Notes from Andrew Wakefield's talk at Brandeis

This is a guest post by John Santos, who was able to attend Andrew Wakefield's recent talk at Brandeis University. The talk was also covered by the Brandeis Hoot (with an additional editorial) and the Boston Globe.

On April 13, 2011, I attended a talk by Andrew Wakefield at Brandeis University. The talk was sponsored by a student organization Spectrum, which is concerned with autism. The student who hosted the talk was Jake Crosby, who blogs at Age of Autism. I estimate there were about 75-100 people present.

Wakefield spoke for about 2 hours, followed by about 15 minutes of Q&A. I took notes, though it was hard to keep up and there may be many gaps here. Despite that, I hope it will be useful, especially as preparation for anyone attending one of his lectures in the future.

The talk was recorded (I saw at least one person with a video camera), and Crosby said it would be available on the web, at the AoA site, I think.

The talk raised many questions in my mind, some of which I've had a chance to do some research on. I'm at least passably familiar with the vaccine controversy, but many of the references went by too fast for me to fully understand. I imagine to someone with no background at all, it would have completely snowed them. I agree with what Steven Novella has pointed out many time, if you are going to debate with a pseudoscientist, you really need to be on top of your game. I didn't feel capable of doing this, so I didn't ask any questions.

Fraud

The first section of the talk was entitled "Fraud." It wasn't a confession. He said Brian Deer accused him of manually altering the records.

He said Deer met with Child 2's mother, using a false name.

Wakefield asked (rhetorically) "What is the factual basis of the paper?" He says he did not have access to the GP records when he wrote the paper. It was based on the reports he received with the referrals and from the parents. (I assume this is in reference to the contradictory medical histories.) He said he only saw the original GP records when he was preparing for the lawsuit.

Another thing he claims Deer was wrong about is that Deer claimed child 3 had exhibited hearing problems of the sort indicating a neurological auditory processing problem typical of autism several months before receiving the MMR, but in fact child 3 just had an ear infection accompanied by discharge at that time.

He also said child 2 started head-banging 2 weeks after MMR, not months later.

Wakefield said the routine pathology reports of the children (in some, many or all cases?) did not show inflammation, but Dr. Walker-Smith had Dr. Dillon review them (in a blinded fashion) and Dillon found severe inflammation in all of them. He disparaged the routine pathology as being done by random pathologists with other specialties who were assigned on a rotating basis. They would do very many samples of all tissue types for a few days, then go back to their own specialty. The implication was that they couldn't be trusted. Dillon was a specialist in bowel pathology.

He claimed the colonoscopies were all done as done as part of their treatment and not especially for his study. At least, I think that was what he was claiming, it was pretty confusing.

He says Deer withheld papers showing Walker-Smith had approval to do the colonoscopies, that these papers didn't come out until the GMC hearings, and were summarily dismissed by the GMC board and ignored. (He didn't explain why he had to get copies of the permission forms from Deer and not directly from Walker-Smith or the hospital. Somehow it is Deer's fault he didn't have these before the hearing.)

He then put up a slide showing a bunch of context-free quotes where Deer appeared to be insulting the parents of the autistic children. A pure ad hominem attack.

He summed up by saying the GMC didn't do due diligence.

The bottom line was that Deer was the one committing fraud, not him.

History of Medical Theories About Autism

I didn't notice if he had a slide giving a title to this section, but at this point he shifted gears and started talking about how the medical establishment had trivialized and ignored autism over the years. I think the point of this was to lay groundwork for his summation later where he denounced most doctors for ignoring the parents and praised the "Mommy Instinct". This probably plays really big to the Jenny McCarthy set.

He put up a slide showing a long list of hypotheses and claims about autism that he then crossed out one at a time. I didn't get the complete list but it contained things like refrigerator mothers, genetics, diet, etc. The one he was finally left with was "toxins" (by which he obviously meant "stuff in vaccines", not air or water pollution or lead paint, etc.)

He talked about the "refrigerator mother" idea as an example of "blame the patient" when medicine doesn't know the answer. He also said that "autism is genetic" is another example of blaming the parents. Huh? The parents are responsible for their genes? Is he a Lamarckian?

He then asserted that autism is caused by toxins. (Or at least toxins are responsible for the recent great increase in autism incidence.) As proof of this he said regression is now much more common than it used to be. That's what my notes say, but as I remember it, I think he meant that regression of symptoms is more common, meaning lots more children improve over time. I think that he was implying that better care and treatment (maybe detox, but I don't think he actually mentioned this or discussed any details of autism treatment at all) was having a positive effect on long-term prospects for the kids. But isn't this perfectly consistent with early, aggressive diagnosis of kids who in the old days would have just been regarded as slow, kids who may never have caught up with the other kids but were never diagnosed as having any specific deficit? But he might have meant "regressive autism" has become more common. This is where the children appear to be developing normally and then regress, losing skills they had previously acquired.

He summed up by claiming medicine blames the patient when it has no understanding. He was clearly trying to get sympathy from the audience.

He followed with some anecdotes about diet.

Autism and IBD

At this point he has selected a bunch of children with both autism and IBD (inflammatory bowel disease) and then says since the children have both, it is the same disease. Sounds like a pure selection effect to me. My questions are 1) how many autistic children don't have IBD and vice versa, and 2) What does any of this have to do with vaccines?

As to whether this is actually the cause of autism, he said "We can't say", then proceeded to talk as though it was unquestioned science.

He said 45-80% of (some set of) autism patients have IBD, but I couldn't understand what the selection or diagnostic criteria were. It might have been of all children, or maybe it was just of those referred to his specialized program (i.e. autistic children who had already been treated by a doctor who decided they needed care beyond what a GP or pediatrician could provide). He threw out a bunch of numbers at this time, but too quickly for me to note down their significance.

He quickly flashed up a slide listing replication in 5 countries. The list was gone too quickly for me to write down, but it was himself, Gonzalez, Balzola and 2 others. I'm pretty sure he counted himself as a replicator.

He says you may ask how can gut diseases cause neurological symptoms. He cited alcohol as proof of a connection between the gut and the brain. D'oh. He then said many gut diseases cause neurological symptoms, including celiac disease and jaundice.

Vaccines

While parents' instincts tell them there is something wrong with their kid, the doctors just send them away. This section seemed very conspiracy-theory laden.

2 out of 3 brands of MMR in the UK were withdrawn because they caused meningitis. He says the Brits then sold the withdrawn MMR to Brazil where it caused a meningitis epidemic.

He stated coincidence can only be claimed as an explanation after all other causes have been eliminated. (Seems to ignore the existence of epidemiology and statistics and selection biases.)

Talked about multiple vaxes and cited Cathy DeSoto (UNI)'s meta analysis of vaccine studies which he says pointed at HepB.

He then made a big deal of a Yokohama study which showed rising autism rates until MMR was dropped, at which point autism rates also declined for a few years until they started doing measles and mumps (separate shots) on the same day, at which time the autism rates jumped right back up. I was suspicious of this because he made it sound as if this was a large, country-wide study and he had chosen Yokohama as an illustration, but was he actually cherry-picking the only city that showed this pattern?

He showed a graph which supposedly showed this effect, but the lines were invisible, apparently because there was too much light in the room and the contrast was insufficient. He was mortified and very apologetic. I think this was his killer graph and it failed!

Claimed delaying DPT greatly reduced asthma.

Wakefield cited DeStefano that earlier MMR was linked to higher autism rates. (On second reading, this statement is ambiguous. It was clear to me from context "earlier" meant the age of the child, not earlier versions of the MMR vaccine.) Google reveals the existence of two Dr. DeStefanos who have done work on vaccines. Frank is an epidemiologist with the National Immunization Program at the CDC who did an early study refuting the original Wakefield Lancet paper. Joseph L. has a web site with what appears to be standard medical advice about vaccines, among other subjects. I assume Wakefield was referring to Frank DeStefano.

Lots of weasel words about thimerosal, aluminum and adjuvants but nothing about doses or comparisons to other sources of these substances. No mention that thimerosal was removed from childhood vaxes almost a decade ago with no reduction in autism rates.

Then he displayed some scary-looking graphs of delayed development of essential skills in infant monkeys at U of P(ittsburgh?) I think these were the infamous Hewitson monkey trials.

If so, he made no mention of the sample size (e.g. N=2 in the control group.) Also, as I understand it, they looked at 13 different reflexes and behaviors, and only published the 3 that showed a delay. Were the other 10 identical or did some of them show an improvement with vaccination? In other words, is there anything more here than cherry-picking from high-noise data sets?

He described the WHO pre-clinical primate test required for all vaccines, and made it sound really dicey. For example, small numbers of subjects, which seems to be objectionable here but not in studies that support him; if a monkey dies within a short time, you get to replace it, etc. He made it sound like this was the only test you needed to do before trying it in humans, and didn't actually describe the purpose of the test nor explain what "pre-clinical" meant. I need to go back and look this up and see if this is all scare-mongering, but that's the way it felt, more from what he didn't say than from what he did.

He talked a bit about the Somalis - claims the Minneapolis autism cluster must be environmental. Possibly vitamin deficiency from northern climate, or something, because

There is no autism in Somalia.

Whoa! None at all? Amazing! Or maybe there are no autism diagnoses because there is no functioning medical system? I almost screamed at this point.

He blames Micheal Rutter, I'm not sure exactly for what.

He then cited 3 cases where US courts had ruled that vaccines had caused autism. They weren't up on the slide long enough for me write them down, but one of them was Hannah Poling. I think half the room heard me say "Hannah Poling doesn't have autism!" pretty loudly. I was trying to keep a low profile, but this was too much.

Summation

It was all a conspiracy to get him. He's lost his job, his career and his country. As far as any discrepancies between his paper and the medical records "I didn't know!" I was almost certain he was going to invoke Galileo at this point, but he didn't. He blamed the media and Big Pharma.

He then argued from popularity. Parents know that all these shots can't be good for their kids, so it must be true.

During his summation, Wakefield said that it was the parents' insistence that their autistic kids had digestive problems that their doctors were ignoring (would any GP actually ignore the condition of a child who had persistent diarrhea 12
times a day, as Wakefield claimed?) who brought their kids to him in the first place, and that their parental instinct had been right. He claimed that their instincts were also correct that vaccines were causing the autism, and that the "Mommy Instinct" (he actually used this term) was one of the most powerful and accurate forces in nature, honed over millions of years of evolution, and totally trumped mere things like "evidence" and "science" and "medical experience." (Scare quotes mine, not his.) If the talk does go up on-line, and you can't bear to listen to the whole thing, FF to the end (just before the questions) and watch this part.

Q and A

Q1: Boys are at more risk. Doesn't this point to a genetic explanation?

A1: Lots of speculation. Might be an X-chromosome linked predisposition. Then he went off on thimerosal again.

He invited someone named Dick in the audience to come to the audience mike. Dick said there might be an antioxidant (I think he said glutathione) deficiency involved. 1) The pathway involved is stronger in females and 2) selenium is involved; selenium is used mostly by the brain and testes, so if there is a (selenium and/or glutathione) deficiency in boys, their brains will be more affected.

Q2: (Daedalus2u's question) Wakefield's graduate student, Nicholas Chadwick, found no measles virus or products in any of the 12 samples, using an extremely sensitive technique.

A2: Lancet paper is not about measles. Some squabbling to establish that it was in the second paper that the measles connection was established, and that O'Leary found the measles was present. (O'Leary was an author on the 2nd paper but not the 1st.) Daedalus summarized his answer at Respectful Insolence comment #113 as

he reported the positive results from the labs that got positive results.

As ArtK pointed out in Comment #120,

To anyone but the faithful he just said "Yes, I did commit fraud."

Q3: Weren't patients referred by a lawyer seeking to sue and wasn't he paid $400K? (I think it was 400K pounds, not dollars.)

A3: Denies a lawyer referral, claims he didn't even know there were any lawyers involved until many months after he saw the first patient. He said many of the parents knew each other and obviously were comparing notes and experiences and probably met the lawyers that way. He said he was paid at the standard rate as a medical expert, and earned his pay (over 9 years) with a lot of hard work, and he made no money for himself, he donated it all to the Royal Free Hospital for a new treatment center (to study his field, pediatric bowel disorders, I think), which was unfortunately never built. He claims his conflict was never secret.

Q4: Why didn't he sue Deer for libel?

A4: He dropped the suit at the advice of his lawyers who though it too much to try to pursue this while facing the GMC hearings. (Didn't mention that he dropped the Deer suit 6 months before the GMC started in on him. Also didn't explain why he didn't go after Deer again after the conclusion of the GMC hearings.)

Q5: Student working on DNA analysis says 19(?) different DNA defects are associated with autism. Why did he cross off genetics from his list?

A5: Only 2% of autism is genetic. Also, with many different DNA defects associated with autism, it is hard to sort out.

Q6: Does mercury cause bowel disease?

A6: Yes (but he made no mention of dose or type (metallic, methyl or ethyl) nor any comparison with what's in or used to be in vaccines).

Q7: The "Mommy" question...: The media won't probe for the truth so what to do? (There was a lot of media bashing.)

A7: Wakefield's response was that he wasn't anti-vax, just anti-some vax, and you need to consider both the upside and downside of both vaccines and of disease. (Upside of disease? WTF?) He said he is pro measles vax. I didn't quite understand his answer, but I think he was saying it was because mother's antibodies aren't
passed on in their milk (to measles specifically or antibodies in general, I'm not sure) if the mother was vaccinated. I think he was implying that the antibodies would be passed on only if the mother had acquired them by actually having measles. Is there any truth to this?

I think his implication was that the need for measles vaccine is due to the vicious cycle that mothers who were vaccinated rather than who have had measles won't pass on their immunity and thus their children need to be vaccinated too.

This begs the question what of children who aren't breast-fed? (I know I'm misusing "begs the question".)

Not sure if he thinks that all children should get measles vax after they are off breast milk (i.e. at about 1 year).

Without the vaccine, which would be the ideal state if we weren't already locked in this vicious circle, I guess kids would all get measles when they were one. I had measles when I was one, and it didn't kill me (though it came awfully close.)

Then he went off on a tangent about receiving multiple vaccinations in too short a time (one a year seemed to be his limit; he mocked Paul Offit for suggesting that (?)120,000 antigens could be presented at once and a kid's immune system could cope).

He said mumps and chicken pox vaccines were bad because they wear off and getting these diseases as adults was much worse than as children. (Seems if this is true, it argues for boosters, not abandonment of vaccines.) He didn't mention shingles.

Then launched into another thimerosal tirade (he brought it up a lot). He said at the meetings where they decided to remove it, many of the doctors present were arguing that it shouldn't be removed even though they would never give it to their own children (he painted the "medical establishment" as hypocrites a lot), and he claimed a vast conspiracy to cover up all the damage thimerosal had done. I think this is the only time he mentioned, even obliquely, that thimerosal had been removed from most vaccines a decade ago, making it a dead horse, and he never mentioned that its removal had no effect on autism rates.

Q8: Recent studies have shown a link between maternal stress and autism.

A8: This proves the link between vaccines and autism. (I'm pretty sure that no link between maternal stress and autism would also prove vaccines cause autism, but his answer was vague enough to mean whatever anyone wanted it to mean.)

Q9: Disappointingly, one of the questions was from a pediatrician. She introduced herself as Janet Levitan and said that the autism epidemic exploded after they started routinely vaccinating 1 day olds for HepB. (She cited no data or studies; it sounded totally anecdotal.) It was more a "Thank you, Doctor Wakefield" than an actual question, as far as I could tell.

A9: Wakefield's response was gratitude.

(Turns out Orac has blogged about her.)