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The Panic Virus

13 Jan

Seth Mnookin’s book, the Panic Virus, debuted this week. Mr. Mnookin took a look at the vaccine scares and started a two year project of in-depth research resulting in this book. Not too surprisingly, much of his work relates to the autism-parent groups who promote the ideas of an autism epidemic caused by vaccines. Andrew Wakefield and the MMR scare also play a role.

The book is very well written. I believe I have spent more time than most on the subject and I still found a lot of new and interesting information in this book. Mr. Mnookin had great access. He interviewed David Kirby and Lyn Redwood, including a discussion of how the book Evidence of Harm came into being. He spoke repeatedly with Andrew Wakefield. He attended AutismOne. This is not a “Google Ph.D.” research effort. He got down into the trenches and he brings new information to light.

In many ways, the book is a discussion of how people come to believe and promote ideas that are false. Unfortunately for us, vaccine-rejectionists and parts of the autism communities present the best example of this behavior in modern history.

Mr. Mnookin brings an outsider’s eye to the story and comes down clear and decisive that there really is no debate on these issues, no real controversy. The science is in and it is clear.

He also takes journalists to task for being uncritical of the stories presented to them. There is likely no better example of this than how the press treated Andrew Wakefield and his studies, starting with the 1998 Lancet article. Even now we still see a lot of “he said/she said” type reporting on Mr. Wakefield which gives a false impression that the evidence and support for both sides is somewhat equal. Unfortunately, things are getting worse rather than better with time as media outlets downsize and science writers are let go.

This is from the press release:

Seth Mnookin—the New York Times-bestselling author of Feeding the Monster and Hard News (a Washington Post Book World “Best of 2004” selection)—delivers a real-life detective story that exposes what may well be the biggest health scare hoax of all time in THE PANIC VIRUS: A True Story of Medicine, Science, and Fear (Simon & Schuster; January 11, 2011; $26.99). Mnookin, a contributing editor at Vanity Fair with a Harvard degree in the history of science, looks at the bogus vaccine panics—which started with a single, now totally discredited paper linking the measles, mumps, and rubella (MMR) vaccine with autism—that have cost tens of millions of dollars and resulted in the deaths of an untold number of infants and children around the world.

Mnookin explains how dishonest researchers and snake-oil salesmen have taken advantage of desperate parents by perpetrating a fraud, and how the media—by ignoring facts and pretending that all points of view are equally valid—has through its irresponsible coverage fueled a controversy that never should have arisen in the first place. He explores how cultural relativism and insular online communities have blurred the distinction between facts and feelings to the point that the traditional American ethos of individualism has been transformed into one in which individualized notions of reality, no matter how bizarre or irrational, are repeatedly validated. In addition, he gives readers fresh and fascinating insights into the scientific process, the nature of knowledge, and the subconscious forces that drive much of our daily lives.

Why are we so willing to believe things that are false?

Mnookin’s interest in the anti-vaccine movement began in 2008, as a newly married man looking forward to having children, after a series of conversations with parents of young children regarding their anxiety about vaccines and autism. Much to his surprise, a significant number of this group of well educated professionals in New York City had decided to deviate from the recommended vaccination schedule for their children, despite the fact that there is overwhelming scientific consensus supporting vaccination on one side and quack doctors, New Age healers, and celebrities like Jenny McCarthy on the other. The subject took on even greater significance for Mnookin with the birth of his son in 2009.

After he began researching the issue and arrived at the conclusion that there was no evidence supporting a link between childhood inoculations and developmental disorders, Mnookin realized that this pseudo-controversy raised a series of broader questions that go to the heart of social dynamics and human cognition: Why, despite all the evidence to the contrary, do so many people remain adamant in their belief that vaccines are responsible for harming hundreds of thousands of otherwise healthy children? Why is the media so inclined to air their views? Why are so many others so readily convinced? Why are we so willing to believe things that are, according to all available evidence, false?

In an effort to answer those questions, Mnookin interviewed scientists and doctors, healers and mystics, government appointees and elected officials. He also spoke with dozens of parents who watched helplessly as their children withdrew behind a wall of autism. “The suffering of parents who feel unable to protect their children is almost impossible to describe – and helplessness only begins to cover the range of emotions they endured,” Mnookin writes. There was also guilt, resentment, bitterness, isolation, and anger: Surely someone or something was to blame for the ways in which their lives had been upended.

Every year, some two thousand parents of autistic children travel to Chicago for the annual conference of AutismOne, which claims to be the single largest producer of information about the disease in the world. What is paramount for these parents, as Mnookin discovered when he attended, is the sense of support and fellowship they receive. Nevertheless, the organization is relentlessly and virulently antivaccine, with one presenter claiming that vaccines are a “de facto selection of the genetically vulnerable for sacrifice” and calling doctors who administer vaccines the moral equivalent of “the doctors tried at Nuremberg.”

Mnookin writes: “If you assume, as I had, that human beings are fundamentally logical creatures, this obsessive preoccupation with a theory that has for all intents and purposes been disproved is hard to fathom. But when it comes to decisions around emotionally charged topics, logic often takes a back seat to what are called cognitive biases – essentially a set of unconscious mechanisms that convince us that it is our feelings about a situation and not the facts that represent the truth.” These same mechanisms – and the same rejection of the scientific method and the principles of deductive reasoning that have been the foundation of rational society and medical progress since the Enlightenment – are dangerously at work in the so-called debates about evolution and climate change, he suggests.

Brimming with vivid personalities, engaging anecdotes, authoritative science, historical sweep, and plain-English explanations, THE PANIC VIRUS is one of those rare books that entertains at the same time that it illuminates the mysteries of medicine and addresses a subject of vitally important concern to millions of parents, with life-and-death repercussions for everyone else on the planet.

Seth Mnookin on CNN “American Morning”

11 Jan

The Panic Virus, a book by Seth Mnookin came out today. Mr. Mnooking was interviewed for CNN’s “American Morning”. I agree with much of what he has to say: the “debate” is not balanced. It’s a few people vs. a ton of data and many more people. It is good that the vaccine-autism hypothesis was tested, but it is time to move on.

http://i.cdn.turner.com/cnn/.element/apps/cvp/3.0/swf/cnn_416x234_embed.swf?context=embed&videoId=bestoftv/2011/01/11/exp.am.intv.holmes.mnookin.cnn

Seth Mnookin responds to Andrew Wakefield on CNN

6 Jan

Seth Mnookin is the author of the upcoming (next week) book “The Panic Virus“. As someone who spent 2 years researching the issue of the vaccine/autism hypothesis, he was chosen to respond to Andrew Wakefield on CNN.

They note this in the story, but I will point it out again here: Andrew Wakefield would not appear together with Mr. Mnookin. This isn’t new. Last year the program “The Doctors” had a program with Jenny McCarthy, J.B. Handley, Dr. Jerry Kartzinel and others–where they only agreed to go on air if the there were no people with opposing views present.

http://i.cdn.turner.com/cnn/.element/apps/cvp/3.0/swf/cnn_416x234_embed.swf?context=embed&videoId=health/2011/01/06/ac.discussing.wakefield.cnn

Mr. Mnookin points out that Mr. Wakefield tried to frame the story as a single reporter (Brian Deer) “out to get him”.

He has framed this consistently as this one renegade journalist who’s out to get him. In fact, there was a British — the Medical Research Council, which licenses doctors in the U.K., spent two-and-a- half years looking into his work. It was the longest investigation they had ever done.

On the subject of Mr. Wakefield’s scientific credibility:

GUPTA: No, I think that — I think this is a pretty big deal, what’s happened today.

But, you know, he didn’t — he hasn’t had really credibility within the scientific world for some time. I mean, as you pointed out, he’s been stripped of his medical license. The paper has been retracted. His co-authors all essentially left the paper.

The problem is that Mr. Wakefield’s audience is not the scientific community. The damage he does is not within or to the science community. The damage is to public health and to the autism communities. I am hopeful that this paper in the BMJ will reduce what credibility Mr. Wakefield still has and the damage he is causing.

Mr. Mnookin has a blog post of his own on the BMJ article and editorial: The problems with the BMJ’s Wakefield-fraud story

Here is the transcript:

COOPER: Also joining us right now is Seth Mnookin, author of “Panic Virus.”

Andrew Wakefield would not go on the program with you.

SETH MNOOKIN, AUTHOR, “THE PANIC VIRUS: A TRUE STORY OF MEDICINE, SCIENCE, AND FEAR”: Right.

COOPER: He would only go on if Sanjay and I were — were asking the questions.

What do you make of what he said?

MNOOKIN: I find it — I find it upsetting and — and disturbing.

He has framed this consistently as this one renegade journalist who’s out to get him. In fact, there was a British — the Medical Research Council, which licenses doctors in the U.K., spent two-and-a- half years looking into his work. It was the longest investigation they had ever done.

And that was the group that stripped him of his right to practice medicine and — and said that he had displayed a callous disregard for children.

There have been dozens of studies.

COOPER: They said a callous disregard for children?

MNOOKIN: Callous disregard for children.

COOPER: That’s why — and that’s — in stripping him of his — of his license?

MNOOKIN: Well, the — the — there were several reasons they listed. The callous disregard had to do with performing unnecessary tests on children who had been brought to him to support this point, including spinal taps, invasive examinations, colonoscopies on very, very young children.

They also found that there was — his evidence couldn’t be backed up. His — his data couldn’t be backed up. So, for it to be portrayed by — by — by Andy Wakefield as this being one person out to get him, you know, I think what he’s banking on is that people won’t actually look and see — look and see what the reality of the situation is.

(CROSSTALK)

COOPER: When you read this report by — by Deer…

MNOOKIN: Right.

COOPER: And I don’t know this guy Deer at all, but, I mean, I have read his entire report. It’s — it’s — it’s pretty exhaustive.

MNOOKIN: Not only is it exhaustive, but, if you took out everything that Brian Deer had ever written, there would be exhaustive evidence that — that this was not trustworthy.

Dozens of researchers in dozens of countries have studied literally millions of children around the world. And this notion that there’s some sort of conspiracy between public health officials, doctors, journalists, drug companies, researchers around the world, you know, it — it would be the most brilliant conspiracy that had ever been hatched.

And — and — and Andrew Wakefield’s setting himself up as this one renegade or this band of renegades, you know, sort of fighting against this is — is, I think, laughable.

COOPER: Sanjay, does he have any credibility?

GUPTA: No, I think that — I think this is a pretty big deal, what’s happened today.

But, you know, he didn’t — he hasn’t had really credibility within the scientific world for some time. I mean, as you pointed out, he’s been stripped of his medical license. The paper has been retracted. His co-authors all essentially left the paper.

COOPER: But, you know, let me just say one thing. Because there — there is so much distrust of big pharmaceutical companies, there are going to be a lot of people watching this who say…

GUPTA: Well, that…

COOPER: … you know, we’re all in the pockets of big pharma, or, you know, that — that there is this conspiracy.

GUPTA: That’s what I was going to say. I don’t know that it’s going to change people who are still going to be very concerned about vaccines.

And the reality is that, if we had a great answer as to what causes autism, I think that would — that would change this debate altogether. But we don’t. So, you — it’s trying to prove a negative, obviously, an impossible thing to do.

But, in his case, I — I don’t think that it — while as big a deal as this is in science today, I don’t know how much this changes the debate overall, because his — his — his science has been discredited in the scientific community for some time.

COOPER: But — but, I mean, it’s understandable. Look, parents — look, we don’t know about — a lot about autism, and — and the numbers are growing. And that is — is of concern. And it’s understandable parents would latch on to anything.

But — but in terms of just facts, and we do — you know, I believe in facts a lot on this program — I mean, Seth, are there peer-reviewed scientific reports that — that indicate a link between…

MNOOKIN: No.

COOPER: … between vaccines and — and autism?

MNOOKIN: No. And not only is there not peer-reviewed work, this is probably the most studied public health issue involving children over the last 20 years.

COOPER: Would public health officials have an interest in — in hiding a link, if there was?

MNOOKIN: Public health officials, I think, would have an interest in keeping children safe.

Even if there — if there was a link and it was discovered, I think public health officials would — would have an interest in doing whatever they could to protect children. This notion that everyone’s trying to — to — to cover their butts and — because they have already been — been perpetrating this scam, is — to distrust the motives of that many people around the world, you know, you would need to assume that — that everything going on is in some ways out to get you.

I think Sanjay’s point about our not knowing what causes autism is really in some ways the crucial one, because it’s so frightening to parents. The numbers are rising. And here’s something that you can point to. And because it occurs at the same time, you always get vaccinated when you’re a child, and autism is diagnosed when you’re a child, so it’s easy to understand why patients would latch on to that as a connection.

But it has no more validity than — than if I said microwave popcorn causes autism. The numbers have gone up since we have started eating microwave popcorn. There’s just — there’s absolutely no evidence supporting a link.

COOPER: Do — do you agree with that?

GUPTA: Yes. I mean, and I think…

(CROSSTALK)

COOPER: And, as a parent, what do you tell other parents?

GUPTA: Well, I — I have three children. I got my kids vaccinated on schedule, on time. So, you know, I mean, that’s — I think the proof’s in the pudding in my case, because I had to make that decision.

But I think, also, you know, that I — you could get a sense of where the debate goes from here. Wakefield’s paper may be discredited, but we still don’t know. We give more vaccines now. We give them in different schedules. Could there be something new that’s possibly causing this uptick in autism?

And — and — and I think the question is going to remain out there, despite what’s happened today. You know, the smallpox vaccine, when it was given, it causes an immune response to the body. It was a — a really profound immune response, more powerful than all the vaccines that we give today, and yet the autism rates are higher now.

So, if it’s the vaccine itself, why wasn’t it happening when we gave these really, really powerful vaccines so many years ago?

COOPER: And, Seth, the report that is out today by this journalist Deer, it indicates that he had a financial — that Wakefield had a financial motive.

MNOOKIN: Right.

COOPER: What was the financial motive?

(CROSSTALK)

MNOOKIN: Well, there were a couple of things.

One, he had filed a patent application for an alternate measles vaccine several months before the paper came out, which he did not disclose at the time. It was precisely the vaccine that you would have wanted if you stopped using the three-in-one MMR vaccine. It was just for measles.

So, that’s one very obvious thing. He also was — his work was being funded by a law firm that was involved in potential vaccine litigation. And a number of the children in this study were also involved with that law firm.

So, the — for — for him to say, you know, “I had no financial connection, and, to prove it, you should read my book,” you know, it — it’s — it’s sort of like saying, no, no, I swear I’m a good guy, and, to prove it, listen to me.

It — you know, it just doesn’t hold up.

COOPER: I read — I read in “Newsweek” this week in an article you wrote about kids who have died because they haven’t been vaccinated…

MNOOKIN: Yes.

COOPER: … died — died from things that they shouldn’t have died of. MNOOKIN: Yes.

COOPER: Whooping cough.

MNOOKIN: In 2010 alone, 10 infants died of whooping cough in California, which is astounding that that is happening today.

There are children that have died of Hib, diseases that I have always assumed were definitely in the past in this country. There was a measles epidemic several years ago in California, in San Diego, that cost $10 million to contain, and resulted in a quarantine of dozens of children.

That meant that those parents then had to find some way to take care of those kids, either not go to work or pay for day care. So, even when you have a case like with that measles epidemic, where it’s true that children didn’t die, you had one infant that was hospitalized for a serious amount of time, and dozens of families that had to pay an enormous amount of money because of this.

COOPER: This is maybe an unfair and an impossible question to answer, is, do you believe Wakefield believes what he’s saying?

MNOOKIN: I talked to him several times over the past several years. Mostly in the context of these conferences that he was referring to where he’s surrounded by people who adulate him.

I think that it’s certainly possible that, at this point, he’s been living in this for so long that he thinks it’s true. I have talked to other people involved in that community who have told me candidly that they wish the conversation could move on from that, because they understood that the science is not…

COOPER: Has the media played a role in perpetuating this? Because you see in a lot of TV shows, you know, on this subject, several sides represented. You have the people who believe the vaccines cause autism and the people who don’t. And it seems to give equal credence, you know.

Or you have a famous person, you know, like Jenny McCarthy, and nothing against her personally, but you know, who is going to get a lot of attention. Has that made the problem worse? Has that given the — this side more credence?

MNOOKIN: I think absolutely. And an example I use is there are people who believe the earth is flat. Most people obviously do not, but if you had one person who believed the earth is flat and one person who said, “No, it’s actually round,” and they were discussing the issue together, it would seem that the consensus was split 50/50.

So here you have a situation in which you have millions of doctors, public health officials, all coming down on one side, and then Andrew Wakefield and a very small number of people who are associated with him, a miniscule number of people, saying, “No, this is what’s actually going on.” But because we can’t present millions of points of view or millions of people, it ends up sounding — there’s this false equivalency. It ends up sounding on the one hand, on the other hand, when there really is only one hand in this case.

COOPER: Do you agree with that, there is only one hand in this?

GUPTA: Yes, and I mean, the one thing I would say with the earth, flat earth, round thing, is we know the answer to that now.

One of the things that again has made this discussion so difficult is that, at the end of the discussion, no matter how much you disagree with the other person, if they come back to you and say, “So what does cause it?” We still don’t have that great answer. It could be some environmental unknown with a genetic predisposition. Who knows? But that, in part, has made this difficult.

Also, you know, just as a parent, I can tell you, it’s so deeply personal. And that also, despite what’s happened today, I think many parents who are dealing with this right now are still believing this, despite all the evidence to the contrary.

COOPER: It’s a fascinating topic. I appreciate both you guys being here with your expertise. Thank you. Dr. Sanjay Gupta, Seth Mnookin.

Commentary on Mitochondrial Dysfunction in Autism

22 Dec

I recently wrote about the paper Mitochondrial Dysfunction in Autism by the MIND Institute. It is difficult to write about the topic of mitochondrial dysfunction and mitochondrial disorders and autism without discussing vaccines. Even the Simons Foundation blog mentioned vaccines in their treatment of the paper, even though the paper makes no comments about vaccines.

Why? Because the case of Hannah Poling and, especially, the way David Kirby presented it to the public has linked autism–mitochondrial dysfunction–vaccines into one neat package. With posts like “NEW STUDY – “Mitochondrial Autism” is Real; Vaccine Triggers Cannot Be Ruled Out” and “The Vaccine-Autism Story: Trust Your Government, or Be a Patriot and Get on Google”. In the latter post he wrote:

“Google “autism and mitochondria,” (96,900 hits) and then Google “mercury and mitochondria,” (169,000 hits) and draw your own, informed conclusions. “

It was very much in David Kirby’s style. Don’t come out and say something directly (like, “mercury is the cause of mitochondrial disease”) but lead the reader along with a series of, well, leading statements.

A more responsible approach would be that one needn’t trust the government nor seek advice on google. A more responsible approach for Mr. Kirby would be to suggest that perhaps, just perhaps, parents of autistic kids should seek out the advice of experts in mitochondrial medicine. Mr. Kirby clearly had an agenda, and it wasn’t the well being of autistics. He was promoting the idea that vaccines caused an autism epidemic.

Mr. Kirby thankfully appears to have moved on from focusing his attention on promoting the vaccine-autism hypotheses. And yet, there is obviously a hunger amongst his old readers for this discussion. This can be seen in Mark Hyman’s blog post at the Huffington Post, “Autism Research: Breakthrough Discovery on the Causes of Autism” which has nearly 1,900 comments. Where David Kirby was promoting himself and the interests of groups like SafeMinds and Generation Rescue, Dr. Hyman uses the MIND Institute paper to promote himself and his own business.

What is worse is the way he goes about doing this. Dr. Hyman is even less capable of covering his obvious mistakes than was David Kirby.

Dr. Hyman writes:

While we don’t have all the answers, and more research is needed to identify and validate the causes and treatment of autism, there are new signs of hope. A study just published in The Journal of the American Medical Association by researchers from the University of California, Davis called “Mitochondrial Dysfunction in Autism” (i) discovered a profound and serious biological underpinning of autism — an acquired loss of the ability to produce energy in the cells, damage to mitochondria (the energy factories in your cells), and an increase in oxidative stress (the same chemical reaction that causes cars to rust, apples to turn brown, fat to become rancid, and skin to wrinkle). These disturbances in energy metabolism were not due to genetic mutations, which is often seen in mitochondrial problems, but a condition the children studied acquired in utero or after birth.

The statement is amazing. Not in a good way. It is amazing that someone could write such an irresponsible paragraph and attribute it to a paper which clearly doesn’t make or support these claims.

The very title of Dr. Hyman’s post (Autism Research: Breakthrough Discovery on the Causes of Autism) is in error. The study makes no claims about the causes of autism. Dr. Hyman didn’t have to look any farther than the paper itself which clearly states as one of the limitations:

Sixth, inferences about a cause and effect association between mitochondrial dysfunction and typical autism cannot be made in a cross-sectional study.

Given this, we can also throw out Dr. Hyman’s wild claim that the study’s authors “discovered a profound and serious biological underpinning of autism”.

Since it is already clear that Dr. Hyman is using the paper to promote his own ideas, regardless of the facts in the paper, I won’t posit as to why he claims that the mitochondrial dysfunction is “acquired”, or that this is due to “damage” to mitochondria. The paper does not support either of these conclusions as fact.

He makes the claim that “These disturbances in energy metabolism were not due to genetic mutations, which is often seen in mitochondrial problems, but a condition the children studied acquired in utero or after birth.”

I am unsure how Dr. Hyman reached this conclusion. The paper notes differences in the mtDNA of many of the children studied. It does not provide evidence as to when or how these genetic differences arose.

Table 3 clearly shows the genetic measures the MIND Institute researchers used. Question the method as you may (or some experts have), there are differences in the mtDNA. The methodology doesn’t allow one to state if these difference were present at birth or not.

The MIND Institute hosts an interview with Prof. Giulivi
At about 3:30 into Prof. Giulivi’s interview, she states clearly that they can not conclude if the mitochondrial dysfunction they claim causes autism or is a result of it.

It is hard for me to decide if Dr. Hyman is more irresponsible than David Kirby or if it is the other way around. David Kirby was certainly doing some self promotion, but his impact was largely as a publicist for the autism-as-vaccine-injury groups like SafeMinds and Generation Rescue. Dr. Hyman is clearly focused on promoting his own services as a practitioner of alternative medicine.

The problem is that in the end, rather than being a leader in treatment, as Dr. Hyman presents himself, such irresponsible actions hinder advancement.

The Huffington Post: Featuring bad science, facile reasoning since 2005

14 Dec

That’s the title of a new blog post by Seth Mnookin, author of “The Panic Virus“. The title is spot on (and could be the the title of a book in its own right): The Huffington Post: Featuring bad science, facile reasoning since 2005.

Seth Mnookin took a look at unscientific thinking that can lead to dangerous results. Not surprisingly, he found that the anti-vaccine movement and the autism-vaccine discussion in particular made an excellent core for his book. In his first blog piece related to Panic Virus, Mr. Mnookin takes a look at how the Huffington Post reported a recent study on mitochondrial dysfunction and autism. The Huffington Post piece, authored by Mark Hyman, made claims well beyond those supported by the paper itself.

A brief quote by Mr. Mnookin:

If you’re confused as to why The Huffington Post would run Hyman’s piece — well, I have my theories, but suffice it to say that the site arguably features more scientific quackery than any other mainstream media outlet.

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