury readings — in order to accumulate evidence for use in court.

I’ve been talking to several lawyers and get the feeling in the end that they’re all going to want clients who are doing chelation with lots of tests to show what’s coming out. The lawyer I talked to today said I should test after every single round. We haven’t even tested once because Dr. Holmes hasn’t told us to and I feel like I’ve already blown it because we didn’t test in the beginning when it shows a lot of mercury coming out with DMSA only. We can barely afford to buy everything that goes along with chelation and certainly couldn’t afford that much testing anyway. I faxed Dr. Holmes and told her to set us up on a schedule that would help our case and she said, “Be very careful on this endeavor. The real key to “proving” mercury toxicity where it will standup in court is showing enough abnormalities that only mercury can cause, not how much mercury is actually coming out, especially now that we are on to brain mercury. This does not ever come out in huge loads.” I totally agree with her but the lawyers I’ve talked to say I won’t have a chance without testing. I wanted to let everyone know so especially the parents who are just starting chelation, make sure you get plenty of testing done if you plan on pursuing a law suit.

The campaign to persuade the general public that there is an “epidemic” of autism resulting from thimerosal toxicity has resulted in its participants’ denial of the possibility that there exist an appreciable number of adults whose early developmental pattern and cognitive characteristics are similar to those of children now being diagnosed with ASD. Although the revelation of a child’s ASD may have come as a bolt out of the blue to parents with whom you are acquainted, other families eventually recognize after the diagnosis that we are raising children not a whole lot different from ourselves or our relatives. Although you have stated that nothing but molecular evidence has guided your evolving understanding of autism, your comments to Jon Brodkin about autism prevalence were not based upon molecular evidence. A remark like, “This so-called hidden horde, where are they?” is not a scientific way of discussing the incidence of autistic spectrum conditions in adults, and incorrectly implies that individuals with ASD will necessarily display the same level of impairment in adulthood that they might have experienced in their youth. In fact, your “hidden horde” comment inspired me to write an essay, Reflections on the Hidden Horde, about the history of that horrible meme and the challenges inherent in studying a stigmatized yet emergent population that is partially hidden by choice, many of whose members are under no moral or legal obligation to submit to census or public scrutiny. I encourage you to consider the possibility that there are far more autistic-spectrum adults out there than you have previously imagined, especially if your exposure to autism is largely focused on young children who are not only autistic but are also experiencing significant physical problems, whose parents attribute their children’s autism to mercury poisoning and finance research they hope will support their preexisting conclusions.

I experience challenges faced by many other parents who deal with difference and disability in the family. Nonetheless, I decry the possibility that the presentation of biased and distorted scientific evidence in vaccine litigation might enable anyone to be held liable for an individual child’s disability in the absence of proof that harm was ever inflicted to that child. Such a scenario runs counter to my fundamental sense of fairness and justice.

I respect your desire to be of help to others, and to not be characterized as a mercenary. I also respect your consideration of the ethical ramifications of an academic’s provision of expert testimony in personal injury lawsuits. I based my reference to you as an expert witness on the Petitioners Initial Disclosure of Experts filed with the Office of the Special Master on February 14, 2006, and included a link to that document with my letter to the Metro West Daily News.

I hope that this letter has helped you to understand my concerns about the negative impact upon autistic people and their families of the promulgation of the idea that most cases of autism are a consequence of toxicity, and about the negative influence of litigation upon scientific research and the manner in which scientific information about autism is presented to the general public.

Sincerely,

Kathleen Seidel
neurodiversity.com | honoring the variety of human wiring

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March 22, 2006

Kathleen

Thanks for the very comprehensive reply email. I can see that you are dedicated to working through this controversial issue and that you have a wealth of personal experiences. Moreover, you have many more years of experience in the world of autism than I. (I’ve only been involved for 3-4 years or so.)

As to the reason that our paths crossed, I thank you for alerting me to the fact that my name was included on that expert witness list. It was done so without my knowledge or permission. It might be related to a phone call from that law office that was logged to my office while I was away on vacation in February. I never returned the call.

That said, your decision to publicly accuse me of profiteering from autism is still very wrong. Your statement was not only false and damaging to my professional reputation, but it betrays a willingness to create a conclusion in the absence of fact to bolster your personal point of view and a further willingness to promulgate this fabrication to the public at large in an effort to convince them that mercury does not contribute to causing autism. You owe me an apology, and more.

As for the other comments you made in your email, I can agree with some of them, but I strongly disagree with others.

The work of Dr. Jill James is remarkably clear and significant, in my opinion, and the blog that you reference as a rebuttal is certainly a weak attempt to ignore important information that points toward a reasonable molecular mechanism. It’s as if some people would prefer to not know a cause for autism if it happens to involve mercury or the biochemical systems that are most sensitive to mercury. Go figure.

I can’t briefly summarize all the results that we have obtained in the last year or two since we published our thimerosal study, but to me it is convincing that mercury has played an important role. Dr. James’s anticipated genetic studies will show the risk factors that distinguish many children with autism. These include factors that affect methylation and oxidative stress.

As far as controlled clinical trials, the MIND Institute at UC Davis is conducting a trial of methylB12 that I hope will yield results within the next six months. MethylB12 effectiveness in ADHD is being examined in a clinical trial at UCLA. We are both aware that the preliminary evidence for methylB12, folinic acid, N-acetylcysteine etc originated with the DAN organization, which is composed largely of primary care physicians who are not academic researchers. Therefore it is logical under these circumstances that organized clinical trials would start after the anecdotal reports of their effectiveness.

I’ve been working closely with the DAN group for the past three years, and their leadership group has a high level of honesty and are motivated to do good. Some are admittedly better than others, which is true of all organizations. There are charlatans within the broader field of biomedical testing and treatments, which is unfortunate. Sounds like you’ve encountered some. I’m shocked by some of the things you’ve said about Boyd Haley, but I suppose they have a foundation. He is certainly not measured in his choice of works and he seems to enjoy being controversial and irritating. I have gone on record as disapproving of the use of Lupron for anything other than a documented endocrine disorder such as premature puberty. It is not the testosterone that is the root of the problem.

It wouldn’t be profitable for either of us to try and convert the other to our point of view. However, I would like to make a virtual wager that within the next 18-24 months scientific evidence will make the thimerosal-autism link a near certainty. If you are willing, I’ll let you name the stakes.

Best regards,
Richard

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March 24, 2006

Dear Professor Deth,

Thank you for your reply. If you re-read my letter to the editor, you will see that I was protesting Jon Brodkin’s silence regarding dissenting parental perspectives and relevant potential sources of bias, and his failure to investigate the validity of the Geiers’ epidemiological claims, which you praised as “exactly the kind of thing people have been waiting for for three years now.” You have stated that I publicly accused you of “profiteering from autism,” but this is inaccurate. Rather, I asserted that you are an expert witness on behalf of plaintiffs in thimerosal litigation, and that you stand to benefit from your testimony. It was quite an oversight for the attorneys to fail to confirm your willingness to serve in that role prior to naming you as a plaintiffs’ expert in the Petitioners’ Initial Disclosure of Experts, and filing that document with the Court of Federal Claims. However, their certainty is understandable, given your indication during our brief telephone conversation that the lawyer with whom you discussed the matter was “Andy” Waters, lead attorney in the thimerosal cases. In my previous letter to you I acknowledged my respect for your willingness to consider the ethical implications of payment for expert witness services, and to develop a compensation plan that suits your conscience. The expression “stands to benefit” accurately describes both payment for services made directly to an individual, as well as payment made to an institution in support of that individual’s research. I apologize for the possibly erroneous implication — made without malicious or deceptive intent — that you have made a contingency arrangement, since you have indicated that your terms of service have not been finalized. I will write to ask the Metro West Daily News to publish a correction of the phrase “rulings in favor of plaintiffs” to “service to plaintiffs.”

You describe the results of Jill James’ “anticipated” genetic studies as if they are a foregone conclusion. This is reminiscent of David Geier’s Spring 2005 announcement to Robert F. Kennedy, Jr. of the results of his and Dr. Geier’s most recent report — an announcement made months before they even conducted the analysis of data upon which the study was based. The outcome of any endeavor funded by SafeMinds is not too difficult to predict, given that the organization limits its support to “research that provides credible findings to support that the mercury/autism hypothesis is true” — that is, research that will confirm its non-scientist founders’ preexisting attributions regarding their own children’s autism, and their subsequent generalizations about autism causation, generalizations being pressed in the Omnibus Autism Proceeding and in adversarial, class-action litigation. I would be interested to know whether you (or any other recipient of grants from SafeMinds, for that matter) would ever consider and publicly acknowledge the possibility the thimerosal might not trigger most instances of autism.

It is logical that organized clinical trials of various treatments would begin after accumulation of promising anecdotal reports. It is nonetheless surprising to me that a pharmacology professor would suggest that such evidence is equivalent to scientific proof of efficacy. Certain treatments are undoubtedly helpful to certain children; however, it’s one thing to state that a treatment “brought about reported improvement in specific domains of functioning in a certain percentage of a small sample of autistic children to whom it was administered in informal trials,” and quite another to state that the same treatment “brings about clinical improvement in a large proportion of children with autism.” Anyone marketing such treatments with such an unequivocal claim would be required to comply with FDA regulations on health-care advertising.

I provided a source for Boyd Haley’s “just lost” remark via a link to the UPI article in which it appeared, and also provided online sources for most of my other references to treatments and doctors. If you join the ABMD newsgroup, you will see that the doctor alleged to have recommended exorcism is as much of a leader in DAN! as anyone else; in fact, his name appears immediately above yours on the Petitioners Initial Disclosure of Experts.

I am heartened to learn that you disapprove of the use of Lupron for anything other than a documented endocrine disorder. Perhaps you might encourage Dr. Geier to hold his horses, conduct complete diagnostic imaging tests on his young experimental subjects, and consult with pediatric endocrinologists before offering those children such an uncommon diagnosis as precocious puberty, and such a powerful pharmaceutical product as Lupron. Perhaps you might ask him how he justifies administering a hormonal inhibitor to adolescents, or how he stands to benefit from his pending applications to patent the “Lupron Protocol” (20060058241 and 20060058271).

Sincerely,

Kathleen Seidel
neurodiversity.com | honoring the variety of human wiring

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Those patent applications will be the subject of my next weblog entry.

Comments


  1. So, it looks like Dr. Deth is in “good company”?

    Doc Geier and “Bradstreet of god” are paid professional witnesses along with Dr. Deth.

    But Dr. Deth makes it clear that he didn’t know he was on that list and even if he did talk to the lawyers about it he didn’t want the money to go directly to him but to his school? Surely with a note attached that it was because of Dr. Deth’s work that the school was getting the money…. one assumes.

    Thanks, Kathleen. Beautiful letters. Great research. I look forward to hearing what’s up with those patents? Did they invent something? I didn’t know you could patent a way of administering a drug, and for kids that don’t need it? Very weird.

    — Ms. Clark    2006-03-26 16:27    #

  2. “The work of Dr. Jill James is remarkably clear and significant, in my opinion, and the blog that you reference as a rebuttal is certainly a weak attempt to ignore important information that points toward a reasonable molecular mechanism.”

    Hey, what’s that supposed to mean? A weak attempt to ignore information? That’s the best he can come up with? Maybe I’ll make a weak attempt to ignore anything in his thimerosal paper that doesn’t correlate to what is known about autism. That would leave about three sentences, in my opinion.

    — notmercury    2006-03-26 17:52    #

  3. Great work as usual, Kathleen. I get the impression that alongside charlatans there are scientists who strive to maintain their professional ethics while working with the biomedical movement.

    Identifying those with whom dialogue is possible and following them up is as important as taking out the snake oil merchants.

    — Mike Stanton    2006-03-26 18:04    #

  4. Hi Kathleen
    Thank you very much for your effort, your commitment and your strong- even polite- presentation of facts. I have always had the same impression than Mike, that alongside not so serious people there are true scientists working with the biomedical movement. I do think that Dr Deth and Dr James are true scientists and they seemed me very honest.The point is to know who is who, especially being 10 000 km away USA. You are helping all of us to know and this is very important for me.
    Thank you again, from my heart.
    María Luján

    — María Luján Ferreira    2006-03-26 18:57    #

  5. Excellent work, as always, Kathleen.

    Call me a pessimist, but I’m skeptical of anyone who offers to test/prove/treat “for free.” (*cough* JB Handley, cough). Not only is it patronizing—it seems like evidence that someone is so convinced they’re position is correct that they don’t need to think critically anymore.

    — Tera    2006-03-26 19:25    #

  6. “I don’t know if you are at all open to understanding the scientific information that indicates a link between mercury exposure and autism. If you are, it would my personal pleasure to drive up to Peterborough and fill you in.”

    Why does this sound like a scary online dating service profile? Who in their right mind would write this to someone?

    Why does he have to drive? Why not just ride his Nimbus 2001 or use some floo powder?

    Is this the kind of behavior that the Northeastern University Board of Regents expect from their tenured professors?

    — Bartholomew Cubbins    2006-03-26 21:13    #

  7. I’m really starting to wonder about the lawyers who didn’t tell Deth that he was going to be on that list of expert witnesses. I’m wondering if we should contact them all and ask them if they know.

    Harland Austin is at Emory University and
    David Baskin gave this presentation at the IOM about thimerosal
    “Presentation: David S. Baskin: Immunization Safety Review: Thimerosal

    Neuropathological, Neuropathological, Neurochemical, Neurochemical, and Clinical Considerations and Clinical Considerations”

    That’s palilalia isn’t it? Geier can cure that with Lupron Depot injections and a good chelator.

    Dr. Gershwin is at SURPRISE!

    UCD

    Philippe Grandjean is from Denmark, I think (gasp) and he’s the big mercury health guy in the world. I wonder what he thinks about TD DMPS and Na2EDTA chelation. His name is on the Faroe Island paper which seems to say that huge doses of mercury from diet sources doesn’t do that much harm (though huge doses are not good) I wonder if he can explain the tesosterone sheets thing to Geier?

    But first someone needs to ask them if they know they are on that list. Then ask them if they know about who else is on the list….

    — Ms. Clark    2006-03-26 21:54    #

  8. Jim Adams of ASU/SCNM did a similar thing.

    “I have already tried twice to answer your questions. I will try again below, and I am willing to meet with you to discuss your concerns if you have further questions.”

    If by “twice” he meant “once”, then I understood his use of the word “twice”.

    At any rate, I thought it kind of weird. It’s as if many of these so-called ‘scientists’ are more confident with their “in-person” charm to persuade, rather than scientific evidence.

    Hi Kathleen – Thanks for sharing.

    — Dad Of Cameron    2006-03-26 23:59    #

  9. BC nails it. This is a little more genteel than when Tim Ziegeweid and friends did their little exercise in stalking on me, but even creepier, coming from a supposedly dispassionate academic.

    Why do I get the feeling Dr. Deth doesn’t include epidemiology in the “scientific evidence” he wants to bet on?

    If he calls again, ask him how this mutation business creates savant skills.

    — Lisa Randall    2006-03-27 00:51    #

  10. Kathleen,

    Have you ever submitted the information you’ve gathered on the Geiers’ Lupron protocol to the Office for Human Research Protections? Seems like 14 yr olds being treated for premature puberty might raise some concerns.

    — Ruth    2006-03-27 17:55    #

  11. Hi. I had a dream about an idea for sensetory hearing problems with autistic’s I wonder if an adapted molded hearing aid SHELL could be made to block out sound from the outside and be incorperated with an FM reciever in each ear so that parents or teachers could speak to them in a low slow voice and remove the terrible background noise they must hear. This item could also be used in noisy work situations and factories etc. Get the idea? Who could invent and test such an item? any ideas? [SORRY, I DON'T ALLOW FOLKS TO POST PERSONAL CONTACT INFO ON THIS BLOG] these would have to be custom made for each person. The sender could also wear one to monitor the volume of his or her voice. Special glass’s could also be tested for visual sensory ovewrload???

    — Keith    2006-05-29 23:34    #