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David kirby plays the segregation game

3 Jan

A truly fascinating start to 2007. David Kirby writes a blog entry entitled ‘There is no autism epidemic’. Why is it fascinating? Two reasons. Firstly, it reveals the lengths David Kirby is willing to go to shift goalposts even further. The entire entry is replete with strawmen arguments. An example – in his opening paragraph, Kirby talks about being vilified by people who who believe that autism is a stable genetic condition and then names the neurodiversity community as amongst his most spirited detractors.

Nobody I know who shares the opinion of neurodiversity believes autism is *only* a stable genetic condition. However, unless we want to throw out what we know about Rett Syndrome then we do have to accept that some of the spectrum of autism is indeed a genetically based condition.

He further describes neurodiversity as a ‘group of adults with autism’. Again, nowhere near accurate. As I wrote about only yesterday, neurodiversity is not specifically associated with autism, neither is it anything other than a fairly nebulous opinion shared by people who think respect and equality matters. Neither is it an opinion not shared by people who are parents of autistic children.

Here’s how Kirby sums up ‘the neurodiverse’:

Most of them, I believe, have what science calls “Asperger’s Syndrome,” or very high functioning autism. From their eloquent and well reasoned point of view, autism has no “cause,” and it certainly requires no “cure.” To suggest otherwise is to brand these adults with the stigma of disease and disability, which is patently absurd given their educational and intellectual achievements.

No.

Time and time again, the people I speak to who are autistic and who are sharers of the opinion neurodiversity expounds tell me that as children they either were not diagnosed at all and left to rot or diagnosed with low functioning autism. How do I know this? I asked, Mr Kirby, and then I listened to the answer. I didn’t make up any old opinion that suits my argument better. Some, like Amanda Baggs, still _are_ considered low functioning. My Great Uncle was ‘low functioning’ and my Great Aunt was ‘high functioning’ – both were born way before thiomersal was ever around by the way. My Grandma said that her brother-in-law was ‘much worse’ as a child than as an adult. As adults they were able to converse.

The first part of Kirby’s post sets up the second. He is attempting to dismantle the idea of the autistic spectrum and at the same time, corral all ‘the neurodiverse’ into a place where they cannot speak about autism. Here’s the filibuster part of his post in full:

But if that’s autism, then the kids that I have met suffer from some other condition entirely. When I talk about “curing” autism, I am not talking about curing the “neurodiverse.”

I am talking about kids who begin talking and then, suddenly, never say another word.

I’m talking about kids who may never learn to read, write, tie their shoes or fall in love.

I’m talking about kids who sometimes wail in torture at three in the morning because something inside them hurts like a burning coal, but they can’t say what or where it is.

I’m talking about kids who can barely keep food in their inflamed, distressed guts, and when they do, it winds up in rivers of diarrhea or swirls of feces spread on a favorite carpet or pet (no one said this kind of “autism” was pretty).

I’m talking about kids who escape from their home in a blaze of alarms, only to be found hours later, freezing, alone and wandering the Interstate.

I’m talking about kids who have bitten their mother so hard and so often, they are on a first name basis at the emergency room.

I’m talking about kids who spin like fireworks until they fall and crack their heads, kids who will play with a pencil but not with their sister, kids who stare at nothing and scream at everything and don’t even realize it when their dad comes home from work.

These are the kids I want to see cured. And I don’t believe they have “autism.”

Woah! My daughter very rarely speaks, she’s just on the cusp of learning to write, she can’t tie her shoes, she wakes up regularly in the night (on New Years Eve she got up at half past midnight – not 3am) but she is distinctly burning coal free, she tolerates certain foods very well and refuses to touch other foods, she used to smear faeces regularly on both the carpet, the walls, her bed, us, the cat and she’s had the odd bout of diarrhoea (no one said autism was pretty, right?) – she’s pulled out of my hand on occasion and ran and I’ve followed, heart in mouth, she sometimes has the odd pinch or smack at me if I’ve told her she can’t have something, or I’m not getting what it is she wants, she loves to spin – and bounce (have you see my video Mr Kirby?) and she used to be non-social completely.

So yeah, I know what you’re talking about. Guess what? Its still autism. I still love her just the way she is. I still don’t want to change anything about who she is. I’m happy for her to be autistic.

Here’s what *I* think.

I think you’re goalpost shifting again Mr Kirby. You don’t believe they have autism? So what was the last two years about? Why the constant harping on about the CDDS until it stopped showing you what you wanted it to? Why the sudden panicky need to dismantle the idea of a spectrum of autism? Why redefine? Is redefining easier than explaining why your hypothesis isn’t panning out?

And what’s this about?

Asthma, diabetes, allergies and arthritis are ravaging their bodies in growing numbers

Sounds suitably scary but a) has nothing to do with autism and b) would appear to be partly wrong. And what about this:

There is something, or more likely some things in our modern air, water, food and drugs that are making genetically susceptible children sick, and we need to find out what they are.

Wow, is this an admission of error? From stating a belief that thiomersal caused autism you are now suggesting that ‘some things’ are making ‘children sick’ – that’s quite a change of heart. Why? Is it so hard for you to say – ‘guys, I was wrong. Back to the drawing board and I’m sorry you wasted your hard earned dosh on my book’.

Here’s something for you to read on the subject of neurodiversity Mr Kirby, I hope the point doesn’t escape you.

On May 19, a small group of people with Down Syndrome and their supporters disrupted the International Down Syndrome Screening Conference at Regents College in London. This is the first time that people with disabilities have spoken out publicly about prenatal screening. Their protest opens up the debate about genetics, eugenics, and the rights of disabled people.

As a result of the protest, the conference organizers allowed Anya Souza to speak from the podium, a platform her group had previously been denied. Ms. Souza, a trustee of the Down Syndrome Association who is labeled as “suffering” from the condition herself, told the doctors why she opposes the screenings.

The protesters found it unacceptable that doctors would discuss better ways of preventing the birth of people with Down Syndrome while excluding the voices of people with that label from the debate. That runs, they said, directly counter to one of the main demands of the disability rights movement: Nothing about us without us.

“We are what we are,” Gilbert [another protester] concluded. “Ask our opinion.”

Do you get the point(s) Mr Kirby? What you are doing by pretending that AS and autism are two different things is taking away the opinion of autistic people. You are doing it without evidence that you are right, without anything other than a ‘hunch’. An MO that is becoming more than a little familiar. You are following the proud tradition of Lenny Schafer and Rick Rollens, who also want to stop autistic adults talking about autistic children being OK just as they are.

Be brighter than them Mr Kirby. Try and understand that no one advocates letting kids suffer painful medical issues but that these things do not, and never did, equate to autism. What you’ve taken away over the last two years from both these adults and the kids of those you call friends and those you don’t is dignity. Nothing about us without us.

Update: Kristina weighs in too and Joel writes a first class piece on proving one is broken. Diva gives us good instructions and spotting autistic people and Do’C and Jospeh ferries across a river of shit.

David Kirby – what have you done?

20 Dec

I want to follow up somewhat on Joseph’s techncial takedown of David Kirby’s recent act of intellectual suicide. On the Huffington Post he wrote a bewildering post called ‘Bad News for Mercury Defenders‘ which discussed how Dan Olmsted’s recent sleuth-like skills led him to talking about a report that undermined studies conducted using VSD data.

Let us begin:

Next June, when the Vaccine Trial of the Century gets underway in Federal Claims Court, government lawyers will defend the direct injection of toxic mercury into infant children by repeating the well-worn mantra that “five large population studies” in Europe and the US have completely exonerated the vaccine preservative thimerosal as a possible cause of autism.

My, my – vaccine trial of the century eh? I’ll have to remember that one when the verdict comes back. This is crap. No lawyer will have to defend the direct injection of mercury into infant children. What they will have to do is counter the accusation that thiomersal in vaccines caused autism. Kirby (as usual) presents a highly distorted view to his adoring fans. The truth is that as in all legal cases, the burden of proof lies on those making the accusation. The accusation is not that mercury is dangerous. the accusation is that it caused autism.

Again:

The VSD study is constantly held up by public health officials as EXHIBIT A in the defense of injecting mercury into little kids.

No, its not. If its held up as anything, its held up as a study that refutes the link between thiomersal in vaccines and autism. Seriously – isn’t this man a journalist? What’s difficult to grasp about this concept?

Kirby goes on to diss the remaining studies and surmises this section of his blog thusly:

With so many holes shot through their “five large studies” defense, the government lawyers will be left to argue that autism is purely genetic, that there is no environmental component, and that the rates of illness have not “really” gone up. We are simply better at recognizing and diagnosing the disorder, that’s all.

Well, if that is the case, the mercury-defense lawyers should have no problem proving it. All they need do is produce irrefutable evidence that 1-in-166 American adults of ALL ages (and 1-in-104 men) fall somewhere within the autism spectrum disorder, at the same rate as kids. But they can’t, and they won’t.

I can only surmise that Kirby is a big fan of the Wizard of Oz and had strawmen on his mind whilst writing this. Yet _again_ he fails to grasp the fact that what this trial is about is simply if thiomersal caused autism. All the vaccine makers have to do is refute the ‘science’ from the other side. And lets be honest, after the RhoGAM smackdown that’s going to be about as difficult as falling off a log. It’ll be surprising if any of the ‘scientific’ evidence ever gets past a Daubert hearing as it failed to do in the RhoGAM case.

And whilst we’re at it, no one has said anything about arguing autism is purely genetic. Why in Gods name would _that_ be required? Autism may well have an environmental component – I know I think it does – but unless Kirby is trying to say that the word ‘environment’ is interchangable with the word ‘vaccine’ then this is also just…meaningless.

And lets get back to the clinical science for a moment:

Instead, one must also consider biological studies (animal, clinical, test tube) when assessing causation. And that’s where the plaintiffs will come to court armed with reams of published evidence – produced at Harvard, Columbia, Davis, etc., and printed in prestigious journals – to suggest a highly plausible biological mechanism that would link a known neurotoxin with a neuro-developmental disorder

Has no one broken the news of the thiomersal/RHOGam/autism case to Kirby? _All_ the ‘science’ that Kirby is talking about here was brought to that trial (follow the link and you can download the entire Daubert findings and read the studies presented for yourself) and was cumulatively dismissed. Here’s what the presiding Judge stated:

However, upon being subjected to extensive cross examination, much of Dr. Geier’s analysis, based upon his collective review of a motley assortment of diverse literature, proved, in the Court’s view, to be overstated……[Dr. Geier] could not point to a single study that conclusively determined that any amount of mercury could cause the specific neurological disorder of autism.

So, that’s exactly what effect eliminating VSD based studies will have on the respondents case. None whatsoever.

But what about the plaintiffs? They have to prove beyond reasonable doubt that thiomersal in vaccines caused autism. And as Kirby helpfully points out:

….They wanted to know if the US database, the Vaccine Safety Datalink (VSD), could be used to compare autism rates in kids before, during, and after the gradual removal of thimerosal, which began in roughly 2000.

Unfortunately, the answer was a resounding “not really.” A laundry list of “weaknesses” and “limitations” associated with the database would render such a comparative analysis “uninformative and potentially misleading,” the panel said, (though it did suggest some excellent ways to re-approach the data going into the future).

Some weaknesses had to do with changes in medical practices over time. But many of the limitations sprang directly from the poorly designed VSD study itself….

So what studies could be killed off by this examination. Well, there are two actually. The first one is Verstraeten et al (2000) which is the one we’ve been discussing so far and Kirby’s been bashing. The other one is Geier and Geier (2005) which they plagiarised from Verstraeten et al (2000). Oops.

Why does the nuking of Geier matter whilst the nuking of Verstraeten does not? Burden of proof, which lies with the prosecution. The Geier paper will be used to help _establish_ causation which is vital, not prove it didn’t happen, which is not called for. The Geier paper (which was crap anyway, lets face it) has now been neatly and effectively taken out by Olmsted and Kirby. Don’t Americans refer to that as friendly fire? By removing Geier 2005 from the playing field, the prosecution are now left with clinical science which has already failed one Daubert hearing (I believe the legal term is ‘setting a precedent’) and any epidemiological data they can scrape together from VAERS and CDDS.

As far as VAERS go, I’d like to remind people of my own experimentation with VAERS. And as far as CDDS data goes, lets remind ourselves one more time what Kirby has said about CDDS data:

“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.

And here, helpfully provided by Dad of Cameron are the ever-growing numbers in that cohort.

There’s also the small matter of The Simpsonwood Conspiracy. To quote Joseph:

….it completely undermines the foundations of the Simpsonwood conspiracy theory. You see, Verstraeten et al. were supposed to have found significant associations between thimerosal and neurodevelopmental outcomes beyond those that were reported in 2003. But now Kirby is endorsing a NIH report which says that ecological studies on the VSD database, specifically those done by Verstraeten et al., are likely flawed.

In other words, without the VSD data being good, the Simpsonwood Conspiracy is a non-starter.

Amazing.

Mark Geier, David Geier and the VSD

10 Oct

Introduction

One of the many anecdotal lynch pins of the Mercury Militia is the fabled story of what happened when the Geier’s attempted to study the VSD database.

Please bear in mind that to the Militia this story carries a *lot* of weight. It is one of the few supporting crutches left under the hypothesis that since thiomersal was removed from vaccines autism cases have gone down. Educational data has failed them. CDDS data has failed them. The Geier’s paper using VAERS (a non starter if they’d only thought about it) was so bad it couldn’t be published in a proper science journal and so this VSD story is all that’s left.

This story is enshrined in the hallowed pages of Evidence of Harm although the source of the story is unclear. Here’s the Militia version.

What The Geier’s Said

The VSD is the Vaccine Safety Database. This database carries raw data related to vaccine safety. The Geier’s were allowed access to this data, together with their computer expert Vale Kernik who would run the statistical programming tool in the SAS language that the CDC’s VSD uses. SAS is a widely used solution for statistical analysis.

The VSD’s Wikipedia page says that:

Only two outside researchers, Mark Geier and David Geier, have thus far gained access to the raw data. They faced formidable obstacles before being allowed into the CDC computer center, and then resistance from staff and software malfunctions once inside. Nevertheless, they reportedly found highly elevated risks for autism among children in the highest mercury exposure group. The Geiers study on the VSD, “A two-phased population epidemiological study of the safety of thimerosal-containing vaccines: a follow-up analysis” was published in the Medical Science Monitor in 2004 volume 11(4):CR160-CR170.

NB: This page has been edited by a member of the Geier household – against Wikipedia recommendations.

Evidence of Harm (the Kirby book) deals with the same event:

In late July the CDC informed the Geiers that the requested data set had been assembled. After paying a processing fee of $3,200, the Geiers were given two dates in August to come and run their studies. But there was another entirely unexpected wrinkle. Just two days before their appointment, a CDC technician called to make sure they were fluent in the programming language SAS, which is used in the VSD database. The Geiers had never heard of it before. “You must not be epidemiologists,” the technician said, “They all speak SAS.” If that were true it was news to the Geiers……Reluctantly they cancelled the appointment. It took two weeks to find someone who could run SAS…..They got new dates in October 2003… the dad, Vale Krenik, flew in from Texas. The were met by a woman who introduced herself and said she would be their “monitor

Evidence of Harm, p280 – 282.

And then things got very surreal. Their ‘expert’ programmer (who apparently taught himself SAS in two weeks) was stymied by the most dreaded sights for programmers – a command line interface.

How on earth can this be happening?” Mark muttered shaking his head, “Once again they got us.” Silence filled the room. There would be no number crunching today. The men stared at the screen.

Sorry. I’m being facetious. Any ‘expert’ who can’t work in a command line at even a very basic level is _not_ an expert.

The weirdness continued when the CDC monitor who was due to accompany the fearless trio for the duration of their stay popped her head out the door, looked both ways, came back into the room and:

She sat down and took a deep breath. “Don’t tell anyone this,” she said in a low voice, “But I can help you.”….I’m telling you, they know,” she said conspiratorially. “There’s a big problem”…..”The autism numbers are going down,” she said, “We are watching them drop.”

This mystery CDC monitor became known as ‘Mrs Toast’. Over on the EoH Yahoo Group, it was discussed why:

There is a woman who I refer to as Mrs. Toast. She is a CDC staffer who was responsible for monitoring the Geiers when they were instructed to visit the Vaccine Safety Datalink by Congress. When she saw the Geiers datasets, she walked out into the hallway, looked both ways, and came back into the room shutting the door behind her.

The Geiers thought they had epi-evidence. Mrs. Toast told them to look at hers. She told them she was responsible for running weekly autism datasets. She was instructed to run datasets on HMO vaccination adverse outcomes to see what effect removing thimerosal from vaccines was having on the epidemic. She had an affected child and made sure that the Geiers understood that the rates were dropping each and every week.

Author David Kirby had an interview set up, flew down to Atlanta, was in a car on the way to CDC to talk to her, but CDC had found out and they were threatening for end her career if she spoke to him.

When Congressman Dave Weldon found out about her not willing to blow the whistle on CDC’s cover-up he said, “THIS WOMAN IS TOAST!” Which is were I gave her the formal name of Mrs. Toast.

Robert Bloch, EoH Yahoo Group

Hilarious right? Mrs Toast.

And so, off trudge the Geier’s with their expert (the one unable to operate DOS). _Imagine_ their surprise when they get a letter from the CDC that said:

1) The Geier’s had violated the terms of their IRB
2) They asked how to merge datasets in a contradiction of the agreed terms of use of the data
3) They were told they couldn’t and yet they tried to anyway
4) If they had managed to merge the datasets they would have increased the risk of a breach of confidentiality.
5) The research team had attempted to rename data files to make them look like part of the SAS program (by changing the file extension to ‘.sas’)

As a result of this, the Geier’s IRB (Kasier) suspended them from undertaking any more data collection at the VSD.

The Geier’s responded by hotly denying these allegations. They first state that they didn’t violate the protocol but as Kathleen says in her exhaustive look at their reply:

The Geiers here claim to have followed the design of their research protocol, yet simultaneously acknowledge that they were attempting to conduct analyses of information not encompassed by it.

More amusingly, on page two of their reply the Geier’s state:

It is impossible for the datasets given to us by CDC to be merged

And then on page three of the same letter state:

What we were attempting to accomplish was to merge the datasets given to us by CDC to build a record…

And so the situation is now that the Geier’s pet ‘expert’ couldn’t figure out SAS, they had no meaningful results and what they did have was gained under extreme deception to the point their IRB approval was suspended.

And so, they decided to go ahead and publish anyway (well, you would, wouldn’t you?) and thus A two-phased population epidemiological study of the safety of thimerosal-containing vaccines: a follow-up analysis was born in 2005 (hereafter referred to as G05).

Geier, Geier, pants on fire?

G05 made reference to the VSD data that the Geier’s couldn’t collect/collected part of/pick your belief. In this respect it was similar to a paper written by ex-CDC staff member Dr. Thomas Verstraeten which _also_ used VSD data to look at thiomersal and autism in 2000. This paper (hereafter referred to as V00) found a statistically significant correlation between thiomersal and developmental disorders.

Oh no!!!! Doesn’t this back up the Geier’s et al?

Well, it _might_ except that as Verstraeten himself states in a letter to Paediatrics:

The CDC screening study of thimerosal-containing vaccines was perceived at first as a positive study that found an association between thimerosal and some neurodevelopmental outcomes. This was the perception both independent scientists and antivaccine lobbyists had at the conclusion of the first phase of the study. It was foreseen from the very start that any positive outcome would lead to a second phase. The validity of the first-phase results needed urgent validation in view of the large potential public health impact. Did the CDC purposefully select a second phase that would contradict the first phase? Certainly not. The push to urgently perform the second phase at health maintenance organization C came entirely from myself, because I felt that *the first-phase results were too prone to potential biases* to be the basis for important public health decisions.

Because *the findings of the first phase were not replicated in the second phase*, the perception of the study changed from a positive to a neutral study. Surprisingly, however, the study is being interpreted now as negative by many, including the antivaccine lobbyists.

So, in short, the first phase of the study using a small sample size indicated there might be an issue. When the second phase was undertaken with a larger sample size, the issue disappeared. Not uncommon in the slightest. Its standard practice to conduct a small, pilot study to see if there’s any issue to study further before committing large amounts of public money to a full scale study.

But I digress – back to the Geier’s.

They knew about the V00 paper – of course they did, it would be hard not to – and as they wrote G05 then they looked at it again. Remember that the Geier’s had struggled at the CDC VSD headquarters.

As Kathleen once again unearthed, the Geier’s – with a lack of VSD data at their disposal wrote their paper. It had some odd elements to it. Here’s a table of stats from the V00 pilot study:

And here’s a table of stats from G05:

Take a look at the numbers. Aside from one category they’re identical. Further the V00 paper states:

The final number of children thus included in our cohort was 109,993.

And G05 states:

The final number of children thus included in the cohort examined was 109,993

Woah! Spooky! By some miraculous, completely bizarre accidental coincidence, the Geier’s – who had little to no data from their visit to the VSD – have the _exact same cohort numbers and divisional figures_ as a paper written 5 years earlier resulting from a pilot study that showed a now debunked association!! What are the odds of _that_ ? I wish I knew a betting man who could tell me!

And maybe my betting amigo could tell me the odds of those same two papers having over ten more virtually identical passages and/or tables of figures? Maybe the Geier’s should drop the litigation gigs and move to Vegas and live on the strip.

A Different Interpretation

So here’s what _I_ think happened. Just conjecture but persuasive I think.

First of all, this odd SAS programming language. The CDC think its common amongst stat-fans. The Geier’s say its really really rare. Google says there are over four and a half million web related resources for SAS programming. That doesn’t sound pretty rare to me.

A leading SAS expert says:

Millions of people around the world in business, science, government, and education use SAS software to work with data. SAS software runs on many operating systems, including Microsoft Windows, UNIX, OS/2, Mac, MVS, and VMS. Most features of SAS software operate the same way in these different operating systems.

Still not sounding rare. In fact its one of the few apps that runs on Win, Mac and Unix. Not a good indicator of rarity.

And as for how quickly their ‘expert’ was defeated by SAS, SAS author Rick Astor states:

Fortunately, SAS programming is not that hard to learn.

Unless of course you’re a computer expert terrified of command lines. Vale Krenik is quoted and described on this page. His job (and former jobs) is described as:

Business Manager, Strategic Supplier Manager, Global Telecom Manager

It’s true that one of these roles has a techy requirement but absolutely _none_ can be swapped with the title ‘programmer’ or ‘expert’.

I think that the Geier’s needed someone who knew computers and settled on Krenik. When it came to it, Krenik didn’t know what the hell to do with SAS. If you’re reading this Mr Krenik, the three lines of code you need to merge datasets in SAS are available. I think they panicked and tried to grab as much data as they could in a brute force attack and then change the data files appearance to try and make them look like SAS files by renaming them with a ‘.sas’ extension.

I further think that the whole Mrs Toast episode is entirely fictitious. It even reads like a bad John Grisham novel. Bloch states that Kirby had an interview set up with the nameless Mrs Toast and that she cancelled at the last minute. Frankly, I don’t believe a word of it. I wonder who set up and then cancelled this meeting? One of the Geier’s by any chance? Does anybody know?

And then there’s the magically duplicated data. The Geier’s realised their VSD data landgrab had failed utterly and so they copied the data (and hence conclusions) from the V00 paper.

I don’t believe the Geier’s have ever seen VSD data. I don’t believe ‘Mrs Toast’ exists.

Our thanks and appreciation should go to Kathleen for the painstaking research she has assembled on the Geier’s. I know mine do.

Originally posted at Left Brain/Right Brain.

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