Montygram
Sun, Oct-30-05, 17:16
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_2-
4?s_name=&no_ads=
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: dolmsted@upi.com
Copyright 2005 by United Press International. All Rights
Reserved.
Source: http://www.sciencedaily.com/upi/index.php?feed=Scienc-
e&article=UPI-1-20051030-10222300-bc-ageofautism.xml
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_2-
4?s_name=&no_ads=
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: dolmsted@upi.com
Copyright 2005 by United Press International. All Rights
Reserved.
Source: http://www.sciencedaily.com/upi/index.php?feed=Scienc-
e&article=UPI-1-20051030-10222300-bc-ageofautism.xml