Showing posts with label IOM. Show all posts
Showing posts with label IOM. Show all posts

April 22, 2008

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.

April 11, 2008

Jon Poling: Mitochondrial Dysfunction Not Rare In Autism

Dr. Poling suggesting medically defining "Mitochondrial Autism". I have been calling it "Poling Syndrome".

No matter what it is called, "what Hannah has" has been determined by HHS to be a vaccine injury. It is time for the medical community to define it, find what the percentage of kids with it are, screen for it and catch it before it descends into the "symptoms of Autism".

And if the medical authorities won't hear it from me, hear it from Jon Poling:

"As a neurologist, I have cared for those afflicted with SSPE (a rare but dreaded neurological complication of measles), paralytic polio and tetanus. If these serious vaccine-preventable diseases again become commonplace, the fault will rest solely on the shoulders of public health leaders and policymakers who have failed to heed the writing on the wall (scribbled by my 9-year old daughter)."

Reform the vaccine schedule before everyone abandons it.

Father: Child's case shifts autism debate
By Jon S. Poling
For the Journal-Constitution
Published on: 04/11/08

Autism in the U.S. has reached epidemic levels, at 1 in 150 children. Dr. Julie Gerberding, director of the Centers for Disease Control and Prevention, has recently upgraded autism to "an urgent health threat." The most contentious issue of the autism debate is the link to routine childhood vaccines. My daughter's case, Hannah Poling v. U.S. Department of Health and Human Services, has changed this debate forever. Hannah has pointed us in a new and promising direction —- the mitochondria.

On Nov. 9, 2007, HHS medical experts conceded through the Department of Justice that Hannah's autism was triggered by nine childhood vaccinations administered when she was 19 months of age. This concession was granted without any courtroom proceedings or expert testimony, effectively preventing any public hearing discussing what happened to Hannah and why. Contrary to some reports, the Special Masters, "judges" who preside over the "vaccine court," did not issue a decision.

Four months later, on March 6, with trepidation my wife, Terry, and I stepped forward to announce this news —- providing hope and awareness to other families. The HHS expert documents that led to this concession and accompanying court documents remain sealed, though our family has already permitted release of Hannah's records to those representing the almost 5, 000 other autistic children awaiting their day in vaccine court.

Mitochondria key

To understand Hannah's case, it is important to understand mitochondria, which act like batteries in our cells to produce energy critical for normal function. Because the government's concession hinged on the presence of Hannah's underlying medical condition, mitochondrial dysfunction, some claim the decision is relevant to very few other children with autism. As a neurologist, scientist and father, I disagree.

Emerging evidence suggests that mitochondrial dysfunction may not be rare at all among children with autism. In the only population-based study of its kind, Portuguese researchers confirmed that at least 7.2 percent, and perhaps as many as 20 percent, of autistic children exhibit mitochondrial dysfunction. While we do not yet know a precise U.S. rate, 7.2 percent to 20 percent of children does not qualify as "rare." In fact, mitochondrial dysfunction may be the most common medical condition associated with autism.

Biological markers

Although unlikely, if the Portuguese studies are incorrect and mitochondrial dysfunction were found to be a rarity occurring in less than 1 percent of all autism, it would still impact up to 10,000 children (250,000 worldwide), based on current estimates that 1 million people in the U.S. (25 million worldwide) have autism. If, on the other hand, the research showing that 7.2 percent to 20 percent of children with autism have mitochondrial dysfunction is correct, then the implications are both staggering and urgent.

Autism researchers do not currently understand whether mitochondrial dysfunction causes autism or is simply a secondary biological marker. Autism clearly has many different causes, and should really be separated into multiple autism(s). I propose that we clearly identify and research the subpopulation term of "mitochondrial autism," which is distinguished by its unique biological, but not genetic, markers.

Based on what we know now, it is time to follow the prestigious Institute of Medicine 2004 report regarding autism and vaccines:

"Determining a specific cause (for autism) in the individual is impossible unless the etiology is known and there is a biological marker. Determining causality with population-based methods requires either a well-defined at-risk population or a large effect in the general population."

A paradigm shift

When the IOM report was published, mitochondrial dysfunction defining an autistic subpopulation was not firmly established. Today there is no doubt that mitochondrial dysfunction represents a distinct autism subpopulation biological marker. I urge health officials and the IOM to embrace their own report and pursue this breakthrough in the science of autism. National public health leaders, including those at CDC, must now recognize the paradigm shift caused by this biological marker with regard to their current position of dispelling a vaccine-autism link.

In light of the Hannah Poling concession, science must determine more precisely how large the mitochondrial autism subpopulation is: 1 percent, 7.2 percent, 20 percent?


Based on the 2004 IOM analysis, if the mitochondrial autism subpopulation is found to be relatively uncommon, then all conclusions from prior epidemiological studies refuting an autism-vaccination link must be discarded. New studies then need to be performed exclusively with the mitochondrial subpopulation. If mitochondrial autism turns out to be common, then we could re-analyze the data from prior studies to determine if these studies were powered sufficiently based on a predicted effect size. If not powered appropriately, the conclusion refuting an autism-vaccine link would again have to be rejected. These statistical concepts are basic.

The current vaccine schedule, co-sponsored by the CDC and the American Academy of Pediatrics, injures a small but significant minority of children, my daughter unfortunately being one of those victims. Every day, more parents and some pediatricians reject the current vaccine schedule. In an abundance of caution, meaningful reform must be performed urgently to prevent the re-emergence of serious diseases like polio or measles.

Need for research

As a neurologist, I have cared for those afflicted with SSPE (a rare but dreaded neurological complication of measles), paralytic polio and tetanus. If these serious vaccine-preventable diseases again become commonplace, the fault will rest solely on the shoulders of public health leaders and policymakers who have failed to heed the writing on the wall (scribbled by my 9-year old daughter).

The mitochondrial autism scenario that my daughter has so eloquently painted has the CDC and public health experts logically cornered. Denial and fear tactics won't close Pandora's Box. Whether we find that mitochondrial autism is rare or common, there is urgent research left to be done to fully understand the interrelationship of vaccines, autism and mitochondria.

Reform of the vaccine schedule will be an important part of the solution, whether vaccines play a major or minor role in autism. Our public health agencies and programs need a reconstruction plan. Day one of the reconstruction hopefully starts at the Vaccine Safety Advisory Committee's Working Group, to be held at HHS headquarters today in Washington.

Dr. Jon S. Poling is a practicing neurologist in Athens and clinical assistant professor at the Medical College of Georgia.

March 29, 2008

An Invitation to Julie Gerberding to Help Her Find the Missing Information on Autism

Yesterday CNN posted an interview with Julie Gerberding, head of the CDC, whom many parents of autistic children, myself included, want removed from her post for her… well… I will be generous and call it “mismanagement” of the autism epidemic.

Dr. Gupta, who has seemed to actually want to investigate this since the Poling Case was brought to our attention, did the interview, and unfortunately, could not have made it easier on her. He lobbed softballs and challenged nothing that she said. But he did say he would “stay on this”, so I am not giving up hope on him.

Of course she stuck to the same talking points, ‘CDC cares about autism’, ‘CDC are parents too’, ‘autism rates the same, just better recognition’, ‘more needs to be done’, but failed to mention that she has been saying those same things since she took the job six years ago, but has not actually done one single thing for our kids.

I would just like to call attention to a couple of her bullshit (*) remarks:

“There have been at least 15 very good scientific studies and the Institute of Medicine that has searched this out. And they have concluded that there really is no association between vaccines and autism”


The IOM report and two of those “very good” studies are the thing that got me into this debate in the first place. (David Kirby wrote a very fat book about them, which CDC still has not responded to.) The IOM decision was a horrible one. It was not based on the research presented at the meetings, the findings contradicted themselves and we have the transcripts of one of the first meetings in which they say no matter what information comes to light, they were going to give CDC what they asked for, which was that vaccines would not be indicted.

When asked about the transcripts, Dr. Harvey Fineberg, head of the IOM, states that this is an incorrect interpretation of the comments, but will not offer any alternate interpretation of what else they could mean. (I wrote to him personally, but got no response.)

Additionally… well… if you read my blog you already know how I feel about those “very good” studies.

“33,000 children a year are saved from death associated with vaccines because of our immunization program”


There is absolutely no way for her to know this. As far as I know there is no door way into an alternate universe where everything is the same except that vaccination does not exist so that she can count how many kids there die and come back and make the report to us.

“One of the things that concerns me, while the attention is focused on vaccines, in a sense, it means that people are not looking for other causes."


Nice misdirection, but you forgot to misdirect us to something. What are these other causes that we might be examining? It can’t be genetics because pretty much ALL of the government research dollars have been going into them for decades. What is it that we have become distracted from?

And now for the biggest bullshit statement of the day:

“And we have got to keep reminding ourselves that the vaccine story is one that has been debated for many, many years now. We keep looking and looking and looking and really cannot turn up any information”.


Oh. My. God.

Really? Seriously? (Where are Amy and Seth when you need them).

Because I can. Random mom in a little town in Maine with internet access and the ability to read is finding more information than you can with your thousands of scientists and billions of dollars?

Come on Julie. (Can I call you Julie? I feel like I know you personally since your actions have had such a directly destructive impact on my son and the course of the lives of each of the members of our family) Let's set the bullshit aside. I know that you know that information too, because CDC visits this blog every day, Monday through Friday. (Half the time it is to read about what we are all saying about you personally).

Tell you what. I will give you the benefit of the doubt on this one. Perhaps all this information on causes and treatments has escaped your attention. But you are in luck!

The spring DAN! Conference is next week in Cherry Hill, NJ and they have LOADS of this missing information that you cannot seem to find. So I want to offer you a personal invitation to attend the conference with me.

I will pay all your expenses. And by that I mean I will make JB Handley pay all your expenses because I am broke from treating Chandler for his ‘autistic symptoms’. (update: JB confirmed, he's got you covered.)

Just let me know where and what time to pick you up on the evening of Wednesday, April 2. World Autism Day.


* My apologies for using this crass term for those who may not believe that it is appropriate, but after four years of hearing this junk, I have come to the conclusion that it is really the only accurate term to describe these statements any more. I will be using it from now on as a technical term to describe the form of speech described by Princeton Professor Harvey G. Frankfurt in his 2005 ethics book, “On Bullshit”.

UPDATE: Apparently I am a plagiarist. Mark Blaxill gave a talk at the 2006 Autism One conference where he invokes Frankfurt's ideas in reference to Harvey Feinberg's epidemic denial comments. It is a great talk and appropriate to the absurdity of the statements coming out of the CDC and their fellow travelers these days so I will post it. I had heard the speech from the podcast a few years ago and forgot about it. I thought John Stewart had introduced me to Frankfurt, but apparently I misremembered. ;)
HT: Carrie Elsass

May 24, 2007

Simpsonwood Remembered

From the National Autism Association and Mom's Against Mercury:

The Simpsonwood Remembered Rally is getting close!

Join us on June 8th, at the CDC in Atlanta Georgia, in remembrance of the anniversary of the infamous CDC meetings at Simpsonwood and to celebrate and support the United Methodist Women's Division.

Also join us for a poolside meet and greet at the Emory Inn on Thursday June 7th at 7pm (straight through the front doors and outside to the courtyard). T-shirts and magnetic car ribbons will be sold there. T-shirts are $15.00 and the magnetic car ribbons $7.50. We will be raffling off some T-shirts and ribbons at 8pm. Both T-shirts and ribbons are of limited quantity.

Just a reminder that we will be meeting the morning of June 8th at 6:15am in the Emory Inn parking lot (1641 Clifton Road, Atlanta, GA).

Thank you all for your continued support and hope to see you there!

For more rally information: http://www.momsagainstmercury.org/rally-simpsonwood.htm

For more information about the infamous Simpsonwood meetings held June 7-8, 2000 please go to:
www.PutChildrenFirst.org and www.NoMercury.org

January 6, 2006

The Age of Autism: CDC Probes Vaccines

The Age of Autism: CDC probes vaccines
By DAN OLMSTED
UPI Senior Editor

The CDC is continuing to investigate whether a mercury preservative in childhood immunizations has caused cases of autism -- despite the fact a report it paid for said such research should end.

The agency wants to determine whether exposure to the vaccine preservative, called thimerosal, can be linked to autism spectrum disorders, Glen Nowak, director of media relations at the Centers for Disease Control and Prevention, told Age of Autism on Friday.

The study includes 300 children with ASDs, 200 of whom have full-syndrome autism, as well as a comparison group of children who do not have the disorders.

In 2004 a CDC-funded report by the independent Institute of Medicine concluded there was no evidence of a vaccine-autism link and efforts should go instead to "promising" autism research.

"Further research to find the cause of autism should be directed toward other lines of inquiry," the immunization review panel said. "It's really terrifying, the scientific illiteracy that supports these suspicions," said Dr. Marie McCormick, chairwoman of the IOM panel, in a New York Times article in June.

And the head of the CDC's immunization program said the same year that only "junk scientists and charlatans" take such a link seriously.

Nevertheless, spokesman Nowak said the CDC -- which sets the childhood immunization schedule that states adopt -- has not eliminated thimerosal as a suspect.

"We do agree the preponderance of evidence to date suggests there is no association between thimerosal and autism," said Nowak when asked why the CDC was continuing to pursue the issue. But he said CDC Director Dr. Julie Gerberding is committed to exploring all possibilities until the cause or causes of the disorder are identified.

"Dr. Gerberding has made it clear the CDC has not ruled out anything as possible causes of autism, including thimerosal," Nowak said. "Science is a dynamic process. We have continued to fund studies to look at the role, if any, of thimerosal."

The study was designed in 2003 and data collection -- which includes evaluation of each child and their immunization history -- began last year, Nowak said. A letter dated Nov. 8 and an accompanying brochure were provided by a parent who received them.

"In this study, the CDC wants to find out if children who received vaccines and medicines with Thimerosal as infants are more likely to later have developmental problems such as Asperger's Syndrome or autism," says the letter, sent on behalf of the CDC by a research firm and Kaiser Permanente, one of three HMOs involved.

"Your participation in this study may help doctors learn about the possible risks of vaccines and medicines that contained thimerosal."

The mother who received the letter expressed dismay because most medical experts and federal health authorities have reassured parents thimerosal does not cause autism and is not responsible for the large increase in diagnoses beginning in the 1990s.

In 1999 the CDC and the American Academy of Pediatrics urged manufacturers to phase out thimerosal from childhood immunizations as soon as possible, based on the concern that the total amount of mercury received by a child could exceed some government guidelines.

But, citing five subsequent epidemiological studies, the CDC and other health authorities now say there is no evidence of an association.

The CDC continues to recommend flu shots -- most of which contain thimerosal -- for pregnant women and for children 6 to 23 months of age. The agency has declined to express a preference for the thimerosal-free version, citing concern that it might cause some parents to forego immunizing their children against flu if they cannot obtain it.

In addition, tens of millions of children around the world are being injected with thimerosal-containing vaccines, based heavily on the assurances of U.S. health authorities that it is safe and does not cause autism.

Results of the study should be available in September 2007, Nowak said.

July 30, 2005

File under: Things That Call For A CDC Study

The following is an article on Chelation that was brought to my attention by Skeptico and I thought that it was a great article to address as a parent who is currently chelating their child.

Chelation & Autism
Jul 27, 10:41 AM
by James R. Laidler, M.D.

Can chelation help autism?

Chelation is a legitimate medical therapy for disorders caused by an excess of certain metals. Copper, iron, mercury, arsenic and lead are all metals that can cause toxicity disorders that are successfully treated by chelation. Since about 1985, when the idea that autism might be caused by mercury poisoning first arose, many practitioners and groups have promoted chelation as a treatment for autism.

Clearly, the first question that must be settled is whether autism is caused by mercury (or other metal) toxicity—if it is not, then there is no point in treating it with chelation. Unfortunately, this question has become one of many “hot topics” in autism, with much heat and emotion obscuring the scientific data. The first step, then, is to look past the emotion and political maneuvering and examine the data.

When it was first proposed, the idea that autism might be due to mercury poisoning showed a good deal of promise. After all, mercury is a well-known neurotoxin and, additionally, was used as a preservative (thimerosal) in the vaccines children received. With a degree of biological plausibility and a known exposure, the next step was to look for epidemiological data.


One of the problems that complicates the search for the causes and cures of autism is the assumption that it is a single disorder and that all cases are caused by the same thing. This is in contrast to a disease like AIDS in which all cases are brought on by the HIV virus.

What is diagnosed as ‘Autism’ is actually likely to be more than one physical syndrome. Because Autism is a DSM diagnosis and based solely on behavioral criteria, the diagnosis does not address the different sets of physical anomaly clusters that researchers are finding when they look at the biology of ‘autistic’ patients.

One research group has recently made a distinction between two types of autistic profiles. One, labeled complex autism and occurring in about 30% of autism cases, presents with smaller head size, greater chance of low IQ, lower rate of siblings with the disorder and seems to have close to a 1:1 ratio of occurrence between boys and girls.

The other, essential autism, presents with larger head size, few structural brain abnormalities and has a ratio of 7:1 boys to girls.

This is a huge confounder to any epidemiological study, even a well designed one, that looks at all cases of diagnosed autism with out differentiating between groups with different phenotypes.

In discussing research into the causes of autism (in this case the genetic cause), one of the researchers commented, “…Studies haven’t found anything because they’re looking at a big heterogeneous group — a mishmash of people with different etiologies,” Takahashi said.”

One could postulate that only the larger head size group displays autistic symptoms because of mercury poisoning, as mercury toxicity does not always present with impaired IQ; and because in vitro thimerosal toxicity studies preformed at the University of Kentucky showed that estrogen has a protective effect against, and testosterone exacerbates the damage of, ethlymercury as a neurotoxin.

In light of this new information it seems that a better question than, “is autism is caused by mercury toxicity” which is the question largely being asked in these epidemiological studies, would be, “are cases of mercury toxicity being misdiagnosed as autism”.

The answer to that question cannot be found in a large epidemiological study.

The authors of the the final IOM report on the thimerosal/autism relationship in 2004 stated themselves that the epidemiological research it was relying on to clear thimerosal as a cause of autism would not pick up on a sub-set of the population that was genetically vulnerable to mercury poisoning.

If that is the case, then how much more so to these studies fail to give us meaningful data if the children who may be mercury poisoned are members of two different subsets being confused with one another?

Unfortunately, well-designed studies take a while to complete and publish.


Well designed studies do take time to complete and publish.

This is further delayed that by the fact that health authorities are neither attempting to complete or publish them. Despite years of parents requests, the public health authorities have not yet begun to design, fund or even discuss studying the effects of thimerosal on developing children, nor the safety and effectiveness of chelation on autistic patients.

[Update: I have heard that there are 2 government funded studies getting underway on the effects of thimerosal. I will try to find them and confirm exactly what they are. Still no govenment funded chelation/autism studies.]

Thimerosal was invented in the 1920’s and it’s only safety test was carried out in 1930 on 22 patients with terminal meningococcal meningitis. Patients were followed for several days until their deaths. No long term health problems were noted in the study because the patients had no long term health.

When the FDA was created, thimerosal was grandfathered in and has never been safety tested it to this day despite the fact that it has been implicated in toxic illness every few years going back to 1947.

I will be repeating this point through out my critique of this paper.

This delay left an information vacuum that a number of people immediately began to fill with assertions that autism definitely was or certainly was not caused by the thimerosal in vaccines. This did not make any progress toward settling the question, but instead polarized the issue before the arrival of any real data.

Lurking in the background, undetected in the tumult, were data that could have pointed the way. At least two countries—Canada and Denmark—had removed thimerosal from their vaccines in the 1990’s (Canada 1994, Denmark 1992) and yet had both experienced rises in autism prevalence similar to those in the US and UK.


The findings in the Denmark study have come under serious criticism. When the data of study was reviewed, it was found that the sampling presented fatal flaws. The low incidence of autism during the use of thimerosal can be attributed to the fact that the database that was used only tracked inpatient cases of autism at the time. At the point in time where thimerosal was removed, the database was expanded to include cases that were diagnosed at a large clinic outside of Copenhagen where 20% of the countries autistic patents were diagnosed. At the point in time where thimerosal was no longer used, but the cases of autism seem to have skyrocketed, the database had expanded further to include all cases of autism, inpatient and outpatient, in the country.

The study is further compromised by the fact that several of the coauthors were employed by the Statens Serums Institut, the government owned vaccine manufacturer who would be held liable if it was indeed found that the use of thimerosal in vaccines contributed to autism.

[Update: Kristjan has pointed out here that the Danish health care system and liability laws are different from ours and no such legal liability exists for the Statens Serums Institut. I still wonder what might motivate these researchers to stand buy this study and not protest its poor use. More on that in the comments here, here and here.]

Finally, even if the study were reliable, applying it to the U.S. population as the IOM has done presents problems. Children in Denmark were administered less than half the amount of thimerosal of US children and it was given over a longer period of time.

Further, American children are subject to an autism rate at least 10 times that of Denmark. It seems to me to be like doing a study of Sickle Cell Anemia in Denmark and applying it to the population of Baltimore. Clearly children here have some other intervening factor that increases the threat, be it genetic, environmental or even the thimerosal dosage.

As for Canada, I have seen this mentioned in several places, but I have never seen the actual study. If you have it or know where I can find it, can you please email me so I can look at it? Thanks in advance.

Update: Shannon from British Columbia reports that there is no Canada study or even any Canada data to be studied. She reports that they don't keep track of autism rates and don't offer services. She also reports that thimerosal removal from vaccines was left up to the provinces and that many are still on the shelves. See her comment in the section below for a more detailed explanation.

Additionally, while the childhood vaccines in the US included three (DTP, HiB, HepB) with thimerosal, in the UK, for the past two decades, only the DTP vaccine contained thimerosal. This meant that, despite having a constant thimerosal exposure for nearly twenty years, children in the UK experienced the same rise in autism prevalence.

In 2003, the first study, from Denmark, showed that the prevalence of autism in that country had risen steeply even though thimerosal had been removed from vaccines in the early 1990’s. This study was greeted by howls of outrage from some that advocated the connection between thimerosal/mercury and autism—the authors were roundly disparaged and their integrity and objectivity were impugned. This did not change the fact that the autism prevalence in Denmark has continued to rise, following the same pattern as autism in the US and the UK.

In September 2004, a study from the UK showed no association between thimerosal exposure and autism . At the same time, a review of ten epidemiological studies of autism and thimerosal found that the few studies that found an association between thimerosal exposure and autism had serious methodological flaws. Chief among these flaws was using the Vaccine Adverse Event Reporting System (VAERS) as a source of data.

The chief problem with the VAERS data is that reports can be entered by anyone and are not routinely verified. To demonstrate this, a few years ago I entered a report that an influenza vaccine had turned me into The Hulk. The report was accepted and entered into the database.

Because the reported adverse event was so… unusual, a representative of VAERS contacted me. After a discussion of the VAERS database and its limitations, they asked for my permission to delete the record, which I granted. If I had not agreed, the record would be there still, showing that any claim can become part of the database, no matter how outrageous or improbable.

Since at least 1998 (and possibly earlier), a number of autism advocacy groups have, with all the best intentions, encouraged people to report their autistic children—or autistic children of relatives and friends—to VAERS as injuries from thimerosal-containing vaccines. This has irrevocably tainted the VAERS database with duplicate and spurious reports.


I think that it is clear that the VAERS is a poor source for such studies. The CDC’s Vaccine Safety Datalink is a much better source, but the CDC has blocked it from being reviewed by independent researches despite the fact that congress has directed it to do so and claims that disallowing such access is a violation of federal law. The one team granted access in 2003 was severely limited in what they could do and thus their research effort, although it found a dramatic link, was completely tainted by the process and seems to me somewhat of a false start.

The CDC claims that they welcome research applications, but at last check they had not accepted any.

Testing for mercury

What, then, about the parents who have tested their children and found their mercury levels high? These children may have a legitimate problem with mercury poisoning…if the testing is valid. While laboratory accuracy—and cost—is an issue with many of the “mail-order” labs, a more serious problem is the manner in which the specimen is collected.


Dr. Laidler seems to be saying that contamination during collection and overnight shipping can skew results, but I don’t feel that he has properly addressed the possible process by which mercury would begin to appear in urine samples that had none at the time of excretion.

Many practitioners who advocate chelation routinely use “provoked” or “stimulated” excretion studies. To do this, they administer a dose of a chelating agent (more about them later) and test the urine a few hours later. This practice will routinely and predictably elevate the urine mercury level to several times the “unprovoked” or “unstimulated” level.


What is not mentioned in this discussion of “provoked” excretion studies, is the context in which the study becomes valuable. The working theory in this case is that some autistic children are actually members of a sub-set with a genetic impairment to excrete heavy metals such as mercury. Straight forward blood, urine and hair tests for mercury that would identify mercury toxicity in typical subjects who have been victims of a large mercury exposure would be useless in identifying mercury toxicity in people who have no ability to excrete mercury.

In order to find out if these types of subjects have mercury in their tissue, it must be stimulated. If it is excreted in the urine after the introduction of a chelating agent, then it was present in the body tissue.

Since the normal values listed on the laboratory report are for “unprovoked” specimens, the results will be much higher than normal and can appear alarming.


“Normal values” seem to mean little in these results. When mercury is excreted during a DMSA challenge, it cannot be taken as a true measure of how much mercury is in the tissues. Like clowns coming out of a car, you don’t know how much is in the body until you count all of it when it comes out.

Several factors complicate a getting a true picture of how much is in the body, one being that DMSA binds to lead more readily than to mercury, so if lead is present, the mercury level may be artificially depressed.

Doctors have reported patients excreting up to three and four hundred times the mercury that the baseline showed on the initial challenge.

The only thing that can be said with much certainty is that if you give a chelating agent, and mercury comes out, then it was in there and treatment should continue until it stops being excreted.

The cost of many of the mail-order labs is also a significant concern. A brief survey of some of the bigger mail-order labs revealed that they charge between $175 and $300 for a “panel” of urine metal tests, including mercury. The local hospital lab charges $35 for a urine mercury test.


Being a parent that has paid $300 for such urine metal tests, I am all for lowering the price. However, if I woulda known then what I know now, that the first time I did such a test on my son I would find mercury and lead, and that the chelation we have done as a result would help my son make the progress that he has made, I would happily sign my car over to the lab that delivered me these results.

But that's just me.

[scarcasm alert]I believe a good way to lower the costs of the test in this free market, would be many labs offering this standardized test, and doctors regularly screening children with ASD, ADHD, verbal and developmental delays, and those who have exhibited symptoms of vaccine injury after thimerosal containing vaccines, for mercury poisoning. That might be something that the government could look into.

[Update 2007 - the free market prevails. My son's last urine toxic metals test this month cost $65]

In most cases, the other metals included in the “panel” or of little or no use—there is no research or clinical data that connects some of these other metals to any disorder whatsoever.


I need more information from Dr. Laidler on this point. Does “no clinical data” mean that studies have been done and no connection has been found, or that no studies have been done?

Another questionable practice is the use of fecal mercury levels. The mercury in feces is a combination of ingested mercury (minus the amount that was absorbed) and any mercury excreted into the feces (usually in the bile)—there is no way to truly know how much mercury is being excreted without knowing the amount ingested and the amount absorbed. One thing that is certain, however, is that the fecal mercury level will be higher than the actual amount of excreted mercury, because of the mercury in the food we eat, the water we drink and the air we breathe.


I don’t know any families who have relied on fecal mercury levels in order to make a decision on whether or not to chelate, nor have I read of doctors relying on them. It seems an inaccurate measure of mercury toxicity for all the reasons you mention. Can anyone point me towards a source that recommends relying on it so I can further look into this?

[Update 2007: I have not heard of fecal mercury levels being used in the two years since this was written.]

This brings us (at long last) to chelation.

Chelation—what it is and how it works

Chelation works by using a compound has a stronger attraction (affinity) for mercury than the tissues of the body. Since mercury has a very strong affinity for sulfur, all the effective mercury-chelating agents contain sulfur. This does not mean that any sulfur-containing molecule can act as a chelator, since body tissues also have sulfur-containing components, which are what the mercury binds to. An effective chelator needs to have a higher affinity than body tissues.

This simple fact eliminates some of the compounds that are being touted as chelating agents for mercury. Glutathione, for instance, which has a sulfur-containing amino acid, is not sufficiently greater in its affinity for mercury than the body tissues to be an effective chelator.


The role that glutathione may play in autism is still emerging. Just a few months ago a study was released that found that 80% of autistic test subjects had some degree of glutathione depletion. After reading this I began supplementing over the counter oral l-glutathione and his speech began to progress more rapidly. He went from taking several minutes to put together a simple three word sentence, to spontaneous three and four word sentences in the matter of two months, and a week ago he began pointing things out to me (with his finger), saying, “look, look. Rain”.

I am genuinely interested to know specifics about exactly what it is doing and why such a weak chelator would be so helpful to him. I am looking forward to the question being studied further by federal health authorities.

Another widely used chelating agent, EDTA, not only has little affinity for mercury, but is also not absorbed when taken orally—it must be given intravenously.


There is now a product call Detoxamin that is EDTA in suppository form. Is this well absorbed form? Just curious.

The two agents that are most effective for chelating mercury are 2,3-dimercaptosuccinic acid (DMSA) and 2,3-dimercaptopropane-1-sulfonate (DMPS)
. DMSA has been widely used in the US—primarily for lead poisoning—and has a good safety record.


I am grateful to Dr. Laidler for pointing out that DMSA has a good safety record and is the standard treatment for lead poisoning. I have read many poorly researched reports that claim that all chelation is dangerous and it is quite frustrating.

DMPS has a long history of use in the Soviet Union, but has more toxicity problems. DMPS is popular with some practitioners because it causes a very large rise in mercury excretion, primarily by prompt clearance of kidney mercury stores, making it very useful for “provoked” mercury testing.

DMPS is not approved by the USFDA for any purpose, primarily because it offers no medical advantages over DMSA and is more toxic. Both can be given by mouth, but only DMPS is available in an intravenous form. Given that there is little or no difference in their effectiveness, a practitioner who wants to use DMPS should be viewed with suspicion.


In my experience, this is becoming more generally agreed upon in the autism community, although there are some doctors that have used EDTA and DMPS. I think that the trend seems to be coming back around to the use of DMSA.

The sulfur-containing groups in DMSA (there are two) are mercaptans, relatives of the odorant that is put in natural gas to make it smell bad. In short, it stinks. This can be a problem not only for the child who has to take it, but also for the entire family, as urine that contains DMSA will also have a foul, sulfurous smell. While some manufacturers claim to have overcome the smell “issue”, if the urine doesn’t smell foul, there is no DMSA being excreted and, therefore, no chelation happening.


While it is true that a sulfur odor does present itself, it has never occurred to me that it was a ‘problem’ or even something that a parent might take into account when deciding whether or not to chelate a child with mercury poisoning. Changing diapers more often or airing out the bathroom is little price to pay for a chance to get back your healthy, thriving child.

I did read about one family whose son carried an incredibly strong, unpleasant odor at all times during the first 6 weeks of his chelation. They lived with all the windows open and joked about all the stinky toxins that he was shedding.

They seemed really happy to have his odor problem replace their little boy’s autistic symptoms.

One preparation that deserves comment is transdermal DMSA (or DMPS)—a cream or ointment that is rubbed onto the skin, presumably to chelate mercury. Both DMSA and DMPS are highly water-soluble and do not dissolve well in fat or oil, which means that they most likely won’t be absorbed through intact skin. It is interesting to note that none of the individuals or corporations selling this preparation has—to my knowledge—performed the simple test necessary to prove that it is absorbed. In the absence of this simple bit of data, it must be assumed that it is not absorbed.

Lipoic acid—a sulfur-containing fatty acid—has also been touted as a chelating agent, although its effectiveness has not been well studied. It has the advantage of being considered a “natural” substance, but the few studies that have examined it have found it less effective than DMSA . It is fat-soluble and can potentially cross the skin, but this has not been tested. Its fat-solubility may (or may not) allow it to penetrate the brain tissue better, but this has also not been demonstrated.


Many doctors use this in conjunction with or following DMSA chelation because of its presumed ability to better penetrate into the brain. We have found adding ALA to our son’s chelation accelerated his progress.

Dr. Laidler again notes that ALA has not been tested. I would like to note that parents have been requesting chelation studies be conducted or funded by the national health authorities to no avail.

[Update 2007: We used ALA for a time with Chandler, but it seemed to feed the yeast in his gut and lead to hyperactivity so we did not use it for long. It has fallen out of favor with most DAN docs for this reason.]

A number of naturopathic remedies claim to remove mercury and heavy metals, but this claim is often based on the parent plant’s ability to remove mercury from the environment. As a result, these naturopathic remedies may themselves have a high degree of mercury contamination. At any rate, none of the naturopathic “chelating agents” have been tested to support their claims. In the final evaluation, only DMSA offers the combination of safety and effectiveness that would warrant its use. DMPS is a close second, limited only by higher toxicity.

Safety of chelation

Common less serious side effects of DMSA include nausea, vomiting and diarrhea. Skin rashes have also been reported—these are often erroneously referred to as “mercury rashes” and attributed to the removal of mercury. Regrettably, the same rashes are seen in people who have no mercury toxicity and are merely due to a drug reaction. A rare and unpredictable reaction (and potentially lethal, if not treated promptly) is Stevens-Johnson Syndrome, a severe drug reaction that presents with lesions on the skin and in the mouth and gastrointestinal tract.


My son, like many autistic children with intestinal yeast, can have an increase in hyperactivity while on oral DMSA, so rounds of chelation are spaced out so that a healthy gut can be maintained. Such breaks in chelation also allow for mineral supplementation to assure that the body is not stripped of necessary nutrients during chelation.

No significant adverse drug interactions have been reported with DMSA, but most of the children who received DMSA for lead poisoning were not taking other medications—and most of this experience predates many of the medications used
for autism. Increased zinc and copper excretion has been noticed in animal studies, but this is apparently easily corrected by moderate zinc supplementation. Copper supplementation is generally not needed.

The more serious side effects of DMSA are primarily bone marrow suppression and liver injury. In the thousands of children who received DMSA for lead poisoning, somewhere between 1% and 3% developed either elevated liver enzymes (a sign of liver cell injury), low white blood cell and/or platelet counts (a sign of bone marrow suppression) or both. In all cases, these abnormalities resolved after DMSA was stopped. However, these children were being monitored with frequent blood tests and received treatment for less than three months.

There is a danger that long-term use of DMSA without close monitoring could lead to irreversible bone marrow or liver damage. This has not yet been reported, but is a compelling reason to limit the duration of DMSA therapy and to have blood tests done every one to three months. The safety of DMSA—taken for less than six months—is well-established, but this safety has not been demonstrated over the long-term.


DMSA is available only by prescription and should only be administered under a doctor’s care for just such reasons. Unfortunately, so few doctors are treating autistic patients, for what is ultimately a medical disorder, there are just not enough good doctors to go around.

[UPDATE: Apparently you can get DMSA with out a perscription, which seems odd to me. IMO it should be only used under a doctors care.]

Also... long term studies of chelation should be undertaken by the CDC... but you knew I was going to say that.

Finally, there are as many dosing schedules for DMSA as there are practitioners who make claims about it. As perhaps a ridiculous extreme, one practitioner has asserted that DMSA must be given every two to three hours around the clock! This person also insists that failure to follow this schedule will result in more mercury being deposited in the brain. Fortunately, this is absolutely wrong! Doses as infrequent as once a week have been effective at removing mercury and lead, although at a much slower rate than the recommended dosing schedule of three times a day.


Until the mercury/autism connection is properly studied and the results are treated with honesty and transparency, chelation for children diagnosed with autism will remain to be part science, part guesswork. Yet another reason that the health authorities should do its due diligence and investigate chelation as a treatment for autism related mercury poisoning.

Summary:

[1] Is autism due to mercury?

There is no convincing data supporting a link between mercury or thimerosal and autism. This is not to say that mercury and thimerosal cannot cause autism, just that there is no data to support the connection.


To say that there is "no data to support the connection" is not correct. There is a great deal of data, but the data is not conclusive. It consists of in vetro studies, primate and rodent studies, case studies and small population studies.

Many authors and investigators can still make the point, as Dr. Laidler does, that there is “no convincing data” because the health authorities charged with funding and disseminating such studies (on the scale that people are 'convinced' by) are not doing their job.

Chelation remains one of the most promising medical treatments for what is commonly diagnosed as ‘autism’, yet the government chooses to spend money instead on long term genetic research that will be of no benefit to children who were diagnosed with autism today.

The first large scale research project into chelation for those with autism is just getting underway at the University of Arizona. It is being funded by anonymous private donors.

[2] Mercury testing.

Mercury testing, especially if done with a mail-order lab, can be both misleading and overly expensive. If you truly suspect mercury poisoning, spend $35 for a urine mercury test at your local clinic or hospital—don’t spend up to $300 to get information of questionable accuracy and minimal utility.


I don't think that Dr. Laidler has made his case that the information you get for your $300 is "of questionable accuracy and minimal utility". It was mighty accurate and useful to us.

[3] Chelating agents.

Many of the remedies promoted to remove mercury and other heavy metals are either not effective, not safe or both. Of the available chelating agents for mercury, DMSA offers the best safety and the best effectiveness.

[4] Safety.

Despite its impressive safety record, DMSA is not without side effects. Long-term treatment with DMSA has not been studied (insert comment about how the government should study this-ed) and may result in serious problems. Close medical monitoring is strongly recommended if you decide to use
DMSA therapy on your child.

* * *

Comments
1. Is it not also true that even in the legitimate use of chelation for lead poisoning, there is no expectation of reversing whatever neurological damage has already occurred? I would think this would be another strike against the credibility of chelation for autism.
— Lisa Randall Jul 27, 03:37 PM


It is true that there are no guarantees that getting the mercury out of your child will cure their autistic symptoms, just as there is no guarantee that chemotherapy will cure cancer. Most parents faced with either situation are likely to give their child the chance at recovery even if the odds are not 100%. I do know of two children who did not respond to chelation therapy. Neither child was harmed by it and neither of their mothers regret trying it.

We have no guarantee that tomorrow, the last drop of Hg won't tumble out of our boy and his wonderful progress will come to an end. If it does, we will make yet another one of those course corrections that parents of special kids have to make. But at least we will know that we got him as healthy as we could.

2. The studies that have looked at removal of lead by chelation (that Autism Diva has looked at on pubmed) showed no improvement in IQ or behavior, (or both?)

Brain damage in general is not seen as reversible.


This makes logical sense. But this has not been my experience.

My son called me mommy until he regressed at 18 months in the fall of 2003. In June of 2004 I gave him 300mg of DMSA for his chelation challenge to see if he had mercury toxicity. He was given the dose around 8am and about 6 hours later he called me ‘Mommy’ for the first time in almost a year.

I was in my bedroom cleaning, and he came in and started pulling on my hand. I was trying to finish my task before I went with him to see what he wanted, so I was looking away from him. I thought I heard him say ‘mommy’ so I looked down, and instead of pulling my hand toward the door and looking toward where he wanted me to go, he was looking at my face and called me ‘Mommy’ three more times. I was completely stunned.

At that point I expected that his tests would come back positive for mercury, and they did. There was no question after that whether or not we would try chelation on him.

To respond to Autism Diva’s very good point, I no idea as to why DMSA would have an effect like this if his mercury has caused brain damage. It makes no sense that my son would improve that drastically in 6 hours.

I would REALLY like the federal government to clear this up for Autism Diva and me. They could... oh I don't know... do a study or something?

Some of the autism/mercury parents think their kids got toxified while in the womb from a rhogam shot that had thimerosal in it.

There’s no evidence for that...


Again I must repeat my mantra. There is no evidence that Rhogam plays a role in the development of autism because it has never been studied.

A year ago Lyn Redwood, the head of Safe Minds, was invited personally by Dr. Julie Gerberding, head of the CDC, to submit a wish list of research proposals to her. Among the requested research was a study to see if Rhogam could be involved with the development of autism. I spoke with Lyn last week and she said that neither the CDC nor Dr. Gerberding has never responded to the list that they asked be submitted to them.

I am a Rhogam mom and was surprised that this had not been looked at yet. I am waiting for the CDC and the FDA to go ahead and do this very necessary safety study on an injection that that they have already approved on pregnant women.

but besides that, they think that they can chelate the kid NOW and affect proposed damage do when the brain was developing? They obviously have no clue about brain development and probably have never looked into Fetal Alchohol Syndrome. There’s nothing that undoes that, but the kid can learn to use what he has to the best possible extent.
— Autism Diva Jul 27, 03:46 PM


Autism Diva will get no argument from me (except for the part where she suggests that as the parent of an autistic child I am clueless about brain development).

Why did my son respond so quickly?

I think that the government should study it and find out.

3. Because there’s no way of knowing how much improvement in a child’s behavior and abilities is the result of natural developmental processes, the only accurate way to test chelation would be to perform double-blind studies with autistic adults.

If you’re interested in an unscientific anecdote, I had all of my amalgam fillings removed 10 years ago and took chelation supplements for a few weeks. It was my dad’s idea; he is a major health faddist, antivax, supplements out the wazoo, toxic fumes in the woodwork, you get the idea.

I noticed some improvement in my sense of smell after having the amalgams taken out, but the main benefit was just the nice new pretty composite fillings.

I’m still just as autistic as ever.

So is my dad…
— Bonnie Ventura Jul 28, 09:38 AM


As in Bonnie's case, the anecdotal evidence I have seen seems to suggest the older you are, the less effective chelation is on autistic symptoms. The best results seem to be for children under five and progress seems to really slow down as children age.

I have read several stories though from people who have tried it on their teenagers and even on adults and some progress has been made.

Say it with me:

Sounds like something that the government should study.