The Vaccine-Autism Scare: Panic in the Wrong Place
Published February 21, 2009 @ 03:40PM PT
Just up in Newsweek: A detailed account of "how childhood vaccines became villains," starting with the 1998 press conference at which Dr. Andrew Wakefield announced that he had found a link between the MMR vaccine and autism----a link that has very much now been disproven. Kevin Leitch also posted a A Brief History of the MMR and Autism on January 28th here and I wrote about the recent vaccine court rulings, in which three federal judges ruled against three families---the Cedillos, the Hazlehursts, and the Snyders---who were seeking compensation from the National Vaccine Injury Compensation Program (NVICP). (And, you can read the decisions yourself here.)
These are the last two sentences of the Newsweek article by Sharon Begley:
It is bad enough that the vaccine-autism scare has undermined one of the greatest successes of preventive medicine and terrified many new parents. Most tragic of all, it has diverted attention and millions of dollars away from finding the true causes and treatments of a cruel disease.
"Vaccine-autism scare" is an apt way to describe what increasingly seems like a well-meaning but misdirected panic about vaccines or something in vaccines as somehow being a cause of autism. Yes, this "scare" has "diverted attention and millions of dollars away" from the real concerns here, but it should be noted that, as important as it is to find out more about "causes and treatments," at the top of everyone's agenda should be the need to provide the best and most appropriate education and services for individuals on the autism spectrum, of all ages. Autism is lifelong and we need to start thinking of it not as a "cruel disease," but as a disability that is most likely genetic, and about how we can change things to best support them.
And the fact that we've spent so much time and energy and resources on one now-refuted theory of autism: That should really give us reason to panic.
Photo by Jim Linwood.
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Comments (71)
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Whenever some new theory comes up, parents NEED to insist on double blind studies! It's not just with the vaccines. For each treatment dejour, the anecdotal stories explode all over the place. Throngs of parents, put on their blinders, jump on board and spend their energy and money, while insisting that anyone who questions the treatment doesn't know anything.
While the parents are stimming over the latest unproven treatment, their kids are growing up, needing the parents' time and acceptance and hard work to prepare for their futures.
Posted by B B on 02/21/2009 @ 06:46PM PT
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Whenever some new theory comes up, parents NEED to insist on double blind studies! It's not just with the vaccines. For each treatment dejour, the anecdotal stories explode all over the place. Throngs of parents, put on their blinders, jump on board and spend their energy and money, while insisting that anyone who questions the treatment doesn't know anything.
While the parents are stimming over the latest unproven treatment, their kids are growing up, needing the parents' time and acceptance and hard work to prepare for their futures.
Posted by B B on 02/21/2009 @ 06:46PM PT
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Some parents chose not to wait for double-blind studies that will never come. Why not compile data of the children who have recovered or substantially improved? Parents would be happy to share their lab data, treatment protocols, improvements. Why not evaluate existing data for some of these so-called 'unproven' treatments? Isn't anyone at least curious why so many parents are so insistant that these 'quack' treatments work?
There was no harm in our trying dietary changes and nutritional supplementation, our pediatrician could only warn that we'd be wasting our time and money.
He changed his tune in a few short months when he saw the improvements those simple dietary changes made in our child. He gave, and I quote, "My underhanded approval. You can't argue with results". Bless you, Dr. WH. Thank you for telling me not only that you approved of our continuation of bio-medical interventions, but also that I would never be free from opposition from the 'medical' community for doing so. Both messages were equally important.
Posted by Amom whoblamesva... on 02/21/2009 @ 07:14PM PT
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The special masters concluding that vaccines don't cause autism was about as convincing as the judge finding OJ not guilty of murder.
What these decisions have done is verify that the vaccine "court" acts politically, and that parents can not depend on HHS to compensate them if their child falls ill after a vaccination. These children all became ill and developed autism shortly after vaccination. These parents were denied access to the CDC's vaccine database and were not allowed to subpoena vaccine manufacturers for any data regarding their children's vaccinations. The vaccine court presents the federal
government as both defendant and judge - it's hard to imagine that it doesn't violate the constitution. If the CDC is so certain that there is no link between vaccines and autism, then they should do the scientific studies of vaccinated vs. unvaccinated children. Let's get real - this so-called vaccine court is
not capable of being impartial, much less determining if vaccines play a role in autism.
Posted by Amom whoblamesva... on 02/21/2009 @ 07:05PM PT
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The court used scientific evidence to make its conclusion. Scientific evidence is something people ranting that vaccines cause autism might want to look into. Stop spreading psuedoscience.
Posted by S M on 02/21/2009 @ 10:13PM PT
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Is it psuedoscience to ask for a scientific study. The parents know the answer will be found eventually. Someone will have to answer for the situation we are in. In this life or after. 4900 families have filed. So far the score is one conceded and 3 denied. Smoking has never been proven to cause cancer.
Posted by Tim Welsh on 02/22/2009 @ 05:23AM PT
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Autism still occurs, and the offending 'supposed' agent thimerosal has been out of vaccines for over a decade. If that isn't proof against the vaccine theory I don't know what is.It is statistical studies of occurrence related to other factors that can tease out the cause. To date, we havent't.I certainly hope it is NOT GENETIC, or that would be the way we are 'evolving'. I still feel it is something environmental, but we do need to find the cause.
Posted by Lee Dorsey on 02/22/2009 @ 06:55AM PT
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Lee, thimerosal has not been out of vaccines for ten years. Full doses of thimerosal are still in most flu shots, recommended for pregnant women and for babies annually beginning at age 6 months. Thimerosal is still used in the manufacturing process for some other vaccines and is then supposedly removed by a purification process that the FDA says they do not monitor and test on a continuing basis -- only initially when the vaccine is first licensed.
At the time when concerns were raised about thimerosal, vaccines with thimerosal were not recalled but remained on the shelf. Many parents report that their doctors stocked vaccines containing thimerosal years later.
In addition, this is not only about thimerosal and the MMR. Babies are receiving two dozen vaccines by the age of two and another dozen by school age, containing a number of ingredients including aluminum, live viruses, and animal proteins. Aluminum is a known neurotoxin. The safe level of aluminum for injection into infants has not been established. See Dr. Robert Sears' article at http://www.mothering.com/articles/growing_child/vaccines/aluminum-new-thimerosal.html
Aluminum is used as an "adjuvant" to provoke a greater reaction from the immune system. Studies have shown that people with autism have higher rates of inflammation of the brain, inflammatory cytokines in the spinal fluid, imbalance between various components of the immune system such as Th-1 and Th-2 cells.
Bottom line: Our vaccine schedule appears to be affecting developing immune systems in unanticipated ways. This has not been adequately studied. See http://www.cbsnews.com/stories/2008/05/12/cbsnews_investigates/main4086809.shtml
Posted by Twyla Ramos on 02/22/2009 @ 08:00AM PT
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Give me a break, people spouting psuedoscience are not asking for the truth. No matter how many scientific studies disprove this imaginary link the cult of Jenny McCarthy will march on.
I want to know why people concerned with their autistic children aren't spending their time with their children and finding real resources for them instead of wasting their time on bunk.
Posted by S M on 02/22/2009 @ 06:03PM PT
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Sage, the people who I know that are using biomedical treatments do spend a lot of time with their children. They stick with the biomedical because they see that it is helping their children.
For example, my son became toilet trained at the age of ten after we began the GFCF diet and digestive enzymes. Before that he had chronic diarrhea and enuresis. Unfortunately, no scientists or doctors recommended these treatments to us. (We had never been to a DAN! doctor then.) I found out about these treatments by reading books written by mothers.
I don't know why you want to heap scorn on people who are just trying various ways to help their children. This is not a "cult". This is parents learning from their experiences and others' experiences -- and from the few scientists and doctors who are paying attention and learning without prejudice, many of whom had their eyes opened by the having children with autism themselves.
Many parents saw their children harmed by vaccines. That is a fact. Many are seeing their kids getting better with biomedical treatments. This is also fact. Just because they haven't had their stories published in peer reviewed journals, that does not mean that it isn't happening.
Posted by Twyla Ramos on 02/22/2009 @ 08:48PM PT
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There would be a very simple measure the CDC could impliment to absolutely determine if there was a link, change the age recommended for vaccination schedules while simultaneously tracking the precise age for the population in which autism first presents itself. If they change the vaccination schedule by delaying 1 year the normal course of vaccines and find that the median age of the onset of autism in new patients changes, then they have incontrovertible proof. Most of these early childhood diseases are also extremely rare in the United States and delaying the age of vaccination by one year would have very few if any consequenses.
Posted by Doug Vibbert on 02/21/2009 @ 08:48PM PT
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Measles, though, have recently been at their highest rates in the US and in the UK.
http://www.autismvox.com/measles-arent-going-away-theyre-on-the-rise/
http://www.autismvox.com/measles-cases-and-fear-of-autism-on-the-rise/
Some 11 children in the San Diego area (one, a baby) contracted measles in 2008.
http://www.autismvox.com/11-cases/
Posted by Kristina Chew on 02/21/2009 @ 09:05PM PT
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They're extremely rare because of vaccines.
Posted by Emily Willingham on 02/21/2009 @ 09:30PM PT
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That wouldn't make much sense- it wouldn't be a controlled study. Environmental and diagnostic changes could happen that would affect the entire population thus skewing the results. You certainly could do a controlled, double blind study of a few thousand kids where you vaccinated half of the children on schedule and the other half on a delayed schedule.
However, then you are using a weak theory to change a group of childrens vaccinations schedules. The vaccines cause autism theory has virtually no reliable empiracle evidence backing it up whereas the vaccines prevent illness theory has been proven. It's potentially dangerous medicine and most likely a waste of time.
Posted by Erin Monk on 02/21/2009 @ 09:32PM PT
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Christina that was a logical sugestion. You are the one that operates on fear mongering. Todays modern medicine has improved our ability to handle disease. Everyone knows that herd immunity theory is psuedoscience. Clean water and sanitation went the distance in saving lives. Someone should focus on just providing clean water around the world instead of billions to lobby for adding another vaccine to our schedule and export mercury laced vaccines.
Posted by Tim Welsh on 02/22/2009 @ 05:29AM PT
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If herd immunity doesn't work, then how on earth to you explain smallpox?
Posted by Erin Monk on 02/25/2009 @ 07:14PM PT
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And I for one would not be willing to delay pertussis given its continuing spread in the community and the deadly threat it holds for infants.
Posted by Emily Willingham on 02/21/2009 @ 09:31PM PT
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"Panic" is not the word that I would use to describe the sentiments of parents I know. "Concern" would be more like it. "Regret" and "anger" are big emotions, too, when parents look back at their baby's escalating vaccine reactions and wonder why they didn't question the need for and safety of so many vaccines in such a short time period at such a young age.
I don't know why these judges made the decisions they made, but I can say for sure that the vaccine-autism link has not been refuted, and that this issue is not going away.
Dr. Wakefield did not cause the vaccine scare; he responded to concerns raised by the parents of his patients.
As more and more children suffer vaccine reactions, some resulting in autism, it will become increasingly difficult for our governmental agencies and medical organizations to continue to deny the obvious.
See:
http://www.nationalautismassociation.org/press021209.php
http://www.safeminds.org/pressroom/documents/SafeMindsOmnibusStatement_full.pdf
http://www.safeminds.org/pressroom/press_releases.html
Posted by Twyla Ramos on 02/21/2009 @ 10:23PM PT
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P.S. It is not true that the search for vaccine-related autism causes has "diverted attention and millions of dollars away from finding the true causes and treatments". For years most of the research dollars and attention have gone towards anything but vaccine safety issues. Millions of dollars have been spent on studying genes and the brain.
See http://www.cbsnews.com/stories/2008/05/12/cbsnews_investigates/main4086809.shtml
Most people I know who are into biomedical are also into advocating for and working towards the "best and most appropriate education and services for individuals on the autism spectrum, of all ages".
A study at UC Davis recently confirmed that the rate of autism has increased dramatically during the past 20 years. This increase can not possibly be purely genetic.
Posted by Twyla Ramos on 02/21/2009 @ 10:48PM PT
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Yes, the rate of autism has increased greatly in the past several years.
http://autism.change.org/blog/view/new_study_on_californias_rise_in_autism
/>
Posted by Kristina Chew on 02/22/2009 @ 07:59PM PT
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Hello friends -
The people who are really in a state of panic are the regulatory agencies who see month in and month out another set of research that tells us the immune system of children with autism is profoundly different than children without that diagnosis; different in ways that are completely invisible to our current set of vaccine / autism research.
Unfortunately, for them, shouting about Wakefield, or special court rulings is not going to do anything to reverse this trend; and as evidence of immune dysregulation continues to accumulate, more and more people are going to wonder how evaluating thimerosal or the MMR provides us any information about the impact of stimulating immune responses at earlier and earlier ages.
There is a limited time horizon that this question will be avoidable through New York Times editorials and spoon fed Newsweek articles. The more time that goes by before it is addressed, the larger the eventual impact on the credibility of the people who were telling us again and again that our understanding of vaccination and autism is comprehensive.
- pD
Posted by passionless Drone on 02/22/2009 @ 05:52AM PT
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Vaccine studies related to autism (not "vaccine safety issues"), many based on assertions and interpretations of that false paper from 1998, have indeed diverted millions in resources from other avenues of investigation, including far more viable environmental avenues. The Davis paper was widely misrepresented in the popular press, but that's been discussed before (and it's something the popular press/media do with most stories from the headlines on down--screaming hysteria, playing on fear. Makes money, ya know?).
And it's not just the millions that have been diverted globally--it's also the emotion, the energy, the time. These all could have been put to better, more practical, more scientific purposes, focused on more relevant hypotheses, whether environmental or genetic or both--which is likely the reality. Wakefield built himself a cult, quite successfully, using the standard tactics of any such narcissist in doing so. He poured the Kool-Aid, and millions drank it. His offering in Lancet barely had anything to latch onto in the way of data or a hypothesis, but the emotion and hysteria that built up around it--like catnip to him, no doubt--drew attention away from quieter, more rational, more educated hypotheses. But...it worked for him because it made him money, ya know? In fact, millions in US$. Right now, at Thoughtful House, his current earnings are enormous, based on published reports. Selfless fellow.
I've said it before, but I'll say it again: Everything that began with that Lancet paper and everything that has or has not happened with that hypothesis in the ensuing decade plus points coldly, clearly to Wakefield et al.'s ideas as a classic example of pseudoscience. Absolutely classic. And the most telling aspect is the fact that since 1998, they've failed to produce an iota of data to support that whackadoodle put-up job of a paper, and anyone else trying to replicate their results--a basic necessity in science--has been unable to do so. Junk science at its "best," that.
I can't tell if the reference to studying "genes and the brain" is snide, but that is the fundamental place to look for the physiological correlates of autism, regardless of what your emotions or your rational mind tell you is involved in its etiology.
Immune dysregulation? "Stimulating immune responses at earlier and earlier ages?" Those response are stimulated by millions of things; vaccines form a very small part of that. Without them, thousands of children would find their immune systems stimulated literally to death.
Posted by Emily Willingham on 02/22/2009 @ 06:26AM PT
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But thimerosal has been removed from most vaccines given to children (though not the flu vaccine) in the past couple of years.
If we understand that autism is primarily genetic, and gradually withdraw the hyper-focus on vaccines and the environment as causes, we can start to think about the long-term issues of education, of creating really good school programs and job training programs, and of helping society to understand the need to support individuals with disabilities throughout their whole lives, and also their families who struggle to take care of those who need it.
Posted by Kristina Chew on 02/22/2009 @ 08:29AM PT
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Actually there are still trace amounts of thimerosal in some vaccines due to what they call post-production thimerosal removal. Oddly enough, they don't share this information with parents headed to the doctor to vaccinate their children. It's very similar to the labeling of "0 grams of transfat per serving" on food productst which actually means...there is a low dose of transfat in the food, but we're not going to tell you about it. It would be so nice to have a system of honesty in our society where we could read an ingredients label and believe it means what it says.
Posted by P R on 02/22/2009 @ 09:03AM PT
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Calomel? Why weren't there raging levels of autism back in the days of calomel? Just curious.
Posted by Emily Willingham on 02/22/2009 @ 09:32AM PT
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I, for one, am not interested in having my hair and teeth fall out due to an overdose of calomel. I, especially, am not interested in injecting a dose of thimerosal into a very small baby to see what might happen. Calomel and thimerosal are not even the same chemical compound. This debate will go on as long as the money is there to protect the pharma industry. We could go back and forth all day long, but simply stated, I'm not interested in waiting another fifty years for science to prove that vaccines cause autism while children continue to be injured and families attempt to find services to support their autistic children.
Posted by P R on 02/22/2009 @ 09:50AM PT
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re "If we understand that autism is primarily genetic, and gradually withdraw the hyper-focus on vaccines and the environment as causes, we can start to think about the long-term issues..."
Kristina, it's not an either/or. We can focus on both biomedical causes/treatments and on education, therapies, living situations. You spend a lot of space knocking biomedical, yet you still find time/space to talk about other stuff. Parents I know who do biomedical also focus on services such as therapy, education, recreation, planning for the future etc.
Posted by Twyla Ramos on 02/22/2009 @ 04:22PM PT
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Yes, calomel is far more toxic. Yet...here we all are.
Posted by Emily Willingham on 02/22/2009 @ 04:53PM PT
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And don't tell poor Walt Whitman how bad it was for him.
Posted by Emily Willingham on 02/22/2009 @ 05:00PM PT
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@Twyla, you wrote: "Parents I know who do biomedical also focus on services such as therapy, education, recreation, planning for the future etc."
Yes, the parents I know who do biomedical focus on those things too.
Posted by Kristina Chew on 02/22/2009 @ 07:53PM PT
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As far as I'm concerned this article/link below says it all. I will never, for one second, believe that there is not a connection between autism and vaccines. The more I read about vaccines, the more shocked I am by the completely bogus vaccine studies that are touted as proof that vaccines are safe. If you're planning on find this sort of information in Newsweek you can forget it.
http://www.huffingtonpost.com/jay-gordon/there-is-no-proof-that-ci_b_167157.html
Posted by P R on 02/22/2009 @ 08:37AM PT
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Jay Gordon is a well-known DAN! doctor, but the science behind his claims and statements is best treated with further research.
Posted by Kristina Chew on 02/22/2009 @ 08:53AM PT
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I would say that the vaccine court's decisions need to be best treated with further research. Another great article from Jay Gordon..
http://www.huffingtonpost.com/jay-gordon/the-vaccine-court-was-wro_b_167374.html
Posted by P R on 02/22/2009 @ 09:21AM PT
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"I will never, for one second, believe that there is not a connection between autism and vaccines."
Because it is, after all, totally a matter of belief.
http://www.theonion.com/content/amvo/study_counters_autism_vaccination
HuffPo has very little weight in this discussion.
Posted by Emily Willingham on 02/22/2009 @ 09:28AM PT
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I'm not sure what the "weight" of HuffPo has to do with Jay Gordon. I'm quite certain Jay Gordon can stand on his own. Feel free to check out his website. Regarding your link to the onion, I won't even comment.
Posted by P R on 02/22/2009 @ 09:35AM PT
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That's 'cause it's funny.
Posted by Emily Willingham on 02/22/2009 @ 11:44AM PT
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I love the onion :-D
Posted by Erin Monk on 02/22/2009 @ 01:16PM PT
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Me, too. I could start a whole digression on this week's Onion alone. But I'll just leave with, "Victims of Cube Scheme Break Even." I laughed so hard I almost cried.
http://www.theonion.com/content/index/4451
Posted by Emily Willingham on 02/22/2009 @ 01:28PM PT
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My favorite is "Bush Regales Dinner Guests With Impromptu Oratory On Virgil's Minor Works."
http://www.theonion.com/content/node/31077
/>
Posted by Kristina Chew on 02/22/2009 @ 08:00PM PT
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That's because it namechecks the Georgics. ;-)
Posted by Emily Willingham on 02/22/2009 @ 09:00PM PT
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A most George-ic-ey poem is there ever was one........
Posted by Kristina Chew on 02/22/2009 @ 10:07PM PT
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@ Diana; I don't how old you are? Do you know why that CDC will not give up there database or can not be suponea be they and the giverment all ready know what caues autism!!
How much reading have done on the use of fluoride in the 1930s in nazi germany for control of a population [Jewish ] when it was brought to the states in the 1940s and interduced into the water sytems by the cdc,so the could run there own experiments. Ther was not to much happing for the first 46 years a only as ther were only around 40 to 50 cities by 1990 were useing fluoride oall over the country so the number of persons spread out over the us was small. Then in 1985 or 86 the U.S. congress passed a law that was to take all the lead out of ever thing like paint,gas and the lead based solder that they put water pipes to gether so the chlorine would leech the lead out and people would not drink leaded water.
Someone foregot to tellthe CDC to take the fluorid {lead and arsenic] out of the water.So whe the water plants got the water the stell put the fluoride in the water and when the lead and chlorine combine it produces lead chlouride the same the in the use insecticids. So that is what yuo drink ever day if your water is fluoridated!
Then in 1993 the white house said that we should give more of the population more of that free dental care we will increase the 50 cities to more then 4200 that way we can get around 70%of the puplation and the experimants went on.
By the time all the plants were on line in 1998 the epidemic was well on its way. That is when it went from 1in 2500 to 1 in 150 so you can see why the CDC doe"s not went to talk.
If it was up to me the whole lot would be in jail for crimes aginst humainty for all the pain and grief [genocide.] that they have caused.
Posted by Donald Savitz on 02/22/2009 @ 09:05AM PT
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I was told a lady never reveals her age... I plan to lie profusely about my age someday, so I don't say now. :)
Yes, I am in agreement that flouridated water is a bad thing. Despite topical application of flouride reducing cavities, there was never any evidence that ingesting it was beneficial.
I'm not sure I believe there was a conspiracy involved other than the standard American capitalist conspiracy... someone needed to dispose of a lot of flouride waste generated by the production of fertilizer, and how convenient to SELL it to municipalities to add it to the water.
Eliminating flouridated water from my son's diet was among the biomedical interventions we undertook to heal him, yes.
Posted by Amom whoblamesva... on 02/22/2009 @ 04:31PM PT
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You can tell how old I am from this post.
http://www.autismvox.com/older-and-trying-to-be-wiser-and-better-at-hemming-pants/
/>
Posted by Kristina Chew on 02/22/2009 @ 07:48PM PT
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Hi Emily -
Do you really not believe we have evidence of immune dysregulation in autism? If so, your position mandates that dozens of studies have been wrong in exactly the same way; ironically, this is likely what you feel folks who ramble on about the MMR.
Just during the past year, the following papers have been published concerning different immune responses in autism.
Elevated immune response in the brain of autistic patients [Li / 2009] Additional evidence of an ongoing inflammatory response in the brains of children with autism.
Increased IgG4 levels in children with autism disorder. [Enstrom / 2008] Increased IgG levels are identified in autism, but not in normal or children with developmental delays other than autism.
Impact of innate immunity in a subset of children with autism spectrum disorders: a case control study [Jyonouchi / 2008] Different cytokine generation profiles in response to several types of stimulation are identified in autism versus normal controls, and among subsets of autism.
Serum levels of P-selectin in men with high-functioning autism. [Iwata / 2008]. Decreased levels of a chemical with a role in inflammatory response are found in autism when compared to controls. As levels decrease, autism severity is found to increase.
Decreased transforming growth factor beta1 in autism: a potential link between immune dysregulation and impairment in clinical behavioral outcomes [Ashwood / 2008]. More correlation between an factor involved with control of immune responses and autism severity.
Altered gene expression and function of peripheral blood natural killer cells in children with autism [Enstrom / 2009]. Natural killer cells are found to be less numerous, and exhibit less cytotoxic capacities in children with autism.
I left a few out. Why go further back to 2007 and beyond to prove the point? This post is getting long enough as it is.
In any case, it is exactly the type of response regarding 'millions of things' stimulating our immune systems that has me in a panic; primarily because it utilizes a grain of truth to promote a completely false analogy, and it is being done as a means to suggest we have no reason to evaluate a program that is a cornerstone of national health policy.
Yes, our children, and everyone for that matter, is continuously exposed to things that initiate some level of immune response. At a percentage level, vaccines comprise a very small amount of the total number of immune responses generated.
But addition is a woefully inadequate mechanism to measure something as complicated as our immune system. Why should we ignore the magnitude of the immune response generated, or the fact that the mechanism of action of vaccines is different than the millions of things our bodies have handled since our immune systems began development, millions of years ago?
Many vaccines currently given to children generate an immune response to the extent that the child develops a fever within a few days; as many of thirty percent of children show an increased temperature for many of the new combination shots designed to reduce the number of pinpricks. If we able to meaningfully equate everyday exposure to bacteria and resultant immune responses and those with Pediarix, shouldn't our children have an increased temperature 30% of the days? If our children do not run fevers two days a week, doesn't this mean we cannot draw valid conclusions between 'normal' exposure to the world and exposure that comes in a vial?
To make the point even clearer, it turns out, getting a combination shot like Pediarix increases your chances of developing a fever when compared to getting shots for the individual diseases which Pediatrix combines. That is, there is a difference in immune response between vaccines for the same diseases; why on Earth should we assume that there is no difference in response between vaccination and everyday exposure? Why?
Sure, kids get fevers without vaccines; some even get them early on; but we have undertaken a course to insure that nearly a third of our children are getting them by the time they are two months from the womb; and again sixty days later. We now know, we absolutely know, that children with autism are predisposed to reacting to immune challenges, and controlling immune responses in fundamentally different ways than their non diagnosed peers. The reasons that we are told that vaccines should be not be evaluated are composed of statements that mandate a hugely simplistic view of the very complicated developing immune system, and fail the most primitive of logical tests. That is what has me in a panic.
- pD
Posted by passionless Drone on 02/22/2009 @ 09:17AM PT
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I don't care if getting shots "increases your chances of developing a fever." So what? That's a nonspecific response of the immune system to challenge. There is nothing inherently wrong with fever, at all. And your analogy to the other challenges isn't accurate, either. The point is actually not very clear. And I don't make the assumptions you're claiming on my behalf.
Posted by Emily Willingham on 02/22/2009 @ 09:31AM PT
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Hi Emily -
Are you still unconvinced of a problems with immune system regulation in the autism population? There are many more studies with similar findings.
"I don't care if getting shots "increases your chances of developing a fever." So what?"
Because it invalidates the critical component of the 'millions of other things generate an immune response' argument; that we can meaningfully equate millions of other things and vaccinations. Those millions of other things don't seem to be generating nonspecific responses with nearly the frequency as vaccines. Given that reality, why should we group the two together as if they are equal? It is obvious that they are not. Once we accept this, arguments involving equivalence between everyday exposure and vaccines and their consequent immune responses fall apart. Without that argument, your original post is without content; except your apparent surprize that someone would suggest the immune system dysregulation in autism.
"There is nothing inherently wrong with fever, at all."
The developing immune system is a fickle thing that we are still spending a lot of resources to understand. As a population, perhaps your statement leans towards accuracy, but you are making a claim that is wildly speculative for a group of individuals for whom we know have problems regulating inflammatory immune responses.
Finally, a fever is only our most outwardly visible manifestation of the immune response; even though children with autism are experiencing persistent inflammation and immune activation in their CNS, they aren't running a fever all the time.
I was simply using the fever metaphor to illustrate the fallacy of equating everyday immune responses and those following vaccination. If we look to studies measuring cytokines pre and post vaccination we find the same patterns; a detectable increase after vaccination. If the 'millions of other things' were causing the same kinds of responses; we shouldn't be able to detect a difference pre and post vaccination, it should be lost in the noise if this response was just one in a chorus of millions. Yet this is not the case. Additional evidence that we cannot have certainty in any conclusions founded on an equivalence between vaccine generated immune responses and everyday exposure to bacteria, toxins, whatever.
At this point, it becomes a bit more problematic to argue, 'So what?', because it is exactly these same cytokines that have been observed time and again to be abnormally distributed in the autism population.
"And your analogy to the other challenges isn't accurate, either."
I'd be happy to try to clear that up, or retract; but I'd need more detail as to where you feel I've gone off track. (?)
"And I don't make the assumptions you're claiming on my behalf."
Hm. Well, I'd hate to assign to you a position you do not take, as it seems to happen to me with some frequency. Can you tell me what assumptions, precisely, I've assigned to you that were inaccurate? I'm working on tightening up my analysis of other folks postings, so as to reduce this type of thing.
- pD
Posted by passionless Drone on 02/22/2009 @ 12:24PM PT
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Many challenges to our "immune" systems don't necessarily elicit fever, including several viruses we blame for the "common cold." Fever is nonspecific and not technically "immunity," but people casually refer to it that way. Anyway, lack of fever doesn't mean we're not being challenged. And regarding the cytokines--of which there are about a billion zillion--there's nothing I see that solves the chicken-egg issue there. Cytokine biology is so enormously complicated--and grounded in one's genetics, I might add--that we're just sticking toes in the water there. TGF-beta alone can barely be excluded from any developmental process in human biology.
Disregarding any of this, I fail to see how dying from pertussis or measles-related pneumonia is somehow preferable.
Further on the cytokine argument: If there are extrinsic triggers (triggering adaptive rather than innate immunity), and vaccines might be one, eliminating or including vaccines or anything else should be fairly straighforward--just divide and assess the populations.
Two things are interesting to me about the brain/immunity thing. (1) It seems largely cerebellar, which doesn't really explain right-hemisphere deficits, and (2) it would explain a whole lot about my own family's genetic history in re: autoimmunity and brain inflammation, even in family members who NEVER RECEIVED VACCINES. But then...that would be genetic, I guess, so better not bring it up here. ;-) What confuses me is the nonprogressive course it seems to follow, which doesn't completely jibe in my mind with an autoimmune disorder.
Finally...TH is, by far, our child least susceptible to infx and fever. Always has been. Dunno if that's dysregulation or not.
Posted by Emily Willingham on 02/22/2009 @ 01:54PM PT
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If the anecdote-unproven-treatment parents also spent put time into improving the quality of lives for their kids on other levels, show me sites where parents bond over creating good foster homes or autism friendly businesses or autism friendly higher education or day programs where they aren't over crowded and unaffordable.
The kids grow up, the agencies take over and the parents stop hanging out together relating the stories about the amazing cures that will fix everything.
Posted by B B on 02/22/2009 @ 09:48AM PT
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Maybe we're not bonding over those yet but we clearly need to start.
Posted by Kristina Chew on 02/22/2009 @ 10:06AM PT
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My husband and I are spending the rest of our lives trying to make things right for people like my autistic adult children and the whole community around them. It's not easy to find interest in anything autistic once the kids grow up.
Posted by B B on 02/22/2009 @ 10:10AM PT
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Becky, where do you live? I would suggest looking at yahoo groups for suport groups in your area. I have found regional support groups, yet some areas' groups are much more active than others. Some groups have parents of older children, but most of the children are younger, obviously. There are national support groups on yahoo groups, some of which are very, very active. Some may be focused on areas that may not interest you, such as chelation therapy or various diets, like GFCF (GFCFrecipes is a very active group) - Despite being focused on various topics, none would chastize you for making an off-topic post trying to connect with other families having the interests and needs you have. I have found online support groups invaluable, the parents are often very, very knowledgable (MDs, college professors, autism experts by necessity, etc.). Many keep the same crazy hours I did so often times I could get real-time answers to my questions.
Hope that helps.
Posted by Amom whoblamesva... on 02/22/2009 @ 04:24PM PT
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Have you noted groups for parents of adult children? Somehow I have noted that the fervor seems to change as children get older----not that parents feel less of a need to connect or less devoted to their children, but the world seems to pay less attention when kids are no longer "cute" and little, and the concerns are not as simple as a diet or treatment, but the need to work out policy at the state and national level about housing, job training, job coaches, recreation for adults with disabilities, transportation, training for staff.
I've had some important conversations with an 80+ year old mother who is the primary caretaker for her 50+ year old autistic son; she is mostly free at times like 2am in the morning, after he is asleep.
Posted by Kristina Chew on 02/22/2009 @ 07:28PM PT
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It's not hard to find groups who continually bond over diets but I have other problems to solve. We are working on getting grants for projects to create community in our real world, our real world where care givers, family members, friends, cool people all intermingle and enhance each other's strengths and are safety nets when one needs one, where we use what resources we share to help each other. Besides grants we're trying to develop businesses for people like us.
It's a slow process but all I care about is pulling it all together before I die. I don't want my daughter to be sent to the dog pound after can't take care of her and I don't want my son to crash and burn when he no longer has his parents there to keep him safe.
Posted by B B on 02/22/2009 @ 08:27PM PT
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@Kristina - I haven't looked for groups of adult children. I do know some parents of adult children post on at least one of my regional groups.
@Becky - I realized there might not be a group specific to what you are looking for, but my suggestion was to mine existing groups for parents who share your goals. Even if the parents on the national groups are not active in the pursuits you suggest - chances are they have an idea who in their areas are working on those issues.
Someone should start a yahoo group to begin the networking you seek. You can make the rules of your group whatever you choose. Start a group, and post invitations to join the group on the other autism related sites. Just because other groups focus on diets or chelation or bio-med doesn't mean the parents are not interested in future planning for adult autistic children or at least know who in their area is working on those issues.
Posted by Amom whoblamesva... on 02/22/2009 @ 08:48PM PT
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I think that as this generation of kids gets older there will be more attention focussed on adults -- parents will demand it. And some parents are already working on building supported communities for adults with autism. (I know some adults with autism can live independently, but some cannot.)
Although some people say there has been no increase in autism, I do not believe this. I don't know how society will deal with 1 in 150 adults with autism when we their parents have passed away -- or even before then.
Posted by Twyla Ramos on 02/22/2009 @ 08:55PM PT
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Society is already "dealing" with adults with autism. And there's that "belief" again. Some things are not a matter of belief.
Posted by Emily Willingham on 02/22/2009 @ 09:02PM PT
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My daughter is part of the first generation who grew up when most of the institutions were closed down. We parents are the pioneers who can let the inexperienced new world foster home order run away with our children or work together to build what they all need.
I am networking but it's a slow process. We have a message board. It's currently offline but it will be back up in a day or two.
Posted by B B on 02/22/2009 @ 09:17PM PT
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I also have a temperament that is prone to serious anxious moments and phobias so it's not exactly easy to keep everything moving forward but we are moving forward. We have no choice.
Posted by B B on 02/22/2009 @ 09:40PM PT
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Twyla, it is ok for Emily to 'believe' infectious disease rates are low due to vaccines (that cannot be proven Emily, you should know that), but it is not ok for you to 'believe' that one out of 150 adults are not autistic.
So, merely state that you KNOW one out of 150 adults are not autistic. Problem solved. Where are all these autistic adults? Sure, there are some, but no way are there 1 out of 150... no way.
Posted by Amom whoblamesva... on 02/23/2009 @ 11:12AM PT
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You're not serious, are you?
http://www.asm.org/Media/index.asp?bid=57289
/>
http://www.doh.wa.gov/hws/doc/ID/ID-EID2007.pdf
/>
http://www.cdc.gov/mmwr/preview/mmwrhtml/00056803.htm
/>
http://pediatrics.aappublications.org/cgi/content/abstract/122/5/911
/>
http://www.expert-reviews.com/doi/abs/10.1586/14760584.8.2.159?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%3dncbi.nlm.nih.gov
/>I could just go on and on and on with hundreds of studies re: this link. I went for a variety in case you think the government is trying to kill you.
Strangely enough, where these vaccines aren't used, rates of these diseases are quite high.
http://www.ncbi.nlm.nih.gov/pubmed/18711998?ordinalpos=50&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
Posted by Emily Willingham on 02/23/2009 @ 11:39AM PT
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They blame disease in the third world on Hygenie. It turns into a cyclical argument (I'm a member of a community that happens to have a lot of "crunchy" people who, when they have kids, don't vaccinate).
It is impossible to win the argument... it really is. They genuinely believe vaccines don't work. I find it terrifying for public health, because it's an ideology that is spreading instead of dampering. If they are wrong, which I believe very strongly they are, and they get their "message" to enough people we are going to have outbreaks of disease.
Posted by Erin Monk on 02/23/2009 @ 08:53PM PT
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Cyclamates, MTBE's, and Global Warming. When are we going to learn to wait until we know for sure before we start passing laws? I'm glad this came out before some silly laws were passed about this too.
Posted by Chris Deckrow on 02/22/2009 @ 10:18AM PT
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Hi Emily -
(Why won't this package allow us to thread more than one deep?)
"And regarding the cytokines--of which there are about a billion zillion--there's nothing I see that solves the chicken-egg issue there. Cytokine biology is so enormously complicated--and grounded in one's genetics, I might add--that we're just sticking toes in the water there. TGF-beta alone can barely be excluded from any developmental process in human biology. "
Please don't take offense, I mean absolutely none, but I take no comfort in the fact that you, or for that matter, anyone, cannot see a solution to the chicken-egg issue; precisely for the reasons that you indicate, it is an area still being actively researched due to its complexity, and our reactions differ widely among individuals due to genetics. Given that, what makes you think that vaccines can't be affecting this area, especially considering the relative dearth of research? But some of what we do have seems to conform to the notion that we have undertaken a massive expirement on our children, and we only understand one half of the results.
By way of example, in "Modulation of the infant immune responses by the first pertussis vaccine administrations" [Mascart/2007] researchers found that when comparing cytokine levels in children who got DTAP vs DTP, a significant increase in TH2 cytokines was observed; persistent for at least four months. So we have an enormously complicated system that has evolved over tens of millions of years, and by introducing a new vaccine, we have skewed ratios. Were the changes persistent more than four months? What about children who had particular genetic predispositions, like those with autism? Children, who by the way, have been found to have a TH2 skew in cytokine levels [Molloy 2006]. It would seem that the notion of vaccines creating a more than transitory change in cytokine levels is not speculative; but the effects of this, if any, are unknown.
Your statement concerning the ubiquity of TGF-beta is well taken. It turns out, analysis of what happens to these circulating levels of TGF-Beta when vaccinated by pediatric vaccines is completely absent from our knowledge set. An experimental cancer vaccine, however, has been analyzed in this regard, and was shown to cause a significant decrease in TGF-beta and t regulatory cells. See "Levels of circulating regulatory CD4+CD25+ T cells are decreased in breast cancer patients after vaccination with a HER2/neu peptide (E75) and GM-CSF vaccine. " [Hueman / 2006]. Out of three hits on pubmed where you search for 'vaccines TGF-beta', one of them finds drastic reductions in a substance which 'can barely be excluded from any developmental process in human biology'. Good stuff.
How can we have certainty that some of our other childhood vaccines are not having similar effects? One wonders what might happen if a person with genetic predisposition to having low TGF-Beta to start one had a similar reaction at two months of age? One thing is certain, we don't have a damn clue; our existing research just doesn't address it.
"Disregarding any of this, I fail to see how dying from pertussis or measles-related pneumonia is somehow preferable."
False dichotomy. And in any case, this does nothing to dispell my worries that our understanding of the impacts of increasing vaccination and chronic ailments involving immune system problems are nascent, at best.
"Further on the cytokine argument: If there are extrinsic triggers (triggering adaptive rather than innate immunity), and vaccines might be one, eliminating or including vaccines or anything else should be fairly straighforward--just divide and assess the populations. "
Well, I think this is what I've been arguing needs to be done.
"Two things are interesting to me about the brain/immunity thing. (1) It seems largely cerebellar, which doesn't really explain right-hemisphere deficits, and (2) it would explain a whole lot about my own family's genetic history in re: autoimmunity and brain inflammation, even in family members who NEVER RECEIVED VACCINES. But then...that would be genetic, I guess, so better not bring it up here. ;-) What confuses me is the nonprogressive course it seems to follow, which doesn't completely jibe in my mind with an autoimmune disorder."
Of all people, I believe that you understand the peril of extrapolating personal experiences to a condition with the heterogenity of autism. I have no problem with the genetic, and I don' think I have ever implied that it isn't critical; but you've said it plenty of times, genes don't operate in a vacuum.
- pD
Posted by passionless Drone on 02/23/2009 @ 11:46AM PT
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Autism is a "relationship"(emotions)problem.
With my nefew who is "light" autistic now(he is 14),we've been very close and I helped him a lot.
Posted by joelle rooselaer on 02/24/2009 @ 06:09AM PT
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Let's show some commons sense here. The world is not all black or all white.
Not every case of Autism is due to mercury from vaccines, and it appears that many cases are related to mercury in vaccines. There is a lot of research that I have read that supports the connection to mercury. There are a lot of good research recommendations for people that are interested.
The body is designed to handle various toxins from our environment. When we overload our body, it becomes more susceptible to toxic overloading. The weakest part of the body, at the time of that overload, will be the one that suffers the greatest consequence of that overload.
Mercury is not the only toxin overloading our body, and vaccines are not the only source of mercury. Other medications, pesticides, lead and other toxins are everywhere. In addition, CFL’s (those “environmentally friendly” light bulbs) use mercury too. It is suggested that it is the sum of all of these toxic overloads that affects our overall wellness.
There is valid research that shows damage to the nervous system from mercury appears to be identical to damage caused by mercury. However, they just don’t know yet if it is the only substance that can cause this relationship. In my research I have discovered reasons why some people might be more susceptible than others, and ways to safely detox the body.
So, let’s be realistic. Mercury appears to be a major player in Autism, yet it isn’t the only factor leading to Autism. That makes it difficult to identify as the cause, or even as a possible cause.
I support wellness, not illness. Common sense would dictate that keeping ourselves well is the greatest insurance against illness. Our body probably does not need vaccines for many illnesses, and probably a discussion leading to the support of wellness would be more constructive for health issues.
Posted by Ralph Benedict on 02/26/2009 @ 08:43AM PT
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I think there's more and more evidence to point out that mercury is not a "major player" in autism----
Posted by Kristina Chew on 02/26/2009 @ 11:48AM PT
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Oops, in one paragraph I mention damage caused by mercury. It should read:
Neural damage found in Autism appears to be identical to damage caused by mercury to the nervous system.
Posted by Ralph Benedict on 02/26/2009 @ 08:50AM PT
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Ralph
There are NO neural damage in Autism.
My nefew is more intelligent that some psy.
Posted by roose rooselaer on 02/27/2009 @ 05:07AM PT
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Ralph
There are NO neural damage(found) in Autism.
My nefew is more intelligent than some Psy.
He turned to be autistic because of his "life".
If you wanted to hear about it.....?
Posted by joelle rooselaer on 02/27/2009 @ 06:03AM PT
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Hi Kristina -
Speaking of panic, I found a pretty startling paper this weekend. It turns out, researchers were able to permenantly increase the succeptibility to seizures in rats by the initiation of a single mild inflammatory response during critical developmental timeframes in an animal model.
Postnatal Inflammation Increases Seizure Susceptibility in Adult Rats
From the discussions section
The most exciting finding of the present study is that a mild inflammatory response evoked by LPS during a critical period of development causes a long-lasting increase in hippocampal excitability in vitro, and enhanced seizure susceptibility to the convulsants LI-PILO, KA, and PTZ in vivo. The latter effect was observed over a range of mildly inflammatory doses of LPS and was only evident if administered during the second postnatal week (P7 and P14), and not before (P1) or after (P20) this time. Importantly, inactivation of the proinflammatory cytokine TNF with an intracerebroventricular TNF antibody blocked the long-term changes to seizure susceptibility induced by LPS, whereas intracerebroventricular administration of rrTNF alone mimicked the effect of LPS on seizure susceptibility. These novel results indicate that a single transient inflammatory episode during development can modify the brain through a TNF-dependant mechanism, making it more susceptible to generate seizures in adulthood.
Amazingly horrifying stuff! Getting a single immune response during critical timeframes can cause sustained neurological outcomes into adulthood. It need not necessarily be a distinctly powerful response either. The researchers were able to get identical results by injecting inflammatory cytokines directly, and were able to block results by concurrently providing antibodies to the same cytokine. Despite the fact that all of the animals were exposed to everyday bacteria and viruses; all of which generated immune challenges to one extent or another, only those animals that got injections of bacteria cell proteins were adversely affected. At this point, can we not say with some certainty that there are some fundamental difference between everyday bacteria exposure and exposure that comes from a needle?
We also know that this doesn't have anything to do with the bacteria itself; the rats didn't get sick, they just got the protein walls of bacteria injected; essentially analogous to the bacterial proteins used during immunization to generate a memory of the bad bugs. If such a relationship existed between vaccination in humans and altered neurological outcomes, our existing suite of thimerosal research into the subject would be completely blind to this; as we have never bothered to measure the effects of the immune response, only the presence or absence of thimerosal. Likewise, MMR studies analyze only a snippet of our vaccine schedule, and indeed, one that exists at a relatively late timeframe of development compared to things like Hep B, DTAP, and Hib. You only learn about what you study, and the impact of stimulating an immune response at early ages simply hasn't been studied all that well.
It is also of particular interest that tnf-alpha is a critical component towards seizure generation, considering that we have several studies showing increased levels of tnf-alpha in the cns of those with autism, at least two studies showing that children with autism have been observed to generate increased amounts of tnf-alpha in response to stimulation by a vareity of proteins. Anyone interested could take a look at Elevated immune response in the brain of autistic patients, Elevation of tumor necrosis factor-alpha in cerebrospinal fluid of autistic children, Innate immunity associated with inflammatory responses and cytokine production against common dietary proteins in patients with autism spectrum disorder, and Preliminary evidence of the in vitro effects of BDE-47 on innate immune responses in children with autism spectrum disorders Other factors known to be markers of succeptibility to seizures, such as IL-10 and IL-1beta have been observed in ratios that are suggestive of additional risk to seizure in some studies. I could post those if anyone is interested, but this post is getting pretty lengthy as it is.
It just so happens that having a seizure early in life has been found to increase succeptibility to later neurologic injury by causing chronic glial activation. Glial activation links early-life seizures and long-term neurologic dysfunction: evidence using a small molecule inhibitor of proinflammatory cytokine upregulation.. Here researchers found that if seizures were initiated in young rats, the animals went on to display behavioral abnormalities, chronically activated microglia cells, and increased succeptibility towards epilepsy later in life. All three of these findings have parallels to what has been observed in autism.
Boiled down, we know that a single immune response during early life has been shown to result in permenant changes to brain functioning into adulthood in animal models. Those changes include increased succeptibility to exaggerated neural excitation, the consequences of which can include behavioral, physiological, and neurological changes similar to what is observed in many cases of autism. If an increasingly aggressive vaccination schedule with its consequent immune responses earlier and earlier in our children's lives is having a similar impact, we would never know based on our existing set of research.
We are doomed.
- pD
[PS - I am hopeful the embedded links will work; posting the entire string for pubmed references was just not rendering very cleanly.]
Posted by passionless Drone on 03/02/2009 @ 07:28AM PT
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