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SafeMinds: why won’t you tell your membership about the vaccine safety study you funded? Perhaps because it says vaccines are safe?

28 Aug

Earlier this year a paper was published on vaccine safety: Examination of the Safety of Pediatric Vaccine Schedules in a Non-Human Primate Model: Assessments of Neurodevelopment, Learning, and Social Behavior. This was a followup study to earlier pilot studies that got a lot of attention in the “vaccines-cause-autism” groups (Delayed acquisition of neonatal reflexes in newborn primates receiving a thimerosal-containing hepatitis B vaccine: influence of gestational age and birth weight and Influence of pediatric vaccines on amygdala growth and opioid ligand binding in rhesus macaque infants: a pilot study.)

It is worth noting that the pilot studies didn’t link vaccines to autism. They did make claims that some early reflexes were delayed in the monkeys given thimerosal containing vaccines. If you see someone talking about “root” or “snout” or “suck” reflexes in a vaccine discussion, they are referring to the studies above. These were pilot studies–small preliminary studies to see if it is worth launching a larger study. As such the results should have been taken with caution. But caution is not what groups like SafeMinds (or any of the groups that promote the failed vaccine-autism link) are known for. Inflating any scrap of evidence that can support their political point of view, that’s what they are known for.

SafeMinds made a big deal out of the early studies. Mark Blaxill (then of SafeMinds) called the study a “blockbuster” in a four thousand word analysis. That’s a lot of space to devote considering the full study was eight thousand words. And, as noted already, preliminary. But politics is politics.

Now, an intellectually honest person, or group, would watch for the followup study and report on it no matter the result. Because, let’s face it, if you are going to spend 4000 words overstating the importance of a study, scaring people and instilling them with guilt and pain over their child’s disability, you have a responsibility to do a follow up.

If you are intellectually honest.

So, as noted above, the follow up study was published. It was published in April. Four months ago. And I don’t see anything from Mr. Blaxill on the Age of Autism blog (where he posted his “blockbuster” article) or at the SafeMinds website on the followup study. SafeMinds has their own blog, and if you search it for, say “snout”, you get this article (Ground-Breaking Monkey Study: Mercury-Containing Hepatitis B Vaccine Causes Brain Damage) on the pilot study, calling it “groundbreaking” and claiming that it demonstrates that the thimerosal containing HepB vaccine causes brain damage.

Very strong words. Words which, if overblown, are very damaging. Imagine going through life as a parent thinking that you agreed to a vaccine and that caused brain damage to your child. Now imagine that the evidence you used to draw that conclusion was (a) not strong to begin with and (b) now refuted.

Wouldn’t you want to know the truth? Wouldn’t you expect the people and the organizations that convinced you of this falshood to seek you out and correct their mistake?

And this is why people don’t hold Mr. Blaxill or SafeMinds in high regard. They are quick to scare but don’t have the courage to admit they were wrong. Courage isn’t standing up and saying unpopular truths. Courage is standing up and admitting that your “unpopular truth” was, in fact, not the truth at all.

Now, why pick on SafeMinds in specific here? A lot of people and groups jumped on the pilot study and spread a lot of fear. Check out the footnotes of the study.

This work was supported by the Ted Lindsay Foundation, SafeMinds, National Autism Association, the Vernick family, and the Johnson family

SafeMinds helped fund the new study. The one they are ignoring. They were likely aware of the results before they were published. But no word.

I expect more from decent advocacy organizations. But I am not surprised with SafeMinds, nor Mark Blaxill.

Yes, the National Autism Association did too and they need to step up as well (a point I hope to make in a later article).

How about the Johnson Family? Well, the Johnson Center stepped up and put out a press release New Research Finds No Evidence That Thimerosal-Containing Vaccines Affect Neurodevelopment and Behavior in Infant Primates. (all SafeMinds, the Age of Autism and the National Autism Association needs to do as a start is publish the press release).

Here’s the last sentence of the press release, quoting the lead researcher: “Despite these limitations, the data in this primate study overwhelmingly provides support for the safety of pediatric vaccines”

It would take a lot of courage for SafeMinds and Mark Blaxill to publicize such a statement. More than they have.


By Matt Carey

Was autism ever a first advocacy priority for those promoting the idea that vaccines cause autism?

2 Mar

Years back the evidence was rolling in debunking the hypotheses that the MMR and/or thimerosal in vaccines causes autism. At that time I naively wrote some colleagues in online writer’s community about how perhaps the groups that had been advocating about autism being a vaccine-induced epidemic would now become actual autism advocacy groups. They were at a fork in the road: become autism organizations or focus solely on vaccines. But acting like they were doing both was no longer going to work. One writer responded in a way that has stuck with me as he has been shown to be dead on right. Dr. David Gorski (who writes at Science Based Medicine among other places) was the colleague and I he said essentially: it has always been about the vaccines for them and it always will.

Years later it’s obvious: Dr. Gorski was correct. I was wrong. And we are seeing good examples of that now in this measles outbreak as groups like Safeminds and, of course, the Age of Autism blog chime in with articles downplaying the dangers of measles. A prime example recently came on AoA from Mark Blaxill. Mr. Blaxill is largely responsible for the thimerosal scare of the past decade. He wrote a paper (published in the non peer reviewed Medical Hypotheses) Thimerosal and autism? A plausible hypothesis that should not be dismissed. It was junk when it was published, it’s junk now.

His recent article on AoA is “Measles Hysteria — The Truth About a Non-Epidemic in Eight Simple Slides”. It’s junk and one could spend an article debunking each point. But Let’s take a more focused look. He has a slide “Why Measles is No Longer a Threat in the U.S.” (click to enlarge)

M Blaxill misinfo 1

So, it was supposedly 1500 infections ago that someone in the U.S. died of measles. Only 1 in 1500 or so and so it’s not a big deal. Mr. Blaxill even called (or got someone from his organization to call) the CDC for a statement. Who knows what was asked, what was said. Maybe the CDC spokesperson made a mistake. You see, Dr. Vincent Iannelli at Pediatrics.About.Com actually tabulated measles deaths in the U.S. in recent years. Even with a low infection rate, people die of measles and have died in the U.S.. After presenting the data for each year he summarizes:

So that’s 10 measles deaths since 2000 and at least 7 measles deaths since 2005.

Why do people say that there have been no measles deaths in the United States in the past 10 years? Whether they are misinformed or intentionally trying to misinform people, they are wrong.

One can confirm this on the CDC Wonder website. Here’s a screenshot.

This isn’t about proving Mark Blaxill wrong on some point. Because in the end it doesn’t matter if it’s one death or ten deaths, it’s too many. But I suspect 1 death or 10 deaths wouldn’t change Mr. Blaxill’s assertion that measles is a minor deasease.

\Those 10 measles deaths Dr. Iannelli mentions are deaths that occur during the infection, usually from complications like pneumonia or encephalitis. But the thing about measles is that it can kill years later. There’s a condition called SSPE, Subacute Sclerosing Panencephalitis. You see, for some people, the measles virus enters the brain and stays there. And slowly kills.

From Dr. Iannelli:

About 6 to 8 years after having measles, children with SSPE develop progressive neurological symptoms, including memory loss, behavior changes, uncontrollable movements, and even seizures. As symptoms progress, they may become blind, develop stiff muscles, become unable to walk, and eventually deteriorate to a persistent vegetative state.

Children with SSPE usually die within 1 to 3 years of first developing symptoms

and

That’s 32 SSPE deaths since 2000 and at least 19 SSPE deaths since 2005. Why so many? Many of them can likely be attributed to the large number of cases associated with measles outbreaks from 1989 to 1991.

There is no cure for measles infection. There is no cure for SSPE. One can read more about SSPE at the link given above or at a recent article at Science Based Medicine: SSPE: A Deadly and Not-That-Rare Complication of Measles.

Mr. Blaxill includes a quote from someone in the 1963 who stated that measles is of “moderate severity” or “low fatality”. Perhaps to someone who lived through the early 20th century when measles was even more deadly, this might seem so. Perhaps. But not now. And how can someone ever use the phrase “self limiting” about a disease that can lead to SSPE? SSPE is only “self limiting” in the death of the patient.

Another of Mr. Blaxill’s slides shows the decline in measles infections and deaths following the introduction of the vaccine. Mr. Blaxill annotated this with his own observations (click to enlarge):

M Blaxill misinfo 2

Here’s the thing that pops out of that graph: the death rate has remained constant at about 1 in 1,000 since at least 1950. Take a look at any datapoint in the deaths and go up a factor of 1,000 and there’s the infection rate. And that doesn’t account for SSPE deaths years later.

Over the years I’ve found that Mr. Blaxill often takes an unreasonable and unfounded stance on issues. But since when is a death rate of 1 in 1,000 low enough to state “Why Measles is No Longer a Threat in the U.S.”?

For comparison, Mr. Blaxill informs us that there have been 80 deaths attributed to measles containing vaccines reported to VAERS (the Vaccine Adverse Event Reporting System) in the past 10 years. He ignores, as most people do who use VAERS in this manner, to include the disclaimer one must acknowledge in order to access VAERS data, which concludes that VAERS data do not imply causality. But let’s for the moment assume that every report to VAERS is causal. 80 deaths. There are about 4 million babies born in the U.S. each year. About 90% get the MMR vaccine. Twice. Over 10 years. That’s nearly 80 million doses of MMR vaccine administered. So, even if we take each report to VAERS as causal, that would be 1 death in 1 million doses. 1 death in 500,000 infants. This is a huge over estimate given the assumptions, but let’s do the difficult: compare these numbers. To Mr. Blaxill 1 in 500,000 is too many, but 1 in 1,500 is “low fatality”.

Even using the Mr. Blaxill’s flawed assumptions, his logic doesn’t make any sense.

Let’s take a look at Mr. Blaxill’s concluding slide so I can bring this back to how it shows that he has abandoned not just logic but also the autism community. I’ve highlighted one sentence that is particularly important. (click to enlarge):

M Blaxill misinfo 3

Measles has ceased to be a dangerous illness? Seriously? First, the idea that we can accept 1 out of 1000 people dying due to measles is just astonishingly bad advocacy. For that point alone we in the autism community need to distance ourselves from Mr. Blaxill and people like him. These irresponsible actions are not the actions of the autism community.

That said, let’s consider this key phrase: “in healthy children”. If you will, try to recall back in the day when Mr. Blaxill presented himself as an autism advocate. Actually, we don’t even have to go back that far, only recently he was telling a congressional hearing:

In New Jersey, 1 in 29 boys born in 2000 were diagnosed autistic.

What’s going on? Why are so many American children sick?

The message he had for many years was that autistic children are sick. Not healthy. His former organization (Safeminds) would be quick to point out a number of conditions that are more common in autistics than in the general population. Since even by his own definition autistics are not “healthy”, why should we let measles return in force to the U.S.? Of course it is Mr. Blaxill’s failed hypothesis that vaccines are making children “sick”. But let’s consider this very real point: the developmentally disabled are more likely to become sickened by infectious diseases and they are more likely to die (Why vaccination uptake matters to the autism community).

And that’s ignoring the fact that a large fraction of autistics are also epileptic. And a huge trigger for seizures is infectious disease and the prolonged fever that comes with it. Perhaps Mr. Blaxill is unaware of the term status epilepticus, the situation where someone gets into a state of constant seizures. And, yes, this can be brought on by infection.

Or perhaps Mr. Blaxill has forgotten the emphasis his community placed on mitochondrial disease and autism just a few short years ago.

From a U.C. San Diego Metabolic Deseaese Center website, the paragraph: What is Mitochondrial Disease?

If a child is stricken with a catastrophic disease affecting three or more organ systems, or if a child has been afflicted with a relapsing disease that affects two or more organ systems and leads to slow but measurable deterioration, he or she may have a mitochondrial disease. At times, mitochondrial diseases can cause isolated symptoms. These may include unexplained seizures, low blood counts, dystonia (abnormal muscle tone or spasms), blindness, deafness, dementia, ataxia (stumbling or tremors), cerebral palsy, heart failure, or progressive muscle weakness. More often, however, several organ systems are affected in sequence, one faltering or failing after another. Good periods are frequently punctuated by abrupt deteriorations that are caused by simple infections. For children with mitochondrial disease these infections can be life threatening, and leave them with deficits that cannot be recovered.

Emphasis added. Some fraction of our population does have mitochondrial disease. Allowing diseases like measles back would put this community (as well as those with mitochondrial disease without autism) at huge risk.

I’d like to say that Mr. Blaxill, like many in the “autism is a vaccine-induced epidemic” camp, has lost his way. A very valid question is whether Mr. Blaxill and his colleagues were ever on the path of autism advocacy. Was it always, as Dr. Gorski opined, about the vaccines?

While I’ve entitled this article “Was autism ever a first advocacy priority for those promoting the idea that vaccines cause autism?”, in the end motivations are secondary. Mr. Blaxill’s actions are and have been irresponsible. They are an example of the actions of a group of faux autism advocates that have a history of irresponsible actions. Not just to public health but to the autism communities.


By Matt Carey

Is Autism Speaks supporting vaccine-autism causation proponent Congressman Bill Posey?

19 Aug

Someone forwarded an email from the “Autism Action Network” recently. The email asked people to support Congressman Bill Posey’s election campaign by attending a fundraiser. Looks like a few big donors to Mr. Posey were going to attend, including Sallie Bernard of SafeMinds and Autism Speaks. Ms. Bernard certainly is with both organizations, but I wonder if she was attending as an Autism Speaks officer or if Autism Speaks was even aware that their name was being used to promote the fundraiser.

Perhaps Ms. Bernard wasn’t aware that her Autism Speaks affiliation was being used this way. I’ve seen some of my affiliations used where I didn’t expect nor want them. Perhaps Ms. Bernard was aware that the AS affiliation was being used in this advertisement, but Autism Speaks wasn’t. Perhaps Autism Speaks was aware and supported this effort. I’m not betting heavily on that last option though.

Here’s the list of donors for the fundraiser in the email I got:

Jennifer Larson of the Canary Party and Health Freedom
Sallie Bernard of Safeminds and Autism Speaks
JB Handley of Generation Rescue
Tony Lyons of Shy[sic] Horse Publishing
Barry Segal of Focus Autism
Mark Blaxill of the Canary Party and Health Freedom
Dr. Gary Kompothecras
Teri Costigan

The Autism Speaks name adds a legitimacy to this fundraiser that the other groups just can’t. The Canary Party and Health Freedom (which I assume to be Americans for Health Choice) are basically the same people with “Canary Party” as a political party and “heath freedom” as a charity. The Canary Party/Health Freedom team is led by the same people who funded large donations to Oversight & Government Reform Committee Chair Daryl Issa ($40k plus). JB Handley is not as vocal as he once was, but he founded Generation Rescue on the notion that “autism is just a misdiagnosis for mercury poisoning“. Sky Horse publishing is boutique publisher of many of the books on vaccines and autism, including “Age of Autism” and books by Andrew Wakefield. Barry Segal (Focus Autism) has been a large supporter of groups like Generation Rescue, the Age of Autism, SafeMinds and is very vocal on his belief that vaccines cause not only autism, but many other health problems as well. Gary Kompothecras has been funding Mr. Posey for years and is an autism parent and benefactor of groups promoting the vaccine/autism idea.

Without Autism Speaks’ name added to this, this would be very clearly all about a small but wealthy group of people pushing the failed ideas of vaccines and autism. People with failed and damaging ideas have the right to lobby members of congress along with everyone else. I, for one, am glad that the vast majority of Congress has moved on from the vaccine/autism-epidemic idea. I look forward to the day when that majority reaches 100%.


By Matt Carey

More Canary Party financial documents

2 Mar

The Canary Party grew out of the “vaccines caused an autism epidemic” movement. It’s a small group based in Minnesota. They bill themselves as:

The Canary Party is a movement created to stand up for the victims of medical injury, environmental toxins and industrial foods by restoring balance to our free and civil society and empowering consumers to make health and nutrition decisions that promote wellness.

Last July I wrote about their financial documents in Financial documents for the Canary Party. In that article I made the incorrect statement: “The Canary Party is not a charity, so they do not file form 990′s with the IRS.”

It turns out that they do file form 990. I can’t find them on Guidestar (perhaps because they are new?), but I found this one online. It’s for 2011, when the party formed.

When I wrote last July about the Canary Party, I noted that the financial statements on the Minnesota State Websites indicated that in their founding year (2011) they were largely funded by donations from Canary Party members/officers/founders Jennifer Larson ($40,665) and Mark Blaxill ($15,000).

The form 990 linked to above was an amended form, filed in July of 2013. Coincidentally, filed 10 days after my article about their financials. Per that amended IRS tax form for 2011, those amounts were not donations but loans.

The description of the organization’s mission is given as:

The time has come for a change. The mounting crisis in the health of children and other vulnerable groups has not only been ignored by medical authorities, it has been suppressed. As parents, citizens and advocates for the health of future generations, we must rise up to call attention to this crisis and take action to end it. In nominally democratic societies, which sadly are increasingly corrupted by the power of entrenched interests and economy of influence that surrounds the medical industrial complex, we can most effectively effect change by mobilizing for political action in order to take action against these corrupt forces. It is time to come together to form the Canary Party.

There’s another description as well, but you get the point. It’s a bit much, in my view, but not really out of line with their statements since.

At the time I wrote my previous article, it looked like the revenue to the Canary Party was decreasing. I wrote, “The Canary Party pulled in $72,000 in 2011 and $49,000 in 2012.” (at the time I didn’t know that a large part of the 2011 cash might be from loans). I noted that in 2012 a large fraction of their revenue came from a single donor, one Barry Segal, who apparently has since become disaffected with the Canary Party. I noted:

Per another comment posted to Respectful Insolence, the association between the Canary Party and Mr. Barry Segal appears to be strained. As Mr. Segal accounted for $30,000 of the party’s $49,000 revenue in 2012, one does wonder what 2013 revenue will look like.

Well, from the State of Minnesota site, here is the 2013 financial report on the Canary Party.

The Canary Party took in $17,245 in 2013. Of that, $15,000 was from Mr. Segal on January 2nd. The Canary Party started the year with $15,562.14 and, after $32,300.02 in expenses, ended the year with $687.12 in the bank.

To recap revenue in the last three years:

2011: $72,000 (of which $55,665 may have been in the form of loans)
2012: $49,000
2013: $17,245

Year-end assets

2011: $9,259.07
2012: $15,694.19
2013: $687.12

In other words: revenues and assets are way down. One does wonder how long the Canary Party will last, given these trends.

I find redefining the initial donations as loans to be very interesting. I don’t see evidence that the Canary Party paid back any portion of the loans in 2013. And, given their financial status, I don’t see the possibility of paying back the loans as highly likely. I do have a speculation as to why they might redefine the donations as loans, but I’ll hold off on that for now.

edit to add: here’s the part of the form 990 where they state that they are correcting the original to classify the contributions from the board members as loans.

CP Form 990


By Matt Carey

Mark Blaxill on the Geiers: they do sloppy work

13 Oct

Mark Geier and, more recently, his son David have been active promoting autism as vaccine injury for over 10 years (Mark Geier has been active as an expert in, and been criticized for his lack of quality work, the vaccine court on non-autism issues for about 20 years). They have written multiple papers, ranging from bad to worse, attempting to argue the case that vaccines (and especially thimerosal) are a primary cause of autism.

There are multiple discussions over the years of the Geiers here on Left Brain/Right Brain, Respectful Insolence as well as many other places. The best work was done by Kathleen Seidel at Neurodiversity.com, but due to a server crash much of that content is not readily available. (although it is worth searching for the cached versions or the versions on the Wayback Machine).

The work of the Geiers is so poor that it has always been a wonder to me that no criticism has come from anyone promoting the idea that vaccines caused an epidemic of autism. It isn’t that those promoting the vaccine-epidemic idea are not bright, leaving me wondering if they are too biased by their beliefs or just unwilling to speak publicly against an ally. But, recall, these are the same people who closed ranks around Andrew Wakefield in the face of clear and proved ethical violations.

If we are to believe Jake Crosby, former writer for the Age of Autism blog, it appears that the tacit approval of the Geiers has, at least in part, been a case of “circle the wagons”. I.e. people defending an ally over speak their opinions. Mr. Crosby has blaxillwilliams and quotes more emails where Mark Blaxill (former board member of SafeMinds and a long-time proponent of the idea that mercury in vaccines are a primary cause of autism) expresses his views about the Geiers to Mike Williams (attorney involved representing the families in the Omnibus Autism Proceeding).

In an email image on Mr. Crosby’s blog, Mr. Blaxill is reported to have stated:

In the interest of full disclosure. I thought you might like to see my critique of the Geiers’ latest work on VSD. I have not been a big fan of the Geiers. I worry they do not represent our side well. They do sloppy work.

In another email (quoted by Mr. Crosby, the link to the original is nonfunctioning) quotes Mr. Blaxill as stating:

“As to the Geiers, I may be a bit of a minority voice here, but I worry very much that they can do our cause more harm than good. They are not very good scientists, write bad papers (both writing badly and reporting in sloppy fashion) and attract too much attention to themselves as individuals. In this last regard, they don’t show nearly as well as Andy Wakefield but they’re trying to play the same role. Frankly, if I were on the other side and were asked to critique their work, I could rip it to shreds. I’m surprised they haven’t been hit harder. So I think you are wise to diversify.”

Mr. Crosby’s stance is that this constitutes “interference” in the Omnibus Autism Proceeding. I.e. Mr. Crosby seems to imply that the Geiers are not sloppy scientists whose work is poor, but that the Geiers should have been allowed a more active role in the Omnibus.

In this case I find myself agreeing, in part at least, with Mr. Blaxill. The work by the Geiers is poor. Where I don’t agree is Mr. Blaxill’s decision to hold back on making those statement public. Not just because it’s hard to take the stance that one is a only “…interested in the quest for the truth” when one holds back on key information like an entire critique of the Geiers’ VSD paper. No. It goes deeper than that. The Geiers’ junk science went beyond promotion of the idea that thimerosal is a primary cause of autism. The Geiers ran a clinic for many years. Mark Geier was a licensed physician, David Geier worked in the clinic (and has been accused of practicing medicine without a license). Through their papers and their talks at autism parent conventions like AutismOne, the Geiers became well known. One of the “brand name” autism clinics. They reached this level of respect within their community because no one within that community dared to speak out.

I’ve noted on Left Brain/Right Brain many times before that these parent conventions differ markedly from real science conferences in that no one ever seriously challenges the speakers. They can present almost any theory or idea, especially if they tie it to autism as vaccine injury, without anyone standing up and saying, “that makes zero sense”. These aren’t science presentations, they are advertisements. It would be interesting to see how many of these conventions Mr. Blaxill attended and yet remained silent on the “sloppy” work that could be “ripp[ed] to shreds” that the Geiers presented. Instead, parents were presented a view that the Geiers were good scientists who suffered unjust criticism for their “brave” stance on vaccines.

The Geiers were promoters of chelation as a treatment for autism. Not only does chelation have no scientific basis to be an autism treatment, a study just out this week using rodents states that chelation could be harmful if there is no real heavy metal toxicity:

Finally, we also found that succimer treatment produced lasting adverse neurobehavioral effects when administered to non-lead-exposed rodents, highlighting the potential risks of administering succimer or other metal-chelating agents to children who do not have elevated tissue lead levels. It is of significant concern that this type of therapy has been advocated for treating autism.

It is highly likely that Mr. Blaxill would disagree with the statement that chelation has no good scientific basis as a treatment for autism. He’d be wrong, but that’s been covered over and over before. The Geiers moved on from standard chelation to stranger, more dangerous therapies. As an aside, if chelation was a successful treatment one has to wonder why the Geiers were prompted to move on to using Lupron as an autism treatment. Lupron is very serious medicine and it shuts down sex hormone production in the body. Why Lupron, one might ask? The Geiers convinced themselves (or convinced themselves that they could pass off this explanation) that mercury bound itself to testosterone in the brain, making it hard to chelate. They cited a paper showing that if one heats testosterone and mercury salts in benzene, one could form these mercury/testosterone complexes. They actually claim (yes, they tried to patent this idea to make money off it) that this paper shows that “It is known in the art that mercuric chloride binds arid forms a complex with testosterone in subjects”. The “subjects” are beakers of benzene, not animals and not people. Add to that the lack of an explanation of how shutting down hormone production would break up these complexes. The Geier “science” supporting Lupron would be laughably bad if it wasn’t used to subject disabled children to Lupron injections.

Lupron clearly has no basis as an autism therapy. In fact, the “lupron protocol” played a major part in Mark Geier losing his medical licenses. One has to ask, how did the get such traction for such an obviously bad idea? For one thing, the Geiers were considered respected scientists in the vaccine injury/alternative medicine autism community due to their previous and ongoing work trying to link thimerosal and autism. Work which Mark Blaxill considered “sloppy” and worthy of being ripped to shreds. But instead of sharing his views on the Geier papers with the public, Mr. Blaxill shared them privately within his own circle.

It’s worth noting that the email quoted above was written before the “Lupron Protocol” was developed. We don’t know if Mr. Blaxill was alarmed by the emergence of the “Lupron Protocol”. I can’t find where he spoke out against it. We can see that his blog (under a different writer) promoted the idea as “MERCURY, TESTOSTERONE AND AUTISM – A REALLY BIG IDEA!“. Mr. Blaxill doesn’t seem to have commented there. For all the papers the Geiers have published, Mr. Blaxill only mentions them once in his book “Age of Autism. But as we’ve seen, tacit approval (silence) may not be the same thing as real approval.

Mr. Blaxill had the courage to testify before a congressional hearing last year. A hearing where the politicians had been lobbied in advance to be favorable to his cause. When it came to disagreeing with one of his allies, that courage was lacking. He allowed “sloppy” science from an ally to go unchallenged. An example of the fallout of such a decision, in my opinion had he stood up he could have slowed or even stopped the “Lupron Protocol”, a therapy which in my opinion amounts to the abusive treatment of disabled children in an uncontrolled and unapproved experiment.


By Matt Carey

No, the thimerosal in the flu vaccine does not explain why autism rates did not go down

6 Oct

Surprisingly enough, there are still people promoting the idea that the rise in autism diagnoses observed over the last decades was caused by thimerosal in vaccines. The original argument was this–vaccines were added to the vaccine schedule in the 1990’s and with them the infant exposure to thimerosal increased. Concurrent with this rise in infant thimerosal exposure was a rise in autism diagnoses. Add to this a poorly concocted argument that autism resembles mercury intoxication and you have the basis for the mercury hypothesis.

Thimerosal was phased out of infant vaccines over 10 years ago. Thus, if the thimerosal hypothesis were true, reported autism rates should be declining by now. As far back as 2005 David Kirby (whose book “Evidence of Harm” played a major role in promoting the mercury hypothesis) acknowledged this point in a statement

If the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis.

It’s 2013. Autism rates in California have not declined. Not in Special Education. Not in the CDDS roles. And, yes, we are six years past the 2007 deadline that David Kirby gave us.

To be specific, let’s use the same method that David Kirby and others used to claim a thimerosal induced autism epidemic in the 1990’s (namely the California DDS client count–which not a good method, by the way). Autism “rates” have gone up by over 150% since thimerosal was phased out of infant vaccines. The age 3-5 bracket had about 4000 children in 2003 and is currently over 10,000.

CDDS 3-5

So we have more kids in California receiving services under the autism label than when thimerosal was in vaccines.

This is but one in a huge list of reasons why the thimerosal hypothesis doesn’t work.

But let’s go back in time a bit. Not so long ago one would hear proposals that we go back to the vaccine schedule of the early 1980’s when, it is claimed, the autism rate was 1 in 10,000. Fewer vaccines, less thimerosal, less autism. So goes the logic.

Generation Rescue, in fact, used to recommend the 1983 schedule as one of their alternative schedules

Turn back the clock
Comment: This is the schedule from 1983. If it worked for kids then, why doesn’t it work for kids now?”

Does it make sense to go back to the 1983 schedule? No. Why? OK a lot of reasons, but let’s focus on the fact that infants were exposed to more thimerosal in the 1980’s than today. Infant vaccines have no or only trace amounts of thimerosal.  So if thimerosal were the (or even a single) primary cause of autism risk, we would see autism rates lower today. To not only 1990’s levels, but to something like 1980’s reported levels. Assuming that the reported rates in the 1980’s were an accurate count of how many autistics there were then (a bad assumption but it’s the one they use).

To recap–Infant thimerosal exposure from vaccines peaked at nearly 200 micrograms in the 1990’s, up from about 100 micrograms in the 1980’s and is now less than 10 micrograms. And autism rates have not declined at all. Much less to 1980’s levels.

Once anyone says this the instant answer is that there is still thimerosal in some influenza vaccines. This, they say, is why autism rates have not declined. (note that thimerosal containing vaccines, including influenza vaccines, are banned in California for infants and pregnant women…and autism “rates” have continued to climb here).  

For completeness sake, let’s consider a kid who gets the maximum exposure to thimerosal from vaccines. I.e. a non California kid.  A kid who turns 6 months (the earliest age they will give a flu vaccine to a kid) during the flu season.  That kid will get 2 vaccines in the first year (6 and 7 months) then another influenza vaccine each year thereafter. Each with 25 micrograms of mercury from thimerosal. How does the thimerosal exposure compare to the 1983 schedule?  Take a look for yourself (exposures in micrograms of mercury from thimerosal):

1983 schedule 2013 schedule
DPT Inluenza
2 months 25
4 months 25
6 months 25 25
7 months 25
Total by 1 year 75 50
18 months 25 25
Total by 2 years 100 75
30 Months 25
Total by 3 years 100 100

So by age 3, the exposures are the same.  Except that the kid of today gets the thimerosal later and more spread out over time.  As an aside–most people who talk about the rise in thimerosal exposure during the 1990’s neglect to point out that the cumulative exposure in the 1980’s was already 100 micrograms. I.e. the “safe” level was significant.

If thimerosal were the driving force behind the rise in autism diagnoses, we should be back to 1983 levels, misrepresented by those claiming an epidemic as 1 in 10,000.  Instead we are at 1-2%.  The “rates” didn’t go down.

By this point the proponents of thimerosal are basically screaming, “you are forgetting the vaccines recommended to pregnant women!” No, I just put that off until now.  Sure, the influenza vaccine is recommended for pregnant women, but as the CDC notes:

Prior to 2009, influenza vaccination levels among pregnant women were generally low (~15%) (5,9).

So, from about 2000 to 2009 there wasn’t a big increase (or even a large part of the population) getting influenza vaccines while pregnant, nor were their children getting exposures higher than those in the 1983 schedule.

Take a look at that graph for California administrative autism prevalence again. Between 2002 (after the drawdown of thimerosal in vaccines) and 2012 the autism count doubled. Thimerosal exposure was down. A lot. Below 1990’s “epidemic” levels. Back to the 1983 “worked for kids then” levels. But autism “rates” continue to climb.

The people still pushing the idea that thimerosal is a (or even the) primary cause of autism are not unintelligent. We are talking about college educated people. Ivy league schools. A former journalist, an intellectual property expert and more. There is no math above. It’s all quite simple and straightforward. It uses the exact same logic and methodology they used to promote the idea that mercury causes autism. This is where intellectual honesty and basic integrity should kick in and get people to suck it up, admit their mistakes and start repairing the harm they have caused.

I’m not holding my breath.

By Matt Carey

No, the autism “rate” in California did not go down after removing thimerosal from vaccines

26 Feb

I recently attended a talk where the speaker showed autism prevalence by age group for a large HMO in California. The administrative prevalence (fraction of people in the HMO identified autistic) was still going up as of 2010, and the speaker indicated this trend continued to 2012. California is an interesting case study because not only was thimerosal removed from vaccines along with the rest of the U.S. starting in the late 1990’s, but the state enacted a law which required that pregnant women and children under three be given thimerosal free vaccines from 2006 onward. So, with the exception of an an exemption in 2009 and another one right now, even the influenza vaccine in thimerosal free. I bring this up because it is a common argument that somehow the exposure from the flu vaccine is keeping the rate climbing, even though at most this is a lower exposure than that from the 1990’s pediatric vaccine schedule.

This all said, the talk made me dive back into looking at autism prevalence. I decided to finally write about the fact that the autism prevalence in Denmark is higher post thimerosal than while thimerosal containing vaccines were in use. This is completely unsurprising, but a myth has been propogating that it came down and that fact was being hidden.

As it turns out I also checked back with what once was the most common source of autism data for the armchair epidemiologist: the California Department of Developmental Services (CDDS). (I admit one could argue that Special Education data are the most common source for the armchair epidemiologist). The CDDS provides services to disabled Californians and keeps and makes public statistics on their client base. For a long time, every quarter they would come out with a report. For a long time, every quarter these reports would be followed by announcements about how the data showed that vaccines cause autism. One of the people you could always count on was David Kirby (author of the book, Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy, and basically a PR man for some of the vaccine-causation groups). Mr. Kirby went so far as to claim that these data were the “gold standard of autism epidemiology”. Well, the data had their uses (such as identifying and quantifying some of the social influences behind the increase) but it is not an easy task to get results from them. The idea that they represent an accurate count of all those with ASD’s (or even accurately account for all individuals with autistic disorder) is a stretch.

But this didn’t stop David Kirby. Back in 2005, David Kirby was claiming that there was an indication that the administrative prevalence in California was starting to drop, and if the trend continued this was a sign that the removal of thimerosal was having an effect:

Stay tuned. If the numbers in California and elsewhere continue to drop – and that still is a big if — the implication of thimerosal in the autism epidemic will be practically undeniable.

Well, by 2007 it was clear that the California data were not really showing a drop. In addition, the lack of a drop was published in 2008 as Continuing increases in autism reported to California’s developmental services system: mercury in retrograde.\

The rise in the number of autism clients in the CDDS database was key to the idea of the mercury-induced epidemic. David Kirby (and others) relied on these data and Mr. Kirby even acknowledged that the data should start showing a drop (statement from 2005):

If the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis.

The reason is that 5 year olds in 2007 were born after the removal of thimerosal from vaccines. Their exposure to thimerosal was much less than kids in the 1990’s. If the “thimerosal caused an autism epidemic” idea were true, the rates would have to drop. They should drop back to pre-1990 (actually pre 1980) levels if thimerosal were the main, or even a main, cause of the rise.

My recollection is that Mr. Kirby did later backpedal and claim that we would have to wait until some much later date, but it was a weak argument (even by David Kirby standards).

Sorry to keep diving into past history, but one of the strangest moments in the mecury debate (and I can use the term this time, because there was a debate) came in San Diego in 2007. David Kirby debated Arthur Allen in the UCSD Price Center (about 100 yards from my old office, as it turns out). Presented with the fact that even though thimerosal exposure from vaccines had gone down, the California numbers kept going up, David Kirby presented (in something like 100 power point slides!) a four pronged response. First was a claim that California HMO’s had stockpiled thimerosal containing vaccines, so the exposure from vaccines didn’t really go down as much as reports were claiming. Then:

1) A gigantic plume of coal smoke from Chinese power plants has settled on California, depositing lots of mercury and therefore causing the autism numbers in the state to continue to grow.

2) Bad forest fires have put tons of mercury into the air, depositing lots of mercury etc…

3) Cremations (!). The burning of dead bodies with mercury amalgam in their mouths has added even more mercury to the air.

It was a hail Mary pass, to be blunt. Lot’s of handwaving and ignoring the facts.

In 2007, the CDDS changed the way they assessed and counted their clients and they stopped publishing the quarterly reports. As you can imagine, many claimed this was part of a conspiracy to hide the fact that the autism rates were declining in California. And with that the quarterly ritual of misinterpreting and deconstrucing the data came to an end.

All amusing history, sure, but one might ask, why bring all this up again? Well, because it turns out that the CDDS started putting out quarterly reports again in 2011. Yes, there’s a gap of a few years in the data. Yes, some things changed (for example, the CDDS now shows the PDD fraction of autism client base). Given these limitations–and the other limitations in the CDDS data (i.e. they are *not* the “gold standard” of autism epidemiology), what do these data show? The upward trends continue. More individuals served by the CDDS with autism, even though thimerosal was removed from vaccines. Here’s the total–all ages–count for CDDS clients in the autism category (click to enlarge):

CDDS total

Looking at the younger age groups, those whose exposure to thimerosal is much lower than for kids born in the 1990s, there is also an increase. Here is the age 3-5 age group (click to enlarge)

CDDS 3-5

and the 6-9 age group (click to enlarge):

CDDS 6-9

9 year olds in 2012 were born in 2003. Post the removal of thimerosal nationwide. 5 year olds were born in 2007, post thimerosal nationwide and post the California law prohibiting mercury in vaccines for pregnant women and small children. In both groups, the CDDS autism counts are higher than they were in 2002 (the earliest date in the currently available data). Which, in turn, was much higher than the counts from the 1990’s. Here is a figure from the Schechter-Grether paper refenced above:

S-G CDDS paper figure

Which is all a very long way of saying: years ago the evidence was against the thimerosal/epidemic idea; it is even more clear now. For years we heard Mr. Kirby and others talk about how those responsible should step up and admit what happened. Well, the fact is they did. Now it is time for those who promoted the mercury notion to step forward and show they have the guts to admit they were wrong. Because they were. Clearly wrong. It would take a lot of guts to step forward and admit the mistakes. Even though their influence has waned, it would help the autism communities. While I have focused on David Kirby in this discussion, the list is much longer of people who should step forward. I’m not going to hold my breath.


By Matt Carey

Witnesses for Congressional hearing on autism announced

28 Nov

Thursday the US House Committee on Oversight & Government Reform will hold a hearing on autism: 1 in 88 Children: A Look Into the Federal Response to Rising Rates of Autism.

The witness list has been made public on the committee’s website:

Alan Guttmacher, M.D.
Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development
National Institutes of Health

Coleen Boyle, Ph.D.
Director of the National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention

Mr. Bob Wright
Co-Founder
Autism Speaks

Mr. Scott Badesch
President
Autism Society

Mr. Mark Blaxill
Board Members
SafeMinds

Mr. Bradley McGarry
Coordinator of the Asperger Initiative at Mercyhurst
Mercyhurst University

Mr. Michael John Carley
Executive Director
Global & Regional Asperger Syndrome Partnership

Mr. Ari Ne’eman
President
Autistic Self Advocacy Network

Reconsidering the Nature of Autism

8 Apr

Todd Drezner has a new piece up on the Huffington Post: Reconsidering the Nature of Autism. He starts out by quoting the forward to one of Jenny McCarthy’s books. The forward is by alternative medical practitioner Jerry Kartzinel.

Here is what Mr. Drezner wrote in his introduction:

“Autism … steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the family members, one by one.” So wrote Dr. Jerry Kartzinel in the introduction to Jenny McCarthy’s bestselling “Louder Than Words.” No wonder, then, that the concept of neurodiversity– the idea that we should understand and accept autistic people as a group that thinks differently from the majority — has proven to be so controversial.

The quote takes me back. Back to when I was starting to look online for information about autism. I remember when Jenny McCarthy hit the scene. Kev responded here with his blogging. The blog might have been kevleitch.co.uk then, not LeftBrainRightBrain. I remember that Kev’s blog went down: the traffic was so high that he hit his bandwidth quota. I remember that he responded to the forward from Jerry Kartzinel. He responded with words and, a little later, with video:

I don’t bring this up just for some sort of nostalgia. But this reminds me of two major themes. First: words hurt. What Dr. Kartzinel wrote, and Jenny McCarthy published, hurt. It hurt a lot of people. It added to the stigma of autism and disability. Second: words can be powerful. Kev fought back, as did many others. How or if this was an influence on Todd Drezner, I can’t say. It influenced me as I still remember it.

We can’t sit back and let people stigmatize others, for whatever reason they may have. Kim Wombles shows that almost every day with her blog Countering. Bev did it with a humor and keen perspective on Asperger Square 8. Corina Becker is taking up the task with No Stereotypes Here. And this is just a few of the many voices, autistic and non, out there.

Having said this, I will bring up one message that I’ve felt needed to be countered for some time. Here is a screenshot of a page from the book “the Age of Autism” by Dan Olmsted and Mark Blaxill. Both write for the Age of Autism Blog (Dan Olmsted appears to be the proprietor). Mark Blaxill is a member of the organization SafeMinds. Both promote the idea of autism as vaccine injury and, more specifically, the failed mercury hypothesis. (click to enlarge)

To pull but one disturbing quote: “As one of the first parents to observe an autistic child, Muncie learned how well autism targets ‘those functions distinctly human’ “. Yes, I have spent quite a lot of time fighting bad science like the first part in that sentence: the idea that autism is new/the kids in Kanner’s study were the first autistics ever. But what about the second part: that autistics are missing or have impaired “distinctly human” functions? Yes, I’ve also responded to that sentiment in the past and I plan to continue to do so. And that is much more important than the fight against bad science.

Words hurt. Jerry Kartzinel’s words hurt. Dan Olmsted and Mark Blaxill’s words hurt. They hurt and they are wrong. Plain and simple.

Another phrase from the above paragraph: “autism brutally restricts the interests of the affected”. So say the team that has one interest: pushing mercury in vaccines as a cause of autism. A little ironic?

Reading their writing, I am reminded of one of Bev’s amazing videos:

Back to the paragraph from “The Age of Autism”. Dan, Mark: You don’t think autistics made tools, explored the globe, invented new technologies? The sad thing is, it seems like you don’t.

Yeah, a lot of kids, kids like mine, aren’t in the world explorer/inventor categories. And even kids like mine are still as human as you or I. They are not missing anything “distinctly human”.

Book Sales: The Age of Autism and Callous Disregard

15 Dec

I tapped my source one last time for book sales figures for “The Age of Autism” and “Callous Disregard”. The Age of Autism was written by Mark Blaxill (board member of SafeMinds and one of the three principle editors of the blog, Age of Autism) and Dan Olmsted (former UPI editor, principle editor and, from what I can tell, owner of the Age of Autism blog). Callous Disregard is Andrew Wakefield’s account of the events which landed him before the General Medical Council and resulted in him being removed from the UK medical register.

Total book sales to date:

Age of Autism: 2301
Callous Disregard: 2925

Last week five copies of Callous Disregard were sold.

Last week The Age of Autism sold 130 copies–38 in Minneapolis St. Paul and 35 in Norfolk, Virginia. This appears to coincide with book signing events in those locations. The week before that, The Age of Autism sold 57 copies.

These figures must be disappointing. If not to the authors, to the publishers.

I may post an update with this week’s book sales. Either way, there isn’t much reason to continue the discussion of these books. When they are available in the remainder book outlets (with this few sales, there won’t be a lot of used copies and little chance for paperback editions) I will likely obtain copies of each. I’ve already read them, but they are interesting from a historical perspective. It will be a good exercise to see how these books read ten years from now. If history is kind to these authors, it will be by neglecting them.