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Frontline excerpt: Ashland Oregon

22 Apr

The PBS show Frontline has an upcoming episode called “The Vaccine War”. They recently posted a video excerpt of the episode. In this segment they follow a public health worker in Ashland Oregon, a community with one of the highest vaccine refusal rates in the US.

So, how is that vaccine refusal working out in Ashland? That’s in Jackson County, Oregon. I’m not alone in asking that question. One of the founders of Generation Rescue asked the same question recently

The Centers for Disease Control reports that 15 percent of children in Jackson County, Ore., are unvaccinated, Handley said. Someone needs to find out how these kids look comparatively. “It’s in the pockets of the unvaccinated kids where the first truths may be found,” he said.

Ashland appears to have an even higher vaccine refusal rate than the rest of Jacknson County. From the Frontline press release:

With an estimated quarter of the town’s children entering kindergarten not fully immunized, Ashland is one of the least vaccinated places in America.

So, Jackson County has a refusal rate of about 15% and Ashland about 25%. Let’s see what the Ashland City Council has to say. Here is a proclamation from the City of Ashland proclaiming Autism Awareness month

PROCLAMATION

“AUTISM AWARENESS MONTH”

• Autism is a complex neurobiological condition that appears at birth or typically before age three and occurs in one out of every 150 births each year in the United States.
• Autism affects the areas in the brain that regulate pragmatics of speech and perceptions of others, affecting how people with autism assimilate and express verbal and non-verbal communication, and sensory processing.
• Oregon has one of the highest rates of autism in the United States, with the Oregon Department of Education reporting 1 in 98 students on the autism spectrum, and in Ashland, 1.1 percent of students have been diagnosed which is the highest rate in Jackson County.
• While there is no precisely identified cause and cure for autism, Autism Centers of Excellence and institutions for education such as Oregon Health & Science University, and the Southern Oregon University Masters in Special Education program offer hope for recovery, and treatments to lead a rich and fulfilling life.
• Early Intervention services such as those provided by Asante Early Childhood Development can alter the course for children living with autism and their families in their ability to interact and communicate not only wants and needs, but dreams and aspirations.
• Adults living with Autism and Asperger’s Syndrome can find a warm and welcoming home and community in Ashland.

NOW THEREFORE, the City Council and Mayor, on behalf of the citizens of Ashland, hereby proclaim the month of April 2008 as:

“AUTISM AWARENESS MONTH”

and call upon the citizens of the City of Ashland to observe the month by learning about people with autism, their strengths, abilities, and the programs which serve their needs.

Dated this 4th day of March, 2008.

Barbara Christensen, City Recorder
John W. Morrison, Mayor

Keep in mind that the above proclamation involves educational data, which are not the same as real autism prevalence. That is especially problematic in Oregon, which has a very vague criterion for an educational diagnosis. But, that said, Ashland (with a vaccine refusal rate of 25%) had 1.1% of their students with educational diagnoses of autism, the highest in Jackson County and higher than the Statewide average.

Again, education data are fairly weak to begin with, and Oregon has a very loose definition of “autism”. But, that said, there isn’t evidence in the educational data that vaccine refusal is helping Ashland avoid autism.
In other words it looks like vaccine refusal is not protecting Ashland from autism.

Does autistic enterocolitis exist?

20 Apr

The piece below is from the blog justthevax, where it ran as “Independent” the Wakefield way (really something for the fail blog). I like this piece because, frankly, I wish I had done it. Catherina takes a look at the exact claims made by Dr. Wakefield’s supporters and shows that they are clearly false.

“Independent” the Wakefield way (really something for the fail blog).

One of the claims that keeps reappearing in the comments sections under articles covering the GMC ruling on Andrew Wakefield and colleagues is that

The key finding (chronic colitis found in ASD children) of Dr. Wakefield’s early case report published in The Lancet in 1998 HAS been independently confirmed by medical researchers in five different countries.

That is a very significant claim. After all, independent confirmation of a recent finding, would make the validity of a finding more likely, and if 6 independent laboratories found the same gut changes in autistic children, then then likelihood that this was a) a fluke or b) made up by Andrew Wakefield would be drastically reduced.

Finally, one of those commenters has posted those ‘independent confirmations’ – so I thought it might be worth having a look at them.

Krigsman, A. (Assistant Professor of Pediatrics, New York University School of Medicine Director of Gastroenterology Services), et al.,Ileocolonoscopy in Children with Autistic spectrum Disorder and Chronic Gastrointestinal symptoms. Autism Insights 2010:2 1-11.

Gonzalez, L., et al., Endoscopic and Histological Characteristics of the Digestive Mucosa in Autistic Children with gastro-Intestinal Symptoms. Arch Venez Pueric Pediatr, 2005;69:19-25.

Balzola, F., et al., Panenteric IBD-like disease in a patient with regressive autism shown for the first time by wireless capsule enteroscopy: Another piece in the jig-saw of the gut-brain syndrome? American Journal of Gastroenterology, 2005. 100(4): p. 979-981.

Balzola, F., et al., Autistic enterocolitis: Confirmation of a new infammatory bowel disease in an Italian cohort of patients. Gastroenterology 2005;128(Suppl. 2);A-303.

Galiatsatos, P., et al., Autistic enterocolitis: Fact or fiction. Canadian Journal of Gastroenterology. 2009;23:95-98.

Let’s look at number 1, Krigsman et al. The name sounds vaguely familiar. In fact, anyone who has read a little about the MMR-autism affair will know Arthur Krigsman as the clinical director of Thoughtful House, which happens to be the same Texas Clinic out of which Andrew Wakefield practises. One editor of “Autism Insight”, the journal in which this “independent confirmation” was published, is Andrew Wakefield (another one the senior author of the study, Carol Stott). Gosh, I bet peer review was harsh for this one.

Gonzales et al, number 2, has been published in “Arch Venez Pueric Pediatr” which stands for Archivos Venezolanos de Puericultura y Pediatría. It was a bit tricky to get my hands on the paper, especially since the citation was not quite right, but I did manage and was not surprised to find that indeed the authors cannot replicate Wakefield’s 1998 “findings” of a distinct autistic enterocolitis, although they do report a higher incidence of gastrointestinal problems in their autistic group.

Balzola et al, number 3, is a case report of one adult autistic patient with inflammed bowel.

Similarly, Balzola et al, number 4, is a meeting abstract (if anyone has access, could they email me that abstract, please) that never saw the light of day as a peer reviewed study.

Finally, number 5, Galiatsatos et al., is a case report, featuring two adult patients with gastrointestinal problems and an ASD diagnosis. The authors call for “more investigations” in their discussion.

So what do we have here? Three (3) genuinely published cases of autistic adults who had consulted a doctor for gastrointestinal problems and were found to have gastrointestinal problems. One conference report from April 2005 that has not gone through peer review and has not appeared in a real journal in the 5 years since the conference. One real study looking at over 50 autistic children which does not confirm Wakefield’s findings. And finally, one study by Wakefield’s buddies in a freshly founded journal run by Andrew Wakefield and his buddies, to say that their buddy Andy was really right all along – how is that for “independent” confirmation?!

Frontline: The Vaccine Wars

20 Apr

Frontline: The Vaccine War. I’ve already discussed this upcoming episode of Frontline.

Below is an extended press release they have for this episode.

I am very wary of giving groups like Generation Rescue any more media coverage than absolutely necessary. Their fake study, created for their appearance on the TV show “The Doctors” was a clear example of them using the media in what their own founder calls their effort to bring “… the U.S. vaccine program to its knees”.

With less than a half-dozen full-time activists, annual budgets of six figures or less, and umpteen thousand courageous, undaunted, and selfless volunteer parents, our community, held together with duct tape and bailing wire, is in the early to middle stages of bringing the U.S. vaccine program to its knees.

But how do you discuss the “vaccine war” without those very people waging war on vaccines? How can you leave out Barbara Loe Fisher who has not only spent 20 years attacking vaccines, but has recently tried to silence Dr. Paul Offit with a baseless lawsuit?

That said, here is the press release for the Frontline episode:

Vaccines have changed the world, largely eradicating a series of terrible diseases, from smallpox to polio to diphtheria, and likely adding decades to most of our life spans. But despite the gains—and numerous scientific studies indicating vaccine safety—a growing movement of parents remains fearful of vaccines. And in some American communities, significant numbers of parents have been rejecting vaccines altogether, raising new concerns about the return of vaccine-preventable diseases like measles and whooping cough.

In The Vaccine War, airing Tuesday, April 27, 2010, at 9 P.M. ET on PBS (check local listings), FRONTLINE lays bare the science of vaccine safety and examines the increasingly bitter debate between the public health establishment and a formidable populist coalition of parents, celebrities, politicians and activists who are armed with the latest social media tools, including Facebook, YouTube and Twitter, and are determined to resist pressure from the medical and public health establishments to vaccinate, despite established scientific consensus about vaccine safety.

“Scientifically, I think the matter is settled,” says Anders Hviid, an epidemiologist at the Statens Serum Institut in Denmark. In one of the largest and most comprehensive epidemiological studies available, Hviid and colleagues analyzed data on more than a half million children and found no link between the MMR “triple shot” for measles, mumps and rubella and an increased rate of autism—a link that’s been strongly asserted for years by anti-vaccine activists. Similar epidemiological studies in Denmark also failed to reveal a link between the mercury preservative thimerosal and autism. In fact, around the world, peer-reviewed epidemiological studies have found no link between autism and either the MMR shot or thimerosal.

But vaccine skeptics like celebrity Jenny McCarthy, whose son, Evan, was diagnosed with autism following a series of vaccinations, including MMR, are convinced that further study into the other 15 pediatric vaccines and their additives will ultimately reveal a link. “Something happened. And when I say something, I mean a behavior, a trigger,” McCarthy tells FRONTLINE. “Is it mercury? Is it the schedule? Is there just too many? My answer to people and what I’ve been telling them is, ‘It’s all of the above.’ We don’t know for sure, which is why we keep saying, ‘Study it.’”

Further vaccine safety research is what businessman J.B. Handley, who founded the autism support group Generation Rescue, has been calling for, too. Handley tells FRONTLINE he has little doubt that vaccines are responsible. “There is no real-world study that shows me that those six vaccines didn’t cause my son’s autism.”

Nowhere has The Vaccine War grown more heated than in Ashland, Ore.—an area that FRONTLINE learns is of high concern to the Centers for Disease Control and Prevention. With an estimated quarter of the town’s children entering kindergarten not fully immunized, Ashland is one of the least vaccinated places in America. Despite the best efforts of local pediatricians like Dr. Donna Bradshaw-Walters, many parents are simply not convinced that vaccines do more good than harm, and they’ve been using Oregon’s religious and personal-belief exemption to get out of the state vaccine mandate. “I think a child’s immune system is so immature,” says Jennifer Margulis, an Ashland writer and mother of four who chooses vaccine exemption. “If you read the list of ingredients about what you’re putting intramuscularly into your child, it’s scary.”

According to public health workers, however, Margulis’ decision puts the entire community at risk. Vaccines don’t work for everyone, and in some kids the effects wear off, so it’s only when everyone—or almost everyone—is immunized that “herd immunity” is effective. “There are hundreds of thousands of people in this country who cannot be vaccinated,” says Dr. Paul Offit, the chief of the Division of Infectious Diseases at The Children’s Hospital of Philadelphia and the inventor of a vaccine for rotavirus. “They’re getting chemotherapy for their cancers, or they’re getting immunosuppressive therapy. They depend on those around them to be vaccinated.”

Bioethicist Art Caplan argues that society has the right to coerce its parents to vaccinate their children even if vaccines carry a small risk. “Parents don’t have unlimited rights with respect to the welfare of their children. You can’t kill them. You can’t put them at risk of fatal disease. You can’t put them at risk of devastating disability.”

Surveys reveal that America’s conversation about vaccines is complex, involving not only medical risks and benefits but also ideological beliefs about parental choice and the limits of government. “This is true even of individuals who see the benefits of vaccines as substantial,” political scientist Hank Jenkins-Smith tells FRONTLINE. “They still want it to be a choice. They don’t want it to be compulsory.” Government control over individual choice is another factor fueling the anti-vaccine backlash, despite the peer-reviewed science that vaccines are safe.

“People now have a way to get the information they couldn’t before, to communicate it to other people, and to have a robust public debate that is not controlled by money or political power or by government policy,” says Barbara Loe Fisher, president of the National Vaccine Information Center. “Physicians are going to have to get over the idea that they tell people what to do, and people are going to do it without questioning.”

Audience Engagement:
?Beginning one week before broadcast, Wednesday, April 21, visitors to FRONTLINE’s web site can interact with medical experts who will be responding to comments and answering questions. Visitors can also take a survey featuring five key questions about their attitudes toward vaccines, and find out how well their responses match responses from a nationwide survey.

The Vaccine War is a FRONTLINE co-production with the Palfreman Film Group. The writer, producer and director is Jon Palfreman. FRONTLINE is produced by WGBH Boston and is broadcast nationwide on PBS. Funding for FRONTLINE is provided through the support of PBS viewers. Major funding for FRONTLINE is provided by The John D. and Catherine T. MacArthur Foundation. Additional funding is provided by the Park Foundation and the FRONTLINE Journalism Fund. FRONTLINE is closed-captioned for deaf and hard-of-hearing viewers and described for people who are blind or visually impaired by the Media Access Group at WGBH. FRONTLINE is a registered trademark of WGBH Educational Foundation. The senior producer of FRONTLINE is Raney Aronson-Rath. The executive producer of FRONTLINE is David Fanning.

here, again, is the video clip Frontline has:

Cool entry on another blog: Voices of Autism: a “lucky” mother’s perspective

17 Apr

Laura Shumaker is an author and also runs a blog on the San Francisco Chronicle website. I’ll admit, I haven’t read her book, “A regular guy, growing up with autism” yet. But every now and then someone sends me a link to her blog and I’ve liked what I’ve read.

In this piece, Voices of Autism: a “lucky” mother’s perspective, she let’s a guest blogger take the helm, Claire LaZebnik.

Claire talks about the progress her son made, from non-verbal to echolalic to mainstream with support to preparing for college.

It’s a nice piece, and well worth the minute or to to read.

She’s also had a piece in the New York Times, Adolescence, Without a Roadmap which I enjoyed and, I’ll admit, is what prompted me to write this piece linking to her work.

This section caught my eye:

“Hey, Mom?” he says as we’re walking out of a store. “That girl was hot.” He thinks he’s talking in a whisper but he isn’t, really, because he has voice modulation problems and has trouble hearing what his own voice sounds like. The lifeguard in the bikini at the beach is also “hot.” So is Jessica Alba, whose picture he printed and carefully glued onto his binder, next to a photo of Keira Knightley.

The term “hot” may be an affectation he picked up from his friends, but his appreciation of skinny girls with big breasts seems to be genuine, as we realized when we discovered he’d started using the Internet the way other teenage boys are likely to only when they think no one is watching.

We put content filters on our browser software, and his father sat down with him to go over some basic rules: Wait until you’re in love to have sex. Always wear a condom. Hide your pornography where your mother won’t find it. He’ll remember all this because they’re rules, and he’s very good at remembering rules.

Those links again, just in case:

Voices of Autism: a “lucky” mother’s perspective

and

Adolescence, Without a Roadmap

PBS Frontline: The Vaccine War

16 Apr

I first heard that the show Frontline, from the Public Broadcasting Service (PBS), would be doing a show on “The Vaccine Wars” by reading comments posted online by supporters of groups like Generation Rescue. I was somewhat taken aback that they were happy to hear this was coming as Frontline is a very evidence-based show. I couldn’t see it being very supportive of Jenny McCarthy.

Frontline’s website had this to say about the show:

Public health scientists and clinicians tout vaccines as one of the greatest achievements of modern medicine. But for many ordinary Americans vaccines have become controversial. Young parents are concerned at the sheer number of shots–some 26 inoculations for 14 different diseases by age 6–and follow alternative vaccination schedules advocated by gurus like Dr. Robert Sears. Other parents go further. In communities like Ashland, Oregon, up to one-third of parents are choosing not to vaccinate their kids at all. And some advocacy groups, like Generation Rescue, argue that vaccines are no longer a public health miracle but a scourge; they view vaccines as responsible for alarming rises in certain disorders, including ADHD and autism. This is the vaccine war: On one side sits scientific medicine and the public health establishment; on the other a populist coalition of parents, celebrities (like Jenny McCarthy), politicians and activists. It’s a war that increasingly takes place on the Internet with both sides using the latest social media tools, including Facebook and Twitter, to win the hearts and minds of the public.

I guess I am not on the “latest” social media tools, but I am blogging on the topic so I figure I count as a small part of the “war”.

Reading the above I felt that “The Vaccine Wars” was not going to be the Jenny McCarthy friendly show some were expecting. Being put on the side against “scientific medicine” is usually not a good thing. Also, Generation Rescue tries to pitch itself as being “pro safe vaccine” rather than anti vaccine. I doubt they would like to see themselves as being characterized as arguing “that vaccines are no longer a public health miracle but a scourge”. Then again, times may be changing with the founder of Generation Rescue stating:

With less than a half-dozen full-time activists, annual budgets of six figures or less, and umpteen thousand courageous, undaunted, and selfless volunteer parents, our community, held together with duct tape and bailing wire, is in the early to middle stages of bringing the U.S. vaccine program to its knees.

That’s hard to fit into a “pro safe vaccine” image.

One way to tell for certain if Generation Rescue and other groups are afraid of upcoming media attention is when they start attacking spokespeople like Paul Offit (chief of infectious diseases at the Children’s Hospital of Philadelphia, and co-inventor of the RotaTeq vaccine against rotavirus). When that happened (recent blog posts on the Age of Autism, resurrecting old, incorrect information) I knew it was likely that “The Vaccine Wars” was not going to be a pro-Jenny program.

As it turns out, a video clip has been added to the Frontline website for “The Vaccine Wars”:

And, guess what, Dr. Offit was interviewed by Frontline for the piece.

The show airs on April 27th, and will be available online then as well.

Perhaps it is time for those who support the vaccine-causation idea to re-evaluate their position. I can’t tell how many times I’ve been told I need to be “open minded” about the subject. Open minded includes being willing to admit that your ideas on vaccines-causing-autism were wrong.

Let’s see–

One of the main proponents of the idea, Dr. Andrew Wakefield, was found to be unethical and dishonest
The two main theories, really the only two theories, have failed (“not even close”) in the courts
The media is moving away from giving the vaccine-causation idea much weight.

Of course, maybe I’m wrong. Maybe FrontLine will finally tell the story the vaccine-causation groups believe. Maybe they will uncover the vast conspiracies that are hiding the truth. Maybe. I doubt it.

Brian Deer discusses Andrew Wakefield’s “autistic enterocolitis” in the BMJ

15 Apr

Before the General Medical Council reached a verdict on Dr. Wakefield, Brian Deer was promising that he was going to report on the data Dr. Wakefield used for his now retracted Lancet paper. We were told that he would give a first time ever view of a journalist allowed to check the facts on a scientific research paper.

After the GMC verdict was handed down, I watched the Sunday Times for such an article. I waited. Well, the wait is over. And it isn’t in the Times. Mr. Deer reports his findings in the British Medical Journal (BMJ).

Although much of the attention on Dr. Wakefield’s work has centered on the possible MMR connection, the topic of a “new syndrome” called “autistic enterocolitis” was proposed in that paper. In Wakefield’s “autistic enterocolitis” under the microscope, Mr. Deer takes a closer look at that claim. He does what is very rarely done: he obtained original data used for the study and obtains expert opinions on that data.

In his introduction, he notes the “new syndrome” and the MMR angles of the Lancet paper. Citing the press release from the Lancet paper:

“Researchers at the Royal Free Hospital School of Medicine may have discovered a new syndrome in children involving a new inflammatory bowel disease and autism,” the institution announced in a press release in February 1998. “Their paper . . . also suggests that in a number of cases the onset of behavioural symptoms was associated with MMR vaccination.”

Mr. Deer notes that before any patients were investigated, Dr. Wakefield was already proposing in a submission to the Legal Aid Board that such a new syndrome exists and it is linked to regression in children.

“In contrast to the IBD cases, which have a prima face [sic] gastrointestinal pathology, children with enteritis/disintegrative disorder form part of a new syndrome,” said Wakefield and the lawyer in a confidential submission for legal aid funding for the project in June 1996, before any of the 12 children in the paper had been investigated. “Nonetheless, the evidence is undeniably in favour of a specific vaccine induced pathology.”

For emphasis:

The evidence was “undeniably in favour of a specific vaccine induced pathology”.

Before children were investigated.

That on its own is huge. And, from what I can tell, not consistent with the image Dr. Wakefield is portraying in the alternative media.

That said, was there evidence of this “new syndrome”?

But when the children were brought in to the Royal Free for ileocolonoscopy, between July 1996 and February 1997, a snag in Wakefield’s project emerged. The hospital’s pathology service repeatedly judged colonic biopsy samples to be unexceptional, and thought bowel disease was a possibility in only one child.

The Royal Free’s own pathology service thought that the biopsy samples were unexceptional.

How can Mr. Deer make such a claim? He obtained data from the children’s records from their investigations at the Royal Free. Unfortunately, the actual samples are no longer available, but the reports are, and Mr. Deer submitted these to experts to review:

The biopsy slides are no longer available, according to one of the paper’s authors, Professor Amar Dhillon, but the GMC obtained all but one of the hospital pathology reports, and for the missing case I obtained the discharge summary. I passed the summary and reports to specialists for their reaction. They concluded that most of the 11 children reported as having non-specific colitis in the Lancet paper had been reported by the Royal Free as having normal pathology.

One expert reviewer stated:

“In the present reports and patients, overall, it is my impression that 8 of the 11 [for whom pathology reports were available] were normal,” Karel Geboes, a professor in the gastrointestinal pathology unit of the Catholic University of Leuven, Belgium, told me.

How does this compare to what was reported in the Lancet?

Eleven of the 12 children were said to have “non-specific colitis”: a clinically significant inflammation of the large bowel. In all 11, it was said to be “chronic,” while in four it was reported as both “acute and chronic.”

In other words, the report in the Lancet is not consistent with how experts interpret the pathology reports.

Mr. Deer further notes:

In fact the [Royal Free’s pathology] service identified findings suggestive of possible inflammatory bowel disease in only one of the 12 children. “The mild patchy generalised increase in inflammatory cells with lymphoid aggregates and follicles is not very specific but could be in keeping with low grade quiescent inflammatory bowel disease,” it reported for child 2. But this inflammation resolved after two months’ enteral feeding with a product now marketed as Modulen. A repeat ileocolonoscopy found no abnormality, and a food intolerance was diagnosed.

Yes, it appears that the pathology service, at Dr. Wakefield’s own hospital, at the time of the investigation, didn’t find evidence of abnormalities reported by Dr. Wakefied’s team.

In the GMC hearing, one of the co-authors on the Lancet paper, Dr. Susan Davies, discussed her concerns about the changes in the findings from normal to abnormal at the time of the investigation.

These changes—from normal to abnormal, or from healthy to diseased—had also raised concern in the mind of at least one of the paper’s authors. In September 2007, Davies, the lead histopathologist for the Wakefield project, was examined at length before the panel. “When you were given a draft of the Lancet paper, did you read it?” she was asked by Sally Smith QC, for the doctors’ regulator.
“Yes,” Davies replied.
“What was your overall view of the terminology used in relation to the histology findings in the Lancet paper, just when you read the paper?”
“I was somewhat concerned with the use of the word colitis.”
“First of all, what did you understand that word to mean?”
“I personally use that terminology, ‘colitis,’ when I see active inflammation, or a pattern of changes which suggest a specific diagnosis, and it was not my impression that the children coming through in the spasmodic way that they had, I [sic] had formulated some distinct pattern warranting that terminology.”

If even a co-author was concerned, and the hospital’s pathology reports don’t support the diagnosis of colitis, the obvious question would be: how did the paper reach it’s conclusions?

The answer appears to be that the results underwent a second review. This second review is discussed in the Lancet paper, but there is no mention of the review changing the interpretation of the data,

Mr. Deer poses an important question:

[H]ow many peer reviewers would have felt comfortable approving the paper if they had known that the hospital pathology service reported biopsy specimens as largely normal, but they were then subjected to an unplanned second look and reinterpreted?

Which we are fortunate enough to have answered. Mr. Deer was able to obtain an answer from one of the peer reviewers:

“I’m surprised the GMC didn’t make more of this,” said David Candy, paediatric gastroenterologist at St Richard’s Hospital, Chichester, who reviewed the paper in 1997. “That’s an example of really naughty doing—to exclude the original pathology findings.”

“Really naughty doing”. Not very clinical but I think it tells the story well.

Is it possible that the hospital’s pathology service missed the condition? Apparently at least one author (Dr. Walker-Smith, a co-defendant with Dr. Wakefield in the GMC hearings) noted this in his GMC testimony:

And how bad was this “colitis,” such that the hospital’s pathology service didn’t spot it as the children came through? Walker-Smith told the GMC panel that he had “concerns” about the service and its ability to detect inflammation.

In his report, Mr. Deer counters with:

Yet inflammatory indices that were not reported in the Lancet paper, including serum C reactive protein concentrations and other blood tests, were almost all within normal ranges for the 12 children.6 And as an alternative explanation for any inflammation that was present, nearly all of the children had constipation with megarectum16 (unreported in the paper), which specialists say can cause cellular changes.

Mr. Deer attempted to speak with Dr. Dillhon, a co-author on the Lancet paper. Dr. Dillhon viewed the slides made from the samples taken from the children, and he graded them with Roman numerals to rank the degree of inflammation. At some point, those Roman numerals were translated into “non-specific colitis”.

So who translated these scores on the grading sheet into findings of “non-specific colitis” in the paper? Dhillon says it wasn’t him. He says he would like to see the slides again, but they are missing from the Royal Free laboratory. “He [Dhillon], Andrew Anthony, and Wakefield all looked at them,” I was told, on Dhillon’s behalf, by a senior member of staff at the Royal Free. “Andy [Wakefield] then synthesised their results into what appeared in the paper.”

But still, according to Mr. Deer, “…how the Roman numerical scores, histopathological gradings for a variety of sites in the colon, became the “colitis” findings might, under such circumstances, be anybody’s guess.”

Mr. Deer posits a possible scenario, based on Dr. Wakefield’s complaint to the press complaints commission:

Wakefield wrote: “When the biopsies were reviewed and scored by experts in bowel pathology—namely, Drs Dhillon and Anthony—these doctors determined that there was mild inflammation in the caecum, ascending colon, and rectum,” he said. “This was correctly reported as non-specific colitis in the Lancet.” In other words, it looks like it was Wakefield who translated the scores.

A companion editorial was published in the BMJ by Prof. Sir Nicholas Wright, warden, of Barts and the London School of Medicine and Dentistry, Queen Mary University of London. He lists in his conflict of interest statement: “He has provided expert opinion in the case of Wakefield v GMC and acted as a character witness for Professor John Walker-Smith.”

His editorial:

Does autistic enterocolitis exist?
Despite the retracted Wakefield study, questions remain

His conclusion:

Is autistic enterocolitis a histopathological entity or even an entity at all? In view of the lack of data and the entrenched position of many of the protagonists and antagonists, any firm conclusion would be inadvisable. The expert review, referenced by Deer, concludes that key areas such as the prevalence and best treatment of gastrointestinal disorders in people with autistic spectrum disorders are incompletely understood, and that evidence based recommendations are not yet available. We should remember, as recent experience in several fields has shown, that although science has its defects, it is a self correcting process. Time is, perhaps, the wisest counsellor of all. In the meantime, this case offers a salutary reminder for researchers and journal editors alike that coauthorship means bearing responsibility for what is written.

First, I would submit that Dr. Wright is not being clear on the subject. It is not whether autistics have a greater prevalence of GI issues, or whether there is a difference in the treatment for autistics. The question is whether there is a specific entity which is unique to autistics: autistic enterocolitis. Further, it is also a primary question whether “autistic enterocolitis” is causal in autism. While one can hide behind the “you can’t prove a negative” shield, the answers at present appear to be no to both questions.

Second, the idea that science is a self correcting process is often times true. In this case, it clearly is not. The science, the Lancet paper, was not corrected through science but through investigative journalism. Without the stories in The Sunday Times, Dr. Wakefield’s “science” would likely still be in the official record of The Lancet. Much more, the Lancet study and the presumed expertise of Dr. Wakefield would have likely been key in litigation in the UK and the US. Without Mr. Deer’s continued scrutiny, the facts behind the research into the Lancet paper, specifically that the pathology reports on those children were not consistent with the findings of the paper, would almost certainly not have come to light.

Returning to Mr. Deer’s article, he concludes:

So what should we make of all this? Now the Lancet paper is retracted, its findings don’t officially exist. And, if Dhillon is right in saying the slides can’t be found, the ultimate proof is missing. All we have are the pathology reports, which independent specialists seem to agree are largely unremarkable. “They wanted this bad,” commented Tom MacDonald, dean of research at Barts and the London School of Medicine and coauthor of Immunology and Diseases of the Gut. “If I was the referee and the routine pathologists reported that 8/11 were within normal limits, or had trivial changes, but this was then revised by other people to 11/12 having non-specific colitis, then I would just tell the editor to reject the paper.”

Clearly the Lancet paper should have been rejected. But this isn’t just a scientific paper that made a bad conclusion. This paper impacted multiple families inside the autism communities to believe that their child’s autism was caused by MMR. This paper led many families in the autism communities to apply poorly researched “therapies” to their disabled children. This paper led many families to stop vaccinating their children, leading to outbreaks of measles in the UK and elsewhere.

It is easy to go through Mr. Deer’s paper in the BMJ point by point in a clinical fashion, noting how the research went awry, showing that “autistic enterocolitis” has what appears to be no founding in science. But how does one express the reaction to so much damage caused by Dr. Wakefield’s investigation?

Of course, a further question I have and I bet I share with Dr. Wakefield’s supporters is this: is Brian Deer finished or is there even more yet to be unearthed in this sad tale of research gone awry?

Blogging about IMFAR

12 Apr

INSAR‘s annual International Meeting For Autism Research (IMFAR) is convening in Philadelphia this May (May 20-22).

Thanks in part to a generous travel grant from the Autism Science Foundation, I’ll have the opportunity to attend – and of course I’ll be blogging about it here at LBRB.

For the most part, I plan to write about research, projects, researchers themselves, or talks that I find interesting and attain sufficient understanding, but I’ll also be sharing a little with LBRB readers, about the overall IMFAR experience upon my return. I’m also looking forward to attending the Autism Science Foundation’s “Science and Sandwiches” where plans for this IMFAR lunchtime edition include presentations “from six ASF-funded pre-doctoral students who will describe their new research projects”.

I’ve always been pleasantly surprised by, and appreciative of scientists in general. I’ve had the opportunity to exchange ideas with many over the last few years while writing articles at both LBRB, and Autism Street, and even had the benefit of informal peer review (for some of the more scientifically involved articles) prior to publishing.

If the opportunity arises to meet and talk with individual researchers, I also hope to write some brief “Meet the Researchers” type pieces for those who might be able to take 10 minutes for a few questions. Hopefully this can bring a certain aspect of personal conversation with some of the scientists who’ll attend this year to readers at LBRB.

As more details about the planned presentations (and even posters) become available, be sure to let me know about any you (dear readers) think look particulary interesting. Simply leave a comment, or drop me a note at:

autism blogger at gmail (remove the spaces, and use the symbol for at).

Illini with Asperger Syndrome wins slot in U.S. geography bee.

10 Apr

An article in the Chicago Tribune, Palatine student qualifies for National Geographic Bee in Washington, D.C., describes how a 13 year old won the slot for Illinois in the National Geographic Bee:

At night, 13-year-old Anton Karpovich curls up with a good atlas.

“Geography gives me a way to get away from the world,” said Anton, who has Asperger’s syndrome, a mild form of autism.

On Friday, he didn’t want to get away. Anton, an eighth-grader from Walter R. Sundling Middle School in Palatine, won the state qualifier for the National Geographic Bee.

The rest is on the Tribune’s website.

He gets a paid trip to DC for the national competition. I wish him good luck.

What changes are in store for Generation Rescue?

9 Apr

If you haven’t read the celebrity gossip news you may have missed it (and good for you!). Jenny McCarthy and Jim Carrey have split. As an aside, in classic Hollywood fashion, news also just came out that her ex husband is in a new celebrity relationship. I’ll never understand the way Hollywood uses relationships for image promotion.

That said, this is not an easy thing to blog about. First, there is the fluff component. This isn’t a celebrity gossip blog. Second, Jenny McCarthy’s kid is only seven. He doesn’t deserve to lose another father figure. I wish him well.

One question this poses is whether Jim Carrey will continue with Generation Rescue?

It appears not. Generation Rescue has revamped their website. The picture of Jim Carrey, Jenny McCarthy and Evan McCarthy is gone. GR is now just “Jenny McCarthy’s autism organization”. Jim Carrey is no longer on the page of the Board of Directors.

Jenny McCarthy and Jim Carrey were the wealthy celebrity couple that revitalized Generation Rescue. And, let’s face it, Jim Carrey is the part of the couple with most of the celebrity and wealth.

The Generation Rescue website is probably in flux so we shouldn’t jump to any conclusions about what is missing as of now. That said, consider this:

Not only is Jim Carrey missing, but Dr. Jill James is no longer listed as a part of their science advisory board.

Mention of Desiree Jennings is gone. (She is the person who claimed that a flu vaccination caused dystonia, a claim that didn’t appear to hold up to scrutiny ). I don’t think this signals anything other than it was a convenient time to quietly pull support for someone who was, well, a liability.

On the main page for Generation Rescue, Jenny McCarthy is pushing hard to get a $250,000 grant from Pepsi. Is this prompted by the loss of Jim Carrey’s financial support? If you haven’t seen the plea from Ms. McCarthy, consider it. At least the first 20 seconds. That way you can hear her state that Generation Rescue “…helps and Treats thousands, millions of children with autism”

Yes, millions of children are supposedly helped by Generation Rescue. That would be more autistic kids than in the entire U.S..

I remember when Jim Carrey first hit the scene. He paid for a full page ad for Generation Rescue in USA Today. Just up and paid for it. Those ads cost over $200,000 as I recall. Now GR is pushing hard for a grant of that size.

Jim Carrey was a bit of a lightweight when it came to autism and disability issues. He demonstrated that clearly at the Green Our Vaccines rally. But, he was an asset to Generation Rescue. His leaving can’t be helping GR.

A clarification

7 Apr

The following post was written by a group of LBRB authors

LBRB is produced by team of writers who do not always agree on everything. But we each expect the others to ensure that statements of fact can be corroborated. Mostly this works. But once in while these expectations are not met and one of us is so certain of their opinion that it is presented as fact. This happened recently with a story about Danish scientist Poul Thorsen, who is at the centre of investigations into the disappearance of $2 million in research grants. Because he was one of the authors on two studies that showed no evidence of a vaccine autism link anti-vaccine campaigners at The Age of Autism blog seized on this story as soon as it emerged and argued that Thorsen’s alleged dishonesty regarding the missing funds meant that these studies were tainted.

At the time, coming soon after Wakefield’s disgrace at the GMC and the withdrawal of his now discredited Lancet paper, this seemed a little too convenient. Was the story a fabrication? Were Age of Autism the willing victims of an elaborate hoax? One of our authors thought so and wrote a post which proved to his satisfaction that it was so. A second post by him compounded the error. Both posts were removed (as they were incorrect) and this one https://leftbrainrightbrain.co.uk/2010/03/autism-study-doctor-facing-grant-probe/ stands in their place.

Age of Autism is now trying to use this to attack LBRB founder Kev Leitch, saying he is to blame for allowing the now withdrawn posts to appear in the first place. And the rest of us are guilty by association. We are in good company.

Age of Autism regularly lies about those it sees as opponents. It famously exaggerated Paul Offit’s earnings from the vaccine, Rotateq, stated that he voted for its inclusion in the vaccine schedule and was reprimanded by a congressional committee. All false. None withdrawn.

Another bete noir for AoA is Richard Roy Grinker, whom they regard as an “epidemic denialist.” GRINKER’S STINKER: HIS WIFE RUNS THE IACC was their response to the news that Joyce Chung was the new executive secretary of the Interagency Autism Coordinating Committee. Apparently being married to someone AoA disagrees with makes you open to corruption.

They accused Simon Baron-Cohen of lacking humanity because he wrote about the positive aspects of autism. Eric Fombonne, Catherine Lord and Bennet Leventhal were called parasites because they gave evidence against the vaccine autism connection. They have campaigned against Julie Geberding when she was director of the CDC because, like Simon Baron-Cohen she “lacked humanity” for failing to agree that there was a vaccine induced autism epidemic.

None of these posts have been taken down. No corrections have been published. No apologies have been made. LBRB will continue to make mistakes and when they are pointed out we will correct them. We will continue to allow open debate in the comments to our posts. But we will not be lectured by the anti-vaccine fanatics and autism haters that infest The Age of Autism.

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