Left Brain/Right Brain

CBS Pulls Attkisson From CPAC Award Event

2012-02-10T02:43:57Z

Sharyl Attkisson, CBS journalist best known here for her bias towards those promoting autism as a vaccine injury, was slated to accept an award Thursday from Accuracy In Media (AIM). This was discussed on Left Brain/Right Brain recently.

Media Matters is reporting CBS Pulls Attkisson From CPAC Award Event.

CBS still accepted the award, though:

CBS Correspondent Sharyl Attkisson did not appear at the Conservative Political Action Conference today to receive her journalism award from fringe group Accuracy In Media (AIM), despite previous reports that she would speak at the event. Instead, CBS Vice President and Washington Bureau Chief Christopher Isham accepted the award on her behalf.

As one commenter on MediaMatters wrote, this just looks like Ms. Attkisson had better things to do. It would have been good, in my opinion, for CBS to decline the award.

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The Panic Virus: now in paperback

2012-02-09T02:22:59Z

The Panic Virus came out just over a year ago. We discussed it on Left Brain/Right Brain (here and here). As one who has spent a great deal of time reading and writing about the autism/vaccine discussion, I found the book to be extremely well researched and very well written.

The author, Seth Mnookin, now teaches science writing at the Massachusetts Institute of Technology (MIT) and writes for the PLoS blogs.

Here is a blurb on the book:

WHO DECIDES WHICH FACTS ARE TRUE?

In 1998 Andrew Wakefield, a British gastroenterologist with a history of self-promotion, published a paper with a shocking allegation: the measles-mumps-rubella vaccine might cause autism. The media seized hold of the story and, in the process, helped to launch one of the most devastating health scares ever. In the years to come Wakefield would be revealed as a profiteer in league with class-action lawyers, and he would eventually lose his medical license. Meanwhile one study after another failed to find any link between childhood vaccines and autism.

Yet the myth that vaccines somehow cause developmental disorders lives on. Despite the lack of corroborating evidence, it has been popularized by media personalities such as Oprah Winfrey and Jenny McCarthy and legitimized by journalists who claim that they are just being fair to “both sides” of an issue about which there is little debate. Meanwhile millions of dollars have been diverted from potential breakthroughs in autism research, families have spent their savings on ineffective “miracle cures,” and declining vaccination rates have led to outbreaks of deadly illnesses like Hib, measles, and whooping cough. Most tragic of all is the increasing number of children dying from vaccine-preventable diseases.

In The Panic Virus Seth Mnookin draws on interviews with parents, public-health advocates, scientists, and anti-vaccine activists to tackle a fundamental question: How do we decide what the truth is? The fascinating answer helps explain everything from the persistence of conspiracy theories about 9/11 to the appeal of talk-show hosts who demand that President Obama “prove” he was born in America.

The Panic Virus is a riveting and sometimes heart-breaking medical detective story that explores the limits of rational thought. It is the ultimate cautionary tale for our time.

If you were waiting for paperback to save some money, here’s the Amazon.com link. Other booksellers will have it too.

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Autism SA battles for funds

2012-02-09T02:09:55Z

For most within the autism communities, I suspect that charities are chosen with great care. Whether under- or un-employed autistic or a parent concerned about providing for a child, each dollar counts to many of us. But if you will allow me to suggest a charity to consider: Autism South Africa

I was reminded of Autism SA while reading another blog. The Simons Foundation SFARI blog has a discussion of a recent study on Autism in Africa. The study they focus on is Excess of non-verbal cases of autism spectrum disorders presenting to orthodox clinical practice in Africa – a trend possibly resulting from late diagnosis and intervention. On many levels this study is important to me. But, what I’m writing about now is based on a comment:

Things are not improving fast enough. South Africa’s main autism charity, Autism SA, has only two months left if it doesn’t get funds to continue. http://www.sowetanlive.co.za/news/2012/02/08/autism-sa-battles-for-funds The majority of doctors, psychologists and other healthcare practitioners in South Africa and the rest of Africa are not trained to diagnose autism.

Autism South Africa’s website includes a link to how to donate. I just sent a few Rand their way, it’s pretty easy.

2 comment(s) for this post:

Julian Frost:
2012-Feb-09 Thanks for this, Sullivan. I'm not a member of Autism SA, but I am a SOuth African.
Autism Blog – Autism SA battles for funds « Left Brain/Right Brain | My Autism Site | All About Autism:
2012-Feb-09 [...] See the original post here: Autism Blog – Autism SA battles for funds « Left Brain/Right Brain [...]

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Sharyl Attkisson to receive media award

2012-02-08T20:58:48Z

Sharyl Attkisson has been one of the less reliable members of the media when it comes to the autism/vaccine discussion. She promotes the purported link, defended Andrew Wakefield and gave David Kirby (of Evidence of Harm fame) a platform to promote his views.

For example. Recall a few years back when the Hornig study (Lack of Association between Measles Virus Vaccine and Autism with Enteropathy: A Case-Control Study) came out definitively putting to rest the idea that MMR causes autistic regression/GI disease with persistent measles measles infection. Ms. Attkisson wrote a piece, New Study Disproves Vaccine/MMR/Autism Link.

But she didn’t write about the new study or how it disproves the MMR/autism link.

There’s a new study in the Public Library of Science regarding vaccine measles and autism which purports to disprove a vaccine/MMR/autism link.

Also, researchers at ThoughtfulHouse wrote an opposing analysis:

She didn’t discuss the study at all. Instead she linked to printed a press release by (then) Andrew Wakefield’s Thoughtful House.

Readers won’t be surprised that I was dismayed to read that she’s now getting an award. From “Accuracy in Media“, to be given out at the Conservative Political Action Conference.

Dismayed that is until I saw what “Accuracy” in Media has as a track record.

Here’s a particularly egregious example of an article from an “Accuracy in Media” “report“:

Repealing the ban on open homosexuals serving in the U.S. military would be a mistake of historic proportions but the mainstream media are turning a blind eye.

The intro is bad enough. The discussion worse. Why? Well, the author of that hate piece is

Dr. Scott Lively, a Massachusetts attorney and pastor, is co-author, along with Kevin E. Abrams, of The Pink Swastika: Homosexuality in the Nazi Party.

Yes. The Nazis were gay. How does the saying go, you can’t parody a farce? Read more examples of AIM’s “accuracy”in CBS To Receive Award From Fringe Group At CPAC. With links to AIM’s support of the Birthers and other outlandish claims against President Obama.

Well, this farcical organization is going to “honor” Sharyl Attkisson. I guess there is something worse than getting a “Gallileo” award from the Age of Autism.

4 comment(s) for this post:

Science Mom:
2012-Feb-08 Brian Deer received the prestigious British Press Award, Sharyl Attkisson, the CPAC "Accuracy in Media Award". A perfect honour bestowed upon her for her, ahem, impeccable reporting and I'm sure she won't see how embarrassing this really is.
Catherina:
2012-Feb-08 Do we know whether she intends to accept it?
ScienceScienceScience:
2012-Feb-08 The Daily Show skewered Scott Lively. I can't stop giggling. http://www.thedailyshow.com/watch/wed-july-28-2010/gay-reichs
Sullivan:
2012-Feb-08 "Do we know whether she intends to accept it?" She's on the schedule for the conference. Thursday at 3:45, if I recall correctly.

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Redwood City teacher accused of slapping, kicking special needs students

2012-02-07T05:24:32Z

This by way of the Sam Jose Mercury News: Redwood City teacher accused of slapping, kicking special needs students

If the title of the news story isn’t enough, here are some details:

A Redwood City special needs teacher faces nine misdemeanor charges for allegedly slapping, kicking and refusing food and drink to two developmentally disabled boys at Roosevelt Elementary School, a prosecutor said.
The boys were part of a special education pre-school class taught by Alexia Aliki Bogdis, 43, of Millbrae and had been abused between December and January, said San Mateo County Chief Deputy District Attorney Karen Guidotti. One of the boys was slapped in face and kicked in the stomach, while the other had bumped into a table after the teacher kicked his chair, had his wrist twisted and was deprived of food and drink, she added.

You can read the whole story at the mercury news. Frankly I have a hard time expressing the outrage I feel at these stories.

3 comment(s) for this post:

Shannon:
2012-Feb-07 I would remind us all that these are allegations, and I hope there is no truth to them.
Sullivan:
2012-Feb-07 Shannon, thanks for that. I appreciate what you had to offer about such cases. http://www.squidalicious.com/2012/02/fair-witness.html
Health buzz:
2012-Feb-07 lol teacher kicking special needs students :S

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A Multisite Study of the Clinical Diagnosis of Different Autism Spectrum Disorders

2012-02-05T06:22:46Z

This study came out towards the end of last year. Given the current interest in the DSM-5 diagnostic criteria and how they may impact the numbers of individuals diagnosed with PDD-NOS and Asperger syndrome, this seems timely.

The study had a large number of authors. As a multi-site study, this is not surprising. The lead author is Cathy Lord. She is part of the DSM-5 work group on neurodevelopmental disorders.

The author list and the abstract are below. I’ll pull the conclusion from the abstract out for now:

Clinical distinctions among categorical diagnostic subtypes of autism spectrum disorders were not reliable even across sites with well-documented fidelity using standardized diagnostic instruments. Results support the move from existing subgroupings of autism spectrum disorders to dimensional descriptions of core features of social affect and fixated, repetitive behaviors, together with characteristics such as language level and cognitive function

To put it simply (and with less precision, but let’s go with this): Whether one is diagnosed as Asperger, PDD-NOS or Autistic Disorder is more dependent on where one is diagnosed than what one’s scores are on the tests given.

Seems likely this is part of the reason why there’s a move to incorporate all ASD’s under a single label.

The “lines” between autistic disorder, PDD-NOS and Asperger syndrome are blurred to say the least.

Here is the full author list:

Lord C, Petkova E, Hus V, Gan W, Lu F, Martin DM, Ousley O, Guy L, Bernier R, Gerdts J, Algermissen M, Whitaker A, Sutcliffe JS, Warren Z, Klin A, Saulnier C, Hanson E, Hundley R, Piggot J, Fombonne E, Steiman M, Miles J, Kanne SM, Goin-Kochel RP, Peters SU, Cook EH, Guter S, Tjernagel J, Green-Snyder LA, Bishop S, Esler A, Gotham K, Luyster R, Miller F, Olson J, Richler J, Risi S.
Source

Weill Cornell Medical College, White Plains (Dr Lord), Nathan Klein Institute for Psychiatric Research, Orangeburg (Dr Petkova), and Department of Child and Adolescent Psychiatry, New York University (Drs Petkova and Gan and Ms Lu), Division of Child and Adolescent Psychiatry, Columbia University Medical Center (Drs Algermissen and Whitaker), and Simons Foundation (Ms Tjernagel), New York, New York; Autism and Communication Disorders Center (Drs Green-Snyder, Gotham, Miller, Olson, and Risi and Ms Hus) and Departments of Pediatrics and Human Genetics (Dr Martin), University of Michigan; Ann Arbor; Emory University School of Medicine (Drs Ousley, Klin, and Saulnier), and Marcus Autism Center, Children’s Healthcare of Atlanta (Dr Klin), Georgia; Center for Autism Research, Children’s Hospital of Philadelphia, Pennsylvania (Dr Guy); Departments of Psychiatry (Dr Bernier) and Psychology (Dr Gerdts), University of Washington, Seattle; Departments of Molecular Physiology and Biophysics and Psychiatry, Vanderbilt Kennedy Center (Dr Sutcliffe), and Departments of Pediatrics (Drs Warren and Peters) and Psychiatry (Dr Warren), Vanderbilt University Medical Center, Nashville, Tennessee; Division of Developmental Medicine, Children’s Hospital Boston, Harvard Medical School, Massachusetts (Drs Hanson, Hundley, and Luyster); Center for Autism Research and Treatment and Department of Psychiatry, Semel Institute of Neuroscience, University of California Los Angeles (Dr Piggot); Department of Psychiatry, Montreal Children’s Hospital, Québec, Canada (Drs Fombonne and Steiman); Thompson Center for Autism and Neurodevelopmental Disorders, University of Missouri, Columbia (Dr Miles); Department of Pediatrics, Baylor College of Medicine, Houston, Texas (Drs Kanne and Goin-Kochel); Institute for Juvenile Research, Department of Psychiatry, University of Illinois at Chicago (Dr Cook and Mr Guter); Cincinnati Children’s Hospital Medical Center, Ohio (Dr Bishop); Department of Pediatrics, University of Minnesota, Minneapolis (Dr Esler); and Department of Psychological and Brain Sciences, Indiana University, Bloomington (Dr Richler).

And here the abstract:

CONTEXT:

Best-estimate clinical diagnoses of specific autism spectrum disorders (autistic disorder, pervasive developmental disorder-not otherwise specified, and Asperger syndrome) have been used as the diagnostic gold standard, even when information from standardized instruments is available.

OBJECTIVE:

To determine whether the relationships between behavioral phenotypes and clinical diagnoses of different autism spectrum disorders vary across 12 university-based sites.

DESIGN:

Multisite observational study collecting clinical phenotype data (diagnostic, developmental, and demographic) for genetic research. Classification trees were used to identify characteristics that predicted diagnosis across and within sites.

SETTING:

Participants were recruited through 12 university-based autism service providers into a genetic study of autism.

PARTICIPANTS:

A total of 2102 probands (1814 male probands) between 4 and 18 years of age (mean [SD] age, 8.93 [3.5] years) who met autism spectrum criteria on the Autism Diagnostic Interview-Revised and the Autism Diagnostic Observation Schedule and who had a clinical diagnosis of an autism spectrum disorder. Main Outcome Measure Best-estimate clinical diagnoses predicted by standardized scores from diagnostic, cognitive, and behavioral measures.

RESULTS:

Although distributions of scores on standardized measures were similar across sites, significant site differences emerged in best-estimate clinical diagnoses of specific autism spectrum disorders. Relationships between clinical diagnoses and standardized scores, particularly verbal IQ, language level, and core diagnostic features, varied across sites in weighting of information and cutoffs.

CONCLUSIONS:

Clinical distinctions among categorical diagnostic subtypes of autism spectrum disorders were not reliable even across sites with well-documented fidelity using standardized diagnostic instruments. Results support the move from existing subgroupings of autism spectrum disorders to dimensional descriptions of core features of social affect and fixated, repetitive behaviors, together with characteristics such as language level and cognitive function.

5 comment(s) for this post:

Mike Stanton:
2012-Feb-05 No Fred Volkmar, then?
Autism Blog – A Multisite Study of the Clinical Diagnosis of Different … | My Autism Site | All About Autism:
2012-Feb-06 [...] Go here to read the rest: Autism Blog – A Multisite Study of the Clinical Diagnosis of Different … [...]
RAJ:
2012-Feb-07 It's not possible to predict whether DSM5 will 'stop' the autism epidemic in its tracks or will actually accelerate the autism epidemic. DSM-IV (1994) was designed to stop the overdiagnosis of autism that occurred with the publication of DSM-III-R (1987) but had the opposite effect. Current psychiatric opinion in autism that is being reflected in the DSM5 proposals is that autism is dimensional ranging from profoundly handicapped to normal variation. Take the introversion/extroversion quiz published in Time magazine. If many of the questions seem similar to autism trait quizzes (autism spectrum questionnaire, social reciprocity scale), its because they are. http://healthland.time.com/2012/01/27/quiz-are-you-an-introvert-an-extrovert-or-an-ambivert/ About 20% or more people taking the quiz score as being likely to have an introverted personality type. The psychiatric dogma of defining normal characteristics personalty traits as a mental disorder,for example (geeks=autism) continues to expand. Plomin's group in the UK has been reporting on 'autistic traits' in the general population by recruiting thousands of twin pairs recruited from the TEDS twins registry and have reported that 5% of all general population children were found to possess ‘extreme autistic-like traits’ and “Around 10% of all children showed only social impairment, only communicative difficulties or only rigid and repetitive interests and behavior, and these problems appeared to be at a level of severity comparable to that found in children with diagnosed ASD in our sample'. http://dept.wofford.edu/neuroscience/neuroseminar/pdfFall2011/4-explaining-autism.pdf Its unkown whether DSM5 will stop the autism epidemic in its tracks or will further expand population prevelance rates to 5%, 10% or even 20%.
Sullivan:
2012-Feb-07
It’s not possible to predict whether DSM5 will ‘stop’ the autism epidemic in its tracks or will actually accelerate the autism epidemic.
That's not the goal of the DSM 5. Are you aware of that? Given your next statement, I don't think you are. I've got a strange idea--how about make the DSM 5 as a method to accurately diagnose all autistics? Not to chase down some political viewpoint of yours or someone you misquote. If you take a quiz in Time Magazine as "psychiatric dogma" it is clear how your logic train went off the tracks.
Current psychiatric opinion in autism that is being reflected in the DSM5 proposals is that autism is dimensional ranging from profoundly handicapped to normal variation. Take the introversion/extroversion quiz published in Time magazine.
I assume you have little idea how strange the above reads. The second sentence just does not follow from the first. Why should we consider the quiz in Time magazine? It isn't related to autism. It isn't related to the discussion at all. Are we going to be taking a quiz from Cosmo next?
Its unkown whether DSM5 will stop the autism epidemic in its tracks or will further expand population prevelance rates to 5%, 10% or even 20%.
Hysteria. Sorry to call it out, but that's what you are doing there.
daedalus2u:
2012-Feb-08 This is interesting. If I am reading it correctly, it seems to indicate that there is a degree of subjectiveness in an ASD diagnosis that can't be eliminated using present definitions and diagnostic criteria. That raises the question of where the subjectivity of ASD diagnosis lies, in the person with the ASD, or in the clinician doing the diagnosis? If the subjectivity is in the clinician, then there isn't an objective thing called “autism”, it is a categorization that will change as the clinician population changes. This also means that there will always be false positives and false negatives, and these will be different for different clinicians.

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Yale Daily News: Redefinition of autism sparks concerns

2012-02-03T17:12:34Z

The proposed changes to the way autism is diagnosed with the DSM 5 has sparked a lot of discussion in the online autism communities and elsewhere. A surge in the discussion came in response to a New York Times article New Definition of Autism Will Exclude Many, Study Suggests, in which the Times discussed preliminary results of a study by Prof. Volkmar of Yale.

The Times put the emphasis on reducing the “autism surge”, quoting Prof. Volkmar as saying “We would nip it in the bud”:

The new analysis, presented Thursday at a meeting of the Icelandic Medical Association, opens a debate about just how many people the proposed diagnosis would affect.

The changes would narrow the diagnosis so much that it could effectively end the autism surge, said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the new analysis of the proposal. “We would nip it in the bud.”

The Yale Daily News has an article “Redefinition of autism sparks concerns” where they sought more dicussion from Prof. Volkmar:

“I think [the proposed revision] is a mistake,” Volkmar said. “It changes people’s eligibility for key services, and a lot of people expressed concern.”

He said the change would not only affect autistic patients’ access to medication and medical services, but also impact their eligibility for special schools. Volkmar also questioned the scientific validity of the decision.

You can read more about this story on the Yale Daily News website.

5 comment(s) for this post:

RAJ:
2012-Feb-03 Why wouldn't Yale publish this article favorable to Fred Volkmar's views. He heads the Yale study group on autism. Volkmar headed the field trials for DSM-III-R (1987) and DSM-IV(1994). Volkmar has been subjected to criticism for his direct contribution to the so-called 'autism epidemic'. He either resigned or was given the chance to resign from the working group on DSM5 autism. He either considers himself to be a whistleblower on the wrong headedness of the DSM5 working group on autism or is a disgruntled partisan defending his own role in the false epidemic of autism.
Sullivan:
2012-Feb-03 Sorry RAJ, could you explain? I don't believe I have insight into what Prof. Volkmar is thinking, whereas you have repeatedly suggested you do. The minor question is not whether the Yale newspaper is favorable to his views, it is what those views are. You have made statements about what you perceived those views to be. Does he feel that the majority of those currently diagnosed with autism are (a) accurately diagnosed and should keep the diagnosis and services (as the quote in the article noted above would indicate) or (b) feels that there is a "false epidemic of autism" as you assert? On a more substantive note, do you think it worthwhile to wait for actual data? Perhaps from Prof. Volkmar's paper and from the DSM-5 field trials? Just to be clear, that's my position. That we need to work from data. Not your opinion. Certainly not your opinion of what someone else thinks...especially when you seem to be wrong on that point.
Laurentius Rex:
2012-Feb-04 It's not often I find myself in agreement with RAJ, but he is right about Volkmar. Volkmar knows it is a political game, he admitted as much when I challenged him over DSMIV and the invention of the "Asperger's Disorder" many years ago. What wins in each subsequent revision of DSM is not anything like the truth, it is whoever has the most powerful lobby and every so often the orthodoxy shifts. Poor old Fred, he must be feeling rather left behind, but then to Yale, Asperger's Disorder simply represents big bucks and to some a career. I am content to keep the lable, but not on APA's or Volkmar's terms. Once it is relinquished as a diagnosis, it remains a viable and valid identity for some, and it doesn't need Volkmar's help in keeping that, quite the opposite.
Roger Kulp:
2012-Feb-07 I'm sort of confused.The New York Times article and others I have read,have said people who are higher functioning would no longer be diagnosed,but Volkmar specifically mentions those with intellectual disability.Does this mean people at both ends of the spectrum would now be excluded?
Sheogorath:
2012-Feb-09 @ Laurentius Rex: Please could you tell me when exactly Asperger's Syndrome was invented? I'd be very much intersted to know.

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Transcripts from the GMC hearings

2012-02-01T22:35:36Z

With the defamation suit by Mr. Wakefield filed in Texas there is the strong possibility that the discussions will ensue again about what actually happened during Mr. Wakefield’s research at the Royal Free hospital. The one record of this is in the transcripts for the GMC hearings. These can be found online in a few places (casewatch and Sheldon 101’s blog Vaccines Work, for example). These are useful resources but somewhat cumbersome. Most people are not going to download a file to check a quote in context. And context can be very important, as we’ve seen here on Left Brain/ Right Brain where previous discussions by Mr. Wakefield’s supporters often involved pulling quotes out of context.

I don’t want to clutter this site with the transcripts, but I do want them in a place where internet search engines can find them and people can easily link and check quotes. So I am now uploading them to a new blog. It should take a few days to get the transcripts online in this format. About 30 days worth are up now.

In doing so I re-read some of the pages. One of the best examples of what happened is covered on Day 28. This is the day when the mother of Child 12 (last of the 12 children in the Lancet study) testified.

This one day’s testimony addresses many of the discussion topics which come up repeatedly in online discussions:

1) Parents of the Lancet Children were not prevented from testifying at the GMC.

2) She was the only one who did testify. She was the only one called by the GMC. The defense appears to have not called any of the parents.

3) Mr. Wakefield’s attorney declined the opportunity to even cross examine this parent.

4) The idea that Mr. Wakefield only reported what parents told him isn’t well supported by the evidence. Rather, there is a very circular route for the idea that the MMR causes autism. Mr. Wakefield and Mr. Barr (the attorney working on the litigation) were in contact with this parent multiple times before the child was seen at the Royal Free.

5) Some of the children in the Lancet study were registered with Legal Aid at the time of the study, and well before the Lancet paper was published.

6) The idea that the children were referred through normal channels is not accurate. While this child was referred through general practitioners, there was much contact between the mother, Mr. Wakefield and the attorney before that. One letter from the attorney makes it clear that they expressly told the parents to be sure to get the GP referral.

7) The idea that this work was not a research study isn’t really accurate. Mrs. 12 repeatedly gives her impression that they were involved in a research study.

Yes, this has all been covered before. Unfortunately, I fear this will all be covered repeatedly as this new case works its way through the court.

With that, here are some excerpts from the Day 28 testimony. Which you can check in context.

Q I think it is right that at around the same time, as well as that contact with Dr Wakefield, did you also have some contact with a firm of solicitors called Dawbarns?
A Yes, that is right.

Q Can you tell us how that came about. Why did you get in touch with them?
A The same mother told me about them as well.

Q What was your understanding of what they were doing?
A They were trying to really put a stop to the MMR vaccine being used and obviously to stop any damage that was being done to children.

Emphasis added. Mrs. 12 thought that Dawbarns “were trying to really put a stop to the MMR vaccine being used”.

After contacting the lawyers, she received a letter. This is dated 18 July 1996. Her son wasn’t seen at the Royal Free until 18 October, 1996, three months later:

“Dear [Mrs 12],

Thank you for contacting us regarding the MMR vaccination. We are investigating a number of vaccine damage cases and are also (with Messrs Freeth Cartwright Hunt Dickens of Nottingham) co-ordinating and managing the Mumps Measles and Rubella cases on behalf of the Legal Aid Board for the whole country. Recently the Legal Aid Board has also extended our contract to investigate claims following the Government’s measles/rubella vaccination campaign in the autumn of 1994.

To give you an idea of our work I enclose an information pack which consists of a copy of a fact sheet which we have produced on the MMR vaccine and a fact sheet on ourselves.

We have built up a considerable volume of evidence that vaccines can cause injury to children, and we are hoping to take compensation claims to court. See the fact sheets for more information. Legal Aid is now being granted in vaccine damage cases where we can show a close link up in time between the vaccine being administered and the onset of recognised side effects. In claims being brought on behalf of children the Legal Aid Office does not take into account the finances of the parents, but there are sometimes difficulties in obtaining legal aid …”

She was supplied with a “fact sheet” written by Mr. Wakefield. No contamination of the study there, right? In the Lancet he’s just reporting what the parents told him. No mention of the issue of the parents being supplied with a “fact sheet” to guide them.

Richard Barr (the attorney managing the litigation effort and teamed with Andrew Wakefield) wrote her on 14 August 1996

“We are also in touch with other experts and together they are hoping to establish a link between the vaccine, inflammatory bowel disease and autism. There is a clear cut biological mechanism for linking the two conditions. I suggest it might be worth your while to contact Dr Wakefield. If you would like me to do so I will be happy to make the introduction for you. May I have permission to send him a copy of the statement that I have prepared for [Child 12]?”

They are hoping to establish a link and “there is a clear cut biological mechanism for linking the two conditions [bowel disease and autism]”. Two months before being seen at the Royal Free she is informed about the effort to link MMR with autism and bowel disease and the idea that autism and bowel disease are linked.

Clearly any study reporting “what the parents told us” is contaminated at this point.

If you think the study could be salvaged, even with this level of contamination, here is a discussion of the fact sheet supplied to the parents as mentioned above:

Q The next document was a fact sheet, and that apparently comes from the Royal Free Hospital School of Medicine, as you will see at the top of the page. If I can just run through what some of that says, it is headed,

“Inflammatory Bowel Disease, measles virus and measles vaccination.

What is inflammatory Bowel Disease (IBD)?

IBD comprises 2 conditions that have many similarities. Crohn’s disease and ulcerative colitis. Crohn’s disease may affect any part of the bowel, from mouth to anus, whereas ulcerative colitis affects the large bowel only. Many people now believe that these two conditions are part of a single spectrum of intestinal disease. IBD is often difficult to diagnose in children, especially Crohn’s disease, and this may lead to a delay in diagnosis with frustration for parents, doctors and, in particular, the affected children.

What is the link with measles and measles vaccine?

Measles virus was put forward as a possible cause of Crohn’s disease in 1989. The dramatic rise in the incidence of inflammatory bowel disease in developed countries over the last 30 years, in the face of live measles vaccination, also suggested a link between the vaccine and the disease.

Several groups from around the world have now identified measles virus in tissues affected by Crohn’s disease and an immune response to measles virus in the blood of patients with Crohn’s disease and ulcerative colitis. Early exposure to measles virus appears to be a major risk factor for developing Crohn’s disease later in life, and one study recently linked live measles vaccine to both Crohn’s disease and ulcerative colitis. Several new studies are currently underway that are designed to clarify the association between measles vaccination and inflammatory bowel disease. Although no studies have formally examined the issue, we have been aware of a large number of new cases of childhood IBD following the MR revaccination campaign in November 1994”.

Then the fact sheet sets out what you would look for (and what you should do: contact Andrew Wakefield):

Q The next document was a fact sheet, and that apparently comes from the Royal Free Hospital School of Medicine, as you will see at the top of the page. If I can just run through what some of that says, it is headed,

“Crohn’s disease. The symptoms and signs of Crohn’s disease in childhood are often insidious and non-specific and may lead to a delay in diagnosis. Intestinal symptoms include mouth ulcers, cramping abdominal pains, loss of appetite, diarrhoea with or without blood and problems in the anal region, including skin tags, tears or abscess formation. However, children commonly present with weight loss and failure to thrive as the only indications that they may have Crohn’s disease. But be aware, unexplained joint paints, sore eyes and skin rashes can also be the presenting symptoms of Crohn’s disease.

Ulcerative colitis is often more clear-cut, with diarrhoea, urgency and blood and mucus mixed in with the stools. Again, growth failure and symptoms such as joint pain may precede the intestinal problems.

What should we do?

If you suspect that your child has inflammatory bowel disease, prompt referral to a specialist centre is essential. Either the diagnosis will be excluded and your mind put at rest, or it will be confirmed and the appropriate treatment instituted. As a first step you should contact Dr Andrew Wakefield at the Royal Free Hospital”,

A document by Wakefield, possibly from the Royal Free says that there is a link between Crohn’s disease and the measles vaccine. This given to prospective study subjects before being seen at the Royal Free. But no contamination of the study subjects again, right?

Child 12 was registered with Legal Aid before in August, two months before being seen by the Royal Free:

Q Also enclosed with that letter of 14 August 1996 were the legal aid forms. I think that is right. Did you fill in the legal aid forms in order for an application to be made for your child to be legally aided?
A Yes.

One issue that Mr. Wakefield has brought up in recent years is the concern over vaccines containing the Urabe strain of mumps. Mr. Wakefield has gone into detail about how he was informed by a “whistleblower” about how the government handled the licensure of those vaccines. Mr. Wakefield had those discussions with the whistleblower in 1999 but appears to have done little with the information until the past few years. Why? Perhaps this comment by his colleague Richard Barr will shed some light onto this: “Although Immravax and Pluservix were withdrawn on safety grounds, the particular problem they caused was fairly limited. ” It was the opinion of Mr. Barr at the time that the Urabe strain mumps concerns with some of the MMR vaccines was “fairly limited”. Mr. Barr and Mr. Wakefield, of course, had a different avenue to pursue: the measles/gut disease/autism hypothesis.

In Sept. 1996, Barr sent Mrs. 12 a newsletter:

Under the heading, “Pilot study”,

“If we can prove a clear link between the vaccines and autism/inflammatory bowel disease this will be exceedingly useful, not only for cases involving those conditions, but also for other types of damage such as epilepsy.

To obtain the evidence to do this, we will be running a pilot study. Around 10 children with symptoms which are closely linked to the vaccine will be extensively tested by a team of doctors headed by Dr Wakefield at the Royal Free Hospital in London. We will be selecting children to take part in the study from details and medical notes we already have. The investigations will involve a whole battery of tests to be carried out by a number of leading experts in their fields. We will of course be liaising closely with the families concerned and the doctors will be giving very full details of what will be involved”.

Need I point it out again? Before even arriving at the Royal Free, Mrs. 12 was informed about the need to provide a clear link between vaccines and autism/bowel disease.

Q We have heard from the Dawbarns newsletter that I read to you previously that as far as the solicitors were concerned there was a pilot study being arranged. Did you have any understanding or awareness whether your little boy was a part of that pilot study at all?
A He was referred to Dr Wakefield by my GP for investigations, which I understood to be research investigations, but that was the route he was referred.

She felt that her child was being referred for “research investigations”

Mr. Wakefield is keen to tell everyone that the referrals came through the GP’s. He doesn’t mention that he and Mr. Barr made sure ahead of time that they went through the GP’s:

“Dear Mrs [12]

Many thanks for your letter of 10 September 1996. I will contact some other parents in your area and if they agree then you can all swap names and addresses. It is interesting how isolated people feel (and sometimes are!).

I would like to see the records. These may well be helpful if we have any difficulties over legal aid. At the moment I am still waiting to hear from them.”

So that was the end of the correspondence, and I now want to ask you about the actual referral, which you have explained to us was through your GP to the Royal Free Hospital in respect of your boy. We have been through this already, but just to remind you, if you go back to the GP records, please, page 126, this is a letter that I asked you about when I first began to question you, Mrs 12, the letter from Dr Wakefield, and we see in that the suggestion that you in fact you should go to your GP for a referral. Did you do that?

Emphasis added.

On admission to the Royal Free:

Q “Soils – not had diarrhoea. Has variable abdominal pain”, and then I cannot read the rest of that sentence. Mr Miller is trying to assist me – “occurring every week”. Thank you. “Mother had not associated vaccination with his problems until met a parents support group”. Does that set out the problem as far as his gastrointestinal symptoms were concerned, I mean obviously in brief terms?
A Yes.

“Mother had not associated vaccination with his problems until met a parents support group”. Earlier in the transcript it is noted that this parent group included the mother of Child 6 and 7 and this is where Mrs. 12 was put in touch with Mr. Barr and Mr. Wakefield.

After her son was seen at the Royal Free, here’s the letter Mrs. 12 wrote. Note that she read the proposed “clinical and scientific study notes”. But this was just a routine referral, right?

“Dear Professor Walker-Smith,

I am writing following [Child 12’s] visit to the Royal Free Hospital last Friday 18 October 1996. My husband and I have thought long and hard about this situation since the appointment. We have also re-read Dr Wakefield’s proposed clinical and scientific study notes.

We do feel that [Child 12] does have a problem in that most children of his age do not soil themselves a number of times a day. As well as being pale in colour and foul smelling (as are his motions in general), this soiling is always very loose, which might explain why he is not always aware that he has done anything. Although I would not say it was diarrhoea exactly.

Obviously I do not wish to put my son through any procedures unnecessarily but there must be a reason why he has these problems. Also, as I mentioned to you at our meeting, [Child 12] is not growing or putting on weight like my other two children.

I keenly await the results of the blood tests and if you feel they warrant further investigations my husband and I are happy for him to be referred on to Dr Wakefield’s study project. As you pointed out, it might not help [Child 12] but if not hopefully it will be of benefit to others. There is also the chance that [Child 12] has a problem that can be detected and helped.

I do hope to hear from you in due course.”

In a letter to Mr. Wakefield she notes:

“Finally, I would like to say how nice it was to meet you at the JABS open meeting on 4 October in London. I found your short discourse both informative and interesting. I wish you all the best with your research.”

Yes, Wakefield was lecturing at JABS (an organization focused on vaccine injury) meetings. Mrs. 12 attended. This is Oct. 4, two weeks before her child was seen at the Royal Free.

Once again, we are in the merry-go-round. Mr. Wakefield only reported what the parents told him, except that here we have a clear example of a parent hearing from Mr. Wakefield on more than one occasion about what he was investigating.

The first visit to the Royal Free was not with Mr. Wakefield (Mr. Wakefield did not have clinical duties). Child 12 wasn’t even going to be referred to Mr. Wakefield at first:

Q So that was from your point of view, but you say in your letter to Dr Wakefield, Professor Walker-Smith’s main reasons for not referring [Child 12] on to Dr Wakefield was the absence of blood in the faeces and the lack of diarrhoea, you were saying that is what Professor Walker-Smith’s view was, is that correct?
A Yes.

But a blood test was “slightly abnormal” so they did make the referral.

“Dear [Mrs 12],

I do apologise for the delay in replying to your letter of 28 November. The slight abnormality that you referred to in your letter was that one of the markers of inflammation was just slightly above the normal range, it just means that we should go ahead. I understand that [Child 12] is coming in in the New Year to have a colonoscopy.”

A “slight abnormality” was enough to warrant a colonoscopy. Oddly enough, a later letter states that the blood tests were not abnormal.

The psychiatrist was not very clear on autism diagnosis:

Q If you to go page 18 in the medical records, we have a note dated 10 January, and in fact we have heard some evidence from Dr Berelowitz and he has given evidence in relation to all the children, including your son, and it was his evidence that this was his note, and we see at the bottom a diagnosis of “language delay ? [attention deficit disorder]” and then “? Asperger’s”: do you have any recollection of that?

The Royal Free didn’t think child 12 should have an MRI or a lumbar puncture.

Q If we go back to the Royal Free records – you can put FTP7 away, you will not need it again – at page 21 – it is on 6 January, so the day after the admission – at the bottom of the page it says, “[Ward round] Professor Walker-Smith” and it is a note signed by presumably a junior doctor, “colonoscopy” and then it gives, “prominent lymphoid follicles …” and “? some minor inflammatory changes” and then it says, “not to have MRI or L.P.” In other words, not to have an MRI scan and not to have a lumbar puncture. Then, Wednesday to have a barium meal. Were you aware at all of that note, Mrs 12? Were you aware at the time that that instruction had been given?
A No.

Emphasis added. But a colonoscopy and lumbar puncture were performed:

Q You say that you recall your son having a lumbar puncture and an MR scan; were you there for those?
A Yes.

Q You have obviously given consent for the MR but were you actually there when they were carried out?
A Yes.

Q Both of them?
A Yes.

Again, Mrs. 12 felt this was a research project:

Q You have told us that you thought that your son was part of a research investigation. Did you have any understanding as to which of those investigations, all of them or any of them, were part of the research investigations?
A As far as I understood, it was all part of the research into this possible link between the problems that [Child 12] had and the vaccine.

The tests apparently showed some immune activation

“Dear [Mr and Mrs 12],

I am writing to confirm the results from [Child 12]’s visit in the New Year. All were normal, including test for Fragile X, except the immune test. This shows evidence of persistent viral infection; i.e. [Child 12]’s immune system is activated in such a way that indicates it is trying to deal with some sort of ongoing viral infection. If you need to discuss these further please contact Dr Wakefield. I have passed on your query about gluten free diets to Dr Wakefield. I hope that [Child 12] is well and that his aching knees are settling”.

Then she gives some results at the bottom of the page. It shows,

“Full blood count and inflammatory markers – normal (i.e. no evidence of anaemia or inflammation”,

and various other negative tests.

Emphasis added. But above we read that the reason why Child 12 was referred for a colonoscopy was because a blood test indicated possible inflammation.

In June 1997, after the work at the Royal Free was finished, the attorney, Richard Barr, wrote to Mrs. 12:

“Thank you for your letters of 3 and 10 May 1997. I am sorry about the delay in coming back to you. I inevitably seem to be behind with my correspondence.

I haven’t heard anything more from the Vaccine damage Tribunal”.

Then he says,

“I haven’t had a copy of the Meridian TV item”,

so obviously you had made some reference to it, because he says,

“I would be very interested to see a copy if you can organise it some time.

We are all waiting for Andy Wakefield to deliver the goods and I really think that if he can provide the proof he thinks he can it is going to be much easier to win the cases.

I am interested in your comments about the rise in the incidence of mumps. What you say, of course, is absolutely correct.

I don’t think you have been updated on our fact sheet recently and in case it is of interest I enclose a further updated version. You will see that once again the section on autism has been extended. Don’t be deceived by the fact that it may not look quite as long as before. We have reduced the print size”.

Emphasis added.

After an extensive examination by the GMC’s attorneys, the defense was given an opportunity to cross exam:

THE CHAIRMAN: Mrs 12, as I indicated earlier, this is now the opportunity for representative counsel of the three doctors to cross-question you if they feel it appropriate. Are you happy to continue?
A Yes, that is fine.

THE CHAIRMAN: At any stage if you think that you need a little break, just give me a little hint and I am sure that the Panel will be quite sympathetic. Mr Coonan.

MR COONAN: Sir, I have no questions, thank you.

Mr. Coonan would be Mr. Wakefield’s attorney. He declined the opportunity to examine the one parent from the Lancet 12 who appeared at the GMC.

Mrs 12 was cross examined by Mr. Miller, attorney for Professor Walker-Smith.

Even as a summary this is long. But at least now people can easily check quotes in context.

2 comment(s) for this post:

Farmer's wife:
2012-Feb-02 So there you have it. The whole Wakefield scandal set out in the evidence of one of the parents. Children solicited, parent briefed on what to say before she came to the hospital, time-link embedded in the story before its given to doctors, no regressive autism, research not clinical care, admission plainly for litigation, no bowel disease markers found, vaccine damage suggested to mother by someone else involved with the lawyer, and no questions from Wakefield. Maybe one of his apologists can explain this case.
Science Mom:
2012-Feb-02
Maybe one of his apologists can explain this case.
Be careful what you wish for. I'm watching it right now on another forum. It's pure cognitive dissonance.

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Estimating the Prevalence of Autism Spectrum Conditions in Adults: Extending the 2007 Adult Psychiatric Morbidity Survey

2012-02-01T02:19:47Z

You may recall that a couple of years ago a study came out looking at the prevalence of autism in adults in the United Kingdom. They found a prevalence of about 1%, the same as in children.

There’s now a follow up study. The press release is below. The study can be found here. I hope to have the time to go into this in more detail in the next couple of days.

University of Leicester researchers lead on new autism study published today
Britain’s first adult autism survey reveals previously ‘invisible’ group with autism

New research on autism in adults has shown that adults with a more severe learning disability have a greater likelihood of having autism.

This group, mostly living in private households, was previously ‘invisible’ in estimates of autism.

Dr Terry Brugha, Professor of Psychiatry at the University of Leicester, led research on behalf of the University for the report Estimating the Prevalence of Autism Spectrum Conditions in Adults: Extending the 2007 Adult Psychiatric Morbidity Survey, which has today been published by the NHS Information Centre.

The report involved a survey of adults from learning disability registers in Leicestershire, Lambeth and Sheffield between August 2010 and April 2011.

Today’s report presents findings from a new study based on a sample of people with learning disabilities living in private households and communal care establishments. The findings are combined with information from the Adult Psychiatric Morbidity Survey (APMS) 2007, previously published by the NHS Information Centre, which included research on autism also led by Dr Brugha.

Dr Brugha, also a consultant psychiatrist working in the NHS with the Leicestershire Partnership NHS Trust, said: “We were surprised by how many adults with moderate to profound learning disability had autism because previous estimates pointed to lower rates in this group. Because they form a very small part of the adult population, when we added these new findings to the rate we had previously found in adults living in private households, and able to take part in our national survey in 2007, the overall percentage of adults in England with autism did not increase significantly over our 2007 estimate of 1%.”

“Our finding that about 60% of men with profound learning disabilities and 43% of women with profound learning disabilities have autism has never been shown previously. It may also seem surprising how many live at home with parents or carers who provide 24 hour care and shoulder a considerable burden: 42% of men and 29% of women with severe learning disabilities living with family members and in other private households have autism. Taken together with the 2007 survey findings this means that most adults with autism live in private households, and before these two surveys they remained largely invisible”.

Dr Brugha added “This new information will be of particular importance for those who plan and provide services to support those with learning disabilities. In March 2010, the Government published a national strategy for autism and guidance for the condition, with the view to improving the quality of services provided to adults with autism in England. Such improvements can only be achieved if the number of people with recognised and unrecognised autism is quantified. The strategy gave special emphasis to the need to train staff who have responsibility for identifying people with autism and their care. It will be vital to repeat such studies in future years in order to make sure that the national strategy is working effectively.”

Sally-Ann Cooper, Professor of Learning Disabilities at the University of Glasgow, who also contributed to the latest study commented: “Until now routine statistics have not been gathered on the numbers of people with learning disabilities who also have autism leaving this as a hidden problem. Our study clearly shows that the more severe to profound an adult’s learning disability is, the more likely they will be found to have autism if actually assessed.”

2 comment(s) for this post:

Roger Kulp:
2012-Feb-01 I would be curious how many adults,say over the age of thirty,have been diagnosed,as adults,as learning disabled,as I was.Awareness of LDs was nowhere what it is now,in the 70s,and 80s.I have a NVLD diagnosis as well as one of autism.I received both at the same time.NVLD came into being about the same time as the DSM-IV,before that I had a bunch of other nonspecific diagnoses.It was a bit of a surprise to me,when I learned adults were being considered as having a NVLD,and not being evaluated for autism. A lot of this comes down to both lack of self advocacy,and someone who is not in the health care system.It is not easy for an adult who is not in an institutional setting to get an autism diagnosis.You need to have a regular doctor you see on a regular basis,and just keep pestering them for an autism evaluation.Even with a pre-existing psychiatric diagnosis,you have to keep pestering your doctor for one.It may take a few years,but eventually they will give in. Other than that,I see no other way.There will never be mass public screenings,if that is what you are calling for.
Autism Blog – Estimating the Prevalence of Autism Spectrum … | My Autism Site | All About Autism:
2012-Feb-01 [...] See the rest here: Autism Blog – Estimating the Prevalence of Autism Spectrum … [...]

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Mother Jones: Rep. Dan Burton’s Legacy: Lots of Sick Kids

2012-02-01T01:08:12Z

Dan Burton, representative to the U.S. House of Representatives from Indiana announced today he would not seek re-election this year. Mother Jones has an article to mark the end of Dan Burton’s career in congress: Rep. Dan Burton’s Legacy: Lots of Sick Kids. The link says a lot “rep-dan-burton-goodbye-and-good-riddance”.

Stephanie Mencimer of Mother Jones starts out:

So Rep. Dan Burton (R-Ind.) is finally retiring, after two decades in Congress. He’s got a notable record of craziness, having doggedly pursued President Bill Clinton during the Monica Lewinsky scandal while knowing full well he’d had an affair himself and even fathered a child out of wedlock. He famously claimed to have shot up a “head-like object” (likely a melon or a pumpkin) to try to re-create the alleged “murder” of former Clinton deputy White House counsel Vince Foster, who committed suicide. But Burton doesn’t get enough credit for what may be his lasting legacy: helping turn Americans away from life-saving childhood vaccines.

Representative Burton has an autistic grandchild. Mr. Burton is of the belief that vaccines were causal in that autism. If you’ve read David Kirby’s book, “Evidence of Harm, Mercury in Vaccines and the Autism Epidemic: A Medical” you know that Rep. Burton is a major figure in that narrative.

Rep Burton helped promote Andrew Wakefield’s ideas, including a hearing held in 2000. Mr. Wakefield’s testimony is not exactly what I would call accurate. As is now well known, Mr. Wakefield was financially supported by attorneys seeking to prove a link between the MMR vaccine and autism. When Rep. Burton asked him about financial support, here’s how Mr. Wakefield responded:

Mr. Burton. Who funded your study, Dr. Wakefield?
Dr. Wakefield. We did. We have a small charitable
contribution, but——Mr. Burton. A charitable organization did; I see.
Dr. Wakefield. We found it a little difficult to get
funding——

Mr. Burton cut Mr. Wakefield off at this point, addressing another speaker at the hearing. “A charitable contribution” is a rather odd way to describe money from attorneys. Mr. Burton held at least six hearings on vaccines. That is not a problem. However, the evidence was going from weak to strongly against him over the years.

Mr. Burton has thankfully been more quiet on the issue in his recent years in office. Still, I’m with Mother Jones on this. Good Bye and Good Riddance.

1 comment(s) for this post:

MikeMa:
2012-Feb-01 Orac has a post on this at Respectful Insolence. Good riddance indeed Mr Burton.

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