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Legal Bombshell in Autism Omnibus Proceeding!

17 Jul

This is a Guest Blogged piece, written by a beloved legal expert – Clem Heckenberry.

In what can only be described as a legal bombshell, the Petitioners in the Autism Omnibus hearings seemingly withdrew four of its highest profile experts to support the various claims that say that vaccines cause autism. The experts are James B Adams, Mark Robin Geier, Boyd E Haley and Andrew J Wakefield. The ‘New’ experts are those we recognise from the testimony offered thus far. Indeed, this reporter can find no further mention of Adams, Geier, Haley or Wakefield as expert witnesses for the petitioners.

If this case was in the civil arena, the withdrawal of four experts of such magnitude would in all likelihood result in sanctions, a directed verdict or the total failure of the case as in the time Jeff Bradstreet (another expert for the petitioners) left his clients high and dry. There’s no way to spin this as a positive development for the petitioners.

Drs. Adams, Geier, Haley and Wakefield were apparently unwilling or unable to testify about the substance of their beliefs and ‘science, leaving only the report and testimony of Dr. Asphosian, a scientist who has not devoted significant time to the question of mercury and autism. (At one point in his career it’s alleged that Dr. Asphosian claimed that the argument that ‘the dose makes the poison’ was wrong.)

I spoke with various people about this development and they also agreed that this was knocking out some of the petitioners strongest pillars that autism is related to thimerosal or MMR. All those I talked to considered it difficult to underestimate the near-hilarious reputation of these four experts in the field of autism. Their apparent unwillingness to testify on these matters suggests they cannot sustain their previous assertion that thimerosal or MMR has anything to do with autism.

Although the parties are continuing to submit motions and it appears unlikely that there will be a decision this summer, the withdrawal of these experts are likely to have profound consequences.

UPDATE: There’s a good chance this might be satire, although the facts are true..

Amanda Peet and the Streisand Effect

16 Jul

I had never heard of the “Streisand Effect” until a few months ago. That’s when Clifford Shoemaker subpoenaed.

The basic idea is simple: someone tries to censor or remove some piece of information from the internet, and, instead, the actions cause the information to be much more widely spread than it would have been otherwise.

In the case of the subpoena, many (MANY) people heard about the neurodiversity.com site and, especially, some of the actions of Mr. Shoemaker, than would have happened had the subpoena not been issued.

I was reminded of this phenomenon today when I found that the Amanda Peet story has started to catch on big. Amanda Peet was quoted in Cookie Magazine with a very pro-vaccine stance. She had been scared by…

….the amount of misinformation floating around, particularly in Hollywood

So, what did she do? She asked a medical professional for advice. Dang, what a concept! She was very fortunate that her brother in law is a doctor and, even more luckily, he works at Children’s Hospital of Philadelphia (CHOP) where Paul Offit works.

Dr. Offit knows vaccines. Not in the, “I’ve read a ton in the internet” version of “knows” vaccines. No, He researches and develops vaccines. He is also a vocal spokesperson against the idea that vaccines cause autism. That, as you can imagine, makes him very unpopular with some segments of the autism community.

So, you can imagine what happened when Amanda Peet came out pro vaccine, against the vaccine-autism connection and stated that she got information from Dr. Offit. Yes, she got the usual hate-filled reception. And make no mistake, I am not downplaying that. I would not be surprised if she, like others before her, have had to forward emails or phone calls to the authorities because they seem threatening.

But, as time goes on, the message isn’t getting quashed. Salon.com picked up the story today and stated,

Now, Peet vs. McCarthy is the celebrity smackdown du jour. Sure, we’d all be better off taking our medical advice from doctors and nurses rather than celebrities. Yet, everyone from the American Academy of Pediatrics to Salon columnist Dr. Rahul Parikh has tried to reassure parents that vaccines don’t cause autism. Meanwhile, public health officials worry when public confidence in vaccinations continues to erode, in part because of high-profile celebrity advocacy, like McCarthy’s Green Our Vaccines march and rally held in Washington, D.C., in June.

And, what was that “smackdown du jour”? Looks like E! picked up the story as well.

All these web stories give the usual crowd an opportunity to add comments. The forums and comment sections for those stories are filled with people trashing Amanda Peet. I wish those people would catch a clue–have someone outside the autism community read what they write. The comments are strident, rude and, in general, really make the autism community as a whole look bad. It’s one thing to rant away in a closed yahoo group or in the comment section of the Age of Autism blog, but the public doesn’t know (and I wish they didn’t) just how mean and nasty these “advocacy” groups can be.

This story isn’t going away. Amanda Peet is now a spokesperson for Every Child By Two, a pro-vaccine organization founded by former first lady Rosalynn Carter. (as an aside–the Carters are one of the best ex-first-families the U.S. has seen).

Now that Amanda Peet has come down against the idea that vaccines cause autism, pretty much everything she says will be picked apart and analyzed. One comment that is giving a lot of ammunition to her detractors is this: “Frankly, I feel that parents who don’t vaccinate their children are parasites.”

Read the comments and how many people try to make it sound like Amanda Peet is calling autism parents “parasites”. (Hint, she didn’t).

Let’s take a quick look at that term, parasite.

a person who receives support, advantage, or the like, from another or others without giving any useful or proper return, as one who lives on the hospitality of others.

Now, let’s take a look at what Dr. Sears, one of the people often quoted by vaccine rejectionists, has to say about the MMR vaccine:

“I also warn them not to share their fears with other neighbors, because if too many people avoid the MMR, we’ll likely see the diseases increase significantly.”

So, he appears to this reader to be telling parents who don’t give the MMR vaccination to their children to keep mum, or the herd immunity will be compromised and the advantage to those parents will be lost.

Sweet. That doesn’t sound like “receiving advantage” without giving anything useful in return, does it?

Don’t get me wrong. For people with real reasons to avoid some or all vaccines (one regular commenter on this blog comes to mind). But, “I am scared of MMR causing autism so I am not going to vaccinate my kid, but I’ll hide in the herd immunity” doesn’t sit very well.

Also, where is the compassion for those who really need the protection of herd immunity? Where is the “Consider that your neighbor’s kids could use the advantage of your child’s immunity”?

But, to bring this back to where we started: Amanda Peet has hit the scene. She has jumped in with both feet, and appears to be staying for a while. A lot of voices appear to be trying to shout her down. Instead, they just seem to be giving Amada Peet’s message more coverage.

Age of Autism still don't get it

15 Jul

Over on our favourite pompous blog, the authors and readers still seem to have trouble processing their collective importance to autism related science (none at all) as well as how successful politicians are at directing science (not at all).

They flourish a letter from the Chairman of the Subcommittee on Investigations and Oversight of the House Science and Technology Committee (long enough name fellers?) which is itself breathtaking in its dumbness.

In the Combating Autism Act, Congress directed DHHS to conduct research into screening, diagnosis, treatment and medical care for individuals with autism. These areas of research are essential to a balanced approach. In addition to these areas, I strongly encourage the IACC to promote a balanced research portfolio when examining the underlying causes of Autism Spectrum Disorder (ASD). An examination of the FY07 ASD Research Portfolio shows a strong preference to fund genetic-based studies related to autism. There is growing evidence that suggests a wide range of conditions or environmental exposures may play a role in the emergence of ASD.

So, they firstly admit the role of CAA did not ask DHHS to examine the causes of autism but then ask the IACC (a committee appointed as a result of the CAA) to do it anyway. They then tick the IACC off for having a preference for genetic based studies and say there’s growing evidence that a ‘wide range’ of things cause autism. Possibly thats true, but the reference they provide to support that statement belies their beliefs. They reference the recent IMFAR poster presentation of Laura Hewitson. A study that has not even been published. This _is_ a science committee right?

They then go on to repeat a number of anti-vaccinationist talking points (Hannah Poling, biomedical treatment etc etc) and then make their recommendation:

I urge you to consider forming a Secretarial-level Autism Advisory Board (AAB). While the IACC is the primary mechanism for the coordination of research, surveillance, and early detection activities within the Department of Health and Human Services, an AAB could provide additional public feedback and serve as a liaison between parents, individuals with ASD, advocacy groups and the Department of Health and Human Services, and would assist in reestablishing public confidence

and whom might be on such a board I wonder?

Groups such as SafeMinds, Generation Rescue, Autism Speaks, the Simons Institute, the National Autism Alliance, and the Autism Research Institute all have or are currently supporting research. Such groups have experience evaluating research, an in-depth knowledge of the current body of ASD research, and an appreciation of the new questions that may need to be examined in order to move our understanding of ASD forward.

This is a bad joke, surely. What is driving this is the fact that some IACC members are annoyed that the IACC didn’t immediately capitulate to their demands to study vaccines and vaccines only. There was a good reason why they didn’t. Its already been done. No association. Move on.

I have to say the idea of SafeMinds and Generation Rescue being on a board that is to restore public confidence to “parents [and] individuals with ASD” amuses and scares me in equal part. Maybe Mr Miller hasn’t seen founding members of Generation Rescue calling autistic people ‘trailor dwelling coo-coos’ or founder members of SafeMinds referring to blogs authored by autistic people and parents of autistic people as part of a ‘Wackosphere’? I think once he has (and he will, as will Secretary Leavitt and Dr Insel) he might stop and think futher.

Anyway, I digress, back to AoA. They employ a clever bit of deviousness to try and lever vaccines into the CAA:

The CAA listed 13 scientific fields but the only specific research topic mentioned in the legislative history was vaccines and their preservations as a possible cause of autism.

Hey, why would they need to? The Omnibus Autism hearings are doing that right?

But read carefully. It looks on a quick pass like vaccines are mentioned in the CAA. But they aren’t. They are mentioned in the ‘legislative history’. What that means is that there is no mention of vaccines in the CAA (and there isn’t. Read for yourself.)

Another word that would equate with ‘legislative history’ is ‘rubbish’ meaning ‘that which has been thrown away’. AoA – or in this instance Kelli Anne Davis (apparently the DC Political Liaison for Generation Rescue) – will be using the phrase ‘legislative history’ to try and afford some weight to the idea of vaccines being in drafts of the CAA. I really doubt anyone is going to fall for that little sleight of hand Kelli Ann.

And here’s the kicker:

This letter is the result of a year-long, collaborative effort between Generation Rescue, SafeMinds and the Investigation and Oversight Subcommittee.

I’ll bet it is.

Just this week, yet more genetic evidence was uncovered into the aetiology of autism. Y’know, the kind of evidence AoA et al are saying is useless and there’s too much of.

Let this be a marking point. Let us all remember that this is the week that the political process was co-opted in order to achieve a useless goal. The results of that, if successful, will be even less research into what could be vital therapies, educational strategies, residential innovations and means of garnering respect for autistic people.

Small Omnibus updates

12 Jul

OK, I am watching this closely enough that I read the small updates.

This one discusses a number of small topics.

First, evidence and all arguments are now complete for the First Theory of Causation. This is the theory argued last year in the Cedillo, Hazelhurst and Snyder cases. The theory there was that thimerosal plus the MMR vaccine combine to cause autism.

There was some delay as the petitioner’s lawyers (PSC) attempted to get some documents from the UK. It appears that there was a low likelyhood of that ever happening, so the PSC dropped the request (ceased efforts in that regard).

What does this mean? It means the Special Masters (SM’s) have all the information that they are going to get. They have already spent a lot of time analyzing what they have, and they expect to make a “detailed written ruling as soon as possible”.

Second is an update on the Second Theory of Causation. That is the theory that thimerosal alone can cause autism. This was mostly a summary of the fact that two of the specific cases (King and Mead) have been heard this May and that the third specific case (Dwyer) will be heard later this month.

Third, is the, well, Third Theory of Causation. This is the theory that MMR alone causes autism. As near as I can see, this is in a bit of a limbo right now. The PSC was supposed to submit expert reports and prepare for specific cases in September. However, there have been motions stating that there is no new general causation evidence. The evidence would be the same as for the First Theory hearings held last year. The Special Masters appear to be still working on how to respond to those motions.


Another update was submitted recently. This is a strange one. There was discussion during the May hearings (on the thimerosal theory) that two more respondent (i.e. government side) expert witnesses would give general testimony (in person and/or by expert report) in the July hearing (Dwyer). Those were to be Dr.’s Clarkson and Magos. The PSC wanted to put Dr. Aposhian on to rebut their testimony. All well and good. Except that the Respondent’s decided to pull the expert reports by Dr.’s Clarkson and Magos. The PSC then said that they still wanted to put Dr. Aposhian on to rebut other testimony. Still following? Well, the SM’s said that since Dr. Aposhian was only on there to rebut the Dr.’s Clarkson and Magos, he couldn’t go on if they didn’t.

Now, I expect this to draw a lot of speculation. People will be claiming that for some reason the DoJ was afraid of what Aposhian had to say, to the point of scuttling their own witnesses. I expect this from the internet, because, well, that’s the sort of thing that happens here. But, there is this bit in the Omnibus update:

Mr. Powers then stated that the petitioners might wish to file a motion requesting that certain unspecified inferences be drawn from the respondent’s decision to withdraw the reports of Drs. Magos and Clarkson. As we noted during the conference, we will certainly consider any such motion

So, the PSC want to “draw inferences” from this action. As I said, I expect that from the internet. I was a little surprised to see it from the lawyers in this case. (I may surprise easily)

There is something of substance in this: general testimony for the Second Theory is over. No more expert witnesses talking about the general idea that thimerosal causes autism. There will be a few days of testimony about one more of the Petitioners (Dwyer), but it is supposed to center only on the details of his case.

(note: a few small edits were added about my surprise in the request for ‘inferences’)

AAP and Paul Offit under attack (again)

7 Jul

Over on the Age of Autism, a new post has appeared which goes after the AAP (I thought everyone over there was big friends with the AAP these days?), its representative Dr Renee Jenkins and the AAP in general.

They (AoA) appear concerned about the newly formed Immunization Alliance which is an alliance of groups interested in children’s health and threaten that the formation of this group will put the AAP

<blockquote>…..in the middle of the line of fire for parent activism.</blockquote>

We have to question, first and foremost, what this has to do with autism. The answer is of course nothing. But that fast becoming the way with AoA. They posted over 100 posts throughout June and about a third of them were explicitly about autism or touched on autism. There were a lot about the speaking engagements of David Kirby, a lot of posts about the green our vaccines rally, a lot of posts about Gardasil and a lot of anti-AAP etc posts.

You have taken your eyes off the ball guys. You’ve forgotten what this is supposed to be about.

Anyway, the post goes on to say that the AAP announcement is;

<blockquote>Breathtaking in its dismissiveness of parent concerns…</blockquote>

Here’s the article in full:

<blockquote>

Immunization Alliance to develop compelling messages for parents
Anne Hegland
Editor in Chief

With pediatricians facing an increasing number of parents who question the safety of vaccines, representatives from organizations with a shared interest in advancing children’s health met May 30 to compare notes and develop strategies to help recapture public trust in childhood immunizations.

The newly formed Immunization Alliance, representing 15 groups, agreed that together they must work on short-and long-term solutions before falling immunization rates lead to further outbreaks of once-common and sometimes deadly vaccine-preventable childhood diseases.

Fresh in everyone’s mind were the measles outbreaks in nine states earlier this year.

Framing the challenges

Paul Offit, M.D., FAAP, director of the Vaccine Education Center at Children’s Hospital of Philadelphia, identified some of the factors contributing to the increase in vaccine refusal and the need for quick action:

• parents who have never experienced or seen vaccine-preventable diseases;
• media and Internet reports that are unbalanced;
• decreased trust in the government and health care providers;
• an increasing number of states allowing philosophical exemptions; and
• parent-to-parent spread of misinformation.

Dr. Offit pointed out that the majority of vaccine refusals stem from parents’ fears, with only 10% of refusals associated with parents who strongly oppose vaccines.

“We need to work on public messaging around vaccines — the benefit of vaccines — and to have the right messenger delivering those messages,” said AAP President and meeting co-facilitator Renée R. Jenkins, M.D., FAAP.

Underscoring the need for compelling vaccine messages is the No. 1 ranked resolution from the 2008 Annual Leadership Forum, calling for the Academy to lead a coalition that will develop a media campaign on the value of immunizations that can be marketed to parents, added Dr. Jenkins.

The group agreed that communication strategies must appeal to parents who are Internet and media savvy, and go beyond presentation of the science by engaging consumers on an emotional level. There was acknowledgement among attendees that messages from anti-vaccine groups’ helped erode public confidence in immunizations through their use of celebrities to deliver heartrending first-hand accounts.

“The greatest challenge is getting these messages out in a timely fashion. We’ve got August coming up, which is a big month for kids going to the pediatrician for back-to-school visits and for immunizations,” said Dr. Jenkins.

At press time, Alliance members were prioritizing strategies to be shared with communication experts who will help craft messages promoting the value of immunizations.

Messages for pediatricians

Meeting co-facilitator Margaret Fisher, M.D., FAAP, chair of the AAP Section on Infectious Diseases, said the Alliance’s efforts also are an effort to help pediatricians in practice, whose messages have not always been understood by parents.

“We’re all about what’s best for children, and what we’re trying to do is find a way to re-establish our trust with the public. We want to help provide our members with the messages and the method that can regain that trust and make it easier for them on a day-to-day basis.

“The public has lost trust in medicine in general — not in their individual pediatricians,” Dr. Fisher added.

The Immunization Alliance meeting was supported by the Tomorrows Children Endowment of the AAP.

Immunization Alliance

The following groups are represented on the Immunization Alliance:
• American Academy of Family Physicians
• American Academy of Pediatrics
• American College of Obstetricians and Gynecologists
• American Medical Association
• American Public Health Association
• Association of State and Territorial Health Officials
• Easter Seals
• Every Child By Two
• Immunization Action Coalition
• March of Dimes Foundation
• National Foundation for Infectious Diseases
• National Vaccine Program
• Parents of Kids with Infectious Diseases (PKIDS)
• Rotary International
• Voices for Vaccines

</blockquote>

Now maybe its just me but I didn’t see anything there that could be described as ‘breathtaking in its dismissiveness of parent concerns’. In fact, I think the AoA need a little lesson on numbers. You are not the majority, you are not even close. You are however extremely effective at marketing needless fear. But _this_ parents concerns revolve more around the effects of _not_ vaccinating rather than actually vaccinating.

The post goes on to describe how:

<blockquote>The AAP believes the decline in immunization rates is due to “anti-vaccine groups” and “celebrities” as if Jenny and a few websites are the only problem. What they fail to realize is that the message of groups like Generation Rescue would fall flat if there weren’t tens of thousands of parents who agreed with it. 8,000 people don’t march on Washington because of Jenny McCarthy and a few websites, they march on Washington because they know what happened to their child. If parents weren’t hearing our message corroborated in their own communities, there wouldn’t be an impact.</blockquote>

The decline in immunization rates _is_ partly down to ‘anti vaccine groups’ and ‘celebrities’. You pretty much _are_ the only problem. As I said, you are extremely effective at spreading your message. You have the marketing know-how and you have the money to do it. The _way_ parents are hearing your message corroborated is down to your adverts in NYT, down to appearances on Oprah, down to your blogging etc. But what you are doing is winching autism on top of hardcore anti-vaccinationism. People believe you because you have a patina of respectability. They don’t look past the first line appearance and see the multitude of times <a href=”https://leftbrainrightbrain.co.uk/?p=428″>your predictions have been wrong</a>, that your <a href=”https://leftbrainrightbrain.co.uk/?p=820″>hypotheses have failed</a> and the <a href=”https://leftbrainrightbrain.co.uk/?p=602″>threats of violence</a> that you make to those who oppose you.

And lets be honest, even if there were 8,000 people at the ‘green our vaccines’ rally (a figure that is <a href=”https://leftbrainrightbrain.co.uk/?p=856″>very doubtful</a>) then you don’t even come close to representing teh autism community.

According to the latest figures, autism is at a rate of about 1 in 150 (0.6%) of the population. For the US that’s about 1,827,219 autistic people. That’s 3,645,438 parents. As you are believers in autism epidemic (and thus don’t believe autism exists in adults in significant numbers) lets be kind and half that number to take us back down to 1,827,219 parents.

That means that your 8,000 parents totals about 0.4% of the US autism parent community. But lets double the attendees (and oh hell, lets add on 100,000 of people we’ll think of as followers but non-attenders) to make 116,000. That means you now account for 6.4% of autism parent community.

To put it another way, 93.6% of US parents of autistic people either don’t know about you (doubtful in this internet and celeb obsessed age) or simply don’t offer you any credence. And that’s being very, very kind to your numerical position indeed.

AoA go on to claim that:

<blockquote>…there are five major problems with the AAP’s new approach:

1. You can’t defend the assertions

The “fewer antigens” argument has been a Paul Offit special for years. Not only is this argument confusing for parents to understand, it also means nothing. Offit’s claim is based exclusively on the removal of an older Pertussis vaccine (which was causing many problems) decades ago.

What parents see clearly is how many more vaccines they are getting.</blockquote>

This reveals the anti-science beating heart of AoA. A vaccine is just a vehicle for its contents. The antigens argument _is_ the point:

<blockquote>”Of course, most vaccines contain far fewer than 100 antigens (for example, the hepatitis B, diphtheria, and tetanus vaccines each contain 1 antigen), so the estimated number of vaccines to which a child could respond is conservative. But using this estimate, we would predict that if 11 vaccines were given to infants at one time, then about 0.1% of the immune system would be “used up.””</blockquote>

<a href=”http://pediatrics.aappublications.org/cgi/content/full/109/1/124”>Pediatrics</a&gt;

<blockquote>

2. The news is making them look very stupid

With the Hannah Poling case, Dr. Bernadine Healy’s recent comments, the potential for an Omnibus decision going our way, Julie Gerberding retreating, the IOM revisiting the “environment’s” role in autism, and the case reports of children falling into autism after vaccines continuing to roll in</blockquote>

The Hannah Poling case? Please demonstrate where that showed that vaccines cause or contribute to autism. Bernadine Healy was at one time (and maybe still is, I don’t know) <a href=”https://leftbrainrightbrain.co.uk/?p=846″>a tobacco company shill</a>. Gerderding and the IOM are indeed revisiting the ‘environmental’ roles in autism. What’s that got to do with vaccines? And what case reports of children falling into autism are we talking about?

This is what I meant about a patina of respectability. On the surface, it sounds, _great_ – plausible – to the untrained eye. However, a quick peek beneath the surface and it starts to shake apart.

<blockquote>

4. They are not dealing honestly with parent concerns

If you have no safety studies verifying the issue of combination risk of so many vaccines, defending the schedule in its current form will backfire on you. If your best defense is to cite the 600 deaths a year from HIB now being prevented, parents will compare this to the 1 in 150 risk or higher of autism and make their own conclusions. By not acknowledging that the risk-reward of vaccines is potentially wildly out of balance, parents will not listen to you.</blockquote>

Are you seriously suggesting that people will be more worried about autism than _death_ ???

And, as I’ve demonstrated, I don’t think that organisations that speak to less than one percent of autism parents can really claim to have their pulse on what autism parents really care about.

The last one is ‘Offit is a time bomb’. I’m not really sure what the point there is.

Poling Transparancy: correction

6 Jul

In a previous post, I commented (erroneously) that the HHS conceded the Hannah Poling case based on the expert reports and didn’t have the medical records. This was noted to be incorrect in a comment, and I appreciate the accurate information.

I apologize for taking so long to make the acknowledgment of the mistake more obvious (I had noted it in the comments).

The Docket shows that the expert reports were filed in December of 2007, 12/11/2007 and 12/13/2007. This is more than a month after the “Respondent’s Report” on 11/9/2007 (which I assume to be the concession).

In searching for those entries, I found a strange entry in the docket. Item 25, dated 12/14/2007 states

STATUS REPORT re deferring filing expert reports unless needed for attorney’s fees, filed by TERRY POLING. (Shoemaker, Clifford) (Entered: 12/14/2007)

I can see two meanings for this, and both are confusing to me (so are likely incorrect):

1) This is a status report requesting that the expert reports not be filed unless needed for the fee determination. But, they were already added to the docket. Would that mean that they would be pulled from the docket?

2) This is a status report on a previously entered request to defer filing the expert reports. In other words, a request was made previously and this is basically a statement noting that the previous request is no longer valid.

There are probably other explanations. The above are just speculations. Well, the comment that this entry seems strange to this reader isn’t a speculation, but you get the point, I hope.

A call to the the Special Masters: No Splinch, No Splunge

29 Jun

When a person in the Harry Potter world apparates but leaves some piece of him/herself behind, it is called “splinching“. In the world of Monty Python, “Splunge” means “I’m not saying yes and I’m not saying no and I’m not indecisive”.

At some point in the not-too-distant future, we should see a decision in the first part of the Autism Omnibus Proceeding, with the decision in the second part following a some time later.

What do these two things have in common? We need a clear, definitive decision from the Special Masters. No splinch. No splunge.

It will come as no surprise that I am expecting a the decision to go against the petitioners. Don’t get me wrong, I think it would be great if every person with a disability got the support–either as a lump sum, public services, or some combination of the two–that they needed for their lives. But, the problem is, I just don’t think that the petitioner’s science even comes close to proving this case.

No matter what happens, I expect that the losing side will appeal to the Federal Circuit. Should the decision go against the petitioners, and they lose the appeal, expect this to spill over to civil court.

For that reason, we need a clear, decisive well… decision. We need the Special Masters to write the sort of decision that tells the Federal Circuit, “this idea has no merit”. We need a decision that tells the civil courts, “don’t even let this one through the door” (think Blackwell).

I’m not saying I am right. I am not saying that this would be news to the Special Masters. I’m certainly not saying that this could influence them in any way.

What I am saying is that we are a very factionalized community. We need to move forward, and the vaccine issue is keeping that from happening. Progress will likely mean leaving some people behind with their old ideas. But the sooner we can move forward, the better. The sooner we can talk about issues that matter, the better. The sooner we can fight as a group for respect, rights, appropriate services, rather than fighting amongst ourselves, the better.

The Special Masters would likely see a strong decision as the best way to support the vaccine program (good idea, too). But, it would be one of best things they could do for the autism community.

Experts with an agenda and newcomers with an agenda

28 Jun

Everyone knows that a good meeting needs to have an agenda. Most people also knows that science being forced to fit a pre-conceived agenda is usually useless.

With that in mind, Gardiner Harris of the New York Times delivers an excellent report that discusses a meeting being held today that will…:

<blockquote>….call together some of the world’s leading experts on an obscure disease to discuss the controversial case of a 9-year-old girl from Athens, Ga. [Hannah Poling]…. [and]…a 6-year-old girl from Colorado [who] received FluMist, a flu vaccine, and about a week later “became weak with multiple episodes of falling to ground” and “difficulty walking,”….She was hospitalized and underwent surgery and was finally withdrawn from life support. She died on April 5, according to the report</blockquote>

(inserts mine)

You can expect the usual suspects to come out with horror show after horror show about this poor little girl who died and how The Evil Vaccines ™ are to blame. However, the truth is that – as with all previous convolutions of the autism/vaccine hypotheses, correlation does not equal causation.

<blockquote>”After caring for hundreds of children with mitochondrial disease, I can’t recall a single one that had a complication from vaccination,” said Dr. Darryl De Vivo, a professor of neurology and pediatrics at Columbia University who will present at the meeting on Sunday and is one of the premier experts in the field.</blockquote>

De Vivo also said:

<blockquote>as many as 700,000 people in the United States had flawed mitochondria, and in roughly 30,000 of them the genetic flaws were expansive enough to cause disease</blockquote>

In an email conversation with Sullivan (a regular commenter and author at this blog), Sullivan pointed out how this 700,000 – an opinion offered by an expert in the field – differed wildly from the <a href=”http://www.huffingtonpost.com/david-kirby/the-next-big-autism-bomb_b_93627.html&#8221; rel=”nofollow”>1 in 50</a> estimation offered by David Kirby which would result in 6,000,000 cases. Thats a fairly wild discrepancy.

Harris also quoted a great aunt of Hannah Poling who simply parroted the ‘green our vaccines’ nothingness:

<blockquote>What’s the schedule and number of vaccines?” Ms. Dunkle asked. “What’s the content of those vaccines?</blockquote>

In the case of the little girl who died, she had already received one set of vaccines with no incident. In the case of Hannah Poling, it is far from clear that the vaccines administered resulted in her autism diagnosis.

The bottom line for me is:

<blockquote>Many experts said infections could be so devastating to those with mitochondrial disorders that the risks associated with vaccines were far outweighed by the benefits. Still, none dismissed the notion that a vaccine could cause a decline in such children.</blockquote>

Which is, of course, true. Nobody disputes that people sometimes have adverse reactions to vaccinations. This is true of kids with mitochondrial issues as well as autistic people as well as people with no other issues at all. Its sad to me that people want to castigate vaccines for being imperfect. Nothing in life is absolutely assured and it is quite obviously far better for children to be as healthy as possible with a very small chance that a side effect may occur. This is even more true for kids with mitochondrial issues. Consier this statement:

<blockquote>Most of these kids [with mitochondrial issues] get a common cold, and either during the cold or soon after, the parents notice a drastic deterioration,” said Dr. Bruce H. Cohen, a neurologist at the Cleveland Clinic.</blockquote>

(inserts mine)

Now, if you said to these parents – we have a vaccine for the common cold. The chances of it working are very, very good but not 100%. The chances of it causing an adverse reaction are very, very low but not 0%. The chances of it causing a _fatal_ adverse reaction is even lower but still not 0% (I’ve got a figure of 1.3%<sup>1</sup>). The chances of your child becoming seriously ill following the common cold is very high. Do you want your child to have this vaccine?

I would imagine most of these parents would break your arm in the rush of trying to sign the acceptance papers.

Now, lets lengthen that scenario. The common cold vaccine is announced to the rest of the world and adopted into vaccine schedules. The usual suspects say how silly it is and how the common cold is ‘nothing’. They refuse to vaccine against the common cold. Herd immunity drops. A child catches a cold and sits next to a child with a mitochondrial issue at a GP’s surgery (for example). The vaccine the mito child has received doesn’t work – because we all know vaccines don’t work 100% of the time.

What will this ‘nothing’ common cold do to this mito child?

Society has an obligation to protect the weaker members of its society.

On that same theme, I noticed a new paper in my Inbox today. It discussed death rates of autistic people compared to the general population:

<strong> Mortality and causes of death in autism spectrum disorders: An update.</strong>

<blockquote> This study compared mortality among Danish citizens with autism spectrum disorders (ASDs) with that of the general population……In all, 26 persons with ASD had died, whereas the expected number of deaths was 13.5. Thus the mortality risk among those with ASD was nearly twice that of the general population</blockquote>

Nearly half of the 26 deaths of autistic people were due to Epilepsy rather than autism itself.

I would like to ask the kind permission of those who continue to try and make a story from nothing about autism and vaccines that we be allowed to move the debate onto areas that really, really need a big light shining on them. The heavy death rate of autistic people from comorbidities such as Epilepsy would be a great place to start.

[1] I got this using the <a href=”http://www.medalerts.org/vaersdb/index.html”>VAERS DB</a> (yes, I know the limitations but I wanted to use a DB given credence by the autism/vaccine believers). Out of a total amount of entries of 227,795 there were 3009 reported deaths.

Dear Mercury and MMR Militia

21 Jun

I want to write you all an open letter to offer you my opinion as to where you are going wrong. Before I do, I fully realise that this is a massive generalisation and that some of you won’t hold all the opinions I’m about to go through. I think though, that many of you do.

Three things prompted this open letter. First of all was David Kirby’s trip to the UK. Second was a comment from Kelli Ann Davies where she expressed surprise that some of us might know/guess/whatever the intentions of the science and medical community. Third was Ginger Taylor’s recent sulk about the AAP. I’ll touch on these things as I go through this.

You have a truly massive credibility issue which grows with every passing year. Once upon a time it was an issue with the science/medical community but now it is an issue with the general public. There are a number of reasons why this is so.

1) You cannot keep your story straight. You have (as I said to Kelli Anne) some first class marketing and PR people. As I recall, Lynn Redwood, Mark Blaxill and Sallie Bernard all have marketing qualifications. You also have numerous leading lights who are very, very rich. This means you have ample opportunity to lever your message into the heart of the US media system.

But that means nothing without a coherent story to sell. You don’t have one. I understand that you have recently talked about how the ‘story of vaccines’ has _evolved_ . That is stretching things more than a little. Its mercury, no its MMR, no its both, no its Aluminium, no its all three, no its all ingredients, no its the very vaccines themselves, no its the schedule they’re given. No – its ALL the above. And don’t forget the mitochondria!

The more ingredients you add to the pot, the more you have to explain why they are causative of autism. You didn’t even manage to do this when you were concentrating on just _one_ thing (thiomersal). The above is not an example of an evolving hypothesis. Its an example of an ever widening hypothesis as one after another, your original ideas have been taken down.

Nowhere is this better illustrated than David Kirby’s stumbling backwards and backwards:

In 2005, David said in a FAIR Autism Media interview:

It’s now 2005…..[W]e should see fewer cases entering the system [cdds] this year than we did last year.

When that didn’t happen he then said:

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…..total cases among 3-5 year olds, not changes in the rate of increase is the right measure.

That didn’t happen either.

You started off by pointing an air pistol at a target 20 feet away and missing. You worked your way through Magnums, Shotguns and Miniguns and kept missing. You currently have a canon wheeled right up to within a foot of the target and you’re _still_ missing.

2) Your science is weak and getting weaker. Sadly for you, the onus was (and still is) on you to provide evidence that vaccines in any of the myriad of hypotheses cause autism. Lets hypothetically agree with you that vaccines are in fact, fashioned by Satan and are in fact, tools of population control. That is not the point. The point is: _do they cause autism?_

There is not one paper that passes muster as valid science that offers corroborating evidence that any vaccine, any ingredient of vaccines or any schedule they are administered in causes autism. This is after over 10 years of trying to find one. What you are increasingly left with is a double conspiracy theory. In one barrel of the conspiracy theory, brave maverick doctors are having their research suppressed. In the other barrel of the conspiracy theory, Big Pharma shills are publishing science to refute the various vaccine hypotheses.

Of course, neither barrel is true. The brave maverick docs are not having their science suppressed. It is simply not good enough to pass peer review.

A good example of this is the science experts being presented at the Omnibus Autism proceedings. No Geier’s. No Jim Adams. No Boyd Haley. No Andrew Wakefield. At least, not so far anyway. And this is in the Vaccine Court, where standards of evidence are way lower than in a civil court, where – by the way – not a few of these same researchers science was not good enough to even be entered as evidence.

And you have this nasty habit of shooting yourselves in the foot. Only today David Kirby posted on the Huffington Post about how rubbish the VSD database was. The very same database the Geier’s recently used to allege a link between vaccines and neurodevelopmental disorders.

And the list goes on. The Hornig study? Refuted by Rick Rollens MIND Institute. The Nataf paper on Porphyrins? Liz Mumper, head of DAN! medical admits that even ‘normal’ children have raised Porphyrin levels. The Bernard et al paper? Refuted. Richard Deth’s work? Exposed and questioned.

3) Your choice of media people to represent you is doing you harm. I am not sure how the idea of latching onto Jenny McCarthy as a spokesperson for the anti-vaccine/autism connection came up. There are a few other celebs I can think of with more gravitas than McCarthy. In truth, you couldn’t have chosen worse. Already, she has made a public fool of herself (and you). As has her partner, Jim Carrey, with his ‘lazy ass’ FUBAR and calls to notice ‘warnings from the universe‘.

I understand that these events feel terribly cathartic to you but I would urge you to take off your rose tinted glasses and see how the real world perceives these kind of things. Its not good. Don’t take my word for it, go to a _mainstream_ news source, discount the people you know as friends/associates who are leaving comments and then see what people think.

You have also latched onto the words of Bernadine Healy. I can see why but she (is/was) a member of a paid lobby group that advances the ‘science’ of Philip Morris to put forward the idea passive smoking isn’t dangerous. How desperate do you have to be to turn to _this_ ‘authority’ for backup?

4) You cannot see that you are being humoured. I know that some of you have been very proud of your success in getting involved with things like the IACC and y’know, thats great – well done to you. And then there’s the ‘coup’ of getting the AAP to attend a DAN! conference and ‘work with’ them. But there’s one thing you seem to have forgotten. AAP members are medical scientists. They will go with the decent science.

I read a blog post from Ginger Taylor today which seemed to be telling the AAP their ‘window of opportunity’ to work with DAN! et al had closed due to the fact they endorsed a letter that a paediatrician had written on how to tackle parents who were nervous about vaccination.

Amusingly, Taylor also chided the AAP for not turning up to the ‘green our vaccines’ rally:

I warned that the window would only be open for a short time unless we saw real action, and would probably close around the time of the Green our Vaccines Rally if they didn’t show up for us in some respect.

Well the AAP didn’t show up for the rally and well… this certainly signals that the window is closed. They want it closed. And it looks like they may be locking it.

Can you not understand that to expect the AAP will turn up for a rally which touts such anti-science as Aluminium and Formaldehyde being at singularly dangerous levels in vaccines and Anti-Freeze being in them at all is the height of arrogant stupidity? Surely you cannot be that naive?

The truth is – and I get this from speaking to AAP, NIH, FDA and NHS members – that you had, and always will have, an opportunity to impress them with decent, peer reviewed science. That’s all you’ve ever needed. And that’s what you’ve never had.

5) The future. The person you’ve decided will be your public face is writing another book. <a href="http://stopthinkautism.blogspot.com/2008/06/today-autism-recovery-tomorrow-crystals.html"She says that:

It’s really an Indigo book…….We’re definitely the Indigos, you know, breaking down these walls so this, you know, New Earth behind us can happen.

And what’s your role in this?

…But people aren’t quite there yet and I kinda had to, not lower my vibration, change my vibration to focusing on the world hearing that message. Hearing that biomedical treatment does help these kids.

And then, slowly, you know I can put it in my speeches. and then in my last book I talked about the indigos and crystals. And I’m just like, I’m really following source, kind of I felt the need to do that, I’m just kind of dribbling it here and there until people, you know, have that spiritual awakening of spirituality.”

That’s where you’re going. You’re close to abandoning any kind of rational basis for your beliefs and just becoming Jenny’s followers in an Indigo Spiritual Awakening to herald in the New Earth..

Omnibus Autism testimony: Dr. Lord on what makes autistic kids improve

18 Jun

The following is transcribed by me from the first mp3 file for May 28th. This part starts around 41 minutes 24 seconds.

Ms. Ricciardella: Do children with autism, in general, improve?

Dr. Catherine Lord: Absolutely.

Ricciardella: What percentage? Do you know?

Lord: I mean I think that all children with autism improve in some ways, and how much is highly variable.

Ricciardella: Would that include children who have a regression in autism? Do they improve as well?

Lord: Yes.

Ricciardella: Do we know why?

Lord: No. I mean, some of the improvement seems to be getting back on developmental course. It’s like asking why do normal kids learn to do the things that they do. We can describe how they learn things but that process of how do kids learn to walk or talk when no one is really teaching them, we don’t know. And that’s the same for autism. We know that behavioral treatments make some difference but it’s a relatively small amount of difference compared to that force of development.

I’m not so sure that it’s only behavioral treatments that make “some” difference, but I agree that whatever therapy or teaching is provided, professional or parental, it’s the “force of development” that is the main thing that causes children to…. develop, which I believe is another way of saying, “improve.” I don’t believe there’s anything that one can do to speed up that force of development. Though I think it’s obvious that judicious use of reasonable kinds of therapies would probably help any autistic child make full use of what abilities he or she has to work with at any given point in time.

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