By the time the story gets back to you, it has completely changed.

Now imagine that people aren’t whispering, but instead commenting in the press or blogs. Imagine that instead of some nonsense story it’s about public health.

That’s basically what is happening right now. Dr. Andrew Wakefield, of MMR/autism “fame”, is apparantly repeating what he thinks he heard from people who think they understood what others have said and done.

Sound confusing?

Well, let’s start with Dr. Wakefield’s comment. It’s the end of the chain and the message has been very garbled.

Dr. Wakefield is quoted by the UK paper, the Sun . In this case, he has misquoted Dr. Healy and, I believe, mixed in some misquotes of Dr. Gerberding (head of the CDC) as well. Dr. Wakefield is quoted as in the recent news article saying:

Bernadine Healy, the former head of the US National Institute for Health, admitted they had altered evidence on the epidemiological studies conducted by the US Government to suit the official line. She admitted the evidence both the US and UK relies on is useless.

Where did that come from? Is there an interview with Dr. Healy, or statements by her that I haven’t seen?

I’ve commented a few times about how I felt Dr. Bernadine Healy’s assertions on autism research needed to be supported before published. First, I commented that Dr. Healy’s comments were basically unsupported assertions, and that they were not supported by statements from the Institute of Medicine. I tried to contact Dr. Healy, with no response. But, in reading her statements, I’ve never read anything that supports Dr. Wakefield’s version of what Dr. Healy supposedly said.

First off, even Dr. Healy has not said that the NIH or anyone altered evidence. If someone can point me to a statement by Dr. Healy that could even be misinterpreted to support Dr. Wakefield’s comment, I’d like to see it.

As an aside, consider what Dr. Wakefield is doing by invoking Dr. Healy’s former position as director of the NIH, then claiming that she “admits” they altered evidence. Dr. Wakefield is implying an official statement by an insider. This is why Dr. Healy had a deep responsibility to make sure her statements were clear and well supported, two things she did not do in her interview. That is why I believe she should step forward and make it clear that Dr. Wakefield’s comments do not reflect what she said.

Back to Dr. Wakefield’s comment–Dr. Healy did not state that the evidence is useless. She made comments that more studies should be done, concentrating on the “people who got sick” (or something close to that). Dr. Healy neglected to note that many studies already have looked at people with autism and, for example, whether they have persistent measles infections. And, that was before the Hornig study came in.

I believe that Dr. Wakefield here is mixing up Dr. Healy’s comments with a misinterpreted version of comments by Dr. Julie Gerberding. This isn’t to say that Dr. Gerberding claimed the evidence is “useless” either. However, Mr. David Kirby has tried (somewhat succesfully, I note with regret) to propagate that myth.

For the details, read Epiwonks analysis of the David Kirby’s first first and posts on this. (it’s worth taking the time to read through those on their own–not just as support of this discussion!)

David Kirby propagated a mistaken impression that Dr. Gerberding thinks the VSD studies (including that of Dr. Verstraeten) were flawed (read Epiwonk one and two)

We have Dr. Bernadine Healy who commented that she considers that the correct studies haven’t been done (but, they have, and more have been done since her statements.)

Somehow, these stories got repeated, mixed up and told to Dr. Wakefield who is now repeating a completely messed up version for the U.K. press.

After many generations of repeating the stories, they are hopelessly separated from reality. Assuming this is correct and Dr. Wakefield didn’t create this story himself, who is at fault? Dr. Wakefield for not checking the quotes from Dr. Healy? The reporter for not checking the validity of what Dr. Wakefield said? Dr. Healy for making unsupported assertions? David Kirby for making what are fatally flawed and misleading blog posts?

Assigning blame is actually secondary–how do we keep this sort of misinformation from propagating?

I just saw this document, Clear Answers & Smart Advice About Your Baby’s Shots by Dr. Ari Brown. This is one that is definitely going on the main autismlibrary.org website right away. It takes a huge amount of information about autism and boils it down into a very brief, very readable document.

It goes through what is autism, to why is it on the rise, to issues like mercury and MMR…it covers pretty much everything you think is a question a person might ask about autism.

It is troubling that She even has to address this question:

There’s so much anti-vaccine stuff online—it’s hard to know whom to believe. Can doctors be trusted on this issue?

Most pediatricians are ALSO parents—and docs dedicate their life to protecting kids. If I ever thought vaccines were harming kids, I’d change what I do. I vaccinated my own kids and would do it again in a heartbeat. If you have any doubt about vaccinations, just ask your pediatrician if she vaccinated her kids.

It is a great response. But, again, sad that the question even needs to be addressed.

This document may not get a lot of acceptance in some circles. Take a look at the concluding paragraph:

Vaccines work. And they are safe. Rather than demonize vaccines, we (doctors, parents, researchers, the government) should put our time, effort, and money into researching the CAUSES of autism and the best possible treatments.

Yes, I agree with it, but I could bet money on some groups disagreeing (strongly) with that statement. That is unfortunate. We need to learn the real causes of autism and the real treatments.

So, again, it’s worth taking a look at the document. Keep in in reserve for when people ask questions. A lot of the answers are in there.

The basic idea is simple: try to recreate the work of Dr. Andrew Wakfield, whose 1998 and 2002 studies are what has really fueled the idea that MMR and autism are linked.

In the present study, they looked at the subset of kids that one would expect to show the MMR/autism link: kids who had regressions, have gastrointestinal (GI) problems and have autism. For controls, they used kids with the GI problems and no autism.

Hornig et al. looked at the timing of the MMR and the regression. They also looked at whether measles virus was detectable in the intestines of the kids (both control and autistic). Given the nature of the debate–where any study is challenged along many lines–they used three different laboratories, they used multiple research centers (including Dr. Hornig, who wrote a paper favorable to the thimerosal/autism hypothesis) and they included parent advocate Rick Rollens in the consultations.

Given all that, what did they find? To put it simply: regression and GI problems are not found after the MMR shot. In addition, measles virus was found in only one case and one control subject, and that was at levels far below what was reported before.

The study was somewhat small–25 subjects and 13 controls. This has been used as a criticism, along with the idea that only 5 of the subjects underwent regression following the MMR shot. The number was limited by the fact that the subjecthttp://autismlibrary.org/blog/wp-admin/post-new.phps were chosen only if they were going to undergo a colonoscopy for other reasons. I.e. that invasive procedure wasn’t applied as an experiment only. The fact that only 5 of the 25 underwent regression following the MMR was a result, not a limitation. This demonstrates that regression isn’t correlated with MMR vaccination.

One thing that needs to be addressed in the criticism: this paper did not happen in a vaccuum. There are 20 references given to studies which also refute the autism/MMR hypothesis. It was good enough to convince Rick Rollens. I though it would be hard to find a tougher sell than Mr. Rollens, but the criticisms show that I am wrong there.

LeftBrainRightBrain
Orac
Science Based Medicine
AutismVox
Black Triangle
Action for Autism
Aetiology
Blog around the Clock

LeftBrainRightBrain has audio from the press conference, which is interesting.

And, there is some discussion of the criticism as well as covered by
AutismVox
LeftBrainRightBrain
black triangle

Let me know if I’ve missed some links.

Mady Hornig, Thomas Briese, Timothy Buie, Margaret L. Bauman, Gregory Lauwers, Ulrike Siemetzki, Kimberly Hummel, Paul A. Rota, William J. Bellini, John J. O’Leary, Orla Sheils, Errol Alden, Larry Pickering, W. Ian Lipkin, Mark R. Cookson (2008). Lack of Association between Measles Virus Vaccine and Autism with Enteropathy: A Case-Control Study PLoS ONE, 3 (9) DOI: 10.1371/journal.pone.0003140