That said, the first “test case” was the case of a young girl, Michelle Cedillo. It was heard in the Spring of 2007. And it may be coming to a close.

The docket for the Cedillo case has some recent entries that point to a decision being reached. On October 30th, the family filed notice that Petitioners Notice to Waive the 14−day “Waiting” Period. This is followed by an entry (for the same date, October 30th) concerning Petitioners Consent to Disclose.

Rule 18(b) of the Vaccine Rules states,

Decisions of Special Masters and Judges. When a decision of a special master or of the court is filed with the clerk, each party will be afforded 14 days in which to object to the public disclosure of any information furnished by that party

In other words, when a decision is given to the petioners (the Cedillo family in this case) and the respondents (the Department of Health and Human Services), both sides have 14 days in which to say, “I don’t want this made public in whole or in part”.

Since the Cedillo family have given consent to disclose, it sounds like this entry is in response to a decision. There isn’t anything in the docket for the 14 day period before October 30th, like a motion, that they could be responding to.

That was 10 days ago. Given that they waived a 14 day waiting period, one would expect that any decision should have already been disclosed.

It turns out that the HHS requested an extension of time to “respond or reply”. They filed this on November 3rd, and the motion was granted on the 6th.

As a check, a 14 day waiting period is mentioned in Rule 20(b)

(b) Responses and Replies. Unless otherwise provided by the special master or the court, any response or objection to a written motion shall be filed within 14 days after service of the motion, and any reply shall be filed within 7 days after service of the response or objection.

So, things are not so clear. The Cedillos could be responding to a motion (seems unlikely given their wording, using the word “disclose”). Also, the HHS could be responding to the decision (if that is what it is), and this could mean a delay before the decision becomes public.

More on the Autism Omnibus can be found in this summary by Every Child By Two.

As an aside from the vaccine debate, I think we all need to say, “Go Charlie!!!”. I’ve read about Charlie (and dad) and the bike rides, now I’ve seen it. Good job, master Chew!

Here’s the Today Show segment:

The part with Kristina shows up about Minute 4 of the video. Kristina discusses bike-riding Charlie on the Today show on her blog.

The first part, as you can imagine, is about Dr. Offit and the vaccine/autism question. This story starts by focusing on the controversy–centering on the anger that has been focused on Dr. Offit.

The middle section (again, about minute 4) has Kristina Chew and family.

There is a very interesting exchange at the end between Dr. Nancy Snyderman (who ran the piece) and Matt Lauer of the Today Show. Dr. Snyderman does a good job of keeping Matt Lauer from pushing promoting the idea that the question is “controversial”. Matt Lauer pushes the idea that it is controversial amongst parents, while Dr. Snyderman keeps to the theme that this topic is far from controversial in any real debate.

Kristina notes on her blog:

The vaccine-autism issue aggravates because it diverts attention from autistic children, from autistic individuals, and fixates on what (despite more and more evidence to the contrary) some believe is a cause of autism.

But, we play the hand we are dealt. Unfortunately, that hand right now contains the vaccine-debate. I, for one, am glad to see Kristina taking on the question in the public eye.

But, in the end, the important stuff–Go Charlie!

I rest my very tired head, every night…I say my prayers and thank God for giving me the ability to be these children’s Mother. I thank God for the blessings I have received. I thank God for letting me be Outnumbered…because, through my husband and my children, I have been more blessed than I can ever have imagined.

One event for the week was the publicity for the “Stop Jenny” website. This was picked up by PZ Myers’ Pharyngula blog (a very well read, non-autism blog). Respectful Insolence (also high-volume, non-autism blog) plugged the site as well. In the autism-blog realm, this site (autismlibrary.org) and AutismVox noted StopJenny.com as well. A website with a similar mission, the non-generation-rescue-non-Jenny-McCarthy rescueangel.org gives a discussion how there are adverse events associated with biomed treatmements.

StopJenny has broken out, even beyond the ScienceBlogs (PZ Myers), into Bad Astronomy, via SkepticDad.

Another event for the week was the Every Child by Two call for action. ECBT has its membership asking for the Oprah Winfrey Show to take a look at vaccines and the vaccine/autism question from a different perspective than they’ve done with Jenny McCarthy. We joined in the call, as did LeftBrainRightBrain and I speak of dreams.

Fat Doctor picked it up from I speak of dreams. It is always interesting to see how some of the autism topics are playing out amongst the non-autism community. The comments there range from the usual “there’s antifreeze and aborted fetal tissue” inaccuracies to a comment like this fraction of a message sent to Oprah:

Please consider providing a counter-point. Physicians, scientists, public health workers and legislators are working together to improve the health of our communities. Please give them the same voice you gave Jenny McCarthy. Consider having the mothers of children who’ve died from these diseases *in the last year* on to show the human cost of poor immunization rates. Consider bringing in the parents of autistic children who haven’t been “cured” by Ms. McCarthy’s plan… parents who are frustrated at the diversion of precious Autism research funding to red herrings like vaccination & heavy-metal-toxicity.

On the flip side, Respectful Insolence makes a good argument that approaching Oprah to do a show on vaccines and autism is problematic. A good discussion and a good-ratings TV show are very different things. It is likely (and something promoted by many who support Jenny McCarthy) that Oprah might try to make it a debate rather than a discussion by bringing people like Jenny McCarthy and doctors like Dr. Jay Gordon to the show.

Jenny McCarthy has already shown the tendency to leave good manners (as in shouting obscenities) or accurate discussions behind her when the cameras are rolling (she might do the same without the cameras, but I have not been there to see it). A good example of this is her discussion of her son dying after vaccination. I will never downplay the experience she went through. But, her phrasing has led many to think (and state on the internet) that Jenny McCarthy’s son had his seizure immediately following an injection. Based on the story (that his first seizure happened at home as he was waking up), this seems incorrect. It’s a misperception that should be corrected, yet Ms. McCarthy has not, to my knowledge, taken the opportunity to do so.

One a better note, I have to admit that I am a sucker for a cool blog-post title. I got pulled in by Runman’s 1st Annual halloween Hustle 5km Fun-Run. I spotted this link, talking about the Road-ID bracelet. I’ve been meaning to talk about those, and add something to the main site as well, for a while.

Kathleen Seidel’s Neurodiversity.com weblog has a new post up. That blog has a low volume but high impact. The posts are detailed and thorough. This post has to do with another case of overcharging by lawyers and experts in the Vaccine Court. The title, A Motion to Conceal, tells a lot. For the first time, a petitioner asked that the lawyer’s and expert’s names be redacted from a decision.

ABC, through their news and Good Morning America shows, has started “On Call Plus Autism“. This is a series of short videos on various topics in autism.

It turns out Drive Mom Crazy will be a on “On Call Plus Autism”. Another hub blogger was featured in the Good Morning America hour on autism that we’ve discussed before.

I try to end on a lighter note. This week, it’s from LeftBrainRightBrain, who report that an autistic adult has taken to reading Autism’s False Prophets on YouTube. Here’s the “commercial” for “Story Time with Darwin”"

Every Child by Two has asked its membership to “Please Take The Time To Contact The Oprah Winfrey Show”.  The letter is below.  Reprinted with permission–but I think they are happy to see this spread far and wide:

October 16, 2008

Please Take The Time To Contact The Oprah Winfrey Show

It has been quite some time since Every Child By Two (ECBT) has asked you to take action on an issue related to immunizations. I write to you today with an urgent request for your assistance in reaching out to the Oprah Winfrey Show to urge that she dedicate a show to the science behind the question of whether vaccines cause autism. More than fourteen credible studies have been conducted worldwide exonerating vaccines and yet the media and entertainment industry continue to frame this as a debate. ECBT and our public health partners have reached out to Oprah’s producers countless times without success. However, I recently had a lengthy conversation with one of the producers who recommended that we initiate a letter writing campaign by commenting within the Oprah.com feedback section of the website. This information is tabulated to determine whether there is enough interest to conduct follow up shows.

I urge you to take five minutes to fill out the Oprah Winfrey Show online form by following the link below. In your comments, please request that Oprah invite credible scientists and/or physicians to explain the science of vaccines to her viewers. We also would like her to invite parents who have suffered the loss of a child from a vaccine-preventable disease, and a parent of an autistic child who can speak on behalf of the many families that are frustrated over the continued focus on vaccines and their supposed link to autism and the therapies that focus on “repairing vaccine damage”. Please relate any personal experiences you may have with vaccine-preventable diseases or autism. In addition, please refer the Oprah Winfrey Show to Amy Pisani, Executive Director of Every Child By Two, for any follow-up questions. My phone number is (860) 443-1166.

And finally, please forward this to your family and friends and request that they also reach out to the Oprah Winfrey Show..

https://www.oprah.com/ord/plugform.jsp?plugId=215

Amy Pisani
Executive Director
Every Child By Two
(860) 443-1166
www.ecbt.org
www.vaccinateyourbaby.org

Oprah has given a lot of time to Jenny McCarthy as she has promoted her books and ideas.  Isn’t it about time that she gave some air time to the more standard view?

For those unfamiliar with Every Child by Two, their stated mission is:

To protect all children from vaccine preventable diseases by raising parental awareness of the critical need for timely infant immunizations, fostering the establishment of a systematic method to locate and immunize children, and providing convenient access to immunization services into the future.

Every Child by Two is behind the recent “Vaccinate Your Baby” campaign. The spokesperson is Amanda Peet. Here are a couple of the PSA’s that Ms. Peet has done:

Notice that its been “some time” since Every Child by Two asked for action.  Yes, they are taking this very seriously.  The lessons learned from the UK vaccine scares were very hard won.  I’m glad people are taking the potential for disaster here in the U.S. seriously.

Blogs have been covering Jenny McCarthy since her first book. There are also websites from established organizations which have information that counters much of what Jenny McCarthy promotes. But, recently there have been a couple of websites by the autism community itself which are seeking to correct the misconceptions.

The first is StopJenny.com. I’ve known about this site for a little while, but recently I saw it get plugged by some very high traffic sites:

Pharyngula
Respectful Insolence
AutismVox

From a comment on Respectful Insolence, by the authors of StopJenny.com

There are not two sets of rules. The author of the www.stopjennywebsite.com has been requesting critiques all along to make sure the information is accurate. The author then CHANGES the information when shown why any information is inaccurate. Others are not so willing to do so, and freely keep on spreading misinformation. As you can already see, the www.stopjenny.com website has already been corrected, and linked to better sources. Unlike Jenny McCarthy, the website does not propose cures, does not offer medical advice, and does not profit in any way. We are laypersons attempting to undo the damage McCarthy et al are doing. It’s the laypersons that get hurt the most by McCarthy et al. We continue to ask for critiques, appreciate the feedback, and will continue to make any necessary changes to fulfill our purpose to educated and protect those that are being duped by people profiting off of laypersons with books and other products that are promising fake cures. We continue to hope to show why Jenny is wrong. Please email information@stopjenny.com to help us with our purpose.

As an aside, Pharyngula “Poll Mobbed” a Jenny McCarthy web-poll recently. Just an example of how well-read that blog is.

A second site that has been showing up in Google ads recently is RescueAngel.org. No, it isn’t affiliated with Generation Rescue or Jenny McCarthy (as made very clear on the site). Instead, it is a site which gives a description of some of the examples of adverse events associated with “biomed” therapies and autism. Yes, there are times when biomed seems to cause harm. Most biomed therapies, though, are completely untested and there is no one reporting on the adverse events. So, who knows what could be going wrong.

On the one hand, people could (and have) argue that showing a division like this in the autism community is detrimental. If we don’t present a united front, it will diminish our ability to advocate effectively.

I am of another opinion: If we don’t police ourselves, if we don’t point out when segments of the autism community are acting in a reckless manner, we will be in much greater trouble when we try to advocate.

While the name “StopJenny” may sound amusing, it is no joke. Left unchecked, Jenny McCarthy’s “advocacy” will result in people dying from vaccine preventable diseases. It has already happened in the U.K.. Jenny McCarthy seems to be ignoring one of the real lessons to be learned from Dr. Wakefield.

This addition is sWell, written by Dr. Rahul Parikh. Dr. Parikh is a pediatrician with Kaiser Permanente, an HMO. He is based in Walnut Creek–about 40 miles east (and a little north) of San Francisco. Think Berkeley, go east over the hills, and you are in Walnut Creek.

sWell isn’t all about autism (and that’s a good thing!). But, Dr. Parikh has a fairly long history of taking on the tough questions about autism in the press and on blogs. He’s been a commenter on David Kirby’s Huffington Post blog posts. But, his activity with autism goes back farther than that. He’s been a semi-regular in San Francisco Bay Area news papers, often correcting statements made by Rick Rollens.

Here’s a few examples of his blogging:
McCarthyism (on, no surprise, Jenny McCarthy)
Deconstructing David Kirby, where he looks at David Kirby’s briefing in Washington D.C.
David Kirby Smacks Me Down, where he responds to a blog post David Kirby did on Dr. Parikh.

David Kirby was “smacking down” Dr. Parikh based on Dr. Parikh’s review of Paul Offit’s book, Autism’s False Prophets.

He also writes “Vital Signs” for Salon (here’s an example, non-autism column there), with many varied subjects. One that has the attention of the autism community is What the Poling autism case means.

As noted above, Dr. Parikh has taken on medical issues, including autism, in the press. In the San Francisco Chronicle, he has taken on issues such as using the internet for medical advice (Beware Dr. Google), obesity, and, well, autism. One article, The Truth About Autism, takes on issues such as vaccines and the “epidemic”. You can imagine with a title talking about “the Truth” about autism, while taking on these firmly held beliefs of some, he was not popular amongst the vocal constituents of the autism community in California. He has in the press also discussed parents who show up to doctor visits with their binders of papers in hopes of educating doctors with “The Truth”. To the groups of parents with binders of papers, filled most likely with papers from the journals “Medical Hypotheses” and “Journal of the American Physicians and Surgeous” and others written by the likes of Mark and David Geier, Dr. Parikh is, again, not popular.

But, science and medicine are not popularity contests. In a doctor/patient relationship, the doctor should be the expert. Patients should educate themselves, but, in the end, typically only the doctor went to medical school. Doctors should be open minded. But, so should patients (and their parents). If someone shows up at a doctor’s office with a binder of papers, the patient should accept the fact that some journals are not very good, and some research is just plain bad.

What Dr. Parikh is doing is not popular amongst the vocal segments of the autism community. But, it’s important. I thank Dr. Parikh and I wish there were more like him.

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