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Jon Poling – no such thing as bad publicity

4 Oct

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

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

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

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

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

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

Quite.

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

Firstly, Jon Poling is his letter says:

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

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

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

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

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

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

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

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

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

….autism, regressive encephalopathy, and mitochondrial dysfunction…

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

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

Good Information being spread on Capital Hill

2 Oct

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

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

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

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

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

Resources Regarding Vaccines and Autism

October 1, 2008

Dear Colleague,

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

Institute of Medicine report on vaccines and autism

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

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

Other resources on vaccines and vaccine safety

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

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

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

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

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

Information regarding mitochondrial disorders and vaccines

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

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

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

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

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

Sincerely,

/s
HENRY A. WAXMAN
Member of Congress

Mitochondrial disease discussion in Indianapolis

29 Sep

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Mitochondrial genetics and biology

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

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

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

An overview of mitochondrial diseases

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

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

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

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

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

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

Diagnosing mitochondrial disease

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

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

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

Known triggers of mitochondrial disease

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

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

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

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

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

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

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

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

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

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

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

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

and,

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

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

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

By targeted they mean a study that

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

On the other hand, the unbiased approach:

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

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

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

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.

Kirby, wrong on the radio

14 Aug

First there was the world tour (well, to London). Then there was the national tour (well, around a day’s drive from NYC, or thereabouts). Now, we had David Kirby, live by phone on the radio!

The talk is broken into two hours. Mr. Kirby starts at about 50 minutes into the first hour. And, he doesn’t waste time. He instantly moves into getting it wrong.

First he says that anyone who thinks that the science is on the side of saying there is no link isn’t keeping up with the science. This is because (un-supported assertion coming up) “new stuff comes up virtually daily” coming in from major universities around the world.

Well, yes, new stuff is coming in daily from major universities around the world. There’s all sorts of stuff coming in on a multitude of areas, so, I guess he’s right. But, there isn’t stuff coming in daily to support the vaccine/autism concept. Take the last 5 years. With stuff coming in virtually daily, there should be over 1,000 “stuffs” (nice that he didn’t say “research” or “papers” or “results”, but “stuff”). Did anyone else listen to the Autism Omnibus? Did you notice over 1,000 stuffs being presented, or did you, like me, hear a few studies that may or may not support the idea?

OK, that isn’t a biggie. He moves on quickly into…come on we all can all guess….that’s right! Mitochondria! And, right off the bat, he gets it wrong.

He brings up that just yesterday from the UMDF (good group from what I can see) about the research from the Newcastle and Virginia Polytechnic Institute that Kev and Kristina noted recently.

Mr. Kirby mentions that the study noted that 1 in 200 have a “DNA mutation that may confer mitochondrial dysfunction” and “..this is exactly what Hannah Poling had when she got 9 vaccines in one day.”

OK. Now the facts. The study indicates a number of specific, measurable mtDNA mutations that might lead to mitochondrial disorders. Only one mtDNA mutation has yet been found with Hannah Poling–and this is not one of those studied in the recent paper. A major piece of David Kirby’s arguments so far has been that the mtDNA mutation that Hannah Poling and her mother have is benign. The dysfunction results, according to David Kirby’s interpretation of his source, is in Hannah Poling’s nuclear DNA.

As an aside, Mr. Kirby’s stance has been that the Hannah Poling type of dysfunction is inherited from the father (an apparent misinterpretation of it’s own). I bring this up to point out even more–David Kirby knows that there are major differences between the recent study and the kids in the upcoming 30-kid study that describes children with conditions similar to Hannah Poling (with the exception of any vaccine trigger, but that gets glossed over by Mr. Kirby too).

It is worth reading this comment yesterday from Prometheus.

One thing he notes is that a number of the people identified in this study had mtDNA mutations linked to Leber Hereditary Optic Neuropathy (LHON). You don’t have to go farther than the name to realize that an “optic neuropathy” isn’t “exactly what Hannah Poling had…”

Do I dare listen to hour two?

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?

Sharyl Attkisson's long history of anti-vaccinationism

1 Aug

As blogged by Mike, Liz, Autism News Beat, Kristina and Orac, CBS reporter Sharyl Attkisson seems to the prime suspect in the matter of how a fax sent to CBS News by Voices for Vaccines turned up on the Age of Autism blog less than 1 day later.

This matters. Reporters are supposed to be independent. They are supposed to give a balanced view. The very act of forwarding this fax to Age of Autism simply confirms that someone at CBS News, mostly likely Ms Attkisson, is deeply affiliated with Age of Autism. This makes her conflicted and she is totally the wrong person to be investigating the autism/vaccine hypothesis.

I went looking to see what else I could find to support my opinion that Ms Attkisson is someone who is not a reporter, but someone presenting her opinion in the name of investigative news. I found plenty.

Take this ‘interview‘ with Rep. Dave Weldon about the Poling case. I put the word interview in single quotes because it really isn’t an interview, its more a series of questions to allow Weldon to trot out a series of inaccuracies supportive of the idea vaccines cause autism. This is the sort of journalist who would ask God ‘tell me God, do you believe in creationism?’ And then give God a five minute run to explain how he does.

She was also the CBS employee (it seems wrong to keep saying she is a reporter) who interviewed Bernadine Healy in which the former Philip Morris shill said we should re-examine the autism/vaccine idea.

Over on the ‘No Mercury’ website, there is a long list of videos of Ms Attkisson (35 in total, dating back to March 2002) of which all seem to be ‘investigations’ into vaccines and other pharma related activities.

This piece which relates some of the most common and mind-numbingly stupid antivax canards around is just about the clearest indication of her loyalties. Anyone who states the following is not impartial and should not be investigating this story:

Non-profits which dispel any vaccine/autism/ADD link have ties to vaccine makers.

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