Ken Stoller's Letter to Pediatrics on the Verstraeten Study

Thimerosal Mea Culpa from the CDC
Kenneth Stoller,Pediatrician
International Hyperbaric Medical Association

Letter sent to Pediatrics:

In 2003, Dr. Eric Coleman (LETTERS TO THE EDITOR: Ethylmercury in Vaccines
Pediatrics, Apr 2003; 111: 922 - 923.) was able to have a letter printed in Pediatrics, undoubtedly because of his affiliation with the FDA, defending the decision to pull the Hep B vaccine until a Thimerosal or ethylmercury free version became available. He said the AAP and USPHS should be commended for this proactive decision for "the fact is, no preclinical or clinical studies were ever conducted to specifically examine the safety of thimerosal (ethylmercury) at the doses found when used in multiple infant and childhood vaccines. Thus, there was no conclusive evidence because there were no studies."

The Coleman letter is of historical importance because of what what took place next.
What followed was insanity. The CDC forced flawed and perhaps fabricated ecological
studies down the throats of pediatricians and the AAP. Pediatrics published the
Verstarten and Madsen studies, to name two, despite glaring methodological errors.

The CDC then used this planted intelligence, if you will, to not only defend the continued presence of Thimerosal, but to obfuscate the rising numbers of children with neurobehavioral disorders, including Autism, and controlled the IOM in the process to make it all but impossible for any one in academic medicine to point out the obvious and still be taken seriously.

Valuable time was lost for affected children and families were destroyed in the ensuing years when legitimate interventions and research could have been taking place.

Thimerosal continues to this day to be given to 3rd world children with the blessing of the WHO and without protest from those that know better within the USA. Meanwhile
the CDC line was all the "new" cases of affected children were but do to better diagnosis.

After numerous unanswered Data Quality Act complaints filed with the the CDC, Director Dr. Julie Gerberding has

produced a report

delivered to the House Appropriations Committee, in which she admits to a startling string of errors in the design and methods used in the CDC's landmark 2003 study that found no link between mercury in vaccines and autism, ADHD, speech delay or tics.

A 2006 report from the National Institute of Environmental Health Sciences (NIEHS),
concluded that the CDC's infamous Verstarten Thimerosal safety study publish in this journal was riddled with "several areas of weaknesses" that combined to "reduce the usefulness" of the study.

"CDC concurs," Dr. Gerberding wrote in an undated confession (see above link) to Congress, (provided to journalist David Kirby through a Capital Hill staffer) adding that her agency "does not plan to use" the database in question, the Vaccine Safety Datalink, (VSD) for any future "ecological studies" of autism.

In fact, Gerberding's report said, any continued use of the VSD for similar ecological studies of vaccines and autism "would be uninformative and potentially misleading."

After Verstarten revealed the link between Thimerosal and neurobehvioral disorders in the report presented to the secret Simpsonwood meeting in June of 2000 (http://www.putchildrenfirst.org/media/2.9.pdf) CDC officials conducted at least five separate analyses of the data. The first analysis revealed at Simpsonwood showed that children exposed to the most Thimerosal by one month of age had extremely high relative risks for a number of outcomes, compared with children who got little or no mercury: The relative risk for ADHD was 8.29 times higher; for autism, it was 7.62 times higher; ADD, 6.38 times higher; tics, 5.65 times; and speech and language
delays were 2.09 more likely among kids who got the most mercury.

Verstarten, who did NOT disclose to this journal that he was now an employee of vaccine maker GlaxoSmithKline (not the CDC) diluted his data five times The relative risk for autism plummeted from 7.62 in the first analysis, to 2.48 in the second version, to 1.69 in the third round, to 1.52 in the fourth, and down to nothing at all in the fifth, final, and this was what was published in November of 2003 (Pediatrics 2003; 112:1039-1048).

The new and improved Verstarten VSD study was the main pillar of a hugely influential 2004 report by the Institute of Medicine, which was essentially ordered to conclude that there was no evidence of link between mercury, vaccines and autism.

The AAP published VSD study has long been held up as the best and brightest of all epidemiology studies(the others were in Sweden, the UK, and two in Denmark).

There is now not a single pediatrician in the USA who can not quote from at least the AAP (Verstarten) study.

In 2005, a group of Senators and Representatives headed by Sen. Joe Lieberman wrote to the NIEHS (an agency of the National Institutes of Health) saying that many parents no longer trusted the CDC to conduct independent minded studies of its own vaccine program. Lieberman et al asked NIEHS to review the CDC's work on the vaccine database and report back with critiques and suggestions.

The final NIEHS report detailed where the CDC went wrong in its design, conduct and analysis of the study. The NIEHS panel "identified several serious problems," with the CDC's effort, criticism to which the agency had not responded until Dr. Gerberding delived her undated report referenced above.

The NIEHS had criticized CDC for failing to account for other mercury exposures, including maternal sources from flu shots and immune globulin, as well as mercury in food and the environment.

"CDC acknowledges this concern and recognizes this limitation," the Gerberding reply
says.

The NIEHS also took CDC to task for eliminating 25% of the study population for a variety of reasons, even though this represented, "a susceptible population whose removal from the analysis might unintentionally reduce the ability to detect an effect of thimerosal." This strict entry criteria likely led to an under-ascertainment" of autism ases, the NIEHS reported.

"CDC concurs," Gerberding wrote, again noting that its study design was "not appropriate for studying this vaccine safety topic. The data are intended for administrative purposes and may not be predictive of the outcomes studied."

Another serious problem was that the HMOs changed the way they tracked and recorded autism diagnoses over time, including during the period when vaccine mercury levels were in decline. Such changes could "affect the observed rate of autism and could confound or distort trends in autism rates," the NIEHS warned.

"CDC concurs," Dr. Gerberding wrote again, "that conducting an ecologic analysis using VSD administrative data to address potential associations between thimerosal exposure and risk of ASD is not useful."

So, the Director of the CDC is now saying that its most powerful and convincing piece of exonerating evidence for Thimerosal is, in effect, "useless." This after years of
propagandizing the American public in violation of the law, after holding the illegal secret Simpsonwood meeting when all of this was revealed - including to a representative of the AAP!

Now we have a generation of pediatricians, who face perhaps the greatest iatrogenic accident in the history of pediatrics, who actually need to be deprogrammed to understand what the true nature of all the neuro-behvioral problems are that they confront without any understanding of etiology or potential interventions.

The most serious message that affected children have sacrificed themselves for still goes unheeded. The message is that the level of industrial pollution we are exposing ourselves to is so great now, that just a little more toxic load will push us over the edge.

It pushed a generation of children over the edge and so while we ponder who is going to pay for the many who will go on full disability, we should ponder the fate of our species as well.

(Special thanks to the journalist David Kirby.)

Julie Gerberding Tells Congress That The Verstraeten Study is Junk!

I am stunned.

I can't even think of a snarky comment to write.

My only question is, when is the press release from the CDC retracting Verstraeten coming out?

David Kirby "CDC: Vaccine Study Design "Uninformative and Potentially Misleading"

For those of you who may not understand the significance of this development, Julie Gerberding, the head of the CDC, has just taken down the tent pole arguement in the "vaccines don't cause autism" claim, on her own, with her bare hands.

UPDATE:

Pamella Addresses the AAP and All Star Pediatrics about the Gerberding report and their continued disrespect for parents.
The American Academy or Pediatrics in an Awkward Position after CDC Takes Thimerosal Safety Studies Off the Table

Verstraeten Conference Call? What Verstraeten Conference Call?

By now we are all familiar with the Verstraeten Study, the only government study into the safety of thimerosal containing vaccines. The study began in late 1999 and was supposed to be a simple study that looked at the amount of thimerosal a child got in their vaccines to see if it correlated to the onset of neurodevelopmental disorders like autism.

The four month study took four years to complete and cost the government in the ballpark of 25 million dollars. The sausage making that went into the creation of this monstrosity of a study became a main subject of David Kirby’s book, Evidence of Harm.

The reason it took so long and cost so much is that the simple version of the study found a significant correlation between thimerosal exposure and neurodevelopmental disorders, autism among them, so a lot of time and money had to go into figuring out a way to unfind the thing that no one wanted found in the first place.

Through FOIA requests, parents have been able to glean bits and pieces of what actually happened behind the scenes as Verstraeten’s creation grew from simple correlation study to the monster that was eventually published in 2004, but not much is known about his involvement in the project that bears his name after he left the CDC in June of 2000 to work for GlaxoSmithKlein, a manufacturer of thimerosal containing vaccines. The CDC has claimed that Verstraeten had no involvement in the study after leaving for GSK, for to do so would be a very serious conflict of interest.

Today we have yet more evidence that CDC has not been honest with us.

This week, in response to a FOIA request, an interested physician was sent these records. They are emails back and forth between Verstraeten and CDC employees in the summer of 2001, setting up a conference call on the thimerosal study, more than a year after he went to GSK.

The emails tell us nothing specific about the content of the discussion to take place, just that it was scheduled to take place on September 6th, 2001. The presumption is that the meeting took place, that Verstraeten was involved, and that the transcripts are out there somewhere.

It is my understanding that FOIA requests for these transcripts have already been filed. So stay tuned to see what they say.

That an employee of GSK was shaping a government safety study that could so profoundly impact its products and its bottom line is a serious breach. The Institute of Medicine relied heavily on the Verstraeten Study when it came to its 2004 opinion that thimerosal had no relationship to the development of autism and recommended that no further inquiry into the vaccine/autism be made. In turn, Julie Gerberding, head of the CDC, is currently proffering that now clearly erroneous 2004 opinion as evidence that there is no link between vaccines and autism.

The CDC gave the IOM a bad study to base their opinion on, and the IOM gave them back a bad opinion for the CDC to base their policy on. Current CDC vaccine policy and its safety claims are built on a house of cards and both the Verstraeten Study and the 2004 IOM opinion should be formally retracted.

It is long past time for open investigations and open hearings into all of the CDC’s misbehavior and mismanagement in this matter and I renew my call to Congress to begin proceedings with all due speed.

Witness number one to testify should be Thomas Verstraeten.

UPDATE: MJ points out:

Not that I disagree with you but I wanted to point out that Verstraeten did talk about being involved with discussions after he left.

This is from a letter to the editor published from Verstraeten in Pediatrics in April 2004:

"Although I have been involved in some of the discussions concerning additional analyses that were undertaken after my departure from the CDC, I did not perform any of these additional analyses myself, nor did I instigate them."

http://pediatrics.aappublications.org/cgi/content/full/113/4/932

It will be interesting to see the transcript of the conference call to see how heavily he influenced the direction of the 'analyses'.

But really it doesn't matter. Ethical lines are drawn for a reason, just crossing them a tiny bit is still crossing them.

Head's Up. More CDC CYA/BS Commin' Our Way

The CDC truly has no shame.

They didn't even include autistic children in this study. How much you wanna bet that dispite this fact, we will be reading media headlines that say, "new CDC study proves that vaccines not linked to autism".

[Update: That didn't take long. "New Study Results: Vaccines Not Tied to Autism"]

Exclusion of low birth weight babies, 70% participant drop out rate, focusing on blood mercury levels and ignoring brain mercury, conclusions not backed up by the data, conflicts of interests with all the researchers and on and on...

It is like a greatest hits of all the bad research done in the last decade wrapped up in one convenient package.

This thing looks to be Verstraeten all over again.

Thanks to A-CHAMP for the heads up.

Dear A-CHAMP subscribers:

On September 27, 2007 the New England Journal of Medicine will publish a study entitled, "Early Thimerosal Exposure and Neuropsychological Outcomes at 7 to 10 Years." For more than two years we at A-CHAMP have been hearing rumors of a new study that "exonerates" thimerosal, despite the fact that the study results were supposed to be kept strictly confidential.

Now the rumors have been turned into hype - another government funded study that tries to spin data and clear thimerosal of any suspicion of causing neurodevelopmental disorders. The study authors claim in their "Conclusions" that "[o]ur study does not support a causal association between early exposure to mercury from thimerosal-containing vaccines and immune globulins and neuropsychological functioning at the age of 7 to 10 years."

The statement is plainly false. The study's conclusions do not reflect the study's data or the limitations of the study,

Unfortunately we have come to expect misleading statements – some might say fraudulent statements – from studies emanating from the CDC and their associates. It is not merely the fact that the authors of the study are burdened by large conflicts of interests - almost all of the 18 study authors have worked for vaccine manufacturers, received money from them, or performed research on their behalf. What is truly shocking about this study is that it does, indeed, find significant associations between thimerosal-containing vaccines and tics, speech, executive functioning and attention, but irresponsibly dismisses the associations. The study did not even look at children with autism – that is the subject of another uncompleted study – and children who might be more vulnerable to mercury, like low birth weight babies and children from families with lower incomes, were excluded or under-represented in the study sample

Fortunately, an advocate from our own community was an external consultant to the study, participated in its development from the outset, and is intimately familiar with the data and methodology. She has dissented from the study's conclusions. In addition, our colleagues and fellow parents at SafeMinds will be issuing a critique of the study in the near future. We are also told that the study data will be made publicly available so that independent researchers may examine it and draw their own conclusions.

Although detailed analysis of the study is beyond the scope of this letter, below are some key points that cause us to distrust this study as another attempt to manipulate the scientific and public debate on thimerosal to the detriment of the health and safety of America's children:

1. The Study's Claim of No Causality is Contrary to the Study's Data

The study authors claim that the data disproves causality when in fact, several findings show a negative effect on neuropsychological functioning warranting more study. At least one such adverse association was also found to be associated with low dose thimerosal exposure in other studies. As with earlier studies hyped by vaccine promoters, the study is unable to prove or disprove causality. The blanket dismissal of the troubling neuropsychological outcomes in this study is disingenuous and misleading.

2. Children with autism were excluded from this study

The early media contacts we have received suggest that this study shows no association between thimerosal and autism. In fact, the study specifically did not look at children with autism as the sample size was too small and the testing is impossible to complete for the typical child with autism. The exclusion of children with autism from the study may have undermined the power of the study to draw any conclusions about thimerosal.

3. The Study's Authors Misrepresent Previous Toxicokinetic Studies of Thimerosal

The study authors falsely claim that research by Burbacher et al. at the University of Washington (distribution of thimerosal as compared with methylmercury in infant monkeys) shows that ethylmercury is safer than methylmercury. But the authors focus only on the blood "half-life", ignoring data, showing twice as much inorganic mercury trapped in the brains of monkeys than from same dose of methylmercury.

4. The Study's Methodology has Serious Limitations Negating Any Conclusions Drawn

Major flaws that that causes a large underestimation of neurological adverse effects burden the study: 70% of the families recruited for the study failed to participate. This kind of bias in epidemiological studies is well known to distort even large studies of health effects. (See , for example, NY Times Magazine, "Do We Really Know What Makes Us Healthy" by Gary Taubes 9/16/07). It is well established that people who choose to participate in this kind of study are probably very different than those who refuse to participate (the "healthy person" or "complier" effect); especially when the ones who refused to participate said they were too busy.

Simply put: if you have a kid with ADHD or mild ASD or other neurodevelopmental disorders, you are likely to be busier, more stressed, and less available than the mother of a healthy normal child. This phenomenon serves to amplify the effect of the "complier", the "healthy families," - those who do cooperate with the study - confounding or confusing the study's results. The cooperative parents included in the study were more likely to be those with relatively trouble-free kids

5.Major Conflicts of Interest Burden Almost Every One of the 18 Study Authors

Many of the study authors have either worked for or received money from vaccine manufacturers. Others are employed by the CDC, which has been criticized by an IOM committee for its inherent conflict of interest in promoting vaccines while simultaneously monitoring safety. Many of the remaining study authors have conducted studies for vaccine manufacturers. The conflicts of interest cast doubt on the validity of the study, especially of the clearly biased final conclusions.

6. The High & Low Thimerosal Exposure Groups Too Small to Draw Conclusions

In addition to the number of children of the study being too small to draw statistically significant conclusions, the numbers of children in the high exposure group and the low exposure group were far too small to draw conclusions. Yet the study ignored this limitation and drew sweeping conclusions of no causality.

7.Vulnerable Children Were Excluded from the Study; Early Intervention Was Ignored

Children with a birth weight under 5 lbs. 8 oz. were excluded from the study further skewing the results, as these children are likely more vulnerable to thimerosal than larger babies. In addition, the fact that early intervention may have reduced deficits such as speech delay detected by neuropsychological testing of children aged 7-10 was not accounted for in the study results. There also was no analysis of combined prenatal and postnatal mercury exposures. Only 103 mothers who were exposed to mercury from prenatal immune globulins participated in the study, far too small a group for researchers to draw conclusions regarding the safety of thimerosal in these products.

8. The Study Fails to Account for the Subset of Children with "Efflux Disorder"

Only approximately 1000 children participated in the study, out of more than 3000 that were recruited. In addition to the "complier" bias discussed above, the study sample size is too small to accurately estimate the adverse effect of Thimerosal on the subset of the population who have a problem in mobilizing and excreting mercury. While the study's author's focus on the average time it takes for mercury to clear from the blood, itself misrepresented, we know that in 15% of the population this average is greatly exceeded. It is these children who are vulnerable to the effects of mercury from thimerosal. This study fails to account for the effect of mercury from vaccines on this subset of children.

These are but a few of the serious problems with the study and the way the data have been presented. We look forward to the forthcoming SAFEMINDS critique of the study and thank them for their continued close monitoring and analysis of the scientific research that affects our children.

In the meantime, if you see headlines stating that "Vaccines Cleared in New Study" or "New Study Finds Thimerosal Safe" know that we are all again being played, and that those who we should be able to trust are compromising the truth and the health of our children.

Sincerely,
Bob Krakow, for A-CHAMP

Something Has Happened

Two weeks ago I took a break from blogging to spend time with family who came to visit. Last week was a work catch up week, and I have only begun to catch up with all that has happened in the autism world while I was gone.

As I have been reading, I am seeing things that are surprising me. It is freaking me out a little.

Something has changed around the Cedillo Trial.

I have been following autism news for three years and I have never seen the kind of stories/events that are surfacing.

Dave Weldon and Carolyn Maloney have introduced bipartisan legislation, the Mercury Free Vaccines Act of 2007. Autism Speaks has uncharacteristically decided to back it and oppose AB 16 in Sacramento that would mandate that the State of California automatically adopt any vaccine that the CDC puts on the schedule (and pushed the HPV vaccine). They have never taken a stance on vaccines before. AS is also listing mercury research that was funded by CAN before the merger on their web site, but someone who spends a lot of time on the site said they didn't remember every seeing this page there before. (Anyone know if this is new, or remember seeing it in the past?)

AS has also stepped into the insurance coverage legislation in PA and announced legislative efforts on their web site.

The CDC issued a response to Verstraeten/VSD on their web site with lots of references to thimerosal studies. (I haven't had a chance to read it yet), but how long has it been there? It is not dated and David Kirby, who is a guy who keeps track of these things, didn't even know it was there until a few days ago.

The run up to the Wakefield MMR Trial has reignited doubt in the vaccine in the UK and articles like these are coming out:

At Last They Admit It, This Jab CAN Harm Your Child

The Truth About MMR

DANGERS OF MMR JAB 'COVERED UP'

The Autism Research Institute is now being backed by the giant Autism Society of America, which is now teaming up with Easter Seals who will now make Autism their priority.

Over the last three years, my blog has been visited occasionally by CDC and NIH and a few other government agencies. These visits were few and far between, and always interesting to me when they happened. But now, ramping up with increasing frequency since about April, my blog has been regularly visited by The Powers that Be CDC, NIH, FDA, EPA, HHS, the House and the Senate, The Department of Justice (who are the governments "defendants" in the Cedillo Trial), The Department of Veterans Affairs, The US Forestry Service, The Naval Research Laboratory, Lawrence Livermore Laboratory, The US Census Bureau, dozens of foreign, state and local governments, a slew of Canadian government agencies, dozens of medical centers/health organizations/universities/dental schools including CHOP (Paul Offit's hospital), Johns Hopkins, The Cleavland Clinic, our pharma friends at Johnson & Johnson and Glaxo Smith Klein, Immunize.org, media corporations Tribune and Gannett, The World Health Organization and even one visit from the Nuclear Regulatory Commission

Apparently the Department of Justice is curious to know when and if the Evidence of Harm movie will be coming out.



Here is my blog traffic graph for the last three years.



2005 - nice little blog with decent traffic. 2006 - took a break from blogging for most of the year. 2007 - Started to write again. Feb/March stats broke but I didn't notice. April was Autism Awareness Month (Damn that is a lot of awareness). May - residual autism awareness?? June - suddenly I am twice as fascinating as I have ever been on my best month! July - on track to have 8,000 visitors despite the fact that I have been on vacation most of the time.

As much as I would love to believe that it is my brilliance that people are coming for, it is probably a safer bet that more people (and more people in positions of power to do something) are awakening to the reality that autism is preventable and treatable and are taking valuable time out of their day to investigate for themselves.

Last month I said that the tide had turned. I think I might have been righter than I thought I was and that the tide might start moving faster than I had anticipated.

Even if I had 40 hours a week to sort all this stuff out, I don't think I could do a decent job. I am just going to start posting references to stories with out much comment just so I can get as much out as possible.

NYT: Katie "Denigrating", Wrights "Sympathetic", Autism Speaks "World-Class"

Today in a front page article on the problems at Autism Speaks and the division in the Wright family, the New York Times lives up to its reputation among autism parents as the most biased media outlet in autism reporting today.

As usual, there is much wrong with this article. Here are the highlights.

First, the NYT reports that Autism Speaks is a “Big Tent” organization. The Wright’s may have intended AS to be a “Big Tent” organization, but it is not. Proponents of vaccine safety and biomedical intervention are not welcomed in the tent any more than Katie is, now that she questions the AS line of research. Go ask the other organizations and they will tell you their stories.

[See below, NYT did not get any $ for this ad]
Next, I will start with the day before the article came out. Sunday June 17th Autism Speaks ran a full page ad in the NYT. I called the NYT and found that it costs between $120,000 and $150,000 to run such an ad in their paper. This was done the day before publishing this article that is heavily weighted toward the Wrights and AS, and against Katie and the multiple autism organizations and bloggers that support her position, which are apparently so unimportant that they do not even merit being named, much less their specific concerns even listed.



And here we are back at the same conflict of interest question that I have been harping on all week. How do we accept network news “expert doctors” claim that vaccines are not linked to autism, when those making the claims have ties to the pharmaceutical industry that will be libel if there is a link, and when the commercial immediately following the interview is a prescription drug ad? How do we take the NYT’s word for it when Bob and Suzanne gave them six figures while the interview process was taking place?

Seriously?

[Anon. commenter reports that, "The NYT ad you are talking about is an Ad Council public service announcement and the space to publish it would have been donated by the NYT. No AS $$$ would have been used for publishing this ad."

When I called the NYT this morning they quoted me $150,000 with 20% discount for non-profits and I specified autism.

Checking...]

[Just talked to a nice lady at the Ad Council who works on the AS campaign and she reports that the NYT got no money for the ad. The space was donated. That said, conflict of interest accusation withdrawn. Sorry for the bad information.]

[Hey! I want $150,000 worth of free ad space to tell parents out there that "Autism is Treatable", a much more important message than, "Autism Exists". I am calling the Ad Council back.]

[Generation Rescue reports that they paid $125,000 for their full page NYT ad in 2005]

Ms. Gross and Ms. Strong’s article claims that:

"The Wright family’s fight has captured the attention of the bloggers, who are now questioning everything from its office lease to how it makes grants. The charity rebutted the bloggers’ accusations of improprieties in interviews with The New York Times, which examined its IRS forms and read relevant sections to Gerald A. Rosenberg, former head of the New York State attorney general’s charities bureau. He said nothing he reviewed was untoward.”

As one of the bloggers who is questioning what AS is doing, I am none to satisfied with this “nothing to see here” dismissal of the accusations. Have the Wrights or AS made a public rebuttal of the questions we have raised somewhere, and I have just missed it? Or does the NYT just feel that we should take their word for it that a sufficient rebuttal has been made privately and be satisfied with that?

I am not satisfied with that. I want AS to answer publicly as to why they believe that Park Avenue office space, a $340,000 salary, not paying the ‘autism mom’ director of Autism Everyday for her work, and their “world-class” science board giving millions of dollars in grants to themselves rather than researching the interventions that are actually healing the child whose illness inspired the foundation in the first place (The Wright’s own grandson) does not qualify as ‘untoward’. *(see note at bottom)

I looked up ‘untoward’:

un•to•ward (ŭn-tôrd', -tōrd') adj.
1. Not favorable; unpropitious.
2. Troublesome; adverse: an untoward incident.
3. Hard to guide or control; unruly.
4. Improper; unseemly.
5. Archaic. Awkward.

That pretty much fits the picture perfectly.

And since when is a formal assistant attorney general the one to consult on what is moral and ethical? He is the guy to tell you if something is illegal, but we have not made charges of any law being broken. This entire paragraph was a strawman argument.

Finally, the authors discuss the hurt feelings at Autism Speaks.

Autism Speaks' 'feelings were hurt' by Katie when she said that it is time for the old guard to allow the research to shift to environmental causes and treatments? Again… Seriously??

Note that the response was not, "No they don't need to shift because the genetic course is resulting in assistance to those with autism and here is how..."

Note that the response was not, "Yes it is time to shift, and here is where we are going to make changes..." The answer was "We are offended at your remarks".

I have seen this happen in several places I will label it "The Offense Gambit". [It is probably a recognized logical fallacy with an actual name. If you know what it is, let me know.] It comes in handy when you run out of counter arguments.

Taking offense at comments is what Thomas Verstraeten did when he ran out of ways to defend his terrible epidemiological study against the legitimate critique that was offered.

Here is a little secret about us autism parents. People who try to use The Offense Gambit on autism parents need to understand that it does not work on us. When you get offended, here is what we are too polite to say at the moment:

We don’t care. Either you are guilty of the accusation, in which case we want you to own up to it and fix it so we can get back to helping out kids; or you are not guilty and we will happy accept a legitimate defense of the claim and apologize for our error and get back to helping out kids. Pick one or the other but don't waste our time being offended. We are in the fight of our lives.

Are we to believe that it is reasonable NOT to change the direction of research because even suggesting it will hurt the feelings of wealthy and powerful board members and researchers? Seriously?

I am a family therapist, so I am about the last person who thinks that hurt feelings should be ignored; especially in a broken family. Feelings are important. But there is a time and a place for dealing with feelings. That place is not in a discussion determining where millions of dollars in research funding for a disastrous childhood epidemic will go.

The reason for all the fractiousness and contention in the autism community is because, flat out, parents of autistic kids are sick of being lied to. We have seen the truth with our own eyes and all the lipstick in the world is not going to pretty up that “no vaccine link, no cure, must be genetics” pig enough for us to kiss it the way AS, the CDC and the NYT want us to.

Are you sick of the autism arguments? All of them? Are you ready for healing?
Then see part 2 of this piece coming up on The Rescue Post.

PS. And who the hell are "The Mercurys"? Sounds like a band. Am I one of "The Mercurys"? Is this an NYT invention, because I have never heard it before? Neither had Dan Olmsted when it was brought up to him on C-SPAN today.

*NOTE* Last week Dr. Kreigsman testified at the hearings about something good and constructive that AS did for our kids in regards to advancing the medical communities understanding of our kids GI problems and establishing a consensus on how they should be treated. This is huge and wonderful. This is a great example of the kind of good that AS could do if they wanted to. I am all for giving credit where credit is due and will be writing a full piece on this.

Autism Debate Strains a Family and Its Charity

The New York Times
By JANE GROSS and STEPHANIE STROM
Published: June 18, 2007

A year after their grandson Christian received a diagnosis of autism in 2004, Bob Wright, then chairman of NBC/Universal, and his wife, Suzanne, founded Autism Speaks, a mega-charity dedicated to curing the dreaded neurological disorder that affects one of every 150 children in America today.

The Wrights’ venture was also an effort to end the internecine warfare in the world of autism — where some are convinced that the disorder is genetic and best treated with intensive therapy, and others blame preservatives in vaccinations and swear by supplements and diet to cleanse the body of heavy metals.

With its high-powered board, world-class scientific advisers and celebrity fund-raisers like Jerry Seinfeld and Paul Simon, the charity was a powerful voice, especially in Washington. It also made strides toward its goal of unity by merging with three existing autism organizations and raising millions of dollars for research into all potential causes and treatments. The Wrights call it the “big tent” approach.

But now the fissures in the autism community have made their way into the Wright family, where father and daughter are not speaking after a public battle over themes familiar to thousands of families with autistic children.

The Wrights’ daughter, Katie, the mother of Christian, says her parents have not given enough support to the people who believe, as she does, that the environment — specifically a synthetic mercury preservative in vaccines — is to blame. No major scientific studies have linked pediatric vaccination and autism, but many parents and their advocates persist, and a federal “vaccine court” is now reviewing nearly 4,000 such claims.

The Wright feud has played out in cyberspace and spilled into Autism Speaks, where those who disagree with Katie Wright’s views worry that she is setting its agenda. And the family intent on healing a fractured community has instead opened its old wounds and is itself riven.

The rift began in April when Katie put herself squarely on the side of “The Mercurys,” as that faction is known, on Oprah Winfrey, where she described how her talkative toddler turned unresponsive and out-of-control after his vaccines and only improved with unconventional, and untested, remedies.

In a Web interview with David Kirby, author of the controversial book, “Evidence of Harm: Mercury in Vaccines and the Autism Epidemic,” Ms. Wright lashed out at the “old guard” scientists and pioneering autism families. If the old-timers are unable to let go of “failed strategies,” she said, they should “step aside” and let a new generation “have a chance to do something different with this money” that her parents’ charity was dispensing. [link to the interview at FAIR Autism Media]

Complaints poured in from those who said Ms. Wright’s remarks were denigrating.

So, in early June, Bob and Suzanne Wright repudiated their daughter on the charity’s Web site. “Katie Wright is not a spokesperson” for the organization, the Wrights said in a brusque statement. Her “personal views differ from ours.” The Wrights also apologized to “valued volunteers” who had been disparaged. Told by friends how cold the rebuke sounded, Mrs. Wright belatedly added a line saying, “Katie is our daughter, and we love her very much.”

Ms. Wright called the statement a “character assassination.” She said she had not spoken to her father since. Ms. Wright continues to spend time with her mother, but said they had not discussed the situation.

“I totally respect if her feelings were hurt,” Mrs. Wright said. “But a lot of feelings were hurt. A lot.”

Now other autism families who hoped to put their differences aside are shouting at each other in cyberspace. “Our struggle is not and should not be against each other,” said Ilene Lainer, the mother of an autistic child and the executive director of the New York Center for Autism.

The big tent approach of Autism Speaks appealed to Mel Karmazin, chief executive of Sirius Radio and an early board member and contributor. “If you look at what projects Autism Speaks has funded, we are agnostic,” he said.

Mr. Karmazin, who also has an autistic grandson, added, “I never wanted to look my grandson in the eye and tell him I’m taking just one viewpoint or that I think it had to be genetic.”

Bob and Suzanne Wright are sympathetic to Katie’s plight, having witnessed Christian’s sudden regression and his many physical ailments, mostly gastrointestinal, which afflict many autistic children.

Some in the traditional scientific community worry that Autism Speaks has let Ms. Wright’s experience shape its agenda. She scoffs at the notion. Her parents, she said in a telephone interview, are “courageous” and “trying very hard,” but have been slow to explore alternative approaches.
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Related
On Autism's Cause, It's Parents vs. Research (June 25, 2005)
Times Topics: Autism
Web Link
Autism Speaks Web Site

“You can say it and say it and say it,” she said. “Show me evidence that they’re actively researching vaccines.”

The Wright family’s fight has captured the attention of the bloggers, who are now questioning everything from its office lease to how it makes grants. The charity rebutted the bloggers’ accusations of improprieties in interviews with The New York Times, which examined its IRS forms and read relevant sections to Gerald A. Rosenberg, former head of the New York State attorney general’s charities bureau. He said nothing he reviewed was untoward.

The most distinctive aspect of Autism Speaks is its alliance with Autism Coalition for Research and Education, an advocacy group; the National Alliance for Autism Research, devoted to scientific research into potential genetic causes, with high standards for peer review; and Cure Autism Now, which has championed unconventional theories and therapies.

Which wing of the merged charity is ascendant? Some establishment scientists and parents now fear it is The Mercurys. They point to Cure Autism Now’s having more seats than the National Alliance does on the board of directors and the growing number of research projects that focus on environmental causes.

At a recent benefit gala, featuring Bill Cosby and Toni Braxton, some in the audience were surprised when Mr. Wright announced that all proceeds would go toward environmental research, which generally includes vaccines.

But a list of current research grants on the Autism Speaks Web site suggests that the Wrights, while walking a fine line, are leaning toward genetic theories.

From 2005 to 2007, the charity sponsored $11.5 million in grants for genetic research (compared with $5.9 million by all its partners between 1997 and 2004). It sponsored $4.4 million in environmental research (down from $6 million granted by the partners in the previous seven years). And many of the environmental studies explore what is known as the double-hit hypothesis: That the genes for autism may be activated in some children by exposure to mercury or other neuro-toxins.

Bob and Suzanne Wright say their two-year immersion into the world of autism has been an eye-opener, especially the heated arguments worthy of the Hatfields and McCoys.

Mrs. Wright is aware that the marriage of the Alliance and Cure Autism Now, for instance, could fall apart over opposing ideologies. “I’m not going to let it,” she said. “The truth will rise to the top.”

She is also aware that the rift in her own family needs repair: On Friday, her daughter posted a message on an autism Web site questioning their “personal denouncement of me.”

Yet Mrs. Wright is confident that “we’ll work our way through this.” Autism, she said “has done enough damage to my family. I’m not letting it do any more.”

NBC's Ethics Breach Angers Autism Parents

[UPDATE: NBC's web site reporting that she is 'formerly' of Johnson & Johnson. Will get confirmation of this].

NBC's stunt, using a Vice President of thimerosal lawsuit defendants Johnson & Johnson as their Chief Medical Expert without disclosing her real job is media relations for the Corporation, has garnered the ire of autism parents. Lots and lots of autism parents:

Mr. Steve Capus, President NBC News
30 Rockefeller Plaza
New York, NY 10112
June 13, 2007

Dear Mr. Capus:

The undersigned organizations are writing to you regarding the concerns among families of vaccine-injured children across the country over NBC's recent coverage of the Autism Omnibus proceedings. In particular, we take issue with the comments Dr. Nancy Snyderman made during yesterday's Today show.

While one would hope a "First do no harm" philosophy would have some bearing on the information Dr. Snyderman provides to viewers, clearly it does not.

Dr. Snyderman's ties to Johnson & Johnson, defendants in vaccine injury litigation, are obviously dictating the agenda in her appearances on your network at the risk of the safety of our children. This conflict of interest calls into serious question your journalistic integrity and credibility.

NBC's viewers were exposed to a blatant falsehood yesterday as Dr. Snyderman claimed that vaccines no longer contain mercury. This is not the case,and this misinformation has unfortunately given America’s parents a false sense of security that vaccines are now mercury-free. This false claim puts all of America's children and the unborn at risk of great harm.

The mercury-based preservative thimerosal has never been fully removed from childhood vaccines as Dr. Snyderman vehemently claimed. A simple check on the FDA's website would have confirmed this: http://www.fda.gov/cber/vaccine/thimerosal.htm#t1. Mercury is still in most flu, tetanus, and diphtheria/tetanus vaccines--and an array of vaccines still contain "trace" amounts. (The term "trace" must be used loosely as this aspect of vaccine production is not being regulated and there is some variation on what constitutes a trace amount. As children often receive multiple "trace" amounts of mercury in one sitting, cumulative amounts and potential adverse effects are as yet unknown.)

While no reputable medical practitioner in this country would allow even "trace" amounts of lead to be injected through vaccines given its known neurotoxicity, physicians continue to allow mercury, which exceeds the toxicity of lead by more than 100-fold, to be routinely injected into humans.

As a physician representing NBC, Dr. Snyderman has failed to tell the truth about mercury-containing vaccines and the known dangers associated with them. There is simply no excuse for such careless and false reporting while this country is in the throes of a childhood epidemic of neurological disorders.

During Monday's NBC Nightly News Dr. Snyderman stated, "there really is no science" behind the autism/mercury link. Vaccines and the mercury-based preservative thimerosal have not been ruled out as a cause of autism. To the contrary, there are literally thousands of scientific, peer-reviewed studies supporting the extreme neurotoxicity of mercury and the relationship between mercury exposure and neurological injury. The following link provides a copious amount of research which contradicts what Dr. Snyderman told the American public: http://www.generationrescue.org/studies.html

The CDC's own study conducted in 2000 clearly shows the agency knew that injuries were occurring to children from mercury-containing vaccines, yet the data was manipulated to obscure the link. Lead researcher Dr. Thomas Verstraeten had this to say regarding the CDC’s thimerosal findings:

"...we have found statistically significant relationships between the exposure and outcomes for these different exposures and outcomes. First, for two months of age, an unspecified developmental delay, which has its own specific ICD9 code. Exposure at three months of age, tics. Exposure at six months of age, an attention deficit disorder. Exposures at one, three, and six months of age, language and speech delays which are two separate ICD9 codes. Exposures at one, three, and six months of age, an entire category of neurodevelopmental delays, which includes all of these plus a number of other disorders." (Dr. Thomas Verstraeten, page 40, Simpsonwood meeting transcript)

The full transcript of this secret, closed-door meeting held by the CDC at the United Methodist Retreat Center, Simpsonwood, can be read at NoMercury.org or PutChildrenFirst.org.

Many European countries have banned the use of thimerosal/mercury in vaccines for many years. Seven states have passed legislation banning the use of thimerosal/mercury in vaccines and similar legislation is pending in over 30 additional states. If there was no science to back up the dangers of using mercury in vaccines, we wouldn't be seeing such legislative efforts to ban its use.

In her most recent NBC appearance, Dr. Snyderman was asked why parents were filing claims on behalf of their vaccine-injured children, to which she answered matter-of-factly, "money." This cavalier statement alone goes far beyond contempt and displays an appalling ignorance of the emotional and financial devastation faced by families of vaccine-injured children. This must be addressed by an immediate apology from NBC to all the parents of children suffering from vaccine-induced illnesses.

We urge you to speak with the growing number of scientists who have published research supporting a causal link between mercury in vaccines and neurodevelopmental disorders, and can provide you contact information for these researchers.

Reporting false information is a disservice to the American people. When it comes to the children and the unborn in this country, we should err on the side of safety, regardless of personal belief, conviction, or backing from the pharmaceutical industry.

Based on the misinformation presented by Dr. Snyderman, and the potential for harm this has brought to bear upon children, we ask for her resignation. We will accept nothing less than a full and public retraction of her false statements, along with an apology from your
network.

We expect an immediate response to our request. We can be contacted
at 828-776-0082 or amy@....

Respectfully,
Advocates for Children's Health Affected by Mercury Poisoning (ACHAMP)
Autism Healing Network
Autism Recovery Resources of Washington (ARROW)
Autism Solution Center, Inc
Autism Society of Oregon – Lane County Chapter
Coalition for Mercury-Free Drugs (CoMeD)
David A. Geier,Vice-President Institute of Chronic Illnesses, Inc.
Developmental Delay Resources (DDR)
Dr. Boyd Haley, Bio-Chemist, Chemistry Department University of Kentucky
Educate Before You Vaccinate
Foundation For Autism Information and Research
Foundation for Mercury Injured Children
Generation Rescue
John Wilson, MD Great Smokies Medical Center
K Paul Stoller, MD, President, International Hyperbaric Medical Association
KindTree Productions, Inc
Mark R. Geier, MD, Ph.D., FABMG, President Genetic Centers of America
Maryland Autism Recovery Coalition
Mercury Free Maryland
Moms Against Mercury
Moms of Hope
National Autism Association
No Mercury
SOAR! Salem Oregon Autism Resources
Talk About Curing Autism (TACA)
Texas Autism Recovery
TN4SaferVaccines
Treating Autism in the UK
UnInformed Consent
US Autism and Asperger Association
World Mercury Project