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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.

Dear CDC

26 Mar

I read with interest Dr Schuchat’s opinion piece in the AJC today.

Whilst it is gratifying to see someone of Dr Schuchat’s calibre responding to previous claims regarding vaccines in autism I would like to make a few points to Dr Schuchat and the CDC in general.

Firstly, this level of response is around eight years too late. What have you been doing on the media/PR front over the last eight years? I’ll tell you what your ‘opponents’ have been doing – they’ve been conducting protests outside your offices, outside the offices of the AAP etc. They’ve been setting up and organising vaccine/autism groups and heavily marketing them via the use of organic and paid for web based advertising.

The only people who have made any kind of attempt to counter these groups and the misinformation (deliberate or not) they publish is people like myself. I am not attempting to aggrandise myself at all. I am attempting to convey to you how one sided the ‘battle’ has been over the last few years.

Where were you? You were needed. You could’ve helped. Instead you sat back and hoped this would all go away. It didn’t. It won’t.

Secondly, the level of Dr Schuchat’s response is very close to condescending. Simply stating that:

Kirby’s column included many inaccuracies related to childhood vaccines. As such, it illustrates that when it comes to immunizations, child development and specific medical conditions, the best source of guidance is the child’s health care provider.

is patronising in the extreme. The level and quality of the debate has moved on in the last eight years. Bland assurances won’t cut it. You need to be specific and offer evidence. Autistic people, parents of autistic people and interested professionals are smart enough to know and understand a certain level of science these days.

Don’t be shy about providing people with science. You have some truly excellent science on ‘your side’ as I and others have attempted to blog about in the last five years to no small effect. For example, Googling mmr autism displays, amongst others, the blog of a friend of mine – also the parent of an autistic child and also convinced of the need to blog about the bad science surrounding the various vaccine/autism hypotheses. Googling thiomersal autism brings up _this_ blog. We’re doing your job for you!

You’re being left behind in this debate. Its time you caught up.

Statement on autism, vaccines and mitochondrial disease

22 Mar

The following was posted on the blog of the Mitochondrial Disease Action Committee yesterday.

The recent headlines concerning the potential links between autism, mitochondrial diseases, and vaccinations are evidence of the need for better understanding about mitochondrial disease. It is conservatively estimated that one in 4000 individuals are affected by mitochondrial disease, although specialists agree that the disease is under-recognized in the general population. The presentations and severity of symptoms of mitochondrial disorders clinically vary and affect both adults and children.

Vaccinations are critical in protecting the health of our children. All children, even those with suspected or known mitochondrial diseases, should receive the recommended vaccinations. The risks of these communicable illnesses outweigh the risk of vaccine-related reactions. Any causal relationship of thimerisol to incidence of autism has been disproven by observing the incidence of autism before and after eliminating this form of mercury from the vaccines. MitoAction encourages parents to talk to their pediatrician about these concerns.

David Holtzman, MD, PhD, a Pediatric Neurologist at Massachusetts General Hospital in Boston, MA, notes, “Mitochondrial Disease may present with the clinical features of Autism Spectrum Disorders (ASD). Several recent studies have documented biochemical evidence of abnormal mitochondrial functions in at least 30% of children with ASD.”

Awareness and attention to mitochondrial disorders will bring greater understanding of the impact of environmental and physiologic stressors on both autism and mitochondrial disease. Further research may explain how autism can be an expression of mitochondrial diseases and could be prevented.

Autism vs features of autism

14 Mar

In sum, DVIC has concluded that the facts of this case meet the statutory criteria for demonstrating that the vaccinations CHILD received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder, which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of autism spectrum disorder.

– HHS

If one has the right set of “features” of autism, one has autism……Hannah Poling has autism — as defined in every book, in every library, in every university in the world. Dr. Parikh’s insistence otherwise is perplexing.

– David Kirby, to EoH group in response to Dr. Parikh’s article in Salon.

Its a massively ambiguous point. Do ‘features of autism’ equate to a _diagnosis_ of autism? David Kirby and some commenter’s to this site say ‘yes’. I personally think ‘no’.

But I think we need to be clear here. In this particular case, Hannah Poling can still be autistic but the HHS are arguing (in my opinion) that the features listed as those being aggravated/caused by vaccines do not add up to enough by themselves to give a diagnosis of autism.

To illustrate this idea, I went through the symptoms given by Dr Zimmerman that he put forward as being vaccine aggravated in a previous post (green = hit with DSM (IV), red = miss):

1) Loss of previously acquired language
2) Eye Contact
3) Relatedness
4) disruption in CHILD’s sleep patterns,
5) Persistent screaming
6) Arching
7) the development of pica to foreign objects,
8) loose stools
9) CHILD watched the fluorescent lights repeatedly during the examination

So, three of the symptoms given by Dr Zimmerman as being vaccine aggravated can be matched with the DSM (IV). This is way below what is needed for a diagnosis of autism.

But, we cannot discount the idea that she _could be_ autistic. To me, it seems likely that here is an autistic child who has her vaccines and who presents with nine symptoms following those vaccines, three of which tally with DSM (IV) criteria.

This presents two questions. First, is there a difference made by autism diagnosticians about autistic features vs a diagnosis of autism?

The best way to answer this is to ask autism diagnosticians. I wrote to some autism diagnosticians. They asked to remain anonymous, which I have to respect. The email I sent in essence asked them if they thought that:

a) ‘with features of autism spectrum disorder’ is directly equivalent to a diagnosis of autism?
b) ‘with features of autism spectrum disorder’ means that some elements of the DSM (IV) are present but not enough to diagnose autism?
c) ‘with features of autism spectrum disorder’ means that some elements of the DSM (IV) are present but not enough to diagnose ASD?
d) ‘with features of autism spectrum disorder’ means something else entirely?

The responses I got back stated that b) was most likely, maybe c) .

So according to these autism diagnosticians, some elements of the DSM (IV) are present but not enough to diagnose autism, or possibly ASD. This tallies with my own personal opinion.

The second question is; did Hannah Poling present with any diagnosable symptoms of autism _before_ her vaccines? Sadly, it seems we will never accurately know the answer to this question. The Poling’s will say no of course. David Kirby et al will say no of course.

I will remember the Cedillo’s however, who testified that their daughter (who they claimed was made autistic by vaccines) showed no symptoms of autism before her vaccines were administered. However, when home movies of their daughter taken before her vaccines were shown to several diagnosticians, they testified that she was indeed exhibiting symptoms of autism prior to vaccine administration. The Cedillo’s didn’t lie. Its simply not possible to remain clinically objective about one’s own child. Even for an employee of Johns Hopkins, it is not possible to remain objective about one’s own child.

That doesn’t mean Hannah Poling _did_ exhibit symptoms of autism prior to vaccines of course. It simply means that we need to be skeptical of the claim that she didn’t.

Is Hannah Poling autistic? Could be. Seems likely.

Did the vaccines cause the nine symptoms Dr Zimmerman found? HHS ‘concede’ they did.

Do the fact that three of those nine symptoms tally with the DSM (IV) mean that the vaccines are the cause of her autism? No, thats not logical.

Hannah Poling – Fine Points of the Law

11 Mar

The person answering the questions below is someone very familiar with the Vaccine Courts. I agreed to respect their privacy by not naming them but for ease of reference I’ll refer to them as Legal Larry.

David Kirby says:

In this case, HHS agreed to pay out compensation and there was no need to go to a hearing. The Polings could not reject the compensation agreement and insist on a hearing if they wanted to. This was supposed to be a test case. But the government did not want this to go to a hearing, not the Polings. But the family had no choice. Someone please correct me if I am wrong, but when you apply for VICP compensation, and you receive it, it’s pretty much take-it-or-leave-it at that point, very much unlike a regular civil lawsuit that might get a settlement “offer.”

Legal Larry says:

….I have seen the misunderstanding circulating. It appears to flow from an unfamiliarity with litigation. Vaccine litigation under this program really is no different than traditional litigation. Simple example: you accuse me of breaking your fence; I contest. You sue me since I disagree with your charge. As plaintiff, you have the burden of providing sufficient evidence for your case to proceed. You provide pictures of my tractor after rolling into your fence. I review those pictures and say “you are right.” I CONCEDE my liability to you. No trial is necessary, there is nothing to try. You have to accept my concession, or drop your claim against me (logically you cannot contest my concession without contesting the very basis for your filing your claim). Now, we have to resolve the damages. You ask for $1000, but after reviewing the damages I offer you $200. If you accept my offer (or we negotiate a different amount,say $500) we have SETTLED the case and it ends. If you reject my offer and we can’t agree on another number, the case proceeds to trial and the court will determine the amount. Apply the above to the Polling matter. *People are using concession and settlement synonomously and thus incorrectly*. I hope this helps.

Legal Larry was asked:

when you state ” If you reject my offer and we can’t agree on another number, the case proceeds to trial and the court will determine the amount. ” does “proceeds to trial” mean that it goes through the full trial procedure or does it mean that the awards phase is determined at trial?”

To which Legal Larry answered:

….just the awards phase, the concession eliminates the issue of liability – I conceded that I damaged your fence.

So, from that exchange we can see that David Kirby is half right. Within the context of the Omnibus, the Polings could not reject the ‘concession’. However, they could have rejected the settlement offer and gone on to a trial procedure to determine the final award. We can also see that concession and settlement are not the same thing at all.

But now we get to some murkier ground (who knew the autism community would have to become lay-person briefs as well as lay-person scientists eh?) because the fact is that the Poling’s could easily have rejected the whole damn thing. Sullivan on GM/WM did some work on this:

Now, what happens if they decline? They can file in Civil court.

Why does that matter? Well, consider the fire and brimstone from David Kirby:

Someone please correct me if I am wrong, but when you apply for VICP compensation, and you receive it, it’s pretty much take-it-or-leave-it at that point, very much unlike a regular civil lawsuit that might get a settlement “offer.”

I think you may be wrong Mr Kirby. They could’ve left it and gone for a Civil court action.

The Polings could not reject the compensation agreement and insist on a hearing if they wanted to.

Yes, they could have, See above.

And if anyone asks you why the family attorneys agreed to settle the Poling case, tell them they don’t know the first thing about Vaccine Court.

The issue is, I think that because people such as myself are suspiciously asking why the Poling’s agreed to the concession at all if they felt they had such a water-tight case. If they’re right then this case could’ve been the very first court case to ever establish vaccines are complicit in autism. The argument Kirby is putting forward is not correct. *The Poling’s could have rejected the claim and fought their case in trial* .

Why didn’t they?

Now let me be absolutely honest. If I was them, neither would I. Civil Courts require a scientific standard of proof. The Vaccine Court does not. In other words, the Poling claim in a Civil Court would’ve rested on _science_ .

I’ll be even more honest, I am happy to think of Hannah Poling have enough money to take care of her her whole life. This is one of the ethical conundrums of the Omnibus hearings for me. If it were up to me I’d like to see all 4,800 kids get enough money to assure their futures.

But is this the right way? The Poling’s could easily have rejected the ‘concession’ and gone to a Civil Court. They have elected not to. Over the last week there has been lots of breathless talk about fat ladies singing but by agreeing to the ‘concession’ that is absolutely the last thing the Poling’s have helped bring about. They have agreed to a statement that states that their daughter’s autism was not caused by vaccines. If they think it does, they should have gone to a Civil Court.

Again, I ask, why didn’t they?

Evidence of Misinformation

7 Mar

This entry is once again guest blogged by SL. I’d like to thank SL once again for providing clarity on a massively complex issue.

I’m going to try and break down some of Kirby’s most confusing points he makes with regard to autism and mitochondrial disease. He is misleading, irresponsibly selling falsehoods and half-truths as fact. As Jon has pointed out on LB/RB, his math is way off at times. I’ve spent hours reviewing scientific studies, and hopefully can further clear up any confusion Kirby may have created.

Evidence of Misinformation # 1

Mitochondrial disorders are now thought to be the most common disease associated with ASD.

Well, it took some digging, but I found where Mr. Kirby came up with this one-liner. You will find a similar (yet, not really what he says) statement in here:

A minority of cases of autism has been associated with several different organic conditions, including bioenergetic metabolism deficiency. In a population-based study, we screened associated medical conditions in a group of 120 children with autism (current age range 11y 5mo to 14y 4mo, mean age 12y 11mo [SD 9.6mo], male:female ratio 2.9:1). Children were diagnosed using Diagnostic and Statistical Manual of Mental Disorders criteria, the Autism Diagnostic Interview – Revised, and the Childhood Autism Rating Scale; 76% were diagnosed with typical autism and 24% with atypical autism. Cognitive functional level was assessed with the Griffiths scale and the Wechsler Intelligence Scale for Children and was in the normal range in 17%. Epilepsy was present in 19 patients. Plasma lactate levels were measured in 69 patients, and in 14 we found hyperlactacidemia. Five of 11 patients studied were classified with definite mitochondrial respiratory chain disorder, suggesting that this might be one of the most common disorders associated with autism (5 of 69; 7.2%) and warranting further investigation.

That last line sounds vaguely familiar right? Except, Kirby sold it as truth. Whereas in the study, it is presented as a thesis to be proved later on. A suggestion, a possible link, warranting further investigations. That’s much different from Kirby’s statement of fact, that mito *IS* the most common disease associated with ASD. Also, this study presents us with a figure of 7.2%, we’ll need this number later on.

Now, perhaps I’m wrong here. Maybe Kirby is getting his information elsewhere. So, then, what are his sources? Does a study exist which compares children with autism or autistic features who also have mito vs. those who also have other genetic disorders? How do those numbers compare? With the myriad of genetic disorders, I’d be highly interested in this. There’s a reason why so little is known about mito: it is a RARE disease. Has Kirby seen additional studies? Can he offer us large numbers of autistic children, being shown to have mitochondrial disorder too? No, he has one court case that he is referencing. He is using made-up figures and for some reason, fantasizes about autistic children having a mitochondrial disease.

I did find a few actual studies that I can reference. And, none state that mitochondrial disease is the most common disease associated with autism. I wonder about the Autism Genome Project Consortium’s study study with the strong link to Chromosome 11. Or the review by the Autism Research Unit UK, pointing to gastrointestinal problems, viral illnesses, and genetic disorders as factors in autism.

This study shows that “several metabolic defects have been associated with autistic symptoms with a rate higher than that found in the general population.” This essentially argues the opposite of what Kirby states. There are more autistic symptoms seen in some people with metabolic disorders than compared to the rest of the population. If I have Group A (General Population) and Group B (persons with metabolic disorders), according to this study, Group B will have more more people with autistic symptoms. This does not say that within a group of autistic individuals, metabolic disorders are most prevalent. Also, the study says “autistic symptoms” which is not the same as autism. Children with gastrointestinal dysfunction, seizures, etc. associated with a metabolic disorder could very likely appear to have “autistic symptoms.”

Another factor to consider is proper diagnosis (ruling out autistic features being secondary to a disease, vs. being true autism), and that any child presenting with autism or autistic features, should be screened properly. It is reasonable to rule out certain genetic and psychological disorders, such as those mentioned here. Equally important, with regard to mitochondrial disorders, is how samples are taken and tested. If someone unfamiliar with mitochondrial diseases, or a lab is improperly equipped, you may get inaccurate results. Also, because someone has “markers” for a disorder, that does not mean they definitively have that disorder or disease. In the majority of cases, an autistic child does not have a primary disorder, such as mito.

Evidence of Misinformation #2:

Some journal articles and other analyses have estimated that 10% to 20% of all autism cases may involve mitochondrial disorders, which would make them one thousand times more common among people with ASD than the general population.

Again, Kirby uses the same language to try and make his point. The words “some” and “other” should be the first red flags you see. What journal articles? What “other analyses” can be cited? It would be so very helpful if he would document where he gets the 10-20% figure from. This would be of great help, and would further this discussion. If he has real sources, scientific studies, any type of evidence of this, share it. I am not entirely against the idea that 10-20% of autistic individuals who have had a true regression, also have mitochondrial disease. I said it in a previous post – if a child has a well-documented, real regression, other things should be looked into (like mito, genetic disorders, etc.).

Remember that 7.2%? That is the only figure I was able to find in regards to the prevalence of mitochondrial disease in children diagnosed with autism. It is from the study I have posted above. 7.2% seems rather high, and certainly many more studies would need to be done to come to a more accurate figure. Another concern is the methods in which these children were diagnosed (i.e. tissue biopsy). Regardless, 20% is quite a jump from a documented 7.2%.

Here are some real numbers regarding mitochondrial disease, as well as autism. From the Cleveland Clinic:

About one in 4,000 children in the United States will develop mitochondrial disease by the age of 10 years. One thousand to 4,000 children per year in the United Sates are born with a type of mitochondrial disease.

According to The Mitochondrial and Metabolic Disease Center (at UCSD):

Four million children are born in the US each year. This means that 1000 to 4000 children will be born each year with mitochondrial disease. By comparison, about 8000 new cases of childhood cancer are reported each year. Both mitochondrial disease and childhood cancer range in mortality from 1O to 50 percent per year, depending on the specific disease.

Going with the CDC’s 1 in 150 figure and Cleveland Clinic’s 4 million births per year, we can pull some more numbers from Kirby’s 10-20% theory. Currently, there are 1000 – 4000 children born with mito each year, or 0.03-0.10% of all births. Compare that to 26,670 (or 0.67%) estimated number of autistic individuals born in a year. If 10% of autistic children have mito, that means 2,667 additional children would be born with mito. At 15%, you have an extra 4000, at 20% an total of 5,333 more children would be born with mito. The likelihood of mito then increases up to 0.23%. That’s a substantial increase in cases of mitochondrial disease. And they portray autism as an epidemic?

And, speaking of the so-called “Autism crisis,” Kirby’s idea that 10-20% of autistics really have mitochondrial disease changes the rate of autism quite a bit. Autism figures would start to look more like 1 in 187. If indeed, 10-20% of autistics (2,667 – 5,333) truly do end up having mito, what would be the advice to those families with regard to vaccines? Who will be held accountable when families who have mitochondrial disease are devastated to find out how vital those vaccines are to their children?

Is Kirby also aware that in some families with mitochondrial disease, children can be affected to varying degrees? The argument may be that this “autism-mito” group is “less-affected” by the disease. Well, their siblings, including those born in the future, could be born with more severe forms of the disease. People have led countless numbers of families to forgo their vaccinations. What would be suggested when a family who only vaccinated their eldest (autistic) child, has 2 more children, both of which have more severe forms of mitochondrial disease? What would be said if one of those children died after being infected by a disease that could of been prevented had the family been properly vaccinated?

Evidence of Misinformation #3:

Another article, published in the Journal of Child Neurology and co-authored by Dr. Zimmerman, showed that 38% of Kennedy Krieger Institute autism patients studied had one marker for impaired oxidative phosphorylation, and 47% had a second marker.

Below is the actual report from the study. This is the study that Dr. Poling also co-authored, interestingly enough. I assume he prompted this study, following his findings with his own child. I assume the girl in the case is in fact, his own daughter [It is – KL](test results are the same).

To determine the frequency of routine laboratory abnormalities in similar patients, we performed a retrospective study including 159 patients with autism (Diagnostic and Statistical Manual of Mental Disorders-IV and Childhood Autism Rating Scale) not previously diagnosed with metabolic disorders and 94 age-matched controls with other neurologic disorders. Aspartate aminotransferase was elevated in 38% of patients with autism compared with 15% of controls (P < .0001). The serum creatine kinase level also was abnormally elevated in 22 (47%) of 47 patients with autism. These data suggest that further metabolic evaluation is indicated in autistic patients and that defects of oxidative phosphorylation might be prevalent. (J Child Neuro 2006;21:170—172; DOI 10.2310/7010.2006.00032).

Kirby leads you to believe that both figures (38 & 47%) come from the same total of participants. It does not. The 38% is from the total of the group of 159. The 47% comes from a smaller group (subset, perhaps?), consisting of 47 patients. Kirby presents this information in such a way, that someone not willing to look at the numbers, would assume that nearly half of the autistic children in this study have mitochondrial disease. This is not the case.

Interesting to note:
Creatine Kinase (CPK) can also be a marker for for heart attack, hypothyroidism, and several other diseases.
Aspartate aminotransferase (AST, previously known as SGOT) is more commonly a marker for liver disease.

Also, these are two of several “markers” found to be abnormal for my daughter. My daughter does *NOT* have mito. It’s quite a leap for anyone to make that abnormal results for these two “markers” qualifies as mitochondrial disease. As in the study at the beginning, this one at the end makes its conclusion using careful words like “suggest,” and “might.”

Sorry, Mr. Kirby, but the dots you try to connect and the holes in many of your statements are potentially misleading. It’s unwise to make false claims, presenting them in a “scientific” or at the very least professional sounding manner. Parents who don’t know any better, have limited time or resources, they read what you have written. They take it as fact, and base very important decisions on what they read from you. I would never want to be responsible for causing pain and suffering via unwarranted, invasive medical testing to numbers of children. I couldn’t look myself in the mirror if my recommendations (to avoid vaccines) proved to be harmful to the very families who were so very “loyal” to me.

Autism, vaccines, concession – and gagging of doctors?

4 Mar

David Kirby makes a juicy statement on EoH:

And next week, I just might drop another bombshell – A BIG one, from another case in VICP.

Turns out that people who settled with the government now want their cases to be known as well. They are seeking me out. You would be AMAZED at what the government has secretly admitted.

Now, granted, its apparent from Kirby’s wording that these extra cases are not part of the Omnibus and possibly not related to autism at all. But something is beginning to worry me quite a lot about this.

When I approached Dr Zimmerman about him answering some questions re: the recent so-called ‘concession report’, I was told:

Dr. Zimmerman…….is not able to publicly discuss this patient. As a participant in this case, the family provided consent for Dr. Zimmerman to share information with the court, but we do not have parental consent to discuss the patient publicly – as we are bound by HIPAA privacy regulations, as in any healthcare setting in the U.S.

And when I asked if anyone else at Kennedy could answer questions or if a hypothetical set of questions could be answered:

Everyone at Kennedy Krieger is bound by the same patient privacy regulations. I hope you can understand that our first priority has to be to respect the privacy of a family – so I think a hypothetical conversation when it is held with the person who saw the patient wouldn’t be appropriate since it really wouldn’t be hypothetical.

So here we have a situation whereby the Doctor who actually examined the child in question and made the medical decisions _cannot_ discuss the case and is honourable enough to not even countenance a hypothetical case. And yet _someone_ smuggled the case report to David Kirby. Are the family up in arms that the case report was smuggled out and given to Kirby? Has anyone asked them? I’m asking them now.

If you are not bothered that the case report and ‘concession’ was smuggled out to David Kirby, why do you continue to block Dr Zimmerman from speaking publicly?

I have a question for David Kirby also: do you think it is right that none of the actual doctors (Zimmerman in this case, god knows who in the other cases you claim to have) can tell their sides – share their medical expertise – and yet its OK for you to hypothesise about their findings?

Something is very wrong here. When we are barred from hearing all sides, we never get the whole truth.

US government concededs vaccine/autism case

26 Feb

As per this story from David Kirby in the HuffPo.

I have some doubts about it but lets see. I’ve emailed David Kirby to ask him to provide me with a full copy of the concession. His willingness to provide this information as well as the information itself should tell us more about what this concession report contains.

Wakefield, Baird, Archives

20 Feb

This is a Guest Blogged post, written by an author with a keen interest in Wakefield related issues. My gratitude to Nigel for writing the post which follows.

Wakefield and his colleagues were fast off the mark (http://www.thoughtfulhouse.org/pr/020608.htm) to criticise the study by Baird et al which recently appeared in Archives of Disease in Childhood. This was a well conducted study which failed to detect measles virus (MV) or elevated measles antibodies in the blood of autistic children. There is a general feeling that even if the almighty Jehovah himself, collaborating with the top researchers at the Universities of Oxford, Cambridge, Harvard and Yale, and with an advisory board of all recent Nobel laureates in medicine, produced a negative study on measles virus in autistic children, Wakefield would still find flaws in the work; remarkably rich from the single largest purveyor of junk science in the last 20 years.

As a criticism of the study Wakefield states “It is a major error to have presumed that peripheral blood mononuclear cells are a valid ‘proxy’ for gut mucosal lymphoid tissues when searching for persistent viral genetic material” and later states “ We are increasingly persuaded that measuring things in blood many years down the line tells us very little about the initiating events in what is, in effect, a static (non-progressive) encephalopathy unlike, for example, subacute sclerosing panencephalitis, which is a progressive measles encephalopathy” .

The hypocrisy of this statement is quite breathtaking, but unsurprising from someone whose relationship with scientific honesty and integrity is somewhat elastic. For those who don’t have long memories, the first “alleged “ evidence of MV in autism came from Wakefiled’s collaboration with Kawashima where using standard methodologies which were highly effective at detecting MV laboratory contaminants, Wakefield claimed that blood cells from 3/9 autistic children gave positive results ( Dig Dis Sci 2000 45:723-9). This paper formed a key part of the UK MMR litigation from 2000-2003 driven by Wakefield himself until it was mysteriously dropped from the final claimants witness reports by Wakefield himself. Perhaps the realization that blood is a poor proxy for gut came to him in 2003, or more likely, that he knew the Kawashima data were junk and would not stand up in court.

Even more staggeringly, the vast majority of samples from autistic tested for MV by O’Leary in the Unigenetics lab in Dublin were from blood; including the now infamous blood samples taken from healthy children at Wakefield’s own child’s birthday party. Steve Bustin in his testimony on the US Cedillo case comprehensively shredded all of the work that came out of that lab. All of this data on blood has never appeared in the public domain although the junk science on MV in the gut did appear in the Uhlmann paper, in a low impact factor journal which promptly rolled over and died.

As always however, you cannot believe anything Wakefield says as being scientifically valid. In the blood there are cells which are representative of the gut lymphoid tissue. This is very well established and non-controversial. When T and B cells are activated in the gut associated lymphoid tissue, they acquire the alpha4beta 7 integrin and migrate via the mesenteric lymph nodes, and the thoracic duct into the circulating blood and then home back into the rest of the gut using the mucosal addressin, MAdCAM-1.. This happens in all healthy people constantly and it is possible to identify these gut-homing cells in blood. Since Wakefield claims that MV persists in the allegedly large lymph nodes in the gut wall, cells should be infected with MV at source and carry the virus with them into the blood. So come on Andy, with O’Leary’s supersensitive PCR, you should be able to detect at least some of these cells migrating to the gut via the blood. After all, the PCR is so sensitive it can detect MV in samples of distilled water, now that is really amazing!

I suppose one should always rejoice in the repentance of a sinner, and if Wakefield has now come to the conclusion that blood is not a proxy for gut lymphoid tissue, we should be happy he is now happy to recant on all his previous claims about blood cells being positive for MV in autism. I have a sneaky feeling however that this is just another “wriggle” to keep the show on the road. If one of his acolytes claims to find MV in blood of autistic children, you can bet that blood will once again become a valid proxy for gut lymphoid tissue.

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