The NIMH Center for Collaborative Genetic Studies

17 Jan

I follow the Director’s blog at the National Institute of Mental Health (NIMH). A recent post is titled Looking forward to 2011

You probably won’t be surprised that I did a search for “autism” in the text. I only found one hit:

Genomics and Other High Throughput Technologies

What happened with computers in the last decade – faster, cheaper, better – is happening with technologies to sequence the human genome today. Once cost prohibitive, the price of DNA sequencing has dropped drastically in the past several years. Soon, whole genome sequencing will become the norm in research. With such precise methodology, this will be the year for discovering many new genetic variants associated with mental disorders. To expedite our discoveries, it will be key to share high quality data produced by these sequencing efforts and to build the computational resources to analyze the impending avalanche of data. The NIMH Center for Collaborative Genetic Studies has become the world’s largest repository for DNA samples from individuals with mental disorders and their families. In 2011, with samples from this repository, along with consortia developed with investigators around the globe, we should get our first comprehensive view of the genomic risk for autism, schizophrenia, and bipolar disorder.

emphasis added.

It’s an interesting hit. First, the director of NIMH is in a position to know what research is in the pipeline. If he says 2011 should give us our first “comprehensive view” of the genomic risk, I’m willing to bet that something will come out this year. More importantly, I was unaware of the Center for Collaborative Genetic Studies.

Leave aside the genetics part of this for the moment and just take a look through the site. It is a great idea. Making data from multiple investigations available to other researchers.

Here’s the “scientific mission”:

Scientific Mission

Given the major public health implications of identifying genes that contribute to the susceptibility for severe brain disorders, the National Institute of Mental Health (NIMH) has funded a Human Genetics Initiative. The goal of this Initiative is to study individuals affected with schizophrenia, bipolar disorder, or Alzheimer’s disease and their relatives, in order to establish a national resource of clinical/diagnostic information and immortalized cell lines for DNA extraction. These data and biomaterials are distributed to qualified investigators in the wider scientific community, for use in research on the genetic basis of these disorders. The NIMH Human Genetics Initiative is supported by the Office of Human Genetics & Genomic Resources in NIMH’s Division of Neuroscience & Basic Behavioral Science (DNBBS).

Progress in scientific understanding is best achieved by the free and open exchange of knowledge, data, and ideas. The NIMH Human Genetics Initiative was founded on the principle that timely access to primary data and biomaterials for human genetic research may stimulate research and development and maximize the benefits afforded to individuals affected with these disorders and their family members. Progress in these efforts is paralleled by growing interest throughout the scientific community in having timely access to the information and resources that may speed the understanding of disease etiology, refinement of diagnostic systems, and development of novel therapeutic agents and preventive interventions.

The autism page for the site gives a brief statement and links to the autism pages. You can see what papers have already come out of the autism consortium, including many available for download. They have data on sibling pairs, where genetic data on families with families with 2, 3, 4, even 5 ASD kids are included. They are up to revision 7 on the data. You can see what data are in the pipeline in the future releases page. There are a lot of data in the works, with a lot of it coming on line in the next year or 2.

The idea is great. I’d love to hear from researchers as to how well it really works. But the data, the raw data, are being made available to multiple researchers. There are other projects like this out there in autism research.

Salon retracts RFK Jr. article

16 Jan

In 2005, Salon published online an exclusive story by Robert F. Kennedy Jr. that offered an explosive premise: that the mercury-based thimerosal compound present in vaccines until 2001 was dangerous, and that he was “convinced that the link between thimerosal and the epidemic of childhood neurological disorders is real.”

The piece was co-published with Rolling Stone magazine — they fact-checked it and published it in print; we posted it online. In the days after running “Deadly Immunity,” we amended the story with five corrections (which can still be found logged) that went far in undermining Kennedy’s exposé. At the time, we felt that correcting the piece — and keeping it on the site, in the spirit of transparency — was the best way to operate. But subsequent critics, including most recently, Seth Mnookin in his book “The Panic Virus,” further eroded any faith we had in the story’s value. We’ve grown to believe the best reader service is to delete the piece entirely.

“I regret we didn’t move on this more quickly, as evidence continued to emerge debunking the vaccines and autism link,” says former Salon editor in chief Joan Walsh, now editor at large. “But continued revelations of the flaws and even fraud tainting the science behind the connection make taking down the story the right thing to do.” The story’s original URL now links to our autism topics page, which we believe now offers a strong record of clear thinking and skeptical coverage we’re proud of — including the critical pursuit of others who continue to propagate the debunked, and dangerous, autism-vaccine link.

Well done Salon.

Salon retracts Robert Kennedy’s “Deadly Immunity”

16 Jan

One of the worst pieces written claiming that mercury caused an autism epidemic was the piece “Deadly Immunity” by Robert Kennedy Jr. Salon.com and Rolling Stone co-published the piece. It was immediately met with criticism and corrections: multiple correction pieces were published.

Salon has decided to review the piece and decided that corrections were not enough. They’ve pulled the piece from their site. Here’s the statement.

Correcting our record
We’ve removed an explosive 2005 report by Robert F. Kennedy Jr. about autism and vaccines. Here’s why

In 2005, Salon published online an exclusive story by Robert F. Kennedy Jr. that offered an explosive premise: that the mercury-based thimerosal compound present in vaccines until 2001 was dangerous, and that he was “convinced that the link between thimerosal and the epidemic of childhood neurological disorders is real.”

The piece was co-published with Rolling Stone magazine — they fact-checked it and published it in print; we posted it online. In the days after running “Deadly Immunity,” we amended the story with five corrections (which can still be found logged here) that went far in undermining Kennedy’s exposé. At the time, we felt that correcting the piece — and keeping it on the site, in the spirit of transparency — was the best way to operate. But subsequent critics, including most recently, Seth Mnookin in his book “The Panic Virus,” further eroded any faith we had in the story’s value. We’ve grown to believe the best reader service is to delete the piece entirely.

“I regret we didn’t move on this more quickly, as evidence continued to emerge debunking the vaccines and autism link,” says former Salon editor in chief Joan Walsh, now editor at large. “But continued revelations of the flaws and even fraud tainting the science behind the connection make taking down the story the right thing to do.” The story’s original URL now links to our autism topics page, which we believe now offers a strong record of clear thinking and skeptical coverage we’re proud of — including the critical pursuit of others who continue to propagate the debunked, and dangerous, autism-vaccine link.

Two suspects in custody in LA abuse case

14 Jan

The sexual assault story out of LA continues to evolve. The LA County Sheriff’s department is posting updates on this case. They note that the first victim has been identified. Here is part of that statement:

The first victim in the videotaped sexual assaults of persons with disabilities was located on Monday. She was found by state investigators living at a residential care facility within the County of Los Angeles. Sheriff’s detectives immediately went to the facility to interview her. The 25-year old White female (Victim #1) is currently a resident of a residential care facility in the state of California. Her medical conditions have caused her to be physically defenseless; however, she was able to communicate with detectives. The young woman confirmed to detectives that years ago she had been the victim of sexual assaults at a residential care facility in the City of Los Angeles.

This had already been identified by Sheriff’s Special Victims Bureau detectives, thanks to information provided by detectives with the Los Angeles Police Department. Her interview on Monday with Sheriff’s Special Victims Bureau detectives was very emotional and painful for her. Detectives described her as very traumatized. She is being provided with victim assistance. She said she feels safe at the residential care facility where she is now living. She does not want her identity or current residence known. Sheriff’s detectives will not be releasing any information about the residence where the victim is located and are asking that everyone respect her desire for privacy and to feel safe where she now lives. In the interview, she alleged that a few years ago she was sexually assaulted by Suspect Lloyd (Suspect #1) at the residence where they both previously lived as residents.

The LA Sheriff’s department is also updating the public on the status of finding the alleged perpetrators. Two have been found so far. Suspect #1 was identified and brought in to custody. Suspect #4 is already in prison.

The booking photo of Suspect #1 Ernie Lloyd has also been provided with this update. The investigation involving Suspect Lloyd is continuing, as are many other investigative leads on several cases.

Suspect #4, Bert Hicks, is serving a sentence in state prison and is due to be released in 2012. He has not been arrested by the LASD and therefore there is no booking photo for him. His case is under active investigation by the sheriff’s department and LAPD.

Here are the two in custody:

Two suspects are still outstanding:

As noted above, the booking photo of Ernie Lloyd was made public:

According to the news source which posted the booking photo:

The informant who anonymously provided the 100 hours of videos that launched a massive sexual assault investigation, reached out to Sheriff’s Special Victims Bureau detectives on Sunday, January 9. He identified himself to detectives and agreed to meet face to face and discuss the case. The meeting took place for several hours on Sunday.

The informant explained to sheriff’s detectives that he had been given a desktop computer by a drug addict and asked to clean the hard drive. Without knowing what the videos were, he watched a portion of them. He was deeply disturbed by the videos and said what he saw made him sick. He immediately knew that he needed to report it to law enforcement, but feared for his safety. He decided that he would copy the videos onto eleven disks and send them anonymously to the Los Angeles County Sheriff’s Department, along with an anonymous explanation note. The informant still fears for his safety, which is why he does not want his identify to be released.

The Sheriffs are still looking for any information, especially that which could identify other suspects or the victims:

Information can be provided anonymously, by calling Crime Stoppers at 800-222-TIPS (8477), or by texting the letters TIPLA plus your tip to CRIMES (274637) or by accessing the Crime Stoppers website at www.lacrimestoppers.org.

Mr. Wakefield’s business plan as discussed at the GMC hearing.

13 Jan

As Kev has discussed, Mr. Wakefield has put out a press release denying all allegations about research fraud and an attempt to profit from the research he was engaging in. I had hoped to put this all behind us, but I thought for those interested, a more thorough discussion of Mr. Wakefield’s business venture might be appropriate here. I copy below a section of the GMC hearing testimony from Day 31. Mr Cengiz Altan Tarhan, who worked on the finance side of University College London and was brought in to discuss, amongst other things, Mr. Wakefield’s business venture.

Q I am going to be reverting to that role in more detail much later on in the story, but just so everyone knows that is a company that relates to technologies developed by the Medical School, is that correct?
A Not just the Medical School. It is the whole of the university. So it is University College London. The Medical School is a part of the university.

Immunospecifics is discussed below, but it went through name changes, including Carmel. I’ve wuoted a section of testimony below. Questions and answers in the hearing are italicized. The text of the documents is left normal.

The documents discussed involve the plan to spin-out a company from UCL to develop Mr. Wakefield’s invention (as put forth in his patent) into a therapy and as a vaccine replacement.

Q Sir, I am going to call this gentleman from now on in order to protect the confidentiality of the boy, his son, as “Dr 10”. Could we go, please, in volume 2, to page 756a. This is a letter that was sent to you before a meeting. It is from Dr Wakefield to you dated 26 February 1998.

“Re our meeting on Tuesday, 3 March 1997, please find enclosed two references for Alex Korda, our proposed Chairman. I have applied for references for Dr [10], our proposed CEO [Chief Executive Officer], and will pass these on as soon as these are available .

In addition, Dr Kirkpatrick from Denver, Colorado, will be giving a guest lecture on the use of Transfer Factor in the treatment of viral disease on the same Tuesday lunch time in the Department of Paediatric Gastroenterology. I realise that this may be of limited value to you other than reassuring you that Transfer Factor is a credible and rational alternative treatment for viral infections. Dr Kirkpatrick holds certain IPR [intellectual property rights] that may be relevant to our endeavours, and Alex Korda, [Dr 10] and I will be meeting with him to discuss this. I will feed back as soon as I have more information.”

Is that correct?
A Yes.

Q Would you go on to 797, please. That is a memo from you. I am told that is a document that needs to be put back into the bundle. Actually, sir, this is a tranche of documents which goes all the way from 797 to 816. Perhaps I can give them all to you at once so I do not do it piecemeal.

THE CHAIRMAN: I have 797a here.

MS SMITH: In that case you need 797 to precede it and then, after 797a, you go on with the rest of the documents, which go from 798 to 816. Could we go first of all, Mr Tarhan, to 797.
A Okay.

Q This is a memo from you and sent to Mr Dutton, Professor Zuckerman, Mr Blatch and Miss Bishop, dated 6 March 1998.

“Mr Wakefield and potential company proposal

Andy came to see me with two of his colleagues who expressed an interest in setting up a company and acquiring the patents from the School. I asked for some background papers on the two individuals. One is a XXX (10) and the other appears to be an entrepreneur with previous experience with start up companies and is prepared to raise funds for the company.

I have asked them to put forward what they saw as the business plan and way forward and will report back as soon as I have further information.”

Can we then go on to 798. This is your second memo, 6 March 1998, to the same people.

“Further to my memo of 4 March I have now received the attached document from [Dr 10] the Managing Director designate for Immunospecifics Biotechnologies Ltd.

Any comments would be appreciated.”

Attached to that, was there a business plan document?
A That is correct.

Q That starts at page 799. Can I just look in brief terms at the contents of that.

“Immunospecifics Biotechnologies Ltd is a new biotechnology venture specialising in the isolation, production licensing and marketing of a new range of immunotherapeutics, generically known as transfer factors. These compounds are a naturally occurring part of the human immune system and promote specific cell mediated immunity towards the target antigen.

The first clinical condition targeted will be measles virus induced inflammatory bowel disease. It is estimated that this disease costs the NHS about £15,600,000 per annum. The incidence of measles induced inflammatory bowel disease is increasing dramatically in Europe and the States. Immunospecifics … will undertake the start of a two year, double blind, phase 1 clinical trial into the effectiveness of measles specific transfer factor in the treatment of inflammatory bowel disease and an open label study into the effectiveness of the same product in ameliorating pervasive developmental disorder within 3 months of securing funding.

In parallel with the clinical trial the company will develop a clinical diagnostic for the presence of the measles virus. It is estimated that the market for this diagnostic is about £4,000,000 per annum in the UK alone. The company will also investigate the potential of transfer factors as vaccine alternatives. An animal model trial of the value of measles specific transfer factor in preventing inflammatory bowel disease will begin upon securing funding.

On completion of a successful phase 1 clinical trial the company will move towards phase 2 and phase 3 trials for the measles specific transfer factor whilst introducing new potential transfer factor therapeutics to its development portfolio. Prior to the completion of this first phase trial, the company expects to have finished the laboratory development of the clinical diagnostic, completed the open label study into pervasive developmental disorder and finished the animal study into the potential of transfer factor as a vaccine.

The company is looking to raise about £2,100,000 to undertake this development programme.”

Moving on to page 800,

“THE PRODUCTS

[Immunospecifics] will specialise in the production, formulation and sale of a wide range of immunotherapeutics, generically known as transfer factors (TFs). [Transfer factors] are a naturally occurring component of the immune system which have been shown to confer antigen specific cell mediated immunity. This form of immunity is important in overcoming viral infectious agents. Many viral agents have the capacity to suppress the body’s cell mediated immune system (e.g. Human Immunodeficiency Virus). Overcoming this suppression through the introduction of an antigen specific cell mediated immunity promoter has enormous potential clinical significance.”

Then it sets out the history. Would you go on to page 801, the top of the page and second paragraph down,

“It is [Immunospecifics’] aim to use a high potency, standardised TF preparation in one of the first properly controlled clinical trials of these materials. The target conditions for the trials will be specific forms of inflammatory bowel disease (IBD) and a condition affecting children known as pervasive developmental disorder (PPD). These trials will begin within the first three months of the company’s establishment. Whilst these trials are taking place, the company will be purifying and characterising the active compounds in the TF preparation. Once isolated and characterised, the potential for this molecule as a measles specific vaccine will be evaluated in animal model systems.”

Going on to page 802 and just past the middle of the page,

“STRATEGY AND OBJECTIVES

[Immunospecifics] is at present no more than a concept, but one with a unique opportunity. The strategic goal for the venture will be to achieve full regulatory approval for the use of antigen (infectious agent) specific transfer factors in a variety of clinical conditions where existing treatment regimes are either non-existent or have limited effectiveness. This strategy will permit the company to establish a clear technical and medical lead in this area with a resulting dominant market share. Paralleling the use of [transfer factors] as therapeutics will be a research programme aimed at demonstrating the value of [transfer factor] as a vaccine.

The objectives and associated tasks for the first two years to develop the concept into a full-scale venture are summarised in the following points.”

Turning back to page 801 for a moment, Mr Tarhan, and the bottom of the page, the last paragraph reads,

“It is [Immunospecifics’] aim to undertake a phase I clinical trial of a high potency measles specific transfer factor supplied by Fudenberg’s group at a very early stage in the life of the Company.”

Would you turn now to page 804 and this is still under the heading, “STRATEGY AND OBJECTIVES” and to number 7 of 9,

“Establish the potential of the high specific active preparations as a potential measles vaccine

This study will be done in conjunction with ‘Immuno’ a subsidiary of Baxter Health Care, in Austria using simian model systems. The efficacy of the [transfer factor] will be assessed by its ability to prevent measles specific IBD during challenge experiments. ‘Immuno’ have agreed to undertake the preliminary work with the [Royal Free Hospital] at no cost, although Immuno’s contribution is estimated to be of the order of £100,000. If successful this concept will be developed further in collaboration with a major pharmaceutical company, such as Glaxo Wellcome’s Jenner Institute. The full relationship between ISB and Immuno needs to be resolved.”

Going on to page 805,

“Medium term objectives for the venture will be: 1) to take the purified and characterised measles specific [transfer factor] through formal product registration by undertaking phase II and phase III clinical trials; 2) establish the most appropriate route for the commercial development of the product; 3) develop the potential for use of [transfer factors] as vaccine replacements; 4) introduce new anti-infectious agents TFs to the company’s product development portfolio and take them through to formal product registration.”

Wakefield says he’s innocent of fraud…in other news sky still blue

13 Jan

And so…

I want to make one thing crystal clear for the record – my research and the serious medical problems found in those children were not a hoax and there was no fraud whatsoever. Nor did I seek to profit from our findings.

Yeah there was. Yeah you did.

“I stand by the Lancet paper’s methodology and the results which call for more research into whether environmental triggers cause gastrointestinal disease and developmental regression in children. In fact, despite media reports to the contrary, the results of my research have been duplicated in five other countries.

Your paper was fatally flawed. Your research has never been replicated.

“It is not unexpected to see poor reporting and misinformation coming from Brian Deer, the lead reporter of the recent BMJ coverage.

Oooooh, biatchy!

But to see coverage in other media that cites Deer’s shoddy journalism in the BMJ as a final justification to claim there is no link between vaccines and autism is ludicrous.

Who did that? I think most journalists made the link between the MMR and autism, not ‘vaccines’ and autism.

The MMR is only one vaccine of the eleven vaccinations on the pediatric schedule that has been studied for causing developmental problems such as autism. That is fact, not opinion.

Studied and guess what – nothing found AJ!

Any medical professional, government official or journalist who states that the case is closed on whether vaccines cause autism is jumping to conclusions without the research to back it up.

Blah blah blah.

“I continue to fully support more independent research…

Quackery…

…to determine if environmental triggers, including vaccines, are causing autism and other developmental problems. The current rate of autism is 1 in 110 children in the United States and 1 in 64 children in the U.K. My goal has always been and will remain the health and safety of children.

No it hasn’t.

Since the Lancet paper, I have lost my job, my career and my country.

Oh stop being a primadonna. Lost your country?

To claim that my motivation was profit is patently untrue. I will not be deterred – this issue is far too important.

Yeah, you need to find a way to recoup all that lost dosh right?

L.A. authorities find first victim in videotaped sexual assaults

13 Jan

The LA Times recently had a story about sexual abuse of disabled women. Ken brought the story here to LeftBrainRightBrain in Videos show rape of disabled women, police seek help to ID attackers. CNN is now reporting that one of the victims has been identified and one suspect is in custody: L.A. authorities find first victim in videotaped sexual assaults.

Investigators have found the first victim in the videotaped sexual assaults of severely disabled women, and the woman alleges a suspect already in custody had raped her in a Los Angeles care home, authorities said.

The woman, 25, now resides in another Los Angeles County residential care facility. Her medical condition causes her to be physically defenseless, Los Angeles County sheriff’s investigators said.

Having found one of the victims, they were able to obtain information on an alleged attacker:

The woman, found by state investigators Monday, made the sexual assault allegation against Ernie Lloyd, 27, who had turned himself in Saturday following widespread media coverage of the videotaped sexual assaults and a manhunt for four suspects depicted in police sketches. Lloyd was charged with rape of a person with disabilities Saturday after he “implicated himself,” authorities said.

Once again, here are the sketches of the attackers:

Majority of Youth with Mental Disorders May Not Be Receiving Sufficient Services

13 Jan

The National Institute of Mental Health in the U.S. posts periodic science news stories. A recent article, Majority of Youth with Mental Disorders May Not Be Receiving Sufficient Services, caught my eye. I’ll quote a few paragraphs here, but it is worth following the link to the short article.

Inequities in service delivery, be it by age, gender, ethnicity, geography or other reason really bother me.

The article starts out:

A substantial proportion of youth with severe mental disorders do not receive mental health care, according to data from an NIMH-funded survey published in the January 2011 issue of the Journal of the American Academy of Child and Adolescent Psychiatry.

and here are the results:

About 36 percent of youth with any lifetime mental disorder received services, and only half of these youth who were severely impaired by their mental disorder received professional mental health treatment. The majority (68 percent) of the children who did receive services had fewer than six visits with a provider over their lifetime.

Service use was highest among those with ADHD (60 percent), and behavior disorders like conduct disorder or oppositional defiant disorder (45 percent). Among those with mood disorders such as depression or bipolar disorder, 38 percent received services, and 18 percent of those with an anxiety disorder received services. In addition, 15 percent of those with a substance use disorder received services, and 13 percent of those with an eating disorder received services.

Girls were more likely to receive services for anxiety disorders, and boys were more likely to receive services for ADHD. Racial and ethnic minorities were less likely than non-Hispanic whites to receive treatment for any mood or anxiety disorder, and less likely to receive mental health treatment in general than their white counterparts.

We as a people need to do better. Times are only getting tougher economically but we have to close the gap on inequities such as this.

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.

Jenny McCarthy joins the defense of Andrew Wakefield

12 Jan

One of the defenses of Andrew Wakefield is that his paper doesn’t actually claim to have proven that MMR and autism are linked. You can find it in the interviews, you can find it on the Generation Rescue (Jenny McCarthy’s autism organization) website:

The mainstream media is in a frenzy over a new “study” claiming that Andrew Wakefield’s 1998 Lancet paper was fraudulent. For years, the media has mischaracterized Wakefield’s work as implicating the MMR vaccine in the autism epidemic. This was never true, as Wakefield himself wrote in the conclusion to his paper:

“We did not prove an association between measles, mumps, and rubella vaccine and the syndrome described.”

You can find it in Jenny McCarthy’s blog post on the Huffington Post:

Is that the whole story? Dr. Andrew Wakefield’s study of 12 children with autism actually looked at bowel disease, not vaccines. The study’s conclusion stated, “We did not prove an association between measles, mumps and rubella vaccine and the syndrome described [autism].”

And, they are correct. The paper does state that. And it is correct, the study did not prove any link. Which leaves us with the question: how could the press have made such a mistake as to think that the paper supported a link?

For starters, from Andrew Wakefield himself.

From the video that his employer at the time, the Royal Free Hospital put out:

DR ANDREW WAKEFIELD: I think if you asked members of the team that have investigated this they would give you different answers. And I have to say that there is sufficient anxiety in my own mind of the safety, the long term safety of the polyvalent, that is the MMR vaccination in combination, that I think that it should be suspended in favour of the single vaccines, that is continued use of the individual measles, mumps and rubella components.

He called for a suspension of the MMR vaccine at the time. Pretty strong message to send to parents.

In addition, as Jenny McCarthy tries to distance Andrew Wakefield from linking MMR and autism, let’s take a look at her own website, Generation Rescue dot com. They claim that the number one paper that supports the idea that a trigger of inflammation and the current resultant behaviors is the Wakefield 1998 study in The Lancet:

Children with neurological disorders are often suffering from severe gastrointestinal distress and inflammation. A trigger of this inflammation and the resultant behaviors is the MMR vaccine.

We cite four published studies that support this position:

Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children
Lancet 1998 Feb 28 Wakefield AJ, Murch SH, Anthony A, Linnell J, Casson DM, [University Department of Medicine, Royal Free Hospital and School of Medicine, London, UK]

Not surprisingly, the exact same text is included on the “14 studies” website, a site set up by Generation Rescue.

So, according to Generation Rescue, the Lancet article supports the position that the MMR is a trigger, even though the article itself says it doesn’t prove a link.

Generation Rescue and Jenny McCarthy have spent years putting the notion of a link between MMR and autism into the public’s mind. They have relied, heavily, upon the Lancet paper to make this assertion. And now they blame the media for propagating this idea?

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