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Rethinking Autism

25 Jun

There have been many push-backs to Jenny McCarthy and her views on autism. There has been a lot of blogging, including right here on LeftBrainRightBrain. There is a website StopJenny. There is a Jenny McCarthy body count. Now there is a new site, Rethinking Autism. While it doesn’t directly mention Jenny McCarthy, it is pretty clear that she was a prime motivator for that project.

The person who created Rethinking Autism describes herself this way:

I am the mother of an autistic boy. I have had enough of the pseudo-science quackery that certain celebrities are pitching to parents of kids with autism. The media is concentrating on the pseudo-science and there needs to be a forum for more tried and tested information. It is virtually impossible for an individual to deliver a counter-message, but I may have found a way with RethinkingAutism.com.

The main page carries this message:

All too often in the world of autism, celebrity and sex appeal are used to promote pseudo-science that exploits autistic people, their family members and the public. We decided to put those very same factors to work in service of the truth.

What is her method? Videos. Not just videos, but videos that use autism, celebrity and sex appeal. OK, the Rethinking Autism “celebrity” is not as well known as Jenny McCarthy, but you will get the idea with these videos, by Leeann, who:

Leeann is the friend of a family with an autistic child. When asked if she would help, she graciously agreed. She immediately understood the tongue-in-cheek nature of the spots and, as you’ll see, brought her “A” game!

I’m also rather fond of this one…

There are a number of good videos, as well as concise, clear “key concepts”.

I got a good chuckle out of the videos–and I like the message being sent.

Over at Lisa Jo Rudy’s Autism.About.Com blog, there has been some discussion of these videos. Lisa poses this thought:

In my opinion, Commandatore may get a good deal of personal publicity for her arty and provocative style. She’s also likely to get a lot of flack for her anti-feminist, disrespectful approach to autism education. She’s unlikely, however, to make much impact as an educator.

The way I see it, this is as much a satire on the entire “sex sells” advertising culture as the vaccines-cause-autism-gotta-cure culture. As such, I didn’t see it as anti-feminist. However, I am a heterosexual male and a product of the “sex sells” culture, so I may be biased.

There is also discussion in the comments there about whether Jenny McCarthy was in any way an inspiration for the Rethinking Autism website. Commenter Lynne states:

Jenny isn’t posing seductively to tell the story of her son or otherwise leveraging her sexuality to share her experience with autism with other families. It’s a HUGE leap to say that Jenny McCarthy is responsible in any way for these totally dumb videos.

I find it odd that people who can draw such concrete conclusions from such bad data (i.e. vaccines caused an epidemic of autism, or Jenny McCarthy has a cure for autism) can’t see what is a much more simple connection. I’d bet good money that Rethinking Autism wouldn’t exist if it weren’t for Jenny McCarthy. And, what’s with that “…or otherwise leveraging her sexuality…”. Please. Jenny McCarthy has been leveraging her sexuality for about 20 years now. Do you really think that Jenny McCarthy would be on Larry King Live or Oprah without her career selling her sexuality? Come on.

Consider this. Before Jenny McCarthy telling about vaccines causing autism and recovered kids there was Stan Kurtz. Mr. Kurtz is quite good at self promotion too. But, this is Stan Kurtz:

Stan Kurtz

Stan Kurtz

Not a bad looking guy, but no potential male model either. Not a celebrity. No autism national exposure pre-Jenny McCarthy either. Yes, correlation is not causation. But, really, does anyone think he was going to be invited onto, say, The Doctors, without Jenny McCarthy?

Sorry, there is a very clear reason why Jenny McCarthy gets camera time. It isn’t because she is such a good writer (I’m not impressed). It isn’t because her message is new (it isn’t). I welcome Rethinking Autism’s approach to both the Jenny McCarthy message and the “Sex Sells” culture.

It’s new! It’s spam! It’s revitaPOP: The MB12 Lollipop

23 Jun

I just got a nice spam email from Stan Kurtz, inventor. See, he invented this lollipop with methyl B12 in it to cure…well…almost everything.

Actually, I am a bit confused on that point. I often am from claims in alternative medicine. You see, from his website, Mr. Kurtz states

MB12 is a very unique vitamin and deficiency can affect vision, intestinal function, the ability to protect against infections and toxins, nerve functioning, and DNA replication.

Dang, it protects against DNA replication!?! Does that sound, well, problematic to anyone else? (see comments below. I mis-read the above statement.)

On his website, Stan Kurtz himself tells us that:

What I can tell you is that MB12 truly changed my life. I suffered for years with irritable bowel symptoms, chronic viral infecitons and ADHD and after I took this product I felt better. Since then I’ve personally observed hundreds of people’s lives change through the supplementation of MB12.

You see, it doesn’t “treat” anything, but it changes your life if you have certain disorders. Also, mB12 is “involved in” a whole host of disorders. No direct claims that mB12 supplementation “treats” the disorders. Just a great big implication.

But, then there is the disclaimer. Always a disclaimer. Gotta have a disclaimer.

These products are not intended to diagnose, treat, cure or prevent any disease

No use spending a lot of time on the contradictory nature of claims made by people touting supplements. Mr. Kurtz didn’t invent this sort of doublespeak, and he won’t be the last to use it.

Still, I thought this “revitapop” thing was odd, so I checked a few things out. Like, Stan Kurtz’s otehr website which touts the benefits of MB12, but also states:

Stan has chosen not to sell or profit from the use of this vitamin.

I guess it depends on your definition of the word “sell” or “profit”? $35 for 30 lollipops sounds like there could be room in there for profit.

What also caught my eye was this: “* patent pending”. It caught my eye because I thought, “How can someone patent this?”

I can’t find the patent application for the lollipop version of MB12, but I did find the patent application for his MB12 nasal spray. Patent application US29012039A1.

Claim one of the patent describes the vast number of disorders that are “treated” with this nasal spray:

A method of treating a psychological or neurophysiological disorder, comprising nasally administering methylcobalamin, or a pharmaceutically acceptable salt thereof, to a person in need of such treatment in an amount sufficient to treat the disorder in the person, wherein the disorder is selected from the group consisting of:attention deficit hyperactivity disorder (ADHD), anxiety, depression, stress and chronic stress, socialization problems, mood problems, behavior problems, memory problems, dislexia, depth perception problems, color viewing problems, visual and auditory processing problems, light modulation problems, night vision problems, speech problems such as finding words, apraxia, and articulation problems, sleep regulation problems, eye or muscle movement problems, chronic fatigue problems, digestion problems, sensitivity to chemicals, viral infection, inflammatory conditions such as rheumatoid arthritis, sciatica, and fibromyalgia, asthma, irritable bowel, colitis, tinnitus, migraines, nail biting, and autoimmune problems.

Typical of alternative medical treatments–they treat everything. Always a warning sign, if you ask me. It is interesting to me that autism is not specifically mentioned in the patent. There must be a reason for that.

Is this really new, or novel, as they say in the patent business? It seems that that there is already a patent on nasal sprays to administer Vitamin B12, Vitamin B12 nasal spray and method of use. Filed in 2006, and it mentions mB12.

There is a phrase in patent law: obviousness. Taking one invention, say, mB12 nasal spray, adding it to another supposed invention, treating certain disorders claimed to respond to mB12 is, well, obvious. As they say, anyone “skilled in the art” would put those together.

Even if this doesn’t meet the definition of non obvious, I still think this patent has little chance of success. Consider this paragraph from the US Patent office:

In order for an invention to be patentable it must be new as defined in the patent law, which provides that an invention cannot be patented if: “(a) the invention was known or used by others in this country, or patented or described in a printed publication in this or a foreign country, before the invention thereof by the applicant for patent,” or “(b) the invention was patented or described in a printed publication in this or a foreign country or in public use or on sale in this country more than one year prior to the application for patent in the United States . . .”

(emphasis mine)

Mr. Kurtz’ patent application was field March 17, 2008.

mB12 nasal sprays–as touted by Mr. Kurtz himself–have been discussed online since at least 2005. I guess Mr. Kurtz is counting on the patent examiner not checking the AutismOne website for Mr. Kurtz’ own talk on nasal spray mB12 in 2006. But, even without that, Mr. Kurtz’ own website has discussions of the nasal spray from March 16, 2006– that predates his patent application by 1 year. 1 year and 1 day. Ironic, that.

It will be interesting to see the lollipop patent application. I mean, there are vitamin B12 lollipops already, too. I wonder when Mr. Kurtz first publicly discussed his lollipop invention? Did he shoot himself in the foot here too?

A vaccinated vs unvaccinated study

6 Jun

For as long as I can recall, this has been one of the clarion calls of the autism/antivaccine/pro-disease groups – that the only way to know if vaccines cause autism is to do a ‘simple’ study of vaccinated vs unvaccinated populations. Indeed, Generation Rescue carried out an ill-fated phone survey that in reality meant absolutely nothing so badly was it put together and carried out. But even if it _had_ been well designed and carried out the results were not good for pro-disease anti-vaccine autism believers:

Number of boys and girls with Aspergers
Unvaccinated: 1% of total
Partially vaccinated: 2% of total
Fully vaccinated: 1%
Fully and Partially combined: 2%

Conclusion: you are 1% more likely to have Aspergers if you have been partially vaccinated than unvaccinated. If you are fully vaccinated your chance of being Aspergers is no greater than if you were unvaccinated.

Number of boys and girls with PDDNOS
Unvaccinated: 2% of total
Partially vaccinated: 2% of total
Fully vaccinated: 1%
Fully and Partially combined: 1%

Conclusion: you are 1% more likely to have PDDNOS if you are unvaccinated. If you are fully vaccinated your chance of being PDDNOS is 1% less than if you were unvaccinated.

Number of boys and girls with Autism
Unvaccinated: 2% of total
Partially vaccinated: 4% of total
Fully vaccinated: 2%
Fully and Partially combined: 2%

Conclusion: you are 2% more likely to have autism if you have been partially vaccinated. If you are fully vaccinated your chance of being autistic is no greater than if you were unvaccinated.

Number of boys and girls with all ASD’s
Unvaccinated: 4% of total
Partially vaccinated: 6% of total
Fully vaccinated: 3%
Fully and Partially combined: 3%

Conclusion: you are 2% more likely to have an ASD if you have been partially vaccinated. If you are fully vaccinated your chance of being autistic is 1% less than if you were unvaccinated.

Overall conclusion: the best way to avoid being diagnosed with an ASD is to be fully vaccinated according to the CDC schedule.

And in September of last year, you may recall the announcement of yet another study that demonstrated there was no link between MMR and autism. During the press conference that launched that study David Kirby asked the lead author – Ian Lipkin – what his thoughts were about a vaccinated vs unvaccinated study. His answer was:

http://webjay.org/flash/dark_player

Very difficult if not impossible.

Given that, the US NVAC vaccine safety group released a draft of their latest thinking on the issue of vaccine safety which touched on the idea of doing this sort of study. The entire section related to this is quoted in full below:

Feasibility study of Vaccinated/Unvaccinated/Alternatively Vaccinated Children

Members of the public, stakeholders, and the Interagency Autism Coordinating Committee (IACC) have articulated interest in a study of vaccinated vs. unvaccinated children to determine if there are differences in health outcomes between groups with varying exposures to vaccines. The Working Group considered drafting a recommendation for an IOM review of the science, epidemiology and feasibility of studies of unvaccinated, vaccine delayed, and vaccinated children. The Writing Group Draft Document on Gaps in Research Agenda further developed this idea. The Working Group wishes to clarify several points on this topic. *First, the Working Group believes that the strongest study design, a randomized clinical trial that includes a study arm receiving no vaccine or vaccine not given in accord with the current recommended schedule, is not ethical, would not pass IRB review, and cannot be done*. The type of study that is being suggested would be an observational study of populations looking at natural variation in vaccination schedules including some children where vaccination is declined through parental intent. All children in the study should be recommended to receive the standard immunization schedule. The Working Group endorses the Writing Group’s recommendation for an external expert committee, such as the Institute of Medicine, with broad methodological, design, and ethical expertise to consider “strengths and weaknesses, ethical issues and feasibility including timelines and cost of various study designs to examine outcomes in unvaccinated, vaccine delayed and vaccinated children and report back to the NVAC.”

The Working Group does not necessarily agree with all of the language in the Writing Group’s statement, but with its general intent. The process should be open and transparent, engaging individuals from a broad range of sectors. Considerations as outlined by the Writing Group and modified by the Working Group are as follows:

– This review should consider strengths and weaknesses, ethical issues and feasibility including timelines and cost of various study designs and report back to the NVAC

– Consideration should be given to broad biomedical research including laboratory studies, and animal studies.

– Consideration should also be given to study designs comparing children vaccinated by the standard immunization schedule with unvaccinated children (by parental intention), and possibly partially vaccinated children or children vaccinated by alternative immunization schedules

– Outcomes to assess include biomarkers of immunity and metabolic dysfunction, and outcomes including but not limited to neurodevelopmental outcomes, allergies, asthma, immune-mediated diseases, and other developmental disabilities such as epilepsy, intellectual disability and learning disabilities.

– The inclusion of autism as an outcome is desired. This review should also consider what impact the inclusion of Autism Spectrum Disorders (ASD) as an outcome would have on study designs and feasibility, as referenced in the IACC letter to NVAC.

– This review should be conducted expeditiously, in a transparent manner, and involving broad public and stakeholder input.

So, as per a straight ‘vaccinated vs unvaccinated’ study, Ian Lipkin and NVAC Working Group agree that it can’t be done in the most scientifically accurate way and even if it could, it wouldn’t be ethical due to the requirement of excluding children from vaccination.

What they are saying is that a group like the IOM therefore should write up a feasibility study as to how such a study _could_ be done. Without this, its extremely unlikely that a vax vs unvax study will ever fly.

Amusingly, the way that the NVAC Working Group words a possible solution – vaccinated vs unvaccinated via parental choice – sounds pretty much like the Generation Rescue phone survey. And we know how that ended up.

Why Generation Rescue shouldn’t be on the IACC

27 May

I have been very critical of the lobbying efforts of Generation Rescue. I have found their actions to be far from helpful in the struggle to obtain quality research for people with autism. One issue I haven’t covered is the fact that Generation Rescue has been lobbying hard for a seat on the Interagency Autism Coordinating Committee (IACC).

The IACC, as you might guess, coordinates research efforts amongst various government agencies. They do this by creating a “strategic plan” which puts forth initiatives that should be funded. For example, one “short term goal” listed on the Strategic Plan is:

Launch at least two studies to assess and characterize variation in adults living with ASD (e.g., social and daily functioning, demographic, medical and legal status) by 2011. IACC Recommended Budget: $5,000,000 over 3 years.

We need a lot more research like that if we are to serve our existing adult population and prepare for the kids of today to transition into adulthood.

This sort of research, oddly enough, isn’t supported by many of the autism advocacy organizations. Instead, they see the IACC as a pathway to their singular goal: recognition of the supposed link between vaccines and autism.

The fact of the matter is simple–Generation Rescue should not hold a seat on the IACC. The reasons are simple, and are below:

1) Generation Rescue’s position is already represented on the IACC.

I have never heard any complaints from the Generation Rescue team about Lyn Redwood. Lyn Redwood represents, quite vocally mind you, the “autism is caused by vaccines” segment of the community. She pretty much dominates much of the discussion, steering it towards vaccines as much as possible.

Ms. Redwood is ably assisted in steering all discussions towards vaccines in one of the working groups by Mark Blaxill. Again, I have never heard anyone from Generation Rescue say, “Dang, that Mark Blaxill just doesn’t get our point of view!”

So, if the Generation Rescue position is already represented, why give GR an official position?

2) Just because there are multiple organizations, doesn’t mean that the IACC has to include them all.

Besides their position on vaccines, what do Generation Rescue, Safe Minds, TACA and the National Autism Association have in common?

You can’t join them and vote for their leadership.

I just see these as different faces to the same overall autism group. Actually, I see them as mostly vaccine oriented advocacy groups, not autism advocacy groups, but the point is the same: why give each of these groups their own seat on the IACC.

Think for a moment—why should a few people be allowed to create an “organization” and ask for separate representation? If each subgroup wants to have control over their own budgets and give each member big titles, that’s just fine. But, when it comes to representation on a government body, why should every faction of what is, really, one big vaccines-cause-autism group be given a seat at the table?

Yes, this is much like item (1)—all of these groups already have their opinions represented by Lyn Redwood. There is no need or value in giving them more seats on the IACC.

3) This would lead to even more wasted time.

The IACC is a group that has very limited time to work on a research plan. Work being the operative word. Already, a LOT of time is taken up carefully crafting each and every phrase that might give credence to the vaccines-cause-autism story.

Imagine now if even more time were taken up in these discussions. Please, no. There is a great deal of expertise represented by the scientists on the IACC. We as taxpayers and as members of the greater autism community deserve to benefit from their expertise. We don’t need to hear twice as much (or more) vaccine-oriented discussions.

4) Generation Rescue has clearly demonstrated itself to be anti-science.

Generation Rescue’s recent “study” on vaccines and health outcomes around the world was, in a word, dishonest. The fact that they would promote such a manipulation of facts should disqualify them from sitting on a research based committee.

They either don’t understand research, or they are willing to misuse “research” to promote a political agenda. Either way, I don’t see why good researchers in the field should have to share a committee with Generation Rescue. Moreover, I really don’t see how Generation Rescue can lead the way in directing autism research given their demonstrated lack of understanding of the principles of research.

5) They don’t want their voice heard, they want to be able to outvote the scientists.

As noted above, Generation Rescue’s positions are very clearly communicated on the IACC already by Ms. Redwood. What Generation Rescue wants is a large enough voting block to outvote the scientists on the committee.

Read that again—they want to outvote scientists on a committee designed to coordinate research.

Sorry, you don’t vote down science.

And, once again, why should all the different heads of the same beast (TACA/Generation Rescue/SafeMinds/NAA) be treated as separate entities?

6) They are rude.

The culture of Generation Rescue is not one of working as a team with others. You either agree with their position, or people shout “BullShit” loudly at you.

Yes, there is already rude behavior on the IACC. Mark Blaxill, for one, has spent considerable amounts of time calling anyone who disagrees with his untenable position on mercury “Epidemic Denialists”. We don’t need more of that, and Generation Rescue goes well past that level on the impoliteness scale.

Sorry, I just can’t find any advantage to having Generation Rescue represented on the IACC. I can see a LOT of disadvantages, though

Jenny McCarthy Blocked Me on Twitter!

26 May

A fascinating Guest Blog piece here from Dawn Crawford, Communications Manager for the Colorado Children’s Immunization Coalition on their Twitter activities.

How One Small Nonprofit Irked a MTV Star

It’s amazing how one simple action can result in a landside of meaning.

On May 14, I realized that the organization that I work for, the Colorado Children’s Immunization Coalition (CCIC), aka ImmunizeCOKids on Twitter, was blocked by Jenny McCarthy, aka JennyfromMTV on Twitter.

Okay, so that’s a little odd. That is the only user I know that blocks CCIC.

Sure, CCIC has put out some tweets about Jenny. She has made herself a major target for the pro-vaccine movement. What is really odd is that the block was in response to only three tweets with her user name in it. In the name of complete transparency, I’ve included the actual tweets:

ImmunizeCOKids: @shuwu – great work – “Open Letter 2 @Oprah” poetic, smart & dead-on post about deal w/ anti-vax @JennyfromMTV http://ow.ly/6uY7 (May 14, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1796433253 )

ImmunizeCOKids: Poetic, smart and dead-on post about @Oprah signing deal with anti-vax @JennyfromMTV “Open Letter to Oprah” http://ow.ly/6uY7 (May 13, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1776457638 = 13 RTs of this ow.ly shortener)

ImmunizeCOKids: Jenny McCarthy is on The Doctors TV show today – very inflammatory. She is on twitter now too @JennyfromMTV (May 6, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1716401176 )

And in all fairness, here are the tweets that just included her name and not her Twitter ID:

ImmunizeCOKids: Weigh in! Future of BioPharma: Jenny McCarthy vs Autism and its effects on the public http://ow.ly/6ggj (May 11, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1765254086)

ImmunizeCOKids: Why is Oprah Winfrey promoting vaccine skeptic Jenny McCarthy? Slate Magazine http://ow.ly/5rFB – thanks @JeffStierACSH & @bobfinn (May 6, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1718911892)

ImmunizeCOKids: Agreed on the fiction of vaccines = autism part. Thanks Babble! “Jenny McCarthy To Get Her Own Talk Show?” – FameCrawler http://ow.ly/5gZ7 (May 5, 2009 – http://twitter.com/ImmunizeCOKids/statuses/1708699412)

Social media is a very important strategy for CCIC’s mission of increasing vaccination rates to keep Colorado’s kids healthy. CCIC engages in Facebook, Twitter and YouTube to share our message of confidence in the safety of vaccines. Specifically, we use Twitter to encourage and support the majority of parents who are vaccinating their children, confront misinformation about vaccine safety and share articles from a wide array of sources.

Blocking on Twitter? What’s the Point

As someone who lives and breathes social media (I author three Twitter accounts), the blocking function on Twitter has always perplexed me. Why would you ever want to sever a line of communication in this way?

For those unfamiliar with the function, the block feature on Twitter ensures that you and the blocked user do not follow each other or direct message each other. It doesn’t prevent the blocked user from visiting the user’s profile or writing ‘@ replies’ about them. It just ensures that the user is blissfully ignorant of all the comments the blocked user is continuing to add to Twitterspace. This is from Twitter on their blocking function:

Are you sure you want to block ImmunizeCOKids? Here’s what blocking means:

You will no longer show up in the blocked person’s list of friends.

Your updates won’t show up on the blocked person’s profile page.

The blocked person will not be able to add you as a friend.

For us at CCIC, it is the rich dialogue that makes Twitter so powerful. We receive tweets at least once a week from parents telling us that we are liars and that they staunchly believe that vaccines are dangerous or that vaccines cause autism. We want to keep the dialogue open with all parents. We want to know what exactly is frightening parents and what concerns them about vaccines. It is such a great asset to be connected with concerned parents, have a respectful conversation that educates and empowers parents to make an informed decision about the health of their children.

Moreover, a ‘brand’ like Jenny McCarthy blocking CCIC on Twitter has interesting social media branding implications. It encourages us to assume that she isn’t open to any opposing views. It tells us that contrary to what she says in the media, she doesn’t want a dialogue about this issue. She wants a platform.

David and Goliath

So why are we so excited about being blocked by Jenny? It’s that she cared enough to take the time to block CCIC. It’s that she cared enough about what we are saying to end the conversation.

It’s a lot like David and Goliath. Jenny is a super-human symbol of the anti-vaccine movement (Jenny states that she is ‘anti-toxin’ and not against vaccines- aren’t we splitting hairs?). CCIC is a small but vocal organization in Colorado making sure physicians, nurses and public health providers get the vaccines, resources, and continuing education they need to keep kids healthy. Our total budget amounts to about 1,400 copies of Jenny’s latest book (which not a dime of that budget comes from pharmaceutical companies, btw). CCIC is insignificant in Jenny’s world but important enough to heed a reaction.

Can this open a dialogue?

A good vaccine advocate friend pointed out that this might be an opportunity to have the sides of the great vaccine divide sit down and have an open, real conversation. We think this is an opportunity to come together on the one issue that we can agree on which is protecting the health of children.

So in the end, this is an honest, open invitation to Jenny McCarthy to have a conversation. We both want to do what is right for children; we just have different paths to the same goal. Let’s find a common ground of respect and move forward in protecting children.

Until then, we’ll be here in Colorado protecting children from disease just like we do everyday. Jenny, we hope to hear from you soon. You know where to find us on Twitter.

About the Author: As the Communications Manager for CCIC, Dawn Crawford leads all messaging for the Colorado Children’s Immunization Coalition (CCIC). CCIC is a state-wide nonprofit that ensures that physicians, nurses and public health departments get the vaccines they need to keep Colorado’s kids healthy. CCIC is very active on the ‘interwebs’ as an advocacy organization promoting the prevention of vaccine preventable diseases. You can find them on Facebook, Twitter and YouTube.

Jenny McCarthy’s son was never autistic?

20 May

A provocative piece in the National Post suggests that very thing.

It is not even certain that her child ever had autism; neurologists have pointed out that her description of the symptoms, and recovery, are more consistent with a rare disorder, Landau-Kleffner Syndrome. Ms. McCarthy may thus be trumpeting a “cure” for a disease of which she has no parental experience.

More than a little interested I tracked down this Letter to Neurology Today.

In After Vaccine-Autism Case Settlement, MDs Urged to Continue Recommending Vaccines (June 5), Dawn Fallik correctly cites Jenny McCarthy as a celebrity fanning the flames of the vaccine-autism link. McCarthy also makes parents think that autism can be cured with unproven treatments – as she claims is the case with her son – documented in her much publicized book, Louder than Words: A Mother’s Journey in Healing Autism (Dutton 2007).

Unfortunately, what the public does not realize as well as perhaps McCarthy is that her son was most likely misdiagnosed with autism in the first place. His disorder began with seizures and, subsequently, with the seizures treated, he improved. This would be more consistent with Landau-Kleffner syndrome, which often is misdiagnosed as autism.

Daniel B. Rubin, MD, PhD

OK, so next stop Landau-Kleffner syndrome.

It is characterized by the sudden or gradual development of aphasia (the inability to understand or express language) and an abnormal electroencephalogram (EEG). LKS affects the parts of the brain that control comprehension and speech. The disorder usually occurs in children between the ages of 5 and 7 years. Typically, children with LKS develop normally but then lose their language skills. While many of the affected individuals have clinical seizures, some only have electrographic seizures, including electrographic status epilepticus of sleep (ESES).

…..

The syndrome can be difficult to diagnose and may be misdiagnosed as autism, pervasive developmental disorder, hearing impairment, learning disability, auditory/verbal processing disorder, attention deficit disorder, mental retardation, childhood schizophrenia, or emotional/behavioral problems.

And is Rubin right? Did Jenny McCarthy’s son Evan’s illness begin with epilepsy?

“I found Evan seizing in his crib,” she told ABC’s Deborah Roberts. “He was foaming at the mouth and his eyes rolled back.”

McCarthy rushed 2-year-old Evan to the hospital. After a few days of multiple seizures, doctors concluded that Evan had epilepsy, but McCarthy was not convinced. Her maternal instinct told her that something was still wrong.

Angry and skeptical of the medical advice she had been given, McCarthy went to a second neurologist who gave her an earth-shattering new diagnosis: Her son has autism.

So yeah he is. Evan’s first presentation was epilepsy.

Not exactly enough to give anything approaching a definite answer but still, interesting. I wonder who diagnosed Evan.

Jack Coleman talks back to Jim Carrey, Jenny McCarthy

12 May

Foxnews.com carries a story about Hero’s star Jack Coleman discussing autism and vaccines.

…in his belief the “autism/vaccine” link was unwarranted.

“My sister is a pediatrician and she is not beholden to pharmaceutical companies, which, I know, that’s the big conspiracy theory out there. They did huge research in Europe and they have not found any ties to it at all, there is no longer live mercury in any of these calculations,” Coleman told Tarts. “I just think that from what I’ve read and heard I don’t think it’s connected. I do know that there is a MMR that it makes your child extremely cranky and sick but I personally don’t it contributes to autism, but I am not a doctor.”

And despite McCarthy and her longtime lover Jim Carrey’s relentless lobbying to put pressure on the federal government to remove toxins from vaccines and fight for fewer childhood vaccinations prior to the age of 2, Coleman still supports immunization all the way.

“I have given my child every vaccination there is, but when you are related to a pediatrician, you tend to look much more kindly at vaccinations. As she says, ‘I’ve never seen a child die from an immunization but I have seen one die because of a whopping cough.’ What our grandparents would give to have those immunizations,” he added. “If five years from now, science says that it is the cause, then I will eat my words, but I don’t see that happening.”

A rep for McCarthy did not respond for comment.

Seems like there are maybe more smart celebs in Hollywood than I thought, Jennifer Garner, Amanda Peet, Jennifer Lopez and now Jack Coleman.

MMR doesn’t cause autism: Generation Rescue study proves it!

7 May

Generation Rescue is making a big deal out of their “study” on autism and vaccines. This was a very dishonest attempt to promote their view on autism and vaccines, no doubts about that.

While analyzing their study, I realized how much easier it is to think like someone from Generation Rescue. Rather than challenging my own conclusions, why not go the GR way and start with a conclusion and look for data–any data–to support it! This is a LOT less work, and, heck, fun too!

Let’s take a look at the question, Does the MMR vaccine cause autism? Well, GR has conveniently given us enough data to draw a conclusion! Forget the fact that the GR “data” is bunk. Remember, no critical thinking allowed for this analysis–are we not pseudoscientists? We are Gee-Ar!

Let’s look at autism prevalence by country and compare that to whether they use the MMR vaccine or not. That sounds like we should be able to come to some definite conclusions!

Here are the autism prevalence by country and whether they use the MMR shot in their schedule. (European data are here, Israel here, Japan here).

We are going to ignore the data from the United States. Why? Because it doesn’t fit our conclusions, silly. If you are going to think like GR, go all the way, I say!

Country, prevalence, MMR status:

Denmark: 1 in 2,200. MMR at 15 months
Norway: 1 in 2,000. MMR at 15 months
Iceland: 1 in 1,100. MMR at 18 months
Israel: 1 in 1,000. MMR at 12 months.
Sweden: 1 in 862. MMR at 18 months
Finland: 1 in 719. MMR at 14-18 months
France: 1 in 613. MMR at 12 months and second shot at 13-24 months
Japan: 1 in 475. No combined MMR

Wait a minute–who has the highest prevalence? Japan!!!!

Who doesn’t use the combined MMR shot? Japan!!!

Pretty conclusive, I say (as long as I have my Generation Rescue Thinking Cap on!). MMR doesn’t cause autism!

Hey LeftBrain/RightBrain–this is too tempting. It is so much easier than real blogging. As compared to real scientific research, GR research is a snap! I may just have to accept the vaccine hypothesis just to save some time!

[edit to include correction from the comments!]

Generation Rescue: a dishonest autism charity?

6 May

Generation Rescue has a long history of promoting bad science. They even have tried their hand at it themselves before, with a phone survey that was so bad it would have earned a college freshman in epidemiology a failing grade.

So when they came out with their own “study” of vaccination rates around the world, you can imagine I didn’t expect it to be good. In fact, I just avoided it altogether until they sent me an email telling me how good it was.

So I looked.

It was worse than I expected. Far worse.

The “study” is here. Generation Rescue (GR) looks at the vaccine schedules for multiple countries and compares this with the infant mortality rate and autism rates in those countries.

I read it and, Oh…my…god… I expected bad science and poorly/biased interpretations. Instead, what I found was pretty clear evidence that Generation Rescue is knowingly distributing misleading information.

Before you get worried that this post is way long and question whether you really want to read the details, here’s the short version:

1) They compare infant mortality rates between the US and other countries–even though it is clear (according to their own expert no less!) that the US uses different criteria for infant mortality and it isn’t accurate to compare the US infant mortality to that in other countries.

2) They compare autism rates amongst countries to show the US has the highest rate, suggesting that the higher the number of vaccines the higher the autism rate. They just “forget” to tell you that the prevalences for the other countries are from old studies. We can debate why the reported autism prevalence is going up with time, but no one debates that the older studies report lower prevalences than we see now. So, why does Generation Rescue compare prevalence in the US using 2002 data for kids born in 1994 with, say, a Finnish study using 1997 data on kids born as early as 1979? I consider them very biased, but not incompetent enough to miss those fatal mistakes in their study.

3) They claim that the US has the highest vaccination rates and the highest autism rates. They conveniently ignore prevalence from Canada and the UK, which have comparable prevalences to the US and much much lower numbers of vaccines. Yes, you read that right, they left out the well known studies that would show that their conclusions are nonsense.

The worst part is that it is almost certain that Generation Rescue didn’t make an honest mistake. These are so obvious that whoever wrote that “study” had to know he/she was producing what amounts to the lowest form of junk pseudoscience.

For those who want the gory details, here they are:

Infant Mortality Rates

Generation Rescue points out that the reported infant mortality rate is highest in the United States, which also has the most childhood vaccines. All well and good, but can we really compare the infant mortality rates from country to country?

When I type infant mortality rate into a google search, the first hit is a Wikipedia page which, as it turns out, addresses exactly this question.The answer is a resounding “NO”, we can’t compare the US infant mortality rate with that of other countries.

While the United States reports every case of infant mortality, it has been suggested that some other developed countries do not. A 2006 article in U.S. News & World Report claims that “First, it’s shaky ground to compare U.S. infant mortality with reports from other countries. The United States counts all births as live if they show any sign of life, regardless of prematurity or size. This includes what many other countries report as stillbirths. In Austria and Germany, fetal weight must be at least 500 grams (1 pound) to count as a live birth; in other parts of Europe, such as Switzerland, the fetus must be at least 30 centimeters (12 inches) long. In Belgium and France, births at less than 26 weeks of pregnancy are registered as lifeless.

So, who wrote that 2006 article in US News & World Report?

Bernadine Healy.

Yep, the same Bernadine Healy that is Generation Rescue’s favorite “mainstream” doctor.

One has to believe that GR saw that article in Wikipedia and the US News article. They are, after all, Google Ph.D.’s. Given the author was Bernadine Healy, they have to have considered it accurate, don’t you think? And, yet, GR conveniently forgets to mention the differences in how the US and other countries count infant mortality in their vaccines cause autism “study”.

Autism Rates 1: Autism Prevalence by country

Start with the conclusion of the Generation Rescue “study”:

This study appears to lend credibility to the theory that the U.S. vaccine schedule is linked to the U.S. epidemic of autism, particularly when compared to the published autism rates of other countries.

Given this bold claim, it is critical that they use good data for the autism rates. By “good” I mean that they need data that they can accurately compare to the CDC reported prevalence of 1 in 150. That data was taken in 2002 on 8 year old children. I.e. kids born in 1994. Since reported prevalence numbers are going up with time, it would be very misleading if they were to use, say, prevalence numbers from the early 1990’s, wouldn’t it?

Any prevalence that they use would have to use prevalence numbers from about the same time, on kids of about the same age.

Here’s their table comparing the autism rates.

gr_table3

Let’s take a look at the studies they cited for their numbers, shall we?

Iceland: Prevalence of Autism in Iceland. This 2001 study uses kids from birth years 1984-1993. I.e. most (if not all) of the kids are from the time before the big upsurge in autism diagnoses. Hardly a good comparison to the 2002 CDC study, eh?

For Sweden, they use a paper called, “Is autism more common now than 10 years ago?” from The British Journal of Psychiatry. Published in… 1991. That’s pre DSM-IV. Amongst other problems, they won’t be including the other PDD’s in the autism spectrum, like the CDC study does. Besises, the kids from the CDC study weren’t even born yet, it was so old! Is there any wonder that the Swedish study shows a lower prevalence?

For Japan, they use a paper titled Cumulative incidence and prevalence of childhood autism in children in Japan. The study uses data from 1994 on kids who were born in 1988.

Are you starting to see the pattern here? Time after time, GR is comparing US 2002 prevalence data to much older data from other countries. Let’s go on:

For Norway, they use the paper Autism and related disorders: epidemiological findings in a Norwegian study using ICD-10 diagnostic criteria. The paper was published in 1998 on children 3-14 years of age. Simple math suggests they had kids with birth years going back to at least 1984 in that study. Hardly a good comparison to kids born in 1994.

For Finland, they use Autism in Northern Finland. Here is an updated version from 2005. The study uses data from 1996-97, on kids up to 18 years old. I.e. they are using kids that were born as early as 1979. Also, they are using data on patients from hospital records who used “communal health services”. Sounds a lot like “inpatient”–one of the critiques that GR uses against studies from Denmark. Also, the Finland study didn’t include Aspeger syndrome, as that was a new diagnosis at the time. Hardly a good comparison to the CDC study.

For France, they use Autism and associated medical disorders in a French epidemiological survey. This uses “French children born between 1976 and 1985”.

For Israel, they use Autism in the Haifa area–an epidemiological perspective. This paper looks only at autistic disorder (no PDD-NOS, no Aspergers, no Rett’s no Childhood Degerative Disorder). Right off the bat that reduces the prevalence and makes it impossible to compare the the CDC 2002 study. The Israell study also is, you guessed it, based on kids older than the CDC study: children born between 1989 and 1993.

Last, Denmark. If you’ve been following the thimerosal debate, you know this is going to be ironic. They use Madsen’s paper, Thimerosal and the Occurrence of Autism: Negative Ecological Evidence From Danish Population-Based Data. Generation Rescue refers to this study (incorrectly, I might add) as “This one goes beyond useless”. I guess “useless” is only when it is used to refute the thimerosal hypothesis? Come on, GR, this level of hypocrisy is just painful.

Missing Studies

There are some very well known studies that Generation Rescue somehow forgot to include in their “study”. Could this be due to the fact that they are very good counterexamples to the vaccine-hypothesis ? Let’s look at some and see, shall we?

United Kingdom: Pervasive Developmental Disorders in Preschool Children: Confirmation of High Prevalence ( study performed in 2002 with a prevalence of 1 in 170), and Pervasive developmental disorders in preschool children (study performed in 1998/9 with a prevalence of 1 in 160).

Canada: Pervasive Developmental Disorders in Montreal, Quebec, Canada: Prevalence and Links With Immunizations (birth years 1987 to 1998. Prevalence 1 in 154).

Wow, the United Kingdom and Canada have prevalence numbers comparable to those in the US!

So, let’s complete the comparison, shall we? What is the vaccine schedule like for the UK and Canada? Using the Generation Rescue “study” we get 20 vaccines for Canada and 21 for the UK.

Wow, that’s way less than the US (with 36), and they have the same autism prevalence as the US? How could that be? Is it, perhaps, that the autism is NOT related to the number of vaccines in a given country’s schedule?

Anyone doubt why GR left the UK and Canada off their table of Autism Prevalences Around the Globe? No, I am not giving them a pass that this could be an honest mistake.

To quote Generation Rescue’s top funny guy (Jim Carrey), “How stupid do you think we are?”

Jenny Mcarthy on HBOT

6 May

Given the recent death of a woman and serious injury of a child in a hyperbaric chamber. It is perhaps worth highlighting Jenny McCarthy’s recent “tweet”.

Im inside a hyperbaric chamber. This thing makes me feel amazing.

If a vaccine “exploded” killing one person and critically injuring another with such clear causality, one can imagine McCarthy would be the first to stand up and denounce it. Instead, as one commentator says it’s “All risk, no benefit” when it comes to the quackery surrounding autism, and that’s before you risk dreadful gluten-free and casein-free cup cakes. Meanwhile, despite having no evidence, McCarthy suggests vaccines are dangerous toxic products and may be responsible for the start of an explosion of preventable childhood diseases.

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