Medical Forum / General / Alternative / October 2005
Investigating the "autism epidemic."
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montygram - 30 Oct 2005 23:10 GMT Here's a journalist who has encountered some of the same problems I have. He asks a simple question about doing an easy and inexpensive study to determine whether "orthodox" notions, which have never been established in a way that meets the standards of the scientific method,
contain some major problems. If one starts asking scientific questions, the "experts" in charge realize, light will be cast on how tenous their claims are. However, one thing they cannot do is change basic information, mainly demographic data, much of which is available on the internet now (for instance through the WHO site), as well as the
biochemical studies (the abstracts of which are mostly available, at www.pubmed.com). And that is why I am attempting to explain how one can use this evidence to make decisions that should add decades onto your life (lived in great health!). Does anyone have detailed information on "typical" Amish diets? It appears that they do not use any of the refined and highly polyunsaturated oils that are in almost everything in the "typical" American diet these days (even in "health food stores" you find that canola, sunflower, safflower, etc., oils are
in many of the prepared foods they sell. Supposedly, there is very little "heart disease" and cancer in these populations as well. They don't need to take fish oil pills or eat salmon. "Though their diet consists of meat, potatoes, gravy, cakes, and eggs, the Amish have extremely low rates of heart disease and cancer." http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/1074778113932_24?...
The vaccinations may set off a chain of reactions, but I doubt that this would be a problem if the childrens's bodies were not made into a bubbling cauldron of biochemical activity by eating large amounts of these oils, along with foods high in iron and other co-factors that are
common in the "typical" American diet.
The Age of Autism: The Amish Elephant By DAN OLMSTED
A specter is haunting the medical and journalism establishments of the United States: Where are the unvaccinated people with autism?
That is just about the only way to explain what now appears to be a collective resistance to considering that question. And like all unanswered questions, this raises another one: Why?
What is the problem with quickly and firmly establishing that the autism rate is about the same everywhere and for everybody in the United States, vaccinated or unvaccinated? Wouldn't that stop all the scientifically illiterate chatter by parents who believe vaccinations made their children autistic? Wouldn't it put to rest concerns that -- despite the removal of a mercury-containing preservative in most U.S. vaccines -- hundreds of millions of children in the developing world are possibly at risk if that preservative is in fact linked to autism?
Calling this issue The Amish Elephant reflects reporting earlier this year in Age of Autism that the largely unvaccinated Amish may have a relatively low rate of autism. That apparent dissimilarity is, in effect, a proverbial elephant in the living room -- studiously ignored by people who don't want to deal with it and don't believe they will have to.
Here are a few cases in point.
Earlier this month the National Consumers League conference in Washington held a session on communicating issues around vaccine safety. I was on the panel and talked about the Amish and autism. In the Q&A session that followed, the first question was for me.
"Is this a proper role for a journalist, or is this just a straw dog set up there with a preliminary answer? It not only showed up where you
wrote it. It was all over the place. You did very, very well for UPI (at which point I said, 'Thank you -- please tell my bosses that!') but
the question is, did you do very, very well for America?
"Is it appropriate for a journalist -- you weren't reporting, you were investigating. And I just wonder if you think it's an appropriate role for you to play."
My answer: "There's different roles for the press. That's certainly a reasonable question. That is investigative reporting. This idea is something that's already been discarded -- that there's any reason why you would want to look in an unvaccinated population.
"One of my favorite comments about journalism is that it's the wild card of American democracy. The First Amendment says we can do (in the sense of reporting about) whatever we want. So one of our privileges is
to get an idea in our head and go look at it."
My questioner was not finished. "I wasn't questioning whether you have a First Amendment right to do it. I think this is more of a question of
the ethics, of what value we are bringing to the debate."
My response: "That's probably not a good one for me to answer. Obviously I thought it was ethical."
At that point a fellow panelist, Dr. Louis Cooper, former president of the American Academy of Pediatrics and a staunch vaccine defender, spoke up. "I would jump in and say I thought it was ethical and I think
it was useful," said Cooper, a courtly and unfailingly courteous Manhattan pediatrician.
"As you've learned, it was annoying to many people. I wasn't annoyed by
it because I thought you kept the process and the debate and the discussion going forward. And we have to do that for one another."
That did not end the discussion. A few minutes later a public-health professor from -- where else? Harvard -- did her own version of Jeopardy!, offering the correct "answer" in the form of a question.
"This question is for Dan. Did you mention the outbreak of polio that happened in the Amish community in the Netherlands that caused widespread problems there, and also the fact that there'd been some context with respect to history in our country in trying to reach out to the Amish to actually encourage them to try to benefit from some of the vaccine technology to the extent that we could?
"So there's been a long history in this country of the CDC trying to reach out to them to the extent that they could. Also with respect to polio, I think what's really amazing is it's such a great story, this is such an exciting time, in the sense that we are very close to global
eradication. What that means is we've gone from 1988 when we had 350,000 estimated paralytic polio cases in the world every year to roughly a thousand. It's very exciting that in fact we don't have the terror or the hysteria and all of the fear that surrounded disease.
"I just want to remind everyone that one thing that's very important in
the context of reporting these stories is making sure that people do remember and also realize with infectious disease is these things can come back, and until they are eradicated they can come back and devastate us just as much as they did before, except now there are a lot more people.
"There's some related news that people might find interesting. A headline in the Washington Post today, 'Polio outbreak occurs among Amish families.' So I thought people might be interested in that."
At that point the moderator, Dr. Roger Bernier of the Centers for Disease Control, said time was getting short -- why was I not surprised? -- and asked for the next "question."
One thing I've noticed is the more that people want to lecture instead of learn, the more they speak in breathless run-on sentences that are hard to stop, slow down or even diagram. They leave one with the unspoken idea that dialogue -- opening the door to new information -- is somehow dangerous.
These exchanges reminded me of the response I got from Dr. Julie Gerberding, the CDC director, when I asked her this summer, verbatim: "Has the government ever looked at the autism rate in an unvaccinated U.S. population, and if not, why not?"
Her answer, verbatim:
In this country, we have very high levels of vaccination as you probably know, and I think this year we have record immunization levels
among all of our children, so to (select an unvaccinated group) that on
a population basis would be representative to look at incidence in that
population compared to the other population would be something that could be done.
But as we're learning, just trying to look at autism in a community the
size of Atlanta, it's very, very difficult to get an effective numerator and denominator to get a reliable diagnosis.
I think those kind of studies could be done and should be done. You'd have to adjust for the strong genetic component that also distinguishes, for example, people in Amish communities who may elect not to be immunized (and) also have genetic connectivity that would make them different from populations that are in other sectors of the United States. So drawing some conclusions from them would be very difficult.
I think with reference to the timing of all of this, good science does take time, and it's part of one of the messages I feel like I've learned from the feedback that we've gotten from parents groups this summer (in) struggling with developing a more robust and a faster research agenda, is let's speed this up. Let's look for the early studies that could give us at least some hypotheses to test and evaluate and get information flowing through the research pipeline as quickly as we can.
So we are committed to doing that, and as I mentioned, in terms of just
measuring the frequency of autism in the population some pretty big steps have been taken. We're careful not to jump ahead of our data, but
we think we will be able to provide more accurate information in the next year or so than we've been able to do up to this point. And I know
that is our responsibility.
We've also benefited from some increased investments in these areas that have allowed us to do this, and so we thank Congress and we thank the administration for supporting those investments, not just at CDC but also at NIH and FDA.
The latest response to my pesky persistence comes not from academia or government but from my own profession. Last week the prestigious Columbia Journalism Review published an article whose main thrust -- with which I concur -- was that a vigorous debate over a possible link between vaccines and autism was being thwarted by the self-induced timidity of the press.
Some reporters told the author, Daniel Schulman, that they have basically given up on the story because the criticism -- some of it from their own editors -- was so fierce, and the story was so complicated.
Schulman described Age of Autism's efforts to come at the issue "sideways," looking for possible clues to the cause of the disorder in the natural history of autism. And he mentioned our reporting on the Amish:
"Privately, two reporters told me that, while intriguing, Olmsted's reporting on the Amish is misguided, since it may simply reflect genetic differences among an isolated gene pool. ... Both reporters believed that Olmsted has made up his mind on the question and is reporting the facts that support his conclusions."
Ouch. Being slammed by one's peers is never enjoyable, although reporters need to have thick skins and realize they dish this kind of thing out every day. (And those anonymous sources really are annoying, especially when I am happy to be quoted by name about everything.)
What's interesting about the reporters' "private" remarks is the degree
of presumed expertise they suggest -- that looking at the Amish is misguided "since it may simply reflect genetic differences among an isolated gene pool." Really? Where did these guys get their doctorate in genetics, Harvard?
This assertion -- that the Amish gene pool could explain everything, based on no data that I'm aware of -- is the kind of self-interested speculation masquerading as expertise that has beset the autism-vaccines discussion for far too long. The term I learned for it long ago is "convenient reasoning," and it does not always have to be conscious.
The Amish have all kinds of standard genetic mental and developmental disorders -- from bipolar to retardation -- and a lot more genetic issues to boot from this supposedly protective "isolated gene pool." The doctors who actually know something about the Amish have never suggested to me that genes have anything to do with a low rate of autism. They seem perplexed.
In upcoming columns, we'll put that question to the right people -- geneticists -- and tell you what we find. It's called reporting.
This ongoing series on the roots and rise of autism welcomes reader response. E-mail: dolms...@upi.com
Copyright 2005 by United Press International. All Rights Reserved.
Source: http://www.sciencedaily.com/upi/index.php?feed=Science&article=UPI-1-...
Mark Probert - 30 Oct 2005 23:20 GMT > Here's a journalist who has encountered some of the same problems I > have. He asks a simple question about doing an easy and inexpensive [quoted text clipped - 32 lines] > The Age of Autism: The Amish Elephant > By DAN OLMSTED Here is the other side of the story....
From http://www.cjr.org/issues/2005/6/schulman.asp
Olmsted, a former assistant national editor at USA Today, found his way into thimerosal through another medical side-effect story. It involved an antimalarial drug called Lariam, which was prescribed to Peace Corps volunteers, travelers to third-world countries, and more recently to U.S. troops stationed in Iraq and Afghanistan. As Olmsted and his UPI colleague Mark Benjamin (now a national correspondent at Salon.com) detailed in an investigation that spanned more than two years, starting in 2002, Lariam, which had been approved by the FDA and recommended by the CDC, also appeared strongly linked to psychosis, including homicidal and suicidal behavior. Partly because of their reporting, the effects of Lariam are now under study by the Pentagon. “If it hadn’t been for Lariam, I don’t think I would have ever thought twice about autism,” Olmsted told me. “With Lariam, CDC officials said many times that there’s absolutely no problem with side effects from this drug, it’s extraordinarily safe. That’s just not true.”
Instead of wading directly into the thimerosal controversy, Olmsted approached it, as he puts it, “sideways.” By this he means that after reading what had been written on autism and noticing a relative dearth of material about its origins, he set out to write a natural history of the disorder.
Eventually, Olmsted began thinking of ways to test the thimerosal theory. He wondered whether researchers had ever examined the prevalence of autism in an unvaccinated population, such as the Amish. That, it would seem, would be the most likely way to determine whether the vaccine link held water. If the number of autism cases among the unvaccinated mirrored the national average, then it would seem that thimerosal played no role. Olmsted found that though researchers had discussed such a study, none had ever been done. “That’s an expensive study,” he said, “but for a journalist all you have to do is get on the phone and start asking.” After spending weeks searching for cases among the Amish of Lancaster County, Pennsylvania, he managed to find three children with autism, two of whom had been vaccinated, a rarity in that community. “The cases among the Amish that I’ve identified over the past several weeks appear to have at least one link — a link made of mercury,” Olmsted wrote in a column on May 20, referring to the vaccinated children. “That’s not something I expected to encounter.” Looking at other large Amish populations in the Midwest, such as those in Middlefield, Ohio, and Goshen, Indiana, Olmsted found similarly low autism rates. He admits that his findings are not scientific. “I could be getting a completely wrong impression from what I’m finding, but it’s interesting,” Olmsted told me. Interesting enough to get the attention of members of Congress, including Representative Dave Weldon of Florida and Senator Joseph Lieberman of Connecticut; officials at the Department of Health and Human Services; and researchers, including Mady Hornig, the Columbia epidemiologist, who now hopes to devise a study looking at the Amish.
Privately, two reporters told me that, while intriguing, Olmsted’s reporting on the Amish is misguided, since it may simply reflect genetic differences among an isolated gene pool (Hornig, however, said that a study on the Amish may still be valuable should the prevalence of autism in that community indeed be low, allowing researchers to study the genetics of people who are not susceptible to the disorder). Both reporters believed that Olmsted has made up his mind on the question and is reporting the facts that support his conclusions.
“I’ve just tried to find a way to get into this that adds something to the debate and is original,” Olmsted said.
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Olmsted went out to look for proof of his theory and found it while rejecting anything that disagreed with it. IOW, he is full of feces.
montygram - 31 Oct 2005 04:16 GMT I don't really care if he's "made up his mind." He is doing something our "experts" rarely do, that is, investigating all the good possibilities. In reality, our "experts" are much more likely to make grand pronouncements before the evidence is in. And whenever our "experts" can't explain something, they say, "oh, it must be a genetic thing." Aren't you getting tired of hearing that at this point? If there are such differences, why don't they investigate them thoroughly instead of spending billions of dollars on things that don't lead to cures? They are playing a slightly more sophisticated version of the old shell game. "Genetics under the shell on the right."
And do you realize that there is plenty of biochemical evidence available that should, at the very least, lead to RELEVANT studies that determine what exactly is responsible for the "epidemic?" Under these circumstances (that is, total failure on the part of the "experts" in positions of authority), there is no reason for a person who has a child afflicted with autism not to try different diets. The highly unsaturated oils have only been consumed in large amounts only over the last few decades, and they are not necessary in any way, so why not remove them from your child's diet for a few months and see what happens? You don't need to wait for the "experts" to tell you what to do. The biochemical evidence demonstrates how unstable these oils are, and while one can eliminate other things, like food high in iron, foods that have excitotoxic qualities, oxidized cholesterol, etc., the first thing to eliminate seems to be these oils. Butter or coconut oil are much more biochemically stable, and you can cook at low temperatures to avoid creating a lot of toxic molecules. If you eat meat, boil it, then add it to a sauce that you can warm up on low heat (containing butter or coconut oil).
There is a known biochemical phenomenon related to arachidonic acid turnover and metabolziation in the brain, but I won't go into details here. You can search google for arachidonic cascade, for exmaple, if you want to read about it. The point is that you can knock out this biochemical problem and see what happens. There is no "down side."
Mark Probert - 31 Oct 2005 15:37 GMT > I don't really care if he's "made up his mind." He is doing something > our "experts" rarely do, that is, investigating all the good [quoted text clipped - 10 lines] > available that should, at the very least, lead to RELEVANT studies that > determine what exactly is responsible for the "epidemic?" Agreed. We have wasted billions and many years on investigating this bullshit vaccine-MMR-thimerosal crap. Now, lets go find out what is really happening.
Under these
> circumstances (that is, total failure on the part of the "experts" > in positions of authority), there is no reason for a person who has a [quoted text clipped - 17 lines] > you want to read about it. The point is that you can knock out this > biochemical problem and see what happens. There is no "down side."
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