If this is what keeps a CDC researcher up at night, how would they ever keep a huge conspiracy going?

1 Sep

Since these stories have attracted many people from outside the autism community, let me start with a few things I’d like you to know.  I am not a science blogger.  I am the parent of an autistic child.  One with multiple disabilities, including intellectual disability.  While I try to stay as objective as possible in my discussions, these topics are personal to me.  Frequent readers here will know that the inequities in identification and services in autism, especially between racial and ethnic groups, is something that concerns me and is something I have long advocated to correct.  And this has nothing to do with the fact that my kid is mixed race (not mixed African American, but mixed race nonetheless).  I don’t think about that.  My kid is just my kid.  And that luxury comes because there are people who changed America and made it this way.  Still, equity means a lot to me; inequity bothers me a great deal.  I have upmost respect for those who have pioneered the civil rights we now enjoy and I abhor those who use race in order to sensationalize their message.

All this said, let me get this out of the way clearly right now: the CDC did not find that the MMR causes autism in African American boys.  The CDC has not been running some sort of experiment and allowing kids to be vaccine injured.

Many people have taken on the science–or better stated lack thereof–of Mr. Hooker’s paper.  And if Mr. Hooker’s paper has taught me anything, it’s that epidemiology isn’t something for amateurs, even ones with Ph.D.’s like Mr. Hooker and myself.  Sure, one can do some simple first passes, but there’s a reason why people get their Ph.D.’s in epidemiology.  Rather than have me go into the science and get diverted from what I really want to talk about, here are discussions by an Surgeon/scientist, scientist/writer  specializing in healthcare an epidemiology grad student.  When grad students are pointing out your very basic mistakes, this isn’t a close call.   Mr. Hooker’s paper is flawed. If you are so inclined, please go and read these.

Instead of summarizing the analyses of this re-analysis paper, let’s go to Brian Hooker, who wrote the re-analysis study, and William Thompson, who was an author on the original study and see what they have to say.

What did Mr. Hooker write in his paper?  The final sentence, the conclusion was “Additional research is required to better understand the relationship between MMR exposure and autism in African American males.”  Not, “we’ve shown that MMR causes autism” but “additional research is required”.  Of course he has since made much more sweeping statements.  But he wrote in the paper what he knew he could defend.  No one was going to read his paper and approve it for publication if he said “MMR causes autism”. Not because of some political reason.  He just didn’t have the data to make that claim. 

And here is a good time to point out: the CDC team did do additional research.  Both within the paper–the analysis adjusted for possible other factors, and other papers.

Now let’s look to Mr. Thompson.  It’s difficult here to discuss what he has to say.  Not because his statement isn’t clear, it is.  But because people tried hard to speak through him.  And by that I mean that Andrew Wakefield and Brian Hooker basically said, “We spoke to a whistleblower.  Here are some statements out of context.  And here’s our point of view, please believe that the whistleblower shares our view.”  As we have seen from Mr. Thompson’s own words, he was unaware that Mr. Hooker and Mr. Wakefield were going to release his identity or use his voice.   So he clearly didn’t see, much less approve, of the video that was produced to promote the movie.  So, what has Mr. Thompson had to say?  We have his statement here, with no analysis, no editorializing. I’d encourage readers to go through that statement for themselves.

Everyone will pull one or more sentences out of his statement for further analysis, but given the discussion here I want to pull out the one where he expresses his concern: “My concern has been the decision to omit relevant findings in a particular study for a particular sub­ group for a particular vaccine.”

That’s his concern.  Not “tens of thousands of African American boys were allowed to become autistic because we didn’t act.”  Not “there was massive fraud and a coverup at the CDC”. No, this result should have been openly discussed.

As a researcher with 30 years experience (yes, I started as an undergraduate student) I could go into a long discussion of both sides of this scientific debate and tell you about how I side with Mr. Thompson’s co-authors that this is not a strong result and there are very reasonable arguments for why social factors resulted in the higher calculated risk, and so it was appropriate to leave this out of the paper (it also would have been appropriate to leave in with a discussion in ). Let’s instead focus on the two simple words I just wrote: scientific debate.   Mr. Thompson appears to feel that this debate should have been opened up to the community, the broader scientific community, and I suspect and hope the autism community and the general population.  As a parent, an advocate and a citizen, I have to say I hold that sentiment.  That’s easy to say now.  Now that we’ve seen how cynically this result was used.  It’s easy to say we should have had this discussion 10 years ago and have this resolved and avoid this current PR campaign by Mr. Wakefield.

Can a researcher really be that troubled by the scientific debate behind a paper?  I can certainly see it.  I have over 100 publications to my name.  Some have been very highly cited. Some I am quite proud of. And out of all of those, the one that sticks out in my mind is one I never wanted to write.  There’s nothing wrong in it, but we held on to the results for years and instead of publishing them when they would have shown how far in front we were, they made it look like we were behind.  If it had been left up to me, we would never have published that. That’s industrial research.  So, yeah, I can understand on one level what Mr. Thompson seems to be saying.  Of course my experience is on a whole different level than that of a public servant doing research.  I didn’t have the responsibility Mr. Thompson has had and still has.  I can absolutely see someone feeling strong regret over holding back on a result, even one that his coauthors and he agreed to hold back.  

I don’t see Mr. Thompson’s regret indicating, as some have suggested, that he feels that the MMR vaccine has allowed a huge number of African American boys to become autistic.  What do I base this upon?  Mr. Thompson’s statement:

I regret that my coauthors and I omitted statistically significant information in our 2004 article published in the journal Pediatrics. The omitted data suggested that African American males who received the MMR vaccine before age 36 months were at increased risk for autism. Decisions were made regarding which findings to report after the data were collected, and I believe that the final study protocol was not followed.

He’s talking about the decision making process.  He specifically states that the data “suggested” an increased risk in African American boys.  He doesn’t say proved.  Not demonstrated. Certainly he does not say anything that can be extrapolated to say that the MMR vaccine is linked to autism in all groups, and while we are at it, all vaccines cause autism, as some advocates have portrayed this statement online.  And let’s take a look at another statement:

I want to be absolutely clear that I believe vaccines have saved and continue to save countless lives. I would never suggest that any parent avoid vaccinating children of any race. Vaccines prevent serious diseases, and the risks associated with their administration are vastly outweighed by their individual and societal benefits.

I wouldn’t make that statement if I felt that this statistically significant result meant definitively that autism could be prevented in African American boys. 

You know what I also don’t see in this statement?  Lie, fraud, cover-up, many of the terms that have been attributed to the Mr. Thompson when he was just being referred to as an anonymous whistleblower.  Now that he’s known, and has been apparently granted federal whistleblower protection, we aren’t hearing these terms.  We are hearing about a serious and important scientific debate.

People have tried to frame this, “since he feels so much remorse, since he’s stepping forward and risking his job” followed by one of myriad things this is supposed to tell us. Let’s remind ourselves of one point: it appears Mr. Thompson didn’t think he was stepping forward: he wasn’t planning on the fact that he was involved becoming public. Based on this, it doesn’t appear that his intent was to become a whistleblower.  I’m not trying to take away from his actions, just to point out that his focus seems to have been trying to get this result out.  He seems to have been guiding Mr. Hooker into doing the analysis so this result would be in the public domain and could be discussed.  

Given all that, ask yourself this simple question: if this is the sort of thing that really bothers a CDC scientist, if this is the sort of thing a CDC scientist would risk his job over, how could anyone expect that CDC would ever be able to keep a lid on the supposed conspiracy/cover-up that some people claim is happening in the CDC autism research program?

Think about that.  A single result, one which many people agreed didn’t need to be discussed, was held back and this CDC researcher struggled with that decision for a decade.  But he and his colleagues are just going along with what is supposedly the biggest cover-up in history?

I would then ask you to consider this: if Mr. Hooker and Mr. Wakefield really felt they had their “smoking gun” with this result, why did they resort to their race-baiting video?  Data and facts would have spoken much louder. And that video attack was obviously going to cost them in credibility.  Then we could ask, why did Mr. Wakefield and Mr. Hooker betray the trust of Mr. Thompson?  I’m pretty sure I have the answer to that: the image of a “whistleblower” was far more persuasive than the data Mr. Hooker was presenting.  And combining the “whistleblower” who wasn’t with playing the race card gave them an emotional hook that was much more powerful than their data.

Having brought up this ugly race-baiting video (I’d encourage you to watch it if you haven’t already even though it is ugly.  It is truly a step into the gutter for Mr. Wakefield, Mr. Hooker and Mr. Lewis), let’s address the questions that video poses.  Even though they are patently ridiculous.

Are the CDC engaging in a new “Tuskegee” experiment?  No.  Again, it’s sad to even grace this question with recognition.

But, then, why did Mr. Wakefield make this claim?  Well, I will say Mr. Wakefield was very shrewd, at least in the short term, to tap into such strong emotions.  The video was certain to enrage many people. And it got the re-analysis discussed. But while Mr. Wakefield was shrewd, even he must have seen that for many it would backfire immediately and in the long term this would eventually backfire for many more.  Eventually people start asking questions. 

It’s been long enough to start asking some of those questions.  Like, really, a Tuskegee experiment?  CDC are engaging in an experiment to allow African American boys to become autistic for some study?  And that would be because there are so few autistics that they need more for some study? (clearly not)  And, if there’s an experiment going on, why is it that one big issue right now is the lack of racial/ethnic minorities in autism research?  So, the CDC are allowing many more African American boys to become autistic for an experiment that they aren’t doing?

Of course the most obvious reason this strategy was only a short-term one was that eventually Mr. Thompson would speak.  And he has.  And he hasn’t said one word about this supposed “Tuskegee” experiment.

Let’s ask a very simple question: are we really supposed to believe that a civil rights pioneer who has devoted her life to people with developmental disabilities is running a Tuskegee type experiment? It is embarrassing to give this accusation credence enough to even address it. At the time that Marshalyn Yeargan-Allsopp was breaking down barriers, becoming the first African American to attend Sweet Briar College, the Supreme Court had yet to decide whether some states could continue to hold that marriages like mine were illegal. I live a life where I don’t even think about my kid’s mixed heritage and blended culture.  And I can do that because of people like Dr. Yeargan-Allsopp.  You can (and I’d say should) read her story online.  Being he first to attend and graduate Sweet Briar was tough.  She’d done more than enough but she didn’t stop.  She became the first African American woman to enroll in and graduate from Emory’s medical school.  Dr. Yeargan-Allsopp, if you ever read this know that I mean every word.  You are an example of what I see is best in America.  As are your colleagues.

Dr. Yeargan-Allsopp is just the most obvious example of how this whole mythos of a great CDC coverup is just without any merit. And that Mr. Wakefield and Mr. Hooker are fabricating stories that are not just insulting to the CDC teams, they are insulting to us in the autism community.  

The CDC are made up of dedicated researchers and staff.  People who have devoted their lives to areas of public health, like developmental disabilities.  People who apparently struggle for years over a scientific decision as to whether to include a result that is so far from a smoking gun that Mr. Wakefield had to embellish his presentation with race-baiting attacks and play on fear and emotion. CDC staff are people.  People with families.  Some with autistic kids.  I suspect there are some who are autistic themselves, and more are broader autism phenotype.

And Andrew Wakefield, Brian Hooker and the rest of their group are trying very hard to make you believe otherwise.  They are  trying to dehumanize these people.  If they had facts, they’d use them.  They don’t.  Plain and simple.  If they felt that these facts spoke for themselves, they wouldn’t have burned their “informant”.  They wouldn’t play to our emotions with this nasty, race-baiting attack. Believe me, I know how strong those emotions are and how effective this video can be.  It is a very cynical approach they are taking.  Mr. Wakefield’s team is trying to drag more parents into the world of hatred that he’s built.  All so they can claim that their ideas are right.  Ideas which even now, even with access to someone “on the inside” at CDC, have no merit.

By Matt Carey

12 Responses to “If this is what keeps a CDC researcher up at night, how would they ever keep a huge conspiracy going?”

  1. Monseñor (@AxelBlaster) September 1, 2014 at 13:20 #

    Outstanding!

  2. 2asdmom September 1, 2014 at 15:42 #

    I appreciate your point of view. My concern is this: Dr.Thompson reached out to Dr. Hooker over a 10 month period. Why would he do this? Why is his voice, sounding(on audiotape) anguished, supposedly lamenting that this was the lowest point in his career and he felt responsible? There is a lot more to this story. Yes, the CDC can and will cover up anything to do with vaccines. Remember Poul Thorsen, lead vaccine researcher who stole like a million dollars of CDC money. Nice guy…sounds ethical to me..oh, right his research is..but it is ok for him to steal? yes, emphasis on sarcasm. Why would I, as an autism parent, trust his research, yet you expect me to?

    There are very powerful forces out there trying to keep the status quo, a very profitable status quo. This is what I know: We live in a toxic world, filled with herbicides, pesticides, heavy metals, crappy food. We inject tiny newborns with unnecessary vaccines(Hep. B shot) without knowing what their MTHFR/COMT status is. Then we go on vaccinating them again and again-with vaccines that contain heavy metals like mercury & aluminium-yes mercury is in flu shots.Did I mention that a baby’s blood brain barrier doesn’t close up right away? You expect parents to adhere to a bloated vaccine schedule, with no recourse or accountability? A baby today receives more vaccines by 6 months, then it’s mom did by the time she reached high school.

    It is all about the tipping point, Matt. For some it is the Rhogam & flu shot-they are “born” with it. For others, it is a gradual progression. You have a fragile newborn who has a genetic susceptibility, like COMT and or MTHFR or other genetic mutations, and you throw toxic vaccines at them, what do you think is going to happen? 1 in 6 US children have a developmental difference-this is from the CDC, ironically. 40 percent of general US population has at least MTHFR mutation, so big deal. Well 10 percent has the double-and when you throw other mutations on the methylation pathways, you are playing with roulette. Because of vaccine ingredients, they are certainly a part of the problem.

    Concerns about vaccines & autism have been around for a long time-but the debate as we know it, started in 1999. My daughter was born in 2000. I know about Simpsonwood
    Excuse my sarcasm, but I am tired of so called medical experts, telling me what autism “isn’t” when they cannot tell me what “it is”. With over a BILLION dollars of federal research dollars spent over the last 10 years, with not ONE meaningful breakthrough to show for it.
    I just love the last sentence on all of these research journals/abstracts..”more research is needed” Oh, by the way, doesn’t it bother you that much of that BILLION dollar research was duplicated!
    You are advocating for the status quo to stay the same, and I would like the status quo to change.
    We can debate whether are not the autism rates are truly rising, but by the CDC’s own data autism is one in 68 now. Our kiddoes have comorbid conditions like seizures, gastro, mito dysfunction-Autism is not a mental health issue, it is a medical issue. When will our nation take it seriously? Whether or not, you agree with Dr. Hooker’s research paper, he is out there, stirring up the debate and leading the conversation, that many powerful people, like Bill Gates, Voice for Vaccines, CDC, just want us to stop. But, Matt, there are too many of us now. We are contacting our elected officials. We are uniting. We will not forget the terrible injustice of what has happened to our children, Even if the CDC whistleblower Gate quiets down, another tide will rise. You see, nothing has changed, so more and more babies will develop autism. More and more thinking parents will connect the dots. Thanks for being part of the conversation.

    • Sullivan (Matt Carey) September 1, 2014 at 17:50 #

      “My concern is this: Dr.Thompson reached out to Dr. Hooker over a 10 month period. Why would he do this?”

      I discussed that above.

      “Oh, by the way, doesn’t it bother you that much of that BILLION dollar research was duplicated!”

      It would if that were the case. It wasn’t. Read the GAO report. They don’t say the research was duplicated. They say they feel there was the “potential” for duplication. The fact is there are whole teams of people in each government agency working to insure there isn’t duplication.

      I pick this one example out because I know it quite well. Both the facts and how people misused the facts to spin something for political purposes.

      “Excuse my sarcasm, but I am tired of so called medical experts, telling me what autism “isn’t” when they cannot tell me what “it is”. ”

      Autism is not caused by “refrigerator” mothers. Even if we can’t say what causes autism, I’m quite satisfied we can throw that hypothesis out the window. Which is to say, we can certainly say what something is not before we can say what it is. Autism is not, for example, mercury poisoning.

      ” I know about Simpsonwood”

      So do I. I was shocked when I found the transcripts online. Shocked that people had so misrepresented what that meeting was about–people who were trying to sell me on autism as vaccine injury. It’s one of those things that showed me the autism-as-vaccine-injury advocates are rather liberal in how they treat facts.

      You can find my opinion on Poul Thorsen on this blog. There’s a search function built into wordpress.

      I could go on, but I will just say I wish you well.

    • Narad September 3, 2014 at 00:41 #

      Did I mention that a baby’s blood brain barrier doesn’t close up right away?

      Yes, right there. I suggest you actually learn something about the subject before making a similarly meaningless assertion someplace else that is not entirely credulous.

  3. reissd September 1, 2014 at 18:23 #

    Thank you. This is very helpful.

  4. beth jones September 1, 2014 at 19:42 #

    You do realize the are emails in which Dr Thompson clearly states there are sensitive and problematic results with this study before it was originally published? That he wanted to take his name off it? That he retained a lawyer when they were discussing which documents they would and would not make available for congressional hearings into this matter? That the protocol was ALTERED after they found this association with timing of MMR and increased risk of autism? Deny all you want, this does not sound like standard of scientific research that the public expects from public officials – it reeks!

    • Chris September 1, 2014 at 21:00 #

      Really? Where is this evidence? You are making some serious accusations, so you really need to back them up.

      Also, it seems that delaying the MMR was more of a problem than following the ACIP recommendations. Because the only affected demographic were African American males who had the MMR after the recommended time frame of fifteen to eighteen months.

      And how come the only affected demographic in Hooker’s paper are not the majority of autistic children. From Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010:

      Non-Hispanic white children were approximately 30% more likely to be identified with ASD than non-Hispanic black children and were almost 50% more likely to be identified with ASD than Hispanic children.

    • Chris September 1, 2014 at 21:31 #

      Another answer is in moderation. But you have made some interesting claims. Do you have the evidence to back up those claims?

      Especially since African American children are typically not diagnosed with autism as often non-Hispanic white children. Why would this study with just a few children overturn all of the other demographic surveys?

    • reissd September 1, 2014 at 22:48 #

      Where did Dr. Thompson say he wanted to take name off?

      You are referring to the 2002 email – it’s understandable that if the DOJ asks for documents, a worried scientist would want a lawyer, but in case you missed it, 2002 was before the publication of the paper.

      As explained above, there are professional reasons to exclude problematic results, and the evidence suggests these results were unreliable.

      It does reek. It reeks of Hooker and Wakefield taking advantage of Thompson, misrepresenting his statement, promoting conspiracy theories to scare parents from protecting children against disease, and doing bad science.

    • Sullivan (Matt Carey) September 2, 2014 at 06:38 #

      “You do realize the are emails in which Dr Thompson clearly states there are sensitive and problematic results with this study before it was originally published?”

      Yes I do. I could have included that as part of the discussion above, but I left that relevant point out. Because it supports what I’m saying and is redundant.

      It looks clear to me he felt the sensitive and problematic results are the higher calculated risks in the African American boys. That result is what bothered him. And it’s not that strong.

      “That he retained a lawyer when they were discussing which documents they would and would not make available for congressional hearings into this matter? ”

      Yep, I know that too. What made you think I didn’t? You did catch in that letter that Thompson said he turned everything he had over to congress. So, what did Congress say with everything? That was over 10 years ago. And a very antagonistic Member of Congress running the hearings. I don’t see that those data led to anything.

      The protocol was amended. Happens all the time. They added a second phase to the study. They didn’t report on race in the initial part of the study, which I believe is in the protocol and is likely what he was talking about. You did catch that I discuss this above, didn’t you?

      And, you think I’m denying where? I address all your points. In fact, these are pretty important to the conclusion I came to. This one decision was a factor that bothered Thompson for a decade. Tell me why we haven’t heard anything more dramatic from him or others? They are clearly dedicated. And they leak a small thing and ignore the huge item (evidence that vaccines actually do cause autism) that you seem to think is hidden? It doesn’t make sense. It just doesn’t. Let’s discuss this decision for what it is, but to extrapolate from that to this is evidence of a huge conspiracy is not only a giant leap, it goes against the data we have.

      • Sullivan (Matt Carey) September 2, 2014 at 17:54 #

        I will add, in a recent talk Mr. Hooker says it is this event–the non-disclosure of this preliminary result–that was the low point of his career.

        So, whatever else he has, if anything, to say has a lower impact that this event.

  5. Narad September 3, 2014 at 00:34 #

    Now that he’s known, and has been apparently granted federal whistleblower protection, we aren’t hearing these terms.

    Well, I’m seeing them, but anyway, that’s getting the law the wrong way around. First, the employer has to do something forbidden, and then you can invoke the Protection Act.

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