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Sharyl Attkisson blogs the Hannah Poling settlement

10 Sep

I had forgotten Sharyl Attkisson. She is a reporter for CBS news who has covered vaccines in the past, but has been silent on the issue for the past year or more.

Her recent piece shows exactly the sort of reporting that frustrated me in the past: Family to Receive $1.5M in First-Ever Vaccine-Autism Court Award

In that piece she links to her piece from 2008 on the Hannah Poling case: Vaccine Case: An Exception Or A Precedent?

Here’s a quote from that earlier piece:

While the Poling case is the first of its kind to become public, a CBS News investigation uncovered at least nine other cases as far back as 1990, where records show the court ordered the government compensated families whose children developed autism or autistic-like symptoms in children including toddlers who had been called “very smart” and “impressed” doctors with their “intelligence and curiosity” … until their vaccinations.

They were children just like Hannah Poling.

What’s still being debated is whether the Poling case is an exception … or a precedent.

So, which is it? Were there children “just like Hannah Poling” or is this the “First-Ever Vaccine-Autism Court Award”?

Actually, it is neither. This isn’t the first vaccine court award involving autism, and the other cases are not “just like Hannah Poling”.

For real information on the other nine cases, read Kathleen Seidel’s piece on Neurodiversity.com. Few, professional or amateur, can compare the the thoroughness of Kathleen Seidel. For example, one case (the first I read involving autism from the vaccine court) is Suel v. HHS. Young David Suel had tuberous sclerosis, a condition known to be associated with autism and epilepsy. Epilepsy occurs in about 60 to 90% of individuals with TS. Autism occurs in about 25-50%. David Suel’s case was declared to be a “table injury” wherein the seizures began within a set period after his DPT vaccination. What is notable about that is the table for DPT was later changed–when it was shown that DPT was not responsible for inducing seizure disorders. In other words, had David Suel been vaccinated, or just filed, after the change in the table, he likely would not have been awarded damages.

“They were children just like Hannah Poling”? Is tuberous sclerosis just like mitochondrial disease? (answer: not even close).

Shall we go on? In her recent piece, Ms. Attkisson states:

In 2002, Hannah’s parents filed an autism claim in federal vaccine court. Five years later, the government settled the case before trial and had it sealed

Not accurate. The court did not “settle” the case in 2007. They conceded the case, and they were in the process of completing the settlement when someone leaked the information to the press. The government did not “seal” the case–it is standard procedure to keep this information confidential until the settlement is completed.

But that doesn’t make a good story, does it?

Ms. Attkisson goes on:

In acknowledging Hannah’s injuries, the government said vaccines aggravated an unknown mitochondrial disorder Hannah had which didn’t “cause” her autism, but “resulted” in it. It’s unknown how many other children have similar undiagnosed mitochondrial disorder. All other autism “test cases” have been defeated at trial. Approximately 4,800 are awaiting disposition in federal vaccine court.

Mito-autism was a big thing for a while there. David Kirby took the story and ran with it–making a lot of mistakes along the way and propagating a lot of misinformation. It is unknown how many other children have similar disorders–but the researchers who studied cases like Hannah Poling have stated that cases such as hers are “rare”.

“All other autism “test cases” have been defeated at trial”.

What is conspicuous about the other “test cases” is that in none of them was it argued that the children were like Hannah Poling–i.e. the attorneys did not argue that a mechanism of autism through mitochondrial dysfunction aggravated by vaccines existed. In fact, one child named as a test case was pulled from that slot in order to argue that mitochondrial based case. The expert report filed for that child (since pulled from the Omnibus website) did not argue mitochondrial disorder or dysfunction at that time. In other words, the idea of a mitochondrial disorder being linked to autism was so alien from the cases being made by the attorneys for the families in the Omnibus that this child had to argue the case separately.

It is often pointed out that many autistics may have mitochondrial dysfunction. This is based largely on studies out of Portugal. It is left implied, and it is often believed that mitochondrial dysfunction means vaccine injury in these cases. This was the impression that David Kirby put forth and it was clearly wrong. First, mitochondrial disorders are a very broad spectrum. The type that Hannah Poling has is not the same as those detected in most autistics. Second, most reports of mitochondrial disorders and autism, including the Portugal studies, do not involve regression. Third, even amongst those children reported by the groups that identified Hannah Poling, regression was often idiopathic or followed fever clearly independent of vaccination.

I do not expect Ms. Attkisson to present the following (quality) information, so I will repeat it here:

Here are the answers to some questions posted to mitochondrial medicine experts and their answers:

When asked, to respond to the position: ‘‘I view the risk of vaccination in known metabolic disease patients to generally be outweighed by the risk of the infectious diseases being vaccinated against”

63.2% strongly agreed
31.1% agreed
0.9% disagreed
and 0.9% strongly disagreed.

Asked about the opinion that the risk of vaccination in metabolic disease was ‘‘greater than the risk of the infectious diseases being vaccinated against”

52.9% strongly disagreed
40% disagreed
3.5% agreed
and none strongly agreed

Damages awarded in the Poling case?

3 Sep

A document has recently been posted the Court of Federal Claims website, describing an award in a vaccine injury case. The document is redacted, but the following paragraph indicates to me that this involves the case of Hannah Poling:

Respondent has conceded that petitioners are entitled to compensation due to the significant aggravation of Child’s pre-existing mitochondrial disorder based on an MMR vaccine Table presumptive injury of encephalopathy, which eventually manifested as a chronic encephalopathy with features of autism spectrum disorder and a complex partial seizure disorder as a sequela.

The amount involves 4 parts: (1) a payment of about US$1.5M for life care, future earnings and pain-and-suffering, (2) a lump sum payment of about US$140,000 for past unreimbursable expenses, (3) a lump sum payment of about $7,800 to cover a medicaid lien and (4) an undisclosed amount to purchase an annuity to cover items in the life care plan.

The award amount seems larger than typical to me. I don’t put this out as a criticism. Rather the opposite. If we as a people are going to compensate those injured by vaccines, as we should, we should compensate highly. We can not fully compensate a person or a family for injury. For example, the cap on pain and suffering damages has not been increased in the roughly 25 years that the vaccine program has been in place.

It is not easy to write this piece, and I hesitate to publish it. Assuming this document refers to the Poling family, they chose to redact information.

I will end with this statement from the Special Master who wrote the decision:

Based on the persuasive factors supporting petitioner’s vaccine claim and respondent’s election not to challenge petitioner’s claim, the undersigned finds that petitioner is entitled to compensation under the Vaccine Program. Accordingly, a determination of damages is appropriate.

Special fevers, mitochondria and autism

30 Dec

Thats right, its back.

Ginny Hughes, writing for the Simons Foundation writes about new methods of detecting mitochondrial damages that may lead to autism. Of course, since last year that inextricably calls to mind Hannah Poling.

Just as a quick refresh, Hannah’s case was compensated by US Gvmt who accepted that vaccines caused a fever which triggered an underlying mitochondrial dysfunction which in turn led to ‘autism like symptoms’. This is oppose to ‘vaccines caused her autism’ which you’ll find a lot of people claiming.

The crux of the matter is fever. Mitochodrial dysfunction appears to be largely triggered by fever. Without the fever there’s no dysfunction. Without the dysfunction theres no autism.

Jay Gargus, professor of physiology and biophysics at the University of California, Irvine who’s studied mitochodria for 20 years makes a very telling point in this piece:

“It terrifies me that people will be making arguments [from this work] that further enhance the panic about vaccines,” Gargus adds. “Obviously, getting a vaccination will sometimes give you a fever, but the kid’s going to get a fever sooner or later anyway. It’s not like it’s a special fever.”

All kids get ill. They’re going to get fevers. In fact a lot of the things that vaccines try and prevent cause fevers. Flu for example. What vaccines don’t do is give a child a ‘special’ autism causing fever. Thats because there _is_ no special autism causing fever and no special autism causing vaccines either.

Fever Plus Mitochondrial Disease Could Be Risk Factors for Autistic Regression

24 Sep

Autism, regression, mitochondrial disease and vaccines. With a combination like that, this paper is likely going to be very important.

Fever Plus Mitochondrial Disease Could Be Risk Factors for Autistic Regression

Here is the abstract:

Autistic spectrum disorders encompass etiologically heterogeneous persons, with many genetic causes. A subgroup of these individuals has mitochondrial disease. Because a variety of metabolic disorders, including mitochondrial disease show regression with fever, a retrospective chart review was performed and identified 28 patients who met diagnostic criteria for autistic spectrum disorders and mitochondrial disease. Autistic regression occurred in 60.7% (17 of 28), a statistically significant increase over the general autistic spectrum disorder population (P < .0001). Of the 17 individuals with autistic regression, 70.6% (12 of 17) regressed with fever and 29.4% (5 of 17) regressed without identifiable linkage to fever or vaccinations. None showed regression with vaccination unless a febrile response was present. Although the study is small, a subgroup of patients with mitochondrial disease may be at risk of autistic regression with fever. Although recommended vaccinations schedules are appropriate in mitochondrial disease, fever management appears important for decreasing regression risk.

The authors note neurologic regression in general (not just autistic regression) is observed with patients who have metabolic diseases:

Patients with mitochondrial diseases, like many patients with metabolic diseases, are at increased risk of neurologic regression in conjunction with stressors such as fever, infection, and dehydration.

They studied 28 patients who met DSM-IV criteria for autism and diagnostic criteria for mitochondrial disease.

They define regression and whether it is related to fever thusly:

Autistic regression was defined as loss of developmental skills that included speech, receptive skills, eye contact, and social interests in individuals ❤ years of age. A relationship between fever and autistic regression is defined as regression beginning within 2 weeks of a febrile episode without the suggestion of infectious meningitis or encephalitis.

One comment–the definition of regression is somewhat vague to me. What is also critically important in this discussion is whether there were any signs of autism before the regression. Or, as some may put it, is this regression into autism or autistics undergoing regression? Is there a mix of pathways?

They state that 17 of the 28 patients studied underwent an autistic regression. This is higher than the roughly 25% value for autistic regression they assumed for the general autism population, and statistically significant.

In other words, they are saying that autistic regression may occur more often with kids with mitochondrial diseases.

They note that some of the fevers could be linked to vaccination:

The 17 individuals with autistic regression could be divided into 2 groups, those who regressed with fever (70.6%, 12 of 17) and those who regressed without identifiable linkage to fever or vaccinations (29.4%, 5 of 17).

And,

No individual showed regression with vaccination unless a febrile response was present.

They discuss the concerns with vaccination in the conclusion, noting that vaccination is still recommended for children with mitochondrial diseases. My experience in discussing this issue with mitochondrial disease experts is that they find vaccination to be extremely important. If, for some reason, they decide to not vaccinate a child with mitochondrial disease, they insure that all family members are vaccinated to protect the child.

Children with identified mitochondrial diseases are routinely managed carefully by their physicians with aggressive fever control and hydration. In this context, vaccination of children with mitochondrial diseases is recommended. In our experience, the vast majority of patients with mitochondrial diseases receives a full vaccination schedule according to American Academy of Pediatric guidelines without consequences, particularly when physicians are sensitive to fever control and hydration. In our patients with mitochondrial disease and autistic spectrum disorders, the vaccines did not appear related to the neurologic regression.

I will note again that I feel autistic regression as defined is too vague. Were the patients on the spectrum before the regression? Were they typically developing before the regression?

At least two children were noted to have multiple regressions (a sibling pair). That indicates that at least in some cases, regressions occurred in people already autistic. There just isn’t other information on this.

Another area I would like to see discussed further is on siblings:

Affected siblings were identified in 35.7% (10 of 28).

Affected how? Mitochondrial disease. But, are they also autistic? It would seem not since they included one sibling pair.

This is a big question to me. While the spotlight has been shown on the possibility of mitochondrial disorders being linked to autistic regression, the more general question is more important: could fevers induced by vaccination result in any regression (autistic or otherwise) in people with mitochondrial disorders.

Another question in my mind in this study. Are there patients who underwent regression from non-autistic to autistic) after age 3? According to the Johns Hopkins group, this doesn’t happen. According to them, there is an age window where the regressions could result in autism. This is a very important question in how these patients might fit in to the broader spectrum of autism.

David Kirby on mitochondral autism

1 Dec

Over the last few months David Kirby has been talking about a new paper that would be forthcoming that would postulate a link between autism and vaccines via Mitochondrial disease. He claimed to have some inside knowledge of this due to interviewing one of the co-authors.

That co-author was Richard Kelley and that paper has indeed been published prompting another excited flurry of posts from David on the Huffington Post. I know it was Richard Kelley as I’ve also been conversing with Dr Kelley via email. Following David’s initial post on the subject several months ago, amongst many other things Dr Kelley expressed:

…furor and frustration that we all feel right now is due to the very poor way in which this has been handled by several people each trying to claim an undeserved 15 minutes of fame.

It was easy to tell that here was a man who was immensely angry but was determined not to discuss any results – possible or actual – until they had gone through the rigour of peer review.

A day or so ago David published a post about this new study but I have to say that in my lowly opinion it left quite a lot unsaid and inflated the significance of what it did say.

David made much of key sentences of this paper (Cherry picking) and really the overall importance of it was a bit sidelined. For example, David says:

[This paper tackles]..The widespread misconception that Hannah’s case was “unique,” and without any bearing on other autism cases…

Whereas, the actual paper states:

Recently, there has been increased concern regarding a possible causative role of vaccinations in autistic children with an underlying mitochondrial cytopathy. For one of our 25 patients, the child’s autism/neurodevelopmental deterioration appeared to follow vaccination. Although there may have been a temporal relationship of the events in this case, such timing does not prove causation.

That one patient was, of course, Hannah Poling. Now, if there was ever ‘widespread misconception’ that mitochondrial autism was real (which I don’t believe there was) then this paper certainly adds weight to the argument that it exists. However, if David is trying to claim that this paper indicates that autism caused by vaccine fuelled mitochondrial disease is not unique to Hannah Poling then I think he has misunderstood or misread it. One out of twenty-five is pretty much the definition of uniqueness.

David then goes on to claim that this study gives weight to the claim that regressive autism is real. As it happens I agree with that. However, it should be placed in its proper context. David states:

Nearly all of the children in my book regressed into autism – a process that often began almost immediately after receiving multiple vaccinations.

Perhaps that is why the very idea of regressive autism has been cause for derision among many scientists, who insist that the parents were simply too ignorant to “notice” autism symptoms in their children earlier on.

That is, with due respect to David, simplistic and not representative of either data, or testimony. During the Autism Omnibus hearings, Professor Sander Greenland gave testimony (for the petitioners it should be noted) that clearly demonstrated that such scientists as Eric Fombonne clearly accept that regression exists and can possibly account for 28% of autism cases. Thats not exactly science being derisive of parents ideas about regression. However, it must be evaluated on a scientific case-by-case basis. As also testified to during the Autism Omnibus proceedings, parents who thought their child (Michelle Cedillo) had regressed were clearly shown to be in error when video evidence demonstrated obvious indicators of autism prior to vaccination.

However, David suggests that ‘nearly all’ the children in his book were regressive following vaccination. As Greenland showed during testimony. At most, this group of ‘clearly regressive autistics’ (autistic people who allegedly regressed following vaccines) could – at most – account for 6% of all ASD cases. If we take the numbers down to the sort of ‘low functioning only’ cases that I have heard many autism/vaccine believers in then we are down to 2% of all autism cases. This translates to approx 11,200 0 – 21 year olds in America. How this number constitutes an autism epidemic I have no idea.

David goes on:

Most of the children in my book – and Hannah Poling as well – had rather severe physical, biomedical problems associated with their regression. Again, this claim has been met with scorn by many in the medical and science communities, who say that autism is much more of a behavioral/neurological than biomedical condition. Parents and doctors who do try to treat these physical symptoms – with conventional and alternative therapies alike – are singled out for particular damnation by many of these so-called experts.

Firstly, I very much doubt that any parent who is treating a childs illness with conventional therapy has been scorned by anyone. There is however, no epidemiology that associates autism per se with the mainly toxicological and/or gastric issues most biomed parents talk about. The paper states:

Twenty-one patients (84%) had histories of major non-neurological medical problems, most commonly of the gastrointestinal system, with gastroesophageal reflux affecting nine and constipation affecting eight subjects.

The other ‘major non-neurological’ were things already associated with autism or other developmental disorders such as Prader Wili.

Lets also note that none of the symptoms listed by David would be treatable by chelation for example.

This study found 64% had GI dysfunction. This is very high and warrants further study, no doubt about that but…what relation has this to vaccines?

The claim that vaccines cause GI dysfunction revolves around the MMR hypothesis – a hypothesis that has taken an absolute battering of late. It has been established in clinical science that the findings of Wakefield et al cannot be replicated and the original findings that indicated a link were based on corrupt data. Of all the various vaccine hypotheses this is by _far_ the weakest.

There is also the fact that the GI Symptoms listed in the study are common amongst a whole range of Mitochondrial diseases and thus its hard to see what particular significance they have to mitochondrial autism.

David goes on:

VACCINES MAY PLAY A ROLE IN AUTISTIC REGRESSION IN SOME CHILDREN WITH MITOCHONDRIAL DYSFUNCTION

“Recently, there has been increased concern regarding a possible causative role of vaccinations in autistic children with an underlying mitochondrial cytopathy (cellular disorder),” the authors wrote. “For one of our 25 patients [Hannah, who DOES have autism, contrary to claims by Gerberding, Offit et al, who erroneously insisted, without ever meeting the child, that she only had “features” of autism], the child’s autism/neurodevelopmental deterioration appeared to follow vaccination. Although there may have been a temporal relationship of the events in this case, such timing does not prove causation.”

Maybe not – but one must wonder, then, why medical personnel at HHS’s Vaccine Injury Compensation Program conceded that the “cause” of Hannah’s “autistic encephalopathy” was “vaccine induced fever and immune stimulation that exceeded metabolic reserves.”

Inserts are David’s.

Lots of things to cover here. Firstly, David says “VACCINES MAY PLAY A ROLE” whereas the study authors say: “..the child’s autism/neurodevelopmental deterioration appeared to follow vaccination. Although there may have been a temporal relationship of the events in this case, such timing does not prove causation.”

I think its pretty clear that the study authors are – at best – dubious that vaccines played a role. They are simply saying what the rest of us have always said: correlation does not equal causation.

David once again insists that HHS medical personnel “conceded that the “cause” of Hannah’s “autistic encephalopathy” was “vaccine induced fever and immune stimulation that exceeded metabolic reserves.””

Where?

I asked twice in the comment thread that followed where this HHS document was and if we, the general public, could read for ourselves – and in context – these words. I am not suggesting David is lying at all. However, by his own admission David has been wrong more than once on what were previously firmly held opinions. This is nothing that should be being speculated about. We need to see this document.

Lastly, Gerberding, Offit et al were quite right to use the phrase ‘features of autism’. That is the phrase that both the HHS report and the case study (co-authored Jon Poling) used. Some say it is hair splitting but I don’t believe that saying someone has autism is the same as saying someone has features of autism. I’ve expounded on this before for those interested but suffice it to say I have a similar eye colour to Clive Owen. This doesn’t make me Clive Owen (much to my wife’s disappointment).

David goes on:

When I first reported this story, the researcher I spoke to told me there had been 30 children in the study, and two of them (8%) showed signs of brain injury from vaccines. Of the five children since excluded from the final published review, one must have been the second vaccine-related regression.

I very much think David might have been incorrect about that. I’m reasonably sure that Dr Kelley would not have referred to ‘brain injury from vaccines’. Given that the study he has just put his name to has cast doubt on that idea I don’t think its a valid idea.

There follows a series of what can only be called strawmen- this study didn’t do this, didn’t do that etc. For example:

….we now find out that nine of the children (36%) had so-called “multiple regressions,” and nothing in this review indicates that any attempt was made to determine if vaccines, febrile infections, or some other factors acted as triggers in the subsequent regressive episodes.

But in the sentence immediately before that David says:

Most of the children had regressed following illness-induced fever, the doctor told me.

The answer to the ‘question’ is right there. One regression, two regressions, twelve regressions – the Doctor states that regression followed illness-induced fever. In other words, given that these doctors know what caused the regressions why would it be necessary to look for something else? Something else that the authors have stated fairly clearly they don’t see any evidence for. However, as befits scientists discussing something both fairly new and of large public interest, they are careful:

Large, population-based studies will be needed to identify a possible relationship of vaccination with autistic regression in persons with mitochondrial cytopathies.

Thats fair enough I think. However I also think its going to be difficult. Sander Greenland made it very clear that detecting the hypothetical ‘clear;y regressive autism’ (i.e. autism caused by vaccines) was going to be next to impossible in large population-based studies, stating the the case amount was so small it would be pretty much undetectable by epidemiology. How to perform the kind of studies necessary to prove/disprove a relationship in such a small amount I have no idea. We’re basically trying to prove that vaccines trigger a mitochondrial cytopathy that leads to autism in – no matter what David thinks – is a pretty small group of people:

28% of people have a regressive form of autism. In 2003 at a LADDERS conference in Boston, Kelley postulated that 20% of regressive autism is due to mitochondrial cytopathies. CDC says that approx 560,000 of autistic people in the US are between 0 – 21. Therefore 28% of 560,000 = 156,800. 20% of 156,000 = 31,360. That’s about 5.6% of autistic children.

Rare? Not sure. Common? Hardly.

Expert opinions on vaccines and mitochondrial disorders

7 Nov

ResearchBlogging.orgThe Hannah Poling case has raised many questions about vaccines and metabolic disorders (of which mitochondrial disorders is a subset). Which is a way of saying, yes, the paper we are about to discuss covers more than just mitochondria. But, would you have read this if you saw the title of the paper:


Attitudes regarding vaccination among practitioners of clinical biochemical genetics

But, don’t let that stop you. The paper takes a look at questions asked by many since the Hannah Poling case went public:

The issue of vaccination in patients with diagnosed—or undiagnosed—metabolic disease has been an important question for those of us who care for patients with inborn errors of metabolism, but has come to the fore recently as an item of general interest.

While it is acknowledged that there is a lack of hard data on many questions, the paper’s authors polled experts in the field with a series of questions about vaccines. For experts, they chose members of the Society for Inherited Metabolic Disorders (for which there were 379 email addresses: that gives us an idea of how specialized this field is). They received 111 responses. But, it is worth noting that they requested one response from each group, not individual, so they consider this to be a fairly complete response.

So, what do these experts think about vaccines and their patients with metabolic disease (mitochondrial or otherwise)?

When asked, to respond to the position: ‘‘I view the risk of vaccination in known metabolic disease patients to generally be outweighed by the risk of the infectious diseases being vaccinated against”

63.2% strongly agreed
31.1% agreed
0.9% disagreed
and 0.9% strongly disagreed.

Asked about the opinion that the risk of vaccination in metabolic disease was ‘‘greater than the risk of the infectious diseases being vaccinated against”

52.9% strongly disagreed
40% disagreed
3.5% agreed
and none strongly agreed

One idea that has been floating around the autism blogosphere and discussion groups is that metabolic specialists prefer an alternate vaccine schedule. Well, only 21.3% said that they recommend the routine vaccination schedule, it is true. But, 73.1% use the routine schedule plus the annual influenza vaccination. 5.6% recommended a modified schedule. If you’ve been adding this up in your head, you already know that none indicated no vaccination.

Since this is such a key question, let’s repeat: over 90% use the recommended schedule or the recommended schedule plus the flu vaccine.

Similar trends were noted for live-virus vaccines:

45.7% recommending restriction of the practice for none of their metabolic disease patients
44.8% for a few
6.7% for most
2.9% for all of their patients

A big question that comes up often is “how many Hannah Polings are there?”, which in this community is a fairly narrow question of “how many people have had adverse reactions to vaccines resulting in autism or autistic-features”. The paper asks the more broad question, how many groups have seen a patient suffer “long-term deterioration or adverse outcome attributable to a vaccination:

78.3% ‘‘never”
8.5% ‘‘once”
12.3% ‘‘seldom”seen this in a patient

Again, this is not to say that autism or autistic features were seen, or that mitochondrial disease was the metabolic disorder linked in the deterioration. The group is more broad than that.

Now, the flip side of that coin: how many groups have seen long term deterioration from a vaccine preventable disease:

48.5% replied they had ‘‘never” seen this
12.1% ‘‘once”
33% ‘‘seldom”
3% ‘‘routinely”
3.0% ‘‘frequently seen this in a patient

Asked if whether ‘‘the benefits of the current vaccination schedule outweigh the risks to patients with undiagnosed metabolic disease in the general population,”

64.8% strongly agreed
27.8% agreed
4.6% disagreed or strongly disagreed

An open ended question was posed as to whether there were ‘‘reasonable health policy changes you would make regarding undiagnosed metabolic disease patients”. 43 groups responded, 29 said no, 4 said “no” or “not sure” and 1 suggested adding additional influenza and/or pneumococcal vaccine. A few stressed evaluation by IEM specialist in any case with deterioration after vaccination.

There is some more. All good stuff. But, I am at risk of basically copying the entire paper here if I add it.

If there is one thing to take away from this, it’s the concluding paragraph:

In summary, it is clear that the general opinion held by practitioners in the field of Clinical Biochemical Genetics favors the full schedule of vaccination for their patients. The overwhelming majority also feel that the benefits of the current schedule outweigh the risks to individuals with undiagnosed metabolic disease. Most have never observed any significant adverse event which was attributed to a vaccine reaction. Some respondents have seen the association once or seldom in their careers, but none felt it to be frequent. The fact that there were few encountered events of long-term deterioration due to a disease for which vaccination is available probably simply reflects the low incidence of those diseases, due to the effectiveness of vaccination practices. A panoply of questions remain, however, and there is a great need for more data.

B BARSHOP, M SUMMAR (2008). Attitudes regarding vaccination among practitioners of clinical biochemical genetics Molecular Genetics and Metabolism, 95 (1-2), 1-2 DOI: 10.1016/j.ymgme.2008.08.001

The next mito-autism case?

20 Oct

It’s been nearly a year since the first autism/mitochondria case was conceded. The question of mitochondrial dysfunction and autism has evolved significantly in the minds of the public and insiders in that time.

Shortly after the concession, Tom Powers, lead attorney for the petitions was asked

.”..whether this was a possible break in the case, he replied that the particular case dealt with a claimant who had a diagnosed mitochondrial disorder. As a result, it probably won’t have much of an effect on the other cases.”

It wasn’t really on the radar for the Petitioners.

But, that was in December of 2007. In February of 2008, the concession document was leaked, followed by TV, online and print news-stories on the topic. Coincidentally, mitochondria and autism has changed from not “much of an effect on the other cases” to some people claiming as much as 1/2 of the Autism Omnibus cases being associated with mitochondria.

We’ve seen one Omnibus test case removed from the Omnibus because, the parents claim, the child’s case needs to be argued as a mitochondrial dysfunction case. We’ve gone from diagnosing mitochondrial dysfunction involving a difficult task of many tests and specialist’s opinions, to the point where David Kirby, a blogger, claims to be identifying mitochondrial dysfunction based on parental reports. We now have self-taught “experts” ready to answer questions on discussion boards about mitochondrial disorders, one of the extreme specialties of medicine.

While this is all lamentable, we now have the first “test case” for the mitochondrial autism notion, post concession. A family is arguing mitochondrial disorder (or an oxygen depletion disorder).

The case has gone through the first steps in the Court of Federal Claims (the “vaccine court”). The case hasn’t concluded, but a decision has been published. To summarize:

First, note that the parents are representing themselves, it appears. The decision notes:

On August 29, 2008, petitioners filed a Reply to the Order, making two assertions: (1) [The child] suffered from a mitochondrial disorder and oxygen depletion disorder which a later vaccination significantly aggravated, leading to autistic like symptoms (somewhat similar to the Hannah Poling case that respondent agreed to compensate); and (2) the vaccinations which [the child] received caused him mercury poisoning from thimerosal or ethyl mercury (which is the subject matter of the second round of autism cases in the Omnibus Autism Proceeding, the first round of cases having to do with MMR and autism).

Tthey seem to be both arguing the mitochondrial disorder idea and the Omnibus thimerosal theory. In support, they gave no expert medical reports. Instead, they submitted a single paper (which presumably is supposed to cover both, very different assertions):

by D.S. Baskin, et al., entitled “Thimerosal Induces DNA Breaks, Caspase-3 Activation, Membrane Damage, and Cell Death in Cultured Human Neurons and Fibroblasts,” published in 74 Toxicological Sciences (2003), available on the internet.

That’s really thin evidence (as discussed at some length by the Special Master). Some sort of expert report should link the theory to the specific child. The parents state:

They have not filed a medical report in support of their assertion of significant aggravation of [the child’s] autistic like disorder, claiming that no doctor would risk criticism from the medical community by providing such a report.

Anyone want to volunteer some names of people who would risk the criticism?

But, seriously, diagnosing a mitochondrial disorder is not a simple task. This isn’t something a parent (or David Kirby) can do by looking for similar markers to another case. Heck, it isn’t as though all the biomarkers for the conceded case are universally accepted by mitochondrial experts.

With such little support for the case, the Special Master was forced to conclude:

Petitioners have still not proved their assertion of significant aggravation.

Basically, the decision ends with a statement that the family has not made its case, but they have a chance to come back with a status report as to what their intentions are.

They have already signaled a possible intention:

Petitioners express an interest in suing civilly.

This case is built on even thinner evidence than most internet-discussion-group claims. At least with those, there are challenge tests, porphyrin tests or some other questionable test, together with the opinion of the doctor who ordered the questionable tests to support an idea of “mercury poisoning” or some such diagnosis. But here, we seem to have: the child is autistic, therefore it is mercury and/or mitochondrial disorder aggravated by vaccines.

The Special Master gave the family information on how to contact a lawyer familiar with the vaccine court. I hope, for their sake, they did. I doubt it will have much of an effect on their case, but at least they would have some advice as they move forward to civil court–where the expenses will be charged to the family.

Jon Poling – no such thing as bad publicity

4 Oct

As broken by Kathleen and discussed further by Kristina, the Poling saga has taken another nasty twist and reveals the ‘respected’ Jon Poling as a scientist lacking even the most basic of scientific scruples.

In a series of three letters from Jon Poling, his co-authors Frye, Zimmerman and Shoffner and lastly Roger Brumback, the editor of the Journal that published their case study of Hannah Poling, Jon Poling is revealed as a man perfectly prepared to game the system.

In his letter, editor Roger Brumback says (he calls his letter ‘the Appalling Poling Saga’) he says:

In the United States Federal Register of May 21, 2003 (volume 68, number 98), on page 27829, there is an entry (“145. Terry and Jon Poling on behalf of Hannah Poling, Vienna, Virginia, Court of Federal Claims Number 02-1466V”) mentioning a filing under the National Vaccine Injury Compensation Program listing of petitions received. This occurred before the manuscript was submitted for consideration by JCN and clearly represents a conflict of interest. Yet the authors made a definitive statement to the Editor-in-Chief and to potential peer reviewers that there was no conflict of interest (Figure 1).

Let no one tell you any different. Jon Poling did not ‘forget’ to tell the publishing journal about the fact his daughter was part of the Autism Omnibus, he purposefully misled the Editor-in-Chief by stating conclusively there was no conflict of interest. Being a gentleman, Brumback avoids calling Poling an out-and-out liar. Brumback goes on to say:

Although, according to the leaked testimony (available to be viewed on numerous websites) [Brumback is referring to the testimony leaked to David Kirby – KL], it does not appear that the JCN article was used in the legal proceedings, media linkage of the published article to the legal outcome implies scientific support from JCN for this legal opinion. Of course it is possible to view this media exposure along the lines of the quip: “There is no such thing as bad publicity—just publicity”.

Quite.

Two things stand out for me – aside from this pathetic litany of dishonesty of course.

Firstly, Jon Poling is his letter says:

A third party subsequently leaked, without our knowledge or permission, my daughter’s
identity and the government’s concession report to the media.

Now lets have a look at this timeline. ‘The media’ Poling is referring to above is David Kirby who posted the details to the HuffPo on Feb 26.

Starting a bare 9 days later, the Polings are holding a press conference, being interviewed on Good Morning America, Larry King Live, Cable News Network, USA Today and The Atlanta Journal-Constitution.

Wow. I guess Brumback is right – there is no such thing as bad publicity because in little over a week, the totally non-media savvy Poling’s had managed to get themselves interviews on the leading media outlets in the USA. And they expect us to believe they did it ‘without our knowledge’ of the documents being leaked to quote Poling.

Something else really stands out from Poling’s letter. Its this:

2001. Because our daughter has diagnoses of autism, regressive encephalopathy, and mitochondrial dysfunction, her case was placed in the Omnibus Autism Proceedings.

Before HHS government physicians conceded that Hannah’s July 2000 vaccinations triggered her encephalopathy…..

Woah there…..what? Triggered her _what_ ? Encephalopathy? Thats funny because David Kirby and the anti-vaccine world has been swearing up and down the HHS conceded her vaccinations triggered her _autism_ .

This is a true bombshell. Jon Poling, Hannah’s father has just stated that HHS conceded vaccinations caused her encephalopathy as oppose to her autism. He’s quite clear and specific. In the first paragraph I quote he lists three separate things:

….autism, regressive encephalopathy, and mitochondrial dysfunction…

and in the second, he states which of these three HHS conceded was triggered by vaccinations. Encephalopathy. Not autism.

Next time anyone tells you HHS conceded Hannah Poling’s autism was caused by vaccines, point them here where they can read the words of her father.

Good Information being spread on Capital Hill

2 Oct

Last week, there was a briefing for U.S. legislators by Mr. David Kirby and Mr. Mark Blaxill. As you can imagine, the topic was vaccines and autism. As you can imagine, there were some inaccuracies and there was at least one outright misrepresentation.

I applauded an effort by Amy Pisani of Every Child By Two, who wrote the staffers ahead of the meeting. I was also appreciative of a letter by Voices For Vaccines.

Well, now I give a great big thank you to Congressman Waxman. Congressman Waxman is the chair of the Congressional Committee on Oversight and Reform. To put that in perspective, “Oversight and Reform” is the committee that Congressman Dan Burton used to investigate autism and vaccines. (a very good discussion of what went wrong there is in Autism’s False Prophets).

Congressman Waxman’s office sent out a “Dear Colleague” letter. It is a good, succinct discussion of autism and vaccines, and, as such, I think it worth posting. And forwarding to people who may have questions about this issue.

It’s also worth thanking Congressman Waxman for taking the time to work on autism issues.

Resources Regarding Vaccines and Autism

October 1, 2008

Dear Colleague,

Since 1998 some people have been raising concerns that there may be an
association between childhood immunizations and autism spectrum
disorder. I am writing to let you and your staff know that there are a
number of resources available to understand what the science says
about whether vaccines could contribute to autism.

Institute of Medicine report on vaccines and autism

In 1999 the Department of Health and Human Services contracted with
the Institute of Medicine (IOM) to review a number of different
vaccine safety issues and to make recommendations about future
research needs. IOM convened a committee of experts that was carefully
vetted for conflicts of interest. The committee issued nine reports,
all of which are available on line at: http://www.iom.edu/CMS/3793/4705.aspx.

In 2004, the committee issued its final report, which analyzed the
studies, published and unpublished, that looked at two theories:
whether the Measles-Mumps-Rubella (MMR) vaccine could cause autism;
and whether the mercury-containing vaccine preservative thimerosal
could cause autism. The committee concluded that the “evidence favors
rejection of a causal relationship between thimerosal-containing
vaccines and autism” and the committee also concluded that the
“evidence favors rejection of a causal relationship between MMR
vaccine and autism.” This report is available at:
http://www.iom.edu/CMS/3793/4705/20155.aspx.

Other resources on vaccines and vaccine safety

Since the IOM report was published there have been additional studies
that looked at a possible link between vaccines and autism. Below are
several other links to government or private organizations with
helpful information about the latest research into vaccines, vaccine
safety, and autism and vaccines:

The Centers for Disease Control and Prevention
http://www.cdc.gov/ncbddd/autism/vaccines.htm

National Network for Immunization Information
http://www.immunizationinfo.org

Institute for Vaccine Safety at Johns Hopkins University
http://www.vaccinesafety.edu

American Academy of Pediatrics
http://www.aap.org/healthtopics/Immunizations.cfm

Information regarding mitochondrial disorders and vaccines

Another concern that has received some attention is whether people
with mitochondrial disorders are more susceptible to vaccine injury.
This issue was in the media after it became public that in 2007, the
Vaccine Injury Compensation Program (VICP), the no-fault compensation
program for people who have been injured by immunizations, compensated
nine-year-old Hannah Poling for injuries she sustained from her
immunizations. Hannah Poling suffered from a mitochondrial disorder,
which is a genetic or acquired defect in the part of each cell that
helps produce energy. People with these disorders are susceptible to a
number of stressors, including fever, illness, dehydration and certain
kinds of medication. In Hannah Poling’s case, after her immunizations
she developed a fever, lethargy, irritability, and other symptoms of
encephalopathy. These symptoms worsened over a period of months to
includ! e muscle weakness and features of autism. Instead of taking
this case to the vaccine court, the VICP conceded the case and agreed
to compensate Hannah Poling.

This case raised concerns that there may be an association between
mitochondrial disorders and autism. Mitochondrial disorders are poorly
understood and there is much research that needs to be done. However,
according to the United Mitochondrial Disease Foundation: “There are
no scientific studies documenting that childhood vaccinations cause
mitochondrial diseases or worsen mitochondrial disease symptoms. In
the absence of scientific evidence, the UMDF cannot confirm any
association between mitochondrial diseases and vaccines.” This
statement is available at: http://www.umdf.org/site/c.dnJEKLNqFoG/b.3616911/apps/s/content.asp?ct=5087517.

Following this case, NIH, HHS, and CDC organized a workshop entitled
“Mitochondrial Encephalopathies: Potential Relationships to Autism.”
The workshop was held on June 29, 2008 in order to explore this
complicated topic and panelists included experts from around the
country. The proceedings from this workshop state that because
acquired infections and the associated inflammatory responses are a
known trigger for mitochondrial disease, “the workshop panelists
strongly encourage vaccinations in the hundreds of children they treat
for mitochondrial disease.” A summary of this workshop is available
at: http://www.ninds.nih.gov/news_and_events/proceedings/20090629_mitochondrial.htm

CDC has additional information on its website at:
http://www.cdc.gov/ncbddd/autism/mitochondrial.htm

I hope you find these links useful. If you are interested in other
resources, please do not hesitate to call Sarah Despres or Dr. Stephen
Cha on my staff at 5-5056.

Sincerely,

/s
HENRY A. WAXMAN
Member of Congress

Mitochondrial disease discussion in Indianapolis

29 Sep

You may recall that there was a panel discussion on Mitochondrial Disease and Autism following the United Mitochondrial Disease Foundation’s (UMDF) meeting in Indianapolis. This, of course, was prompted by the news reports of the Hannah Poling case.

If you are looking for the incredibly short answer, quote mine, here it is:

To reduce the risk presented by acquired infections, the workshop panelists strongly encourage vaccinations in the hundreds of children they treat for mitochondrial disease. Among thousands of patients they had collectively seen, very few had deteriorated following vaccination, and in those few cases, it is difficult to determine that other stressors besides the vaccine did not play a role in the neurologic deterioration.

The panel discussion was held June 29th, and the report from that has just been published.

The panel was organized by people from NIH, NINDS, HHS and CDC.

Thomas R. Insel, M.D.
Director, National Institute of Mental Health, National Institutes of Health

Walter Koroshetz, M.D.
Deputy Director, National Institute of Neurological Disorders and Stroke, National Institutes of Health

Daniel Salmon, Ph.D., M.P.H.
Vaccine Safety Specialist, U.S. Department of Health and Human Services

Ed Trevathan, M.D., M.P.H.
Director, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention

The panel included a lot of the names you would expect to hear from:

Kim M. Cecil, Ph.D.
Research Associate Professor, Cincinnati Children’s Hospital Medical Center

Bruce Cohen, M.D.
Department of Neurology, Cleveland Clinic Foundation

Stephen R. Dager, M.D.
Departments of Radiology, Psychiatry, and Bioengineering, University of Washington School of Medicine
Interim Director, University of Washington Autism Center,

Darryl DeVivo, M.D.
Sidney Carter Professor of Neurology and Pediatrics, Columbia University

Salvatore DiMauro, M.D.
Lucy G. Moses Professor of Neurology, Neurological Institute of New York, Columbia University Medical Center

Pauline Filipek, M.D.
Associate Professor of Pediatrics and Neurology, University of California, Irvine

James F. Gusella, Ph.D.
Director, Department of Genetics, Center for Human Genetic Research, Massachusetts General Hospital

Richard Haas, M.D.
Co-Director, Mitochondrial and Metabolic Disease Center, University of California, San Diego, School of Medicine

Robert K. Naviaux, M.D., Ph.D.
Co-Director, Mitochondrial and Metabolic Disease Center, University of California, San Diego, School of Medicine

Joseph Piven, M.D.
Director, Neurodevelopmental Disabilities Research Center, University of North Carolina, Chapel Hill

Roberto Tuchman, M.D.
Director, Autism Programs, Miami Children’s Hospital Dan Marino Center

Douglas Wallace, Ph.D.
Director, Center for Molecular and Mitochondrial Medicine and Genetics, University of California, Irvine

The proceedings are a summary, not a transcript of the actual event. It is a very good summary of what is known about mitochondria and mitochondrial disorders. It’s worth reading, and it is not very long. However, I’ll pull some summary information out here:

Mitochondrial genetics and biology

We all have two sets of DNA–the nuclear DNA (nDNA) that we are used to hearing about as the “blueprints” for inheritance and mitochondrial DNA (mtDNA) that are inside the mitochondria and help with the processes in the mitochondria.

Even though mitochondria are inherited from the mother, mitochondrial disease can involve both the nuclear and mitochondrial DNA, and, thus, mitochondrial diseases have multiple inheritance pathways.

You can have different mtDNA in a single cell or in different tissues–this is called heteroplasmy.

An overview of mitochondrial diseases

There are 200 mtDNA mutations and 2,000 nDNA mutations that can lead to mitochondrial disease. (The nDNA is much bigger than the mtDNA, so it isn’t surprising that more of the mutations are found on the nDNA).

The incidence of mitochondrial disease is between 1-5 in 10,000. But, the understanding is evolving.

Mitochondrial diseases present a very large spectrum. But, some generalizations can be made.

…they are typically progressive and multisystemic, most often affecting organs that have high energy demands such as the brain and nerves, skeletal and cardiac muscle, and the liver and kidneys.

There are a number of possible flags for mitochondrial disease, often when more than one area is affected at once. They noted, when the idea of autism and mitochondrial disease is discussed:

Of particular interest for this workshop, central nervous system manifestations of mitochondrial disease can include hypotonia, seizures, encephalopathy, ataxia, intellectual disabilities, global delay, and brain malformations. Sensory and peripheral nerves can also be affected, leading to deafness, blindness, or neuropathy.

Diagnosing mitochondrial disease

If you’ve already read about diagnosis of mitochondrial disease, you know it is a very complicated process.

The workshop panelists explained that diagnosis is often a lengthy process beginning with a general clinical evaluation followed by metabolic screening and imaging and finally by genetic tests and more invasive biochemical and histological analyses.

Metabolic screening, MRI, genetic testing and enzyme function through biopsy are all noted as tests, but no single test or even set of tests are definitive.

Known triggers of mitochondrial disease

If there is one section that the online autism communities are likely to zero in on, it’s this.

Mitochondrial diseases can go undetected for many years, and many cases display an episodic course with relatively stable periods punctuated by abrupt degeneration that may coincide with an infection or other stress to mitochondrial function.

If you’ve been thinking about this a lot, you’ve probably asked yourself how the mitochondria react during a fever. Fevers are an increase in temperature, which, naturally, takes an increased energy output.

Of possible importance, mitochondria are the major generators of body heat and are therefore extremely active during fever. It is not known whether fever or other aspects of the inflammatory or immune response to a virus or bacteria trigger deterioration after infection

The phrase that probably will be the one take-away for most people in the autism community who have been following the mitochondrial issue:

To reduce the risk presented by acquired infections, the workshop panelists strongly encourage vaccinations in the hundreds of children they treat for mitochondrial disease. Among thousands of patients they had collectively seen, very few had deteriorated following vaccination, and in those few cases, it is difficult to determine that other stressors besides the vaccine did not play a role in the neurologic deterioration.

From what I’ve heard, they were very, very strong in their recommendation for vaccination to protect against infectious disease in this very vulnerable population.

Other triggers include dehyration, reduced caloric intake or, in some cases, exercise.

Environmental causes of mitochondrial impairment: AZT, valproate, statins, chemicals like MPTP and the pesticide rotenone, fungal toxins, and even cigarette smoke and alcohol.

Mitochondrial diseases and autism: clinical parallels and evidence for a relationship

Both Autism and Mitochondrial Disease are broad spectrums. The subtypes for autism are less well defined, making it hard to make good comparison. It is difficult to pull only a couple phrases out of this section, but I will pick two:

Workshop panelists who treat children with mitochondrial disease noted that some of these children have autistic features, and some children eventually found to have mitochondrial disease are initially diagnosed with an ASD. In addition, siblings of children with maternally inherited mitochondrial disorders sometimes present with autism. Presumably, they have inherited the same mitochondrial mutation from their mother, but the mutation may be difficult to find. Workshop panelists who mainly see individuals with a primary diagnosis of autism found parallels with clinical observations in mitochondrial disease such as developmental regression, seizures, and gastrointestinal complications

and,

Additional parallels between ASDs and mitochondrial disease noted by the workshop panelists were in family histories and patterns of inheritance. These included possible maternal inheritance in some ASDs, a similar higher prevalence in males for both ASDs and some mitochondrial diseases, and a high frequency of psychiatric conditions such as depression, delusions and attention deficit disorder in families with mitochondrial disease, including in relatives who seem otherwise unaffected.

Advancing research on the relationship between mitochondrial disease and autism: needs, priorities and emerging tools

This section notes two types of studies which they suggest should be done: a targeted and an unbiased approach.

By targeted they mean a study that

…would involve a thorough investigation of a relatively small ASD population selected for characteristics that indicate a greater likelihood of mitochondrial involvement. Such a strategy might involve more in-depth or invasive testing, including, for example, muscle biopsy and brain imaging with MR spectroscopy.

On the other hand, the unbiased approach:

… would instead survey a larger, more diverse population and could inform questions about the extent to which mitochondrial disease contributes to ASDs more broadly.

From my perspective, both sound like good avenues for research–neither better or more important than the other.

If you are following this subject, I would again urge you to read the entire summary. It isn’t very long. It is unfortunate that people (myself included) will pull bits and pieces out.