Archive | David Kirby RSS feed for this section

Autism Omnibus and shrinking hypotheses

13 May

The number of people who have made confident assertions about thiomersal causing autism over the last four years or so is astounding.

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

– David Kirby

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.

– David Kirby

“Late 2006 should be the first time that rates go down” said Handley. “If they don’t, our. hypothesis will need to be reexamined.”

– JB Handley

…I would like to make a virtual wager that within the next 18-24 months scientific evidence will make the thimerosal-autism link a near certainty.

– Richard Deth, March 22, 2006.

All these statements have one thing in common, they promote the idea that mercury (thiomersal in particular) causes autism in either all, or the vast majority of cases.

However, listening to the Autism Omnibus yesterday provided a very interesting change from this perspective:

In some kids, there’s enough of it that it sets off this chronic neuroinflammatory pattern that can lead to regressive autism,” said attorney Mike Williams.

ABC.

Note the new language: ‘some kids’….’regressive autism’…..’can lead’.

It seems the days of ‘all autism is mercury poisoning’ are long gone.

Petitioners presented a very interesting expert witness yesterday – a Dr Sander Greenland from UCLA who is a Professor of Epidemiology.

Dr Greenland argued some strange facts for the PSC but completely in line with this new tack that I can’t even remember being argued in the Cedillo hearing (thiomersal may cause regressive autism in some kids).

Greenland essentially argued that all the current epidemiology regarding autism and thiomersal was not good enough to detect thiomersal causation in regressive autism – this is from his submitted report:

A simple example may clarify this point. If a vaccine is not associated with any type of disorder in the category, we should expect to see the same risk when comparing vaccinated to the unvaccinated. Suppose, however, that in reality the vaccine is associated with a two-fold increase in the risk of a type of disorder in the category, but not associated with any other type. Suppose also that, without the vaccine, the associated type represents only one-tenth (10%) of the disease category, and that the total number of cases in the category would be 100. Then, without the vaccine, the number of cases with the associated type would be 100/10 = 10. With the vaccine, however, the number of cases with the associated type would double, to 20, an excess of 10 cases over the original 10 with the associated type. This excess produced by the vaccine would result in a total of 100+10 = 110 cases over the full category, which is only a 10% increase in the risk of any type in the category. Thus, the risk ratio for getting any type in the category would be only 110/100 = 1.1. Such a small risk ratio cannot be reliably distinguished from 1 by ordinary epidemiologic studies.

In other words, the amount of autism caused by vaccines is in fact too small to be detected by epidemiology. If, of course, it is associated with it at all – a point made later by Dr Greenland:

The brief overview given above supports the idea that the association of MCV (mercury containing vaccine) with autism is small or nonexistent.

But really his point is that if thiomersal does cause autism (and whilst he professes to have ‘no opinion’ on the matter it may be telling that he refers to the idea as a hypothesis throughout his report, not a theory) it causes it in very, very small numbers indeed.

Dr Greenland passed no opinion the validity of the hypothesis itself. Rather, he was there to study epidemiology. We have to respect his opinion even if we disagree with it.

The more telling aspect for me was this sudden conversion from ‘vaccines cause autism’ to this suddenly tiny percentage – so small to be undetectable by epidemiology up to this point. That’s quite a step back. What will become of the Omnibus cases that are not considered’ regressive’? Or the ones (like Michelle Cedillo) who were claimed to be regressive but were, upon viewing the video evidence, clearly not. Are the PSC really throwing cases away?

Presto Chango

12 May

Now, there’s nothing wrong with making a mistake. Nothing at all. People make mistakes all the time – as I saw on the back of a window cleaners van the other day – ‘guano happens’.

For a trivial mistake (spelling etc) its easy to change things on a blog. I can simply edit and re-save the post. I don’t need to tell anyone my Bluto sized fingers have typed ‘teh’ instead of ‘the’ again. I can just change it and republish.

However, sometimes, you make a mistake that is rather more important. A mistake that changes the factual interpretation _and_ the tone of a post. These should be altered _and_ a little note be made close to the alteration to point out the error and the fact its fixed. Trying to get away with making such large scale errors and hoping no one notices is bad form.

If one is a journalist – a professional writer – you would expect the notification as a matter of course. Don’t journalists pride themselves on their accuracy and attention to detail?

So it was something of a surprise to see that the article Sullivan discussed written by David Kirby had undergone a mysterious and totally unremarked upon alteration.

This (click for larger image and then use your browsers ‘back’ button to return here after viewing) is the original post David made on the Huffington Post. The page was recovered from Google Cache. As you can see, this contains the erroneous ‘34,000’ figure and all that flows from it. The maths error that Sullivan noted.

However, visiting the Huffington Post post today reveals the following:

.

(Again, click for bigger).

As we can see, the post has undergone very significant change of a key part of important factual information. With no (that I can see) notification that the data has been altered. I took a screen shot of the entire page as of 09:43 on Mon 12th May 2008 and couldn’t see such a notification. Maybe someone else can see one?

Tut tut.

However, even more curiously, the same article David posted at the Age of Autism blog still contains the error.

(Again, click for bigger).

Why? Are AoA readers less interested in facts? Is David too busy packing for his trip over here in June (which I am _very_ much looking forward to by the way)?

Adults, Autism and Scotland

10 May

I have been thinking recently how nice it is that the online autism community has moved on from the quarterly analyses of the CDDS data. For those who are blissfully unaware–the California Department of Developmental Services (CDDS) publishes statistics on the people it serves. They do this every three months.

These data are a favorite of people who would like to promote the idea of an autism ‘epidemic’. Mr. David Kirby has a book and enough power point slides for three debates which are filled with (mis)interpretations of these data.

For the past year or so, every three months the CDDS publishes the data followed by people stating, “The CDDS autism count has gone up, this proves there is an epidemic” and “the CDDS autism count has gone down, this proves the epidemic”. Both seemingly contradictory statements being made on the same dataset. These were quickly followed by multiple bloggers pointing out that the interpretations made were incorrect.

Three things happened that made for a break. (1) Mr. Kirby declared that he was moving on from autism, (2) the CDDS is on a break while they rework the way they compile the data and (3) A case was conceded in the Autism Omnibus which shifted the debate (and ended item (1)).

I was very happy to see the CDDS phase of the autism discussion end.

Then, much to my dismay, the same arguments started up again. This time it is data from Scotland, not the CDDS being misused. Otherwise, it is the same old arguments and the same bad analyses. Well…almost. Some new bad analyses have been added.

Mr. Kirby has a discussion of the Scottish data on another blog. Let’s avoid the conceptual mistakes (such as assuming that somehow everyone is properly identified and receiving services). Before we get to the real implications of this, let’s take a break and look at the math errors, shall we?

Mr Kirby takes this graph of data from the Scottish report:

And states:

Let’s look at the numbers. There are approximately 34,000 young people with autism in Scotland, born during the 16 years from 1987-2002. That is an average of 2,125 cases per birth cohort. But among older people, born during the 31 years between 1955 and 1986, there are only about 600 reported cases, or just over 19 cases a year.

Based on this, he has determined that if the true incidence of autism is constant, about 1 in 110 of the adults are missing from the count.

OK, go back and click on that image for me. I know you skipped over it, but, go take a look at the bigger version.

Did you see it? Yep, the number is not 34,000, but 3,400 adults with autism in the Scottish survey. A factor of 10. Don’t worry if you missed it. Mr Kirby (who spent some time ‘analyzing’ the data) and at least 20 people who responded to his post missed it too.

At this point, I can hear the screams of “So what, that’s just a small mistake. You are trying to distract us all from the big picture.” Because, in the end, even though Mr. Kirby is off by a factor of 10 and there aren’t 100 times more kids than adults receiving services with an autism label in Scotland, there is a roughly factor of 10 difference in the administrative prevalence of autism.

A factor of 10 is still big. I’d argue it’s huge. In fact, I’d scream right back at the people who are trying to use this for political gain.We can argue back and forth whether it’s real. But, consider some of the possibilities for the Scottish survey:

  1. the numbers are correct, all autistics are correctly counted.
  2. People are getting appropriate services, but some are under the wrong label (e.g. intellectual disability).
  3. Some people are getting the wrong services because of an incorrect label (e.g. schizophrenia).
  4. People who really should be getting services and supports are not getting any.

Let’s face it, if there’s a chance that people are getting the wrong services, we should be looking. And, yes, it is a very real possibility. Remember the big stink some people made when it was implied that some adults with the label of Schizophrenia might actually be autistic? Well, David Mandell is scheduled to talk about this at IMFAR this year in his paper: Evidence of autism in a psychiatrically hospitalized sample.

A £500,000 project to look for adults with Autism in the UK has been recently announced. To quote one of the researchers on this project:

“Adults with autism and Asperger’s syndrome are too often abandoned by services with their families left to struggle alone. Equally, people are frequently missaprorpriately referred to either mental health or learning disability services

“This study will inform the development of a national strategy designed to ensure that adults with autism and Asperger’s syndrome are supported to have full lives.”

“We still don’t know enough about autism, but we do know that left unsupported, it can have a devastating impact on those who have the condition and their families. One of the key gaps in our knowledge is simple – we don’t know how many people have the condition in any given area. That is why I am ordering a study to address this. “

It sounds like a really tough project. I don’t know if this study can really be accomplished. But, I have hopes that it could help improve the lives of adult autistics.

Now, as long as we brought up the Scottish survey, why not look at some of the details that were missed by others?

One question was how many of the individuals had “other behavioural or biomedical conditions?”. For the adults, this was 30% of the total. For the children, this was 3% of the total. Is this an indication that the kids being identified today actually have less severe symptoms than the adults? Even without that, only 1% have “other…biomedical conditions”?!? Where are all the kids with all the conditions like bowel problems that some groups claim define autism?

Another interesting fact from the survey is that over 50% of the children are in mainstream schools.

Yet another factoid: about 32% of the children in the survey have Asperger syndrome. Of those, half are listed as having ‘no learning disabilities’. For adults, only 14% are listed as having Asperger syndrome.

Surveys of those getting services are prone to a lot of errors–as has been discussed in the past for the CDDS data many times. So, these data should not be taken as hard epidemiological counts of the actual number of people in Scotland with autism. However, these data do not support the idea that the younger generation of autistics have greater challenges than the adults had to overcome.

I am actually glad that the subject came up of autism in Scotland. Why? Because in looking for some of these data, I found the website for the National Autistic Society Scotland. I particularly liked this page: I Exist: the message from adults with autism in Scotland.

For me, I have just finished a box of McVitie’s HobNobs while writing this. I don’t know if they are Scottish, but I love them. Perhaps I’ll open the other box to celebrate a study of adults with autism.

Additional

Sullivan’s catch of David’s maths error is good but I thought to myself as soon as I heard about this Scottish report that I’d heard about it before. I had. I blogged on this audit three years ago. One of the most fascinating aspects of the paper was when local authorities were asked for their opinions on the following question:

Research tells us that prevalence rates of autistic spectrum disorder represent an underestimate. To what extent do you consider the numbers above to be an accurate reflection of all those who live in your area?

The answers were very interesting. About 45% of the areas questioned said that the prevalence for adults was grossly underestimated, badly reported and that a lot of these adults exist without diagnosis. For example:

Argyll & Bute Council
It is believed that the figures represent a significant under-representation of those with ASD in Argyll and Bute. This was thought to be due to a historical under-diagnosis and the absence of clearly defined referral pathways and multi-agency assessment processes for adults.

East Renfrewshire Council, NHS A&C and Greater Glasgow NHS

…as a result of changing patterns of diagnosis over recent years there are likely to be substantial numbers of adults with ASD who are not known to services and are not diagnosed as having ASDs.

AYRSHIRE AND ARRAN
It is apparent that information collection and collation for adults is almost non existent.

DUMFRIES AND GALLOWAY
There is little doubt that this number is far short of the actual number of adults in Dumfries & Galloway with ASD.

GRAMPIAN
There is low diagnosis for longstanding clients, whom workers are aware have autism as well as a learning disability.

HIGHLAND
It is believed that these figures comprise a significant underestimate due to the lack of a diagnostic process particularly for adults. It is believed that the figures for younger children are accurate due to the development of diagnostic tools for children are accurate due to the development of diagnostic tools for children and the establishment of multi-disciplinary partnerships which include education.

LANARKSHIRE
The estimated numbers provided for the pre-school and primary school ages are thought to be a reasonably accurate reflection of the true picture. However the estimated number of secondary school children is less accurate and the estimated number of adults with ASD is likely to be a considerable underestimate of the true prevalence.

ORKNEY
Figures for children are an accurate representation of needs. One or two children may yet be diagnosed. Figures for adults are under estimated as diagnosis has not been made and access to specialists is variable.

Perth & Kinross Council
Figures for adults reflect the national findings that the numbers known to services/diagnosed represent a significant underestimate of those individuals likely to be affected. For example day centre managers locally consider a number of people to be on the spectrum who have had no formal diagnosis.

Pretty interesting stuff I think you’ll agree. This means that about 45% of the areas questioned said that the prevalence for adults was grossly underestimated, badly reported and that a lot of these adults exist without diagnosis. The two really stand out quotes for me were:

There is low diagnosis for longstanding clients, whom workers are aware have autism as well as a learning disability……day centre managers locally consider a number of people to be on the spectrum who have had no formal diagnosis.

So as well as the excellent points Sullivan raised, I’d also like to ask how it is possible to place any kind of interpretation of the data when the fact that adult prevalence is grossly under-reported is so well established?

Alexander Krakow – The Next Bombshell

27 Apr

And so, the next twist in the Autism Omnibus is revealed. Writing in Spectrum Publications in a piece rather hopefully entitled ‘The Next Hannah Poling’ David Kirby writes:

….the boy who was selected to replace Hannah Poling as the first-ever thimerosal “test case” in so-called Vaccine Court, has just been found with many of the same unusual metabolic markers as… you guessed it, Hannah Poling.

……..

….the court announced that the replacement thimerosal test case was also being withdrawn, in order to “proceed to an individual hearing on a different theory of causation.”

……..

“We want to pursue an additional theory, not a different theory,” the boy’s father told me. “We are by no means abandoning the thimerosal theory of causation but, in the context of the test case, the thimerosal theory would have eclipsed our other evidence, including evidence of metabolic dysfunction,” such as impaired mitchondria and low cellular energy.

The boy is Alexander Krakow, son of EoH regular, lawyer Bob Krakow. Up until very recently, lawyer Bob could be heard trumpeting the evils of thiomersal to the exclusion of just about everything else (MMR aside of course). Now, however, the Krakow’s have a new hypothesis (DK refers to ‘theory’ through his article but it isn’t a theory) – but note they still give a shout out to thiomersal anyway.

Now, much as DK and the Krakow’s might want to think this is important, it really isn’t. This situation is in no way similar to Hannah Poling’s. In that scenario, HHS said she was vaccine damaged (but again, despite what DK says, there was no concession she had been made autistic by her vaccines – an opinion the medical evidence and mitochondrial experts agree with) and they recommended awarding damages uncontested. In Alexander Krakow’s case, his _parents_ have withdrawn him from the Omnibus. No science has been presented, HHS have not said anything at all about his medical conditions. All we have so far is the Krakow’s opinion that their son has a mitochondrial disorder.

This is especially interesting in the light of the report of the Krakow’s own hand-picked medical expert, DAN doctor Elizabeth Mumper – not only _a_ DAN! doctor but the ‘Medical Director’ of ARI.

This report prepared by Mumper states:

In my best professional judgement…..it is more likely than not that the thimerosal in the childhood vaccines Alexander Krakow received was a substantial contributing factor to his neurodevelopmental problems.

So the ARI medical director blames thiomersal. What did she have to say about mitochondria?

Well, nothing. The word ‘mitochondria’ is not mentioned once in the whole report.

In his article DK talks about Alexander Krakow having the same ‘markers’ as Hannah Poling. He neglects to say what they are however, or how he concludes they are markers. He also neglects to mention how the DAN! medical director singularly failed to detect any of these so called ‘markers’.

Perhaps the biggest mark against Alexander Krakow having ‘mito induced autism from vaccines’ is the fact that his medical report (which stated the thiomersal dunnit) made no mention of a fever or raised temperature. If I recall correctly, it was a key part of the Hannah Poling scenario that the vaccines had given her a fever and it was this which aggravated her underlying mitochondrial disorder and in turn caused her autism. Alexander Krakow’s medical report mentioned no fever at all.

David must also be aware of the fact that the ‘markers’ he refers to are, at best, markers of mitochondrial issues. Lots kids with mito issues have them. They bear no relation to vaccine injury. I was disappointed to see this issue being talked around but I have some hopes that later this year – towards the autumn maybe – this issue will be made abundantly clear.

So, all in all I am deeply puzzled as to how this is ‘the next bombshell’ or even how Alexander Krakow can be considered to have any kind of mitochondrial related autism issue. The HHS definitely did not concede this case and my guess is that they will be more than happy – given Bob Krakow’s own expert medical report into his son – to contest when their case comes up separately.

My further guess is that we will see some more people switch horses sometime fairly soon. I’m also guessing that – like the Krakow’s – it will be done against their lawyers advice.

Mitochondra and vaccines – the science

23 Apr

Dozens of autism cases (and perhaps more) currently filed in so-called Vaccine Court will almost certainly be compensated this year. Why? Because a little girl named Hannah Poling with a supposedly rare mitochondrial condition was recently compensated for her own vaccine injuries, including autism and epilepsy.

But I have personally identified at least a dozen (and there are reports of many more) children with cases in the court who meet the exact same medical criteria as Hannah, and whose cases will almost surely be compensated as well — each time with the attendant media fanfare.

My prediction is that, by Election Day, few Americans will still believe there is absolutely no evidence to link vaccines to at least some cases of regressive autism.

Thus speaks David Kirby in the Huffington Post. On the last point I have no doubt that he is correct. In fact, I’ll take it one step further – few citizens of the world, let alone America ill still believe there is absolutely no evidence to link vaccines to at least some cases of regressive autism.

However, I wish, with all due respect to David, like to highlight the differences in the above statement and the subtitle of his famous book. David talks of linking ‘vaccines to at least some cases of regressive autism’.

That’s quite a tentative statement when compared with the strapline ‘Mercury in Vaccines and the Autism Epidemic’

But that is really a side issue that I simply can’t resist highlighting. The main talking point was – by a strange quirk of irony – also published today as was David’s piece. The irony comes from David’s certainty that the Poling case means something in the greater scheme of vaccines/autism hypotheses. Once again, he makes the claim that her vaccines was a cause of her autism and once again he thinks this has a meaning to the science.

As my regular readers will note I have – with some frustration – been blogging the responses of some Mitochondrial heavy hitters in recent weeks. They don’t want to be unmasked on my blog but perhaps some of them are happier talking to the mainstream media.

In an article in Scientific American, Nikhil Swaminathan (whom I spent a couple of hours chatting to long distance recently) talks to Salvatore DiMauro who is perhaps the ‘heaviest hitter’ of them all when it comes to mitochondrial issues. He says:

the point mutation mentioned in Poling’s case history–published in the Journal of Child Neurology–would imply that both she and her mother carried the genetic variation in all their tissues. So, he says, “you would expect to see the same results” in both the mother and the daughter. But Poling’s mother, Terry, who is an attorney and a registered nurse, is not autistic.

That suggests the genetic defect responsible for Poling’s condition is part of her nuclear DNA, which is separate from the mitochondrial variety, says DiMauro. This means that, scientifically, from the documents presented in the vaccine court, the Polings did not make a case that deserved compensation.

And even more tellingly, John Shoffner who co-authored the case study paper on Hannah Poling had this say:

Shoffner notes that parents and advocates looking to impugn vaccines as triggers for autism—or mitochondrial disease—need direct, not just circumstantial, evidence. “If you were sitting in a waiting room full of people and one person suddenly fell ill or died or something,” he says, “would you arrest the person sitting right next to them?”

And then there is the killer quote:

Jon Poling, says Shoffner, has been “muddying the waters” with some of his comments. “There is no precedent for that type of thinking and no data for that type of thinking,” Shoffner says.

He’s absolutely right of course.

Jon Poling is in severe danger of becoming the new Andrew Wakefield. If I was going to be presumptuous enough to offer him advice I would urge him to take a step back and consider what he is doing. It is clear that he and his wife have been flirting with the vaccine hypotheses for a number of years. And now already his co-authors are disagreeing with him.

Meet the new boss, same as the old boss

8 Apr

I got email from Ginger Taylor today. She’d read one of my posts on the ongoing Poling/HHS scenario.

I wanted to make sure you had see this from the VICP table.

It is part of the description of what vaccine induced encephalopathy is:

(1) A significant change in mental status that is not medication related; specifically a confusional state, or a delirium, or a psychosis;
(2) A significantly decreased level of consciousness, which is independent of a seizure and cannot be attributed to the effects of medication; and
(3) A seizure associated with loss of consciousness.

(D) A “significantly decreased level of consciousness” is indicated by the presence of at least one of the following clinical signs for at least 24 hours or greater (see paragraphs (2)(I)(A) and (2)(I)(B) of this section for applicable timeframes):

(1) Decreased or absent response to environment (responds, if at all, only to loud voice or painful stimuli);
(2) Decreased or absent eye contact (does not fix gaze upon family members or other individuals); or
(3) Inconsistent or absent responses to external stimuli (does not recognize familiar people or things).

As a matter of fact, I _had_ seen the table. Why Ginger wanted me to read it again I’m not sure. It doesn’t add anything new to the list of symptoms that both the HHS document and the Case Report document and thus we’re still no nearer a diagnosis of autism.

Anyway, after that she carried on:

That is an exact description of what most of us observed in our children when they regressed. When I went into my peds office with my son hanging limp in my arms and not responding to external stimuli, with absent eye contact, and dramatic change in mental status and a very marked decreased level of consciousness, and told him it all started after his vaccines, he should have diagnosed him with encephalopathy. A medical condition, that my medical doctor was charged with diagnosing.

But pediatricians are not taught to look for vaccine injury. Only autism. Because no one is responsible for autism. So instead he sent him to a speech therapist and a psychologist that diagnosed him under a DSM IV code of autism. He passed the buck because if he had done his diagnostic job correctly, he would have indited himself and the vaccine program.

And my doctor was a good doctor. He was not a shlub.

He would’ve indicted the vaccine program for what? Indicating a known vaccine injury was present? Huh?

This to me is the crux of the title of my post – meet the old boss, same as the old boss. People such as Ginger are not interested in _autism_ . They are not interested in being advocates for _autism_ . What they want is either a recognition that their docs screwed up and diagnosed their kids with the wrong thing (this is fine by me. The sooner these people are off the autism communities back the better) or for autism itself to be redefined to meet their own children’s symptoms. This is not fine with me.

This is nothing new. Way back in 2001, Bernard et al published Autism: A Novel Form of Mercury Poisoning which attempted the same ‘trick’ as is being attempted here – redefine autism to meet your own beliefs rather than see if what you believe fits the already established facts. As we have all been witness to, time has not been kind to the thiomersal hypotheses. Neither has it been kind to the MMR hypotheses.

Anyway, Ginger carried on:

Things are changing VERY quickly Kevin. The atmosphere here is much different than from what i understand is happening in the UK. Major networks are not ready to report on it yet, but they are listening to us now. Calling and asking questions even. Main stream docs were talking to me about integrating DAN methods into their practices before the AAP’s announcement last week. All of the sudden parents are getting their phone calls returned very quickly from sources that have blown them off for a long time. And I can’t keep up with my email.

I thought this would be a decade or more of fighting all this, but it looks to be more like the cascade of events when the Soviet Union fell. It is gaining speed. The Polings were the first major crack in the dam and now huge chunks are coming out faster and faster.

Kirby was right, the debate is over.

I had a quick grin at the sheer arrogance of comparing the autism/vaccine hypotheses to the collapse of communism in the old Soviet block but really, this again is nothing new. If I had a pound for every time someone had posted on here that ‘this is it, its all over’ I’d be richer by a fair few pounds. Of course, they always come to nothing.

The devil is in the details. And in the science. Mito connections to autism are nothing new. Attempts to ‘talk up’ and muddy the wide picture whilst failing to look at the details are nothing new. The media talking to people is hardly anything new (I had an interview myself recently and have had several in the past). Attempting to twist autism away from what is already known about it into something new to make it fit into yet another set of beliefs is not new.

I’ll say it again as I have before. Its a very exciting time for the media and bloggers as we have lots of cool stuff to talk about. However, none of that stuff is new science. And when it comes to vaccines causing autism that’s what is needed. Science.

David Kirby is right (and wrong)

6 Apr

David Kirby has an excellent title for his blog post: ‘CDC Has Lost Control of the Autism Argument’.

I happen to to think he is 100% gold-plated correct. In fact I would go even further than that – the CDC, the FDA and the AAP have become, on this issue, little short of a laughing stock. They have bungled, mismanaged, failed to address and not known how to retort at just above every step of the process.

Controversially perhaps I think a lot of it has to do with the bureaucratic nature of these monoliths – they need to reform their way of working. They’re slow and outdated in their PR and media handling. That is not to say that the people working within these systems are terrible useless people – clearly they are not – but they operate within a system that cannot seem to effectively communicate the scientific truth behind the various vaccine hypotheses.

And now we truly _do_ have various vaccine hypotheses. Once it was ‘….nothing more than mercury poisoning.’. Then it was the MMR too. Then it was a combination of both. Then it wasn’t _just_ mercury in vaccines it was all the other ingredients too.

Now we have another twist: the mito/autism/vaccine hypothesis which I have no doubt has sent scores of parents all over the Western world forking out for yet another set of tests and will no doubt prompt yet another set of questionable treatments repackaged and rebranded for autism.

I think its worth while remembering at this point that, despite the furore over the last few weeks, one thing has not changed: *the science* .

All the talk shows and Larry King appearances and cloak and dagger leaked reports are all very exciting and good blogger fodder for people like me and David but the bottom line is this: no new science has been added to the equation regarding any vaccine/autism hypothesis. So, when I read the Larry King transcript and saw David snapping ‘the debate is over!’ I raised an eyebrow as I couldn’t recall any new science being brought along that night (or any other night) that had caused the debate to be over.

Anyway, back to David’s HuffPo entry. Now, I’ve swapped very courteous emails with David Kirby and whilst I have also posted quite angrily about him too I think he cares about people. Which is why when I read a paragraph such as the following I get perplexed. Here’s David:

A recent government decision to award nine-year-old Hannah Poling taxpayer dollars for her multiple vaccine-induced autism, has left parents anxious and alarmed….

A recent government decision. Hmm. Lets see what the Special Masters who are overseeing the Autism Omnibus (of whom Hannah Polings case was until recently a part of) said:

….reports have erroneously stated that the Office of the Special Masters has recently issued a “decision,” “opinion,” or “ruling” concerning the issue of whether a Vaccine Act claimant’s autism symptoms were caused by one or more vaccinations. The OSM has not issued any such decision, ruling or opinion.

No decision.

And David Kirby also refers to Hannah Poling’s ‘multiple vaccine-induced autism’. Lets see what the OSM says:

this court has issued no decision on the issue of vaccine causation of autism

But maybe by ‘government’ David means the HHS? Not the courts? If thats so, can David – or anyone else – point out to me where in any HHS statement they note that have decided to award Hannah Poling money for ‘vaccine-induced autism’?

Or maybe David means someone else when he refers to ‘government’?

And lets also be clear. Not only has the OSM _nor_ the HHS referred to ‘vaccine-induced autism’, neither has any aspect of the medical literature written about Hannah Poling (or any other claimant).

So yes, I find David’s over-exuberance perplexing on occasion. I am also concerned that paragraphs such as the above are muddying waters that need to be crystal clear right now. We serve no one by misleading them either intentionally or not.

Jenny McCarthy on Larry King Live

3 Apr

Well, she’s just an actress…and unfortunately, we place too much value on the opinions of actors in this country.

~ Erik Nanstiel, Feb 2006

Now Erik was discussing Sigourney Weaver (the future Mrs Leitch if she ever stops stalking me) and her role in Snowcake but I thought it might serve as an interesting comparison for how another actress, Jenny McCarthy, is currently viewed.

In point of fact, I entirely agree with Erik, we _do_ place far too much importance on what acctresses and actors say. For example, on Larry King Live last night jenny McCarthy spoke quite a lot but didn’t actually _say_ much at all.

For example:

It’s a global epidemic…

Really? Where is the science that supports that position? Because there is an _awful_ lot of evidence that entirely refutes it.

I went online and I found a community called Defeat Autism Now……I believed enough — even though my pediatrician at the time said it’s all bull — and followed this treatment and my son got better

Yeah, that and all the ABA, and the Indigo/Crystal beliefs:

The day I found out I was an adult Indigo will stay with me forever. I was walking hand in hand with my son down a Los Angeles street when this women approached me and said, “You’re an Indigo and your son is a Crystal.” I immediately replied, “Yes!” and the woman smiled at me and walked away. I stood there for a moment, because I had no idea what the heck an Indigo and Crystal was, but I seemed so sure of it when I had blurted out “Yes!” After doing some of my own research on the word Indigo, I realized not only was I an early Indigo but my son was in fact a Crystal child.

A what?

The Indigo child concept was first publicized in 1999 by the book The Indigo Children: The New Kids Have Arrived, written by the husband-and-wife team of Lee Carroll and Jan Tober. Carroll insists that the concept was obtained via conversations with a spiritual entity known as Kryon.

Wikipedia

Except, the website that carries all her beliefs has been quietly vanished. If you want to find this info now, you have to look in Google Cache.

Onwards,

I’m not, nor is the autism community, anti-vaccine. We’re anti-toxin and we’re anti-schedule.

The autism community? Who _is_ this woman with the ego to think she speaks for the entire autism community? Good grief. And as for the section of the community she speaks for not being anti-vaccine? Try these on Jenny:

!http://www.kevinleitch.co.uk/images/eoh/PowerOfTruthRallySign.jpg!
!http://www.autismrally.com/IMG_5365.jpg!
!http://www.autismrally.com/IMG_5426.jpg!

All taken from the sort of rally you’re promoting later on in the show.


JM:

And isn’t it ironic, in 1983 there was 10 shots and now there’s 36 and the rise of autism happened at the same time?

Ironic like this?

No, its not ironic. Its another example of correlation not implying causation – you can see another graphic example on the ‘canards’ page of this very website.

JM:

I believe that parents’ anecdotal information is science-based information

Yeah. Its not.

JM:

environmental toxins play a role. Viruses play a role. Those are all triggers. But vaccines play the largest role right now

No evidence of any kind was presented to back this up. Later on McCarthy sneered at the AAP for talking about studies that weren’t ‘independent’ (what she meant by that is anyone’s guess) but in short succession she said that parental anecdote was good science and that vaccines play ‘the largest’ role in causing autism.

David Kirby was sitting right next to McCarthy and yet neither of them mentioned his HuffPo entry in which said:

And, if 20% of autism cases are mito related, and 6% of those cases regressed because of vaccines, that would mean that at least 1% of all autism cases were vaccine related.

1%.

Lets compare that to the approximately 40% already genetically accounted for. I don’t think its difficult to process which is the larger number.

And after that Dear Reader I simply can’t carry on ploughing through the rest of McCarthy’s contributions. They range from the offensive to the inane.

But here’s an offer for Ms McCarthy – and David, I know you’re a reader so feel free to pass this on:

Come and pay my family and me a visit Ms McCarthy. Just you and maybe your son – no media, no journos, no cameras, no Hollywood bullshit. You and I can have a proper well mannered debate whilst our kids play and see if we still feel the same afterwards. What about it? Got the balls?

Paul Offit causes a stir

1 Apr

On 31st March, Dr Paul Offit wrote an op-ed piece for the New York Times entitled Inoculated Against Facts in which he discussed the recent Poling situation.

In response to this, David Kirby wrote a blistering response entitled Lies My New York Times Told Me (Or, Why Trust a Doctor Who Says 10,000 Shots Are Safe?).

Offit says:

An expert who testified in court on the Polings’ behalf claimed that the five vaccines had stressed Hannah’s already weakened cells, worsening her disorder. Without holding a hearing on the matter, the court conceded that the claim was biologically plausible.

To which Kirby responded:

no one “testified in court” in this case, as confusingly stated by Dr. Offit, who also writes that, “Without holding a hearing… the court conceded.”

My take on what Offit said was that any document submitted as part of a legal process must, by definition, form part of a courts records and thus be considered testimony. I think there’s a difference between ‘heard in court’ (heard as part of a legal proceeding) and ‘a hearing’ (discussed in open court)

Kirby also says:

It was a medical concession, not a legal decision. Dr. Offit and the New York Times know this.

Its also (as I understand it) part of the process that the Special Master could’ve refused to accept the so-called concession. This makes the fact they did a legal decision. The Poling’s could’ve elected to have their daughters case heard in a civil court (I think) in which case they really would’ve been held to a medical/scientific standard of proof. They chose not to do so.

Kirby goes on:

This statement, too, is misleading: “Even five vaccines at once would not place an unusually high burden on a child’s immune system.”……Hannah received five shots, but nine vaccines.

Which, to be fair to Dr Offit is exactly what he said:

In 2000, when Hannah was 19 months old, she received five shots against nine infectious diseases.

I think this is merely a semantic misunderstanding as to what constitutes ‘one’ vaccine.

Kirby goes on:

More importantly, Dr. Offit’s statement contradicts the second HHS concession (for epilepsy) in the Poling case, to wit:

The cause for autistic encephalopathy in Hannah “was underlying mitochondrial dysfunction, exacerbated by vaccine-induced fever and immune stimulation that exceeded metabolic reserves.”

Now, lets be honest – nobody aside from David Kirby has actually _seen_ this second HHS ‘concession’. I can’t help but note that the part that Mr Kirby quotes from this second report does not contain the phrase ‘autistic encephalopathy’ (and what exactly _is_ ‘autistic encephalopathy’?). I also think its a little unfair to expect Dr Offit to be a mind reader and know what an unreleased report says.

I further think that in a piece that asks why we should just trust, Mr Kirby (with all due respect to him) asking us to do the exact same thing is a little incongruous.

We really need this issue sorted out by either releasing this document that directly ties a diagnosis of autism _directly_ to vaccines, or by applying the same rules to everyone.

Mr Kirby then goes on to challenge Dr Offits most (in)famous statement:

“Our analysis shows that infants have the theoretical capacity to respond to about 10,000 vaccines at once”

This is slightly disingenuous as this really has no bearing whatsoever on the Poling case. Its also – as stated by Dr Offit – a _theoretical_ scenario. No one is seriously suggesting any infant has 10,000 shots. The paper from Dr Offit used this calculation to respond to the idea that vaccines can overwhelm the immune system.

And lets be clear. This is science. Good science. To the best of my knowledge no-one has refuted it in any reputable journal. If anyone has an issue with the overall idea (vaccines not overwhelming the immune system) or the maths involved, then they should submit it to a reputable journal for peer review.

However, one of the most disturbing aspects of this turn of events is the response to Dr Offit’s piece on the EoH Yahoo Group. I should note that David Kirby has _no control or ownership of this group_ before I continue.

Within a few hours of Dr Offit’s piece being published, Ginger Taylor took it upon herself to send Dr Offit’s phone number to the EoH group at large, as part of an email conversation she had had with Dr Offit. Thus drew a number of responses from her list mates such as:

Oh no….. His phone number on EOH? Lord help him!

Quite. Although the group moderator was quick to ask people not to harass Dr Offit, he stopped short of deleting this very ill-considered post.

Lets not forget that Dr Offit (and his children) have been the subject of severe harassment from those who believe in an autism/vaccine hypothesis:

….as Paul Offit, a vaccine expert who served on the committee, tried to make his way through the crowd, one of the protestors screamed at him through a megaphone: “The devil—it’s the devil!” One protester held a sign that read “TERRORIST” with a photo of Offit’s face. Just before Offit reached the door, a man dressed in a prison uniform grabbed Offit’s jacket. “It was harrowing,” Offit recalls.

….

He has since received hundreds of malicious and threatening emails, letters and phone calls accusing him of poisoning children and “selling out” to pharmaceutical companies. One phone caller listed the names of Offit’s two young children and the name of their school. One email contained a death threat—”I will hang you by your neck until you’re dead”—that Offit reported to federal investigators.

Knowing this, why Taylor saw fit to do this at all is puzzling. However, when she was asked how she felt about communicating with Dr Offit, she also saw fit to comment:

The whole thing actually creeped me out and I just dropped it.

My personal opinion is that a considered reply from Dr Offit to Taylor which included a friendly invitation to contact him again is not creepy at all. What _is_ creepy (to me) is publishing the phone number of a man who has been subject to vicious abuse – as have his children. To me, it is irresponsible in the extreme.

The Next Big Autism Bomb?

28 Mar

Over on the Huffington Post, David Kirby has posted about The Next Big Autism Bomb. Its a very long post so take a sammich.

The gist (with apologies to Mr Kirby) of it is that there was a conference call to discuss the autism/mito issues:

On Tuesday, March 11, a conference call was held between vaccine safety officials at the US Centers for Disease Control and Prevention, several leading experts in vaccine safety research, and executives from America’s Health Insurance Plans, (the HMO trade association) to discuss childhood mitochondrial dysfunction and its potential link to autism and vaccines.

The purpose of the call was:

“We need to find out if there is credible evidence, theoretically, to support the idea that childhood mitochondrial dysfunction might regress into autism,” one of the callers reportedly told participants.

To that end, Mr Kirby mentions four studies throughout the rest of his piece. Three are accessible but the fourth is a total mystery. This is unfortunate as it is this fourth one which the majority of his blog post relies upon for its conclusions.

The first three are discussing what the prevalence of mito _within_ autism might be. Kirby states:

CDC officials were made aware of a Portuguese study, published last October, which reported that 7.2% of children with autism had confirmed mitochondrial disorders. The authors also noted that, “a diversity of associated medical conditions was documented in 20%, with an unexpectedly high rate of mitochondrial respiratory chain disorders.”

There is a slight point of confusion to clear up here. The figure of 7.2% is from a 2005 study ‘Mitochondrial dysfunction in autism spectrum disorders: a population-based study‘.

The study (by the same author) that Kirby mentions as being published last October is ‘Epidemiology of autism spectrum disorder in Portugal: prevalence, clinical
characterization, and medical conditions‘ declares a 4.1% figure.

The reason for this is that the lead author re-examined his data from the 2005 study and adjusted it downwards in the 2007 study. So Kirby is not correct to state that the authors believe that the rate is 7.2%. The latest figure from these authors is 4.1%.

The third study that discusses prevalence is referenced by Kirby as:

They also know that some reports estimate the rate of mitochondrial dysfunction in autism to be 20% or more. And the rate among children with the regressive sub-type of autism is likely higher still.

Kirby links to a web page that is the web interface to a mail list.

Upon searching for this paper I couldn’t find it anywhere. It is not in PubMed or Google Scholar and in fact I can only find three references to it online at all.

It since transpires that this paper is not in fact a paper at all and has not been published anywhere. It is in fact a summary for attendees of a 2003 LADDERS conference in Boston, USA. Therefore it has not been subject to any kind of peer review. That’s not to say the figure is wrong, merely that it hasn’t been verified or undergone any kind of the usual scientific checks and balances a published piece of work must undertake to ensure quality.

Its also been explained to me that the percentage of “mitochondrial autism” reported by any group will vary with the percentage of regressive autism in their ASD population. So it is not true that the summary states a differential between autism and regressive autism. Rather that “mitochondrial autism” exists _within_ regressive autism.

And so we move on to the fourth study.

One doctor reported his findings from a five-year study of children with autism, who also showed clinical markers for impaired cellular energy, due to mild dysfunction of their mitochondria.

The biochemistry of 30 children was studied intensively, and in each case, the results showed the same abnormalities as those found in Hannah Poling, participants said. Each child had moderate elevations or imbalances in the exact same amino acids and liver enzymes as Hannah Poling.

All thirty children also displayed normal, healthy development until about 18-24 months of age, when they quickly regressed into clinically diagnosed autism (and not merely “features of autism”), following some type of unusual trigger, or stress, placed on their immune system.

……….

But what causes the stress? That is a very big question.

Apparently, in only two of the 30 cases, or 6%, could the regression be traced directly and temporally to immunizations, and one of them was Hannah Poling. In the other cases, there was reportedly some type of documented, fever-inducing viral infection that occurred within seven days of the onset of brain injury symptoms.

Mr Kirby makes this study the raison d’etre of the rest of his post.

I have some major concerns about this. Who is this doctor? What is this study? Where is it published? Where can we _read for ourselves_ what this study says? Without wishing to question the honesty with which Mr Kirby is posting, its obvious that – even in this post as I discuss above – errors and misinterpretations have crept in.

Lets be honest here. These are some *major* claims being made. Firstly that all 30 kids in the study regressed into clinically diagnosed autism as opposed to features of autism. All 30? That’s incredible.

Secondly that 6% of the regressions into clinically diagnosed autism are traced directly from immunisations. That’s big. That is about as big as it gets. I would really like to see this study.

I have asked (twice) in the comments section of Mr Kirby’s post to be pointed to this study. So far, no answer has been forthcoming from anybody.

However. I note that Mr Kirby states that one of the 6% is Hannah Poling. If this is so then it is not true to say that:

the…[autistic]…regression…[can]… be traced directly and temporally to immunizations

(insertions mine for clarity).

As I’ve discussed before, none of the listed symptoms attributed to immunisations can accumulate to a diagnosis of autism. So unless we can actually see this study, know who the author, see what checks and balances this paper has undergone, we’re in a bit of a limbo.

← Older Entries
Newer Entries →