NIH Director Francis Collins Blames Resignation of Top Health Official from Autism Panel on “Tension and Lack of Trust
Managing Editor's Note: David has added significant info at the end of this post.
By David Kirby
On Saturday, Story Landis, PhD, director of the National Institute of Neurodevelopmental Disorders and Stroke, an agency of the National Institutes of Health, abruptly resigned from the federal government’s premiere autism research panel – the Interagency Autism Coordinating Committee (IACC) – citing embarrassing notes she had left behind at a recent meeting.
But now, the Director of the NIH, Francis Collins, has come forth to blame “tension and a lack of trust,” (presumably among autism parents) for forcing Dr. Landis’s resignation.
Dr. Landis resigned from the powerful panel on Saturday after the Age of Autism blog published handwritten notes – assumed to be written by Dr. Landis – speculating on the motives of an autism mother and IACC member, Lyn Redwood – who wanted research into autism as a multisystem biological disorder, as opposed to a purely mental health disorder.
For more details on Dr. Landis’s resignation from the IACC, please see HERE.
Meanwhile, Dr, Francis Collins, head of the NIH, has spoken out on the resignation of Dr. Landis from the IACC, in a video clip posted by the Simons Foundation Autism Research Initiative: HERE.
Dr. Collins called autism a “disease” (as opposed to a disorder) that “ravages” children with autism, and that parents have “understandably” been left frustrated and impatient. He also rightly stated that we need to “poke around in every possible way” and not assume that there is just “one path” to solving the riddle that is autism.
But, some parents also wonder, was the NIH Director admonishing them for making Dr. Landis feel it was “necessary” for her to resign from the IACC? Was Collins also demanding that parents “step back?”
It is not possible to tell from his rather vague comments. I will ask for a follow up interview to elicit more context for his remarks, which were as follows:
“Clearly the area of autism is one where great passions have come to bear, and you can understand that. Parents who have kids with this disease, who have seen every day the ravages that this has brought down upon the heads of their child and on themselves, are impatient, and understandably so. Frustrated, and understandably so. And different perspectives about what is the right direction to take have certainly bubbled up at the IACC at times, in a rather tense way,
The recent experience where Dr Landis found it necessary to resign from the IACC is just one example of the level of tension and lack of trust that seems to have appeared in that environment. My hope would be that this experience might cause people to step back a little bit from the intense battles that seem to be going on and say, “Wait a minute, what can we really do here that is the right thing to do to get the answers?” That’s what we all want. I know that is what everybody wants. We don’t know what the answers are right now. And so it’s critical to poke around in every possible way that might give those answers, and not assume that there’s just one path that’s going to get to the truth.”
Time will tell if Collins is able to resolve all the “tension" and "lack of trust" among parents, but he has his work cut out for him.
“This is disingenuous condescension on the part of Collins. Step back? Who manipulated the agenda, both procedurally and substantively, to make sure vaccine research would not happen?” Robert Krakow, an attorney and the father of a child with regressive autism told me.
“Step back?” Krakow continued. “After years of inaction? My reaction to Collins is that we should step up, not back, and intensify our advocacy, not temper it. His words are too little, too late for us to put our trust in the NIH. They have had their chance. They have lost our trust. Now someone at NIH needs to step up to do the right thing. That burden should not be on beleaguered parents who are seeking answers from the ‘experts.’"
And Sallie Bernard, an autism parent with the Coalition for SAFE MINDS, attributed parental impatience and frustration to “15 years of NIH autism plans and millions spent with only modest, incremental advances. We are at 1 in 100 children and NIH can’t explain why. Instead of asking parents to ‘step back,’ he should acknowledge the failures in NIH leadership, such as telling Congress that no extra money is needed for autism research. Dr. Collins could send a welcome signal to parents that NIH will do the right thing by finally holding its autism team accountable for real progress.”
But maybe Dr. Collins is preparing to do just that. And he might be more in agreement with these parents than other leading medical figures in the country, who still insist –despite mountains of evidence to the contrary – that the answers to autism’s mysteries lie almost exclusively in the human genome.
On Sunday, Dr. Collins gave a speech at the Society for Neuroscience meeting in Chicago, and, if you were to judge solely by the article written by (HERE) Virginia Hughes on the website of the Simons Foundation, you would surmise that his autism research focus is almost exclusively centered around genetics.
“Collins was head of the National Human Genome Research Institute for 15 years, and led the high-profile Human Genome Project, so he is no stranger to the limelight,” Hughes fairly gushed. “But as head of the NIH, in charge of a $31 billion annual budget, he is a powerful man with big ambitions.”
During his speech in Chicago, Collins spent a good deal of time talking about autism, "a disease of great public concern and great scientific puzzlement," he said. And, as Hughes wrote, “He said that high-throughput technology has already identified more than 50 (genetic) variations, both rare and common, linked to autism spectrum disorders. He added that $30 million dollars of funds from the American Recovery and Reinvestment Act will be used for full sequencing of target genes and, for a few individuals with the disorder, whole-genome sequencing.”
But Hughes failed to write about Dr. Collins’s dedication to studying environmental factors in autism as well. In another video clip of his interview with the Simons Foundation, the NIH Chief had this to say:
“There have been some insights, in some cases of children, of environmental or genetic contributions, but more still remain unexplained. But, in part due to the Recovery Act, NIH is beefing up its autism research to a considerable extent in several areas. One is to look at environmental factors that might play a role that haven’t been discovered. Another area is to study the interventions that have been proposed to see which ones work best for children with autism. And a third is to try to understand what the genetic influences might be…. But it may be that autism at the DNA level is not one disease, but it may be 100 or 1,000 different diseases, all of which have in common this effect on the brain.”
This wasn’t the first time that Dr. Collins recognize that autism “must” have environmental as well as genetic influences. Back in 2006, while testifying before the House and Senate Subcommittees on Labor-HHS-Education Appropriations, he said the following:
”Genes alone do not tell the whole story. Recent increases in chronic diseases like diabetes, childhood asthma, obesity or autism cannot be due to major shifts in the human gene pool as those changes take much more time to occur. They must be due to changes in the environment, including diet and physical activity, which may produce disease in genetically predisposed persons. Therefore, GEI (NIH’s Genes and Environment Initiative) will also invest in innovative new technologies/sensors to measure environmental toxins, dietary intake and physical activity, and using new tools of genomics, proteomics, and understanding metabolism rates to determine an individual's biological response to those influences. (HERE)”
Dr. Collins is on the record: 1) He recognizes that at least some autism cases have been associated with environmental influences, 2) He wants to study all potential environmental factors in autism, including toxins, and 3) He wants to study “proposed interventions” that can actually make with autism get better.
It is not clear exactly to whom Dr. Collins was speaking when he said to “step back” from the tensions at the Interagency Autism Coordinating Committee. But I do hope he will “step up” to convince scientists that the search for answers to autism’s “mysteries” is to be conducted as much in our modern environment (if not more so) than in our DNA.
David Kirby is author of Evidence of Harm, a founding contributor to Huffington Post and a contributor to Age of Autism. His next book, Animal Factory: The Looming Threat of Industrial Pig, Dairy, and Poultry Farms to Humans and the Environment will be released within the year and is available now for pre-order at Amazon.
In order for things to change, the studies HAVE to come from the government. And I have been active in writing letters calling for certain people to be removed from the IACC and other top level positions who I feel are not helping us get where we need to go. My problem is, in all sincerity, when I write my letters to the White House and NIH and my congressmen, and demand that these people be removed, who would I like to see in their place? Are there scientists and researchers that are high level enough with enough political clout to hold these positions that are out there either in universities or the private sector or even within the NIH right now that we would like to see elevated to chairman of the IACC? Who would be a good person to head the CDC and NIH? If Insel is out, who would we, as the biomed community, like to see in?
Posted by: Becky | October 23, 2009 at 09:43 AM
And I do believe there is a difference between being wrong and being evil. There are a lot of good people in public health that right now are wrong, and for them there is hope, in my opinion. Others, are may be truly evil. But they aren't just in big pharma, that are in the boards of global corporations everywhere.
And what if one day, God forbid, we find out that some supplement we've been giving our kids turns out to be harmful? What if years of supplementation with glutathione turns out to cause cancer? Does Jill James turn into a devilish profiteer who made a name for herself while poisioning children? What if she defends the use of transdermal glutathione a little longer than she should? Is she the devil, or just someone that tried to help people and ended up being wrong?
Posted by: Jack | October 23, 2009 at 08:50 AM
I didn't bring up Jesus to make any kind of religious arguement or talk about forgiveness, but only to say that in order to truly tackle autism we need to clean up our whole environment, not just vaccines. And to do it will take a figure of such dynamic character that he could be likened to Jesus. To do that we'll have to overthrow captilism and culture as we know it and I don't expect a government beurocrat to pull that off in six months time. The time it took to write the gospels was mentioned just to say that it takes a bit of time to change the whole world.
There are plenty of people on my own list that I will never forgive and you are entitled to yours but I just don't see how it helps. I'm just tried of seeing the constant attacks here of everyone that doesn't agree with us 100% instantaneously, and I'm not just talking about the IACC. Dr. Sears writes a book that I know has saved kids and has gotten parents thinking and look at the string of comments about him on AoA. Hate and vile....from our side. Just because he isn't as militant as we may be.
To be honest, Tom Insel has answered many emails from me. He has answered my questions and pointed out things they are doing that I would all approve of. I'm angered by and profoundly disagree with his refusal to study vaccines and I've expressed that. And maybe he's lying to me and fooling me into being optimistic about the committee but I don't understand why he'd take the time because I'm nobody. And my initial email to him wasn't even too nice, to be honest.
So, I have hope that with this steady accumulation of evidence about the biological nature of autism and it's roots in environmental toxins (see the new study about rates and proximity to superfund sites in Minn) and the vaccination schedule that this will all change. It is changing. And that with voices like Dr. Sears parents are beginning to question. And I hope that work funded by the NIH will help that even if a lot of dollars are wasted (which I believe they are). I suppose I may dumb to hope that, but quite frankly I think that is all we've got.
Posted by: Jack | October 23, 2009 at 08:38 AM
The person who cranks his A/C up isn’t actively engaged in deceit. I really am able to summon up only so much hate, witch though I might be. I can’t find it in me to hate them. It’s the people who are actively engaged in deceit--deceit that is causing devastation in millions of peoples’ lives --who I hate.
You frankly sort of lost me when you started talking about Jesus—maybe that’s because I don’t consider myself a Christian. (It was my impression that Jesus didn’t write the gospels. Why would we throw Him under the bus?) The whole forgiveness thing is something I’ve had a hard time fathoming. It’s just that it’s seemed to me, in my life, that there are things I’ve seen which should not be forgiven. Or at least there are behaviors that ought to be discouraged, if people hope to get along peacefully. I don’t believe that it is miraculous for civil people to live in a civil society. At any rate I’m not sure why you brought Him up. Perhaps you think we are all supposed to just sit back, do nothing, and wait for Him to appear and save the world, because it is all much too corrupt for any one of us to have any effect on.
I so often find it ironic that those high on the spectrum are said to have social deficits. I have been told that I am not on the spectrum, by professionals who ought to know. And yet, I find myself so often unable to know what is expected. One minute, I am being associated with witches and demons. The next, for the very same actions, it seems to me that I might be being accused of trying to be Christ-like, as though that were a bad, or at least a futile, thing to do. It would seem to be very difficult to know just what is the expected behavior.
So often I’ve seen people unwilling to speak what they believe, because they know it will put them in the minority. I don’t know, maybe that’s the only sane path to take, in a democracy where civil rights have been stripped from the minority. I just can’t get rid of this nagging doubt that, sane or not, that path is surely going to lead to a place that isn’t very pleasant.
You say that there are a lot of people who will need to go, in addition to Mr. Insel. I don’t deny that. I in fact would be happy to name my own list of charlatans who I believe should go if we ever hope to get at the truth about what is causing the increase in autism. Guilty of censorship, or thuggish intimidation toward those who would speak about vaccine safety, or the promotion or direct financial support of those engaged in censorship. I frankly would encourage you all to add anyone you like to your own list. Put it on paper or in a word file, it’s very cathartic. It seems to me we’ve focused here on Tom Insel because there are a great many people in agreement about him (democracy at work) and if, as a group, we’re going to accomplish anything we have to start somewhere.
Excuse me for a moment, before I go on with my list, while I try to decide what to wear. The witch costume? The demon costume? A long Jesus robe? Never mind it’s not quite Halloween yet and it’s five AM and I think I’ll just sit here in my jammies and finish my tea-- just little old embarrassing me in my frumpy housewife uniform-- and tell you again what I think.
Ms. Helmick, whose forum will post only ‘positive’ comments (‘Positive’ is when you edit out any truth about those engaged in intimidation to support the ‘it-can’t-possibly-be-the-vaccines-so-we-can’t-possibly-even-suggest-it’ status quo.), she would be there on my list of people who should go.
Ms. Szalkowski, on my list for the same reason.
Ms. Goldberg—I’m still owed an apology. You shouldn’t lie to people and you shouldn’t lie about them.
Mr. Gallucci, you say that you will not “shun a whole group of people simply because *I* happen to have issues with them.” And yet, you’ve said that you believe my story about what happened in front of the House of Blues. If it’s true, if you do believe me, then I would ask you this:
Would you have said to the Jews in the german holocaust “ Gee I’m sorry, but I can’t shun a whole group of people simply because YOU happen to have some ISSUES with them!”
Please don’t anyone tell me that I shouldn’t be dredging up holocaust analogies—that it is somehow a disservice to those whose lives were lost there. If you truly believe that vaccines could be significantly harmful and that they should be looked at as an iatrogenic cause in the autism epidemic, then the analogy fits quite perfectly. There have been hundreds of thousands of lives destroyed by deceitful people who knew exactly what they were doing. They in fact continue to do it. They do it for profit or because it is otherwise in their interest. I believe it is a disservice to the living not to point out the analogy.
Dr. Wiznitzer, Dr. Beth Bell; I could go on and on, but I don’t want to be accused of fixating.
First things first.
Posted by: Robin Nemeth | October 23, 2009 at 06:57 AM
"Back" is regressive.
Posted by: Step up | October 22, 2009 at 09:43 PM
What John Stone says.
Of course everyone knows that vaccines cause autism.
Vaccines cause brain damage--autism is a form of brain damage, immune damage, and/or gut damage.
I think that helps explain a lot of the reactions we get from parents whose kids are completely unaffected: survivors' guilt.
In any other instance where your kid gets hurt there's at least a nominally sympathetic response, and/or nominal agreement with your "story" of what happened.
With autism, a lot of the reactions from other parents can be explained by a combination of brainwashing, denial and survivors' guilt.
Posted by: Terri Lewis | October 22, 2009 at 05:05 PM
But I think what actually would be appalling now is if the future of vaccine damage research and clinical autism research was in any way postponed as epidemiological studies were put in motion, took multiple years and were likely fudged as previous studies. Everyone really knows that vaccines cause autism:
Studies of the effects of the extend schedule are important, and not only as regards autism - as Bernardine Healy has pointed out - but we cannot afford to see the agencies play for time again. Not with forecast expansion of the vaccine market (expected to double in 5 years), and Trojan horses like the swine flu epidemic, dramatically geared to bring about just such an expansion.
We need to have urgent good-faith commitment, not just concessions.
Posted by: John Stone | October 22, 2009 at 04:13 PM
Please support ARI's fund raising to get this large scale, independent study on vaccinated vs. unvaccinated through their Million Dollar Puzzle Piece Campaign:
It's time to fight the bullies!
Please spread the message.Thanks.
Posted by: Drielly | October 22, 2009 at 03:11 PM
Friends, In the end, what it all means is that they get to waste the 85 million dollars and we get to scrounge around and get the money together for the vax/unvax study and if we are smart, a lot more bucks for better PR. It is probably wishful thinking to imagine any other future scenario.
Posted by: Cherry Sperlin Misra | October 22, 2009 at 03:05 PM
I'm with Autism Grandma. I am a Grandma too and so far not affected personally by autism but my family and I have all experienced other types of vaccine damage. I'm a teacher, too, and I have seen all kinds of illness in children over the years that I'm certain is the result of vaccine damage. There is no other explanation for it. One only has to use common sense to suspect it, but we need to prove it. Only a thorough study of the vaccinated vs unvaccinated populations will do it. The autism community and other groups concerned about vaccines will have to do it themselves. The govt agencies will never do it and it is wasting everyone's time trying to convince them that they should. They don't want to do it because they know what it will show. We need a plan and we need it now. Just watching all the swine flu hysteria and talk about vaccines on TV makes me worry about the consequences to our entire population. This is sheer madness!
Posted by: CT teacher | October 22, 2009 at 12:53 PM
I can't really disagree with what you've said. Certainly, if they are only pretending to move in our direction, you're right, but I do think tides are turning and thought is changing.
But I also think that as important as vaccines are in the autism epidemic and as shameful as that problem is, it is just but a part of the problem. Take away vaccines and the problem doesn't stop. The problem is everywhere, it is our entire culture. From the foods we eat, the cleaners we use, the pesticides we use, the energy we use and on and on and on. And we've all been guilty. Where is our hatred for the paint salesman at Home Depot, or for Behr. Where is the hatred for the co-worker that turned the air down two degree allowing more mercury to be spewed into the atomsphere.
If Insel were to really do his job right he would a more tranformative character in the history of the world than Jesus Christ. And I don't think I'm even exaggerating. And hell, we would have thrown Jesus under the bus because after all it took like 50-100 just to get 4 gospels written. I just think it is a bit much to ask of one government employee and I think if we're waiting only for the full miracle we're going to have to demand the resignations of lot more than one Tom Insel.
Posted by: Jack | October 22, 2009 at 12:31 PM
Jack wrote: If we draw a line in the sand and say that everyone on the other side of the line is against us and our enemy.. if we gun down everyone that starts to walk towards the line… and then you got 4,000 angry, hateful emails…
Who is ‘gunning down’ anyone?
I just would like to know why it is that Ms. Landis spoke out in support of parents who say “lets look at the possibility of vaccine injury”, only AFTER she resigned. I think we’re all really getting very tired, Jack, of the innuendo that parents who support asking the question “are vaccines really safe, and if not shouldn’t people be saying so?” are all witches with brooms and pitchforks who are doing nothing but illogically spewing hate and making threats. It’s kind of like accusing anyone who has a legitimate question about our president’s actions in office of being racist. It’s not at all fair and it’s not nice. And I will always be willing to play nice with people who are willing to play nice with me, Jack.
The questions are simple, really. Is it harmful to people or isn’t it--the presence, in flu vaccines, of 25 mcg per dose of mercury? Are vaccines harming people instead of helping them? I know this one really scares people but I’ll throw it in anyway -- do the people who’ve profited from the vaccine program know that it isn’t safe but continue with it anyway?
There are people who say vaccines are safe. I have a problem with them but I will respect their right to voice their opinion. There are people who say they don’t know, and that’s fine too. Then there are the people who insist that we shouldn’t ask the question. They continue to lie, telling people that mercury is safe and never mind anyway because it’s been removed from vaccines, when IT HASN’T been removed from vaccines. These are the people who make me the most angry. However the people who say nothing when they know what is occurring are guilty, Jack. Haven’t you ever heard that saying, about how the only thing necessary for evil to flourish is for good people to sit back and do nothing?
It’s not what Dr. Collins supports or doesn’t support that concerns me. Ms. Landis was a member of the IACC. As such this put her in a position to have a great deal of responsibility over the futures of individuals affected by ASDs. Perhaps I’m missing something here. Is Dr. Collins a member of the IACC? And why is he speaking for Ms. Landis?
The fact of the matter is that when she was in a position to have some influence—while she was a member of the IACC—Ms. Landis did nothing to show her support for people who believe their child was vaccine injured. It was only after she resigned—when she no longer had the same input into how CAA money is to be spent—that she spoke out. That is quite simply too little too late. It happens over and over again with people who ostensibly support research into vaccine safety. When they speak their (so often newly found) beliefs, they suddenly find they’ve lost what influence they have, either voluntarily or not. And I won’t blame them for that, necessarily--not if they haven’t truly resigned but have instead been forced out. (I do understand that in the NT world ‘resigned’ often means ‘was fired or forced to leave’)
However, before she either resigned or was told to resign, it was my impression that Ms. Landis stayed on at the IACC for some time. All of the while saying NOTHING about her beliefs that vaccines are harmful. Why? I am willing to listen if she would like to explain.
These people aren’t walking toward our line, Jack. They are pretending. They are STILL pretending. The piper is going to have to be paid if people want their children back, Jack. You can’t pretend to pay him and expect results.
You really want to help your children if you believe that they were vaccine injured? This morning on C-Span I watched as Dr. Beth Bell of the CDC answered callers’ questions. One caller asked “so what’s in those swine flu vaccines, anyway?” Dr. Beth went on about the eggs they’re grown in, and other stuff like the live and dead viruses. Ooops, she just forgot to mention the mercury! (Which, btw, is present at twice the levels as in regular seasonal flu vaccines, if the package insert can be believed.) Ooops. It just slipped her mind I guess. “There’s nothing else really in there that matters much,” she said to viewers.
You really want to help your children, if you believe they were vaccine injured? Call your cable television provider. Tell them you’ve had enough, you’re not going to pay for cable television any longer. Tell them why.
Personally, I’ve had enough of the filth that gets wired into my home in the guise of ‘news’. I’m not paying any longer to help out those who are guilty of genocide.
Jack, you say we’ll be pretty lonely if we don’t show some tolerance. Tolerance for the people who’ve done nothing as hundreds of thousands of individuals were poisoned into oblivion, is that what you’re asking? I’m sorta used to being a tad lonely, Jack. It’s hard. But not as hard as the burdens some people have been saddled with.
You forgive whoever you want to Jack. I want people to explain what they’ve done and what they’ve not done. And I want people held accountable for the crimes they’ve committed. And I want the vaccine damage to stop, and I want the vaccine damaged to get whatever real help is available to them. Working with the people who have lost their credibility, who seem to have no real interest in accomplishing these things doesn’t seem like a good idea to me. I will give people respect for the things they’ve done, not the things they say and obviously only pretend to believe.
Posted by: Robin Nemeth | October 22, 2009 at 12:00 PM
I don't think Dr Collins ought to be scared off - it looks to me like (thanks David) he is concerned about the lack of focus on environmental issues (not only vaccines) which has been systemic, and perhaps he ought to cognisant of the brutal and prejudicial way the vaccine issue has been treated. There are even some signs that he is rather serious about ethics:
If he is serious, he ought not to be put off by the sharp words (even mine).
These are early days - we live in hope.
Posted by: John Stone | October 22, 2009 at 11:44 AM
Collins seemingly admits the need to "Poke Around" in the fields of "Environmental Factors" and "Environmental Toxins", however he seems very careful not to mention the primary word "Vaccinations" in this category.
It appears to me that his use of the phrase "Poke Around" is a Freudian slip, because that is exactly what they have been doing all along---Poking Around is exactly what I used to do when my mother told me to clean my room---just POKE AROUND and avoid getting it done---The verbal version of Poking Around is "Beating Around the Bush"---Meanwhile they continually throw us a few tidbits of false hope for the purpose of getting us all to Back Off.
The Vaccinated Vs. Unvaccinated Study will have to be accomplished by the Autism and Anti Vaccine Communities, otherwise if we keep waiting around for the government agencies to get around to doing this, all we are going to get is more Poking Around.
Posted by: Autism Grandma | October 22, 2009 at 11:27 AM
You're absolutely right. But they don't know what the right thing is yet. They are just starting to wonder if we're actually right maybe. They still need convincing.
Posted by: Jack | October 22, 2009 at 10:37 AM
if you said, "hey, let's just take a deep breath and think about doing what is the right thing to do" and then you got 4,000 angry, hateful emails, would you all the sudden be on board with the people that sent you those emails? Would that change your mind? No, you'd say, "to hell with crazy m-f'ers."
No you wouldn't say that. Not if you REALLY believed in doing the right thing. You would still go do it.
Posted by: Natasa | October 22, 2009 at 10:26 AM
I always love and understand the comments here, but...
If we draw a line in the sand and say that everyone on the other side of the line is against us and our enemy, no matter how close to the line they might be (Dr. Sears, Dr. Weil) and if we gun down everyone that starts to walk towards the line from really far away (Dr. Collins, Dr. Oz, your local Docs, maybe even Dr. Insel who does know of and support the work of Sue Swedo, whoever) because they are still far on the other side, well, it is going to stay pretty lonely on our side.
If we say "too little too late" to everyone that tries to move thought in the right direction we'll get nowhere. What matters is getting more and more people on board. Everywhere, everyday. If they are thinking in the right direction today, that's what matter today. So if...
"Dr. Collins is on the record: 1) He recognizes that at least some autism cases have been associated with environmental influences, 2) He wants to study all potential environmental factors in autism, including toxins, and 3) He wants to study “proposed interventions” that can actually make with autism get better."
That is good. Let's build on that. We all agree with that. Let's f'ing support that thought. Let's f'ing let him know we're behind that and f'ing encourage him to work for us.
If you had some tough situation you were in charge at work and if you said, "hey, let's just take a deep breath and think about doing what is the right thing to do" and then you got 4,000 angry, hateful emails, would you all the sudden be on board with the people that sent you those emails? Would that change your mind? No, you'd say, "to hell with crazy m-f'ers."
Posted by: Jack | October 22, 2009 at 09:02 AM
Dr Collins, as in "it's critical to poke around in every possible way..." quote, I suggest you START A.S.A.P. by poking around the research carried out and published in the 60s and early 70s throughout Europe (both Eastern and Western parts), which looked at neurodevelopmental complications following vaccinations. And yes, some of those published papers do reveal AUTISM as the outcome.
The sort of research done and published at the time before vaccines became a sacred untouchable multi billion dollar global industry.
It would be a nice place to start. I hope your institutional affiliations allow you free access to those papers? If not I’d be happy to chip in with a few dollars, to cover the costs of purchase and photocopying. To get you started.
Posted by: Natasa | October 22, 2009 at 05:55 AM
Can someone please forward Dr. Collins a registration form for the next DAN Conference? I believe the next full conference is April 8-11, 2010 in Baltimore, MD. If I have to, I will pay for the man's gas bills for his drive from Washington DC.
At the 4 day conference, he could learn about all the SCIENCE behind autism, right along with the other parents and clinicians. I have volunteered at the conferences and have heard repeatedly from attending physicians what incredible science and studies the speakers and researchers are presenting. Why can Dr. Collins attend? Hell, he will even get his CME credits!
There! I just saved the taxpayers $30,999,700!!
Posted by: Jacey | October 22, 2009 at 12:26 AM
Dr. Collins, would those DNA level 100 plus diseases possibly be related to all the diseases our children's immune systems have been altered to avoid?
Posted by: DannysVoice | October 21, 2009 at 11:44 PM
AMEN Anne Dachel!
Posted by: DannysVoice | October 21, 2009 at 11:29 PM
It's been a very long day for me. During my "day job" in government service I often find myself in an advocacy role on various issues. It's amazing to me how similar the dynamics are, regardless of the issue. I'm starting to believe it comes down to a gross misunderstanding of what "service" really means, who the customers really are, and how much ego and self serving behavior really permeate our society. Who the heck else would the IACC be serving OTHER than families affected by autism? Why would ANY path be explored before those proposed by organized groups of affected citizens? What tax paying citizens affected by the disorder are requesting the paths they have taken thus far? Who have they really served for 15 years? Their own personal interests, beliefs, and the medical/ pharmaceutical industry. Unfortunately our current culture allows them to continue to think they are "serving" the public good while disregarding and discounting the input of those they are supposed to be helping.
Posted by: mlinn | October 21, 2009 at 11:26 PM
Find out Dr. Collins shirt size and send him a T shirt with Mark Blaxil's comment on one side and Sue's comment on the other.
Nominate Katie Wright to run the IACC. It will take someone of her tenacity to make up for all the years of Insel's obstructionism and incompetence.
The phrase that got me like others have mentioned "poke around" .....as in beat about, beat the bushes, burrow, delve, dig, explore,feel around, feel for, forage, frisk, fumble, go through, grabble,
grope, grope for, hunt, look around, look round, look through, nose around, poke, pry, pry around, research, root, scrabble,
search, search through, smell around. It almost sounds like he's looking for someone's lost wallet, not a cause, treatment or prevention for the epidemic of ASD.
I don't think Dr. Collins has clue and is so clearly confused or lost and it appears that he doesn't have enough grounding for what he is looking for or how to find it.
Posted by: michael framson | October 21, 2009 at 11:05 PM
The "right direction to take" is looking at ALL possibilities, NOT just the ones that the money leads them too. For God's sake!!!, the minds of our nation's children are at stake!
Posted by: DannysVoice | October 21, 2009 at 10:07 PM
How many times are Jim Carrey's words going to be perfectly appropriate? "We are not the problem. The problem is the problem". Can we get that printed on some T-shirts?
Posted by: ginnie | October 21, 2009 at 08:53 PM
I didn't even get past the headline of the article....
NIH Director Francis Collins Blames Resignation of Top Health Official from Autism Panel on “Tension and Lack of Trust"
...before I snorted lemon-lime pop out of my nose. Coughing and sputtering, I will now read the rest of it. Tension and Lack of Trust...hahahahaha. Really? Ya think?
Posted by: rileysmom | October 21, 2009 at 06:26 PM
I'm so tired of all of this.
It is hard enough to just get through my day without all of this discouragement.
How am I supposed to take care of my son without any hope that it's going to get better?
Posted by: Dawn | October 21, 2009 at 02:53 PM
Collins speaks about parents who have "kids with this disease [autism]," who are impatient and frustrated--"understandably so." He says there's "tension and a lack of trust that seems to have appeared" at the IACC.
He advises that we "step back" and consider, "What can we really do here that's the right thing to do to get the answers? That's what we all want."
Collins proudly announces, "We don't know what the answers are right now. So it's critical to poke around in every possible way that might give those right answers and not assume that there's just one path to get to the truth."
WHERE IS THIS MAN LIVING?
He sounds like he just found out there's controversy on the IACC.
Tension and a lack of trust...."seems to have appeared"?????
None of these people want real answers.
What does he know about frustration felt by autism parents?
What does he care?
These people have spent years denying there was any problem.
NOT ONCE HAVE THEY CALLED AUTISM A CRISIS.
NOT ONCE HAVE THEY ADMITTED THE NUMBERS ARE INCREASING.
COLLINS WANTS "TO POKE AROUND" ????
WE SHOULD BE MOVING MOUNTAINS TO STOP THIS NIGHTMARE FROM AFFECTING MORE KIDS.
WE SHOULD BE MAKING A NATIONAL EFFORT TO RECOVER CHILDREN.
INSTEAD WE DO NOTHING...THERE SEEMS TO BE NO SENSE OF SHAME FOR THESE PEOPLE TO TELL
US OVER AND OVER THAT NO ONE KNOWS WHAT CAUSES AUTISM OR HOW TO CURE IT.
THE ONLY THING THEY'RE SURE OF IS THAT THEY'RE SCARED TO DEATH TO LOOK AT VACCINES!
Posted by: Anne McElroy Dachel | October 21, 2009 at 02:44 PM
If you can't stand the heat, get out of the kitchen...enough said...
Oh, and get this one, this is a beaut...please write these people!
Posted by: Kathy Blanco | October 21, 2009 at 01:16 PM
Now Sue Swedo from the NIH/NIMH seems to be cut from a different cloth--she presents at DAN! conferences and seems very sympathetic to non-genetic causes of ASDs. Her particular area being PANDAS. So, is this a case of the left hand not knowing what the right hand is doing? Is NIH so huge and bureaucratic that Francis Collins has no idea what one of NIH's principal investigators does as part of her research?
Posted by: Dee | October 21, 2009 at 12:48 PM
What an amazing series of comments in response to Dr. Collins' condescending double-speak.
Posted by: Twyla | October 21, 2009 at 11:25 AM
Dr. Collins forgot to add the word IATROGENIC in front of disease.
Doctors have a lot of be ashamed of.
Posted by: Maggie | October 21, 2009 at 10:44 AM
How much longer will tax-funded public servants like Collins and Landis dance around the obvious, doing the anything-but-vaccines tango?
How difficult is it to simply listen and believe parents and medical professionals who witness and report children's regression following vaccination?
Why do seemingly humane "health care professionals" choose to create convenient fictions rather than facing the 1-in-91 truth?
How long can will their consciences allow them to maintain these pretenses that devastate lives medically, emotionally, financially, utterly?
Why is the CDC manufacturing cold statistics instead of looking at medical records or promoting research to prevent future vaccine injuries?
Institutional denial is pathological. The system is sick, and sunshine is the best antiseptic.
Posted by: nhokkanen | October 21, 2009 at 10:24 AM
I'll have to give her a pass on the gaffe about "disease," surely she knows better right? I mean how could autism be a disease? If someone hits a child in the head with a baseball bat causing a severe brain injury, is the injury a disease? Disease huh? Well from some one of her position and authority I'm sure she knows what the truth is, that it's a disease, after all she was very clear in her statement, "We don’t know what the answers are right now. And so it’s critical to poke around in every possible way that might give those answers, and not assume that there’s just one path that’s going to get to the truth.” Disease huh? She must mean the genetic baseball bat disease.
Posted by: bensmyson | October 21, 2009 at 09:59 AM
I hope they all resign. What a waste of taxpayer dollars. I bet they all believe that the world is flat! Try looking at the unvaccinated population, try looking at toxicity which is killing people globally, try not injecting this toxic load of chemicals and crap into our children...Try finding a safe way to vaccinate. Try not working for Big Pharma. Try moving your big damn egos out of the way... Try practicing real medicine which heals humans and does not harm them. You are a group of dinosaurs and the ice age is coming....more and more and more people are onto all of you! Each day more and more people are unplugging themselves from the matrix! Move the hell over and allow some real doctors in to help our children and the planet. This panel is a damn waste of taxpayer dollars!
Posted by: claudine Liss | October 21, 2009 at 09:45 AM
Mr. Collins, why can’t Ms. Landis speak for herself?
You speak of parents who are ‘impatient and frustrated’. You’d better believe it’s understandable.
Let me make something clear before I say anything else. I have four children, and not a single one is diagnosed on the spectrum. And yet the frustration and anger I’ve experienced in my dealings with those who continue to apologize for the presence of a known neurotoxin in our vaccines is enough to make me damn near blow a gasket. The patience I’ve seen on the part of parents with children who were destroyed by these vaccines is nothing short of remarkable, in my opinion, especially if they have been treated anything like the way I’ve been treated. I’ve been shunned, lied to, lied about, threatened with arrest, censored, told to shut up and forced to shut up on internet forums, and all of this simply for posting factual information or for asking people, politely, if they would like some factual information about vaccines and vaccine safety.
I myself first became aware of the issue of vaccines and autism some five years ago. In those years I’ve learned that parents of vaccine damaged children have no rights in the same sense that everyone else in the country does. They cannot sue, in civil court, for redress for the harm that was done to their children. They must, thanks to Congress, go through the special Vaccine Court, where their cases are heard by Special Masters (a term that always leaves me visualizing plaintiffs as little doggies begging to be tossed a bone for doing their tricks properly, rather than as human beings), before they can sue in a regular court. And the people who manufactured these toxin laden products cannot, in the event of a declared public emergency (such as swine flu) be held accountable at all, again thanks to Congress. Congress has decided that vaccine makers are too big and too important to be allowed to fail. The industry which contributes the most in lobbying dollars to Congress just happens to be the pharmaceutical industry but I’m sure you’ll say that that is just coincidence.
For five years I’ve watched as the main stream media has pretended that there isn’t a respected scientist or doctor to be found anywhere on the planet who supports the tens of thousands of parents who’ve said “my child was fine, and then was vaccinated”. Anyone’s who’s made any attempt to follow this issue fairly would know that parents have a great many well respected and well credentialed doctors and scientists willing to back them up. Why does the main stream media continue to pretend that they do not exist? Oh gee do you think it might possibly have to do with the fact that the majority of commercials that I see on the nightly news cable channels, and the majority of ads in every news or women’s magazine I pick up are for pharmaceutical prescription drugs? How patient would you expect a person to be when, in between pharmaceutical commercials, the nightly news programs cover their travails with stories so biased that the NBC news broadcast which showed a bottle of thimerosal couldn’t even be bothered to have their cameraman pan out far enough to show the skull on crossbones on the bottle label? I guess I’m to believe that the producers of the show just didn’t think that this was information that parents might find important. I don’t know about the parents of the vaccine injured, by credulity can only be strained so far before it snaps.
I spoke with the late Dr. Bernard Rimland about autism on the phone some fifteen years ago, and although he didn’t say the word ‘vaccines’ to me during that conversation, I have little doubt now that he had his suspicions at that time. Don’t tell me that there weren’t other people who were suspicious as well. How patient would you expect somebody to be when it’s been at least FIFTEEN YEARS since doubts about vaccines were first raised, and still parents receive nothing but lies and disdain from their government health officials (that would be those people who insisted that their children must be vaccinated for the good of everyone—um, well, almost everyone), the vaccine makers, and the main stream media?
How patient would you have people be when every avenue toward justice that should be available to any American—that IS available to every American—has been blocked for them? How patient would you have people be when they are being slandered and censored and denied justice, as well as any help whatsoever from the public health system that asked them to sacrifice their child for the good of the herd?
In the five years that I’ve been looking at this issue I’ve received nothing but the most asinine responses to my legitimate questions about vaccine safety. Two years ago I spent some time trying to find the answer to a simple question—what percentage of flu vaccines administered in the US have twenty five micrograms of thimerosal in them? I asked this question because twenty five micrograms per dose is the level of thimerosal that was in the childhood vaccines that so many parents have said destroyed their children’s health. I asked this question because so very often on my television and my radio I have heard people saying “oh well, the mercury has been removed and yet the rates of autism continue to go up so therefore it can’t be the vaccines!”
The responses I got were-- excuse my language but I know of no other way to describe them-- sheer horseshit. (If ‘sheer horseshit’ sounds too vague and anyone would like specifics, I’ve kept a log of the phone calls I’ve made, here http://wideopenwest.com/~r_nemeth/clinic_timeline_dr.htm )
In particular I remember a conversation with a woman at the CDC. Just a simple answer to a simple question was all I asked—what are the odds that if I get a flu shot, or my child gets a flu shot—that that flu vaccine will have twenty five micrograms of thimerosal? I’d gotten so many responses previously that were oh so reassuring about the safety of the flu shots. The only problem was, I knew these responses to be either false of misleading. And so I said to myself just maybe a person who has put their reputation on the line by actually telling me who they are, before giving me information, perhaps they might be more willing to give me good information. And so, I began asking the people I spoke with on the phone for their names. Do you know what the woman from the CDC had to say to me? She said to me “oh we can’t give out our names!” When I asked her why not I was told “well, there’s a lot of crazy people out there. We’ve received threats.” When I said to her “have I threatened you?” I was told no, but still not given her name. I don’t remember the exact information that I got from her, but I do know that she never did answer the question—what percentage of the flu shots administered still have twenty five micrograms per dose of thimerosal?
So who should we hold responsible for this perceived lack of trust, I ask you?
So this has been the kind of treatment parents who believe their child was harmed by vaccines has received, if the treatment I’ve received has been any indication. They’ve been lied to and about, they’ve been told to shut up (I won’t say it the way it was said to me, with all of the expletives added in), they’ve been censored even by those who are working with organizations ostensibly attempting to help those with autism or who have children on the spectrum. I was once told that if I didn’t leave a public sidewalk where I was doing nothing but politely asking people “would you like information about vaccine safety?” that I would be arrested. I was then falsely accused of threatening and harassing people and the police were called out. I was informed by the police that I was actually within my rights to be there, on that public sidewalk, handing out information, and I was not arrested. However I was lied to and I was lied about and to this day have never received an apology for the treatment I received there that evening.
And now Ms. Landis is all upset because she feels that she’s not receiving the trust which she is entitled to? Aw, the poor baby!
Perhaps I’ll cry some real tears for her when she comes out from hiding and speaks thru her own mouth rather than someone else’s, and when she can explain to me why it was only after she was caught acting in such a despicable manner that she’s chosen to speak openly about her belief that perhaps vaccines ought to be looked at as a possible cause for autism, and why it is that it’s only AFTER she’s spoken about her belief that vaccines should maybe be looked at as a possible cause for autism that she’s decided to resign from the panel of people who are to determine how Combating Autism Act funds (or as the late Dr. Bernard Rimland called it, the ‘Pretending to Combat Autism Act’) ought to be spent .
Lack of trust? Give me a break. They were communicating snide remarks privately at a public meeting.
In my opinion the parents of the vaccine injured have shown way the heck more trust and patience than most of the people on the IACC and most of the public health officials and most of the pharma shills who profit from these vaccines are entitled to.
Posted by: Robin Nemeth | October 21, 2009 at 09:38 AM
Let us first agree that there is an epidemic, maybe even a pandemic, of autism in our country. The numbers, 1:91 and 1:58 males, are far too significant for the government to continue to deny the situation.
Since it is impossible for genetics to fully explain this ongoing catastrophe I would like to quote you from Sir Arthur Conan Doyle and The Sign of The Four; “When you eliminate the impossible, whatever remains, however improbable, must be the truth.”
Dr. Collins, look at the vaccines and look at them honestly. Vaccines save some lives, but they also destroy other lives. That is the inescapable truth.
Posted by: Harry H. | October 21, 2009 at 09:26 AM
So Dr. Landis resigned from the IACC because of pressure from parents of children with autism?? Funny, I thought it was because she got caught red-handed passing notes like a schoolgirl at a committee meeting. She got caught disparaging the mother of an autistic boy, a woman who has worked tirelessly for more than 15 years to try to save other boys from the same fate. Dr. Landis questioned Lyn's integrity, her dedication and her love for her child, and as a result, incurred the ire of a large community of parents who hold Lyn in the highest esteem. Dr. Landis, you have no one to blame but yourself for everything that happened since the notes (written in your hand, implying that you were discussing committee business with other members outside of meetings, which is against the rules) were discovered and published. End of Story.
Posted by: chrissie | October 21, 2009 at 09:26 AM
To Director of National Institutes of Health, Dr Francis Collins
Dear Dr Collins,
Re: How suspicion occurs
I write from the United Kingdom.
When my son was diagnosed, just 14 years ago next Monday, it was already an orthodoxy of autism science that autism spectrum disorders were the combined result of genetic and environmental factors. It also became evident early on, for reasons which remained unexplained, that many more cases were being diagnosed and there was a crisis in support services. The crisis has been prolonged and has become ever more frightening as so many of our children approach and attain adulthood.
One of the most perverse and unsatisfactory aspects of this story has been the tendency of the scientific community to shy away from examining the potential environmental causes just as incidence continued to soar. It is possible to identify three irrational and inter-connected programmes amongst health offficials:
1) To deny any link with vaccines
2) To deny there was any real rise in autism
3) To deny there was any connection between autism and bowel disease
It might be added that linking all these features has been the harassment and professional persecution of Andrew Wakefield and others, particularly in the United Kingdom. Looking at this history it is surprising that officials had to resort to the implausible claims (2) and (3) in order to defend themselves on (1), about which they might understandably, if not exactly honourably, be defensive.
And the result is a real human catastrophe the like of which we have never seen - one to which our politicians pay lip-service before moving swiftly on, and to which infinitesimal resources are devoted, compared with synthetic ones like the swine flu scare. Meanwhile, ordinary families - not to mention horrendously damaged children - have to accept the burden that the officials shrug off. The repulsive game of cat and mouse which citizens have had to play with Dr Insel's committee is a case in point. He should take responsibility and so should you.
Finally, I would like to point to a piece of research earlier this year which demonstrates how vain genetic research is in isolation, Campbell et al,'Distinct genetic risk based on association of MET infamilies with co-occuring autism and gastro-intestinal conditions'
At the same time we still have officials remarkably pretending that there is no connection between autism and bowel disease:
We have here the obscene spectacle of doctors walking away from children in distress and pain without ever having conducted the clinical research. On the other hand we have Dr Pat Levitt, senior co-author of the Campbell study declaring:
"We need to learn where toxins impact gene expression in order to find the cause of autism."
So, may we please now have an end to all the unpleasant procedural game-playing, and get on with the job.
John Stone (Contributing editor wwww.ageofautism.com)
Posted by: John Stone | October 21, 2009 at 08:30 AM
This seems like a smokescreen to the "it's not vaccines campaign and let's shut those parents up." It is beyond comprehension that they can deny the part vaccines play in the telltale signs (medical labs, multi-system dysfunctions that manifest into behaviors) and symptoms all of our kids share. That "one path that’s going to get to the truth” Dr. Collins,is the one path all of these agencies will not take.
Posted by: Teresa Conrick | October 21, 2009 at 08:08 AM
Dr, Francis Collins, head of the NIH: “Wait a minute, what can we really do here that is the right thing to do to get the answers?” Well, for one thing...the next time the IACC votes to conduct a study on vaccines...DON'T RECONVENE THE COMMITTEE TO RESCIND THAT VOTE....INSTEAD...DO THE DAMN STUDY!!!!
Posted by: Bob Moffitt | October 21, 2009 at 08:07 AM
The Interagency Autism Coordinating Committee (IACC) Truth is this Agency is perceived by many parents to be a whitewash / cover up, which explains the "tension and lack of trust". --- Parents are tired of a committee that wants to "poke around" but avoid doing anything meaningful. Robin Rowlands
Posted by: Robin Rowlands | October 21, 2009 at 08:06 AM
Hey Dr. Francis,
You are almost on the right track. Yes, the problem is a lack of trust. And high tension.
But these problems are not the result of stressed parents looking desperately for answers in all the wrong places. It is because of what seems to be a TOTAL disconnect between all the government employees tasked to looking into autism, and reality.
From the press announcements and goings on in public meetings, it seems pretty clear that not a one of you has actually READ and COMPREHENDED a darn thing that is being stated over and over and over by parents AND scientists AND doctors who aren't towing the "its all genetics, and vaccines are the greatest invention of modern medicine and their value should never be questioned" party line.
One begins to wonder, can you guys read? Are you capable of independent thought? Did you ever learn that science is actually about asking questions, questioning assumptions, testing hypotheses, making observations?
It is not about who has the biggest lab, the fanciest equipment, the highest number of papers published in the "highest impact" journals, or even who has the most popular, most widely accepted ideas. It is about SEEKING the truth!
When, if ever, you folks start actually listening to the dissenters, and genuinely considering that maybe, possibly, some of your most dearly held beliefs could be totally wrong, and maybe, possibly, some of the dissenters views could be wholly or partially correct--well, then maybe there will be a chance that you could slowly rebuild some trust. Maybe.
But should you fail to do so, should you just continue to pat parents on the head, while implying that you understand their stress and the reasons for their simple misguided suspicions and concerns....well then, I sadly fear that public distrust of government, and scientists, will fester and spread... potentially to the point of no return.
Candidate Obama said that science would actually be valued in his administration. I thought he meant real science, not contrived science, convenient science, corporate science, or cover-up science. Which is it that the NIH is going to do?
As head of the NIH, you have the power to steer the agency in a better direction. Genetics are an interesting, valuable, intrinsic part of biology, but you also must know that biology is messy and complicated. Living things are the product of genes AND environment. And the more we learn about genetics, the more it appears that genes are influenced by environment to a far greater extent than was previously imagined.
Biology, and real medicine, are sciences that include far, far more than genetics. The development of each organism is an experiment confounded by multiple variables, of which its genes are but one.
How about you NIH guys quit looking for answers in all the wrong places and start asking the questions and testing the hypotheses that have some hope of yielding a few real answers? Or at least, hire or appoint just a few people who truly, honestly, do want to find answers, and the truth--whatever that may be.
Posted by: Sue | October 21, 2009 at 01:52 AM
To Francis Collins,
This is not as difficult a problem as you're making it out to be. The tension you are experiencing is simply because autism parents are asking that NIH be held accountable for finding answers and NIH has failed miserably.
The way out is simple.
1. Stop wasting money on the Great Autism Gene Hunt.
2. Admit we have a problem. Autism rates can't go from less than 1 in 10,000 to more than 1 in 100 in a couple of decades because of "better diagnosing."
3. Put the lion's share of the investment into environmental causes and prevention. And into treatment of environmental injury.
4. Recognize that the medical industry is a big part of the problem--pharma, insurers, doctors' associations like AAP--and have the courage to investigate their role in the problem.
I know this pains you; after all, you sequenced the human genome and many hoped that autism would be one of the early victories from that work. Sadly, there are few victories coming from genetic disease research. We are simply accumulating knowledge without making meaningful progress in improving the human condition. Even worse, medical science is standing by watching the autism tragedy unfold and doing nothing about it (and in the meantime, it's hard to tell the difference between medical scientists and medical business people).
You are new to your job. But unless you take decisive action soon, you will own the autism failure at NIH, just as Tom Insel has come to own it now.
As the saying goes, the fish always rots from the head.
Posted by: Mark Blaxill | October 21, 2009 at 12:06 AM
"what can we really do here that is the right thing to do to get the answers?"
simple, get the RIGHT people on the panel
ask for Insel's resignation
Posted by: KC | October 20, 2009 at 11:24 PM