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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.

MMR Smoke and Mirrors

8 Feb

In the days following the latest in an increasingly long line of studies repudiating the MMR/autism hypothesis, adherents to this belief system have clung wildly to the flotsam and jetsam that is pretty much all that is left to hang on to.

On the ADC Online forum, John Stone encapsulates this position with a letter I’ll go through point by point:

Of the original 1770 Special Educational Needs (SEN)cases in this study 255 were Autistic Spectrum Disorder (ASD). Of the 1770 735 dropped out, then a further 780 were excluded for reasons which are not transparent. 255 were left (a different 255 from before): some ASD, some just SEN but we do not know in what proportion. Then, exactly 100 were excluded because of inadequate blood tests. Of the remainder 101 had ASD (less the 40 per cent of the original 255 autistic cases). None is reported to have bowel disease (the sub-group of Wakefield’s study) or adverse reaction to MMR.

This is numerical hoopla and means nothing. The key to Stone’s frustration is the last sentence of this paragraph and the first one of the next:

It is not clear what the scientific purpose of this study is…….None is reported to have bowel disease (the sub-group of Wakefield’s study) or adverse reaction to MMR. This, of course, makes this a distinct group from the children referred to Andrew Wakefield and his colleagues at the Paediatric Gastroenterology department of the Royal Free Hospital in the 1990s and slighlty beyond.

Stone is arguing that because none of the ASD subjects were found to have bowel issues that disqualifies them as being like Wakefield’s subjects.

Methinks someone has missed the point.

The issue is one of clinical science. Wakefield claims to have found a clinical link between the measles live virus component of the MMR which causes bowel issues with associated autism. However, the Cedillo hearings drove a rather large nail into that particular coffin.

Professor Stephen Bustin is the worlds foremost PCR expert. Bustin uses PCR every day in his work, he has 14 papers in the peer reviewed literature on PCR, over 8 book chapters and is personally the author of the ‘A to Z of Quantitative PCR’ which is considered ‘the bible’ of PCR. One of his papers has been cited over 1,000 times. Another has been cited over 500 times. He both organises and speaks at international PCR conferences. His testimony regarding the Unigentics lab used to find the measles virus in the guts of these autistic kids was invaluable.

Bustin examined the Unigentics lab findings and procedures in great detail (spending over 1,500 hours in the lab itself) and found that the lab (which has now gone bust as a business) made a fairly basic error of science when looking at Wakefield’s samples:

“…Now, these are from samples that should have been discarded according to the SOP from Unigenetics because there was no GAPDH present, i.e., the RNA is degraded. If you look at the Cts for the F-gene which they reported as positive you can see they’re the same. Now, if this is degraded RNA yet I’m getting the same Cts for my F-gene target this can’t be RNA because it would have been degraded.

That’s what the GAPDH showed me. Now, if it isn’t RNA it has to be DNA. If it is DNA it can’t be measles virus it has to be a contaminant.”

In other words, the samples Wakefield provided to Unigentics were useless because Unigenetics own documented lab procedure says they were. But they used them anyway. The results were a bombshell. If the RNA is useless (which the lab process defines it as being) it can’t actually be RNA. If its not RNA then it must be DNA and if its DNA then it can’t be measles virus because measles virus doesn’t exist as DNA.

What the Unigentics lab detected in Wakefield’s samples were contaminants. There’s no way that Unigentics could possibly have been detecting measles virus.

This was backed up by Chadwick who checked Wakefield’s work (at his request). He also did a PCR test.

Q. What results did you receive from the gut biopsy materials for measles RNA?
A. They were all negative.

Q. They were always negative?
A. Yes. There were a few cases of false positive results, which I used a method to see whether they were real positive results or false positive, and in every case they turned out to be false positive results. Essentially all the samples tested were negative.

Q. Did you inform Dr. Wakefield of the negative results?
A. Yes. Yes.

So not only are the samples Wakefield provided useless, the testing he asked Chadwick to perform showed they were useless. And yet he went ahead anyway.

Its also worth noting that every subsequent piece of MMR science (save one unpublished poster presentation) went through Unigenetics lab and went through the same process as Wakefield’s.

So lets be frank – the idea that Wakefield found measles virus in the gut of autistic kids is plain and simply wrong. He screwed up.

The issue then becomes one of probabilities: given that there is no scientific reason to believe MMR causes autism with bowel disorders, it is nonsensical to only look at autistic kids with bowel disorders. And in answer to Stone’s question ‘It is not clear what the scientific purpose of this study is…’ the answer is plain – it has scientifically illustrated that autistic kids had exactly the same measles antibody response as non-autistic kids. No difference. At all.

Stone continues to attempt to muddy the scientific waters:

There is presently not enough consensus about the etiology of ASD to assume there is any single origin, nor anything to rule out ASD subjects having gut symptoms which justify on occasion invasive procedures. The NAS apparently consider that there is a sub-group which is being denied sympathy, investigation or treatment, and this is in itself troubling. It also suggests that this study is not representative since no such cases are included, and it does not address their problems.

This is slipperiness taken to almost artistic levels. Stone is quite right there is no consensus about etiology of autism. That does not mean we cannot say what doesn’t cause it though. And based on the available science, MMR ain’t it.

The paper further does not attempt to claim that autistic kids don’t have gastric issues and Stone’s implication that it does and his attempt to gain the mainstream ground by invoking the name of the NAS is grasping and dishonestly representative of the NAS’s statement. They do _not_ claim, infer or consider that there is any such sub-group. What they suggest is that the MMR debacle has led to some doctors dismissing some parents fears about their kids bowel issues as hysteria. This is, of course, unacceptable but Stone is simply attempting to manipulate the NAS statement for his own ends.

“The NAS warning relates to the GMC hearing involving doctors Wakefield, Walker-Smith and Murch which is set to resume on 25 March approaching. I do not think it is being unduly cynical to query the publication of this study at the present time as a media event, bearing in mind that it seems to have been carried out five or six years ago.”

This is either again deliberately misleading or an example of conspiracy hysteria. From what I can tell the study was commissioned five/six years ago. Not carried out.

Stone concludes:

Meanwhile, the plight of autistic children with gastro- intestinal symptoms is excluded both from the study and public attention, as if they did not exist. The NAS statement warned of “creating further confusion” and this is precisely what this study and its media exposure has done.

Children with gastro issues and autism were not ‘excluded’ they just weren’t found. Maybe they really don’t exist? Maybe Stone would’ve preferred that the study authors fabricate a few subjects?

The bottom line of this gastro/autism issue is that there is no science to back up the opinion Stone has. On the other hand there is plenty of science that indicates there is no link between MMR and autism. Far from this study creating confusion, it has simply shown up the shortcomings of Wakefield’s bad science and Stone and his ilk are in reality the people desperately attempting to create enough confusion for Wakefield to escape unscathed.

Why investigating Wakefield matters

1 Aug

I occasionally get emails or blog comments along the general lines of:

Why do you do this? These people [Wakefield, DAN, whomever] are trying to help autistic kids!

The (il)logic train is very simple to these people: X listened to their ideas about vaccines and autism, X tries out never-seen-before-treatments on autistic patients therefore X is a hero. When X gets examined with disdain from mainstream medicine X becomes a martyr.

There is a bizarre disconnect at work here. Somehow we have progressed from an idea that scientific enquiry adds to the general body of scientific knowledge to the idea that its just about OK to do anything to patients irrespective of what’s actually ‘wrong’ with them in order to advance a poorly supported hypothesis.

Here’s why this matters to me and why Andrew Wakefield is a prime example of all that has gone bad in the small but very vocal subset of autism parents who believe MMR/thiomersal/vaccines in general causes/triggers autism.

First and foremost is the basic injury done to the scientific objective truth. This is, I agree, an entirely abstract concept but it has implications in our every day real-world lives. Science is what brought us the nice cubes of ice in our whisky and also brought us the Nuclear bomb. Whatever we personally think of these results, science has prevailed in both cases. The _truth_ has prevailed.

The people I and others refer to as the Mercury Militia (referring to the anti-vaccine/autism/parent activists) are not interested in the truth. This is not an opinion, it simply is. From the National Autism Associations deliberate and outright lies about what science has revealed about autism, to their supporters attempts to silence the debate via threats of violence and encompassing Lenny Schafer’s admission that there is not enough science to support the idea of a vaccine hypthesis and their only chance of ‘winning’ is via a legal route with vastly lower standards of evidentiray proof as well as David Kirby’s refusal to fess up to the terms of the hypothesis he himself set.

What people need to grasp is that this basic dishonesty permeates the entire autism/vaccine hypothesis. Time after time, when presented with more attempts to establish the truth, they never fail to act dishonestly and lie to support their beliefs.

As far as scientific objectivity and a search for the _actual_ truth is concerned – forget it. This is a set of people who are simply uninterested. If a story/hypothesis emerges that doesn’t embrace vaccines as causative agents then they will attack it. And what they will attack it with is mostly lies.

I have a question for them and people who believe and trust them – and I know they read this blog. The question is this: how good do you think the quality of any information/data is that emerges from the mouths of people who lie, evade and threaten? How good do you think the science is that originates from people who plagiarise other peoples work? How accurate do you think advocacy groups that lie to the media about what they believe are?

At some point there has to be a time when even self-denial cannot support these people. As we have seen, recent attempts to coerce the media have resulted in humiliating climbdown after climbdown. How far can denial continue to power the majority of the new soccer-mom, middle-class powered anti-vaccine movement of the naughty noughties?

Let’s take an example that touches on the title of this blog – Andrew Wakefield. His hypothesis regarding MMR and autism was discussed at length during the recent Autism Omnibus hearings (Cedillo, June 2007).

Andrew Wakefield is seen as a pretty much a demigod amongst the Mercury Militia. His word is taken on pure faith. Why? Because he agrees with certain parents that the MMR jab caused/triggered their child’s autism. The basic hypothesis is as follows:

1) Child is injected with MMR
2) Measles virus (MV) travels to gut causing various gastro issues
3) MV carries on travelling to the brain causing autism symptoms

ergo – MMR causes autism with associated gastro issues.

The whole hypothesis stands or falls on finding vaccine strain MV in the guts of autistic children. Wakefield (and others) claim they have. However, the facts tell a different story.

Wakefield (and all others) used a technique called PCR to ‘find’ MV in their subjects. During the afore-referenced Cedillo hearing, Dr Stephen Bustin gave testimony. Bustin is possibly _the_ world expert on PCR. Not only does Bustin use PCR every day, he has 14 papers in the peer reviewed literature on PCR, over 8 book chapters and is personally the author of the A to Z of Quantitative PCR. which is considered ‘the bible’ of PCR. One of his papers has been cited over 1,000 times. Another has been cited over 500 times. He both organises and speaks at international PCR conferences.

Basically, when it comes to PCR, the technique Wakefield (and others) used to ‘find’ MV – this is the guy.

NB – this whole section of evidence I blogged extensively, including quotes. Please read for more detail.

Bustin was first and foremost concerned that:

1) The technique that utilised PCR and employed by Wakefield (and others) was essentially useless. No controls were used. This is a serious scientific omission and makes comparing the data accurately impossible.
2) The technique failed to outline procedures for dealing with contamination of data
3) There were mismatched and misrepresented data designs

These items raise very grave questions over the _methodology_ used. The next set of concerns reveal the full extent of the scientific shambles of the entire MMR/autism industry.

This is a vital point to understand before we discuss these things. It is vital that we remember that, aside from one unpublished poster presentation (Walker 2006), _all_ , I repeat _all_ science that has claimed to find vaccine strain MV in the guts of autistic patients used the same lab to get its results – Unigentics, the lab of Professor John O’Leary. It is also vital to remember that Stephen Bustin did not just examine for afar. He spent over 1,5000 hours in the O’Leary lab before coming to his conclusions.

His conclusions were devastating.

1) The O’Leary lab had failed to take necessary steps. This omission made it impossible they were detecting MV.
2) The O’Leary lab was contaminated.
3) It was the contamination that O’Leary’s lab was detecting, not MV. Its worth quoting Bustin at this point:

So all of this evidence suggests very, very strongly that what they are detecting is DNA and not RNA. Because measles virus doesn’t exist as a DNA molecule in nature, they cannot be detecting measles virus RNA. They are detecting a contaminant.

It cannot be any clearer. According to the the man who is the recognised world expert on the technique that *all published science claiming to find MV in the guts of autistic kids* lab utilised, it is simply not possible that this lab could’ve detected MV. Without MV, there is no MMR/autism hypothesis.

And what is the response of Wakefield’s supporters to all this? I will quote John Stone, who fancies himself the cool calm voice of the MMR branch of the autism/antivax movement. When presented with Bustin’s testimony, he said:

I do not think there is much to be gained by arguing about the contents of a test tube….

This tells us all we need to know about the levels of denial that operate in this arena. Stone resorts to saying that the Cedillo case was not settled yet, which is true. However he evades the point that Bustin’s testimony is not dependant on legal justification. It is dependant on scientific accuracy. Given that it is *documented by O’Leary’s own lab procedure* that they omitted key parts of the process necessary to establish the presence of MV, I really don’t know what else there is to say on the matter.

Secondly is the effect all this anti-vaccination rhetoric has on the health and safety of public citizens. News stories that are accumulating started circulating a year or so ago on dropping immunisation rates and rising deaths and injury from vaccine-preventable illness:

In the course of 10 days, officials confirmed four pertussis cases, including the hospitalization of one child to treat respiratory symptoms. All of the cases afflicted children under 5 years old, and one in an infant just a couple of days old, according to Ravalli County Public Health Nurse Judy Griffin…..There have been more than 450 cases of pertussis in Montana so far this year, according to the Department of Health and Human Services. The infection rate is much higher than average years, when about 30 cases are reported….”Parents should check immunization records and make sure they’re up to date,” Nurse Judy Griffin said.

Ravalli Republic.

(Columbia) The state health department said yesterday that an infant has died from whooping cough. It is the first death reported in South Carolina from the disease in nearly three years….The health agency said it’s important children receive pertussis vaccinations on schedule.

WLTX News.

A whooping cough epidemic has hit Deschutes County. Health officials say that in the past six weeks, 18 cases of pertussis have been identified in the county. In all of 2004, there were only two cases of pertussis in Deschutes County.

KATU 2.

An increase in cases of the highly contagious whooping cough is prompting state health officials to urge stricter compliance with childhood immunization schedules….Cases have increased annually from 22 statewide in 1996 to 120 last year…Oklahoma’s childhood immunization levels continue to lag behind those nationally, officials said.

RedNova News

Kids are dying again. And in some areas of the US the disease causing those deaths is at epidemic (real epidemic as oppose to autism epidemic) proportions. And thats just one disease that vaccination removed the sting from for many years. In my country (UK) we’ve recently had a Mumps epidemic.

Vaccine uptake rates of this vaccine in the UK have fallen to amongst the lowest in Europe:

Take-up rates of the jab dropped throughout the UK, down to less than 70% in some areas, after a small-scale study published in The Lancet in 1998 by Dr Andrew Wakefield suggested a link to autism.

Source.

In 2004, mumps cases in the England and Wales rose from 4,204 in 2003 to 16,436 in 2004, nearly a four-fold increase.

And in the first month of 2005, there were nearly 5,000 cases. Most were among young adults born before 1988 and who would, therefore, not have been offered MMR as a child. In the second paper, Dr Ravindra Gupta, from London’s Guy’s and St Thomas’, working with colleagues from King’s College London, found cases have also occurring in very young children who would have been eligible for the MMR – measles, mumps and rubella – vaccine…..Dr Gupta (…) said uptake of MMR among two-year-olds in the UK fell from around 92% in early 1995 to around 80% in 2003/4.

Source.

In October 2004, experts predicted that due to falling vaccination uptake, the UK would start to suffer from ‘small outbreaks’:

The medical newspaper Pulse has warned that there could be a measles epidemic this winter on a scale last seen in the 1960s. It said that lowering levels of immunity meant as many as 12% of children and 20% of adults could be hospitalised if infected by measles.

Source.

And now, last year, 18 months after these warnings, we have the UK’s first measles induced fatality in 14 years.

The 13-year-old who died last month lived in a travellers’ community. It is thought that he had a weakened immune system; he was being treated for a lung condition. The boy died of an infection of the central nervous system caused by a reaction to the measles virus. The Health Protection Agency described his death as shocking.

Source

The Times also says that of the 72 reported measles cases in that last month, 9 required hospitalisation – this tallies almost exactly with the 2004 prediction of a hospitalisation rate of 12%.

This is real evidence of harm. Never forget it can be traced back to a man with absolutely no evidence at all to support the science of his claims.

Thirdly is the effect all of this has on autism and autistic people like my daughter. The vaccine induced blind panic that the people behind these hypotheses and their media agents at the NAA, SafeMinds, Treating Autism and Generation Rescue have done their best to inculcate is having a toll on autistic people. Here’s a passage from an email I received a few months ago:

…when I said he was autistic, they told me I shouldn’t bring him to a school, that vaccines had made him ill and that their kids could catch that illness….after all, these women reasoned that if it [autism] could be caused by vaccines, it could be caught and passed on to other kids….

This is frightening. Autism as a condition has a lot of stigma to deal with already. The fact is that any hypothesis that has gone on now for over 10 years without any scientific support, as the vaccine/autism one has, needs to shut up and move on. No good can come of creating more stigma for no benefit.

In 2004, the BBC discussed a report from the Institute of Child Health, the National Autistic Society and the Parents’ Autism Campaign for Education that looked at the state of autism research. One of its conclusions was that:

….the row over a possible link with the MMR jab has over-shadowed the fact that little is known about the behavioural disorder….

This has led to a situation wherein:

…It showed almost 60% of UK autism research only looks into the symptoms, while just 22% is dedicated to the causes, 8% to possible interventions and only 5% to the effect of family history.

So, a dwindling 8% of all autism research fundings looks into interventions. The marketing of the MMR hypothesis has meant that this pathetic 8% is all that autistic people can expect in terms of educational research, programs for adults – basically if it will have some tangible impact on the lives of autistic people then it comes out of this 8%.

This then, is the legacy of the autism/vaccine hypothesis and its supporters. Bad for the truth, bad for science, bad for public health and bad for autistic people.

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