Archive | Hannah Poling RSS feed for this section

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.

An Open Letter To The Poling’s

12 Apr

Dear Poling family,

Let me first start by saying that your little girl is beautiful. I am father to two girls (as well as one boy, young man now actually) so I know how great it is to have such wonderful little people around.

I read Jon Poling’s commentary in the AJC and I have to say that I was very disappointed by the level of accuracy in the piece. For example, he says:

On Nov. 9, 2007, HHS medical experts conceded through the Department of Justice that Hannah’s autism was triggered by nine childhood vaccinations administered when she was 19 months of age…

Now I have taken a keen interest in your families case since it became clear what the situation was. I _think_ I have read most of the newspaper reports available online as well as (more importantly) the HHS document itself and (even more importantly) the case study co-authored by Andrew Zimmerman and Jon Poling.

Nowhere, I repeat, nowhere, have I seen anyone from either the HHS, CDC, US Government, or even the Zimmerman/Poling case study say that ‘Hannah’s autism was triggered by nine childhood vaccinations’.

I have seen David Kirby refer to this several times. I have heard lots of people refer to these statements as if they are true and now I hear you doing it too.

But where is this concession?

In what legal, scientific or medical document does it state unequivocally that ‘Hannah’s autism was triggered by nine childhood vaccinations’?

You are a family on the cusp of storm. You need to take more care with your statements. People all over the world are listening. The *fact* as of right now is that no one has conceded ‘Hannah’s autism was triggered by nine childhood vaccinations’. Simply stating it as if it were true does not make it true.

The HHS expert documents that led to this concession and accompanying court documents remain sealed, though our family has already permitted release of Hannah’s records to those representing the almost 5, 000 other autistic children awaiting their day in vaccine court.

Now this confuses me on two levels. Firstly, Special Masters have already said that:

….in the case that is the subject of the media reports, if the parties who supplied documents and information in the case provide their written consent, we may then be able to appropriately disclose documents in the case.

It sounds to me like Dr Poling is trying to turn something around onto the HHS without justification. Maybe your legal team haven’t told you about this news. I understand they’re very busy of late.

The second part of Dr Poling’s statement that confuses me is the allusion to the records being released ‘to those representing the almost 5, 000 other autistic children’.

I thought that you wanted your documents to be made entirely public? Are you now saying you only want the legal teams of the other omnibus lawyers to have access to them?

I would also like to draw your attention to the email I sent to Terry Poling on March 5th asking why the Poling family had not cleared Dr Andrew Zimmerman from speaking publicly about the case. Does the Poling fmaily have any intention of lifting that embargo any time soon?

Dr Poling goes on:

Emerging evidence suggests that mitochondrial dysfunction may not be rare at all among children with autism. In the only population-based study of its kind, Portuguese researchers confirmed that at least 7.2 percent, and perhaps as many as 20 percent, of autistic children exhibit mitochondrial dysfunction. While we do not yet know a precise U.S. rate, 7.2 percent to 20 percent of children does not qualify as “rare.” In fact, mitochondrial dysfunction may be the most common medical condition associated with autism.

This is very disingenuous Dr Poling. I am not sure if you are purposefully distorting the truth or simply not as knowledgeable as you think. In point of fact the figure of 7.2% is from a 2005 study ‘Mitochondrial dysfunction in autism spectrum disorders: a population-based study‘. This is _not_ (as you state) ‘the only population-based study of its kind’. It was in fact a precursor to a _second_ follow up study by the same lead researcher correcting his own data.

This second study (published October 2007) is called ‘Epidemiology of autism spectrum disorder in Portugal: prevalence, clinical characterization, and medical conditions’.

This study declares a 4.1% figure. It is disingenuous in the extreme to refer to old science when newer, more accurate science exists on the subject (and by the same author no less!).

Further, as far as I can tell, the figure of 20% has but one source – a non published 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. This is not ’emerging science’ Dr Poling. Its a set of program notes.

Further, as I understand it from talking to people involved in all three of these different items, the percentages you talk about are expressed percentages _of regressive autism only_ . Now I might have that wrong but I’m pretty sure that’s what was communicated to me.

Taking this into account, when Dr Poling states that:

In fact, mitochondrial dysfunction may be the most common medical condition associated with autism..

and he goes on to suggest population numbers between 10,000 (1%) , 72,000 (7.2%) and 200,000 (20%) of the autistic population he estimates at one million in the US, he is incorrect.

However, if I have understood what is said to me then we need to look at regressive autism numbers only, which are estimated to account for 25%-30% of autistic people. Therefore we are looking at not 7.2% or 20% (one is incorrect, one is not scientifically justified) of one million. We are actually looking at 4.1% (the only scientifically valid number) of between 25 – 30% of one million. Lets take the upper figure of 30%. This gives us a population of 300,000 for regressive autism. Applying the 4.1% estimate we can see that – at best and only if this data is all correct – mitochondrial autism may affect about 13,000 autistic people – 1.3%. If we took the lower range of 25% for regressive autism, we barely get over 1% (10,250).

Secondly, it should be noted that approximately 40% of autism can be accounted for genetically. This already makes it the single largest established cause(s).

Dr Poling goes on to say:

Today there is no doubt that mitochondrial dysfunction represents a distinct autism subpopulation biological marker.

This is true. However, prefacing this sentence with the word ‘today’ gives the highly misleading impression that autism has been associated with mitochondrial disorders and/or dysfunctions only since Hannah Poling came into out collective conciousness. This is far from the case. I can find instances in the scientific literature going back to 1986, over 20 years ago discussing mitochondria and autism and a PubMed search for ‘mitochondrial autism’ yields 34 quality papers published over a 20 year period. This is hardly a new thing Dr Poling.

As a neurologist, I have cared for those afflicted with SSPE (a rare but dreaded neurological complication of measles), paralytic polio and tetanus. If these serious vaccine-preventable diseases again become commonplace, the fault will rest solely on the shoulders of public health leaders and policymakers who have failed to heed the writing on the wall (scribbled by my 9-year old daughter).

I fear that this is projection. You are very close to pushing an anti-vaccine agenda Dr Poling and indeed Terry Poling was active an the Yahoo Group ‘Recovered Kids’ from at least Summer 2001 where she says things like:

Really, the only way to obliterate a disease is to vaccinate everybody – or at least so “they” say

Sept 2001.

Had I told the hospital staff she was autistic they would not have believed me. The same held true for a (sic) educational consultant who came to evaluate hannah the day before the fever started. She said in her report she saw absolutely no autistic behaviors.

Nov 2001.

She has mitochondrial disease which causes her autism.

March 2004.

I do know docs that speak for drug companies but they cover all the meds for a particular disease in their talks with other docs. If they do not agree that the drug is best for certain conditions on the whole they say so.

Feb 2003.

…it [autism] is a DSM set of symptoms. When the symptoms disappear you cannot say the child still has autism…..

Oct 2001.

So Dr Poling when you try to lay the blame for vaccine preventable injuries increasing at the foot of those agencies assigned to try and stop them reappearing I think that is farcical. To me it is clear that the main responsibility lies with those who shun what are by and large safe safe vaccines on the strength of a hypothesis that is nowhere _close_ to scientific truth. I urge you to read this article and the comments left by readers. Its clear who they see as responsible. For example:

Don’t want to vaccinate your kids? Fine with me. Just don’t send them to school where they then put my kids at risk because of your decision.

You are deluding yourself if you think you can turn responsibility for shunning vaccines back on health agencies Dr Poling.

All in all Dr and nurse Poling I think that your public use of misinformation and erroneous science to make your point will serve you no good in the long run. I also continue to be puzzled by your refusal to ‘ungag’ Andrew Zimmerman. I hope you can start to realise that what has ‘happened’ to Hannah is far from remarkable. Best wishes from one autism parent to another.

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.

Paul Offit causes a stir

1 Apr

On 31st March, Dr Paul Offit wrote an op-ed piece for the New York Times entitled Inoculated Against Facts in which he discussed the recent Poling situation.

In response to this, David Kirby wrote a blistering response entitled Lies My New York Times Told Me (Or, Why Trust a Doctor Who Says 10,000 Shots Are Safe?).

Offit says:

An expert who testified in court on the Polings’ behalf claimed that the five vaccines had stressed Hannah’s already weakened cells, worsening her disorder. Without holding a hearing on the matter, the court conceded that the claim was biologically plausible.

To which Kirby responded:

no one “testified in court” in this case, as confusingly stated by Dr. Offit, who also writes that, “Without holding a hearing… the court conceded.”

My take on what Offit said was that any document submitted as part of a legal process must, by definition, form part of a courts records and thus be considered testimony. I think there’s a difference between ‘heard in court’ (heard as part of a legal proceeding) and ‘a hearing’ (discussed in open court)

Kirby also says:

It was a medical concession, not a legal decision. Dr. Offit and the New York Times know this.

Its also (as I understand it) part of the process that the Special Master could’ve refused to accept the so-called concession. This makes the fact they did a legal decision. The Poling’s could’ve elected to have their daughters case heard in a civil court (I think) in which case they really would’ve been held to a medical/scientific standard of proof. They chose not to do so.

Kirby goes on:

This statement, too, is misleading: “Even five vaccines at once would not place an unusually high burden on a child’s immune system.”……Hannah received five shots, but nine vaccines.

Which, to be fair to Dr Offit is exactly what he said:

In 2000, when Hannah was 19 months old, she received five shots against nine infectious diseases.

I think this is merely a semantic misunderstanding as to what constitutes ‘one’ vaccine.

Kirby goes on:

More importantly, Dr. Offit’s statement contradicts the second HHS concession (for epilepsy) in the Poling case, to wit:

The cause for autistic encephalopathy in Hannah “was underlying mitochondrial dysfunction, exacerbated by vaccine-induced fever and immune stimulation that exceeded metabolic reserves.”

Now, lets be honest – nobody aside from David Kirby has actually _seen_ this second HHS ‘concession’. I can’t help but note that the part that Mr Kirby quotes from this second report does not contain the phrase ‘autistic encephalopathy’ (and what exactly _is_ ‘autistic encephalopathy’?). I also think its a little unfair to expect Dr Offit to be a mind reader and know what an unreleased report says.

I further think that in a piece that asks why we should just trust, Mr Kirby (with all due respect to him) asking us to do the exact same thing is a little incongruous.

We really need this issue sorted out by either releasing this document that directly ties a diagnosis of autism _directly_ to vaccines, or by applying the same rules to everyone.

Mr Kirby then goes on to challenge Dr Offits most (in)famous statement:

“Our analysis shows that infants have the theoretical capacity to respond to about 10,000 vaccines at once”

This is slightly disingenuous as this really has no bearing whatsoever on the Poling case. Its also – as stated by Dr Offit – a _theoretical_ scenario. No one is seriously suggesting any infant has 10,000 shots. The paper from Dr Offit used this calculation to respond to the idea that vaccines can overwhelm the immune system.

And lets be clear. This is science. Good science. To the best of my knowledge no-one has refuted it in any reputable journal. If anyone has an issue with the overall idea (vaccines not overwhelming the immune system) or the maths involved, then they should submit it to a reputable journal for peer review.

However, one of the most disturbing aspects of this turn of events is the response to Dr Offit’s piece on the EoH Yahoo Group. I should note that David Kirby has _no control or ownership of this group_ before I continue.

Within a few hours of Dr Offit’s piece being published, Ginger Taylor took it upon herself to send Dr Offit’s phone number to the EoH group at large, as part of an email conversation she had had with Dr Offit. Thus drew a number of responses from her list mates such as:

Oh no….. His phone number on EOH? Lord help him!

Quite. Although the group moderator was quick to ask people not to harass Dr Offit, he stopped short of deleting this very ill-considered post.

Lets not forget that Dr Offit (and his children) have been the subject of severe harassment from those who believe in an autism/vaccine hypothesis:

….as Paul Offit, a vaccine expert who served on the committee, tried to make his way through the crowd, one of the protestors screamed at him through a megaphone: “The devil—it’s the devil!” One protester held a sign that read “TERRORIST” with a photo of Offit’s face. Just before Offit reached the door, a man dressed in a prison uniform grabbed Offit’s jacket. “It was harrowing,” Offit recalls.

….

He has since received hundreds of malicious and threatening emails, letters and phone calls accusing him of poisoning children and “selling out” to pharmaceutical companies. One phone caller listed the names of Offit’s two young children and the name of their school. One email contained a death threat—”I will hang you by your neck until you’re dead”—that Offit reported to federal investigators.

Knowing this, why Taylor saw fit to do this at all is puzzling. However, when she was asked how she felt about communicating with Dr Offit, she also saw fit to comment:

The whole thing actually creeped me out and I just dropped it.

My personal opinion is that a considered reply from Dr Offit to Taylor which included a friendly invitation to contact him again is not creepy at all. What _is_ creepy (to me) is publishing the phone number of a man who has been subject to vicious abuse – as have his children. To me, it is irresponsible in the extreme.

The Next Big Autism Bomb?

28 Mar

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

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

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

The purpose of the call was:

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

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

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

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

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

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

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

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

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

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

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

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

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

And so we move on to the fourth study.

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

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

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

……….

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

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

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

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

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

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

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

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

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

(insertions mine for clarity).

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

Dear CDC

26 Mar

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

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

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

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

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

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

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

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

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

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

Statement on autism, vaccines and mitochondrial disease

22 Mar

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

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

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

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

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

← Older Entries
Newer Entries →