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Autism Frequently Missed in Children With Epilepsy

14 Dec

A recent study presented at the American Epilepsy Society annual meeting suggests that developmental delay in general and autism in specific might be undetected in a large fraction of children with epilepsy.

In Autism Frequently Missed in Children With Epilepsy, Allison Shelley of Medscape writes:

In a study presented here, the investigators tracked children younger than 5 years seen at an epilepsy monitoring unit and a ketogenic diet clinic for about half a year. They asked parents of the 44 children to complete the Ages and Stages Questionnaire, as well as an autism screening tool.

Most of the children (77%) screened positive for developmental delay; of these participants, a strong proportion (36%) had autism.

More than a third of patients had not been previously diagnosed as having developmental delay or autism and were referred for confirmatory evaluation.

Here is a video from the American Epilepsy Society discussing this:

The study is relatively small and is, to my knowledge, as yet unpublished. But it does present a potentially important idea that people with epilepsy should be screened for autism.

NVIC claims “intimidation” and “censorship” over Delta videos

16 Nov

The National Vaccine Information Center (NVIC) is angry with the American Academy of Pediatrics. It is very hard not to follow up a sentence like that with “so, what else is new?” The AAP promotes vaccines and vaccine safety. NVIC, not so much. What caused the present altercation? Both organizations were invited to place advertisements/information segments on Delta Airlines in flight entertainment for this month. After finding out that Delta would also host ads by NVIC, the AAP sent a letter to Delta.

In response, NVIC has issued a press release: “National Vaccine Information Center Calls Out AAP for Using Public Intimidation to Censor NVIC Flu Prevention Video Offered to Delta Travelers”

“Public Intimidation”? AAP sent a letter to Delta. That’s public intimidation? I (and others) obtained a copy of the letter and made it public. I guess that’s the “public” part. A weak argument. “Intimidation”? Sorry, just no evidence to support that word.

“Censor”? Strong words from Barbara Loe Fisher, who attempted to quash public discussion with her lawsuit against Paul Offit, Amy Wallace and Conde Nast. (a lawsuit she lost, just to remind you that free speech is still protected in the U.S.).

So, on the one hand we have NVIC and Barbara Loe Fisher who use lawsuits to try to change the public discourse, and the AAP who send letters on the other hand. And we are to believe it is the AAP who are promoting censorship?

Before we get to the NVIC press release, here is the letter that In Flight Media sent to organizations asking them to buy space for their “Lifestlye365-Cold, Flu, and Fall Allergy Season” series. Part of the offer by In Flight Media was the chance to advertise the organization.

Subject: IMA/Delta Air Lines Present “Lifestlye365-Cold, Flu, and Fall Allergy Season” Featuring [REDACTED]

Dear [REDACTED]

We would like to invite [REDACTED] to participate in our in-flight video series called Lifestyle 365, now airing on Delta Air Lines and Virgin America. We work with organizations around the globe creating in-flight video features that raise the profile on important topics affecting every ones lives. “Where you Live”…“How you Live”…and “What you Do”…it’s your Lifestyle 365.

For our November 2011 video segment we are producing a special health spotlight just in time for “Cold, Flu and Fall Allergy Season.” At a time of year when the weather is changing, kids are going back to school, and families are traveling for the holidays, it is important to raise awareness on the latest resources available for preventing and treating cold, flu and allergy symptoms. This is also a perfect time to remind our audience of the importance of adult and childhood vaccination by showing them when and where to go to get caught up on regular immunizations as well as this years’ flu vaccine. Why not take this opportunity to showcase your organization or product in front of millions of captive airline passengers!

We are proud to extend this opportunity to your organization and have attached additional details regarding pricing and exposure options for each airline. We are offering an exclusive 5-minute option for a rate of $49,500 (Standard is $75,000) with commitment by May 30, 2011.

Here’s a bit more on what you can expect by joining us in this program:

·Placement and production of content utilizing your raw footage within our Lifestyle365 program

·IMA to provide script, voice over and video production creative services at no additional charge, excluding all on- location shoot services.

·Delta Air Lines: Segment to air for a full calendar month on over 17,375 flights in front of an average of 2.5 million passengers

·Virgin America: Segment to air for 60 consecutive days, in front of 880,000 passengers on 7,500 flights

·Delta and Virgin America’s fleets are equipped with WIFI, passengers watching the program can log into your website right from their seat using their laptops or smart phones and instantly make a donation and learn more about your cause

·Show reference in Sky magazine and http://entertainment.delta.com/television/ (would link directly to your website).

·Your organization will maintain the rights to the completed piece to use in future marketing initiatives.

·Video placement on IMA’s YouTube channel, Facebook, and other social media sites

For more than a decade in the airline industry, In-Flight Media Associates (IMA) continues to bring the utmost level of innovation and creativity to organizations around the globe looking to reach the captive airline audience. With a core philosophy that entertainment attracts attention…advertising may not; they create and deliver messages that resonate with passengers in a non-intrusive way.

Our portfolio can be viewed at http://www.in-flightmedia.com. I will contact you in a few days to add more details, but please feel free to contact me at 760-944-6575, or via email at allison@in-flightmedia.com should you have any questions.

Thanks in advance for your consideration. We look forward to helping build Your Image in the Sky®.

Sincerely,

Let me draw your attention to two statements in the above:

“Why not take this opportunity to showcase your organization or product in front of millions of captive airline passengers!”

and

Delta and Virgin America’s fleets are equipped with WIFI, passengers watching the program can log into your website right from their seat using their laptops or smart phones and instantly make a donation and learn more about your cause

Clearly, a big piece of the motivation for organizations (NVIC included) to purchase time was to advertise themselves. NVIC acts as though the complaints (including mine) were not about this at all. How can I tell? Well, the NVIC has responded with a press release. A press release quite full of straw-man arguments:

WASHINGTON, Nov 15, 2011 (BUSINESS WIRE) — The non-profit National Vaccine Information Center (NVIC) is calling public pressure placed on Delta Air Lines by the American Academy of Pediatrics (AAP) to censor an NVIC video about flu prevention an “act of intimidation” to block public access to full and accurate health information about influenza.

NVIC was offered the opportunity to be a paid sponsor of a video about staying well during the flu season that would be included in Delta’s in-flight programming during November 2011. On Nov. 7, Forbes magazine published an article with a copy of a letter signed by the AAP President Robert Block, MD, accusing Delta of “putting children’s lives at risk” by showing travelers the NVIC sponsored video because it contains “harmful messages.”

In the AAP letter, the Pharma-funded medical trade association alleged that “The [NVIC] ad urges viewers to become informed about influenza and how to stay well during the flu season without resorting to the influenza vaccine.”

NVIC co-founder and president Barbara Loe Fisher responded, “Without cause, the AAP has used their considerable financial resources and political influence to intimidate Delta for simply showing a video that offers accurate information about ways to stay healthy during the flu season, including talking with doctors about getting a flu shot. Censorship and attacks on consumer advocacy groups working to institute informed consent protections in public health policies should not be tolerated in this or any society that cherishes free speech and the right to self determination.”

The AAP letter stated that “influenza vaccine continues to be the best way to protect against the disease,” without acknowledging that a recently published scientific study found that the flu vaccine is less than 70 percent effective in preventing influenza, which confirms previous studies questioning influenza vaccine efficacy and effectiveness. A top flu expert at the CDC has said that about 80 percent of flu-like illness reported in the U.S. every year is not influenza but is caused by other viruses and bacteria.

“The AAP’s leadership is clearly threatened by educated consumers, who have every right to engage in critical thinking when making choices about how to stay healthy,” said Fisher. “Why is the AAP so afraid to admit that washing our hands, covering our mouths when coughing, eating nutritious foods, getting enough sleep, exercising, and lowering stress are also important ways to stay well during the flu season and all year around?”

In the letter to Delta, the AAP alleged that NVIC “opposes the nation’s recommended childhood immunization schedule and promotes the unscientific practice of delaying or skipping vaccines altogether.” During NVIC’s three-decades of work to secure vaccine safety and informed consent protections in U.S. public health laws, NVIC has criticized one-size-fits-all vaccine mandates and advocated for more and better quality vaccine safety science but has not told individuals to use a particular vaccine schedule or told them not to get vaccinated.

“NVIC is a non-profit charity led by educated health care consumers. We are not doctors and do not tell people how or when to vaccinate or advise people not to vaccinate,” said NVIC’s Fisher. “We have a long public record of promoting well-informed, voluntary health care decision-making.”

This is the second time this year that the AAP has publicly attacked NVIC and taken action to censor information NVIC has made available to the public. In April, the AAP publicized a similar letter sent to CBS in an unsuccessful attempt to strong arm CBS into removing NVIC’s 15-second message shown on the Jumbotron in Times Square through the month of April.

Parent co-founders of NVIC worked with Congress on the National Childhood Vaccine Injury Act of 1986 and were responsible for securing historic informing, recording and reporting safety provisions in that law. The AAP and vaccine manufacturers lobbied Congress to secure a shield from civil liability for vaccine injuries and deaths in the 1986 law.

“Twenty five years ago, the AAP got liability protection for their pediatrician members, who are no longer accountable in a court of law when the liability-free vaccines they give ending up hurting a child,” said Fisher. “Almost immediately following the 1986 law’s passage, the AAP narrowed medical contraindications to vaccination so that, today, almost no child qualifies for a medical exemption to vaccination. Now, the powerful AAP is lobbying in states like California and Washington to strip parents of the legal right to exercise informed consent to medical risk taking for their children or file non-medical vaccine exemptions. This is becoming a civil and human rights issue involving censorship, inequality, discrimination and persecution of citizens by medical doctors wielding too much power.”

The National Vaccine Information Center (NVIC.org) is a 501C3 charity founded in 1982 by parents of vaccine injured children and is dedicated to preventing vaccine injuries and deaths through public education and protecting the informed consent ethic in medicine.

I will say I found this statement amusing: “Without cause, the AAP has used their considerable financial resources and political influence to intimidate Delta …”

Yes, the AAP used “considerable financial resources and political influence”. No ordinary organization could send a letter! Why, they used the United States Government in the form of the Postal Service to deliver their message. Would that I could tap into that sort of “political influence”.

Without cause? Perhaps NVIC could review the AAP letter, or the many complaints others have made about Delta’s decision to host the NVIC video.

Let me put it simply: Delta should consider seriously whether they wish to promote an organization like the NVIC. Playing these advertisements was clearly a promotion of the organization, as spelled out in the letter In Flight Media sent.

“Censorship and attacks on consumer advocacy groups working to institute informed consent protections in public health policies should not be tolerated in this or any society that cherishes free speech and the right to self determination”

I find it hard to give Ms. Fisher the moral high ground on free speech issues after she sued Paul Offit (and lost), Wired Magazine and Conde Nast.

That said, why do I think that Delta should reconsider supporting NVIC? How about the NVIC press release?

The AAP letter stated that “influenza vaccine continues to be the best way to protect against the disease,” without acknowledging that a recently published scientific study found that the flu vaccine is less than 70 percent effective in preventing influenza, which confirms previous studies questioning influenza vaccine efficacy and effectiveness. A top flu expert at the CDC has said that about 80 percent of flu-like illness reported in the U.S. every year is not influenza but is caused by other viruses and bacteria.

First off, notice how NVIC glossed over the statement by the AAP that “influenza vaccine continues to be the best way to protect against the disease”? They don’t come out and say AAP is right or wrong. What they do is follow it with nonsequiturs which downplay the need for the vaccine.

It’s pretty slick. They get to give the impression that the AAP is incorrect about the statement, and retain deniability.

NVIC: how about a simple statement. Is the flu vaccine the best way to protect against the disease or not?

On with the paragraph. NVIC pose that the 70% efficacy of the flu vaccine as a bad thing that is being kept hidden. Hey, I’d like a flu vaccine that was more than 70% effective, but, 70% is well worth it. 70% less chance of being sick with the flu? 70% less chance of passing the flu on to someone who is vulnerable to injury or death from the illness? I’d say “sign me up” except that I already got my shot this year.

That said, can NVIC offer an alternative which is proven better than 70%? Can they provide a method which is better than the combination of taking care of one’s self, attention to hygiene, plus the vaccine?

The second sentence in that paragraph is also troubling. “A top flu expert at the CDC has said that about 80 percent of flu-like illness reported in the U.S. every year is not influenza but is caused by other viruses and bacteria.” So? The statement was “influenza vaccine continues to be the best way to protect against the disease”, not “influenza vaccine continues to be the best way to protect against the disease and every other disease which is similar.”

This is exactly the sort of message I disagree with NVIC about. Downplaying the need for vaccines. Does NVIC say, “80% of flu-like illnesses might be caused by other disease–so, we should be looking for vaccines to protect against those viruses and bacteria as well”? Or, “Influenza vaccines might be only 70% effective, so we want research into a more effective vaccine”? Hardly.

NVIC claims that the AAP is “accusing Delta of “putting children’s lives at risk” by showing travelers the NVIC sponsored video because it contains “harmful messages.”

See how they want to ignore anything outside of their video? Let’s take a look at the paragraph with the “putting children’s lives at risk” phrase:

By providing advertising space to an organization like the NVIC, which opposes the nation’s recommended childhood immunization schedule and promotes the unscientific practice of delaying or skipping vaccines altogether, you are putting the lives of children at risk, leaving them unprotected from vaccine-preventable diseases.

AAP are objecting to promotion of the NVIC in general, not just the video. I guess NVIC didn’t want to address the question of whether they promote delaying or skipping vaccines, and whether this is unscientific.

NVIC tries to frame itself as a “vaccine safety” organization, asking only for “safer vaccines”. As I pointed out in an earlier post, they never define “safe”. They don’t seem to have called any vaccine “safe”.

Frankly, this looks like an effort for NVIC to try to get more publicity. In doing so, they are probably guaranteeing that Delta will not accept their advertisements in the future (or they have given up on any future spots) .This is a public relations nightmare for Delta. Last thing they want is a public debate about how they are contributing to a group who is putting children’s lives at risk. And, let’s face it, the American Academy of Pediatrics is well respected.

I’ll close by responding to a statement in the press release: “NVIC is a non-profit charity led by educated health care consumers’

Left Brain/Right Brain is also a group of educated health care consumers. Educated enough to reject the NVIC’s message. The real message, not the one they hide behind. The message of a group that thinks that vaccines are a “holocaust of poison“.

Judge Rotenberg Center banned from shocking new admissions

14 Nov

The Judge Rotenberg Center (JRC) has is a special needs school in Massachusetts which employs electric shocks as part of its program on a subset of its students. This practice is controversial, to put it mildly.

With thanks to Kate Gladstone for bringing this to my attention, the JRC has been banned from including these aversives on future students.

The letter below is from the Autistic Self Advocacy Network (ASAN) Disability Rights International which goes into more detail.

JRC Banned from Shocking New Admissions

Dear Supporters,

This week we can celebrate a major victory against torture of people with disabilities in the United States. The Massachusetts Department of Developmental Services (DDS) adopted new regulations last week that greatly restrict the intentional use of pain as a form of treatment – including the use of electric shock, seclusion, and restraints on young children and adults with disabilities. As documented by a recent report by Disability Rights International (DRI), Torture Not Treatment, The Judge Rotenberg Center (JRC), based in Canton, Massachusetts, has used these practices, called “aversive treatment” for decades.

Facilities licensed by the DDS in Massachusetts can no longer subject new admissions to severe behavioral interventions including electric shock, long-term restraint, or aversives that pose risk for psychological harm — in other words, mainstays of JRC’s “treatment” program.US Report Cover

No other institution in the country – or the world, as far as we can tell – uses such barbaric practices. DRI’s investigation found that the pain caused by this is so severe and outside accepted professional norms, that these practices constitute nothing less than torture. By permitting such treatment, the United States violates its obligations under international law, as defined by the UN Convention Against Torture. DRI filed our report, Torture Not Treatment, in 2010 as an urgent appeal to the United Nations. The top official on torture at the United Nations agreed with DRI, and when asked by ABC Nightline if the practices were torture, he declared, “Yes…I have no doubts about it. It is inflicted in a situation where a victim is powerless…a child in the restraint chair, being then subjected to electric shocks, how more powerless can you be?”

We applaud Massachusetts Governor Deval Patrick on taking a courageous stand by issuing an executive order for the Massachusetts DDS to review their policies regarding electric shock and other severe aversives.

The resulting new policy puts an end to the use of JRC’s electric shocks on new admissions. But we can’t declare success yet. While hundreds of children will be spared from JRC’s behavioral experiments in the future, the new policies do not stop JRC from shocking and causing psychological damage to children already placed in the center. These children and young adults remain prisoners in a very dangerous environment. The center has been repeatedly investigated for suspicious deaths and physical abuse. JRC has been fined for identifying some clinicians hired by the school as psychologists, when in fact, they were not licensed psychologists. And as a result of an investigation into a case of abuse at the facility, JRC’s director was forced to resign earlier this year after being charged with misleading a grand jury about the investigation.

DRI is encouraged by the bold statement by the US National Council on Disabilities, a federal advisory body, which cited DRI’s report, as well as the international definition of torture, to call for the use of painful shock aversives to be brought to an end.

DRI urges the Department of Justice and the Obama Administration to fullfil its obgligations under the UN Convention Against Torture. DRI calls for a blanket ban on the use of electric shock as aversive treatment for children or adults with disabilities across the nation. There is nothing stopping JRC from shocking kids already in their center — or moving their facility to a different state to avoid the new Massachusetts regulations. The Department of Justice has an open investigation into the treatment of children at JRC. We ask you to write a personal appeal to the investigators to help ensure that this torture is put to an end once and for all, and is never allowed to be duplicated anywhere else in the United States.

We are one large step closer.

Thank you for your continued support,

Laurie Signature

Laurie Ahern,
President

Eric R Sig

Eric Rosenthal,
Executive Director

Letter to the Editor: A Former Judge Rotenberg Center Worker Speaks Out

14 Nov

The Canton Patch has published a letter to the editor from a former employee of the Judge Rotenberg Center. The letter is described, “Greg Miller worked for the Rotenberg Center in Canton for three years and speaks about his experience.” and carries the warning that “Some of the content in this letter may be disturbing. Reader discretion is advised. ”

Mr. Miller discusses his decision to work at JRC, why he stayed for some 3 years, and the effects it had upon him. But most of the letter is focused up the methods used at the JRC:

I believe that electric shocks are harmful not only to the student receiving a shock, but to all other students in the room witnessing the traumatic shock incidences. Electric shocks are not necessary to help JRC’s population of students. I saw much use of electric shocks that I felt were unwarranted to appear in student plans, and it seemed to me that individualized student plans were designed without proper oversight or adequate safeguards to prevent misuse of the shock devices.

Here are a few of his experiences which he reports:

I have participated as required in following student plans to shock multiple students, including when they reacted to watching a fellow classmate tied up in a restraint chair getting attacked by a staffer with a plastic knife (being held) to the student’s throat. This was a judge-approved Clockwork-Orange-type “treatment” for a student who swallowed a small X-Acto knife blade. A staffer, according to the plan, would run up to the student who had all four limbs tied all day long to a restraint chair, and pretend to force a plastic knife down the student’s mouth while another staff pressed the remote control to give a shock to the student. The staff would repeatedly yell in a gruff voice, “Do you want to swallow a knife?”

and

I have witnessed terrible injuries including bloody scabs all over the torso, arms, and legs caused by the electrodes. While I have heard of Dr. Israel previously claiming that the injuries were due to staff not properly rotating electrodes after shocking a student, the reality was that some students exhibited behaviors resulting in up to 30 shocks in a day. Some students stopped their behaviors after receiving their maximum 30 shocks for the day. Most of the shock devices used two electrodes to pass current through a specific distance of human flesh to maximize the amount of pain from the same amount of current. Two red skin marks from electrodes per shock, times 30 shocks in a day, quickly adds up so that very soon electrodes will be placed over previous marks resulting in bloody scabs. In these cases, the multiple patches of bloody scabs have nothing to do with staff failing to rotate electrodes after shocking students. Rather it exemplifies that the electric shocks approach were not appropriate for the student, and that other approaches should have been found.

Dr. Israel has previously compared the electric shock devices to bee stings. I vividly remember nearly getting the wind knocked out of me during training at JRC back in 2003 when (I was) permitted to test out the weakest of JRC’s electric shock devices on my own arm. That was no bee sting!

I would encourage readers to read the entire letter Mr. Miller wrote.

The lack of substance in Andrew Wakefield’s supporters’ arguments

11 Nov

Andrew Wakefield, the man who brought us the MMR scare, is back in the news. In a relatively small way. Earlier this year, Mr. Wakefield was in the news in a big way when the BMJ called him out for research fraud. At the time, Mr. Wakefield was enjoying the hospitality of wealthy patrons in a Jamaican resort, under the auspices of a “vaccine safety conference“. Also attending the conference were a team from the National Whistleblowers Center (aside, I am getting more and more leery of groups that put “national” into their name). Why is this important? Because instead of responding to the BMJ article directly, Mr. Wakefield provided material to one of members of the Whistleblowers Center so he could reply. The letter, by David Lewis, attempts to address one of the many issues involved with Mr. Wakefield’s research. It does not do this well, to be frank.

One problem with discussing Andrew Wakefield’s work is that there is just so much wrong that one can easily lose the forest for the trees. The big picture gets lost going over count after count of dishonesty and unethical behavior.

When analyzing Mr. Lewis’ argument, there are again many problems to discuss. Once again, it is easy to lose the story for the details. Allow me to address a few.

First, the argument is a classic strawman. Mr. Lewis posits that it is reasonable for Mr. Wakefield to have reported nonspecific colitis in his 1998 Lancet article, therefore no intentional misinterpretation was committed. To bolster this argument, he provided the BMJ with the original scoring sheets used by the pathologist who reported on the samples. Writes Mr. Lewis:

As a research microbiologist involved with the collection and examination of colonic biopsy samples, I do not believe that Dr. Wakefield intentionally misinterpreted the grading sheets as evidence of “non-specific colitis.” Dhillon indicated “non-specific” in a box associated, in some cases, with other forms of colitis. In addition, if Anthony’s grading sheets are similar to ones he completed for the Lancet article, they suggest that he diagnosed “colitis” in a number of the children.

As though, even if accurate, this would exonerate Mr. Wakefield. As the BMJ point out, in not one, but two pieces by specialists (gastroenterologist and pathologist), these grading sheets do not support the claims made in the 1998 Lancet article.

If you don’t have time to read those short articles, here’s the title of one: “We came to an overwhelming and uniform opinion that these reports do not show colitis”. Pretty clear.

And, yet, one can already see the battle lines being drawn and the talking points distributed. Before, people ignored the facts and instead tried to frame this as a personal battle: “Brian Deer, journalist, vs. Andrew Wakefield, Doctor.” Just a quick tweak and we have “David Lewis, expert who knows colonic biopsy analysis vs. Brian Deer, mere journalist.” This is, of course, more convincing that “Opinion of soil scientist vs. a pathologist and a gastroenterologist.” And, of course, easier than tackling the facts.

Let’s consider some facts, then. The first sentence of the (now retracted) 1998 Lancet paper: “We investigated a consecutive series of children with chronic enterocolitis and regressive developmental disorder. ”

“Consecutive series” was, at best, misleading given the facts of how the children were referred to the Royal Free. A fact not addressed in any way by Mr. Lewis.

“Chronic enterocolitis”. Note, “enterocolitis”. Not “non-specific colitis”. Let’s break this down. “-itis” means inflammation. Colitis “refers to an inflammation of the colon and is often used to describe an inflammation of the large intestine (colon, caecum and rectum).”

All fine so far. But, “enterocolitis“? The word actually used in the first sentence of the Lancet? The word used in the condition Mr. Wakefield coined for the condition he proposed, “autistic enterocolitis“? Enterocolitis is “an inflammation of the colon and small intestine.” And small intestine.

You can check the scores on grading sheets in the table Mr. Deer provided on his website. These include links to the scanned sheets themselves. For example, the sheets for Child 1.

The sheets and the table are arranged in a specific order: top down. From the highest point reached in the colonoscopy on down to the rectum (the exit of the large intestine).

Why point this out? Because you will notice from the table that for two of the eleven children reported (child one and twelve), there are no data for the duodenum (start of the small intestine) or the ileum (as noted in the Lancet article). Those reports start at the Caecum (the start of the large intestine) or lower. For some of the other children (child four, seven and nine), there are data, and they are listed as “normal”. The Lancet reports them as having lymphoid nodular hyperplasia. Child two has some notation, but again is checked “normal” by Dr. Dhillon. Likewise child 5 and child 6.

Which begs the question: how can you diagnose “enterocolitis”, inflammation of the large and small intestine, without data from the small intestine, or when the data you do have is normal? For 8 out of the 11 children, by my count.

Answer: you can’t. Hence the switch from “enterocolitis” to “non-specific colitis” in Mr. Lewis’ letter to the BMJ. In that letter, the term “enterocolitis” only appears in his citation of a Brian Deer article.

So, back to the first sentence of the Lancet article and ask, what is accurate? Let’s include the points made by Mr. Deer that not all these children demonstrated regression, and there wasn’t a single developmental disorder. So, with thanks to a reader who pointed this out: “We investigated a consecutive series of children with chronic enterocolitis and regressive developmental disorder(s).

or,

“We investigated children with developmental disorder(s)”

Not really very exciting.

While I have fallen into the trap I described at the outset, losing the forest for the trees, allow me to discuss one last piece of the way people are attempting to frame the way Mr. Wakefield wrote his paper. Instead of being an active researcher, it seems he is considered to be merely the man who collected the data and typed the manuscript. Mr. Lewis wrote, “I do not believe that Dr. Wakefield intentionally misinterpreted the grading sheets as evidence of “non-specific colitis.” ”

As though the entire process of diagnosing children with enterocolitis involved looking at Mr. Dhillon’s grading sheets. Once again, what did the Lancet article say? Under “Histology”:

Formalin-fixed biopsy samples of ileum and colon were assessed and reported by a pathologist (SED). Five ileocolonic biopsy series from age-matched and site-matched controls whose reports showed histologically normal mucosa were obtained for comparison. All tissues were assessed by three other clinical and experimental pathologists (APD, AA, AJW).

AJW refers to Andrew J. Wakefield. So, did he just accept the diagnoses from others, as we are being asked to believe now, or did he assess tissues, as he wrote in the Lancet in 1998? Seems an important point to downplay, as Mr. Lewis is not attempting.

To bring this to a close, a press release has been issued in support of Andrew Wakefield. Mr. Lewis is quoted:

“There was no fraud committed by Dr. Wakefield. The crux of the matter in Wakefield’s case, so far as research fraud is concerned, is whether Wakefield fabricated the diagnosis of non-specific colitis for 11 of the 12 Lancet children as claimed in Table 1. Drs. Paul Dhillon’s and Andrew Anthony’s grading sheets clearly show that Wakefield did not fabricate the diagnoses of non-specific colitis reported in the Lancet article.”

Well, no. Nonspecific colitis is not the “crux of the matter” at all. Mr. Lewis is referred to Mr. Deer’s article, and the discussion of regressive autism and when symptoms appeared. Facts which were not reported accurately in the Lancet.

And there’s that whole first sentence not being accurate at all thing…let’s not even get started on the concluding sentence:

We have identified a chronic enterocolitis in children that may be related to neuropsychiatric dysfunction. In most cases, onset of symptoms was after measles, mumps, and rubella immunisation. Further investigations are needed to examine this syndrome and its possible relation to this vaccine.

Brian Deer on Andrew Wakefield: Pathology reports solve “new bowel disease” riddle

10 Nov

Today the British Medical Journal (BMJ) released a four articles on Andrew Wakefield and his research efforts at the Royal Free Hospital. To sum up the four articles in a single sentence (from Fiona Godlee of the BMJ): “Previously unpublished histopathology grading sheets apparently completed by Amar Dhillon, the senior pathologist on the paper, remove any remaining credibility from the claim that the Royal Free doctors had discovered a new inflammatory bowel disease associated with MMR”

For those who may wish a bit of background, earlier this year, the BMJ had a series of articles on Mr. Wakefield’s research:

Secrets of the MMR scare: how the case against the MMR vaccine was fixed (Feature by Brian Deer)

Secrets of the MMR scare How the vaccine crisis was meant to make money (Feature by Brian Deer)

The Lancet’s two days to bury bad news (Feature by Brian Deer)

and

Wakefield’s article linking MMR vaccine and autism was fraudulent (editorial by Fiona Godlee of the BMJ)

These articles came after Mr. Deer was able to review the transcripts of Mr. Wakefield’s “Fitness to Practice” hearings held before the General Medical Council (GMC).

Mr. Wakefield’s work focused on gastrointestinal disease. He went so far as to claim to have found a new syndrome, which he coined autistic enterocolitis. 13 years later, there is still no proof such a condition actually exists. When evidence came forward that the discussion of the children in the Lancet did not match the clinical records, Mr. Wakefield claimed that ““Dr Dhillon’s diagnosis formed the basis for what was reported in the Lancet,” and “I played no part in the diagnostic process at all.” Unfortunately it has been difficult to verify these statements. For one, the slides made from the samples taken from the children in the Lancet study are apparently missing, so direct comparison of what was reported in the paper to what was actually found in the children was difficult. Also, Dr. Dhillon’s analyses were not available. Until now. The scoresheets used by Amar Dhillon, the pathologist coauthor on the 1998 Lancet article, were recently made available to the BMJ. These form the basis for the articles published today.

In his new BMJ article, Pathology reports solve “new bowel disease” riddle, Mr. Deer discusses the pathology reports. He compiled a table based on these reports (for example, the report from Child 1). If I can summarize Mr. Deer’s discussion: what is striking about these reports is that they are not striking. Dr. Dhillon used his own score method to rank the disease found in the specimens. In most cases, these were “normal” or “mild”.

Mr. Deer shared the reports with a number of professionals for comment. Including Dr. Henry Appleman:

“Most of this stuff is so close to normal that you’ve really got to question whether there is really anything there,” said Henry Appelman, professor of surgical pathology at the University of Michigan and a specialist in gastrointestinal disease. “These are the kind of things that we in our practise here would ignore completely.”

And Ingvar Bjarnason:

“Everyone thinks I am crazy even asking them,” said King’s gastroenterologist Bjarnason, after discussing the scorings with other specialists. “All but one of the children is normal in their eyes. There is no enteritis and no colitis, simple as that.”

While the reports were not striking, there is indication of inflammation. Mr. Deer argues that a key point was left out of the Lancet article, the presence of constipation in many of the children, which would have put the inflammation signs into better perspective for the readers:

No less controversial, the authors omitted from the paper the children’s principal gastroenterological problem. “Almost all” had “severe” constipation.(30) The GMC panel heard, for example, that after bowel preparation by nasogastric tube, the first patient, who had mild caecal cryptitis, endured two attempted ileocolonoscopies that failed because of faeces in the caecum, with “scope trauma” noted on the second.

This omission of constipation was no small matter. It went to the heart of how the paper would be read. Specialists told me that both mild inflammation and prominent lymphoid follicles may be expected to be associated with this sign.

(30) Murch S, Thomson M, Walker-Smith JA. Authors’ reply. Lancet 1998;351:908.

Mr. Deer, of course, is not a medical professional. But, we do not have to rely solely on Mr. Deer’s report. The BMJ has two companion pieces by medical professionals.

In Commentary: I see no convincing evidence of “enterocolitis,” “colitis,” or a “unique disease process”, Karel Geboes, Professor Doctor, Department of Pathology Univ Hospital KUleuven reports:

In general, the data are rather similar to the reports of the Royal Free hospital pathology service, which I reviewed for the BMJ last year.(7) Although minor abnormalities are noted in a minority of patients, I see no convincing evidence of “enterocolitis,” “colitis,” or a “unique disease process” being present in all patients. The Wakefield et al paper is obviously problematic and its wording does not reflect the data shown in the grading sheets.

(7) Deer B. Wakefield’s “autistic enterocolitis” under the microscope. BMJ 2010;340:c1127.

In Commentary: We came to an overwhelming and uniform opinion that these reports do not show colitis, Dr. Ingvar Bjarnason, professor of digestive diseases, consultant physician and gastroenterologist at King’s College, London, writes:

The hospital pathology service found the histopathology to be normal,(3) and, except in the case of the child mentioned above, the grading sheets also note normal findings. The fact that these scores were interpreted as abnormal raises, in my opinion, questions for the authors of Wakefield et al to answer, and particularly for the consultant histopathologists.

From the histological and endoscopic reports, there are no grounds to believe that any new inflammatory bowel disease may have been discovered, or any possible “unique disease process” observed, as reported by Wakefield et al. Nothing can be said about the aetiology of any minor irritations noted, and nothing can be inferred regarding treatment.

(3) Deer B. Wakefield’s “autistic enterocolitis” under the microscope. BMJ 2010;340:c1127.

In Institutional research misconduct, Failings over the MMR scare may need parliamentary inquiry, BMJ editor Fiona Godlee discusses how there is no sign that the Royal Free Hospital (University College London) has begun the expected inquiry into the misconduct which occurred there in the 1990’s:

It is now more than 18 months since the UK’s General Medical Council found Andrew Wakefield guilty of dishonesty and other serious professional misconduct(1) ; and it is nearly a year since the BMJ concluded that his now retracted Lancet paper linking the measles, mumps, and rubella (MMR) vaccine with autism and bowel disease was an “elaborate fraud.”(2) (3) At that time, January 2011, we called on Wakefield’s former employer, University College London (UCL), to establish an inquiry into the scandal. Ten months on, no inquiry has been announced.

Ironically, these data were made available to the BMJ with the intent of exhonerating Mr. Wakefield.

In 1997, Dhillon was asked to reassess intestinal biopsy specimens taken from children enrolled in Wakefield’s research after the hospital’s histopathology service, under consultant and fellow coauthor Susan Davies, reported most of the children’s biopsies to be normal. His 62 A4 grading sheets were sent to the BMJ by c, a self employed environmental microbiologist. Lewis says he was given them by Wakefield after they met at a vaccine safety conference in January. In his accompanying letter, Lewis concludes that a non-expert pathologist such as Wakefield could have thought they showed that the children had non-specific colitis.

Ms. Godlee is being kind, in my opinion, using the title the self-styled “vaccine safety” conference chose. This was the same conference in Jamaica which was discussed here at Left Brain/Right Brain recently.

It strikes me as rather odd that Mr. Wakefield did not provide these documents to the BMJ directly. Perhaps in a response to the articles published earlier this year. What advantage he gained in providing them through a proxy is unclear.

When he was found guilty of misconduct by the GMC, Mr. Wakefield vowed that he would not go away. So far, this appears true. However, his arguments are getting weaker as time goes on. In this case, they seem to have outright backfired. Writes Ms. Godlee:

The grading sheets are certainly interesting, but not for the reasons Lewis (or, it may be assumed, Wakefield, in giving them to him) intended. We sent them to two independent reviewers and supplied the data for comment to two further senior gastroenterologists. We also showed them to Brian Deer, the investigative journalist who over the past eight years has uncovered the secrets behind the MMR scare and who arguably knows more about this case than anyone apart from Wakefield. Our expert reviewers are in no doubt that Dhillon’s findings—like Davies’s before him—are almost all normal, or as near to normal that the changes they reported were likely to be physiological.(6) (7) In an accompanying feature article, Deer explains what they add to our knowledge of the Wakefield saga.(8)

(6) Geboes K. Commentary: I see no convincing evidence of “enterocolitis,” “colitis,” or a “unique disease process.” BMJ 2011;343:d6985.
(7) Bjarnason I. Commentary: We came to an overwhelming and uniform opinion that these reports do not show colitis. BMJ 2011;343:d6979.
(8) Deer B. Pathology reports solve “new bowel disease” riddle. BMJ 2011;343:d6823.

Steve Jobs

17 Oct

With the passing of Apple Computer founder Steve Jobs, there have been numerous stories and blog posts. The iPad and iPod touch are very popular amongst a segment of the online autism communities, leading to a number of stories and articles from this community.

I’ve put off writing about Mr. Jobs’ passing for a number of reasons. Not the least of which is that my take on his passing is not really autism related. So, consider that before going on reading this.

Another reason I’ve put off writing is that I have a different take on things. I’ve read a number of stories about Mr. Jobs and how he invented the iPod and the iPad and many other things. Every time I read those I think there’s probably some guy at Apple thinking, “I remember suggesting in a meeting that we make an MP3 player” or “I remember telling people, the iPod touch is basically a tiny tablet. What if we made it bigger?”

This isn’t to take anything away from Steve Jobs. He was a remarkable man, with many technical accomplishments to his own credit. In my mind, Mr. Jobs was one of those rare people who could grow from being technical to being outstanding on the business side. (even more rare is the person who goes from business focus to technical. So rare that I can’t think of one. I could point out a few failures…)

Whatever Mr. Jobs’ role was in inventing the iPod and the iPad, he had the courage and insight to take Apple into what was basically a failing market. The MP3 player wasn’t a promising market (just check how well Microsoft did in that space). Same goes for the tablet computer (again, take a look at Microsoft based tablets). Phones? Apple didn’t invent the cell phone. It’s another tough market (think Nokia, Motorola, Palm, Blackberry). Really, Mr. Jobs led his company into many areas that were becoming commodity markets and made his products stand out.

But creating these businesses, these opportunities for Apple isn’t what stands out in my mind. What stands out is that Steve Jobs made technology cool. He made computers cool. He made MP3 players cool. Much more than this, he made being a technologist cool. I may feel that it’s a tough sell to claim that Steve Jobs “invented” everything Apple put out, but I won’t deny he is given credit for them. He’s got a bit of the Tony Stark penache as he announced new products. It isn’t just the look. The trademark turtleneck. Believe me, I worked for IBM during the Paul Horn (VP of Research) in black-T-shirts and pony tail era. There was more to Steve Jobs than just the image. He was the cool technologist. I wish his family well.

Sacramento County Schools “See” The Invisible Epidemic

5 Sep

At the end of this past week, California’s Sacramento Bee reports that “Autism rates quadruple in local schools over last decade“. The article, written by Phillip Reese, seems largely unremarkable. Even though headline is suggestive, there are no claims of “autism epidemic” that follow. In fact, Reese points out that:

Whether autism is actually more prevalent — as opposed to just more frequently diagnosed — is a matter of controversy.

From a scientific perspective, Reese definitely could have dug a lot deeper, but to a casual reader, the relevant facts seem pretty accurate, and a clear chart is provided.

The problem with an article like this, is that to a casual reader it may appear that there doesn’t seem to be any explanation in sight. “Autism is on the increase in Sacramento County Schools for the past decade”, and that’s that – “Why” is some sort of “controversy”, “some districts have more autistic students than others”, “here’s a chart”, and the article ends.

Did the Sacramento Bee miss an opportunity to carry their headline further, and expose an acutal “autism epidemic” in northern California schools?

Not surprisingly, Age Of Autism (always on the lookout for support of the notion that there’s been an autism “epidemic”) thought so. As it turns out, AoA resisted the urge to dig much deeper too. They were apparently satisfied to present a simple retort to the indication that whether or autism is actually more prevalent or more frequently diagnosed is “controversial”.

Seems the SacBee hasn’t read the study from their own state U that said, A study by researchers at the UC Davis M.I.N.D. Institute has found that the seven- to eight-fold increase in the number children born in California with autism since 1990 cannot be explained by either changes in how the condition is diagnosed or counted – and the trend shows no sign of abating.

Emphasis AoA’s.

If you think the emapahsized quote above sounds more like a press release than an acutal study, you’d be correct. Does the quoted press release overstate the actual conclusions of the study?

I’ll let readers be the judge of that, here’s the actual study’s conclusion:

Autism incidence in California shows no sign yet of plateauing. Younger ages at diagnosis, differential migration, changesin diagnostic criteria, and inclusion of milder cases do not fully explain the observed increases. Other artifacts have yet to be quantified, and as a result, the extent to which the continued rise represents a true increase in the occurrence of autism remains unclear.

Emphasis mine.

As foreshadowed for us in the conclusion of the actual study, what other artifacts might there be, that have “yet to be quantified”? Big ones like changes in awareness or diagnostic substitution?

Let’s quantify one of those potential artifacts (diagnostic substitution) for the Sacramento County Schools data, shall we?

Here’s the data (available online to the public):

To sum things up, I think Reese’s article/blurb would have been more interesting, only requiring a few extra minutes (the data is already there, presented on the same page when looking up the autism numbers), if it had included information about other changes like the “more than offsetting decrease” of Specific Learning Disabilities over the same time period.

Tell us what you think? Could newspapers do better when reporting on autism data, or do they simply present what their readers are really looking for?

Additional reading on this subject:

California’s Invisible Autism Epidemic (Jan 2009)

California’s Invisible Autism Epidemic Continues (Feb 2010)

California’s Specific Learning Disabilities Counter Epidemic (Feb 2011)

Lessons from the MMR scare by Fiona Godlee

2 Sep

Fiona Godlee, editor of the British Medical Journal, will address the National Institutes of Health (NIH) on Tuesday, Sept. 6th. Her talk, Lessons from the MMR scare, will take place at 11am eastern time, and is scheduled for 90 minutes.

It will also be videocast.

Please join BMJ Editor Fiona Godlee for a discussion of the stunning investigation she published earlier this year that revealed the MMR scare was based not on bad science but on deliberate fraud. The three-part series was produced by journalist Brian Deer, who spent seven years investigating Andrew Wakefield’s infamous study linking the MMR vaccine with autism, discovering Wakefield had been paid by a lawyer to influence his results and had blatantly manipulated the study data.

In an editorial accompanying Deer’s report, Godlee and colleagues noted, “Science is based on trust. Without trust, research cannot function and evidence based medicine becomes a folly. Journal editors, peer reviewers, readers, and critics have all based their responses to Wakefield’s small case series on the assumption that the facts had at least been honestly documented. Such a breach of trust is deeply shocking. And even though almost certainly rare on this scale, it raises important questions about how this could happen, what could have been done to uncover it earlier, what further inquiry is now needed, and what can be done to prevent something like this happening again.”

For more information, read the BMJ articles:

The fraud behind the MMR scare, Fiona Godlee, et al
Wakefield’s article linking MMR vaccine and autism was fraudulent
Institutional and editorial misconduct in the MMR scare

Secrets of the MMR scare: Brian Deer

Part 1: How the case against the MMR vaccine was fixed
Part 2: How the vaccine crisis was meant to make money
Part 3: The Lancet’s two days to bury bad news

The NIH website gives a brief biographical blurb on Ms. Godlee:

About Fiona Godlee

Fiona Godlee has been Editor in Chief of the BMJ since 2005. She qualified as a doctor in 1985, trained as a general physician in Cambridge and London, and is a Fellow of the Royal College of Physicians. Since joining the BMJ in 1990 she has written on a broad range of issues, including the impact of environmental degradation on health, the future of the World Health Organisation, the ethics of academic publication, and the problems of editorial peer review. In 1994 she spent a year at Harvard University as a Harkness Fellow evaluating efforts to bridge the gap between medical research and practice. On returning to the UK, she led the development of BMJ Clinical Evidence, which evaluates the best available evidence on the benefits and harms of treatments and is now provided worldwide to over a million clinicians in 9 languages. In 2000 she moved to Current Science Group to establish the open access online publisher BioMed Central as Editorial Director for Medicine. In 2003 she returned to the BMJ Group to head up its new Knowledge division. She has served as President of the World Association of Medical Editors (WAME) and Chair of the Committee on Publication Ethics (COPE) and is co-editor of Peer Review in Health Sciences. She lives in Cambridge with her husband and two children.

hat tip to a commenter at Respectful Insolence for this information.

Five years ago…

1 Sep

Left Brain/Right Brain has been around since 2003. Yesterday I thought to myself: I wonder what a look back would tell us. Say, 5 years? To summarize: it tells us that things move slowly.

Some of the faces have changed over the years. For example: I wasn’t writing then but Autism Diva was. Some regular commenters have moved on. Some new ones have joined. David Kirby (author of Evidence of Harm), Rick Rollens (California Lobbyist) and others were frequently in the news and now they are rarely heard from.

But, in the end, many things stay the same:

In Autism Diva: Kelloggs Just Trying To Help , Kev pointed to a post by Autism Diva who was discussing an awareness program by Autism Speaks where AS was getting their name on cereal boxes.

I seem to recall being critical of Autism Speaks just recently…

In Dr David Ayoub – Hidden Agenda and Stone Cold Certainty we see Dr. Ayoub, a vocal proponent of the idea that vaccines cause autism. This was about the time when people were discovering that Dr. Ayoub had some interesting beliefs. He was posing “difficult questions” like “2) Is there evidence that vaccines can deliver antifertility products? Have they been used?” and “3) Does thimerosal fulfill criteria as an antipopulation agent?”. This as well as some other odd ideas, as discussed in David Ayoub, Black Helicopters and Social Movement.

Years later, even after this, Dr. Ayoub still pops up from time to time (for example, on mercola.com last year).

In, “Its The Mercury, Stupid! No Wait!“, Kev was discussing people were predicting a drop in the autism counts which were then published quarterly by the California Department of Developmental Services (CDDS).

He quoted David Kirby:

[Kirby] “Stay tuned. If the numbers in California and elsewhere continue to drop – and that still is a big if—the implication of thimerosal in the autism epidemic will be practically undeniable.”

So, now that we know that they never dropped is the opposite ‘practically undeniable’?

Let’s not forget what David Kirby told Citizen Cain:

“if the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis”

The drop didn’t happen. The goalposts moved. The mercury idea lost some momentum but, unfortunately, still lives on despite evidence.

In “A Blogging Catch Up” Kev discusses the “Rain Mouse” study (a study claiming autistic behaviors in mice injected with thimerosal. The MIND Institute tried to replicate the study later and found they could not, even with much higher doses of thimerosal). Also in the “catch-up” was the revelation by Kathleen Seidel of some of the misdeeds of the Geier’s. This included the fact that they had failed to obtain appropriate IRB approval for one of their studies. 5 years later and they are just now facing some disciplinary action for the way they’ve conducted their business.

Like I said. Some things move slowly. Sure, the “autism is nothing but a misdiagnosis for mercury poisoning” idea has mostly (mostly) gone by the wayside. I often read people writing, “Is this the end of autism/vaccine idea?”. The idea has certainly lost momentum. I doubt it will die in my lifetime.

Thankfully, it wasn’t all vaccines (then or now). In Calling all autistic college students, Kev set out to help an organization trying to gather information about autistics in college.

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