Andrew Wakefield – as succesful an author as researcher

2 Jun

Andrew Wakefields supporters were hoping his new book would be a bestseller. That ain’t going to happen given how much a publishing insider revealed to me how many he has actually sold:

He sold a total of 1017 copies. Top sales 157 copies in NYC. 46 in LA, 43 in Atlanta (perhaps CDC people wanted to see what he said?!), 38 in Boston, 24 in Chicago, 18 in Seatlle and 17 copies in his hometown of Austin

Ouch. It’ll be interesting to see how well the book does as interest in it fades. Or maybe ‘well’ isn’t the right word.

Another Wakefield paper retracted

1 Jun

Following the retraction by The Lancet of Mr. Wakefield’s “landmark” 1998 paper, many speculated as to if and when other retractions would follow.

The patient pool Mr. Wakefield relied upon for his study was very biased by the referral process. Also, Mr. Wakefield’s team was working without ethical approval for many of the children studied. The natural question to follow is not if The Lancet should retract, but how many papers by Mr. Wakefield’s team were also tainted and should be retracted.

The American Journal of Gastroenterology has retracted a paper from 2000 by Mr. Wakefield’s team: Enterocolitis in Children With Developmental Disorders.

Here is the notice:

Retraction: Enterocolitis in Children With Developmental Disorders

A J Wakefield, A Anthony, S H Murch, M Thomson, S M Montgomery, S Davies, J J O’Leary, M Berelowitz and J A Walker-Smith

Am J Gastroenterol 2000; 95:2285–2295

On 28 January 2010, the UK General Medical Council’s Fitness to Practice Panel raised concerns about a paper published in the Lancet by Dr Wakefield et al. (1). The main issues were that the patient sample collected was likely to be biased and that the statement in the paper, that the study had local ethics committee approval, was false. There was also the possibility of a serious conflict of interest in the interpretation of the data. The Lancet has now retracted this paper (1). This paper in the American Journal of Gastroenterology (AJG) (2) also includes the 12 patients in the original Lancet article and therefore we retract this AJG paper from the public record.

Science based autism charities?

1 Jun

Science Based Medicine is a blog devoted to, well, discussing science based medicine. The subject of autism comes up fairly regularly, usually in the context of the vaccine/autism discussion. A recent SBM piece by Dr. David Gorski, Nine differences between “us and them,” nine straw men burning, caught my eye.

Dr. Gorski comments:

Alison Singer (@alisonsinger), President of the Autism Science Foundation, arguably the only truly science-based autism charity in existence at the moment,

I was about to write a comment when I decided that a blog post was more in order.

The Autism Science Foundation is a science-based autism charity. But, is it really arguable that there are no other truly science-based autism charities?

The answer (as you can likely guess) is “no”. Two names come to mind readily, but I don’t suggest this is an exhaustive list.

[Correction–it has been pointed out to me that both the foundations below do not accept public donations. Thus, they are not “charities”. That would leave the Autism Science Foundation as the one major science based charity]

Who is the largest autism charity? A lot depends on how you define size, but let’s just consider money. Who has the most and who spends the most? If you are thinking Autism Speaks, you are incorrect. The answer is the Simons Foundation.

The Simons Foundation has two main focuses, Math&Science and Autism. They run one of the better blogs on autism science. One of the recent members added to the Interagency Autism Coordinating Committee is from Simons. Most of the autism charities you might know of are working on the basis of taking money in and turning around and spending that money. That is part of the reason why you know about them, they have to keep their name in the public’s eye to get donations. Simons works from an endowment, a foundation. A big one. As of 2008, Simons had assets worth over US$1 billion ($1.108B if you want details). From this endowment, they fund research. After the U.S. Government, they are likely the largest source of autism research funding in the world.

If you check the Simons Foundation website and blog, you will see a decidedly science oriented organization.

The Nancy Laurie Marks Foundation also supports a number of science projects, as well as some advocacy efforts. The Nancy Laurie Marks Foundation was working from an endowment of nearly $US90 million in 2008.

I will highlight two paragraphs from the Marks Foundation “about” page:

The principal goal of the scientific program is to achieve a deeper understanding of the biological basis of autism, focusing on genetics, synaptic chemistry, the neurobiology of communication, systems biology and the physiology of movement. The Foundation funds peer-reviewed research, the development of collaborative investigator projects, and research fellowship programs. Through sponsorship of scientific conferences, symposia and workshops, the Foundation seeks to encourage innovation and provide a springboard to generate new avenues of shared inquiry.

and

The NLM Family Foundation actively seeks partnerships with other grantmakers sharing its goals and fosters collaborations between investigators and organizations that have a direct interest in developmental disabilities. Of particular interest are projects which challenge stereotypes that stand in the way of people with autism realizing their potential, such as the misconception that people with autism are invariably mentally retarded and have minimal interest in social interaction. Challenging such stereotypes will lead to a greater public understanding of autism and widen the scope of scientific inquiry.

The Nancy Laurie Marks Foundation recently donated US$29 million to Massachusetts General Hospital to start a program focusing on the needs of autistic adults.

I am regularly taken to task on this blog for focusing too much attention on issues which are ever increasingly less relevant to the autism communities. I think Dr. Gorski’s comment is not a failure on his part, but, rather, on mine. While I have discussed both the Simons and Marks foundations, it is well worth the time to discuss them again. Any real change privately funded research may bring to the lives of autistics will come from groups such as these.

Autism and mental retardation – genetic overlap

30 May

Post taken from Medical News Today

Researchers working with Professor Gudrun Rappold, Director of the Department of Molecular Human Genetics at Heidelberg University Hospital, have discovered previously unknown mutations in autistic and mentally impaired patients in what is known as the SHANK2 gene, a gene that is partially responsible for linking nerve cells. However, a single gene mutation is not always enough to trigger the illness. In some cases, a certain threshold of mutation must be exceeded. The researchers conclude from their results that a correct inner structure of the nerve cell synapses is necessary to enable the normal development of language, social competence, and cognitive capacity. Essential for the success of the project were the studies by the Heidelberg research team with the doctoral student Simone Berkel and collaboration with a Canadian research team headed by Steve Scherer. The study has already been published online in the leading scientific journal Nature Genetics.

Autism is a congenital perception and information-processing disorder of the brain that is often associated with low intelligence, but also with above-average intelligence. The disease is characterized by limited social communication and stereotypical or ritualized behavior. Men are affected much more frequently than women. Autism and mental retardation can occur together but also independently of one another and are determined to a great extent by hereditary factors. Some of the responsible genes have already been identified but the precise genetic mechanisms have not yet been explained.

Genetic makeup of hundreds of patients analyzed

Professor Rappold and her team focused their studies on the SHANK2 gene, which encodes a structural protein at the nerve cell synapses. It is responsible for the mesh structure of the basic substance in the postsynapse. Only when the postsynapse is properly structured can nerve impulses be correctly transmitted. The researchers analyzed the genetic material of a total of 396 patients with autism and 184 patients with mental retardation. They found different mutations in their SHANK2 genes in the area of individual base pairs, but also variants in the number of gene copies. The mutations led to varying degrees of symptoms. None of the observed gene variants occurred in healthy control persons. “Apparently an intact postsynaptic structure is especially important for the development of cognitive functions, language, and social competence,” explained Professor Rappold.

Identical mutations as the cause of different diseases

Some of the genetic mutations identified were new occurrences of mutations that were not inherited from the parents, but some of the mutations were also found in one parent. Since there are also healthy carriers of gene variants, we must assume that a certain threshold of gene mutations must be exceeded for the disease to appear. “Moreover, the same mutation can be present in an autistic patient with normal intelligence and in a mentally impaired patient,” said Professor Rappold. There is some overlap in the clinical symptoms of mental retardation and autism, which can now be explained by a common genetic cause.

Polls show vaccine refusers are mainstream?

29 May

This is the claim put forth in a recent “vaccine choice” rally. You’ve probably already read about the rally in Kev’s piece The American Rally for Personal Rights – bit of a damp squib. In his piece on the rally, Is the anti-vaccine movement fizzling?, Orac has videos courtesy of Bruce Critelliplus.

The rally started out with (amongst other statement) a statement from the conference organizers pointing to a survey they commissioned:

“We are mainstream America! And there’s no denying it. We have some important and special news to announce that was shared earlier this week in a press conference. Three weeks ago the center for personal rights contracted with Harris Interactive to conduct a national survey, the first of its kind…..

And here are the results:

Today, the majority of American Parents believe that they should have the rights to decide which vaccines their children should receive without regard to mandates

http://vimeo.com/moogaloop.swf?clip_id=12082474&server=vimeo.com&show_title=1&show_byline=1&show_portrait=0&color=&fullscreen=1

Chicago AntiVax Rally May 26 2010-Part 1 from Bruce Critelli on Vimeo.

If you’ve read this blog much before, you probably know I like to look at the numbers. So I checked the poll.

Here’s the first question:

All children should receive 69 doses of 16 vaccines before age 18, as recommended by the federal government.

Wow. All children? The Federal government does not recommend that all children get vaccines, in any number. The federal government acknowledges that some children are unable to be vaccinated due to medical conditions.

So, I would have disagreed with question one. Strongly. Does that mean that I agree with the center for personal choice? Hardly.

How many people did agree with question 1? 42%. Another 39% were neutral. I put it that the majority of people polled (and whoever wrote that question) do not understand the vaccine program.

Kind of makes it hard to take the rest of the poll seriously.

But, I like to look at trends. One trend I keep being told is valid is that vaccine refusers tend to be more educated and more well off financially. Basically, smart successful people tend to question vaccines, with the implication that this means the idea has merit.

The poll doesn’t bear this out.

Take question 2, the Government Mandate question quoted in the rally:

“Parents should have the right to decide which vaccines their children receive without government mandates.”

Parents with a high school education or less were in favor 51% of the time

Parents with a college education were in favor 57% of the time

Parents with grad school education? 48% of the time. Still high, but isn’t that interesting. Grad school educated parents were about 10 points less favorable to the idea than college educated parents.

How about income levels?

Parents with $75K annual income were in favor 48% of the time. Still high, but isn’t that interesting. High income parents were about 10 points less favorable to the idea than middle class families.

The income trend–where the high income parents were much less favorable than the middle income families–was the case for 4 of 5 questions:

Parents should have the right to decide which vaccines their children receive without government mandates.

I am concerned about serious adverse effects of vaccines.

The government should fund an independent scientific study of fully vaccinated vs. unvaccinated individuals to assess long-term health outcomes.

I am concerned that the pharmaceutical industry has undue influence over government vaccine mandates.

Frankly, I’d probably be counted as supporting the ideas of the self-styled vaccine choice movement based on careful wording of surveys. Doesn’t mean I actually support those organizations.

As an aside, the effort to rebuild Dr. Wakefield’s image is on. It’s just really weak. Dan Olmsted blogged about it at the Age of Autism blog. It is a rather odd piece. First, Dan Olmsted, regular at the Autism One conference (this rally was basically a satellite to that conference), didn’t attend the rally. Nor did any of the principle AoA bloggers. Mr. Olmsted finishes his piece with a statement about how autism was invented in America with thimerosal….How that supposedly supports Mr. Wakefield and his MMR hypothesis, I am unable to ascertain.

Mr. Wakefield’s book came out this week. You can read a good review of it here, Andrew Wakefield Fights Back, and save yourself the time and money of buying the book. Mr. Wakefield’s supporters have targeted Amazon.com to boost the ratings of the book, pushing it to something under 20 in the new books bestsellers list. At the same time, Barns and Noble had the book at about 28,000. In other words, don’t expect it to be on any real best seller lists soon. They are just manipulating a rather useless number.

Age of Autism called for a rally to support Mr. Wakefield following his appearance on the Today Show. There is no followup, no pictures and the post calling for the rally is rather uncluttered by comments from people claiming to have attended. Not even a comment from David Kirby, a short subway ride away. I really wish I had been there with a camera to see if there was any turnout at all.

On short notice, skeptics were able to rally more people to attend the “vaccination choice” rally in Chicago.

Yes, a fair fraction of the roughly 200 people who attended the rally were there as a protest. The rally, timed to coincide with the AutismOne conference, pulled only a small fraction of the AutOne attendees.

Are these groups “mainstream”? Do they represent the real thoughts of the people? I rather think not.

There’s been a bit of a blogstorm this week on Andrew Wakefield. I’m sure he will pop up from time to time in the future, but, let’s face it: He’s old news. He’s been telling everyone who will listen that “he’s not going away”. Doesn’t mean he’s still relevant.

Social influence and the autism epidemic

28 May

Prof. Peter Bearman at the University of Columbia has spent considerable effort studying the autism data from the California Department of Developmental Services.

I wrote about Prof. Bearman’s paper Social influence and the autism epidemic before. It just popped up in pubmed.

When I checked the website for the center where Prof. Bearman’s team works, I found the press release from the paper:

Study: “Social influence” playing role in increased autism diagnoses

Social influence plays a substantial role in recent increases in autism diagnoses, according to a study in the March, 2010 issue of the American Journal of Sociology.

The study, by researchers from the Institute for Social and Economic Research at Columbia University, found that children living near a child who has been previously diagnosed with the disorder are far more likely to be diagnosed themselves in the following year. The proximity effect is not due to environmental factors or contagious agents, the study found. Rather, it is due mainly to parents learning about autism from other parents who have a child diagnosed with autism.

“We show that the likelihood of getting an autism diagnosis is clearly associated with person-to-person transmission of information,” said Peter Bearman, a sociologist who authored the study along with Ka-Yuet Liu and Marissa King. “Parents learn about autism and its symptoms; learn about doctors who are able to diagnose it; and learn how to navigate the process of obtaining a diagnosis and services from parents who have already been through the process with their own child.”

The researchers stress that the results do not mean that autism is not real or that it is overdiagnosed. “Our study doesn’t address the underlying cause of autism,” Dr. Bearman said. “We are describing the mechanism by which the number of diagnoses is increasing. It could be that the real incidence of the disorder is only now being uncovered. I think that is a reasonable message from this paper.”

In California, where this study was conducted, the number of autism cases handled by the California Department of Developmental Services increased 636 percent between 1987 and 2003.

The Columbia University team looked at data on over 300,000 children born between 1997 and 2003 throughout California. The team found that children who live within 250 meters of a child with autism have a 42 percent higher chance of being diagnosed with the disorder in the following year compared with children who do not live near a child with autism. Children who lived between 250 meters and 500 meters from a child with autism were 22 percent more likely to be diagnosed. The chance of being diagnosed decreases significantly the farther children live from another child with autism.

The study used several tests to determine whether these results could indeed be explained by a social influence effect, or if environmental toxicants or a virus are to blame. For example, the researchers looked at children who live close to each other, but on opposite sides of school district boundaries. These children are likely exposed to the same environmental conditions, but their parents likely belong to different social networks. The research shows that the proximity effect only exists when parents reside in the same school district. Children who live equally close to a child with autism but in another school district were no more likely to be diagnosed with the disorder than children who do not have a neighbor with autism.

The results also showed the proximity effect to be strongest among children on the milder side of the autism spectrum. That is also consistent with a social influence explanation, Dr. Bearman says. “Parents of severely disabled kids are more likely to recognize the disorder without needing input from social contacts, so we would expect to see a weaker social influence effect there, and that’s exactly what we found.”

The Strength of Social Influence

The data set used in the study allowed the researchers to judge just how strong the influence effect is compared to other factors that may be driving the epidemic. For example, previous studies have found a link between autism and parents’ ages. Parents today are having children later in life, and that could be causing autism cases to increase. Other studies have found that parents’ education plays a role as well. Better educated parents may be more likely to obtain a diagnosis for their children.

The Columbia team found that each of these factors plays a role in the epidemic, but the social influence phenomenon was the strongest. The researchers estimate that the proximity effect explains about 16 percent of the recent increases in autism diagnoses. Put another way, if no child lived within 500 meters of a child with autism, there would be a 16 percent reduction in autism diagnoses. That effect was stronger than the other factors tested. For example, the mother’s age explained about 11 percent of the increase. The mother’s education accounted for 9 percent.

The study was funded by the NIH Pioneer award for innovative health research.

What caught my eye was that last paragraph, where they note that 16% of the increase can be accounted for from this social influence phenomenon, but also that 11% was due to increased maternal age and maternal education accounts for another 9%.

This is in addition to diagnostic substitution, which accounts for about 25% of the increase in the CDDS client caseload.

One of the footnotes in the Social Influence paper also caught my eye:

The strong positive association of autism (during the period of increasing prevalence, 1992–2000) with socioeconomic status (King and Bearman 2009b), coupled with the increasingly negative socioeconomic status gradient for MR (arising from differential abortion rates for fetuses identified as chromosomally damaged through amniocentesis), has led to a relative stigma reversal and a consequent decline in the rate of MR diagnoses.

King and BEarman, 2009b is a “working paper” at Columbia University (“The Increased Prevalence of Autism.” Working paper. Columbia University, Paul F. Lazarsfeld Center for the Social Sciences.)

One feature that is very interesting in the paper is the how the level of “functioning” of the child relates to the social influence effect. The basic result of the paper is that when a family lives near another family with an autistic child, they are more likely to obtain CDDS services under the autism label. That effect is stronger for “high functioning” autism. To me, at least, this seemed counter intuitive. Here is a graph from the paper showing that the social influence effect means that a child with “high-functioning” autism is about 40% more likely to be registered with the CDDS if he/she lives close to a family with an autistic child.

The trend with proximity is very clear, as shown in the figure below. The probability of a child be registered with the CDDS with an autism label drops off very smoothly and clearly with distance to a family whose child was recently diagnosed. This is not seen for mental retardation.

As the authors point out:

Compared with children who are 501 meters–1 kilometer away from their nearest neighbor with autism, those in close proximity (1–250 meters) to a child with autism have a 42% higher chance of being diagnosed with autism in the subsequent year. Proximity of 201–500 meters increases the chance by 22%. In contrast, being farther away from a child with autism reduces the chance of a diagnosis.

I know this is a repeat in many respects. But I also have found this work to be very interesting and thought it worthwhile to bring up these points I didn’t discuss before.

Death better than autism says Andrew Wakefield

28 May

When I first got involved in this, 15 years ago, I got a call from a parent in the North of England who said ‘Dr Wakefield please do not judge me harshly but when I die I’m taking my child with me, because I’m the only one who loves him’ and I didn’t judge that mother at all. In fact I was moved by the love of a mother must have for her child to take his life rather than him fall upon a society that really didn’t give a damn.

http://vimeo.com/12079650 from 2:30 to 3:25.

Those who are regular readers of LBRB may guess how I felt upon hearing such words coming from a man who swore as a doctor to do no harm. If nothing else, they confirm exactly the type of human being Andrew Wakefield is. I also note he waited until _after_ the GMC hearings before expressing such an extreme viewpoint.

I believe that death is not better than autism. Part of the reason LB/RB exists and continues to exist is to counter the idea that autistic people are second hand citizens who can be done away with because of false ideas that they are ‘inconvenient’. There are no reasons based in any morality that it is ever OK to kill another human being. The fact that the other human being might be autistic is irrelevant.

I was already disgusted and appalled at the money grabbing callousness of Andrew Wakefield. Now I find myself more than anything, relieved that the GMC acted as they did and that he has no more access to children in the UK.

The American Rally for Personal Rights – bit of a damp squib

27 May

Yesterday was the American Rally for Personal Rights (an anti-vaccine rally) held between 3pm and 5pm in a park in Chicago, US. In attendance was ex-doctor Andrew Wakefield in whose honour the rally was held.

Hoping for thousands, the organisers got what looks like a hundred or so (click for full size).

including one young man (A certain J. Crosby, Age of Autism Editor) who carried the sign ‘Autistics for Wakefield’

I’m not entirely certain who the autistics were. I mean I see Jake but no one else. Also in attendance were Wade Rankin, Erik Nanstiel, Boyd Haley, Bob Krakow and Jim Moody and for ‘name’ anti-vaxxers that was it. No Jenny McCarthy, No Jim Carrey, No Generation Rescue, No Age of Autism bigwigs (aside from young master Crosby of course).

Of course for bloggers such as I, this is a tad disappointing. There’s not really a lot to talk about when nothing much happens, nobody of any consequence shows up and the whole thing resembles a rain-soaked firecracker.

On the bright side, there were The Refusers who I’m pretty sure would’ve been good for a very hearty laugh. Aside from that – nothing really to tell. The sun was out, some anti-vaxxers waved a few signs around and the world collectively yawned.

See ANB’s take on it, he actually attended the rally himself.

Andrew Wakefield/Today Show interview transcript

27 May

Reformatted and tidied up from a commenter on a Yahoo Group

INTRO

MATT LAUER: [But]…in the years following his publication in The Lancet.no large scale study could reproduce exactly what Dr. Wakefield’s small study found. Dr. Wakefield is here for an exclusive interview. Doctor, good morning.

WAKEFIELD: Good morning Matt.

MATT LAUER: It may sound like a strange way to start the interview but…do I still refer to you as Doctor?

WAKEFIELD: Yes, they can’t take away the fact that I have a medical degree.

MATT LAUER: You were not surprised by this action … the stripping of your medical license. Why?

WAKEFIELD: Not at all. It was determined from the very beginning I believe, the pressure the government brought on the GMC .. to find this ruling.

MATT LAUER: You don’t think this was an impartial panel?

WAKEFIELD: I think that the panel .. whether they believe they were influenced or not .. were certainly of this opinion .. when I read their decision which came out in February .. this decision had been made from the outset.

MATT LAUER: Doctor is this the final blow to your credibility? Doctor, I mean if you look at the studies that have been conducted since your research wved your theories. The fact that The Lancet has since said, “If we knew then what we know now, we wouldn’t have published the study in the first place”. You lost your job down in Texas and now your medical license. Is that it?

WAKEFIELD: The findings we made originally have been replicated in five different countries of the world. So, the bowel disease in these children exists. This is a little bump on the road .. and .. that’s how it should be perceived. It’s a bump on a very bumpy road .. but .. it’s a bump. What it does not detract from is the fact there are millions of children out their suffering .. and .. the fact that vaccines can cause autism. That’s a fact that’s accepted by the American government … because they have been settling cases of vaccine induced autism since 1991.

MATT LAUER: You say to me the findings have been replicated. I have seen studies, several major studies. Your study involved twelve children … I’ve seen studies that involved hundreds of thousands of children that do not replicate your findings. And, so, today .. will you sit across from me and tell me you still believe there is a possible link between tha particular vaccine .. the MMR vaccine .. and .. autism in children?

WAKEFIELD: Not only do I think it .. but .. the American government has conceded that it exists. A causal relationship between vaccines and autism exists .. and .. they have actually been secretly settling cases as early as 1991. Out of court as well.

MATT LAUER: As you know, we have talked to people since we had a chance to meet .. when you were kind enough to sit down for that exclusive interview with us .. and .. people in our government have said “NO! NO! We no longer believe this. We went out and checked out the possibilities and we no longer believe this to be true.” And .. every doctor I’ve spoken to says “It’s dangerous … it’s dangerous to even keep talking about it because .. every time you talk about it .. parents stop vaccinating their children .. and .. some children are dying from preventable diseases”.

WAKEFIELD: Matt, you are missing the point. The point is .. despite denying it .. in the public relations campaign they waged against me and against the parents .. they are conceding these cases in vaccine court.

MATT LAUER: What’s your next step .. real quickly?

WAKEFIELD: My next step is to continue this work till it’s natural conclusion. These parents are no going away, the children aren’t going away ..and .. I most certainly am not going away.

MATT LAUER: Dr. Andrew Wakefield, thank you for joining us. I appreciate your time….

Anne Dachel, Age of Autism Editor, makes remarkable claim

27 May

I was browsing the comments section of a seemingly innocuous story about autism – that early intervention might not be the universal panacea once thought – when I came across a comment from Anne Dachel, one of the leading ‘thinkers’ and editors behind the online anti-vaccine blog Age of Autism.

…I think a disorder that was unheard of 25 years ago…

I had to read it a couple of times to make sure I was seeing it right – I was – Anne Dachel believes autism was unheard of prior to 1985.

To say this is a remarkable claim is being overly fair to Dachel. Its one of those claims that is regularly made by the Age of Autism team that leaves one’s jaw on one’s chest with the sheer audacity of either its boldness or stupidity. It reminds one of John Best’s claim that autism was unheard of in China prior to 1999. Another rampant piece of stupidity.

As previously noted, Dachel writes for Age of Autism. I’ll leave you to form your own conclusions as to the accuracy of their blogging based on their Editors own bizarre beliefs about autism.

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