Archive | Hannah Poling RSS feed for this section

David Kirby vs Accuracy

20 Jul

As I’ve said before, I like David Kirby personally. We exchange friendly emails. We even recently discussed the idea of having a private blog – readable by all but one that allowed only two posters (David and I) and no commenters. This would, I suggested, give us the opportunity to have a civil debate.

Unfortunately, David was too busy, which was a shame. However, the offers always open should he find a bit more time.

He did have time yesterday to blog a piece for the Huffington Post in which he discussed Amanda Peet and said she was ‘against the medical establishment’ for taking the stance she did. He cited a few things to support his point. I’d like to discuss these things but before I do I’d like you Dear Reader to take note: someone who was at the IACC meeting David talks about (he wasn’t there) will hopefully be posting their account of proceedings on LB/RB.

Anyway. Lets proceed. David’s first piece of rhetoric to support the idea Amanda Peet was against the medical establishment was:

A workgroup report of the IACC (the Interagency Autism Coordinating Committee, which includes HHS, CDC, NIH and others) says that some members want “specific objectives on vaccine research” included in the new, multimillion-dollar national autism research program, as mandated by Congress in the Combatting Autism Act.

I’m sure that some members do want this. Lynn Redwood and Mark Baxhill to be precise. As the upcoming IACC account will show, I don’t think any other IACC workgroup members were interested. (Please see this correction of an ignorant Limey’s take on the US system.)

I would also like to correct David on his characterisation of the Combating Autism Act. The Act contains no mention of vaccines. It specifies environmental research but the words ‘vaccine’, ‘vaccination’ ‘immunize’, ‘immunization’, ‘mmr’ or ‘thimerosal’ appear nowhere in the CAA. I hope David will correct his HuffPo piece accordingly.

Notes from the meeting indicate that workgroup members want federal researchers to consider “shortfalls” in epidemiological studies cited as proof against a vaccine-autism association (by Offit, Peet, et al); as well as a specific plan “for researching vaccines as a potential cause of autism.” The workgroup also says that the final research agenda should “state that the issue is open.”

Once again, David’s notes are coming from two people, Lynn Redwood and Mark Blaxill and indeed – they asked for all these things. The account of the meeting I have heard (from someone who was there) differed somewhat. As a flavour of how much the majority of the working group listened to Redwood and Blaxill, I enclose a teaser quote from chairperson Tom Insel:

“Lyn, your community is not the whole community and there are many people with well thought out concerns about ethics of the concept of prevention and if we want to be inclusive we will not do this.”

Back to David:

July 14, 2008 – Rep. Brad Miller (R-NC), Chairman of the House Subcommittee on Investigations and Oversight, (Committe on Science and Technology) writes to HHS Secretary Michael Leavitt to complain that current federal autism research “shows a strong preference to fund genetic-based studies,” even though there is, “growing evidence that suggests a wide range of conditions or environmental exposures may play a role” in autism.

I blogged that episode here. Suffice it to say that a _politician_ is not representative of the medical establishment. I would urge everyone reading this to read that piece as it suggests amongst other things that Generation Rescue and SafeMinds be responsible for a Board that would serve as a liaison between the IACC and parents of autistic people and autistic people themselves!. After reading that I would urge everyone to contact the following people to express your thoughts (politely!) to the decision makers:

HHS Sec Mike Leavitt (mike.leavittAThhs.gov)
NIMH director/IACC director Tom Insel (tinselATmail.nih.gov)
Everyone here: http://science.house.gov/about/members.htm

Once again, back to David:

Dr. Bernadine Healy, former head of the NIH and the American Red Cross and current Health Editor of US News & World Report tells CBS News that, “Officials have been too quick to dismiss the hypothesis as irrational,” and says they “don’t want to pursue a hypothesis because that hypothesis could be damaging to the public health community at large by scaring people.”

I still can’t get over the fact that David is using this person to back up his points! He continues to trumpet the opinion of Bernadine Healy who actually did assert that cigarettes do not cause cancer and worked closely with Philip Morris to do so. She also totally reneged on her stance on fetal tissue research when she found herself in the same camp as President Bush. In AoA language she’s a shill.

David then goes on to cite al three Presidential Candidates – as if a politicians opinion in an election year means anything! I definitely fail to see what any of them have to do with being part of the medical establishment.

Onwards:

March 29, 2008 – Dr. Julie Gerberding, Director of the CDC, speaking about the Hannah Poling case on CNN says: “If a child was immunized, got a fever, had other complications from the vaccines, and was pre-disposed with the mitochondrial disorder, it can certainly set off some damage (including) symptoms that have characteristics of autism.”

Er, so? I’m really not sure how this is a ‘point’ for David (or anyone else who thinks its supportive of the idea vaccines cause autism). If she’d said ‘yes, vaccines caused autism in Hannah Poling’s case’ (which no-one ever has by the way, despite statements to the contrary) than _that_ would be a bombshell. As it was Dr. Gerberding was simply speaking what is obvious.

David again:

The CISA Network (Clinical Immunization Safety Assessment), headed by the CDC, receives a report from top researchers at Johns Hopkins University that 30 typically developing children with mitochondrial dysfunction all regressed into autism between 12 and 24 months of life. At least two of them (6%) showed brain damage within one week of receiving simultaneous multiple vaccinations.

Now, I can’t answer this as much as I’d like to. I have spoken to people involved in the preparation and writing of this report (as has David) and I was given two take home points from our email chat:

1) The science is _not yet complete_ . The paper is not published.
2) The authors feel ‘disappointed’ in the slant David has put on their work and are loth to discuss it with anyone else due to that. I was told that David might be rather surprised when everything comes out later in the year.

David once more:

Medical Personnel at HHS concede an autism case filed by the family of Hannah Poling in the federal Vaccine Injury Compensation Program, before the claim can go to trial as a “test case” of the theory that thimerosal causes autism. Though portrayed by some (ie, Dr. Offit) as a legal decision, it is in fact a medical decision. HHS doctors admit that the “cause” of Hannah’s “autistic encephalopathy” was “vaccine-induced fever and immune stimulation that exceeded metabolic reserves,”

First of all, I beg to differ with David. The concession was a legal one. By definition the phrase “autistic encephalopathy” does not exist in mainstream science so if it was used (a fact which has yet to be determined – I invite David once more to link through to the document where this is stated). A simple test of its non-existence is to search for the phrase on PubMed. I got:

Quoted phrase not found.

So we have a multitude of uncertainties here:

1) Nowhere (except in David’s writings) can we find evidence of HHS apparently saying “autistic encephalopathy” caused Hannah Poling’s autism.

2) The phrase itself (“autistic encephalopathy”) does not appear in the entire PubMed database, thus causing me to doubt its use by the medical establishment.

3) Is the concession legal or medical? If a diagnosis does not exist but is used in a legal document then by definition it must be legal – thats my opinion anyway.

David also mentions a HHS Vaccine Safety Working Group meeting but I know next to nothing about that so can’t comment.

I have to say that based on the above, David seems to be attempting nothing more than an intellectual ‘land grab’ i.e. to attempt to paint those who claim vaccines cause autism as part of the medical establishment and those who stand against them as not. Its a good political idea but I don’t think its going to work. There are just too many holes in this particular boat for it to float for long.

Age of Autism still don't get it

15 Jul

Over on our favourite pompous blog, the authors and readers still seem to have trouble processing their collective importance to autism related science (none at all) as well as how successful politicians are at directing science (not at all).

They flourish a letter from the Chairman of the Subcommittee on Investigations and Oversight of the House Science and Technology Committee (long enough name fellers?) which is itself breathtaking in its dumbness.

In the Combating Autism Act, Congress directed DHHS to conduct research into screening, diagnosis, treatment and medical care for individuals with autism. These areas of research are essential to a balanced approach. In addition to these areas, I strongly encourage the IACC to promote a balanced research portfolio when examining the underlying causes of Autism Spectrum Disorder (ASD). An examination of the FY07 ASD Research Portfolio shows a strong preference to fund genetic-based studies related to autism. There is growing evidence that suggests a wide range of conditions or environmental exposures may play a role in the emergence of ASD.

So, they firstly admit the role of CAA did not ask DHHS to examine the causes of autism but then ask the IACC (a committee appointed as a result of the CAA) to do it anyway. They then tick the IACC off for having a preference for genetic based studies and say there’s growing evidence that a ‘wide range’ of things cause autism. Possibly thats true, but the reference they provide to support that statement belies their beliefs. They reference the recent IMFAR poster presentation of Laura Hewitson. A study that has not even been published. This _is_ a science committee right?

They then go on to repeat a number of anti-vaccinationist talking points (Hannah Poling, biomedical treatment etc etc) and then make their recommendation:

I urge you to consider forming a Secretarial-level Autism Advisory Board (AAB). While the IACC is the primary mechanism for the coordination of research, surveillance, and early detection activities within the Department of Health and Human Services, an AAB could provide additional public feedback and serve as a liaison between parents, individuals with ASD, advocacy groups and the Department of Health and Human Services, and would assist in reestablishing public confidence

and whom might be on such a board I wonder?

Groups such as SafeMinds, Generation Rescue, Autism Speaks, the Simons Institute, the National Autism Alliance, and the Autism Research Institute all have or are currently supporting research. Such groups have experience evaluating research, an in-depth knowledge of the current body of ASD research, and an appreciation of the new questions that may need to be examined in order to move our understanding of ASD forward.

This is a bad joke, surely. What is driving this is the fact that some IACC members are annoyed that the IACC didn’t immediately capitulate to their demands to study vaccines and vaccines only. There was a good reason why they didn’t. Its already been done. No association. Move on.

I have to say the idea of SafeMinds and Generation Rescue being on a board that is to restore public confidence to “parents [and] individuals with ASD” amuses and scares me in equal part. Maybe Mr Miller hasn’t seen founding members of Generation Rescue calling autistic people ‘trailor dwelling coo-coos’ or founder members of SafeMinds referring to blogs authored by autistic people and parents of autistic people as part of a ‘Wackosphere’? I think once he has (and he will, as will Secretary Leavitt and Dr Insel) he might stop and think futher.

Anyway, I digress, back to AoA. They employ a clever bit of deviousness to try and lever vaccines into the CAA:

The CAA listed 13 scientific fields but the only specific research topic mentioned in the legislative history was vaccines and their preservations as a possible cause of autism.

Hey, why would they need to? The Omnibus Autism hearings are doing that right?

But read carefully. It looks on a quick pass like vaccines are mentioned in the CAA. But they aren’t. They are mentioned in the ‘legislative history’. What that means is that there is no mention of vaccines in the CAA (and there isn’t. Read for yourself.)

Another word that would equate with ‘legislative history’ is ‘rubbish’ meaning ‘that which has been thrown away’. AoA – or in this instance Kelli Anne Davis (apparently the DC Political Liaison for Generation Rescue) – will be using the phrase ‘legislative history’ to try and afford some weight to the idea of vaccines being in drafts of the CAA. I really doubt anyone is going to fall for that little sleight of hand Kelli Ann.

And here’s the kicker:

This letter is the result of a year-long, collaborative effort between Generation Rescue, SafeMinds and the Investigation and Oversight Subcommittee.

I’ll bet it is.

Just this week, yet more genetic evidence was uncovered into the aetiology of autism. Y’know, the kind of evidence AoA et al are saying is useless and there’s too much of.

Let this be a marking point. Let us all remember that this is the week that the political process was co-opted in order to achieve a useless goal. The results of that, if successful, will be even less research into what could be vital therapies, educational strategies, residential innovations and means of garnering respect for autistic people.

AAP and Paul Offit under attack (again)

7 Jul

Over on the Age of Autism, a new post has appeared which goes after the AAP (I thought everyone over there was big friends with the AAP these days?), its representative Dr Renee Jenkins and the AAP in general.

They (AoA) appear concerned about the newly formed Immunization Alliance which is an alliance of groups interested in children’s health and threaten that the formation of this group will put the AAP

<blockquote>…..in the middle of the line of fire for parent activism.</blockquote>

We have to question, first and foremost, what this has to do with autism. The answer is of course nothing. But that fast becoming the way with AoA. They posted over 100 posts throughout June and about a third of them were explicitly about autism or touched on autism. There were a lot about the speaking engagements of David Kirby, a lot of posts about the green our vaccines rally, a lot of posts about Gardasil and a lot of anti-AAP etc posts.

You have taken your eyes off the ball guys. You’ve forgotten what this is supposed to be about.

Anyway, the post goes on to say that the AAP announcement is;

<blockquote>Breathtaking in its dismissiveness of parent concerns…</blockquote>

Here’s the article in full:

<blockquote>

Immunization Alliance to develop compelling messages for parents
Anne Hegland
Editor in Chief

With pediatricians facing an increasing number of parents who question the safety of vaccines, representatives from organizations with a shared interest in advancing children’s health met May 30 to compare notes and develop strategies to help recapture public trust in childhood immunizations.

The newly formed Immunization Alliance, representing 15 groups, agreed that together they must work on short-and long-term solutions before falling immunization rates lead to further outbreaks of once-common and sometimes deadly vaccine-preventable childhood diseases.

Fresh in everyone’s mind were the measles outbreaks in nine states earlier this year.

Framing the challenges

Paul Offit, M.D., FAAP, director of the Vaccine Education Center at Children’s Hospital of Philadelphia, identified some of the factors contributing to the increase in vaccine refusal and the need for quick action:

• parents who have never experienced or seen vaccine-preventable diseases;
• media and Internet reports that are unbalanced;
• decreased trust in the government and health care providers;
• an increasing number of states allowing philosophical exemptions; and
• parent-to-parent spread of misinformation.

Dr. Offit pointed out that the majority of vaccine refusals stem from parents’ fears, with only 10% of refusals associated with parents who strongly oppose vaccines.

“We need to work on public messaging around vaccines — the benefit of vaccines — and to have the right messenger delivering those messages,” said AAP President and meeting co-facilitator Renée R. Jenkins, M.D., FAAP.

Underscoring the need for compelling vaccine messages is the No. 1 ranked resolution from the 2008 Annual Leadership Forum, calling for the Academy to lead a coalition that will develop a media campaign on the value of immunizations that can be marketed to parents, added Dr. Jenkins.

The group agreed that communication strategies must appeal to parents who are Internet and media savvy, and go beyond presentation of the science by engaging consumers on an emotional level. There was acknowledgement among attendees that messages from anti-vaccine groups’ helped erode public confidence in immunizations through their use of celebrities to deliver heartrending first-hand accounts.

“The greatest challenge is getting these messages out in a timely fashion. We’ve got August coming up, which is a big month for kids going to the pediatrician for back-to-school visits and for immunizations,” said Dr. Jenkins.

At press time, Alliance members were prioritizing strategies to be shared with communication experts who will help craft messages promoting the value of immunizations.

Messages for pediatricians

Meeting co-facilitator Margaret Fisher, M.D., FAAP, chair of the AAP Section on Infectious Diseases, said the Alliance’s efforts also are an effort to help pediatricians in practice, whose messages have not always been understood by parents.

“We’re all about what’s best for children, and what we’re trying to do is find a way to re-establish our trust with the public. We want to help provide our members with the messages and the method that can regain that trust and make it easier for them on a day-to-day basis.

“The public has lost trust in medicine in general — not in their individual pediatricians,” Dr. Fisher added.

The Immunization Alliance meeting was supported by the Tomorrows Children Endowment of the AAP.

Immunization Alliance

The following groups are represented on the Immunization Alliance:
• American Academy of Family Physicians
• American Academy of Pediatrics
• American College of Obstetricians and Gynecologists
• American Medical Association
• American Public Health Association
• Association of State and Territorial Health Officials
• Easter Seals
• Every Child By Two
• Immunization Action Coalition
• March of Dimes Foundation
• National Foundation for Infectious Diseases
• National Vaccine Program
• Parents of Kids with Infectious Diseases (PKIDS)
• Rotary International
• Voices for Vaccines

</blockquote>

Now maybe its just me but I didn’t see anything there that could be described as ‘breathtaking in its dismissiveness of parent concerns’. In fact, I think the AoA need a little lesson on numbers. You are not the majority, you are not even close. You are however extremely effective at marketing needless fear. But _this_ parents concerns revolve more around the effects of _not_ vaccinating rather than actually vaccinating.

The post goes on to describe how:

<blockquote>The AAP believes the decline in immunization rates is due to “anti-vaccine groups” and “celebrities” as if Jenny and a few websites are the only problem. What they fail to realize is that the message of groups like Generation Rescue would fall flat if there weren’t tens of thousands of parents who agreed with it. 8,000 people don’t march on Washington because of Jenny McCarthy and a few websites, they march on Washington because they know what happened to their child. If parents weren’t hearing our message corroborated in their own communities, there wouldn’t be an impact.</blockquote>

The decline in immunization rates _is_ partly down to ‘anti vaccine groups’ and ‘celebrities’. You pretty much _are_ the only problem. As I said, you are extremely effective at spreading your message. You have the marketing know-how and you have the money to do it. The _way_ parents are hearing your message corroborated is down to your adverts in NYT, down to appearances on Oprah, down to your blogging etc. But what you are doing is winching autism on top of hardcore anti-vaccinationism. People believe you because you have a patina of respectability. They don’t look past the first line appearance and see the multitude of times <a href=”https://leftbrainrightbrain.co.uk/?p=428″>your predictions have been wrong</a>, that your <a href=”https://leftbrainrightbrain.co.uk/?p=820″>hypotheses have failed</a> and the <a href=”https://leftbrainrightbrain.co.uk/?p=602″>threats of violence</a> that you make to those who oppose you.

And lets be honest, even if there were 8,000 people at the ‘green our vaccines’ rally (a figure that is <a href=”https://leftbrainrightbrain.co.uk/?p=856″>very doubtful</a>) then you don’t even come close to representing teh autism community.

According to the latest figures, autism is at a rate of about 1 in 150 (0.6%) of the population. For the US that’s about 1,827,219 autistic people. That’s 3,645,438 parents. As you are believers in autism epidemic (and thus don’t believe autism exists in adults in significant numbers) lets be kind and half that number to take us back down to 1,827,219 parents.

That means that your 8,000 parents totals about 0.4% of the US autism parent community. But lets double the attendees (and oh hell, lets add on 100,000 of people we’ll think of as followers but non-attenders) to make 116,000. That means you now account for 6.4% of autism parent community.

To put it another way, 93.6% of US parents of autistic people either don’t know about you (doubtful in this internet and celeb obsessed age) or simply don’t offer you any credence. And that’s being very, very kind to your numerical position indeed.

AoA go on to claim that:

<blockquote>…there are five major problems with the AAP’s new approach:

1. You can’t defend the assertions

The “fewer antigens” argument has been a Paul Offit special for years. Not only is this argument confusing for parents to understand, it also means nothing. Offit’s claim is based exclusively on the removal of an older Pertussis vaccine (which was causing many problems) decades ago.

What parents see clearly is how many more vaccines they are getting.</blockquote>

This reveals the anti-science beating heart of AoA. A vaccine is just a vehicle for its contents. The antigens argument _is_ the point:

<blockquote>”Of course, most vaccines contain far fewer than 100 antigens (for example, the hepatitis B, diphtheria, and tetanus vaccines each contain 1 antigen), so the estimated number of vaccines to which a child could respond is conservative. But using this estimate, we would predict that if 11 vaccines were given to infants at one time, then about 0.1% of the immune system would be “used up.””</blockquote>

<a href=”http://pediatrics.aappublications.org/cgi/content/full/109/1/124”>Pediatrics</a&gt;

<blockquote>

2. The news is making them look very stupid

With the Hannah Poling case, Dr. Bernadine Healy’s recent comments, the potential for an Omnibus decision going our way, Julie Gerberding retreating, the IOM revisiting the “environment’s” role in autism, and the case reports of children falling into autism after vaccines continuing to roll in</blockquote>

The Hannah Poling case? Please demonstrate where that showed that vaccines cause or contribute to autism. Bernadine Healy was at one time (and maybe still is, I don’t know) <a href=”https://leftbrainrightbrain.co.uk/?p=846″>a tobacco company shill</a>. Gerderding and the IOM are indeed revisiting the ‘environmental’ roles in autism. What’s that got to do with vaccines? And what case reports of children falling into autism are we talking about?

This is what I meant about a patina of respectability. On the surface, it sounds, _great_ – plausible – to the untrained eye. However, a quick peek beneath the surface and it starts to shake apart.

<blockquote>

4. They are not dealing honestly with parent concerns

If you have no safety studies verifying the issue of combination risk of so many vaccines, defending the schedule in its current form will backfire on you. If your best defense is to cite the 600 deaths a year from HIB now being prevented, parents will compare this to the 1 in 150 risk or higher of autism and make their own conclusions. By not acknowledging that the risk-reward of vaccines is potentially wildly out of balance, parents will not listen to you.</blockquote>

Are you seriously suggesting that people will be more worried about autism than _death_ ???

And, as I’ve demonstrated, I don’t think that organisations that speak to less than one percent of autism parents can really claim to have their pulse on what autism parents really care about.

The last one is ‘Offit is a time bomb’. I’m not really sure what the point there is.

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.

Dr John Briffa is wronger than wrong on vaccines and Hannah Poling

30 May

Media nutritionism is a crowded field, but John Briffa has managed to carve out a niche for himself. And Briffa’s take on vaccines stands out, even among media nutritionists. JDC takes a broader look at Briffa’s take on autism, but I’m going to focus on Briffa’s claim that:

the US Government recently looked at such evidence relating to just one girl (Hannah Poling) and concluded that vaccination had contributed significantly to her autism.

As readers of this blog can probably spot, almost every word of that statement is inaccurate: impressive work, indeed. Continue reading →

Tags: , , , , , , , ,

Age of Autism Excels Itself

4 May

It’s my opinion that the blog Age of Autism has not ever once published a post that has contributed anything to the sum of human knowledge in a general sense, nor has it ever published a post that is designed to actually help autistic people live their lives.

However, every once in awhile, it publishes a post that is so monumentally stupid that I literally think the worse of myself for wasting time reading it. And here I am actually blogging about one. Sigh.

Such a post appeared today. It is entitled ‘CDC triggers measles outbreak’. The author of this post, ex-UPI journo Dan Olmsted says:

I’m starting to think we should rename the CDC the Centers for Disease Contagion. You’ve all seen the news that there are suddenly more measles cases in the United States and the CDC is blaming it in part on the increasing reluctance of parents to vaccinate their kids.

But it’s the CDC’s fault, and no other. Getting the “measles shot” means getting the MMR, and the MMR is “the autism shot” in the minds of many, many parents.

So, let me get this straight. It is the CDC’s fault that measles is making a return across the US? I see.

Its not, for example, the fault of the non-vaccinating upper-middle class soccer-mommies and daddies, for example:

Of the 64 people infected by the measles virus, only 1 had documentation of prior vaccination. Among the other 63 case-patients were 14 infants who were too young to be vaccinated. Many of the cases among US children occurred in children whose parents claimed exemption from vaccination due to religious or personal beliefs, or in children too young to be vaccinated.

Hell, no. _That_ couldn’t be the issue, right? Its obviously the CDC’s fault. Damn them for providing the vaccines and a schedule that has led to serious measles epidemics being held at bay in the US and the UK prior to the last 10 years of utter complacency and idiocy.

And why is Dan Olmsted happy to blame the CDC?

Let me tell you one reason why I’m not shy or circumspect about squarely blaming the CDC for this — because Jon Poling, Hannah’s dad, predicted something like this, or much worse, just a few week ago

And as we all know:

Dr, Poling is the real deal, educated at Johns Hopkins, devoted both to his daughter and his patients, tempered by reality. He’s mild-mannered. He’s mainstream. He’s credible.

Riiiiight. This is the same Jon Poling who was recently described by his co-authors as ‘muddying the waters’. The same Jon Poling who’s wife has been a subscriber to the vaccine hypothesis since at least 2001. The same Jon Poling who knowingly uses incorrect epidemiology.

I’m afraid that Jon Poling is right now in the process of extricating himself from the mainstream. And also from any concept of credibility. His refusal to approve access to information that would provide more accuracy to public statements members of his clique have made about the situation is testament to a man who is not governed by any reality other than a desire to push a pre-conceived agenda.

But really, the attempt to point the finger elsewhere by Dan Olmsted is nothing more than a childish ‘It wasn’t me! Its not my fault!’ when both logic and morality show quite clearly that if people decide to eschew something that might not only save their kids lives but the lives and/or well-being of the society in which they live then the finger of responsibility can only point in one direction.

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.

← Older Entries
Newer Entries →