Today: Interagency Autism Coordinating Committee Meeting
Click HERE to tune into today's IACC meeting via webinar. Wednesday, February 4, 2009 9:00 AM - 4:00 PM EST
To discuss the Strategic Plan for Autism Spectrum Disorder Research and its updating, and to discuss recent autism-related Federal activities.
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Macintosh®-based attendees
Required: Mac OS® X 10.3.9 (Panther®) or newer
I just want to say, this list rocks, that's about it...I think you parents are way more intelligent than these walking morons.
It's obvious, that they are hiding facts, and the facts plainly state, at least to me, avoid vaccines, even if "fixed" and or slow...they are mankinds evil tool to control us, dumb us down, and sicken us. That's it...oh, and I was wondering if they would take the vaccines themselves by dose and weight...while having a cold virus shot up their nose at the same time...to replicate our children, somewhat (hopefully they also have a mouthful of amalgams too)
Posted by: Kathy Blanco | February 05, 2009 at 10:22 PM
Insel and the others don't realize that technology and social networking has outpaced their ability to keep a lid on their dirty secrets. They very likely do know, in minute and excruciating detail, the many ways that vaccines cause irreparable harm, but they think that we don't know and we never will find out because they think we (and all "disease vectors/potential vaccine markets") are a bunch of rubes. They foolishly think they have an impenetrable secret, and so they sit like smug little canary-mouthed cats. What do you suppose that meeting would have been like if the public knew everything single thing they did? Insel and crew better start thinking about that, because that day is coming. It's like that Time magazine cover for "Person of the Year" a couple of years back. The person of the year was "You" with a mirror on the cover. Our ability to acquire, analyze and share facts and data, to network with others affected similarly, to reach our legislators and organize opposition, and even to conduct independent research is starting to outpace their ability to lie. They fail to grasp this simple fact, and ultimately that will be their downfall.
Posted by: Garbo | February 05, 2009 at 02:34 PM
It's sort of like OJ looking for Nicole's killer...methinks Insel et al already know the answer which is why they don't want more research on vaccines safety. It would be self-incriminating.
I think parents should demand a congressional inquiry...
I'm starting a list of people who should be indicted for obstruction, deliberately misleading, betraying public trust and/or causing public endangerment:
Dr. Paul Offit
Dr. Julie Gerberding
Dr. Edwin Trevathan
Dr. Thomas Insel
Posted by: Sarah | February 05, 2009 at 12:24 PM
I enjoyed Dr. Noble's presentation. He offered something of a warning to Insel about the upcoming primate study and worldwide studies about thimerosal. Insel in typical fashion just ignored. Insel seems hell bent on not going vaccine studies. I guess we all know why. Insel KNOWSS and he seems ok with doing nothing. What an awful human being!!!
Posted by: Maggie | February 05, 2009 at 10:56 AM
I called in and listened via live webinar. Most people spoke without identifying themselves. Some highlights were as follows. A lady spoke and said that in New Jersey, autism rates are very high, and it's alarming. It was also mentioned that nearly all states said they were financially struggling, stating a combination of high unemployment in addition to the increasing extra services being required for individuals with disabilities such as autism.
Lyn Redwood of Safe Minds spoke, and once again did a fantastic job of speaking intelligently, eloquently, and accurately, representing the thoughts of the majority of those in the autism biomedical community. She questioned if the past research was progress, if it was a good "bang for a buck". I think her question went unresponded to. She brought a scientist, Dr. Noble (spelling ?) who described himself as a stem-cell researcher in scientific mainstream. He described how epidemiological studies are an "imprecise science". He actually went into detail on some of the often-cited studies used to argue that vaccines are safe. He spoke of several epidemiological studies done in other countries that are used as an argument to support vaccine safety. He spoke of the Denmark study. (It is my understanding that the Denmark study is the one taught to practitioners while they are in college to educate them that vaccines are safe because this is the study they quote whenever you bring the issue up.) Dr. Noble went on to describe how this study was flawed and so were other studies, implying better diagnosing and other reasons. He pointed out that autism rates can appear to be still climbing after the mercury was removed due to autism being detected more. At one point, he was asked by a lady in the meeting, how could the Denmark plus other epidemiological studies he spoke of, all be flawed? After talking about things he had seen in the research arena, he ended his answer with, "I don't know, we have to ask the others why they presented the data the way they did it." That was actually the answer I said to myself, while waiting to hear what Dr. Noble's answer would be. I would love to have Dr. Noble sit down at the table with those researchers. I would volunteer to take notes.
Dr. Noble then went on to talk in an extremely intelligent, impressive manner, about the importance of independent vaccine research to restore public trust. He mentioned independent research could be defined as research results that the researchers are not scared to publish. He stated, "Whatever you want to believe, I can find a study to support that". (Not only do I agree with that statement, but I have said it often, myself, when describing my thoughts on research studies.) Dr. Noble went on to say that it "reduces confidence of the scientific industry when the CDC has data on adverse effects of thimerosal, but can only get access to it if under the Freedom of Information Act". He mentioned that the vaccine safety research originally agreed upon, and then removed in the last meeting, was less than 3% of the total autism budget, inferring it was such a small amount of money for something that is very needed. It was further pointed out that many of the people opting out of vaccines have advanced degrees. Dr. Noble closed with offering to help with vaccine research.
After Dr. Noble spoke, Dr. Bruce Gellin, MD, MPH spoke. Dr. Gellin was described as the director of the National Vaccine Program Office as part of the Dept. Assistant Secretary for Health Dept. of Health and Human Services. He stated he had a big concern for the lack of public trust in vaccine safety. He further stated that in some places, the vaccine schedule is not followed as much as 25%. He actually seemed genuinely concerned about why the public would have such high distrust, and did appear to be open-minded to the situation. There was a web address shown in reference to vaccine safety: http://www.nap.edu/catalog/11234.html. Lyn Redwood included her view on possible reasons for the public's distrust, stating that parents don't trust the CDC due to financial ties, patents on vaccines, and lack of vaccine safety research. There was a lady who said that she had personally seen in other countries, diseases of poilio and measles, and that people in the U.S. don't know what that is like, so this may be why they don't feel the need for vaccines here.
In the end, there were a handful of people from outside the meeting who spoke. I was very impressed with their well thought-out comments and requests. The President of Safe Minds asked for reinstatement of vaccine research. The reply given to her by the Chairmen of the IACC was that it was still possible to do vaccine research the way the proposal is worded and that it had been voted on by the majority to change the wording. Thus, that was basically the reply to the various pleadings of reinstating the original wording on vaccine research. There were more requests, but they appeared to have gone unanswered. A representative from Autism Speaks also asked for reinstatement of the vaccine research which appeared to have gone unanswered. Another man spoke, a scientist. He stated he was going to make an announcement in 55 days on the cause of autism. He relayed it was related to the vaccines.
My observation on the meeting was that vaccines were allowed to be discussed, but there was no vote on whether to reinstate the original wording calling for vaccine research. It is my opinion that the meeting "appeared" to be appeasing to the public by allowing them to talk about vaccines, but actually not, since the reply was that it was already voted on in the prior meeting. I felt disheartened by this, especially since I saw reports that thousands had emailed the President and Congressmen concerning their desire to reinstate the vaccine-research wording. I feel like, once again, our desires are not attended to. This is a good example on why the public is losing trust in vaccine safety. Listening to these meetings has increased my distrust immensely. Safe Minds, Autism Speaks and Dr. Noble did a fine representation of giving hope to the public that there are intelligent, caring people out there fighting for justice. Amongst the dispair, I did see a possible glimmer of hope in all this -- the fact that the National Institute of Health is willing to receive reports from parents of recovered children. I have an email into them right now to see how they want us to contact them with that information. When they respond, I will let the public know.
Heidi Noyer, MS
Research Coordinator, LIA Foundation
www.liafoundation.org
Posted by: Heidi N | February 05, 2009 at 08:28 AM
There was a young guy and his mom spoke at the end when the public got to speak, about the young guy suffering from ADD & depression, this was for me one of the highlights of the day. The young guy when on to say, then it was found that he was suffering from mercury poisoning from thimerosal, his mom said that she and his dad was afraid that he may someday take his on life or spin his life in prison, but after year 1/2 of vitamin B-12 shots and glutathione he is now happy and now has above a B average.
I have said for years that I believe that mercury was the cause of most ADD & depression.
Posted by: Jeff R. | February 04, 2009 at 07:29 PM
I do not understand all the talk, on and on, about a totally non bias study. To me this is a, easy fix, you get some neutral people and some people from both side of the issue for oversight. Make all of then work close together and this should a good study.
Posted by: Jeff R. | February 04, 2009 at 07:01 PM
Dr. Gellin lamented the lack of trust the public has in the vaccine program. Eventually, non-stop lying leads to lack of trust.
Gellin's National Vaccine Plan website would likely argue that the statement at the top of its Autism/Vaccine fact sheet below is not EXACTLY a lie, because the concession in the Poling case is not "scientific evidence". But the statement below is much closer to a lie than it is to any form of honesty, and it's certainly bullshit.
NVP: "Is there any scientific evidence that proves a linkage between autism and vaccines?
To date, there is no conclusive evidence that any vaccine can cause autism."
http://www.hhs.gov/nvpo/factsheets/fs_tableVII_doc3.htm
Mark Blaxill discussed the government spin on the Poling decision here,
Hannah Poling was not really autistic. She just had “autism-like symptoms” or “features of autism.”
Sorry boys, but that’s just bullshit. In case you hadn’t noticed, there is nothing else that defines autism except a collection of features and symptoms. If you have enough features from the official checklist, then you have autism. It’s that simple.
http://www.ageofautism.com/2008/03/more-bullshit-f.html#more
Ginger Taylor made an excellent video about it,
http://adventuresinautism.blogspot.com/2008/03/julie-gerberding-admits-on-cnn-that.html
False reassurances about the safety of the vaccine schedule will not build trust.
Posted by: Kevin Barry | February 04, 2009 at 06:44 PM
About the MSG comments: I think it was John Erb, at least that sounds like what I heard him say his name was. He said: he was going to announce some time in the near future that he has identified "the cause of autism". While I think it's likely that MSG/glutamate certainly play some part I think it's extremely unlikely that there is any one single cause.
Posted by: ObjectiveAutismDad | February 04, 2009 at 06:06 PM
(I could not take detailed notes, but here are some bits that I caught, sorry about being out of sequence)
Yes - That was John Erb on MSG – He said he would announce the cause of autism in 55 days…
The woman mentioned below was about the only one I heard attempt to use PR to build trust. The answer to building trust is not in creating websites dedicated to the horror of diseases, it’s in getting the unfinished science done.
The young man who spoke with his mother was great.
Paula C. Durbin-Westby’s (ASAN) comment on the need for more research into different assistive communication technologies was well taken, and the panel’s decision to put that on the next agenda seems like the only thing they actually accomplished.
Peter Bell spoke about the AS response to the changes in January, how AS was involved from the beginning, and how the funding needs to be restored.
One person from the panel (chair?) spoke about how the plan does still contain $50 million in genetic/environmental research. I’ll let others interpret his comments. The guy Geller from HHS has a lot to say that was relevant, but the inefficient disconnects within the government are painfully obvious. Total train wreck. Hey, let’s form a committee!
Dr Mark Noble seemed to present a clear case for why thimeresol is still a question mark. He dismantled the Demark study and one other, and was then asked ‘do you have a hypothesis on how 11 studies could all be wrong’ from Singer. He answered by talking about how Uri Geller fooled scientists with his bent spoon trick – and how scientists are the easiest to fool because of how they think. He spoke about how his mathematical skills combine with his biological knowledge to see things that others miss. That’s his specialty. He would have done the studies differently. He also mentioned that his lab does not take any money from industry. He spoke about the need to have a group study the issue who had no strong convictions one way or the other.
What strikes me is a lack of urgency in all of this. Kathy Walker from Safe minds reminded the panel that this was not a game of hot potato. Those of you who have been in this for years have probably grown used to the pace of the government response, but I have not been numbed enough yet to accept it. There were some clear thoughts presented, but it seems the committee left without really moving the ball forward.
I like to put dollars on time – so here is my math.
A birth every 7 seconds
1:150 will have autism
$3.5 million lifetime cost per person with autism (I’ll use a third of that for this example)
Total autism cost per day of “we’ll get back to you“ - $96,000,000
For those who see meaning in numbers, that’s a satanic $66,666 per minute of delay.
Total national autism cost incurred during the 7 hour meeting alone – $28,000,000!!! Of course, we all know this money doesn't exist. Its just what it might cost if we gave kids and adults the services they needed, and what we loose in lost productivity. Its what families will do without. AS works all year to raise that kind of money to help. This committee blew through it in one unproductive meeting.
What are these people waiting for????
Posted by: jruch | February 04, 2009 at 06:01 PM
Was she a pharma shill...or maybe Allison Singer?
I could not believe this women and her same old blah...blah.
The rest of the group is talking about the viability of Noble's recommendation to put together a working group to get good quality independent studies done and she chimes in with (paraphrasing)"Today's parents are too young to have experienced the diseases like polio...so maybe if we educated them better they wouldn't hesitate to vaccinate."
Well first of all, most of the diseases we vaccinate against don't compare to the dangers of polio. Second, the conversation was not about improving vaccination rates. It was about how to accomplish studies that people have faith in. And her ridiculous, illogical comment did nothing to further the conversation at hand...the most beautiful part...she was completely ignored. Not one single person acknowledged her comment.
Posted by: Pamela | February 04, 2009 at 05:50 PM
Immediately after I heard John Erb speak about glutamate effect on developing brain cells and how there is MSG in vaccines, I went to the CDC website of vaccine ingredients and can find only 2 that contain MSG: Varicella and Flumist. However, I don't know how many contained MSG in 2000 when my son was vaccinated. Interesting data...
Posted by: Lisa | February 04, 2009 at 05:30 PM
To:was she a pharma shill
I would like to have told that "complete idiotic woman" that most of us will never believe vaccines are safe till Lyn says they are safe, so the best thing to do is, do the studies she wants done.
Posted by: Jeff R. | February 04, 2009 at 05:17 PM
Kelli Ann or anyone in attendance,
Can you tell us more about what Insel said in the opening about the vaccine research and the letters, specifically?
Did ABC stay for the entire meeting? Any interviews?
I called in during Noble's comments. He did a very good job debunking the thimerosal studies.
During discussion, someone commented that (paraphrasing) more attention needs to be paid to parents who report adverse reactions to vaccines because after all these parents live with and know their children. Wasn't that the gentleman from NVAC?
I thought I must be in the twilight zone between that comment and Insel stating that a study needs to be done involving kids who have "recovered". They sounded like people who were there representing our side. Some very interesting sound bites came out of this meeting.
When conferencing in it was stated that the meeting was recorded. Does anyone know if the audio will be available on the web?
Posted by: Pamela | February 04, 2009 at 05:14 PM
Is the audio of this meeting archived somewhere so that those who could not make it today can listen to the meeting later?
Posted by: Mariajose Romero | February 04, 2009 at 05:12 PM
Was it John Erb?
http://www.ageofautism.com/2009/01/his-name-was-bruce-he-was-always-ready-to-greet-me-with-a-smile-whenever-i-came-in-to-work-with-him-at-the-residential-facil.html
Posted by: To: About the MSG comments | February 04, 2009 at 04:58 PM
Peter Bell rocks some of the biomed community to sleep.
Posted by: Kevin Barry | February 04, 2009 at 04:42 PM
Maureen,
"The meeting has ended. Now what happens?"
I listened about 90% of the day, I am not sure anything happen today. This is like watching a snail cross the USA.
I have been to one of these meetings before, I sat there all day and it was like everyone was looking for a job that would last them the rest of there life, never mind we have children with autism that need help right now. I truly wanted to stand up in that meeting and just scream, what are you doing, talking about 10 and 15 year studies we need help NOW!
If they really wanted to know if it was vaccines they could have a vac-unvac study done in less then one year. But look at how many researchers would be out of a job at that point. So they just talk and then they just talk some more and then they talk some more...
Posted by: Jeff R. | February 04, 2009 at 04:34 PM
So, what did Peter Bell say? Was he representing Autism Speaks instead of Alison Singer?
You can't just tease us like that.
Posted by: Jack | February 04, 2009 at 04:24 PM
One of the people who commented at the end said he was an independent researcher and made reference to what his plans were as far as forming some type of Global Autism Research Center. Can someone who was listening (better than I was able to) write a synopsis of what this gentleman said. I can't remember his name. he said there were 11 or 12 vaccines that contained MSG, and that he had filed something with the FDA to rid MSG from the food supply and that in 50 some days he would file something to rid MSG from vaccines? Can someone elaborate on who this guy is and what his plans are? He said he had previously been asked by WHO for his research work concerning MSG in foods? Sorry, my listening was spotty and I couldn't take notes. Thanks.
Posted by: About the MSG comments | February 04, 2009 at 04:23 PM
The meeting has ended. Now what happens? How will the research be put back in?
Thank you to everyone who works so hard everyday for my children.
Posted by: Maureen | February 04, 2009 at 03:59 PM
PETER BELL ROCKS!!!!
Posted by: Kelli Ann Davis -- Wow!!! | February 04, 2009 at 03:38 PM
To: Was she a pharma shill?
I know!
Back to agument tactic #1 whic boild down to:
1. Vaccines good
2. Diseases scary
3. Therefore, vaccines are all good and not even possibly harmful in any way.
You don't need to be a logistician to see through a fallacious argument.
Here is a metaphor for the above argument.
1. Food is good for you.
2. But Mr. Jones got food poisoning and died from this food.
3. Conclusion: Food is all good and not even possibly harmful in any way.
In both cases, the proper investigation was not done, and the conclusions are illogical and not related to the question.
Give a THUMP to the head to anyone who uses this reasoning to "show" you that vaccines couldn't possibly cause autism.
Posted by: Look at he big bad cloudy sky for answers; not at the fact that we say no to science | February 04, 2009 at 03:33 PM
To quote Jim Carrey' "Just how stupid do they think we are???!!!"
There were a couple of members talking about how "this is a bigger issue than simply vaccines and autism. It's a about trust and authority and blah blah". Of course she had a few nodders nose-browning right up to that notion. Oooh, how very clever.....let's define the problem is so large and so great and indefinable that everyone will be lost in the clouds and ...
THEY'LL FORGET ALL ABOUT THE FACT THAT THERE IS A SIMPLE SOLUTION TO WHAT IS AN ANSWERABLE RESEARCH QUESTION. WE NEED TO DO THE STUDIES THAT WERE RECOMMENDED ORIGINALLY BY THIS COMMITTEE. WE NEED TO COMPARE VACCINATED AND NON-VACCINATED CHILDREN AND COMPARE NEUROLOGICAL DAMAGE.
They continue to wish for people to not deconstruct their "clever" ruses. (They think clever - I think easily detected distraction techniques.)
As one of the reasonable people stated (Bruce?), what is needed to restore confidence in the system and to therefore raise compliance to public health initiatives (vaccine compliance), we need to follow through on the actions. We have had the meetings. We have defined the questions that need to be answered.
Even those who believe in vaccines very strongly must have their own suspicions raised by the sneaky distraction techniques, smoke and mirrors; avoidance of actually doing the key studies that would either:
A. Exonerate the vaccines.
- or -
B. Demonstrate that we need to rework how we do vaccines.
Wherever the answers lead us, I know I and many others are MORE than willing to accept the outcome. How can anyone argue against DOING THE SCIENCE. Provided of course, that is an independent study and is in fact done scientifically in the true sense of the word, not some notion of a consensus; which is not scientific methodology.
Tell me - how do other feel about the ACTIONS being proposed? More committees? More sub-committees?
JUST DO THE RECOMMENDED STUDIES! Did I miss anything good in all my anger?
Posted by: Look at he big bad cloudy sky for answers; not at the fact that we say no to science | February 04, 2009 at 03:14 PM
Listened in late. Who was the complete idiotic woman who made the condescending remark that people have forgotten how much good vaccines have done, and how parents haven't seen some of these terrible diseases (mentioned measles) because they are young. It always slays me when these educated idiots insinuate that all parents must be in their 20s and 30s and not older AND conveniently forget that many parents did personally experience many of these "so-called deadly" diseases growing up. I think this woman talked one time right after Lyn. Don't know how Lyn can sit there like such a lady and listen to some of this crap.
Posted by: was she a pharma shill | February 04, 2009 at 03:03 PM
Bruce Gellin was just asked how he would address the lack of trust from the public... He said, in effect, I think we should ask Lyn that question because it's the CDC that people don't trust (and Bruce is sort of associated with them)! Good answer!
Previously Dr(?) Noble (I think that's who was speaking, unfortunately I missed the beginning of his talk) debunked a number of the epidemiological studies that show a continued increase; and he ended with a recommendation that a working group be formed that contained public and scientific community personnel that have no conflict of interest -- on either side. A very good presentation (I hope I can find his slides somewhere).
Posted by: ObjectiveAutismDad | February 04, 2009 at 02:29 PM
Lyn just asked Bruce Gellin if they are able to do research and/or are they going to recommend the CDC to do the research???
Bruce said the NVAC committee has the "authority" to suggest to the government to do the research.
Seems we should stick with the CAA which has specific colloquy supporting the research!
Why go through NVAC??
Posted by: Kelli Ann Davis -- Lyn Asks A Great Question | February 04, 2009 at 02:26 PM
It sounds like NVIC is trying to cut support for funding vaccine autism research from IACC at the knee's. Are they trying to reassure us they are going to take care of this and we need not worry. OR maybe I don't understand what is going on. Anyone, explain please?
Posted by: Maureen | February 04, 2009 at 01:58 PM
Call in number: 888.455.2920
Access code: 3857872
Posted by: Listen in | February 04, 2009 at 01:06 PM
Well Jeff, that will be one hell of a long restroom break!!
No getting around it. This issue is NOT going to go away. I wish the Feds would realize *that* once and for all.
Vax/unvax. Needs to be done. Period.
Posted by: Kelli Ann Davis -- 1 1/2 Hour Restroom Break | February 04, 2009 at 11:51 AM
bad news - the states are broke and can't afford autism anymore
good news - no chicken pox outbreaks.
Thanks vaccines for causing autism and bankrupting the country.
Posted by: good news/ bad news | February 04, 2009 at 11:32 AM
I bet when Lyn speaks the people who need to hear her the most like Tom Insel/Spock, (beam me up Scotty) will not be in the room, they will all suddenly need to go to the restroom.
Posted by: Jeff R. | February 04, 2009 at 10:55 AM
Kelli, thank you so very much for these updates! Much appreciated by those of us who live out in the boonies.
I just wish that some other networks were there. ABC News is S-O-O-O BIASED.
Posted by: nhokkanen | February 04, 2009 at 10:18 AM
Insel just discussed a DAN! study and "recovered" children and said it was a very important issue and they needed children to be involved in the study!
Amazing what tens of thousands of letters and hundreds of calls can do, isn't it???
Posted by: Kelli Ann Davis -- Insel Mentions DAN! Study and "Recovered" Children | February 04, 2009 at 10:17 AM
What's the purpose of the IACC requiring a person to furnish their first and last name, as well as their email address to be able to listen in to the meeting? There's no indication whatsoever on the registration site of what is done with that private info.
Posted by: Why the need for listener's private info? | February 04, 2009 at 10:15 AM
The first 15 minutes Tom Insel talked about the whole vaccine issue and the discussions on the Internet, all the letters, etc.
He just informed everyone that ABC News is filming cuz after all, it's a PUBLIC meeting.
*THIS* is what our community can do when we unify our voices!!!!!!!
Posted by: Kelli Ann Davis -- ABC NEWS IS FILMING | February 04, 2009 at 09:25 AM
Lyn has been given 30 minutes to talk about the vaccine initiatives.
The letter and phone call campaign was obviously very successful. Tom Insel is now trying to position the issue as being between "some" parents who are emotionally driven and the entire scientific community who have said the evidence is conclusive on no link. Lyn has asked several scientist to weigh in during her 30 minutes.
The idea is to demonstrate that the scientific community supports this research.
Lyn (1:00-1:30)
Bruce Gellin, NVPO (1:30-2:00)
Open discussion on vaccines (2:00-2:30)
Lyn will try to press for the oversight/evaluation of the Strategic Plan and establishing separate expert panel for the vaccine studies.
Supposedly the media is going to be at the meeting.
Posted by: Kelli Ann Davis -- PHONE CALLS/LETTERS WORKED LYN GIVEN 30 MINUTES | February 04, 2009 at 09:16 AM