Six years ago next week my youngest son got his 18 month vaccinations, DTaP, Hep B, Polio, Pneumo and Hib and then regressed into autism. Almost a year later I started this blog for the simple purpose of keeping a public daily journal while my son went through treatment on which there was not a lot of public information. I thought that others could read about what our experience was in evaluating whether or not it might be useful for their child.
But what began as a mother's journal has turned into a reaction to and an act of rebellion against the widespread corruption of the institutions whose stated purposes are to protect the safety, health and rights of individuals, to guide them in good decision making and to get to the truth of a matter and inform the public so that they can make wise choices; and the dishonorable behavior of many who man those institutions.
Because once upon a time I was a trusting consumer of the science and medical industries, and even a participant in them. I followed what I believed was their earnest advice, because I believed that they were working in my best interest, that they were working in the best interest of my children, and that they were upholding the basic standards of their professions that would protect them from gross error in their rendering their opinions.
I vaccinated my children as I was told to do.
I was very, very wrong to blindly trust those sources. Following their advice turned out to be as wise as taking a sledge hammer to my son and my family.
After my son's regression, I was told by all the supposedly reputable, vetted sources that I looked to that my son's regression could not have been caused by his vaccines. But that just didn't seem right to me, so I started reading. Vaccine package inserts, a few studies, AAP/CDC web sites, a few media accounts and I had a question that I could not find an answer to. That question was:
"If the Hepatitis B vaccine is known to cause Gillian-Barre, an autoimmune disorder where in the the immune system attacks the central nervous system, then why can't it cause autism, an autoimmune disorder where in the immune system attacks the central nervous system?"
So I printed out the vaccine package insert, highlighted the relevant parts and took it to my pediatrician, who didn't read it and didn't answer my question. But he did tell me to go ask the American Academy of Pediatrics, who, I quickly learned, does not answer vaccine/autism questions from parents.
And then I read
Evidence of Harm and saw what a horrid sausage factory the medical research industry can be. And then I got online and started asking more questions. I began to gain a much fuller understanding of what a house of cards vaccine safety research was. I learned that there was no safety test for the chemical cocktail that my son got on September 18th, 2003 (still looking if anyone knows of one), that there is no comparison study between children who are given the CDC vaccine schedule and those who are not, that vaccines are not tested against a true placebo, that children with my son's medical histories are not included in vaccine safety research hence that research cannot be applied to them, that vast conflicts of interest (both declared and undeclared) exist in those making health recommendations and overseeing product safety, that many of those same conflicted people claim that there is no connection between vaccines and autism even though the research required to make that statement has never been done, that these institutions regularly made
contradictory,
nonsensical,
unscientific and easily disprovable statements for which they are never called out and that the media doesn't talk about any of this.
I learned that I had been robbed of informed consent.
And then I learned that there was no way for me to hold accountable any of the institutions or individuals who had participated in robbing me of informed consent. Pretty much my only recourse was to write to them and just have to deal with being ignored.
So I started writing about it.
And as I wrote about it, I was determined not to become like the people I was criticizing. Not to ignore my critics, not to overstate my case, not to treat people whose opinion (or personality) I didn't like as if they didn't count, to correct myself when I was wrong and to give everyone a fair shake and a hundred chances to correct their mistakes. To be earnest even to those who were not. To engage in civil discourse, even when I was really angry about something. To give people the benefit of the doubt that they earnestly want to get to the truth of the matter. All this is the hopes of allowing every chance for an actual coming together of "us" and "them" to figure out how peoples opinions differ so vastly on the vaccine/autism connection and in how to treat these kids.
I have not always succeeded in living up to that standard, but on the whole I don't think I have done too bad.
Along the way I have had the pleasure of engaging with earnest people who really took seriously whatever role they had in this debate. They understood that their opinions and actions had consiquences. They took criticism and had the ability to check themselves, because they understood that children's lives were at stake, so they had to be sure they were getting it as right as they could.
And then there are people like Chris Mooney, Sheril Kirshenbaum, Lori Kozlowski, Rosie Mestel, Thomas Maugh, David Gorski and Virginia Hughes.
About three weeks ago a friend sent me and article entitled "
Bringing science back into America's sphere" by Lori Kozlowski in the LA Times. It made me really angry. Angry that the LA Times was printing such a frivolous article about a subject so important that greatly impacts the health and lives of almost every child on this planet, angry that Chris Mooney seemed to have no insight into the fact that the public's 'rejection of science' as described by him may have something to do with the vast corruption in the science industries and the public health agencies who regulate them, angry that the second most contentious issue in medicine (behind abortion) was treated as if its outcome was a forgone conclusion, and angry that tens thousands of parents and even well respected, well reasoned, seasoned medical professionals were treated as if they were neanderthals for believing that vaccines might have an association to autism. Angry that the LA Times was hosing this shallow and irresponsible discussion between these two obviously very young writers.
And that anger apparently began to push me over some line somewhere, because today, three weeks later, I just don't care about giving myopic, immature, biased and unprincipled "science writers" the benefit of the doubt or a hundred more chances any more.
I wrote to Lori Kozlowski, Chris Mooney and Sheril Kirshenbaum (with whom Chris wrote his book, Unscientific America: How Scientific Illiteracy Threatens Our Future) and posed the basic questions, 'Might not the expanding chasm between the scientific community and the American public be the fault of the corrupt science industries who have destroyed public trust? Might the public be walking away from you because you have treated them... us... so damn badly? When a community like yours (Mr. Mooney identifies himself both with Skeptic Brand Science and the larger science and science journalism industries) dismisses, devalues, insults, misinforms, lies to, lies about, steals from and poisons the public, why are you surprised when they walk away from you? Where is your responsibility in this?'
I asked them to do some self-evaluation. Demanded really.
I emailed the letter to Lori Kozlowski,
posted it on my blog and
Age of Autism (which Chris disparaged in his interview) also ran it. The overwhelming response from my community of autism parents, "us" if you will, can be sampled in the comments sections following the piece and can be roughly characterized as, "What Ginger said".
Some of those I wrote to responded, some did not.
The response from "them" to my challenge that their dismissals, their insults, their lack of insight into themselves, their inability to self-correct and refusal to examine and address "our" concerns might be the problem, was to dismiss me, insult me, demonstrate an extreme lack of insight into themselves, display an inability to self-correct and to refuse to examine and address my concerns.
They responded to my accusations of failing to live up to the standards of their chosen industries, by failing to live up the standards of their chosen industries.
I called them biased, and to prove me wrong, they showed me their bias.
The picture I have had in my head as I have read the emails that have gone back and forth between these "science writers" and me is of a snake chomping down on its own tail. But not in the circle of life or ourosbors symbolism kinda way. More like what would actually happen if a snake in the real world decided to make a meal of himself. Suicide by ignorance. And oddly, responding to the woman shouting to them that they are eating themselves by eating themselves faster and with more zest.
Because what these individuals are doing is neither science nor journalism, and in the process they are destroying the professions of science and journalism.
And when I pointed this very phenomenon to one "science writer", David Gorski, MD, PhD, he still didn't get it. Or refused to get it. Or got it but still chose to dismiss me, insult me, avoid my questions, etc... etc...
Then yesterday I was contacted by Virginia Hughes, another young "science writer" who wanted to know if I would post her survey on my blog so that she could get the input of my community for a ethics report that she had been commissioned to do for Cold Spring Harbor Laboratory to inform the direction of their genetic autism research.
Well that really got to me.
Because the young Ms. Hughes had interviewed me two years ago at length for a piece she published in
Nature Medicine, that... well... was not reflective of the actual content of the debate or information I offered her, portrayed parents as dangerous whack jobs and didn't exactly fully vet the information she was offered by those who claim that vaccines don't cause autism. She let her readers know that poor scientists like Paul Offit were in danger for their lives from conspiracy theorists parents like me who believe that vaccines are associated with autism that she reported were known as "The Mercurys". (A moniker she apparently made up because not even Mom's Against Mercury had ever heard that nick name before. It didn't stick.) And although she can't even write an objective article about autism causation and treatment research, she is being asked to contribute to the direction of autism causation and treatment research.
Brilliant.
And because Ms. Hughes, who '
gushes about a hodgepodge of mostly scientific ideas on the ever-rockin' ScienceBlogs network' and is apparently
BFF's with "band chick" Sheril Kirshenbaum (for whom "scientist" is just "one of [her] many hats at the moment" and who wants to be an astronaut when she grows up) and Chris Mooney, who conveys all the subtly in his arguments (liberals good, conservatives bad, smart liberals smart, smart conservatives stupid) of... well... a 31 year old, unmarried guy with no children who is impressed with how clever he is.
And because these three very young, inexperienced and immature people are being published, and asked to serve on panels and invited to speak on life and death issues for children... for my children... by a science/journalism industry who seems to me to have lost its mind. Or is it that a corrupt industry can't find any grown ups to put forth these silly, biased, partisan arguments any more?
Smart does not equal wise, and foolish people in positions of influence are a recipe for disaster.
As I watch Chris Mooney claim to be a "journalist" and give a
speech to the American Institute of Biological Sciences where in he shows a slide of Jenny McCarthy and Jim Carrey calling them "Dumb and Dumber", I want to scream, "Where are the grown ups who are supposed to be overseeing these people! Parents of children with regressive autism are insult worthy to this guy, and he is being put in front of a microphone to talk to scientists about his book about how mainstream America, where the autism rate is now 1 in 100, is rejecting the message of people like him?! Is this whole thing one big practical joke?"
So I have just decided to give up. By all means Mainstream Science Journalism Industrial Complex, go ahead and put tweeners who dismiss half of the country, and insult and ignore people who say things they deem unworthy right out in front as your standard bearers. Continue to ignore your critics, and cash your Pharma checks and enjoy giving awards to one another as you become less relevant to people's lives and your news outlets fail. I am going to just pass you the salt and watch you devour yourselves.
But what I am not willing to do is let people remain under the impression that you are earnest, unbiased, professionals, leaving no stone unturned in the pursuit of the truth and in service to the public, if I can do any little thing about it.
So I am going to share with my readers all of the emails that I have been exchanging with these "science writers" for the last three weeks so that they can see for themselves that said writers cannot or will not evaluate information that does not fit into their paradigms, that they cannot or will not do any self-evaluation to see if they are on the wrong path, they cannot or will not simply answer the questions of a random angry autism mom and that when they pose as objective and thoughtful scientists or journalists, they are a perpetrating a fraud.
The responses I have gotten have been varied. David Gorski says that I don't count, Sheril Kirshenbaum thinks whatever David Gorski thinks, Chris Mooney apparently doesn't think any thing at all as he has never responded. Lori Kozlowski thanks me for my interest and encourages me to up her profile and readership by posting my thoughts on the new thread that the LAT has set up for commenters, complete with medical industry ads. Rosie Mestel, Lori's editor, wants me to not be so hard on Lori, poor thing, and does not want to address the implication that she may have made a really bad call in assigning this material as she did.
Then there is Thomas H. Maugh II who thinks I am, "Wrong, wrong, wrong, wrong!"
For those of you who have read this far, and intend to read the whole thing, please take note of what you will not see in the responses that I got from these "science journalists" who are posing to be accurate, objective reporters on autism
You will not see the phrase, "that is a good point, let me think about that". No where will you read, "yes our community might have a blind spot there, we need to work on that". No one responded, "you are right, we have never even covered that part of the debate, can you point me toward your source on that?" Not even a, "well I can see why you are all worked up about this and you could be right there, but we are so overwhelmed we just don't have the resources to look into that right now".
Because those of you who still believe that what you read from these sources is well thought out, thoroughly investigated and crafted by earnest, wise, honest professionals working hard to overcome the biases and corruption that are inherent in any kind of writing, and understand the dead seriousness and life or death consequences of the words they will be putting down on paper, just might be wrong.
And that is important, because at issue is not your picks for fantasy football. At issue is the life and health of your child.
These writers combined reach hundreds of thousands of people. Millions even. On a good day I have about 500 visitors. All the power I have in the world to fight this are my words typed from my living room as I run back and forth from my computer to my mischievous and danger prone son with autism, but I am spending it all here. So for the few of you who will read this, please encourage those you love to think critically about the messages they are getting. To ask hard questions of those making medical and scientific pronouncements and when those pronouncements don't hold up to scrutiny, to vote with their feet and walk away.
Because morality, honor and wisdom in scientific journalism is dying. The corruption is drowning out the voices of the few in the industry that are speaking out against the nonsense, and the death continues because it is propped up by those who won't walk away from the individuals who are killing it. Editors and media owners have no motivation to check their writers as the bias of their writers are bring in Industry Dollars (even while their readership dwindles because they are not getting the hint). The only check in this system any more is the American Public.
In the last few years I have become interested in the anatomy of corruption. The actual process by which institutions (and individuals) destroy themselves or betray their own mandate. It can be likened to the process of death by cancer.
I read once that it is estimated that 90% of the public has "cancer" at any given time. Generally speaking "cancer" happens when a cell divides incorrectly, which happens a lot. Fortunately a healthy immune system will spot the errant cells and destroy them before they cause harm, so most people are not threatened by these errors.
But when the immune system ceases to recognize and address these errors, two malignant cells become four, which become eight which eventually kill the host.
The LA Times is dying. They filed for
bankruptcy in December and have
laid off people this year. And of course they are. When a reader writes passionately to them that they have handled a very important issue, very poorly, and they respond with dismissals, insults and see it as an opportunity to capitalize on controversy rather than doing their journalistic duty, it is ample proof that their immune system is dead and the cancer is running amok in the body.
As I publish this piece and the correspondence between these individuals and myself, it is in the full expectation that the reaction that I will get will be dismissals, insults... blah, blah, blah... ad infinitum... the snake continuing to eat itself. But in the event that anyone decides to take a look in the mirror, makes a move to end the cycle of self destruction and actually begins to try to answer my questions or take a hard look at themselves to how they are contributing to the demise of their own work and the alienation of the public, I will certainly call attention to it.
So public, decide for yourself. Are these the people that you want to be taking medical and scientific advice from on how to keep your children safe?:
The initial article:
"
Bringing science back into America's sphere" by Lori Kozlowski
My letter to Lori, Chris and Sheril:
Lori, Chris and Sheril,
I am an autism parent with an MS is Clinical Counseling from Johns Hopkins University and a contributor to Age of Autism. I maintain my own blog at Adventures in Autism.
I saw Lori's piece today and would like to point out a few things that seem incredibly obvious from where I am sitting, but you genuinely don't seem to have on your radar (from what I could tell from the article), in regards to why America is not embracing "science" as you think they should. I hope you will be open to hearing from me for a moment, because there is a problem, but the problem may not be the public.
I feel like you may have confused actual hard "Science" with "things that most scientists think", as there seems to be a denial of the fact that scientific consensus has quite often been, and most assuredly still is in many places, wrong.
Chris and Sheril wrote: "...today this country is also home to a populace that, to an alarming extent, ignores scientific advances or outright rejects scientific principles."
I would put it to you that it may not be the "scientific principles" that are being rejected, but the principles of the scientists.
When my son regressed into autism following his 18 month shots and I spent a year trying to reconcile all of the contradictory positions of my own pediatrician, the AAP, the CDC, HHS, the "science" you say exonerates vaccines from autism causation, the whole of the research out there and the facts of my own son's case. What I found was a ridiculous mess.
What you keep referring to as "science" is making contradictory statements all over the place. It resembles nothing like the thing that "Science" is actually supposed to be, the methodical study of phenomena to figure out what is ACTUALLY, TRULY happening.
Yet the statements that scientists make claim that all the vaccine/autism questions have been answered, purport that all the possibilities have been explored and suggest that people should just kill what intellectual curiosity and concern for child safety that they have left and move on? How is that "Science"? How is that not laughable?
Case in point from Lori's article: "science has come in and we can't detect the correlation between a rise in autism diagnoses and use of childhood vaccines. And study after study has been done."
Yet "science" has never done a simple study that took a large group of vaccinated children and a large group of children whose parents chose not to vaccinate them, and compared them for autism incidence! Yet you suggest that it is time to let the vaccine/autism question go? The FIRST study that "science" should have done, still has never been done! And it may take an act of congress to actually make "science" do something it apparently really does not want to do. And that is only the beginning of the studies that have not been done.
Not to mention the fact that "study after study" is picked apart by other researchers, and even by lay parents, but those critiques are ignored by people like you who don't want to follow the actual scientific method. This same bizarre conversation is carried out over and over:
Mainstream science: "Here is a study... look no vaccine/autism connection".
Autism community: "Hey... look here... you guys forgot to carry the 3. Wait... half of our kids' medical histories are in the exclusion criteria!".
Mainstream science (now with their back to the autism community and facing the microphones): "Awww.... poor desperate, scientifically illiterate parents looking for someone to blame. At some point they really have to let go."
There are about a thousand questions on the vaccine/autism connection that neither scientists nor research has ever addressed, and the medical establishment won't even allow to be asked in their "pulpits" because "science" is the new religion and their dogma cannot be questioned. Scientists are the priests, and those who diverge from the are branded heretics. Vaccines are inherently "good" and cannot be "bad". The research that points to vaccines causing autism is treated like the evidence that priests were molesting young boys... ignored, buried and those who dared call attention to it are bullied into silence. And yet you have a problem with the suppression of discussion of evolution in churches? Again.... from where I sit, the hypocrisy of your statements are stunning.
The scientific community overstates the benefits of vaccination and understates the risks. And of course they do, vaccination is their baby. Yet they don't seem to have the insight to understand that there is a conflict of interest there. Last year the AAP sent a representative to a Defeat Autism Now! conference to evaluate the state of their science into autism/vaccine causation. They sent Louis Cooper of the Sabin Vaccine Institute, one of the inventors of the Rubella vaccine. Seriously? Lou Cooper is the objective guy that is going to return to the AAP and declare, "You know what guys... I think the vaccine I invented and that is my greatest accomplishment in life may be playing a role in an epidemic of lifelong and deadly neurological disorders that are striking around 1 in 100 kids! I think we may have caused an epidemic!"????
I don't think that you have fully grasped what has happened in the vaccine/autism wars. A very large group of parents, physicians and researchers have made the accusation that mainstream medicine, the scientific community and public health authorities have created one of the largest iatrogenic epidemics of all time via an overzealous and under researched vaccine program. A very serious charge. Your community has responded to that charge by doing a minimal amount of shoddy research, in most cases paid for and carried out by the pharmaceutical companies that made the products in question and the agencies that made the policies that put these products into almost every tiny body in this country regardless of their risk factors, while simultaneously mocking those making the charge.
You have declared that YOU HAVE INVESTIGATED YOURSELVES AND FOUND THAT YOU ARE NOT GUILTY ON ALL CHARGES! And the policy makers among you have made sure that no appeal can be filed in an actual court where your accusers can bring evidence against you, compel you to testify under oath, or compel you to turn over internal documents, as you have passed legislation exempting yourselves from any liability or litigation. You claim innocence and just tell us that we have to take your word for it, as if "smart" also mean "honest", "incorruptible", "omniscient" and "looking out for the best interests of the public and all individuals".
Why in the world do you think that your reputation should be on the rise?!
What is happening is denial on a scale far grander than what transpired during the initial Semmelweiss Reflex. You want the public to embrace science, even the science that they don't want to face? You go first!
I started to write more on all of the corruption that is going on in the medical and scientific industries, but who has that much time.
Yes... to solve the problem that you want solved, reportedly that you want mainstream American to embrace "science", "Scientists are going to have to have a culture change."
But the change you suggest is the wrong one. You don't need more scientists (or more nerds rapping about super colliders), you need the scientists you already have to have a come to Jesus moment. The scientific community needs to understand that their hubris, arrogance, devaluing of the individual, ethical problems, legal problems, widespread conflicts of interest and constant denials of any evidence that is inconvenient to the advancements of their "scientific" agenda is the problem, and has to come to an end.
The scientific community needs a big dose of humility, and needs to consider the fact that their critics and those ignoring them, might have a few good points.
They need to listen to, and be able to cogently address their critics, instead of marginalizing and maligning them. And if they don't have an answer, they have to offer informed consent to the public and admit that they don't have an answer.
People see right through condescending BS. People have a to treat you with the same dismissal with which you have treated them. What you are seeing may not be a "deep-seated streak of anti-intellectualism" but a deep-seated distrust of self-proclaimed "intellectuals" who openly disdain the unwashed masses, then wonder why their scientific pronouncements hold no sway with them.
Take minute and go read any autism/vaccine post on Orac's blog, as he is the rock star of the "woo" bashing 'skeptics' in your universe. Now pretend that you are a parent who has learned that thimerosal at nanomolar amounts causes mitochondrial dysfunction so severe that it can cause the cell to self destruct, and that HHS has conceded that in the Poling case mito dysfunction + vaccination = autism symptoms. And pretend that one of your questions are that if vaccines are known to cause Guillian-Barre, an autoimmune disorder in which the immune system attacks the central nervous system, then why can't they cause autism, an autoimmune disorder in which the immune system attacks the central nervous system? And pretend that you want to understand that if one vaccine contains enough adjuvant to stimulate the immune system sufficiently to put it on a search and destroy mission for viruses, then why do docs give five shots at once and claim it couldn't possibly overstimulate the immune system in some into a search and destroy mission for its own tissues; and why can't it cause the autoimmune state and neuroinflammation found in autism? And then pretend that you are confused by the stance of "science" that a fetus contracting Rubella is a known cause of autism, but that that a one year old being given a live virus rubella vaccine couldn't possibly cause autism; while remembering that VICP has ruled that Baily Banks would not have had ASD if not for his MMR.
And pretend you saw Julie Gerberding go on CNN and say that vaccines can cause autism and cannot cause autism.
And then pretend that you spend untold hours on pubmed and in chat rooms and on HHS/CDC/AAP web sites and you can't find any cogent answers for the questions you have. And pretend that your own pediatrician just got annoyed with you for asking questions he couldn't answer and then just stopped returning your calls.
And then go read Orac again (or any 'skeptic' blog or even your own article in the LAT) and ask yourself... 'why would any thinking person want to listen to us when we can't answer their questions and instead treat them with contempt to cover the fact that we can't answer their questions'?
Your 'skeptic' community's message to the public and parents like me? "You are an idiot and we have nothing but contempt for you. Now think what we tell you to think and do what we want you to do, even if it doesn't make sense".
Treat your audience like crap, and they will leave. Claim to be a scientist and spout completely unscientific and illogical statements (mean ones at that), and no one will care what you say.
Chris, when your own suggestion on how to fix the problem that you have defined is to lean more about the people who are resisting your message, not so that you might learn from them as to where you might have gone off the tracks, not even so that you might enter into a mutually respectful relationship with them where you are on the same level (what with you being "super smart", "highly educated" and "doing great stuff" while they are way behind you on some imaginary starting point), but so that you might condescend to where they are in order to manipulate them into believing what you want them to believe... can you see that you can't even see what the real problem is?
It is clear from this article that those you target, you do not consider your equals.
"Smart" is not the only virtue, and it may not even one of the most important virtues. Look back at the people who have done the most damage to humanity through out history. You will be hard pressed to find a dummy among them.
Responses from Lori Kozlowski, Rosie Mestel and Thomas Maugh from the Los Angeles times:
Subject: RE: "Science"
From: "Kozlowski, Lori"
Date: Mon, 24 Aug 2009 15:56:41 -0700
To: "Ginger Taylor"
Ginger,
Thank you for writing and for reading my article on 'Unscientific America.' I appreciate your well-thought out comments.
I’ve created a place for readers to weigh in publicly on the various issues discussed in the piece. You are welcome to provide your own public comment here, if you wish:
http://latimesblogs.latimes.com/booster_shots/2009/08/bringing-science-back-into-americas-sphere-hits-a-nerve-.html
Actually, as I look at the blog post, I see that you’ve weighed in already. Thanks for doing so.
All my best,
Lori
---
Lori Kozlowski
Los Angeles Times | latimes.com
202 West 1st Street | Los Angeles, CA 90012
P (213) 473-2492
lori.kozlowski@latimes.com
From: Ginger Taylor [mailto:Ginger@AdventuresInAutism.com]
Sent: Monday, August 24, 2009 4:23 PM
To: Kozlowski, Lori
Subject: Re: "Science"
Lori,
Do you plan on giving any actual examination and thought into the questions I have raised and the evidence that vaccines can cause autism in a subset of vulnerable children? Do you plan on challenging Chris on any of pronouncements? Will you behave as an actual reporter acting in the public's best interest? Does the fact that Harvard Doctors believe that autism is a toxic injury concern you at all? Or the fact that if you have a son he has a 1 in 38 chance of having autism, a 1 in 6 chance of developmental delay or disorder?
Doesn't Chris' statement that it is the well educated parents that are abandoning vaccination even make you curious as to why?
Or is this just about stoking the fires to boost readership of a failing newspaper and flattering "scientists" by writing puff pieces on them?
If you appreciate my well thought out comments, then stop trying to build a fan base and act on them.
My right leg for a newspaper with integrity.
Ginger
Subject: RE: "Science"
From: "Kozlowski, Lori"
Date: Mon, 24 Aug 2009 16:47:01 -0700
To: "Ginger Taylor"
Hi, Ginger,
The Health and Science desks have written lots of autism-related stories, and we have others in the works at the paper.
Hope this answers your question.
Best,
Lori
---
Lori Kozlowski
Los Angeles Times | latimes.com
202 West 1st Street | Los Angeles, CA 90012
P (213) 473-2492
lori.kozlowski@latimes.com
From: Ginger Taylor [mailto:Ginger@AdventuresInAutism.com]
Sent: Monday, August 24, 2009 4:59 PM
To: Kozlowski, Lori
Subject: Re: "Science"
Dear Lori,
No. That does not answer any of my questions. How in the world would you think that answers any of my questions? You have a Master's degree yes? Then surely you have the capacity to understand that the fact that the LAT has written about autism before has nothing to do with any of the questions I have posed.
I would like to offer you an appropriate response to your professional, polite and condescending misdirection, but I can't figure out how to spell a scream.
Because I just wrote a column about how the dismissal of parents questions with nonsense answers drives the public to ignore science writers, and YOU RESPONDED BY DISMISSING MY PARENTAL QUESTIONS WITH NONSENSE ANSWERS!
You make no sense. You make me crazy. You are harming the cause of real science. Please quit journalism.
Best,
Ginger
Subject: RE: "Science"
From: "Kozlowski, Lori"
Date: Mon, 24 Aug 2009 17:03:49 -0700
To: "Ginger Taylor"
CC: "Mestel, Rosie"
Ginger,
The piece was a Q&A. The questions were mine, the answers were Chris Mooney’s. He went on the record about his book and talked about the topics in his new book.
Whether Chris Mooney’s statements are challenged (in terms of autism and vaccines) and what kind of reporting we do on autism will be up to the editors here.
My editor in CC’ed here.
Best,
Lori
---
Lori Kozlowski
Los Angeles Times | latimes.com
202 West 1st Street | Los Angeles, CA 90012
P (213) 473-2492
lori.kozlowski@latimes.com
Subject:
RE: "Science"
From: "Mestel, Rosie"
Date: Mon, 24 Aug 2009 17:17:20 -0700
To: "Kozlowski, Lori" , "Ginger Taylor"
Hi there Ginger—just to reiterate, Lori was asked simply to write a Q and A with Chris Mooney, one that covered a variety of topics that he raised in his book. Lori writes a lot of Q and As for our paper, as well as being responsible for a lot of other tasks here. Lori’s beat is not autism per se, nor science per se. There are other medical writers here who have pursued stories on autism in the past and will certainly be writing other ones in the future, I know for a fact.
We are not surprised that Mooney’s remarks provoked reactions of a broad range--and like Lori, I am glad that you took the time to make your thoughts known on the comments blog.
But please, don’t take it out on Lori. She merely did what she was able to do in the space and time she had for this task—ask questions on a variety of topics to the author of a controversial book. This is not her beat.
Best wishes to you,
Rosie Mestel
From: Ginger Taylor [mailto:Ginger@AdventuresInAutism.com]
Sent: Monday, August 24, 2009 7:02 PM
To: Mestel, Rosie
Cc: Kozlowski, Lori
Subject: Re: "Science"
Ms. Mestel,
Then I have to ask you... why are you assigning and publishing Q and A puff pieces about probably THE most controversial subject in medicine aside from abortion? Lori's article treats this as if it were a book about cooking. None of her questions even challenged the premise of the book!
Is the job of the LAT to sell Mooney's book or inform the public?
I have read many of the pieces on autism that the LAT has done, and I don't recall your paper bringing anything to this discussion in many years. I believe this was the last real journalism you practiced on the subject. (A story about how the smartest vaccine inventor ever was knowingly and secretly poisoning children... because smart does not equal ethical).
Please read my response to Lori's article and my entire exchange with her. Are these concerns that your paper has addressed before? Are they concerns that you have even heard of before?
Have the phrases "vaccine induced encephalopathy" or "acute disseminated encephalomyelitis" ever even appeared in the Los Angeles Times?
OF COURSE you are getting a long of reactions.. you are doing a really bad job of "journalism" on an epidemic that is killing and maiming children!
ONE PERCENT of children now have autism... I don't even think you have reported that. What will the autism rate have to be before you publish as much about that as you do the H1N1 flu, that is a mere blip compared to the autism epidemic.
Tomorrow at nine am I have to go into a congressman's office and tell him the things that he should have learned from the newspaper over the last three and four years. And likely he will not believe me, because surely if these things were true, they would have been covered in newspapers like yours for the last few years, right? Because surely a potential public health disaster like this would have been picked apart by hungry journalists, right? (Unless of course the newspaper is beholden to the medical industry that pay for ad space, like the "City of Hope" ad on Lori's article, or the UCLA Health Systems ad on the page of comments about her article). And I will offer him information directly from journals and HHS sources, which he will not have time to read and digest on his own. Because he needs you to investigate our claims and tell him whether we have a point or not, because he is a congressman with one billion issues on his plate and two staffers. But because there are no newspapers any more that will do any investigative journalism and hold CDC/HHS/VICP's feet to the fire until they explain their absurd statements and nonsensical rulings that vaccines both do and do not cause autism, he will pat us on the head and wish us the best.
And why shouldn't he doubt me? "Prestigious" newspapers like the LAT don't even take the theory seriously, they print articles MOCKING it and treating proponents of the theory as a problem to be solved.
Do me a GIANT favor. Visit the Department of Health and Human Services web page that lists the known, adverse reactions to vaccination. Note that one such adverse event listed for both DTaP and MMR is "encephalopathy". Now scroll down to the middle of the page to the description of 'acute encephalopathy' in children 18 months and older.
Note that it lists "seizures" as one symptom, and remember that almost a third of children diagnosed with "autism" also have seizures. Then note that "decreased level of consciousness" is also a symptom of encephalopathy. It is described thusly:
"A significantly decreased level of consciousness" is indicated by the presence of at least one of the following clinical signs for at least 24 hours or greater (see paragraphs (2)(I)(A) and (2)(I)(B) of this section for applicable timeframes):
(1) Decreased or absent response to environment (responds, if at all, only to loud voice or painful stimuli);
(2) Decreased or absent eye contact (does not fix gaze upon family members or other individuals); or
(3) Inconsistent or absent responses to external stimuli (does not recognize familiar people or things)."
THAT is a description of a child with autism. THAT was a description of my son following his DTaP shot for which he was diagnosed with "autism". THAT is what Hannah Poling, a child with "autism" was paid by the VICP for.
Now read this WaPo piece, and my reaction to it.
Now watch Julie Gerberding trying to explain the Poling decision to Sanjay Gupta on CNN.
Now read Lori's piece again, keeping in mind that Mooney is ignoring all of this and just calling case closed on vaccines and autism
Do you now understand where the wrath toward the irresponsible media is coming from, as "journalists" like Lori just do the bobble head nod to "scientists" and public health officials as they spout nonsense?
Please allow me relay one more story while I have your ear. I went to a state university lecture on vaccine safety last year. The head of epidemiology for the state stood at the podium and made the emphatic pronouncement that "vaccines do not cause autism" and referred to the NEJM article, "Early Thimerosal Exposure and Neuropsychological Outcomes at 7 to 10 Years," to prove it.
Except that autism was part of the exclusion criteria for that study. Sentence three of the abstract says, "(We did not assess autism-spectrum disorders.)" I had to call her out during the question and answer period, because apparently she had not read past the title of the study, much less the whole thing to see what it actually proved or didn't prove.
If you or Lori had interviewed her, would you have even check her story to see if the research actually said what she said that it said?
So these future articles on "autism", will they address any of the points I have raised in my one thousand emails to the LAT over the last two days? Do you want more info to start on, cause the stuff that has not been reported or investigated could fill a book.
Or am I just wasting my time again?
If I am waisting my breath, then just don't write back, so I won't be tempted to waste any more. If not, then call me.
Sincerely Angry,
Ginger Taylor
207-729-xxxx
Then Ms. Mestel sent the following email to LA Times Science Writer, Thomas Maugh"
From: Mestel, Rosie
Sent: Tuesday, August 25, 2009 11:02 AM
To: Maugh, Thomas
Subject: FW: "Science"
While you are far from home, I thought you might enjoy reading this correspondence with an autism-vaccine parent.
Feel free to write back to Ginger if you would like!
So Mr. Maugh wrote back to me:
Subject: FW: "Science"
From: "Maugh, Thomas"
Date: Wed, 26 Aug 2009 08:43:32 -0700
To:
CC: "Mestel, Rosie"
Wrong, wrong, wrong, wrong!
We have covered all those topics. Vaccines do not cause autism. The scientific proof is overwhelming. It's just a small number of denialists who fail to accept the truth.
Thomas H. Maugh II
Science/Medical Writer
Los Angeles Times
202 West First Street
Los Angeles, CA 90012
800 283-6397 x 77953
213 237-7953
FAX: 213 237-4712
My response to Mr. Maugh:
Subject: Re: FW: "Science"
From: Ginger Taylor
Date: Wed, 26 Aug 2009 13:07:11 -0400
To: "Maugh, Thomas"
CC: "Mestel, Rosie"
Mr. Maugh,
Thank you for your thorough, objective and earnest rebuttal.
Can you please point me to your examinations of:
* Vaccine induced encephalopathy in "autism" (the Poling and Hiatt cases)
* Vaccine induced acute disseminated encephalomyelitis in "autism" (The Banks case)
* Thimerosal induced mitochondrial dysfunction and its possible role in "mitochondrial autism"
* Mercury metabolism and glutathione depletion in those with "autism"
* The role of environmental mercury in "autism" incidence
* Autoimmune disorders and neuroinflamation in "autism"
* How vaccine adjuvants work, the autoimmune disorders they cause and how they could not possibly be causing the neuroinflamation found in those with regressive "autism"
* The role of the live rubella virus in "autism" causation both prenatally and at age one
* The administration of vaccines in combinations that are untested and to populations for which there is no safety data
* The VICP ruling that the Hepatitus B vaccine causes MS and how administration to infants in the first hours and days of life may be causing neuroimmune disorders
* Julie Gerberding's private document admitting to Congress that the CDC's only autism/thimerosal study was useless
* Dr. Gerberding's "vaccines do and do not cause autism" stance as stated on CNN
* The professional misconduct and conflicts of interests of those who in the scientific community and media industry who claim that "all the questions have been asked and answered".
I would like to review them myself and see if I find the evidence as overwhelming as you do.
Thank you for your time and your service to the public,
Ginger Taylor
PS... I would also like to forward you more information and sources that Chris Mooney may have overlooked in his examination of the vaccine/autism relationship, and video of lectures given by Martha Herbert (pediatric neurologist) of Harvard on the environmental causation in autism, and by Jon Poling (neurologist and father of Hannah Poling) formerly of Johns Hopkins on the role of vaccines in autism causation, given at the autism conference at the Maine Centers for Disease Control in May.
I want to be sure you were staying up to date on all the new information out there, as the paradigm in "autism" causation is changing rapidly and many in the media have not noticed.
I did not receive a response to my request of Mr. Maugh
But then David Gorski (a senior cancer surgeon who is pushing 50 but still calls himself "Orac" as he holds out the very low standards of behavior for a physician to his readers and whom I have attempted to have a civil, productive discourse with for a few years despite his contempt for me and my point of view) responded to my letter to Lori, Chris and Sheril. His response can be found here:
In which Orac defends Chris Mooney and Sheril Kirshenbaum...
Note that he misses the entire point of my letter.
So I wrote to him, attempting one last time to have an earnest discourse with him:
Subject: Your piece today
From: Ginger Taylor
Date: Wed, 26 Aug 2009 11:43:10 -0400
To: Orac
David,
I see that you wrote a condemnation of me and my piece. I have not read it entirely, but just skimmed the top and the bottom and wanted to write you about two things:
1. You do know that we have selectively vaccinated my older son, since his younger brother's regression right? (basically he got one of everything) We likely won't be giving him any more, unless we perceive that there is a serious threat to him in which the benefits of vaccinating him might actually outweigh the risks. I wanted to call this to your attention, as you repeatedly call me anti-vaccine. I write about informed consent and corruption in medicine, but I have never told anyone not to vaccinate.
Just wanted to make sure you were clear so that you could be as accurate in your writing as possible.
2. "Finally, I can't help but note in closing that the call for "playing nice" from Ginger and other anti-vaccine zealots is always one-sided."
As I wrote to you in our last exchange, I work very hard not to display the kind of personal meanness that is going on in this debate. I have come to you personally and privately any time that there was a concern that I was not being fair in any way (as I am doing again now) so that I could correct anything that I have written that is incorrect, or address quickly any personal offense.
So let me do that again with you.
I have pointed out in my piece (because Chris is missing this in his analysis of the disconnect) that the dismissal in your community of us is driving this disconnect in many ways, and I used your propensity for insults of people like me as my example (keep in mind that you and I were having many exchanges on vaccines just after my son's regression, before I became a committed vaccine blogger, in which I was genuinely trying to hear from you as to why I should believe that the timing of his regression was coincidental to his vaccines, and you were dismissive and pretty rude about my earnest appeals. I gave up.). I feel that my point has been proved by your mention again in your closing comments that you don't care about reaching parents like me (or me specifically).
Right now my conscience is clear in regards to treating you fairly, as I have come to you many times in private, and in good faith, to address any sub standard behavior on my part. And as of now, I believe that I have listened to your criticism (that I needed to be more humble) and, I thought, responded well (I took my credentials off my site at the time, as you will note my profile only says that I am an autism mom. I have mentioned it in places where it is relevant, as in the letter to the LAT, as I have a foot in both camps [or at least a toe anyway], although I don't identify myself as a 'scientist' by any stretch. Just a mom with enough education to spot the problems in research and its applications).
HOWEVER
I am absolutely open to hearing from you if you believe that I have been unfairly harsh to you personally.
Please let me know if I have personally offended you in any way.
I will read the entire article, but I honestly don't think that I will have the chance to do so and offer any cogent response until my children return to school next week. (just getting this email sent this morning has been a challenge, I won't bother taking the time to proof it or it will take till evening, so please forgive the errors that I am sure are there) If you have any good points that merit an alteration or retraction on my part, I will respond to those, but I will likely not respond to the attacks on me publicly as I have no interest in getting into a war with you. I will make sure I respond privately though.
But in the mean time, let me know if there is some misrepresentation of, or offense against you that I have to address.
Thank you for your time,
Ginger
Unfortunately his response was as inhospitable as ever:
Subject: Re: Your piece today
From: Orac
Date: Fri, 28 Aug 2009 00:41:37 -0400
To: Ginger Taylor
Ginger,
I suggest you read carefully the second to last paragraph of my post in particular for my answer to the question of your "civility." I take it a bit personally when you indiscriminately label my entire profession as corrupt, arrogant, and dogmatic, even going so far as to liken us to the Catholic Church hierarchy who looked the other way over pedophile priests, and then to pile on bloggers whom I know, such as Chris Mooney. I'm funny that way. Besides, you fired the first shot in my direction. One might even say that shot was worthy of Respectful Insolence. In fact, it may even surpass me; in my nearly five years blogging I don't recall ever invoking pedophilia in any of my criticisms of the anti-vaccine movement, although I have been called a pedophile by at least one person on "your side." About nine years ago, a Holocaust denier did the same thing because I also am involved in fighting online Holocaust denial; that's not good company to be in as far as tactics go.
You may think that by adopting an oh-so-superiorly self-righteous pose of civility to individuals but gleefully (and with lots of ALL CAPS) lambasting entire professions indiscriminately, you show yourself to be superior to your critics, that you escape the charge of nastiness, arrogance, and condescension that you level at Chris, me, and others, but you are mistaken. Your approval, either tacit or explicit of the overblown attacks on people like Paul Offit tells me that. I don't recall ever having seen you criticize your buddies at AoA for being so "nasty" to Paul Offit and Brian Deer, for example, and you certainly seem blissfully unconcerned about Andrew Wakefield's massive conflicts of interest, which compare unfavorably with those of big pharma. To you it's all hunky dory or you remain silent. Of course, that's because you agree with them, and nastiness is just fine as long as it's coming from "your" side. When I see you lament the equal incivility coming from the likes of J.B. Handley, I might actually start to take your complaint seriously.
David
And that was apparently that was the end of the patience I have been able to extend to David Gorski:
Subject: Re: Your piece today
From: Ginger Taylor
Date: Fri, 28 Aug 2009 02:21:33 -0400
To: Orac
David,
I will address all this, but I want to clarify something first.
I don't feel like you understand the context of this problem. The problem Chris posed was that mainstream America (and educated Americans at that) were rejecting science.
In this scenario, you (generalizing) "the science community" have a product that the people are not buying. I am making the point that may be because your customers believe that you hate them and don't care if your product hurts them or not. As evidenced by the fact that you blanketly reject whole sections of society who don't say/do/think what you want.
It is not the job of the customer to be nice to the salesman. If parents like me, or Handley, or ANYONE offend you or upset you, why does that exactly matter?
And keep in mind, we have other outlets besides you now. My son regressed five years ago, my docs would not address my questions and concerns, you (you personally) were a total jerk to me, and I found doctors that actually listened to me. When I did what they told me to, my son started talking again, making eye contact again, calling me mommy again, he is mainstreamed in school now, his GI problems are all but gone (unless he steals a piece of bread from his brother), and while not recovered, he is a fully engaged member of our family again.
The point I am trying to make, because I ACTUALLY am trying to help you guys understand the problem so that there can be ACTUAL coming together of our two camps, is that your viciousness is driving away anyone who might really want to have earnest debate and figure out where the disconnect is in our two understandings of what is going on in vaccine adverse events and autism!
You are a used car salesman, who is mean to his customers and won't answer their questions in any earnest or remotely satisfactory way. Even the ones who stick around and TRY like I did eventually just throw up their hands and leave. And walk next door where not only the sales people treat you like a human being, BUT THE CARS ARE WAY BETTER!
Do you get this? Do you understand the point of my whole piece? You seem baffled that Jenny McCarthy holds more sway with the public than you guys do. Well she stepped into a vacuum that was left by you guys.
YOU HATE US! YOU HATE ME! You said so in your article. I don't count. I am too far gone!
But the "us" that you hate, is just getting bigger and bigger. Half the population now thinks vaccines are causing widespread damage, so now you hate half the public, and half the public knows that you hate them.
So my question is to you, why should anyone care if you (personally) are offended? Let's say for the sake of argument that I was just completely fed up with your shenanigans, decided to ignore my conscience and decided I really didn't give a crap what you thought any more and I was going to just be as vicious to you publicly as I possibly could. I decided that Handley had it right all along (I seriously can't believe you are comparing his behavior to mine) and just went on the attack. I am the science customer and you are the science salesman. The burden of proof that I need your brand of science is on you.
We are not two kids on a playground, "they were mean to us so it was ok to be mean back to them". You are a frigging DOCTOR! You have the responsibility! This is not a game. Children's lives and futures are at stake! You act like a bitchy hairdresser in a salon slashing people with your words to prove that you are the most clever and can be the most popular, David. Are you really proud of your writing? Are you proud of the fact that you personally can treat parents like me as if they just don't count?
When I wrote that I thought Chris did not see his targets as his equals. I didn't qualify that statement, I said what I meant. I didn't mean professional or educational or intellectual equals. I mean fellow human beings of equal value, worthy of self determination. Equals.
It is absolutely clear to me, because you keep saying it over and over, and because your actions follow it up, that my community and me don't count. We are unpeople to you.
When you do that to people who are in a in a higher SES or power position, that is foolish. When you do it to people who in a lower SES, struggling, impaired or burdened more than you, that is just awful. You are a doctor, who makes fun of parents of sick children who spend their days (and nights) cleaning excrement off the walls and trying to keep their kids from jumping out of windows.
Did you get into medicine to behave like this?
You know what... I know that this is not a humble letter, and I wish it was, but apparently I just don' t have in me tonight, but you are the one that is supposed to be the physician. You are the one that is supposed to be the grown up. Do you have ANY idea the kind of damage you do? Let's even say that it turned out you were 90% right... do you really think that your presentation, filled to the rim with insults and all of the same poor logic and ad hominem attacks that you accuse everyone else of, side stepping all the important questions, is solving the problem of the publics cynicism about mainstream medicine???
And you lie! My last email [exchange with] you I asked you to just give me a simple outline of your position, and you evidence for your position. You rejected my request with the oh so selfless argument that you didn't see anything in it for you! I wanted to call you and scream, "NOTHING IS IN THIS FOR EITHER OF US YOU ADOLESCENT! IT IS ABOUT CHILDREN NOT GETTING SICK AND DYING FROM VIRUSES OR VACCINES YOU SELFISH BABY". I resisted that temptation as I was really trying to be gracious and learn more humility, and I said a polite good bye. And yet in your piece about me, you claim that you just can't get through to me for all your trying? SERIOUSLY!?
I wrote a piece about the credibility problem mainstream science has because they have behaved so badly and because they hate their customers. And you responded to it with a piece in which you behave badly, exclaim that yes, you do hate your customers, and say that it is ok because those people don't count. I couldn't have asked for more proof that I was right than your column. Can you see?
Do you have any capacity for self examination?
Bottom line... you can behave how ever you want. Autism/vaccine science is not your field, so you are subject to no oversight. But I am trying to get you to understand that there are consequences to your behavior beyond getting your little circle of followers to digitally high five you. You have spent years berating the public, while more and more in your community are making front page news with their egregious behavior and amorality. They are now leaving. Chris wrote a whole book pointing out that fact. Lots of mainstream physicians are going with them.
re:other stuff... I think I have only written a few pieces about Wakefield the others are just positing articles. Honestly I have not really followed his stuff. My son never got the MMR, he regressed after DTaP and Hep B, so that is where my focus was. And from where I sit, he is not really a problem. I have friends with sick kids, they go to Thoughtful House, they get treated, they get better. All of the Wakefield info is being sorted out and I am not up to speed to do that, but he is making sick kids better David. Do you get that.
Do you get that thousands and thousands of kids with "autism" are getting better, dramatically? Have you met any of these kids? Have you gotten out from behind your computer and actually looked at any of these kids? Offit wrote his whole book and admits that he doesn't treat kids with autism and doesn't know any kids with autism. He just read some stuff and heard some stuff.
It was then I decided to write a book about colon cancer.
Also the reason that I don't post lots of critical things about my community, is that I don't post critical things about parents. You might note that I don't critize the ND community, [ND Parents], any of those people. Because they are parents. They can behave how they want to behave. They can raise their kids as they see fit. I don't pick on everyone like you do. I criticize those in positions of power who have legal and ethical standards to uphold. Physicians, Politicians and public health officials, in that order of severity. You might note that I am not even that critical of individual doctors on either side. Only those who decide they want to get into this fight, go on TV and say stupid things. Dr. Wakefield treats our kids, but I have never seen him on TV.
And please stop putting words in my mouth. I did not compare scientists to pedophiles. I compared unwelcome EVIDENCE to unwelcome EVIDENCE.
You are not a stupid man. There is no way that you really think that I really said that. You know that starting off with my lack of humility, when humility on the part of the public or parents is not a part of the issue, is the same stupid ad hominem attacks you are always bitching about. You know that I do not behave like JB Handley. You know that I have been earnest in my dealings with you. And it is just bizarre that you have an expectation that I should be humble, while you explore the heights of "insolence"... what is that about? Can you see where I say that you don't consider me an equal?
It is two am and I am going to end my rant, go find some tea that will lower my blood pressure and go to sleep. If you really want to address any of this, for real, call me.
Ginger
207-729-xxxx
As you might imagine, he was not willing to do any work with me on this, and our conversation ended thusly:
Subject: Re: Your piece today
From: Orac
Date: Fri, 28 Aug 2009 09:13:08 -0400
To: Ginger Taylor
Ginger,
I do not "hate you." That is a massive straw man argument (and, boy do you love the logical fallacies, as I pointed out how many of them you used in your post to AoA, along with canards such as "science is a religion," etc.). It's such hyperbole that it simply reinforces my point about your being far gone into the anti-vaccine movement to be persuaded. The evidence is there; it's been there for years; you simply won't acknowledge it.
David
Subject: Re: Your piece today
From: Ginger Taylor
Date: Fri, 28 Aug 2009 11:00:13 -0400
To:
So again... you are going to continue to ignore the entire point of my article, that you are alienating the public with your venom?
Is 'hate' to strong a word? What would be more appropriate? Contempt? Dislike? Pity? How would you characterize the emotion or state of mind that you have towards me and my community that allows you to believe it is ok for you not to consider us?
And if you count me, a mom who has partially vaccinated her son as "anti-vaccine" then who else is anti vaccine? Anyone who does not stick to the CDC schedule? So doesn't that make a large and growing percentage of the US population "anti-vaccine" and not worthy of your consideration or respectful engagement?
My mainstream pediatrician told me he has a lot of concerns about the H1N1 vaccine and may not offer it. Is he "anti-vaccine" and "to far gone"?
Again... are you capable of any self-examination at all?
And that will probably be the last time I ever hear from him.
Sheril Kirshenbaum's response can be found on her blog in a piece entitled, "
Responding To Ginger Taylor: On Autism And Vaccination, Do Not Confuse Correlation With Causation" which is odd because first, she doesn't respond to me, she just says that she will let Orac respond for her (which I guess puts her name as a signatory on his blog post and makes her responsible for all his bad behavior and venom) and second characterizes my letter to her as making the arguement that correlation proves causation, which has nothing to do with what I wrote to her.
So I wrote to Ms. Kirshenbaum and asked the following:
Subject: responding to your response
From: Ginger Taylor
Date: Wed, 26 Aug 2009 13:36:46 -0400
To: srkirshenbaum@yahoo.com
Sheril,
I have not had a chance to read and respond to David Gorski's piece, and likely will not have the chance to do so until my children return to school next week. I wanted to leave a note on your blog piece, but apparently I have to pay to subscribe to be able to logn in and comment?
But I wanted to ask you, was there somewhere in my piece that I suggested that correlation equals causation? Correlation is certianly a big hint that their may be a causal effect that needs to be searched out, but I am not suggesting that correlation alone equals causation and I never have.
Pleas email me and let me know if I worded anything in my piece that made you thought I was saying that so I can correct it.
I will respond as soon as I can
Thank you,
Ginger
She responded with a short email saying that she and Chris were traveling, but I can't seem to find it.
So a few days later I wrote:
Subject: my comment on your post
From: Ginger Taylor
Date: Sun, 30 Aug 2009 12:25:23 -0400
To: Sheril Kirshenbaum
Sheril,
I posted this today on your blog, as I had not heard back from you privately. I wanted to make sure and email it to you so that it didn't slip passed un noticed.
Thanks,
Ginger
Sheril, (and Chris)
It has been a week since I wrote my open letter to you and Chris, and I have not heard a response from you yet. Do you plan on responding to it yourself?
I see here that you linked to Orac’s response. But I didn’t write the letter to Orac, and was not looking for a response from him, as he did not make any statements in the LA Times. Nor did I address the letter to any of your readers/commenters or other bloggers.
Please note that one of my charges in the letter is that those the skeptic brand of science, of which you identify yourselves to be members, tends to ignore and malign their critics rather than responding to their earnest concerns and questions. I wrote that this dismissal may in fact be the reason that the public is ignoring your community and their pronouncements.
It has been a week since I wrote that piece, and you and Chris have responded by in fact, ignoring my earnest criticism and questions and pointing to another author who is maligning me.
So I wanted to ask you the question publicly that I have asked you privately.
Do you plan on responding to the content of my letter?
And do you plan on doing any self-evaluation to see if my critique of the problem of the disconnect between your community and the public is indeed a valid one?
Or is your link to Orac and his position (that I just don’t count) your answer?
Additionally, as I didn’t get a private response to another question I sent you, I will post it again here. I don’t believe that correlation equals causation (but it is of course a big fat clue as to where to start looking). I don’t think that I gave the impression that I believed that correlation did equal causation and asked you to point out where you think I did (as I would like to correct that impression if I gave it).
Can you point that out for me?
Thank you,
Ginger Taylor
She never responded, but she is back blogging about Filet-O-Fish sandwiches so I assume she is back from wherever and just has decided not to respond.
And finally Virginia Hughes had the misfortune of contacting me and adding the cherry on top of my angry cake, by pretending to be the same earnest, perky, unbiased science girl as she did when she contacted me two years ago.
Subject: An urgent request
From: Virginia Hughes
Date: Tue, 8 Sep 2009 20:01:05 -0400
To: Ginger Taylor
Hi Ginger,
Not sure if you remember me -- I'm a freelance reporter who interviewed you a couple of years back for a Nature Medicine article about autism and vaccines.
I'm writing now with a personal request. I've been asked to be part of an ethics panel at a Cold Spring Harbor conference on personal genomics next week. Because I've written a lot about autism/schizophrenia, they've ask me to comment on what I think is the current and future appetite for genetic testing among people who belong to disorder advocacy organizations, including autism.
There is very little data/research on genetic testing issues and psychiatric disorders, and I'd really like some numbers to solidify my thinking. So I'm asking a handful of popular autism bloggers to direct their readers to a (short!) survey on the topic of autism and genetic testing. Would you be willing to do this? This is the link:
http://www.surveymonkey.com/s.aspx?sm=1uqoCG3L56EMDV7MSMKXbA_3d_3d
I will, of course, share the survey results with you after next week. Hopefully I'll get a few hundred responses and we'll be able to uncover some meaningful trends.
I'd be very interested in what you (as a parent, advocate, and blogger) think about genetic testing for autism, too. Perhaps you could send me some thoughts, or maybe we could chat about it sometime this week?
Thanks for your time!
Best,
Ginny Hughes
But unfortunately, nice, helpful Ginger that was once as young and carefree as Ginny is has gone the way of her son's eye contact and there was only this cynical old lady to answer her:
Subject: Re: An urgent request
From: Ginger Taylor
Date: Tue, 08 Sep 2009 22:05:04 -0400
To: Virginia Hughes
Well Ginny, I am a bit torn.
Yes, I remember you well. If memory serves you interviewed me for at least an hour, during which I gave you a good deal of information, and your piece left out all of it, save one quote from me about as powerful as, "the sky is blue". As I remember I gave you information that would have countered much of what was written about in your article, but didn't make the cut, so that wrong assertions went unchallenged. I remember that your piece treated us like we were just sad little nut-jobs.
I don't find you to be an earnest reporter.
Hearing that you have been chosen for an ethics panel that may have an impact on how autism research dollars will be spent (or wasted) honestly makes me want to cry. We don't need more people in autism research who are looking to pad their resumes and be popular with David Gorski (Medicine's Bitchiest Hairdresser**). People who write hatchet pieces about the things that are making our kids sick and the interventions that are saving them, and then move on to the next think that will up their profile are not the people who are going to stick out their necks (or careers) in order to find the truth no matter how much it costs them personally. Our kids are very sick and some are dying. I don't want anyone who is not kept awake at night by that horrible truth making ethical decisions about research.
I have two friends whose autistic children have died since you wrote that article. One was a class mate of my son. And you are exploring whether or not autism is a 'matter of identity'?? Wow boy... that is science writing in the service of man kind. Please Ginny... tell me more about how my son can get his identity by throwing glass bottles out of second and third story windows, running into traffic and pooping outdoors. 'Cause that was our week here at chez Taylor.
Here's a little tidbit for you to write about. Children with autism can't get life insurance. We tried to do so for my son, but no company will insure him until he is ten. Why? Cause our kids die. Wanna know the real death rate for children with an "autism" diagnosis? Ask the company with the actuarial tables who actually have to take responsibility if they die. They don't cover out kids because they would have to pay out too much.
But if I don't share your information to my community, then people who care nothing about treating autism (like [one dad], whom you seemed terribly impressed with, who has publicly stated that he has never even looked into speech therapy for his daughter) will dominate said poll and it will be used to support funding the same useless genetic studies that have wasted decades and millions and not born even ONE applicable result. And claim to exonerate vaccines in the process, even if the research does not actually exonerate vaccines.
It is truly an insult to my intelligence for you to contact me again and pose as an objective reporter who is really interested in what my community thinks. You know damn well what my community thinks.
And what of Cold Springs ties to eugenicists who advocate prenatal genetic testing for the purpose "curing stupidity"? Real excited about their genetic research, boy howdy.
I just wrote a piece in response to Chris Mooney's (and your friend Sheril's) book interview in the LA Times. I would encourage you to read it as you seem to be in the same cavalier place as he is. Who cares if your writing ends up taking a life, right? People just need to listen you guys 'cause you are smart.
Any way, why are you using advocates opinion to drive research? Shoudn't CSH being going where the science is going? "Autism" is not one physical syndrome, it is many. Taking a survey on where "autism" research should go is about as wise as taking a survey on where "cancer" research should go. Which type of cancer are we talking about?
What is being commonly diagnosed as "Autism", the thing that my son has, is not a "psychiatric disorder". It is a whole body disorder that effects the brain. As long as you are thinking about this in arcane paradigms, you will continue to do damage to our children. To my son.
Just take all that research money and make a bon fire with it. It will do more good.
Please... I mean this sincerely... please quit. You are not someone that will help my son or the hundreds of thousands of children out there like him. The questions on your form show that you are not even in the same ball park with those who are actually improving the lives of people with "autism". You have no business here. You can't even write an objective article that actually examines both sides of the debate so by no stretch of the imagination should you be involved in research of any kind.
PLEASE... politely decline this post and stop writing about autism. I don't want any more teenagers, trying to prove they are clever, in charge of my son's future and influencing parents whose children are not yet born.
Because is it our community, parents like me, who have to clean up your mess. You write your trite little articles, have coffee and pat each other on the back for being all 'sciency and stuff', but I don't see you or your friends any of our kids IEP's, diapering them at three in the morning, spending hours searching for them when they are lost, rushing them to the emergency room when they have their seizures, crying with parents at their funerals.
Find a nice little niche for yourself where you won't hurt our children.
Sincerely,
Ginger Taylor
Her response in which she pities my readers for not being able to take part in her presentation:
Subject: Re: An urgent request
From: Virginia Hughes
Date: Wed, 9 Sep 2009 08:55:17 -0400
To: Ginger Taylor
Hi Ginger,
I'll refrain from launching into a long defense and just let my writing speak for itself.
As for the poll, I'm truly sorry that some of your readers won't have the opportunity to make their opinions heard on this controversial subject, particularly because I plan to talk about many different sides of the debate in my presentation.
Ginny
My responses:
Subject:Re: An urgent request
From:Ginger Taylor
Date:Wed, 09 Sep 2009 08:57:53 -0400
To:Virginia Hughes
Do plan to be as biased as you were in your last article?
and
Subject: Re: An urgent request
From: Ginger Taylor
Date: Wed, 09 Sep 2009 09:05:49 -0400
To: Virginia Hughes
Also, please make sure to include in your presentation the fact that members of your community, and you specifically, have been so disingenuous to our community, have failed to properly investigate our claims, insult us and show such blatant bias, we often decide to stop working with you and focus our resources on efforts that will actually improve the lives of our children.
I would think that this information might be the most important piece of information that you can offer them.
Ginny's defense of her professional behavior:
Subject:Re: An urgent request
From: Virginia Hughes
Date:Wed, 9 Sep 2009 09:05:15 -0400
To: Ginger Taylor
Ginger,
I'm not sure if you know this, but I've written dozens of articles about autism and its many behavioral, biomedical, cognitive, and yes, genetic facets (http://virginiahughes.com/all-clips/autism/). This morning, I re-read the Nature Medicine article that quoted you; I think you should review the quotes I attributed to you in the piece, and my other articles/blog posts, and then reconsider your lengthy attack on my work. I understand that these issues are deeply important to you and other parents of children with autism, and I don't take your son's plight lightly.
As a journalist who takes my profession quite seriously (and a science-minded person who takes autism research and the ethics of genetic testing quite seriously), I will of course strive to be as objective as possible in my talk.
Ginny
My response to Ginny, who clearly has no clue of the damage that she is doing from her ivory tower.
Subject: Re: An urgent request
From: Ginger Taylor
Date: Wed, 09 Sep 2009 09:59:19 -0400
To: Virginia Hughes
Dear Ginny,
Bullshit.
As a psychology writer, surely you know that the best predictor of future behavior is past behavior. Your past behavior, including some of your blog articles that I have skimmed, has absolutely taken autism lightly, even calling the autism epidemic "specious" despite the UC Davis study in Jan that showed that the increase was real. Your past behavior is to ignore evidence of a vaccine autism link. Your past behavior is to treat the first hand observations of very invested parents as dross.
And why shouldn't you? If you are totally and completely 100% wrong, you will bear absolutely no consequences for it.
Ten years from now when everyone finally admits that, yes, what was being diagnosed as "autism" was vaccine induced encephalopathy and vaccine induced Acute Disseminated Encephalomyelitis, and acquired mitochondrial dysfunction, and mercury poisoning, and adjuvant induced autoimmune disorder and half a dozen other medical conditions lumped into one stupid category called "autism" (which is about as scientifically accurate as diagnosing every female that looses consciousness with "the vapors"), and that, yes we were really wrong about the fact that almost all these kids could have stayed healthy, no matter what their genetic makeup, as long as they were not victims of environmental insult like vaccinations, and when more kids have died from disease because the distrust in your brand of bullshit "science" in which half of observable data can be ignored my merely calling the reporters "desperate" and/or "greedy" has lead parents to stop vaccinating all together, you won't have a thing to worry about. Because you can still cash your check, sit at Starbucks with your "sciencey" friends and shrug your shoulders and say, "well we went on the best information that we had at the time, pass the sugar", while I will be attending another funeral of a child that was born AFTER you started writing about autism, that could have lead a long and healthy life.
Tell me, since you have decided to be an autism science writer. Have you taken a week or so and spent time with a family that believes that their child's autism was vaccine induced and seen the difference in them, first hand, when they implement biomedical measures? Or when they go off their diets, their belly swells up like a bowling ball and their behavior completely goes to hell? Or when they start chelating or go GFCF and their child's seizures end? Spent a few hours looking at before and after videos? Or are you just following the lead of "Orac" and Dr. Offit, who write at length about how these causations and treatments are bogus while admitting that they don't treat or know any kids with autism, but feel qualified to dismiss an entire emerging field of science because they read some stuff and heard some stuff?
A wise man once said, there are many things that you can be wrong about, that won’t cause that big of a problem. But that there are a few things that are so important, the consequences of which are so dire, that you can’t just THINK they aren't true, you have to KNOW that they aren't true. Whether or not parents like me are right, and scientists who have a crush on genetics and want to attribute everything to it are wrong about autism, is one of those questions. The research that would answer those questions is not being done, in favor of yet another useless gene study. Yet you, in your writing, clearly believe Offit's bullshit, completely unscientific statements, bought and paid for by Merck, that vaccines are not associated with autism and all relevant questions have been "asked and answered".
Despite the fact that the federal government keeps paying our kids for vaccine injury.
But we all know full well that if you got up and said, "you know... I have taken a second look at this with fresh eyes, and these families and their docs and a growing body of well respected researchers and physicians have some points that should be examinated more closely", they would say, "Thank you for your time Ginny", show you the door, and your phone would stop ringing. There is little tolerance for independent thought in your world.
Fortunately for you, like I said, you are accountable to no one, save your own conscience, which has proven not to be burdened on whether or not you might be wrong and extending and contributing to the autism epidemic.
Enjoy your useless committee that will waste more of the money that should be going to serve our sick children. Hope it pays well.
Ginger
And that is the last of it between "Ginny" and me.
If you are an earnest scientist or journalist or science journalist who is hold themselves and their colleagues to the ethics of your profession, earnestly evaluating all the observations that are being made and are humbly working in the service of the public and individuals (and I know and know of many of you) this post is not about you. As I have often encouraged you before, I will do so again now. Wise pediatricians, physicians, researchers, scientists and journalists, rise up and take back your professions.
If you are someone who has improved the health and functioning of children with autism, thank you, thank you, thank you.
And if you are a whistleblower, God bless you. May you get vindication and twenty million dollars.
But for those of you in the skeptic community or are disciples of "Orac" who want to roast me over this, fine. I got it, I am a stupid, ignorant, mean, hypocritical, lazy, evil, dangerous idiot... I am all these things and more. As a Calvinist, I can do nothing but fully agree with you. "The heart is deceitful above all things, and desperately wicked: who can know it?" I am sure that I will never be able to examine the depths of my own corruption.
And I am sorry that I am not a nice person any more. Once upon a time I was a lot of fun.
But concerning the matter that Chris Mooney raised, your opinion of me doesn't matter, because I am not trying to sell you anything. I am just a random mom with just enough education to be able to ask questions and see that you have few good answers.
But the public's opinion of you does matter, because you are trying to sell them something. Your view of science.
There is an old adage, "People don't care what you know, until they know that you care". It is abundantly clear from the last six years of my life that those who identify with Skeptic Brand Science, don't care about people like me or care what we think.
And that matters, because according to Chris Mooney, I am your target audience.
I was your target audience audience.
Follow Up: After I posted this article, Dr. David "Orac" Gorski sent me a flattering email saying he had actually always respected me and asked me to remove the piece. When I declined, he let the insults fly again. So... not the most honest and straightforward guy.
A few months later, we learned that Gorski has spent the last several years
developing a drug for vaccine maker Sanofi, which he had some how forgotten to mention in his hundreds of posts about these issues, so I do feel a bit the sucker for approaching him as if he was actually a somewhat disinterested party in this debate. Had I known I would not have wasted so many hours trying to have a real discussion with him, but live and learn I guess.
** Update and retraction, 6/2/18:
So God has been doing a lot of work on me about what it means to "love your enemies and pray for those who persecute you", and on "speaking the truth in love." Name calling like "Medicine's bitchiest hairdresser" is none of those things, and so I want to retract my name calling. Gorski's behavior is petty and cruel, but God has called me not to return evil for evil. So... retracted.
