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Vaccines on the Hill

25 Sep

With a hat-tip to Kim Stagliano at the Age of Autism blog. They got ahold of an email sent by Amy Pisani of Every Child by Two to legislators who were sending staffers to a briefing by Mark Blaxill and David Kirby on vaccines and autism.

Mr. Kirby promised to talk about, amongst other topics, Hannah Poling. That’s not what I would call a good briefing. A good briefing would be if the legislators asked HHS to talk to them about what the concession meant. Somehow, I think the two briefings would be significantly different. Then again, I suspect a briefing by the doctors who are studying that potential cause of developmental regression via mitochondrial dysfunction would also have a very different story to tell than Mr. Kirby. I strongly suspect that.

But, I digress, as I often do. You see, Every Child by Two thought that the legislators who were sending staff to the Kirby/Blaxill briefing should be informed that the information provided by that team was, well, not accepted by the mainstream.

The letter, respecfully written, respectfully submitted is quoted below. One reader of this blog asked Ms. Pisani for permission to reproduce it here. I am using the text from the AoA blog.

Why reproduce it here? Because many in the greater autism community agree with Ms. Pisani. This blogger certainly does. I hope that legislators know that many members of the autism community side with Every Child by Two on this subject.

So, after much delay, here is something written much better than the ramblings I’ve put together:

Today you have been invited to attend a briefing to provide “updates on the recent autism-vaccines debate”. While I recognize that most of you will likely be dealing with other priorities and will not attend the Maloney briefing, I write to you this morning because I feel it is critical to clarify that there is no debate among the scientific community regarding vaccines and autism. Instead, the debate rages on in the media due to the efforts of those who wish to sidetrack critical research away from finding the true cause(s) of autism and treating children and their families struggling with this condition.

‘Last week Dr. Paul Offit’s new book “Autism’s False Prophets, Bad Science, Risky Medicine, and the Search for a Cure” was published by Columbia University Press. This book is a must read for all those concerned with children dealing with autism. The Philadelphia Inquirer writes that “Offit’s account, written in layman’s terms and with the literary skill of good storytellers, provides important insight into the fatal flaws of the key arguments of vaccine alarmists, including such well-known names as Robert F. Kennedy Jr., Sen. Joseph Lieberman (I., Conn.), and Sen. John Kerry (D., Mass.).” And the Wall Street Journal writes “Ever since psychiatrist Leo Kanner identified a neurological condition he called autism in 1943, parents whose children have been diagnosed with the most severe form of the illness — usually in the toddler stage, before age 3 — have found themselves desperately searching for some way not to lose their children to autism’s closed-off world. Unfortunately, such parents have often found misguided doctors, ill-informed psychologists and outright charlatans eager to proffer help.”

In 1999 I was pregnant with my first son just as the questions first arose regarding the MMR vaccine and subsequently the thimerosal in vaccines. After attending Congressman Burton’s hearings (quite pregnant I might add) I too became alarmed. Fortunately, as the Executive Director of Every Child By Two I had at my disposal the scientific research and advice of the world’s leading experts on vaccines and I was able to confidently vaccinate my son without fear of side effects. As of today, eleven studies now show that the MMR vaccine doesn’t cause autism, six have shown that thimerosal doesn’t cause autism, and three have shown thimerosal doesn’t cause neurological problems.

I urge you to read a few of the reviews of Dr. Offit’s book which are listed below and contact us if you wish to have a copy sent to you.

I also ask that you please visit our new website www.vaccinateyourbaby.org – this site was unveiled in August with our new spokeswoman Actress Amanda Peet specifically for parents who have questions about vaccine safety.

at the risk of making this an extremely long blog post, let me do what the Age of Autism did not do: list some of the reviews of the book.

A definitive analysis of a dangerous and unnecessary controversy that has put the lives of children at risk. Paul A. Offit shows how bad science can take hold of the public consciousness and lead to personal decisions that endanger the health of small children. Every parent who has doubts about the wisdom of vaccinating their kids should read this book. — Peter C. Doherty, Ph.D., St. Jude’s Children’s Research Hospital and Nobel Laureate in Medicine for fundamental contributions in Immunology

As a parent it is my job to protect my children. Hearing all the rumors about vaccine side effects made me question the right thing to do. This book makes it clear that vaccines save lives, and that they clearly do not cause autism. — Amy Pisani, mother

In his latest book Paul A. Offit unfolds the story of autism, infectious diseases, and immunization that has captivated our attention for the last decade. His lively account explores the intersection of science, special interests, and personal courage. It is provocative reading for anyone whose life has been touched by the challenge of autism spectrum disorders. — Susan K. Klein, MD, Ph.D., Case Western Reserve Hospital, and Rainbow Babies and Children’s Hospital, Case Medical Center

No one has been more vocal-or courageous-than Paul A. Offit in exposing the false and dangerous claims of the growing antivaccine movement. Offit’s latest book lays waste to the supposed link between autism and vaccination while showing how easily Americans have been bamboozled into compromising the health of their own children. Autism’s False Prophets is a must read for parents seeking to fully understand the risks and rewards of vaccination in our modern world. — David Oshinsky, winner of the Pulitzer Prize in History for Polio: An American Story

All good reviews. But, dang, a Nobel Laureate in Medicine. Not just medicine but immunology? Plus a Pulitzer prize winner? Begs the question of why the Age of Autism didn’t include them.

I am so glad that they offered Dr. Offit’s book to the legislators. I hope that the legislators, or their healthcare legislative assistants take them up on the offer. It’s a well written book, and fairly concise. It really explains how we (the autism communities) got here (into a big mess where vaccines are such a high profile subject–at least in the media) even though we shouldn’t be (because the science has been done repeatedly and shown no link).

Word back on the briefing is that about 75 people attended–a mix of staffers, parents, possibly even a member of the press. One representative was noted. Mr. Kirby gave the short version of his talk (the full version is quite long–take a look at his power point presentations sometime!). But, we can all rest assured that Mr. Kirby is there to save the vaccine program (I do hope that autism-one puts this briefing on their website. I need to hear that claim by Mr. Kirby with my own ears). Mr Blaxill took on the “sickest generation ever” theme, common to the vaccine rejectionists (a claim that has been addressed ably by epiwonk).

But, again, I digress. Let me bring you back to what I see as the one message I think you should take home from this post (repeated from above):

Why reproduce it [Ms. Pisani’s letter] here? Because many in the greater autism community agree with Ms. Pisani. This blogger certainly does. I hope that legislators know that many members of the autism community side with Every Child by Two on this subject.

Politics of Mitochondrial-PDD

15 Aug

For most people reading this blog, the story of Hannah Poling is very familiar. She was diagnosed with a condition called “Mitochondrial-PDD” by Richard Kelley of the Kennedy Kreiger Institute (*according to the document David Kirby blogged)

That, of course, is not what makes her well known. A year ago, I doubt many if any readers here would have heard of Mitochondrial-PDD. What makes her well known is that her case before the Federal Court of Claims (the “vaccine court”) was conceded by the U.S. Department of Health and Human Services (HHS).

What did they say? According to David Kirby’s post:

In sum, DVIC has concluded that the facts of this case meet the statutory criteria for demonstrating that the vaccinations [Hannah Poling] received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder, which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of autism spectrum disorder. Therefore, respondent recommends that compensation be awarded to petitioners in accordance with 42 U.S.C. § 300aa-11(c)(1)(C)(ii).

The HHS conceded that vaccines caused an injury. In specific, the injury was an “aggravation of an underlying mitochondrial disorder”

It’s worth asking a series of questions at this point, I think

Q) Do all mitochondrial disorders result in autistic features or autism?
A) No.

Q) Do all the children in the 30-child study have vaccine injury?
A) No. It appears that Hannah Poling is unique in that group.

Q) Is mitochondrial medicine a highly specialized field?
A) Absolutely.

Q) Are autism doctors/researchers experienced with mitochondrial disorders?
A) Only a few, and not likely to the depth that the mitochondrial doctors/researchers are

Q) Is anyone going to look at the potential role of vaccines with mitochondrial disorders?
A) Yes.

And that is a key point that deserves some extra attention. Dr. Poling in his letter to the NEJM noted that

Also commendable is the new 5-year research plan of the National Vaccine Advisory Committee, which will entail the study of minority subpopulations, including patients with mitochondrial disorders.

In doing so, he cites the Centers for Disease Control and Prevention’s Immunization Safety Office Scientific Agenda: Draft Recommendations.

Which states:

CISA has formed a working group to identify key research questions and consider study methods related to mitochondrial disorders and immunization, in collaboration with partners.

CISA being the “Clinical Immunization Safety Assessment (CISA) Network”

The document further states as the first lines of the first two bullet points under this proposed study:

Mitochondrial disorders are a heterogeneous group of disorders characterized by impaired energy production.

and

Children with mitochondrial disorders commonly present with a range central nervous system findings.

*Again, note that autism/autistic-features are not the only outcome of mitochondrial disorders.

*I think this proposed study is a good idea. The government has conceded a case, mitochondrial doctors state that the question is open as to whether vaccines could be a stressor that causes a metabolic crisis.

People are pushing for this to be a part of the IACC’s Strategic Plan.

Why?

A group of people, experts in vaccine safety studies, are already going to look at the whole question of the potential role vaccines and mitochondrial disorders. Why carve out the even smaller subset with autism? Or, to put it more directly, why call for a second study, and, at the same time, leave out people who don’t have autism?

The answer is simple: politics. People want the idea of vaccine induced autism in the Strategic Plan. To do so, they are willing to ignore the fact that the study is already being planned and, worse, they are willing to sacrifice a large segment of the potential target population.

It’s just not right. Let the correct groups do the correct study. It’s in the planning stage. If people really care about the question of vaccines potentially causing crises in people with metabolic disorders, support the CISA study.

Why do I have a feeling this isn’t going to happen?

* added on edit.

Mitochondrial Disease in the news again

13 Aug

Before I start I want to thank Prometheus who explained this in as plain language as he could. If I’ve made any errors then they’re mine, not Prom’s.

OK, so, as Kristina has already blogged, Mitochondrial Disease has raised its head into the autism world again. A new study has reported that prior to previous thoughts of a prevalence of 1 in 5000, it may actually be as high as 1 in 200.

Of course, that has also prompted a HuffPo post from David who wants to bring our attention to the fact that there are no studies that say that vaccines don’t cause mitochondrial disorder and hence (with the right sort point mutation) autism. David states that prevalence estimates range between 7 and 20% for mito causing autism. That’s not actually correct. In terms of published science its between 4 and 7%. There are suspicions amongst some researchers that it may go as high as 20% but nothing is published yet.

But back to this new study. David _seems_ to be implying that 1 in 200 people with mito disorders means that between 7 and 20% of 0.5% (1 in 200) of people have mito induced autism (0.001% if we go with David’s unpublished 20%).

But that is not the case. This study is not claiming that 1 in 200 people have a mitochondrial induced _illness_ . It is saying that:

In conclusion, at least one in 200 healthy humans harbors a pathogenic mtDNA mutation that potentially causes disease in the offspring of female carriers.

Key phrase – ‘in the offspring’.

According to the UMDF (United Mitochondrial Disease Foundation) there is only a 1 in 4 chance that even two parents who share the same gene mutation (autism in our case) will produce a child affected with the disorder.

So are the study authors claiming that 1 in 200 could have a mito disease? No, they’ve shown that one in 200 people has _a_ mutation in a mitochondrial gene that (_if_ it were homozygous – could lead to a disease).

So, to establish prevalence for a single gene (which theoretically induces autism in our example) we are looking at:

0.005 * 0.005 * 0.25 = 0.00000625 (1 in 160,000)

(0.005 is 1 in 200. 0.25 is 1 in 4).

Thats quite a lot different than 1 in 200.

Reading the study, you’ll find that what the authors found was that 15 of 3168 (0.47%, 1 in 211) newborns they studied had one of ten types of mutation seen in mitochondrial diseases. Of these 15, the authors were able to find 8 maternal blood samples to determine if these were new (de novo) or inherited mutations. Of the eight, three of the mutations (37.5%) were not seen in the mother’s mitochondrial DNA, suggesting that they were new mutations.

Taken altogether, this suggests that – had maternal blood samples been available for all fifteen children with mitochondrial DNA mutations, that 5.6 of them (0.17%; 1 in 568) would have been new mutations.

Note that none of the newborns – even those with mutations in their mitochondrial DNA – and *none of the five mothers who were found to have mitochondrial mutations were reported to have mitochondrial disease*. What the authors mention as their concern is that couples considering having children be made aware of the risks of mitochondrial disease and that testing for the more common mutations leading to mitochondrial disease be available.

Bottom line: having the mutation does not equal having the disease.

This is an unbelievably complicated area. We’re talking as lay people about an area even the experts talk about as barely mapped out. I am not suggesting David intended to mislead people with the 1 in 200 figure I merely want to highlight the fact that it is not as cut and dried as that.

If you liked this post, thank Prometheus. I could not have written it without his generous help.

Jon Poling and Bernadine Healy

7 Aug

As Kev has noted, Dr. Jon Poling has a Letter in the most recent issue of the New England Journal of Medicine.

As I read Kev’s piece I knew I wanted to make a comment. But as I saw that comment would be really long I saw that it would end up looking more like a mini-blog post. Since I have the keys to the car, as it were, I figured I’d go straight to the blog post.

Dr. Poling makes mention of Dr. Bernadine Healy’s interview at CBS. He states that he agrees with her statement:

“I don’t think you should ever turn your back on any scientific hypothesis because you’re afraid of what it might show. . . . If you know that susceptible group, you can save those children. If you turn your back on the notion there is a susceptible group . . . what can I say?”

All those dotted lines just begged for someone to look at the parts cut out.  The parts in red below are what Dr. Poling used for his quote. [edit: sorry, the red shows up in the editor, but not the post]

Healy said: “There is a completely expressed concern that they don’t want to pursue a hypothesis because that hypothesis could be damaging to the public health community at large by scaring people. “First of all,” Healy said, “I think the public’s smarter than that. The public values vaccines. But more importantly, I don’t think you should ever turn your back on any scientific hypothesis because you’re afraid of what it might show.”

and

“What we’re seeing in the bulk of the population: vaccines are safe,” said Healy. “But there may be this susceptible group. The fact that there is concern, that you don’t want to know that susceptible group is a real disappointment to me. If you know that susceptible group, you can save those children. If you turn your back on the notion that there is a susceptible group… what can I say?“

Dr. Poling says he agrees with her. A HUGE question in this community involves the parts Dr. Poling left out: that “[t]here is a completely expressed concern that they don’t want to pursue a hypothesis because that hypothesis could be damaging to the public health community at large by scaring people.

Dr. Healy threw the conspiracy theorists a huge bone with that statement. It was a big statement to make and one that is left completely unsupported.

As an aside–this is my biggest complaint about Sharyl Attkisson. Given the nature of the statement and the ramifications of it, she should have asked Dr. Healy for sources or some way to back that statement up. The fact that Ms. Attkisson didn’t and, in fact, helped lead Dr. Healy through her (unsupported) claims gives a lot of credence to the idea that Ms. Attkisson is promoting her own agenda rather than trying to report a story.

But, back to the post at hand: Does Dr. Poling agree with all the statements? Because, he should realize that people will assume he does and blog posts and internet discussions will appear with people generalizing to “Dr. Poling agrees with Bernadine Healy”.

Consider this, Dr. Healy stated that there “…is a completely expressed concern…”. Note the present tense.

Dr. Poling states in his Letter “Also commendable is the new 5-year research plan of the National Vaccine Advisory Committee, which will entail the study of minority subpopulations, including patients with mitochondrial disorders”. He cites this document: “Draft ISO Scientific Agenda for NVAC Vaccine Safety Working Group, April 4, 2008”

Let’s not quibble on the fact that Dr. Poling’s statement implies that the idea of a study is already accepted, when it is a draft. I think we can all agree that the study is very likely going to happen.

Notice the date: April 4, 2008. The Vaccine Safety Working Group recommended looking at people with mitochondrial disorders. (another aside, Dr. Poling makes a big case, joined by Mr. Kirby, that Hannah Poling has a dysfunction, not a disorder. Is the CDC going to look at the wrong subgroup, those with disorders?)

OK, back to the date: April 4, 2008. The date of Dr. Healy’s interview: May 12, 2008.

Dr. Healy’s statement that there (present tense) “…is an expressed concern….”

Not only is the statement completely unsupported….I’m at a loss for the words here. Should I use, “erroneous”, “creates a false impression”, “ignorant of the recent history in the very subject she was discussing”?

So, I, for one, would like to hear Dr. Poling’s opinion on all of Dr. Healy’s statements. I fear that I will not like the result, but at least we’d have all the facts.

(note: I made some edits after posting–just changing a few words to make it read better)

Jon Poling on Paul Offit

7 Aug

Jon Poling writes a letter in the NEJM that says:

Offit’s remarks about Hannah’s case are not evidence-based. He has no access to my daughter’s personal medical records, legal documents, or affidavits. In contrast, physicians from the Department of Health and Human Services (DHHS) who studied this information recommended that the government concede Hannah’s case. The clinical history Offit presents contains significant inaccuracies, and the resulting conclusions are consequently flawed.

This paragraph lies at the very heart of the mystery surrounding Hannah Poling’s diagnosis, concession and the subsequent media-frenzy.

There are two documents regarding Hannah Poling from which all medical information has been forthcoming.

1) Concession Report (This document has been removed due to the possibility of it being illegally obtained). If people really wish to read the document for themselves it can be founf here, at the Huffington post

2) Zimmerman Case Study

These two documents – and only these two documents – have informed *everyone’s* opinion. Aside from these two documents, there is nothing else (aside from Hannah Poling’s medical records). If anyone believes that not to be the case, I challenge them to either link to them or have the Poling’s release them. The Special Masters have made it very very clear that all that needs to happen for *all* records to be released is for the Poling’s solicitor to write and ask.

….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.

Until the Polings elect to do this very simple action, they have to assume that people will write about what is available. They will also have to put up with the fact that people like me find it very, very suspicious that they repeatedly claim what they simply cannot back up and then refuse to release information that could clear these issues up straight away.

The Case Report contains _all_ the information necessary to make a judgement on whether:

a) Hannah Poling was diagnosed with autism (she was)
b) Hannah Poling was injured by vaccines (she was)
c) Hannah Poling’s autism was caused by vaccines (it was not)

How do I claim point c) as true? Easily. One takes the symptoms listed in the Case Study as being those caused by vaccines and compares them to the DSM (IV) criteria for autism.

fever to 38.9°C
inconsolable crying
irritability
lethargy
refused to walk
waking up multiple times in the night
having episodes of opisthotonus
no longer normally climb stairs
Low-grade intermittent fever
generalized erythematous macular rash
spinning
gaze avoidance
disrupted sleep/wake cycle
perseveration
expressive language was lost
chronic yellow watery diarrhea
appetite remained poor for 6 months
body weight did not increase
decline on a standard growth chart
atopic dermatitis
slow hair growth
generalized mild hypotonia
toe walking
normal tendon reflexes.

I have emboldened the items which match the DSM (IV). I’ve italicised the items which are repeated.

Hannah Poling’s Case Study was authored by four people. One was, of course, Jon Poling. The other authors are:

John Shoffner. In an interview in Scientific American, Shoffer agreed that the scientific evidence presented in the case did not make enough of a case to warrant compensation. He went on to 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?”

….

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.

Its worth noting that John Shoffner – unlike Jon Poling – is a mitochondrial specialist.

Andrew Zimmerman: When I attempted to get Zimmerman’s comments about the case, I received the following reply:

Dr. Zimmerman…….is not able to publicly discuss this patient. As a participant in this case, the family provided consent for Dr. Zimmerman to share information with the court, but we do not have parental consent to discuss the patient publicly – as we are bound by HIPAA privacy regulations, as in any healthcare setting in the U.S.

Why? If the Poling’s are so very keen to make an _accurate_ case then surely, giving permission to the doctors involved is the first step? What is it they don’t want Zimmerman to say?

Richard E Frye, as far as I know has not made any public statements on this case.

The report from Dr Offit was not inaccurate. It was accurate to the information we have. If there is more information then I ask the Poling’s once more to _release_ it. They are legally able to and if they really believe in what they claim then they should be doing it right now. Why aren’t they?

Poling Transparancy: correction

6 Jul

In a previous post, I commented (erroneously) that the HHS conceded the Hannah Poling case based on the expert reports and didn’t have the medical records. This was noted to be incorrect in a comment, and I appreciate the accurate information.

I apologize for taking so long to make the acknowledgment of the mistake more obvious (I had noted it in the comments).

The Docket shows that the expert reports were filed in December of 2007, 12/11/2007 and 12/13/2007. This is more than a month after the “Respondent’s Report” on 11/9/2007 (which I assume to be the concession).

In searching for those entries, I found a strange entry in the docket. Item 25, dated 12/14/2007 states

STATUS REPORT re deferring filing expert reports unless needed for attorney’s fees, filed by TERRY POLING. (Shoemaker, Clifford) (Entered: 12/14/2007)

I can see two meanings for this, and both are confusing to me (so are likely incorrect):

1) This is a status report requesting that the expert reports not be filed unless needed for the fee determination. But, they were already added to the docket. Would that mean that they would be pulled from the docket?

2) This is a status report on a previously entered request to defer filing the expert reports. In other words, a request was made previously and this is basically a statement noting that the previous request is no longer valid.

There are probably other explanations. The above are just speculations. Well, the comment that this entry seems strange to this reader isn’t a speculation, but you get the point, I hope.

Experts with an agenda and newcomers with an agenda

28 Jun

Everyone knows that a good meeting needs to have an agenda. Most people also knows that science being forced to fit a pre-conceived agenda is usually useless.

With that in mind, Gardiner Harris of the New York Times delivers an excellent report that discusses a meeting being held today that will…:

<blockquote>….call together some of the world’s leading experts on an obscure disease to discuss the controversial case of a 9-year-old girl from Athens, Ga. [Hannah Poling]…. [and]…a 6-year-old girl from Colorado [who] received FluMist, a flu vaccine, and about a week later “became weak with multiple episodes of falling to ground” and “difficulty walking,”….She was hospitalized and underwent surgery and was finally withdrawn from life support. She died on April 5, according to the report</blockquote>

(inserts mine)

You can expect the usual suspects to come out with horror show after horror show about this poor little girl who died and how The Evil Vaccines ™ are to blame. However, the truth is that – as with all previous convolutions of the autism/vaccine hypotheses, correlation does not equal causation.

<blockquote>”After caring for hundreds of children with mitochondrial disease, I can’t recall a single one that had a complication from vaccination,” said Dr. Darryl De Vivo, a professor of neurology and pediatrics at Columbia University who will present at the meeting on Sunday and is one of the premier experts in the field.</blockquote>

De Vivo also said:

<blockquote>as many as 700,000 people in the United States had flawed mitochondria, and in roughly 30,000 of them the genetic flaws were expansive enough to cause disease</blockquote>

In an email conversation with Sullivan (a regular commenter and author at this blog), Sullivan pointed out how this 700,000 – an opinion offered by an expert in the field – differed wildly from the <a href=”http://www.huffingtonpost.com/david-kirby/the-next-big-autism-bomb_b_93627.html&#8221; rel=”nofollow”>1 in 50</a> estimation offered by David Kirby which would result in 6,000,000 cases. Thats a fairly wild discrepancy.

Harris also quoted a great aunt of Hannah Poling who simply parroted the ‘green our vaccines’ nothingness:

<blockquote>What’s the schedule and number of vaccines?” Ms. Dunkle asked. “What’s the content of those vaccines?</blockquote>

In the case of the little girl who died, she had already received one set of vaccines with no incident. In the case of Hannah Poling, it is far from clear that the vaccines administered resulted in her autism diagnosis.

The bottom line for me is:

<blockquote>Many experts said infections could be so devastating to those with mitochondrial disorders that the risks associated with vaccines were far outweighed by the benefits. Still, none dismissed the notion that a vaccine could cause a decline in such children.</blockquote>

Which is, of course, true. Nobody disputes that people sometimes have adverse reactions to vaccinations. This is true of kids with mitochondrial issues as well as autistic people as well as people with no other issues at all. Its sad to me that people want to castigate vaccines for being imperfect. Nothing in life is absolutely assured and it is quite obviously far better for children to be as healthy as possible with a very small chance that a side effect may occur. This is even more true for kids with mitochondrial issues. Consier this statement:

<blockquote>Most of these kids [with mitochondrial issues] get a common cold, and either during the cold or soon after, the parents notice a drastic deterioration,” said Dr. Bruce H. Cohen, a neurologist at the Cleveland Clinic.</blockquote>

(inserts mine)

Now, if you said to these parents – we have a vaccine for the common cold. The chances of it working are very, very good but not 100%. The chances of it causing an adverse reaction are very, very low but not 0%. The chances of it causing a _fatal_ adverse reaction is even lower but still not 0% (I’ve got a figure of 1.3%<sup>1</sup>). The chances of your child becoming seriously ill following the common cold is very high. Do you want your child to have this vaccine?

I would imagine most of these parents would break your arm in the rush of trying to sign the acceptance papers.

Now, lets lengthen that scenario. The common cold vaccine is announced to the rest of the world and adopted into vaccine schedules. The usual suspects say how silly it is and how the common cold is ‘nothing’. They refuse to vaccine against the common cold. Herd immunity drops. A child catches a cold and sits next to a child with a mitochondrial issue at a GP’s surgery (for example). The vaccine the mito child has received doesn’t work – because we all know vaccines don’t work 100% of the time.

What will this ‘nothing’ common cold do to this mito child?

Society has an obligation to protect the weaker members of its society.

On that same theme, I noticed a new paper in my Inbox today. It discussed death rates of autistic people compared to the general population:

<strong> Mortality and causes of death in autism spectrum disorders: An update.</strong>

<blockquote> This study compared mortality among Danish citizens with autism spectrum disorders (ASDs) with that of the general population……In all, 26 persons with ASD had died, whereas the expected number of deaths was 13.5. Thus the mortality risk among those with ASD was nearly twice that of the general population</blockquote>

Nearly half of the 26 deaths of autistic people were due to Epilepsy rather than autism itself.

I would like to ask the kind permission of those who continue to try and make a story from nothing about autism and vaccines that we be allowed to move the debate onto areas that really, really need a big light shining on them. The heavy death rate of autistic people from comorbidities such as Epilepsy would be a great place to start.

[1] I got this using the <a href=”http://www.medalerts.org/vaersdb/index.html”>VAERS DB</a> (yes, I know the limitations but I wanted to use a DB given credence by the autism/vaccine believers). Out of a total amount of entries of 227,795 there were 3009 reported deaths.

Mitochondria and autism:time to recalibrate

6 Jun

We all have heard a lot about mitochondria and autism in the past few months.    This message has been dominated for the most part by David Kirby.  Someone got some of the confidential court documents to him, and he leaked one to the public, and discussed another in a news story. 

So, it seems like we are stuck with the idea that “there are a lot more Hannah Polings out there” and “20% of autistics might have mitochondrial disorders” and “1 in 50” (or some such number) “are at risk.” Since the Polings aren’t releasing their information, the government isn’t releasing it’s information, the reasearchers can’t talk and haven’t submitted their paper yet,  we are sort of stuck.  There just isn’t any other specific information out there on people with mitochondria issues and autism.

Is this really the case?

As it turns out, no, this is not the case.  There are a number of descriptions of people with mitochondrial disorders and autism.   And, guess what, they present a different story than we have been fed so far.

We all know about the case study on Hannah Poling.    But, in terms of how many kids (and, presumably, adults) have mitochondrial disorders come from Dr. Oliveira’s group in Portugal.  People tend to use the estimate for autism+mitochondrial disorders from his work (about 4%), but they don’t look closely enough to see that he actually describes a few details on 11 individuals.  In addition,  Dr. DiMauro’s group discussed five individuals in their paper. Gargus of UCI discussed three brothers as well.  Most recently,  Tsao and Mendell discussed two individuals in this paper.

Total it up, and we have information on 22 individuals to consider when we ask the question, “what does autism look like in mitochondrial energy challenged individuals”?

Another way to put it, does mitochondria+autism=Hannah Poling?  Did they all undergo regression ?  Of those that regress, did they all appear normal before regression?   I want to know, because this is what we are being told: autism with mitochondrial disorders/dysfunction result in kids who look normal and then regress.

We get this from David Kirby, who makes statements like:

“That would mean some 190,000 Americans with mito issues who, after normal births and development, suddenly stopped talking and regressed into autism following some kind of childhood fever.”

He seems to be getting this from statements in Hannah Poling’s Rule 4c reports and discussions with the researcher who made them.  Statements (from the Rule 4c report) that describe Hannah Poling as having:

“an etiologically unexplained metabolic disorder that appear[ed] to be a common cause of developmental regression.” He continued to note that children with biochemical profiles similar to [Hannah Poling] develop normally until sometime between the first and second year of life when their metabolic pattern becomes apparent, at which time they developmentally regress.”

David Kirby also uses comments from the researcher stating that he is working on a study of 30 kids similar to Hannah Poling who all underwent regression.  In that as yet submitted study, only Hannah Poling is considered a definite case of vaccine injury.  There is another child whose regression did occur within 7 days of a vaccination.  Somehow, this “possible” case of vaccine injury morphs into a “definite” in the later sections of David Kirby’s blog piece.   I also find it odd that David Kirby claims that people are already preparing to challenge the idea that only 2 of the 30 are possibles.  This, even before the paper is submitted!

Given all the qeustions that are raised, I’d like to know more about what kids with mitochondrial disorders and autism look like.  Don’t you?

The Kids

Let’s first take a look at the DiMauro group paper.  DiMauro’s group discusses 5 kids.  Of those patient 5 had a fever at 14months and showed regression. “At 14 months of age, she had a viral illness with high fever, encephalopathy, regression of previous acquired skills, and significant acidosis. She gradually recovered and continued developing slowly.” Sound like Hannah Poling?  Consider however that she showed developmental delay by 6 months (along with a number of other problems). She did not appear “normal” as Hannah Poling is described before her regression.  Another big difference: Patient 5 had clear mitochondrial disorder.  She has 70% mtDNA depletion in a biopsy sample.  While she is described as “gradually recovered”, she never spoke and is significantly challenged in many areas.

And that is the closest example we get to Hannah Poling in these studies

Patient 3 in the DiMauro study is described as having “…neurologic deterioration during intercurrent illnesses and recovered gradually over several weeks.”  However, he doesn’t fit the “Hannah Poling” mold as he had clear impariments since early infancy.  

The other three patients in the DiMauro study did not have any mention of regression.   There is an Aspie, a PDD kid and a kid with excellent visual/spacial skills but delayed speech and language.

OK, so the DiMauro study doesn’t have “Hannah Polings”.  What about Oliveira?  He describes 11 kids with possible, probable or definite mitochondrial resperatory chain (MRC) disorder.   Of these 11, only 1 is noted as having an “autistic regression”.  (No, it is not noted if this was coincident with vaccination).

One interesting fact in the Oliveira paper: they were studying older kids.  All the kids (with mitochondrial disorder or not) were in the 11-14 year old ages.  Why do I find this interesting?  Because I read a lot of people postulate on the web that Hannah Poling no longer shows “biomarkers” for mitochondrial dysfunction and, thus, thet disappear with age.   People are trying to say, essentially, “A lot of older kids were probably ‘Hannah Polings’ but their tests won’t show mito dysfunction because they are too old” as in, “they were vaccine injured even though we have no proof.”   Since these same people tend to rely on Oliveira’s data to estimate the prevalence of mitochondrial disorders in autism, it seems a bit of a stretch.

In our search for more “Hannah Polings”, we seem to be striking out.  But, there are still two more papers to consider.

Tsao and Mandell describe two patients.  Both were globally delayed from “the early months of life”.  Neither child developed expressive or receptive language, and one never sat up or walked.  Again, these were not “apparantly normal” kids who went through regressions.

Gargus and Imtiaz describe three children, all siblings, who have “a weak mitochondrial defect and a recognized 15q inverted duplication” (we’ll discuss some genetics in another post). The older had poor eye contact and echolalia from early infancy. He developed stimming behavior at age 3 and, sadly, died after a one-day illness at age 5.

OK, sidetrack here.  The authors describe this as  “At age 5, after a 1-day illness, he died suddenly with respiratory arrest and shock, characteristic lethal presentation of a carnitine-deficient fatty acid oxidation”.  In other words, illness can be fatal to the energy challenged.  This is precisely why doctors recommend vaccinating people with mitochondrial disorders, or at least, their close family members.

Back to the paper, the younger twin bothers (monozygotic, monochorionic) hit their developmental milestones in their first year. However, they showed language delay and limited eye contact. One had a near-SIDS event at 4 months, and was the more “severely affected” of the two.

So, the kids in the Gargus study aren’t “Hannah Polings” either as they didn’t regress and showed signs of being “not normal” from early in life.  Now, I suspect people will latch on to the “near SIDS event” at 4 months and suggest that is connected to 4 month vaccines.  No mention of vaccination is made in the paper.

Discussion

There is a huge variation in the presentations of the individuals in the above studies, leaving one to ask, “what can we take away from all of this?”.   One answer is that the huge variation is precisely one of the take-away points: if you think that autism is a spectrum disorder, you shouldn’t be surprised that the mitochondrial energy challenged present as broad or broader of a spectrum.

Second, everyone keeps looking to mitochondria+autism=”must be regressive”.  It just isn’t so.  The “30 child paper” will apparantly concentrate on regressive kids, but the other papers already published do not.

The majority of the individuals described in the DiMauro, Oliveira, Gargus, and Tsao papers show no regression. Of those who do regress, they were not “developing normally” before the regression.

The Bottom Line

The bottom line: Hannah Poling does not appear to be a good representative of the kids with mitochondria issues and autism.   The individuals discussed in papers other than the Hannah Poling case study are very different from her.  Even the other kids in the paper that will concentrate on regressive autism are mostly not like her in one major aspect: they didn’t suffer vaccine injury.

Does that mean that we can’t and shouldn’t learn from Hannah Poling?  Absolutely not.  But, we need to have experts look at and understand all the kids with mitochondrial disorders and autism.  We need this to be a scientific investigation to arrive at real answers, not a series of public relations events to shape the public view.

Poling vs HHS – Something is definitely beginning to smell

30 Apr

Back in March I wrote a post highlighting my suspicion that we weren’t getting the whole story regarding the Poling’s. They had – at that time – failed to give permission to Dr Andrew Zimmerman to discuss the case, despite the fact that he was deply involved in the treatment abd diagnosis of Hannah Poling. He has still – to the best of my knowledge – not been given permission by the Poling’s to speak.

I also blogged Jon Poling’s own words on the subject of document release:

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.

and pointed out the strange incompatability with what the _court_ said:

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.

where it is made crystal clear that the Poling’s had not in fact provided written consent to release their documents.

Further documentation from the courts has now been released which touches on this issue in more detail.

I want to thank M who can choose to name themselves further if they feel like it for helping explain these and for highlighting them in the first place.

The basic gist of this document is that *the Poling’s do not want all the information to be released* despite their oft-repeated claim to the contrary. What information do they not want released – and why?

Respondent points out in the filed Sur-Reply to Petitioners’ Motion for Complete Transparency of Proceedings (R’s Sur-Reply) that while petitioners “did undertake initial steps
necessary to permit discussion of their case before the Special Masters presiding in the Omnibus
Autism Proceeding and before representatives of the Petitioners’ Steering Committee[,] *[i]n fact,
it is respondent who first approached and asked for petitioners’ consent to permit the Secretary of
Health and Human Services to disclose medical information regarding this case* in order for the
Secretary to address inaccurate statements that were being made publicly concerning respondent’s position in this case.”

Now _this_ is a bombshell. It was _not_ the Poling’s who first wanted to release documents, it was HHS. They asked for the Poling’s consent to permit HHS to disclose medical information in order to ‘address innaccurate statements that were being made publicly’.

Well, well.

And there’s more. HHS had also heard aboout the press conference the Poling’s intended to hold:

Having received no response from petitioners, respondent contacted petitioners’ counsel to inquire about the proposed consent form and to “inquire whether press reports were true that petitioners were planning press conference for the following day.” Petitioners’ counsel replied to respondent, and represented during a status conference in this case, that the reports of a planned press conference were not true…….and two days later they held a press conference and appeared in
nationally televised and print interviews discussing the case.

So they lied about the press conference too. Petitioners Counsel is, of course, one Clifford Shoemaker.

What is going on here? Granted there are pre-conditions HHS also wanted placed upon the release of information but why won’t the Poling’s let key medical details that would ‘address innaccurate statements that were being made publicly’ be released right now? Why do they claim that they are asking for complete disclosure when it is clear they are not? Why did their counsel blatantly lie about the press conference?

This is very much an example to me of the ‘muddying of the waters’ that John Shoffner talked about recently.

Alexander Krakow – The Next Bombshell

27 Apr

And so, the next twist in the Autism Omnibus is revealed. Writing in Spectrum Publications in a piece rather hopefully entitled ‘The Next Hannah Poling’ David Kirby writes:

….the boy who was selected to replace Hannah Poling as the first-ever thimerosal “test case” in so-called Vaccine Court, has just been found with many of the same unusual metabolic markers as… you guessed it, Hannah Poling.

……..

….the court announced that the replacement thimerosal test case was also being withdrawn, in order to “proceed to an individual hearing on a different theory of causation.”

……..

“We want to pursue an additional theory, not a different theory,” the boy’s father told me. “We are by no means abandoning the thimerosal theory of causation but, in the context of the test case, the thimerosal theory would have eclipsed our other evidence, including evidence of metabolic dysfunction,” such as impaired mitchondria and low cellular energy.

The boy is Alexander Krakow, son of EoH regular, lawyer Bob Krakow. Up until very recently, lawyer Bob could be heard trumpeting the evils of thiomersal to the exclusion of just about everything else (MMR aside of course). Now, however, the Krakow’s have a new hypothesis (DK refers to ‘theory’ through his article but it isn’t a theory) – but note they still give a shout out to thiomersal anyway.

Now, much as DK and the Krakow’s might want to think this is important, it really isn’t. This situation is in no way similar to Hannah Poling’s. In that scenario, HHS said she was vaccine damaged (but again, despite what DK says, there was no concession she had been made autistic by her vaccines – an opinion the medical evidence and mitochondrial experts agree with) and they recommended awarding damages uncontested. In Alexander Krakow’s case, his _parents_ have withdrawn him from the Omnibus. No science has been presented, HHS have not said anything at all about his medical conditions. All we have so far is the Krakow’s opinion that their son has a mitochondrial disorder.

This is especially interesting in the light of the report of the Krakow’s own hand-picked medical expert, DAN doctor Elizabeth Mumper – not only _a_ DAN! doctor but the ‘Medical Director’ of ARI.

This report prepared by Mumper states:

In my best professional judgement…..it is more likely than not that the thimerosal in the childhood vaccines Alexander Krakow received was a substantial contributing factor to his neurodevelopmental problems.

So the ARI medical director blames thiomersal. What did she have to say about mitochondria?

Well, nothing. The word ‘mitochondria’ is not mentioned once in the whole report.

In his article DK talks about Alexander Krakow having the same ‘markers’ as Hannah Poling. He neglects to say what they are however, or how he concludes they are markers. He also neglects to mention how the DAN! medical director singularly failed to detect any of these so called ‘markers’.

Perhaps the biggest mark against Alexander Krakow having ‘mito induced autism from vaccines’ is the fact that his medical report (which stated the thiomersal dunnit) made no mention of a fever or raised temperature. If I recall correctly, it was a key part of the Hannah Poling scenario that the vaccines had given her a fever and it was this which aggravated her underlying mitochondrial disorder and in turn caused her autism. Alexander Krakow’s medical report mentioned no fever at all.

David must also be aware of the fact that the ‘markers’ he refers to are, at best, markers of mitochondrial issues. Lots kids with mito issues have them. They bear no relation to vaccine injury. I was disappointed to see this issue being talked around but I have some hopes that later this year – towards the autumn maybe – this issue will be made abundantly clear.

So, all in all I am deeply puzzled as to how this is ‘the next bombshell’ or even how Alexander Krakow can be considered to have any kind of mitochondrial related autism issue. The HHS definitely did not concede this case and my guess is that they will be more than happy – given Bob Krakow’s own expert medical report into his son – to contest when their case comes up separately.

My further guess is that we will see some more people switch horses sometime fairly soon. I’m also guessing that – like the Krakow’s – it will be done against their lawyers advice.

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