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Matt Lauer to look at the vaccine-autism “debate”? Oh, goody.

I realize that I’ve gotten into one of those runs where it seems that all I blog about is anti-vaccinationist loons, but, before trying once again to take a break from the madness, I had to go to the well one more time because this looks a bit frightening:

NBC News’ Matt Lauer will take an unprecedented look at the emotional debate surrounding vaccines and the suggested link to autism on Sunday, August 30 at 7 p.m. ET with “Dose of Controversy.” In the one-hour Dateline, Lauer speaks exclusively with Dr. Andrew Wakefield, whose 1998 medical study was the first in the world to suggest a possible link between the MMR vaccine and autism. The British doctor has since influenced the lives and stirred the passions of millions of parents worldwide looking to solve the mystery of what causes the complex developmental disorder.

But Dr. Wakefield’s theories have also raised serious questions from the media and the medical community. Lauer interviews investigative journalist Brian Deer who wrote a critical report for London’s Sunday Times in 2004 detailing what he said were potential conflicts of interest that Dr. Wakefield had never revealed. Lauer also talks with Dr. Paul Offit, a pediatrician at Children’s Hospital of Philadelphia and expert on vaccines who has spoken out on behalf of vaccine safety in the United States.

Now, Dr. Wakefield reacts to his harshest critics on the controversy he’s created over the past decade.

Lauer also reports on Dr. Wakefield’s most recent work in the United States and the medical community’s continuing search for the cause of autism, including new studies from researchers working to understand the disorder that affects 1 in 150 American children.

Apparently there’s also going to be an 8-10 minute segment featuring part of Matt Lauer’s interview with Andrew Wakefield on The Today Show on Friday. Oh, goody.

Andrew Wakefield’s Thoughtful House has released a letter that’s making the rounds on the anti-vaccine and autism quackery websites and sounds vaguely worried:

Dear Friends,
 
As some of you may have already heard, the NBC television network is producing a special on Thoughtful House and Dr. Andrew Wakefield.  We are sending along this note to make you aware of the extent of coverage on various programs and the scheduled broadcast date.  First, though, we thought it was important to help everyone understand our decision to cooperate with the reporter, Matt Lauer, and his producer, Ami Schmitz.
 
In our estimation, there has not yet been any fair coverage in the mainstream media of Dr. Wakefield or the work of Thoughtful House.  While we have a large community of supporters that know Dr. Wakefield’s credibility and the accomplishments of Thoughtful House and our excellent physicians and clinicians, including Dr. Bryan Jepson, Dr. Arthur Krigsman, and Kelly Barnhill, CN, CCN,  many of us in the Autism Advocacy Community spend most of our time communicating with people in similar situations.  Our challenge has always been to reach out to a greater population that might not know or understand what is happening with regard to the autism epidemic and the lack of government research into potential causes, which includes looking at vaccine safety.  We thought that if we ever were able to communicate with a fair-minded journalist working at a media outlet with both credibility and reach then it was likely to be worth the risk trying to tell our story.

We have taken that chance with NBC. While we initially declined their invitation for a story, we were persuaded to move forward when Matt Lauer was proposed as the correspondent. His reputation for being objective and thorough prompted us to reconsider and ultimately to open our doors. In March, TV crews from The Today Show, Dateline, and NBC Nightly News began gathering material at Thoughtful House in Austin. This involved taping long interviews with Drs. Wakefield, Jepson, and Krigsman, some of our therapists, administrators, and, more importantly, a few of our families. The crews traveled to London to report on the Lancet controversy and interviewed many of the central figures relevant to that part of our story. They also taped interviews, presentations, and families in attendance at the Atlanta DAN conference. Dr. Wakefield was flown to New York by the network and received what he described as a “tough but fair” interview in a one-on-one with Today Show host Matt Lauer. The person we have dealt with throughout the course of this project is Mr. Lauer’s producer, Ami Schmitz. Ami has a long resume as a medical journalist and was formerly Dr. Timothy Johnson’s producer at ABC News. In our assessment, she has been thorough and diligent in gathering information, documents, and asking the kind of detailed questions that have been glossed over or conflated in previous reporting. We believe, based upon hours and hours of working with Ami, she is writing an even-handed report, which will be narrated and hosted by Mr. Lauer.

Nothing is certain, of course, so we are taking a risk. However, we believe the potential reward is worth that risk; it’s entirely possible this will be the first time this subject matter (autism, Wakefield, Thoughtful House, vaccine safety research) has been considered objectively in mainstream media. If that is the case, we have the possibility of communicating with millions of people and that will be nothing but positive for those of us dealing with autism in our own families. We will find out this Friday, August 28. A portion of Mr. Lauer’s interview with Dr. Wakefield will be broadcast in an 8-10 minute segment on The Today Show. Either Saturday or Sunday, the NBC Nightly News Weekend will also broadcast a lengthy piece on Thoughtful House and vaccine safety. Coverage will culminate on Sunday night, August 30, at 7 pm EST, with an hour-long broadcast hosted by Mr. Lauer on Dateline NBC. This is scheduled to be adjacent to the Sunday night NFL football game on NBC, which means there is the potential for a large audience. In fact, the cumulative audience for all of these programs means there are likely to be no less than 5 million people who learn about autism and Thoughtful House and, quite possibly, as many as 20 million viewers will see the various broadcasts.

Consequently, you see the reason we decided to cooperate with NBC. The program might just be a game changer in the conversation we are all having in our communities with our governments, health care providers, insurance companies, and overall policies within our culture that marginalize families dealing with autism. We all started off several years ago on what many of us believe is the correct course for treatment and research and it has led us to this moment, and we believe we’ve made the right decision.

We would like to ask all of you that are active in the autism community to hold all judgment and wait to see the final broadcast. NBC has dedicated substantial time and resources to this story and the producer has made every effort to interview people from all points of view. Our hope is that a fair story will be told and you may submit feedback to the network after the shows have aired. Please do not attempt to contact them prior to the broadcast.

Please share this information with your friends, and if there are any last minutes changes, which we are told is always possible in the news business, you can rely on us to bring them to your attention.

Sincerely,
Anissa Ryland
Director of Operations
Thoughtful House Center for Children

My guess is that Thoughtful House and Andrew Wakefield have little to worry about from NBC. Matt Lauer is hardly known for his hard-hitting journalism these days, and we’re not likely to see a TV story in which NBC does for Andrew Wakefield what the Chicago Tribune did for Mark and David Geier and Mayer Eisenstein. This series of reports is likely to be the typical “tell both sides” nonsense. It may pay lip service to science through interviews with the token skeptics, such as Paul Offit and Brian Deer, but my guess is that overall Wakefield will be portrayed as a brave maverick doctor who may have made some mistakes about the science and may have crossed an ethical boundary or two but whose heart is in the right place and who did what he did because he cares so very, very much about autistic children and because he may be on to the “cause” of and “cure” for autism. The hearings of the General Medical Council about Wakefield’s massive conflicts of interest and falsification of data in his original report in the Lancet in 1998 will end up looking like arcane misunderstandings and conflicts. No doubt this impression will be reinforced by fawning interviews with parents (with autistic child nearby) who claim that Wakefield “recovered” and “saved” their children from autism. Against such testimonials, the science that says there is no link between vaccines and autism and that biomedical woo of the type that Thoughtful House is peddling will appear cold, uncaring, hopelessly hidebound, and dogmatic in rejecting the ideas of these “brave maverick doctors.” Meanwhile assumptions of the anti-vaccine movement about an “autism epidemic,” “biomedical” treatments, and recovery from autism will almost certainly go unchallenged.

In other words, NBC will likely look at Wakefield’s claims, weigh them against what scientists say about his pseudoscience, incompetence, and scientific fraud, and then split the difference. I would also guess that NBC will also play to parents fear of vaccines as a marketing tool to increase viewership. I hope I’m wrong, but I’m confident that I’m not. After all, unlike the case in the U.K., very few people outside of those who pay attention to the vaccine/autism manufactroversy have the slightest clue who Andrew Wakefield is. My prediction?

Crowing and celebration on Monday morning about how “fair” NBC was to Thoughtful House.

It’s one prediction that I’d like to be very, very mistaken about.

By Orac

Orac is the nom de blog of a humble surgeon/scientist who has an ego just big enough to delude himself that someone, somewhere might actually give a rodent's posterior about his copious verbal meanderings, but just barely small enough to admit to himself that few probably will. That surgeon is otherwise known as David Gorski.

That this particular surgeon has chosen his nom de blog based on a rather cranky and arrogant computer shaped like a clear box of blinking lights that he originally encountered when he became a fan of a 35 year old British SF television show whose special effects were renowned for their BBC/Doctor Who-style low budget look, but whose stories nonetheless resulted in some of the best, most innovative science fiction ever televised, should tell you nearly all that you need to know about Orac. (That, and the length of the preceding sentence.)

DISCLAIMER:: The various written meanderings here are the opinions of Orac and Orac alone, written on his own time. They should never be construed as representing the opinions of any other person or entity, especially Orac's cancer center, department of surgery, medical school, or university. Also note that Orac is nonpartisan; he is more than willing to criticize the statements of anyone, regardless of of political leanings, if that anyone advocates pseudoscience or quackery. Finally, medical commentary is not to be construed in any way as medical advice.

To contact Orac: [email protected]

205 replies on “Matt Lauer to look at the vaccine-autism “debate”? Oh, goody.”

“and they’ll turn way from the doctor… in the name of ‘balance’ and turn to some crack, witch-doctor, homeopath horseshit-peddler…”

The skeptic now predicts the future? Good stuff.

There is nothing resembling science or skepticism in your pre-emptive strike against Lauer. If his presentation condemns Wakefield you will express your pleasant surprise. If it doesn’t you will strut and huff and puff and say you told us so. Paid political hacks do it on behalf of their clientele every day.

Time to stop pretending you are a skeptic devoted to rigorous science.

“it’s entirely possible this will be the first time this subject matter (autism, Wakefield, Thoughtful House, vaccine safety research) has been considered objectively in mainstream media”

What’s he on about here? I can only assume that by “objectively” he really means “pro-Wakefield”, since he wouldn’t want actual objective coverage, but the mainstream media has been full of articles uncritically repeating his crap. Is that not enough for him?

“Time to stop pretending you are a skeptic devoted to rigorous science.”

Well said, Harold….well said.

@Harold:

Um, how exactly does Orac’s prediction here show he’s not devoted to rigorous science? Whether Orac’s predictions come true or not doesn’t really change the fact that Wakefield practiced some pretty low-quality science, and seems to have not come to terms with the fact that his hypotheses are complete bunk.

What’s he on about here? I can only assume that by “objectively” he really means “pro-Wakefield”, since he wouldn’t want actual objective coverage, but the mainstream media has been full of articles uncritically repeating his crap. Is that not enough for him?

Yeah, but that’s been mostly in the U.K.

As I said before, in the U.S., Wakefield is pretty much an unknown quantity outside of our small circle of “anti-anti-vaxers.” Certainly the public at large doesn’t know much, if anything, about him. Consequently, he has a more or less blank slate to work with here across the pond. Even if there is criticism, my guess is that he’ll come off, as I said before, as the “brave maverick doctor” with a “new idea” who may have cut a few corners and crossed a couple of ethical lines, but who may actually be on to something and who did it because he cares so very, very much about autistic children.

Again, I hope I’m wrong.

Besides, the U.S. is where Wakefield lives now, and I’m sure Thoughtful House will drum up a ton of business from the broadcast, which is likely the real reason he acquiesced to doing the story.

I wonder if Dr. Nancy Snyderman, who does the medical stories on Today show with Lauer, had any input into this special? The reason I ask is she really got into Lauer’s face on the air last October about whether there was any real controversy, right after a nice profile on Dr. Offit.

I was so surprised and pleased by it, I wrote up a transcript here.

“Besides, the U.S. is where Wakefield lives now, and I’m sure Thoughtful House will drum up a ton of business from the broadcast…”

I hope you’re right, because these kids are very sick, and their medical problems are being ignored by “mainstream” medicine.

We were one of the families that TH asked to be interviewed, but we declined. I didn’t want to risk airing our family’s dirty laundry for millions to see, only to have any unpleasantness edited out later. I was also worried that too much emphasis would be placed on the vaccine controversy, which is, from what I’m gathering so far, exactly what will happen, and I wanted no part of that. My son’s endoscopy ended up being rescheduled, so it became a non-issue anway.

Apparently, the child of the parents that were interviewed put on quite a display in the waiting room at the surgery center for the camera crew, and I do hope none of it gets edited out, because America really, needs to see what autistic gut pain looks like.

Actually being fair to Wankerfield would involve locking him up for several million counts of reckless endangerment.

I highly doubt Zucker will let Lauer, who is a pretty darn good interviewer when given time, get away with inacurracies. Zucker’s history (father a cardiologist, personal bout with colon cancer and chemotherapy) and decision making at NBC should take care of any anti-vaccine lunacy.

http://en.wikipedia.org/wiki/Jeff_Zucker

Jen, as an autistic adult, I am both very offended, and very sad for your child or children, that you consider their condition a sickness. I only hope you read some of the many criticisms of Thoughtful House, and stop putting your child or children through so much unpleasantness for no result. Autism is a genetic condition. It is not a disease, and cannot be cured. Your child needs therapy to help learn the skills they will not learn naturally. They do not need endoscopy, colonoscopy, chemical or dietary torture, and it will not “cure” them, because autism is not a gastrointestinal problem. You have been tragically misinformed.

Hi Jen –

Apparently, the child of the parents that were interviewed put on quite a display in the waiting room at the surgery center for the camera crew, and I do hope none of it gets edited out, because America really, needs to see what autistic gut pain looks like.

I could not agree with you more.

– pD

“In the one-hour Dateline, Lauer speaks exclusively with Dr. Andrew Wakefield, whose 1998 medical study was the first in the world to suggest a possible link between the MMR vaccine and autism”

Gee, you’d think it would be somewhat pertinent to mention that the data in the “study” was fabricated. I can’t say I have very high hopes for this programme, although if they let Deer present the evidence against Wakefield without editing it into oblivion, then maybe it won’t be too bad

Jen and pD…no one denies a child with gastric problems needs to have them investigated and treated. However, THEY ARE NOT SPECIFIC TO AUTISM!!!!! If a child is ill with gastric problems, then they need treatment. They don’t have mythological “measles” in the gut. They have allergies, IBS (which my own child has), or some other illness. Treat the illness. No one says they shouldn’t. Any child who is in pain will act out. Make them feel better and they will behave better. This is NOT specific to autism. Then, once they are feeling better, work with the autistic child to learn and develope. For goodness’ sake, QUIT with the lying that only autistic children have gut problems, or that they are ANY different, except for developmentally, than other children.

“They do not need endoscopy, colonoscopy, chemical or dietary torture, and it will not “cure” them, because autism is not a gastrointestinal problem. You have been tragically misinformed.”

Just out of curiosity, before I comment further, what sorts of conditions would warrant endoscopy in a child, in your opinion?

“I can only assume that by “objectively” he really means “pro-Wakefield”, since he wouldn’t want actual objective coverage[.]”

The fact of the matter is, Wakefield is right, and the rest of the medical establishment is wrong. Any objective view of the ‘controversy’ will be firmly on Wakefield’s side. It’s kind of like how Fox News is the only objective (or, as they put it, fair and balanced) news channel on American television.

I guess we’ll have to keep out fingers crossed.
Why is it that some 11 years after Wakefield published his dishonest packet of crud he called a paper that he is still being seen as “The” expert on Autism and Autism spectrum disorders, when his work has been shown to be scientifically questionable at best, and outright fraud at worst ? Do people just not get it ? but then, I suppose I shouldn’t be surprised. People still buy into Gary Null and that other huckster who was pushing coral calcium.

Apologies if this has already been mentioned, but Tuesday on the PRI/NPR midday news magazine ‘Here and Now’, Dr. Margaret Bauman (Mass. Gen’l Hosp., I think), in response to a neutral question from the interviewer, stated unequivically that there was no evidence linking either vaccines or mercury to autism. One for the good guys, because ‘Here and Now’ has a national audience, but my fear is that it’s to some extent ‘preaching to the choir’ with that particular audience.

DLC said:
“Why is it that some 11 years after Wakefield published his dishonest packet of crud he called a paper that he is still being seen as “The” expert on Autism and Autism spectrum disorders”
I don’t think he is.
As Orac mentioned Wakefield is well known in the UK (thank you very much Daily Mail- NOT) but not so much in the US.
I don’t live in the US so I will take Oracs word for that (the anti-vaccination stuff coming from the US very rarely mentions Wakefield, its usually the celeb crowd and that idiot Kennedy guy).
One thing that confuses me about the US situation is why there seems to be no trusted medical expert there who is nationally known and turned to by the media for advice on issues like this – someone like Robert Winston in the UK?

It’s kind of like how Fox News is the only objective (or, as they put it, fair and balanced) news channel on American television.

OK, I call Poe.

What you are seeing is the slow bending arc toward consumer empowerment in health care. With the advent of profiling services that “rate” doctors based solely on consumer comments, the shift of the tides away from large corporations and towards patient advocacy, and soon the ability to opt-out of vaccines. Macroscopically there is a paradigm shift and not all changes will be smart, good or healthy. Just changes.

“As Orac mentioned Wakefield is well known in the UK (thank you very much Daily Mail- NOT)”

I don’t think you can just blame the Daily Mail for this. The entire print media was responsible for perpetuating the MMR-autism story, long after it had been thoroughly refuted(hell, the Observer was still pushing it last year by distorting unpublished research to the horror of the researchers). Even Private Eye ran with it, in one of its occasional serious lapses of judgement.

Actually, I like this. Perhaps keeping the anti-vax people away from the general populace hasn’t been a very good idea. The doctors and the “researchers” that are profiting off of the fake autism/vax link will suddenly get inundated with new patients. When the state health departments get wind of it, there may be a whole whopping lot of indictments with various charges, such as willful harm to a child or worse.

Or maybe they will continue to play Randian politics with childrens’ lives and let parents play doctor.

Lets hope the risk is worth it and the backlash so massive that Wakefield and all his posers are washed away.

“For goodness’ sake, QUIT with the lying that only autistic children have gut problems…”

MI Dawn, unless you can find even ONE post of mine in which I even SUGGEST that ONLY autistic children have gut problems, I’ll have to conclude that the only one lying here is YOU.

Addressing your assertion that treating pain will result in improved behaviors, I’m glad we agree on that, but what makes you think that a non-verbal autistic child will be able to appropriately express how he is feeling physically? A neurotypical child would be able to say, “hey, mom, my tummy hurts!” The same can’t be said for a non-verbal autistic child, so he creates other ways of letting us know he is in pain, namely in the way of self-injury (can you say endorphin release?) and/or aggression. Even some higher functioning autistic children are unable to express how they feel physically.

Unfortunately, what happens all too often when a self-injurious and aggressive non-verbal autistic child presents in a pediatrician’s office, is that the parent is given a psych referral. The idea that pain might be the cause of the behaviors is usually not even considered.

Hi MI Dawn –

However, THEY ARE NOT SPECIFIC TO AUTISM!!!!! If a child is ill with gastric problems, then they need treatment. They don’t have mythological “measles” in the gut. They have allergies, IBS (which my own child has), or some other illness. Treat the illness.

It is not a coincidence that families travel thousands of miles to Thoughtfull House for treatment; for whatever reason, their children aren’t being helped locally. People are seeing Krigsman and Jepson precisely because no one else is willing to treat these illnesses. Jen would seem to be an excellent example of this, she claims that the vaccine angle bothered her, and yet, they still felt the need to travel widely for help.

No one says they shouldn’t. Any child who is in pain will act out. Make them feel better and they will behave better. This is NOT specific to autism. Then, once they are feeling better, work with the autistic child to learn and develope. For goodness’ sake, QUIT with the lying that only autistic children have gut problems, or that they are ANY different, except for developmentally, than other children.

I think you would be hard pressed to provide an example where Jen, myself, or anyone has made the claim that only children with autism have gut problems.

As towards your other claim, unfortunately, it is straightforward to provide evidence that children with autism are much, much different than other children in ways other than developmentally.

For example, children with autism have been shown to have much higher levels of MIF than children without autism, an immune messenger known to be associated with increased risks of a variety of inflammatory conditions.

Macrophage Migration Inhibitory Factor and Autism Spectrum Disorders

The same chemical, MIF, has been found to be associated with a diagnosis and clinical presentation of IBD.

Overview of the role of macrophage migration inhibitory factor (MIF) in inflammatory bowel disease

the past two decades, we have extensively studied MIF’s pathophysiological roles in human diseases, and have accumulated evidence elucidating its molecular mechanisms in the pathogenesis of immune disorders and inflammatory diseases, such as rheumatoid arthritis and inflammatory bowel diseases (IBD). In a study of IBD, we demonstrated for the first time that anti-MIF antibody suppressed the degree of dextran-sulfate sodium (DSS)-induced colitis, indicating its potential therapeutic use for IBD patients. Following that report, a number of researchers, including us, clarified that MIF was profoundly involved in various gastrointestinal disorders, such as hepatitis and pancreatitis.

We know that MIF promoter regions are associated with autism. Likewise, the Pediatrics paper showed increased MIF ciruclation, and correlations between MIF levels and autism severity across several measures. The evidence in favor of a relationship between MIF and inflammatory conditions, including gastrointestinal disorders is difficult to overcome. Unless we can conceive of some mechanism by which MIF does not exert this effect in the autism population only, why shouldn’t we be able to say that children with autism are different than other children in ways other than developmentally?

– pD

It is true that it’s very hard to tell what’s causing a non-verbal child distress. That doesn’t mean you should shove an endoscope down all of them. I don’t doubt that you are having your child treated for genuine gut problems. But the phrase “autistic gut” is meaningless; I have seen no reason to assume a connection between gut problems and autism. That phrase, “autistic gut”, is why people think you’re following Andrew Wakefield into the premise that there is a connection between autism and gut problems, despite the fact that the only evidence is Wakefield’s own discredited study.

If we’re going to talk anecdotes, my family has a relatively high rate of gastric problems *and* learning disorders (at least one member of each family unit suffering one or the other), and there does not seem to be a correlation between the two. For instance, the only person in my family with celiac sprue is probably the most “neurotypical” person among us. My mother has a whole host of gastrointestinal and hormonal complaints, but is “neurotypical”. I have ADD, and also GERD, so I’m an example of developmental and digestive issues going together. But it appears to be coincidental; two of my brothers have neurological problems (ADD in one, autism in the other) but no GERD, and the other brother is neurologically normal but has GERD.

So it sucks that non-verbal autistic children have a hard time getting a proper diagnosis. That truly sucks, and I sympathize with you over that. What folks here are objecting to isn’t that. We agree; it’s awful that autistic children don’t always get the right care. What we’re objecting to is the idea that gut problems cause autism (or are comorbid in most cases), and therefore all autistic children need colonoscopies, endoscopies, and other uncomfortable, invasive procedures.

“That doesn’t mean you should shove an endoscope down all of them.”

Calli, you lose credibility when you make overly dramatic statements such as this. I can assure you that endoscopes are not “shoved” down every child that walks into Thoughtful House. There are many other ways that gut issues can be treated non-invasively, and all of them are exhausted before a consult to Dr. Krigsman is made.

The Snyderman exchange with Lauer should give us some hope. We have started to see some mainstream reporting “get it right” recently. Fingers crossed.

[email protected]

I once encountered the US version of a documentary* that I’d previously seen on the BBC. The American channel (production company?) had felt it necessary to revise the narration and replace Robert Winston as narrator…

…with Alec Baldwin.

So, no, there probably isn’t anyone.

* I think it was Walking with Cavemen – but whatever it was, neither version was stellar.

@Dr.Wonderful
In a perfectly free market, the quality of care would have to be completely equal across the board. We already know this is not the case. Some doctors are just better at their craft than others. But we would also need to have consumers who were well-informed about the products and services they receive. Given the level of scientific-illiteracy in our current society, and the complex nature of understanding medicine in general, we will never have a consumer base that is sufficiently informed to truly shape all medical policy and delivery.

We’re not just seeing changes. In my opinion, we’re seeing people destroying the system from the inside (starting with the erosion of herd immunity — who knows where it’ll go from there). Surveys repeatedly show that physicians are the most trusted professionals we have in society, but given the current social climate, I have a very hard time believing it.

I hope you are wrong; I like Matt Lauer, he is one of the only morning personalities on TV that I enjoy. He is sharp enough to play Wakefield and make him and the anti-vaccine movement look foolish. He also has a young child, and has a personal interest in being on the right side of the issue. If he stokes the ani-vaccine fires, however, I will sadly tune him out.

@Heather

He also has a young child, and has a personal interest in being on the right side of the issue.

If the program turns out going against Wakefield and Thoughtful House, you’ve just given the anti-vaxers a cause for crying “bias!” 😛

Unless we can conceive of some mechanism by which MIF does not exert this effect in the autism population only, why shouldn’t we be able to say that children with autism are different than other children in ways other than developmentally?

Because this is kind of a straw man. We know, for example, that many people with autism are different genetically. In some cases, these differences are large, with big chunks of DNA missing. So we expect that there will be lots of differences, many of which will probably have little to do with the symptoms that define autism. So correlation simply is not very informative. It can be very hard to distinguish causes from consequences.

For example, the GI system is very sensitive to stress. And autistic individuals frequently experience a great deal of stress in dealing with the world. So do some autistic people experience digestive problems because they have something wrong with their GI systems? Or just because they are upset a lot of the time?

The most worrying thing about NBC’s project is that Wakefield required that NBC remove it’s medical editor, Nancy Snyderman from the program, and substitute her with Lauer. NBC immediately agreed. They also agreed not to present most of Deer’s findings.

Make no mistake, this is no investigative special.

@NBC in the know: can you provide a citation for that bit of info? It would be an alarming concession indeed, but I find it odd that the Thoughtful House letter doesn’t mention it, as it would seem to be a real victory for their side.

Shouldn’t the fact that they don’t include the network’s medical editor (if that is indeed true) set off bells and alarms all over?

If it is true that it was at Wakefield’s insistence, then shouldn’t those bells and alarms go off in the network itself?

And how could Nancy Snyderman let this go unchallenged? The network is doing a special on a medical issue and not including the medical editor?

Perhaps NBC’s resident ignoramous was excluded in favor of Lauer was because she’s both a vaccine zealot and a high functioning moron, who, when discussing vaccines becomes so excited she becomes unable to string together a coherent sentence, famously calling pertussis “an easily to die from disease.”

In an archetypical revelation of her profoundly staggering ignorance she states in regards to pertussis,

“We nearly wiped it out but we’ve become complacent and now so complacent such that in 1994 there were about 1000 cases of whooping cough in this country a decade later 26k cases”

How Nancy did we become so complacent when rates are at record highs? And how Nancy can you be so unaware of the real reasons behind the so-called pertussis resurgence?

Future Microbiol. 2008 Jun;3:329-39
Factors contributing to pertussis resurgence.
He Q, Mertsola J.
Pertussis Reference Laboratory, National Public Health Institute, Kiinamyllynkatu 13, 20520 Turku, Finland. [email protected]
A resurgence of pertussis is observed in highly immunized populations. Many studies have shown that the causes for the resurgence are multiple, such as increased awareness of disease, use of better diagnostic tools, improved surveillance methods and waning vaccine-induced immunity.

Pertussis resurgence in Canada largely caused by a cohort effect.
The sudden increase in pertussis incidence in Canada can be largely attributed to a cohort effect resulting from a poorly protective pertussis vaccine used between 1985 and 1998.

The science and fiction of the “resurgence” of pertussis.
Cherry JD.
Pediatrics. 2003 Aug;112(2):405-6. No abstract available.

Weak vaccine and awareness Nancy. Not Complacency.

“The most worrying thing about NBC’s project is that Wakefield required that NBC remove it’s medical editor, Nancy Snyderman from the program, and substitute her with Lauer. NBC immediately agreed”.

Good for Dr. Wakefield. Snyderman has shown her colors (agree or disagree with her). She certainly couldn’t be seen as impartial to the issue so how could she be involved in the segment? You have to agree with that, right?

Snyderman is a huge Pharma Ho. To see her shill for the Swine Flu vaccine is funny (and sad…)

Sid – irrelevant ranting

Snyderman is NBC’s medical editor. If they don’t think she is appropriate for medical stories, then they should not have her as editor.

So Nancy Snyderman is biased because she agrees with the vast majority of medical doctors and her views are consistent with the science to date? That’s rich.

I agree with others who are worried that nothing good can come of this exposure for Wakefield. Just putting him on television elevates him. Uggh.

She certainly couldn’t be seen as impartial to the issue so how could she be involved in the segment? You have to agree with that, right?

No.

“Impartial” does not mean “both sides are equally possible.”

If you have a nut claiming that 2 + 2 = 5, do you have to find someone who doesn’t know math to interview them?

Ah! Ye ol’ “Snyderman is a pharma shill, aka Ho,” huh #44?

Let me guess. You must be wearing one of these
http://www.zazzle.co.uk/ubama_obama_nazi_tshirt-235983837919582943
while you type away, eh?

So, you think you’ve increased the level of skepticism about Snyderman? Actually, you haven’t. There is that little thing called the task of actually using evidence, logic, and sound arguments to refute what she says.

Of course, that’s not what cranks do.

Whenever I read accounts of parents who have to take their children to Thoughtful House because nobody else will treat them I want to know which hospitals turned them away, which doctors refused treatment. Have any of these parents made complaints against these hospitals and doctors? Is there any documentary evidence to back up these disturbing allegations? Given that over 5000 families of autistic children were recruited to sue for vaccine injury, are any of them sueing these health professionals for malpractice?

They don’t “refuse” to treat them. They simply “refuse” to offer a magical cure in attempt to sell hope. They “refuse” to lie to parents and sell them at best ineffective and at worst dangerous treatments. Alot of people confuse “refusal” with “didn’t tell me what I wanted to hear”.

Sadly, this interview is already making the rounds. Local anti-vaxers are already excited that they might get some “really good information” out there, aka “what they want to hear”. There is no way Wakefield would have agreed to this if the deck wasn’t heavily stacked in his favor. I would feel certain that a great deal of information about his research was deemed “off limits” for him to agree. It’s not like he has a track record of debating his “findings” in open forums.

First, I’ll apologize for my over-the-top ranting. I shouldn’t comment when I am frustrated about other things. Jen, I acknowledge that you have reasons to be annoyed, if the doctors treated your child as you say they did. But, can I ask for one thing? Can you give 5 positive things about your child? In all your postings, I have never seen you post something positive, only the negative.

“Whenever I read accounts of parents who have to take their children to Thoughtful House because nobody else will treat them I want to know which hospitals turned them away, which doctors refused treatment. Have any of these parents made complaints against these hospitals and doctors?”

Okay, I’ll give you an example of the non-treatment and outright hostility we received from our son’s pediatrician regarding his gut issues.

Since we were under an HMO, we needed the approval of our primary care manager in order for insurance to cover the cost of the elemental formula that TH recommended for him. She wanted to wait until after he was scoped before she would approve it, even though there was already laboratory data, that our insurance company felt was sufficient enough to warrant use of an elemental formula, but a physician’s order was needed, so we were forced to pay out of pocket (at around 1,000 per month). I figured I’d worry about reimbursement later.

However, when I brought her the photographic evidence from my son’s endoscopy, as well as the biopsy report, she took one glance at it, informed me that in her opinion, Dr. Krigsman is a “quack” and that she has “no faith” in him. She wanted him to be seen by a “real” gastroenterologist, and said, “I wonder if he would get the same results?” When I pointed out that the “real” gastroenterologist that we were referred to agreed with me that my son should be scoped by Dr. Krigsman, and even wrote a letter to our insurance company in order to gain authorization for the procedure (this was after we switched to non-HMO insurance), she had the gall to imply that I was LYING. Not even his immediate and sustained improvements in his behavior were enough to change her mind. She informed me that autistic kids show improvements in behavior sometimes, no matter what is tried. She even sarcastically remarked, “you could smear mayonnaise on an autistic kid’s face, and they’ll show improvement in behavior.” (eye roll)

No, there was no changing her mind. She had read AFP, and is now a self-proclaimed expert on autism. She then very coldly informed me that if we were going to continue to see Dr. Krigsman, that we would need to find a new pediatrician, and showed us the door.

There’s a lot more to that story, that I don’t want to get into, but I think you get the idea.

So…not only do we have these difficulties with our autistic kids, we have to deal with condescending crap from the very people we should be counting on for HELP.

And, yes, you can bet I filed a complaint.

Jen
I asked for details of parents who were refused treatment before they went to Thoughtful House. Your account of your pediatrician’s behaviour is disturbing. I hope it is resolved. But I do not want to get into personal stories here. I am interested in cases that are a part of the public record.

Hi Trrl –

Because this is kind of a straw man. We know, for example, that many people with autism are different genetically. In some cases, these differences are large, with big chunks of DNA missing. So we expect that there will be lots of differences, many of which will probably have little to do with the symptoms that define autism. So correlation simply is not very informative. It can be very hard to distinguish causes from consequences.

I’m not sure we are talking about the same thing. In this instance, I wasn’t talking about causing autism, but rather, can we address the notion that there is no difference between children with autism and children without besides developmentally? In any case, it does strike me as funny how calmly this particular ‘genetic difference’ is glossed over. I wonder if this is because this particular difference is highly associated with autoinflammatory conditions.

Have you read the Pediatrics MIF paper? Several measurements of behavioral severity correlated very strongly with circulating MIF levels. If the findings were random, it was a string of random findings that happened again and again by looking at values by a variety of measurements.

We know that having a diagnosis of autism makes you more likely to have increased levels of MIF. Genetic analysis and clinical measurements both indicate this. Unless having autism is making you have promoter alleles, I don’t think we have to worry to much about correlation style problems. The fact that autism, and IBD are multifactorial does nothing to change this.

Likewise, the relationship between MIF and inflammatory conditions like IBD seems very solid.

Look at it this way, if we had chart values that only listed MIF values, but said nothing about autism diagnosis, we could still make predictions as towards if a patient was more or less likely to have IBD or other gastrointestinal problems. It just so happens, when we include autism diagnosis, people with more MIF also have autism more likely that people with less.

For example, the GI system is very sensitive to stress. And autistic individuals frequently experience a great deal of stress in dealing with the world. So do some autistic people experience digestive problems because they have something wrong with their GI systems? Or just because they are upset a lot of the time?

We are in complete agreement! However, this speaks towards my point in my opinion; one set of children (autistics) are known to experience a great deal of stress in dealing with the world; and we know that this physiological response causes problems with digestion. If causation is not our measurment of interest, but instead, rather, are there differences other than developmental between autism and non diagnosed, the answer again seems clear.

– pD

“Can you give 5 positive things about your child?”

1)He has the most stunning green eyes and long eyelashes. He is absolutely beautiful.

2)His smile is sweet, and his laughter infectious.

3)He is always nicely dressed, because he wears what I pick out for him. I do not need to worry about him going through a tattoo or nose-piercing phase.

4)He loves cats.

5)He is smarter than most people realize, and I am grateful to him for everything he has taught me.

There is more, but you only asked for five, and my time is limited.

As a pediatrician, I am not optimistic that this will be helpful. I was interviewed by three different expectant mothers in the last few days (we often meet the new parents before the birth). Each one of them had questions about vaccines and were apprehensive about autism.

I share Orac’s doubts that the facts and science behind this manufactured controversy will be presented as “the facts”. Often, the science is brought down to the level of the pseudoscience as if they represent two equal and competing positions. The science on this issue has been done to death. It has become akin to the Evolution vs. Creationism “debate”.

I did my best to present the science to my the new parents. They seemed relieved and gracious for the information. I hope that this does not undermine their confidence.

Jen’s primary care doctor was right. Krigsman has a history of running afoul of medical boards, and his “research” is generally mediocre and unconvincing. Most of this pet theories are as discredited as Wakefield’s.

Why a legitimate gastroenterologist would send a patient to him is beyond me.

Jen,

Okay, I’ll give you an example …

I’m sorry to hear about the difficulties with your pediatrician. I like to think that some of us are better than others perhaps in trying to help parents create a ‘game plan ‘specific to your chid .I’m sure that this isn’t your only negative association with doctors in general, but if you can remember that you didn’t have a problem because doctors are jerks, as much as perhaps you had a doctor who happened to be one. As society goes, so goes any subsegment of the population, including doctors; some great people, some idiots,I’ve met many for myself I wouldn’t give the time of day outside of a professional setting.It is upsetting to hear what could have been made easier for you wasn’t.The first unspoken rule is to listen to your subspecialists and object only with a damn good reason.

after seeing a-non’s post , no comment, don’t know enough of Krigsman to comment directly; I think the primary may have communicated more effectively in any case.

I feel your pain Jen.
Unless your child has a specific condition that was taught in medical school, most doctors are clueless. Or they are scared to treat an area in which they have no expertise.
We’ve jumped from doctor to doctor over the years. The only remedy that was offered for my autistic son’s gut issues were Miralax. For life.

And people wonder why parents are losing trust in the medical community.

Yes, I just got told to wake up and stop being brainwashed by a friend who unfortunately has young children in public schools, re swine flu vaccines. Because you know, some random website that argues that the government owns pharmaceuticals and some random journalist in Austria are far more believable than peer reviewed medicine, because supposedly the US government owns most of the healthcare stock anyway (I’m afraid my friend is going a little bit insane, and taking his family right along with him…)

(Oh, and my son does have ‘gut’ issues. they were diagnosed as disaccharidase deficiency – so a change in diet was in order for him, but it wasn’t caused by any vaccine, jut his genes)

Just read through the comments. Some autistic children do need endoscopies. Not because of the autism, but because of GI issues. My son has chronic diarrhea. After getting no where, an endoscopy with the purpose of obtaining a sample for biopsy was required. That’s when we learned he had the extremely rare condition of disaccharidase deficiency, and that he lacks all disaccharidases, rather than only one (lactose intolerance is a form of disaccharidase deficiency).

The program might just be a game changer

In other words, they think that their “science” is best promoted via the media, presumably before they can’t succeed via scientific publications… If they can’t get the approval of scientific peers, then resorting to by-passing them and blowing a trumpet to the media is pretty low, basically a tactic admission of failure to my mind.

Please do not attempt to contact them prior to the broadcast.

Oh, come on. Scared of objective criticism spoiling your party?

I agree that the MSM’s idea of “balanced” is tired, old, incorrect and badly in need of being replaced.

@13 (Jen), these children are most definitely not being ignored by medicine (although that is probably a common “sales pitch” from some circles), what is being, and should be, ignored is unsound practice and unsound science.

Out of curiosity, can anyone provide an update on the BMA hearing?

I understood it should be concluding about now.

Offit looks like he totally takes down wakefield in this full interview from what they showed in the preview on the today show. Offit destroyed every point Wakefield made, and all of the graphics used in the segment were pro-vaccine/science and headlines against Wakefield’s work. Offit also mentioned the disease outbreaks and deaths last year from VPDs, specifically mentioning the three hib deaths in southeastern Pa and the two in Minnesota.

Jen,

From your account, it definitely sounds like that doctor’s manner was completely inappropriate, and I would definitely be inclined to file a formal complaint about it.

In terms of the facts, though, she was entirely correct. Krigsman IS a quack who shouldn’t be trusted, she shouldn’t prescribe elemental formula until and unless SHE’S convinced it’s warranted (doing otherwise would be quite unethical), and autistic children DO improve over time regardless.

Aj — coincidentally, I was just looking at that today. The “fitness to practice” hearings for Wakefield et al. continue through today (the 28th), but there don’t appear to be any days of testimony scheduled for September, so perhaps we will actually get a ruling soon.

…If anyone knows anything else, please share…

“In terms of the facts, though, she was entirely correct.”

No, she was not. Her decision was based solely on her *opinion* instead of the evidence that was presented, which makes her no better than Wakefield.

Are streaking nodularity and circumferential rings in the esophagus normal findings? No they are not, and even a layperson could look at that evidence and conclude there was a problem, in addition to the laboratory evidence of occult blood in his stools and multiple food protein allergies. She does not have the knowledge or expertise to go over the head two highly qualified gastroenterologists and make decisions based on emotion. She was downright hateful, and it took every ounce of my self-control to keep from leaping across the room and clawing her eyes out.

Fortunately, we are no longer with that HMO, so her “opinions” are no longer relevant.

Incidentally, Jen: Krigsman has been the subject of disciplinary action in both Texas and Florida due to dodgy dealings (http://www.circare.org/pd/krigsman_20050916.pdf). He genuinely does NOT have a good medical reputation. I understand frustration and desperation driving you to anyone who promises to take you seriously, but there is a danger implicit in this.

Doctors and scientists who are sure of their practice and data can be extremely brusque and dismissive, believing that “the data speaks for itself” and whoever doesn’t understand is simply not paying attention. On the other hand, people who are invested in unsupported treatments (or out-and-out fraud and snake oil) are generally aware that their data will not “speak for itself” — or if it does, it won’t say what they want — and so to ensure business they are sincere, sympathetic, helpful, concerned, friendly. And for most people, no, the data DOESN’T speak for itself, they lack the training and background that makes it intuitive for specialists; they are, in fact, looking for the human face of things and trusting it more.

But it’s one of the oldest truths in the book: con men MUST get people to trust and cooperate with them, otherwise they starve.

I think your ped could have handled it a lot better, but it is a frustration I’ve encountered in other doctors: seeing patients turn away from the harsh reality that modern medicine *can’t* fix everything or promise miracles, to follow quacks down the rabbit hole because quacks are sincere, appear helpful, promise help, “take people seriously.” This doesn’t mean that quacks are any less quackish or that the more science-based doctors are wrong about them, but yes, it has a huge feedback influence in the general public’s attitudes towards each, and the more mainstream docs get angry because they perceive actual harms resulting from it.

Working within the mainstream medical community, yes, it can occasionally be very difficult to get someone to try different diagnosis and treatment options. There is something of a larger caution about trying unproven and unsupported treatments, perhaps. This is not *always* a bad thing.

“That doesn’t mean you should shove an endoscope down all of them.”

Calli, you lose credibility when you make overly dramatic statements such as this. I can assure you that endoscopes are not “shoved” down every child that walks into Thoughtful House. There are many other ways that gut issues can be treated non-invasively, and all of them are exhausted before a consult to Dr. Krigsman is made.

You’re right, my choice of words was poor. What I meant was speaking to was the fact that Andrew Wakefield et al allege that autism is largely caused by gut inflammation, ergo, they feel that all autistic children should be worked up for gut issues. Yet diagnosing gut issues in a non-verbal child is extremely difficult. Most of the time, it does come down to an invasive test of some kind, because there’s really only so much you can learn from stool samples. (Celiac sprue is diagnosed by biopsy, which is obtained from endoscopy or colonoscopy. GERD is diagnosed after dangling a sensor down the esophagus for several hours to figure out what that upper stomach valve is up to. Diverticulums have to be directly imaged. Etc.) I worry about unnecessarily subjecting too many kids to these tests. It’s expensive, for one thing, and raising an autistic child can get costly anyway. But more to the point, it’s unpleasant, and autistic kids don’t tend to tolerate discomfort as well as other kids. Potentially risky, too. One of the kids in Wakefield’s original study wound up with a perforated colon, a known risk of colonoscopy. So the kid needs to have a good chance of benefiting from the test before they get subjected to it, in my opinion, and I have concerns that Thoughtful House is too quick to recommend invasive tests. They also sell it as a treatment for autism, based on Wakefield’s premise that autism is caused by gut inflammation, and there’s no evidence to support that — but since they sell it, there is a profit motive for them, and that’s reason to pause and think about whether they’re being truly objective when they profit directly from the diagnosis. (You seem to be skeptical of the vaccine manufacturers — and rightly so — because they’re in it from profit. The same skepticism should apply to Thoughtful House as well, which is also in it for profit.)

By all means, if a child has genuine gut issues, they should be treated. And certainly the child’s behavior will improve once they are treated, because they won’t be in pain anymore. And absolutely, digestive system issues tend to go undiagnosed for far too long, resulting in needless suffering. I’m not sure what the best solution for that is; I mean, gut issues go undiagnosed even in those who can speak for themselves. My aunt probably had GERD for decades (she certainly had symptoms) before she was finally diagnosed. Now she has Barrett’s Esophagus (an irreversible precancerous condition). I do think more research needs to be done into new ways of identifying these problems. It’s not going to be easy, and I don’t expect it to happen quickly. But heck, just thinking about how long it took to diagnose my cousin’s celiac sprue (originally misdiagnosed as meningitis) . . . she could’ve died, or had permanent intestinal damage. That’s scary to think about.

That Wakefield’s camp described the interview as “tough but fair” sets off alarm bells. To me, that is code for “Lauer lobbed softballs and perhaps, there were moments with minor discomfort”. I have no doubt that Wakefield would only be ‘persuaded’ to do the show if he had complete control over the questions. Something he couldn’t command for the OAP and coincidentally, didn’t appear at.

“There is something of a larger caution about trying unproven and unsupported treatments, perhaps.”

Ordinarily, I’d agree with you. In fact, it was that lack of evidence that kept me from using the DAN! protocol in the years since his diagnosis. However, my son does not have the luxury of time. He is 15 years old, severely autistic, with testosterone surging through his growing body, and a tendency to become quite violent.

I approach everything with caution, and I’m not in this for a “cure”. I expect no miracles. Chelation and HBOT do not interest me. The only thing that interests me is having him free from pain, and if he shows some cognitive improvements along the way, I’m happy. If he doesn’t, no worries. This is a quality of life issue for us.

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