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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studies, published and unpublished, that looked at two theories: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

Vaccines on the Hill III

26 Sep

Somehow I never thought there would be a “Vaccines on the Hill II”, much less III. That said, a question from Lisa (from about.autism.com) got me thinking and, well, I’d rather do this a post than a response.

I admit, this isn’t directly related to her comment, who commented on how David Kirby makes a point of stating he is not “anti-vaccine”.

Instead this is about frustrations with Mr. Kirby. As an example, let’s discuss how Mr. Kirby “quoted” a response that the CDC made to an NEIHS report in his congressional briefing. Yes, “quoted” is in quotes for a good reason.

On his presentation, page six, Mr. Kirby “quotes” (there’s those quotation marks again!) the NIEHS report:

NIH: “We identified several areas of weakness that were judged to reduce the usefulness of the VSD for addressing the potential association between exposure to thimerosal and risk of ASD.”

With the response from Dr. Gerberding at CDC of:

Gerberding General Response: CDC CONCURS

What was the real quote?

The panel identified several serious problems that were judged to reduce the usefulness of an ecologic study design using the VSD to address the potential association between thimerosal and the risk of AD/ASD.

Emphasis mine.

Yep. Mr. Kirby left out the fact that the NIEHS was specifically talking about ecological studies.

Makes a BIG difference in how that phrase is interpreted. This was a major part of two epiwonk blog posts, here and here. Mr. Kirby’s original blog post on this was retracted, so Mr. Kirby is well aware of the importance of the fact that the NIEHS limited the statement to ecological studies.

By the way, the real CDC response?

CDC Response: CDC concurs with this conclusion and does not plan to use VSD for ecological studies.

They did most certainly not concur with the statement that Mr Kirby “quoted”. Instead, they see the limitation for ecological studies. There is strength in using the VSD. They don’t see it as valuable for discussing the thimerosal/autism question, as we’ve discussed before.

Here’s the NEIHS report, and here, the CDC response.

Mr. Kirby’s “quote” of the NIH was incorrect. This isn’t incorrect in the way Dan Olmsted thinks that “has” vs. “have” is an important difference. No, the quote by Mr. Kirby completely changed the very meaning of the statement that NIEHS made and implied the CDC concurred with.

It sounds like Mr Kirby was caught red-handed trying it too, by a staffer who obviously came in very well informed. The bright side is that the legislature got an idea of Mr. Kirby’s tactics. The down side, they may not realize that the entire autism community is not represented by Mr. Kirby and his tactics.

This misinformation effort has already had an effect. Mr. Kirby’s original treatment of the CDC response made people think that the CDC position is that the Verstraten study was flawed. As epiwonk makes very clear, the opposite is true. The NIEHS panel suggested expanding the Verstraten study (which was not ecological) with additional years.

And people wonder why I get frustrated with Mr. Kirby.

Vaccines on the Hill part 2

25 Sep

We recently discussed the Malony briefing where she hosted David Kirby and Mark Blaxill in a discussion of autism and vaccines. As part of that post, I included a letter from Amy Pasani of Every Child By Two.

On a hunch, I checked with another organization, Voices For Vaccines, to see if they had contacted legislators. Lo and behold, they did:

Dear Senator or Representative:

The organizers of a briefing being held later today have listed your office as one from which a staff member will be in attendance. I would like to supply some information which may place the content of the briefing in context.

Today’s event, sponsored by Rep. Carolyn Maloney, will feature Mr. David Kirby and Mr. Mark Blaxill speaking on the claim that vaccines cause autism. This is a notion which is not supported by scientific evidence. It is also one that has been recognized by the mainstream medical community as posing a threat to the health of Americans.

I am attaching an Open Letter to Congress, issued last June, in which 84 national, state, and local organizations emphasized their support for immunization as a cornerstone of United States public health, and made clear their desire for Congress to follow a sound, evidence-based course in evaluating legislation related to vaccines. As you are undoubtedly aware, this year brought a sharp upswing in cases of measles, most of which were associated with importation of the virus by unvaccinated individuals. These outbreaks reflect vaccine reluctance borne of misplaced fears. The agenda for today’s briefing indicates that it will fan, rather than quell, those fears.

While the presenters will no doubt couch their claims in scientific-sounding language and the rhetoric of impending doom, you can rest assured that no new information has emerged to lead credible scientists to raise concerns about vaccine safety. The popular concept of an “autism epidemic” is largely, if not wholly, an artifact of diagnostic shifts and a broadened definition of autism. There has been no government concession that vaccines cause autism, only that they might have hastened the appearance of autistic-like features in one Vaccine Injury Compensation Program claimant. What autistic people need and deserve is funding for legitimate research and programs that will improve their quality of life — not distractions that squander resources and promote panic.

For further information on these topics, I recommend the following sites:

Centers for Disease Control and Prevention – Autism http://www.cdc.gov/ncbddd/autism

Centers for Disease Control and Prevention – Immunization http://www.cdc.gov/vaccines

American Academy of Pediatrics – Autism http://www.aap.org/healthtopics/autism.cfm

American Academy of Pediatrics – Immunization http://www.aap.org/healthtopics/immunizations.cfm

Vaccine Education Center, Children’s Hospital of Philadelphia http://vaccine.chop.edu

Best regards,

Lisa H. Randall, J.D.
Interim Executive Director
Voices For Vaccines
325 Swanton Way
Decatur, GA 30030
http://www.voicesforvaccines.org

If the reaction to Ms. Pisani’s letter is any guide, one sentence in the letter above will be particularly targeted by some vaccine-autism advocacy groups:

What autistic people need and deserve is funding for legitimate research and programs that will improve their quality of life — not distractions that squander resources and promote panic.

Some may complain about that, but not me.

Keeping the theme used for the previous post, I’ll close with this statement:

Why reproduce the Lisa Randall’s letter here? Because many in the greater autism community agree with Ms. Randall. This blogger certainly does. I hope that legislators know that members of the autism community side with Voices for Vaccines on this subject.

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.

Whilst Mother Warrior McCarthy Oprahed…

25 Sep

David Kirby, who recently had a puzzling and somewhat inexplicable spat with Dr Rahul Parikh was carrying the torch for the male contingent of the autism/antivax crusaders along with Mother Fu…sorry..Worrier Dad…sorry…chief of the quackosphere (term not coined by me but too good not to use) Mark Blaxill at a meeting set up by a political person called Maloney in Washington.

It reminded me quite a lot of the meeting David tried to have with MP’s and Lords over here in June. Then, nobody showed except my MP who I asked to attend to protest on my behalf. What would happen this time?

Well, according to David himself 135 people showed up including 2 US Reps in person (these are the people David wanted to speak to. If I’m right, the event organiser, Carolyn Maloney is a Congresswoman in the House of Reps so, if thats true, there was really 1 US rep other than her) 58 Reps sent staffers (staffers are bottom feeders sent by people who can’t – or don’t really want to – make it. Like glorified gophers.) and 30 Senators sent staffers. So that’s 90 politicals (of whom – lets be honest – only 2, possibly 1, actually count).

Other people there included AAP, CDC, FDA etc.

Anyway, AoA posted two images of the event:

Now, is anyone else looking at those pictures and thinking ‘135 people? Really?‘. It reminds me a little of the odd maths that resulted in an attendance of 8 – 10,000 at the green our vaccines rally.

This event is trumpeted at AoA as ‘standing room only’. Really? Because I can count quite a lot of available sitting room in those photos. Maybe a thought for next time would be to not exaggerate your claims and then post photographs that contradict them.

There was also a very interesting comment left on AoA by a guy called David Atkinson who said:

I happen to be in town on business and I just came back from this meeting. It was a pretty small room but yes it was packed. I am guessing about 50-70 were there. From the looks of it, most were staffers and there were a few parents like myself. I know there were at least 2-3 senators and I am not sure how many if any representatives. David presented very well as usual and then Mark added his piece as well. After this, there were questions taken from the staffers. There were a few pointed questions. I felt that they were quite divisive and loaded questions. This was really dissapointing to me. Mark did a great job at defending and taking these questions on. I was quite impressed with his eloquence as I would have probably killed the snotty little staffer that was quesioning Davids slides. Overall it was a useful meeting. However, for me who doesnt participate in this type of thing very often, I dont feel it was hugely impactful. It didnt seem like this meeting will be any type of game changer for our community but I am a rookie at this. Hopefully I am wrong on that. Great job to David and Mark. I am more inspired now to try to be more active and help out……I would like to help more in future.

Looking at the photos, I would agree with Atkinson that there were about 50 – 70 people there. I would also agree that this not much of a game changer.

Anyway, I guess 1 or 2 US reps is better than the zero that turned up in London. To me though its just growing evidence to support my view that the autism/vax ideas have truly jumped the shark. Anti-vaccine related deaths in the UK, hundreds of anti-vaccine related hospitalisations in the US and ever growing studies showing no association get the message across.

David, I am not embarrased but puzzled

23 Sep

I just read David Kirby’s short post dig on Age of Autism at the review Dr. Rahul K. Parikh made yesterday on Salon.com. I am quite puzzled by David’s post I have to say.

In his overly simplistic way, this pediatrician from Northern California, who has repeatedly ignored third-party invitations to debate me in an open forum, praises Dr. Paul Offit for his attacks on groups like DAN! and Generation Rescue, while holding up Autism Speaks as a bastion of rational scientific thinking, one that does not succumb to what this doctor calls the “slanted science” of thimerosal research:

While Offit focuses on those groups (like Defeat Autism Now! and Generation Rescue) that have been very confrontational and that support slanted science, there are many … groups (like Autism Speaks) that have been broader in their search for autism’s causes and cure.

Overly simplistic is not a fair or polite way to describe Dr. Parikh or the review at Salon. The quote David chooses to single out is precise and accurate. DAN! and GR _are_ confrontational. Several of their members have expressed themselves in terms that are aggressive and violent. They _do_ support slanted science. Generation Rescue once published an ad in (I think) the NYT that thanked researchers for their work on mercury. Several of the named researchers immediately sent an (unpublished) letter to the editor to protest that their work was misrepresented. How much more slanted can you get?

And David, if you’re going to take Dr Parikh to task for ignoring invitations to debate you in an open forum, should I take you to task for refusing to participate in a debate with me in an open forum? Because you did.

David then goes on to suggest that Autism Speaks are just as slanted as GR or DAN! by citing the fact that they have sanctioned three studies that concentrate on vaccines.

Dr. Parikh – Please get your rhetorical ducks in a row, or refrain from participating in this discussion altogether. Misinformation is a dangerous thing. If Autism Speaks is not “slanted,” then how do you explain their support for thimerosal-autism research?

If we look back at what Dr Parikh actually _said_ we can see the picture is clear. Dr Parikh said:

….there are many … groups (like Autism Speaks) that have been broader in their search for autism’s causes and cure.

Autism Speaks have funded three out of twelve studies that concentrate on vaccines. I would not describe a 25% hit rate as supporting thiomersal-autism research. I would describe it exactly as Dr Parikh – ‘broader in their search’. In other words, 75% of their research is _not_ about vaccines. That’s pretty broad.

Its a puzzle. I can only think David didn’t understand Dr Parikh’s rhetoric. I’ll close with an echo of David’s challenge to Dr Parikh. If you ever do change your mind about the debate – a debate in the most open arena of all – a weblog – just let me know. There’ll be no money in it at all but you’ll be able to say you did what Dr Parikh didn’t and accepted the challenge.

Dr Parikh responds.

Before the MMR science, the press conference

4 Sep

As I’ve already posted not once but twice, yet one more study has been published showing yet one more time that the MMR doesn’t cause autism.

Prior to the lifting of the embargo on the study itself, there was a press conference featuring some of the study authors (Lipkin and Hornig were both in attendance) and several journalists as well as ‘freelance writer’ David Kirby.

Most of the questions concentrated on what this study showed, however someone there wanted to try and use this new study to (somewhat bizarrely) exonerate the O’Leary lab’s role in the poor science done by Wakefield and in the lab’s role in the Cedillo hearing (where it was trounced for poor science).

The whole press conference is here.

As an example, here is David’s first question.

http://webjay.org/flash/dark_player

Now thats more a set of questions than _a_ question, the initial question regarding Hannah Poling is both inaccurate and pointless. Inaccurate as, regardless of what David claims, no statement has been published by anyone that states Hannah Poling’s autism was caused by a vaccine. Pointless as this science has absolutely no bearing on her case. It has never been claimed she had measles virus in her gut.

David’s second point regarding O’Leary is fascinating. Because one of the labs used in this new paper was O’Leary’s and because the lab performed well, David seems to be claiming that that exonerates the O’Leary lab from past errors. I’m not sure how that can be true. As Stephen Bustin clearly showed during the Cedillo hearing, the errors of the O’Leary lab were twofold. The first was one of methodology. They forgot to do an RT step. Now I don’t know what that means but it was clear that it was a fairly serious (and basic) error. What it caused was the O’Leary lab to falsely identify contaminants as measles RNA. The second error was failing to pick this contamination up. So its not just a case of contamination, its a case of poor procedure.

I’m going to hazard a guess here and suggest that since the time of Bustin’s initial investigation (some years ago now) the O’Leary lab have figured out how to do an RT Step.

David’s second question followed:

http://webjay.org/flash/dark_player

So, we’re back to the very small sub-population argument. I really want to know – if the leading supporter of the vaccine hypotheses is now angling towards this ‘sub-sub’ group, what impact does that have on the autism epidemic idea? I mean, how can you have an autism epidemic generated by a very small sub-sub group?

Anyway, the answer to David’s question from the assembled scientists was ‘uh, who knows? That’s not what our study was about’. Or words to that effect.

David’s third (and fourth) questions followed. Please listen carefully to the answers which I’ve left on. You might also want to note the (somewhat amusing) deep sigh from the guy answering David as David keeps trying to make him say that MMR isn’t totally 100% safe.

http://webjay.org/flash/dark_player

And then by the time of David’s attempted fifth question, the answering team were obviously getting a bit fed up.

http://webjay.org/flash/dark_player

So that (to me) is a pretty fascinating insight into the denial that exists even at the very highest levels of the autism/vaccine hypotheses.

Just as a postscript, David asked them (totally randomly it seemed) if the best study would be one of vaccinated vs unvaccinated kids. Here is the reply. A reply grounded in real science.

http://webjay.org/flash/dark_player

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.

David Kirby, he's making a list, he's checking it twice…

29 Jul

As has become apparent in recent weeks, there seems to be a ‘backdoor’ movement underway from the mercury militia.

It all started when Kelli Ann Davis attempted to rewrite US legislative history by stating in a speech to the IACC Working Group that the Combatting Autism Act contained specific phraseology on vaccination. It of course did not. David Kirby repeated this error in a Huffington Post entry. This was, it seems, little more than an attempt to ‘set the scene’ for a coup d’état. The logic seems to be that, since, during the CAA process, vaccines were touted as causes, even though the CAA decided to reject them as being too specific and settled for ‘environmental’, Kelli Ann and David felt that this was sufficient cause for stating the CAA included vaccine language. This seems to me to be akin to saying that, as society once believed the world was flat, it still is.

Anyway, this statement seems to have cut little ice with the IACC and so, the mercury militia unveiled Plan B – getting Brad Miller House Committee on Science and Technology’s Subcommittee on Investigation and Oversight to write a letter to Secretary Leavitt (HHS) to strongly recommend the formation of an advisory ‘board’ that they (in the guise of SafeMinds and Generation rescue) would police and use to control access from the public to the IACC and vice versa.

Personally, the idea fills me with complete horror. I’ve already discussed why but just to recap, the idea of Generation Rescue and SafeMinds being even slightly even-handed or representative of autism parents is like a bad joke. I provided email addresses and names for people to express their displeasure also (and I hope many of you did. If you didn’t, I urge you to right now. Both US and non-US people).

Anyway, the latest chapter in this battle for the scientific soul of the IACC is now underway as we speak. I have it on good authority that David Kirby is in the process of contacting as many members from an IACC strategic planning workgroup as he can to ascertain which way their opinion swung. He is specifically interested in the question of whether anyone among the 20 or so workgroup members other than Mark Blaxill and Peter Bell recommended the IACC include in the strategic plan a separate initiative on vaccines. If you listened to the webinar, you know firsthand that no vote was taken. In fact, since the workgroup’s expressed purpose is just to provide feedback and it has no authority over the IACC, no votes whatsoever were taken. But David is going ahead and asking people anyway. To what end I wonder? I think there are a few possible reasons.

The email David sent around asked people their position on vaccines in the Strategic Plan and to explain how they got on the workgroup (the answer, which anyone at NIMH could tell him, is that each IACC member was allowed to nominate one person) I would hazard a guess that this number would be very low indeed. However, what he could also be doing is seeing how many people don’t seem to care either way. The IACC is made up of some scientists who are, shall we say, ambivalent about all things except their own institute or federal agency. By not really caring either way, they stand a good chance of letting this thing happen via the backdoor. David will of course (being the excellent author he is) know exactly how to phrase this to make it sound irresistible.

And then of course there is the third and more Machiavellian option. That a ‘hit list’ is being compiled to intimidate the members. We have seen time and time again on the Age of Autism blog how its authors post the names and contact numbers/addresses of those it doesn’t like or who feel have wronged it. Would David be so nasty as to post the names of people who may inform him they intend to voice their opposition? I hope not. I would like to think better of him than that.

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