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Maternal antibodies involved in aetiology of autism(s)

26 Mar

A new study released by John Hopkins indicates that maternal antibodies may play a role in the aetiology of autism:

[a]…possible explanation involves the transfer of reactive antibodies from the mother through the placenta to the fetus.

To investigate the latter, the team measured the antibody-brain reaction in blood samples from 100 mothers with and 100 mothers without a child diagnosed with autism.

Mothers of children with autism had a stronger reactivity or more areas of reactivity between antibodies and brain proteins compared with mothers without an autistic child. The presence of maternal antibodies also correlated with having a child with developmental regression, a primary feature of autism.

Things to note. No one, repeat no one is assigning _blame_ to mothers. I have no doubt there will be an attempt in some quarters to twist this into an attack on the sainthood of autism parents but its really not. Biology is biology. C’est la vie. Nobody in this study had the last name Bettlehiem.

Its a fascinating hypothesis though. Along with the latest cutting edge science that has found a genetic basis in approximately 40% of autism this hypothesis utilises good ideas in a rigorously scientific way. Of course, it may well turn out to be wildly wrong, but its a nice change to see some science that’s not about cure or vaccines but just interesting in and of itself.

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.

How to create a disease

25 Mar

This piece is once again guest written by ‘Nigel’, a scientist working in the field whos real name is not actually Nigel ;o)

Followers of Andy Wakefield may not have come across a little spat which took place in the correspondence section of the journal “ Histopathology” last year. It is all to do with “ autistic enterocolitis”, the alleged inflammatory bowel disease described by Wakefield and colleagues in 1998 in the infamous Lancet paper. It is worth remembering that although the MMR-autism link garnered all the publicity, a key intermediate in the link was that measles persisted in the gut, resulted in enlarged lymphoid follicles, which then somehow caused this “ autistic enterocolitis”. At Thoughtful House in Austin, Texas, Wakefield and his acolyte Artie Krigsman, are now trying to make a buck out of treating this condition.

Professors Tom MacDonald and Paola Domizio from Barts and the London School of Medicine in London were experts for the defense in the UK MMR litigation against the vaccine manufacturers out of which Wakefield trousered one million dollars. MacDonald is a pre-eminent gut immunologist with an international reputation and was recently awarded the President’s Medal of the British Society for Gastroenterology for his scientific achievements. Domizio is an extremely well known gut pathologist and is also a senior figure in the Royal College of Pathologists in the UK.

The gist of their article (Histopathology. 2007 50:371-9) was that autistic enterocolitis does not exist. In a forensic dissection of the key paper by Wakefield and colleagues in the Am J Gastroenterology in 2000 (Am J Gastroenterol. 2000 95:2285-95), MacDonald and Domizio clearly showed that the so-called enterocolitis was due to Wakefield incorrectly deeming enlarged lymphoid follicles in the gut as pathological abnormalities, and that he had also created new and unsubstantiated pathological abnormalities to give the impression of gut pathology. The image of enterocolitis in an affected child shown in this paper was an extremely highly magnified picture of a small piece of tissue, which may in fact have come from one of the original Lancet 12 (in order to bump up the numbers of patients studied, Wakefield just reported the original Lancet 12 again). This is a familiar Wakefield tactic, his “representative” images are always taken at an extremely high magnification on the microscope, presumably to hide the fact that the rest of the tissue is normal. MacDonald and Domizio also shredded other Wakefield papers of the same ilk in their article.

Key to this piece of detective work by Domizio and MacDonald was a table in the Am J Gastro paper where these invented histological abnormalities were shown. In his response ( Histopathology 2007 50:380-4) Wakefield did not address any of the substantive points raised by MacDonald and Domizio, but stated that the pathological descriptions in the table were nothing to do with him, but were the work of Prof A Dhillon at the Royal Free Hospital in London, who was not an author of the paper. Unfortunately for Wakefield, Dhillon also wrote to the journal to say that it was nothing to do with him either (Histopathology 2007 50:794). Dhillon showed his version of the table, which unsurprisingly, because Dhillon is a bona fide pathologist, contained none of the new invented abnormalities. So we have an impasse, though not enough of an impasse to stop Wakefield publishing another paper in 2005 (Eur J Gastroenterol Hepatol 17:827-36) showing the same table again, and remarkably, reporting the Lancet 12 for at least the third time! Wakefield produced no response to MacDonald and Domizio’s suggestion that since the histopathology slides from the autistic children seen at the Royal Free Hospital in London are available, it would be a straightforward exercise to have these analysed in an anonymous and independent fashion to put this question to rest.

In response to Wakefield’s defence of his work, the editor allowed MacDonald and Domizio a final say, where they demolished Wakefield again (Histopathology 2007, 51, 552–3).

Although all of this might seem highly technical, histopathological diagnosis of gut disease is a highly skilled art, with extremely high standards, and it is scientific vandalism for non-pathologists such as Wakefield to create new and non-existant abnormalities and then use them to burden children and parents with a life-long inflammatory bowel disease. The best example of this sleight of hand is his definition that a tissue section from the gut of an autistic child was abnormal if it contained a lymphoid follicle. However when the gut biopsies were taken at colonoscopy from autistic children, lymphoid follicles were specifically targeted for sampling because they wanted to look for measles in these tissues. So it is obvious that all will have pathology if one uses this invented criteria.

Throughout this saga, Wakefield has traded on the fact that autistic children do have real gut problems. However instead of attributing these problems in the majority of children to a combination of chronic and severe constipation, fecal impaction, unusual diet, diarrhea, bloating, parasites, gas etc, he had to find a new disease! However the pediatric gastroenterologists in charge of these children at the Royal Free knew what the problem was, when they wrote in the Lancet in 1998, that following cleansing of the colon needed for colonoscopy, many children underwent rapid symptomatic improvement which was maintained if constipation was avoided ( Lancet 1998;351:908). So there you have it, an inflammatory bowel disease treatable by cleansing the colon!

An interesting post-script to all this is that when challenged with the fact that the alleged “enterocolitis” in autistic children is not different from the mild changes and ileal lymphoid hyperplasia seen in chronically constipated, developmentally normal children, Wakefield and Krigsman are now saying that the constipation in autistic children is different! Give us a break !

PS. MacDonald was also an expert witness last year in the Hazelhurst versus HHS case in the USA. In his testimony MacDonald re-iterated in some depth the extent of Wakefield’s rogue and junk science, going back all the way to his identification of measles virus in Crohn’s disease using reagents which were not specific for measles virus. However he picked up yet another deception in the Am J Gastro paper. Much of the paper deals with the alleged lymphoid hyperplasia in the ileum of autistic children, graded by Wakefield on a score 0-3, with 0 being no follicles and 3 allegedly an undefined “severe” lymphoid hyperplasia. To illustrate the colonoscopic appearances of grades 0-3, a panel of photographs purportedly showing the different grades is included as Figure 1 of the paper. The date and time each photograph was taken is reproduced in figure. The image of alleged grade 0 ileal lymphoid hyperplasia (ILH) was taken on the same day and only 1 minute 54 seconds before the image of alleged grade 3 ILH. It is impossible to remove a colonoscope from 1 child and scope another child, reaching the ileum in 1 minute 54 seconds. Therefore the grade 0 and grade 3 images were taken from the same child; the grade 0 image most probably from the caecum ( the part of the colon just after the ileum) and the grade 3 image from the terminal ileum.

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.

Reality Bites Back

22 Mar

So many times I have heard it said by the anti-vaxx/autism believers how they are ‘the mainstream voice’ – *the* autism community.

Today, they got a bit of a reality check.

The New York Times discussed an NYT article in which parents who refuse to vaccinate their kids say:

I refuse to sacrifice my children for the greater good,” said Sybil Carlson, whose 6-year-old son goes to school with several of the children hit by the measles outbreak here………….Ms. Carlson said she understood what was at stake. “I cannot deny that my child can put someone else at risk,” she said.

This piece was written in the wake of a measles outbreak in San Diego:

In a highly unusual outbreak of measles here last month, 12 children fell ill; nine of them had not been inoculated against the virus because their parents objected, and the other three were too young to receive vaccines.

These are the same people who claim that measles is a ‘nothing’ disease – that they had it as kids and it never did them any harm. An argument that reminds me of the one elderly smokers wheel out that they smoked every day of their lives and it never did them any harm as they cough what remains of their lungs up and continue infecting the air with second hand smoke.

Lets be honest here. What these people are doing is very much akin to selfish smokers. They’re wandering up to you and effectively pissing in your face.

Here’s an article from Jan last year in New Scientist.

Deaths have fallen from 873,000 during 1999 to 345,000 by the end of 2005,” said WHO director-general Margaret Chan, on Thursday. “This is a 60% reduction.” And the news is even better in Africa, Chan said. “Deaths there declined by 75%, so Africa is leading the way.”

Measles deaths in children under five fell from 791,000 to 311,000 over the same period, globally.

The new figures estimate that, altogether, measles vaccinations have prevented 7.5 million deaths between 1999 and 2005, and 2.3 million of these were attributable to the intensified programme.

In 2005, 345,000 people *died* from measles. This is down from 873,000 people who *died* from this ‘nothing’ disease that never does anybody any harm. Are people really so purposefully stupid?

And what helped achieve this 60% drop in *deaths* – was it Jenny McCarthy doing chat shows? Was it a whole bunch of people deliberately misrepresenting what happened to a nine year old girl?

No. It was *vaccines* .

Anyway….

In the NYT thread, several stalwart commenter’s from the Age of Autism blog have turned up trying to make their points. The replies to them/before them/after them quite nicely demonstrate how isolated from the mainstream they actually are and how well informed the average person on the street has become both about the need for vaccines and about these people in particular. I do worry that they might start seeing every parent of an autistic child as an anti-vaxx loon but on the positive side, it has shown up very, very publicly how small the autism/anti-vaxx group actually is numerically as well as how little the average person believes them.

By the way, I am well aware that there is another discussion going on in another US papers comments section but I will not link to that as it contains comments about an individual that I want to distance myself from totally and will deny any knowledge of or participation in. Please do not allude to, link to or name either this individual or the newspaper in question.

Urinary opioid peptides and genes

19 Mar

Two new interesting pieces of science out this week.

Firstly was the latest piece of MMR hypothesis destroying science called ‘Absence of urinary opioid peptides in children with autism’.

MMR believers say that part of the hypothetical damage the MMR does to the gut of autistic kids is cause so-called ‘leaky gut’ syndrome, an alternative medicine hypothesis roughly suspected to be on a par with homeopathy and massaging aura’s in terms of scientific credibility.

Proponents of the autism branch of this hypothesis say that the MMR causes leaky gut and that the ‘leak’ fails to parse these urinary opioid peptides which in turn would (in effect) get the patient stoned. or to put it another way:

….these peptides result in effects which are basically opioid in nature (akin to drugs such as morphine) and that they may either, themselves, have direct opioid activity or that they may form ligands for the enzymes which would normally break down such opioid peptides that occur naturally within the Central Nervous System (CNS). In either case, the consequence would be the same. The CNS neuroregulatory role, which is normally performed by the natural opioid peptides such as the enkephalins and endorphins, would be intensified to such an extent that normal processes within the CNS would be severely disrupted…

Yeah, right.

So now some actual science (as oppose to blueskying) has looked at this. And what do they conclude:

It has been claimed for a number of years that the urine of children with autism contains exogenously derived opioid peptides. This finding is said to reflect a disturbance in the integrity of the gut epithelium, act as a diagnostic marker for autism and predict treatment response to a diet excluding gluten and casein. The aim of the present study was to determine whether exogenous or endogenous peptides were present either in the urine of children with autism, or control children.

…..

There were no significant differences between the HPLC urinary profiles of the children affected by autism and the typically developing controls. In those cases where HPLC showed peaks in the locations at which opioid peptides might be expected to be found., MALDI-TOF established that these peaks did not, in fact, represent opioid peptides at all.

……

Given the lack of evidence for any opioid peptiduria in children with autism it can neither serve as a biomedical marker for autism, nor be employed to predict or monitor response to a casein and gluten exclusion diet.

So that’s yet another nail in the undead vampire of the MMR hypothesis (in fact, is there a proper word for something which is less than a hypothesis? Even using the word ‘hypothesis’ now seems aggrandising this silliness)

On the other side of research, where actual progress is being made, an as yet unpublished study (or published but the journal issue hasn’t been released or it has and I can’t find it) has found genetic connections which they think can count towards up to 2.5% of autism:

Disruptions in the gene, called contactin 4, stop the gene from working properly and appear to stop the brain from making proper networks, the researchers reported in the Journal of Medical Genetics.

These disruptions, in which the child has either three copies of the gene or just one copy when two copies is normal, could account for up to 2.5 percent of autism cases, said Dr. Eli Hatchwell of Stony Brook University Medical Center in New York, who led the study.

Now, when we put this together with Rett, Fragile-X, Tuberous Sclerosis, de-novo mutations and a few others I can’t recall I think we’re approaching between 10 – 16% of an established genetic cause for autism(s). Slightly better than the 0% that the vaccine hypotheses are running at.

First Time a Vaccine-Autism Case Has Been Awarded… Right?

15 Mar

Wrong.

You need to go read Kathleen’s post titled A Not-So-Hidden History. For the best investigative blogging in autism, Kathleen Seidel is the go to person. Once again, it was not the “journalists” of autism (Kirby and Olmstead) who uncovered this information.

What does it mean?

Well, for one, I think that claims to the effect that the Poling case is unprecedented, an event of major significance, with pigs flying and the sky falling, have been rendered completely bogus.

Furthermore, let’s consider whether allowing such an impression to be promoted was an honest thing to do. As Kathleen notes:

In all but one of the above-listed cases with published decisions, the petitioners were represented by individuals who are now or have been members of the OAPPetitioners Steering Committee — including its chairman, Mr. Clifford Shoemaker, counsel to the Poling family.

Now, let’s think about the numbers. It appears that each year in the US about 50 vaccine injury claims are found to be “compensable” (source). What are the odds that at no point in time any of the compensated persons was autistic? We’re talking about very rare occurrences, but statistically they must occur unless autistic persons are specially immune to vaccine injury.

It’s not possible, from available data, to make an accurate determination as to whether autistic persons are more or less likely to suffer vaccine injury than non-autistic persons, and no scientific reasons to lean one way or the other.

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.

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