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Mitochondra and vaccines – the science

23 Apr

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

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

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

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

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

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

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

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

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

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

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

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

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

And then there is the killer quote:

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

He’s absolutely right of course.

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

Frustration

20 Apr

One of the most frustrating things about blogging the unfolding vaccine>mitochondria>autism hypothesis is that a lot of the doctors who are experts in the field of mitochondria don’t want to publicly comment. A lot of them feel quite rightly that there is a certain element who are not the most balanced of individuals and they don’t really want to expose themselves to these people. That I can definitely empathise with.

However it does, as one of them has admitted themselves, leave the field wide open to (and I quote directly from one of these doctors):

….legions of mountebanks eager to pad their retirement funds at the expense of desperate parents…

So when a very well respected mitochondria researcher says the following all I can do is post it and not attribute it and hope that it can be read and believed. Of course, the fact it appears on this blog will no doubt cause some to dismiss it entirely but I would urge them not to do so. Please remember that kids with mitochondrial issues are a whole new ball game. Talking their parents out of vaccinating them could very well kill them.

…..I do not know of any evidence connecting mercury and mitochondrial disease. There is no evidence connecting vaccination with mitochondrial diseases: certainly vaccinations do not cause mitochondrial diseases. Whether they may act as transient stressors, like intercurrent URIs do, remains to be determined. Clearly, energy-challenged children with mitochondrial diseases need to be protected from potentially deadly infections through vaccination.

Mitochondria, autism and thimerosal

18 Apr

The whole mitochondria/autism thing is pretty fascinating. A Dr Shoffner presented the results of a study he conducted (‘Mitochondrial Dysfunction May Play a Role in Autism Spectrum Disorders Etiology‘ – its free registration at Medscape to read the whole thing) in which he noted:

a retrospective analysis of 41 children with ASD who were being evaluated for suspected mitochondrial disease showed that 32 (78%) had defects in skeletal muscle oxidative phosphorylation (OXPHOS) enzyme function and 29 of 39 (74%) harbored abnormalities in the OXPHOS proteins.

The numbers kind of leap out at you don’t they?

Except, we need to remember that this is a heavily skewed population. As SL has pointed out:

I can’t state it enough: this is NOT a random sample of autistic individuals. These are children who were already suspected of having a mitochondrial disorder.

Which is a bit like looking for wet kids at a swimming pool. It doesn’t really tell us anything about autism aetiology. It tells us that some kids who are autistic also have mitochondrial dysfunction. Reading anything concrete into that is just like reading anything concrete into the fact that autism symptoms become clear around the time vaccines are administered – correlation does not equal causation after all.

Dr Shoffner is unavailable right now but I have dropped an email off with him asking if he would be kind enough to make his presentation available. We’ll see.

In the meantime it should be noted that there are other highly respected mitochondrial researchers who are not pleased with the way that Dr’s Poling and Shoffner have conducted themselves. A researcher I am talking with commented:

….more harm than good has been done this time by Shoffner’s and Poling’s whipping up controversy but not providing the hard data that everyone needs….. Therefore, again, I ask that you serve the public good by not trying to ferret out partial data and incomplete statements from me or others, trust that nothing is being hidden by anyone, and wait for the full story to appear in a medical journal……offer assurance to your readers that the true story will be told and that misstatements of the legions of the uninformed and conspiracy mongers who are pursuing their own selfish aims will ultimately be revealed.

Strong words from someone who clearly feels that Shoffner and Poling are doing what they’re doing solely to be controversial.

So that seems to be the state of research regarding a mitochondrial aetiology for autism. Patchy and sensationalist with a clear agenda to serve personal interests.

However, as we all know, there are a group of people who want to take the autism/mito thing one step further and blame vaccines for triggering an occluded mitochondrial dysfunction which in turn causes autism. Its like a minor league domino effect with only three domino’s. Again, it reminds me very much of the early days of the thiomersal/MMR hypotheses – look for a direct cause and when one can’t be found, look for an indirect one and twist, twist, twist until you can argue for one.

Our old friend Ginger Taylor has, for example, been hopping from online newspaper to online newspaper saying in their comments section that:

The debate is over. Our highest health authorities have stated that vaccines are a cause of autism.

When in fact no such statement exists. Ginger is arguing that ‘features of autism’ is the same as a diagnosis of autism. Back in the real world of autism diagnostics, that is not the case.

So – what can we do to examine the hypothesis that thimerosal triggers mitochondrial dysfunction which in turn triggers autism? We could search for papers that mention thimerosal and mitochondria. When we do we get:

1: Yel L, Brown LE, Su K, Gollapudi S, Gupta S.
Thimerosal induces neuronal cell apoptosis by causing cytochrome c and apoptosis-inducing factor release from mitochondria.
Int J Mol Med. 2005 Dec;16(6):971-7.
PMID: 16273274 [PubMed – indexed for MEDLINE]

2: Humphrey ML, Cole MP, Pendergrass JC, Kiningham KK.
Mitochondrial mediated thimerosal-induced apoptosis in a human neuroblastoma cell line (SK-N-SH).
Neurotoxicology. 2005 Jun;26(3):407-16.
PMID: 15869795 [PubMed – indexed for MEDLINE]

3: Makani S, Gollapudi S, Yel L, Chiplunkar S, Gupta S.
Biochemical and molecular basis of thimerosal-induced apoptosis in T cells: a major role of mitochondrial pathway.
Genes Immun. 2002 Aug;3(5):270-8.
PMID: 12140745 [PubMed – indexed for MEDLINE]

4: Collin HB, Carroll N.
In vivo effects of thimerosal on the rabbit corneal endothelium: an ultrastructural study.
Am J Optom Physiol Opt. 1987 Feb;64(2):123-30.
PMID: 3826286 [PubMed – indexed for MEDLINE]

5: Collin HB.
Ultrastructural changes to corneal stromal cells due to ophthalmic preservatives.
Acta Ophthalmol (Copenh). 1986 Feb;64(1):72-8.
PMID: 3083641 [PubMed – indexed for MEDLINE]

6: Van Horn DL, Edelhauser HF, Prodanovich G, Eiferman R, Pederson HF.
Effect of the ophthalmic preservative thimerosal on rabbit and human corneal endothelium.
Invest Ophthalmol Vis Sci. 1977 Apr;16(4):273-80.

Of these, studies 4, 5 and 6 are not relevant – they’re talking about eyes. Its studies 1, 2 and 3 on this list that are articulatory relevant to us in our search for papers touching on vaccines>mito>autism. If anyone else finds any, please let me know in the comments section.

Now, these three studies are not supportive of the vaccines>mito connection. Why? They use frankly massive concentrations of thiomersal, way beyond whats contained in a vaccine. A quote from a scientist about these studies:

all of the studies used “non-physiological” concentrations of thimerosal – concentrations that would not be reached even by giving three or four (or even ten or twenty) high-thimerosal-containing vaccines to a low-weight and/or premature infant.

You can kill mitochondria with glutamate (an amino acid found in chicken soup, among other things), salt, oxygen, and a number of other things, if you use ENOUGH of it. The studies are not relevant…..because the concentrations used are so high – by a factor of at least 100.

So we seem to be back to square one. Whilst the evidence for a mitochondrial aetiology for autism is of mixed provenance and yet seems probable at some level, the evidence for thiomersal and autism-related mitochondrial dysfunction is not good.

Meet the new boss, same as the old boss

8 Apr

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

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

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

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

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

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

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

Anyway, after that she carried on:

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

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

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

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

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

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

Anyway, Ginger carried on:

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

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

Kirby was right, the debate is over.

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

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

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

David Kirby is right (and wrong)

6 Apr

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

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

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

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

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

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

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

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

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

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

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

No decision.

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

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

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

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

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

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

The Next Big Autism Bomb?

28 Mar

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

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

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

The purpose of the call was:

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

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

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

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

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

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

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

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

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

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

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

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

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

And so we move on to the fourth study.

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

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

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

……….

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

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

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

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

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

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

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

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

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

(insertions mine for clarity).

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

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.

Evidence of Misinformation

7 Mar

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

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

Evidence of Misinformation # 1

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

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

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

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

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

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

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

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

Evidence of Misinformation #2:

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

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

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

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

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

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

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

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

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

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

Evidence of Misinformation #3:

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

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

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

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

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

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

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

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