SEEKING THE TRUTH ABOUT THE NEVER-VACCINATED
http://www.ageofautism.com/2007/12/seeking-the-tru.html
Editor's
Note: Sandy Gottstein of
Vaccinations News is a pioneer in the
struggle to get public health officials to
study autism in never-vaccinated children.
At our invitation, she describes her long
and courageous effort to bring this
common-sense idea to life. Sandy, who does
not have an affected child, deserves a vote
of thanks from the autism community for her
perseverance and clarity on this fundamental
issue.
--
A tree fell in a forest, but no one was
there to hear it. Did it really happen?
Who doesn't know the story of the proverbial, fallen tree? Who really cares, though? Isn't it just a fun, arguable, almost silly riddle?
The "experts" would have us believe that the things we don't know about don't exist. They would have us believe that the alleged absence of evidence is evidence of absence.
Of course, this is nonsense. Ignorance may indeed feel like bliss, but in the real, material world, knowing has nothing to do with being. But will we ever know the truth?
If the "experts" have anything to say about it, heck, no. If people like me have anything to say about it, hell, yes.
The fact that never-vaccinated children have not been studied has long been my focus and concern.
I've been embroiled in the vaccine issue ever since 1982, when my first child was born. By the time my second was 6 months old in early 1987, I was pretty much done with vaccinations. (Although I had serious misgivings, they did each later get a booster tetanus shot.)
No more vaccines, even though neither of my children had any known vaccine damage. No more vaccines, even though the number was almost nothing compared to what children are being injected with today.
What drove that decision? Three main things: a) numerous studies indicating there have been serious problems associated with and likely caused by vaccination; b) the fact that after reading hundreds of studies, not one of them used the only proper comparison group, never-vaccinated children, as controls, and c) the fact that virtually everything we "know" about vaccine safety has been bought and paid for by the vaccine manufacturers.
I also educated myself about the diseases and their seriousness in developed nations like ours, as well as doing everything I knew to improve my children's immune status. That included nursing my sons until they were at least 4 years old.
I first wrote about the "controls" problem in the late 80s during my extended effort to get a philosophical exemption bill passed in Alaska. Surely common sense would prevail, I foolishly thought, given the state of the evidence. But I seriously underestimated the fear factor and over-reliance (in my opinion) on so-called expert opinion.
When it became apparent that nothing was going to happen vis à vis exemptions, and some legislative interest was voiced for it, I decided to take a stab at the information part of informed choice. The main mechanism was to require vaccination records for all deaths of children 7 and under. (Few children older than that were being vaccinated at that time.) Drs. Archie Kalokerinos and Arthur Zahalsky flew to Alaska to help me meet with some of the movers and shakers in the state. Most seemed interested, but in the end it failed because "Public Health" aggressively fought it.
Public Health fought getting information and won. Sounds painfully familiar, eh?
My next formal attempt at getting attention focused on the never-vaccinated issue was in 1993, when I testified to the Institute of Medicine:
"In the 1991 IOM review, the Committee
quite fairly pointed out that it had been
handicapped by the lack of adequate studies,
including the poor design of many. The
Committee also properly concluded that the
absence of appropriate studies meant that
there was insufficient evidence to indicate
whether or not there was a causal
relationship between many of the adverse
reactions being studied and vaccination.
Imponderably, however, similarly flawed
information was cited as evidence AGAINST
causality in their report in a number of
instances.
The Committee's conclusions concerning SIDS
and DPT vaccine are a case in point.
Although they admitted in their review, and
I quote, 'Prior to the 1960's, little was
known about the epidemiology of sudden
infant death syndrome (SIDS)', they
concluded, and again I quote, 'Studies
showing a temporal relation between these
events are consistent with the expected
occurrence of SIDS over the age range in
which DPT immunization typically occurs'.
Without information on the background rate
of SIDS in historically, socioeconomically,
and otherwise comparable never vaccinated
groups, data on the expected frequency of
SIDS merely reflects its incidence among
vaccinated populations, rather than absent
vaccinations, and cannot be considered
accurate or meaningful. Given that such
background information was not presented by
the Committee, conclusions about the absence
of a relationship between SIDS and
vaccination were not justified.
Nor were any studies cited - in fact, to my
knowledge none exist - in which the only
proper control group, never vaccinated
children, was used. If, as is the case in
most studies, 'less recently', but
nonetheless vaccinated, children were used
as controls, and an adverse event can be
either a delayed or long-term consequence of
vaccination, one would EXPECT to find no
differences between the study groups, even
if vaccination HAD caused an adverse event.
Conclusions about causality drawn from any
study with such serious limitations are not
justified.
The fact is, all controls are not equal.
More importantly, many groups are improperly
designated as controls. The 1991 IOM
statement that a nontreatment group, i.e.,
control, might be one using an established
alternate vaccine, is an example of an
improper definition of a control. In no way
can any form of vaccination, whether
'established' or less recently administered,
be considered lack of intervention. The
extent to which various established vaccines
and times since administration of vaccine
are similar to non-vaccination should be
studied, not assumed. Only a placebo, which
in the case of vaccination studies equals
the absence of vaccination, is appropriate.
As to the notion that it is unethical to
withhold vaccination due to 'widespread
acceptance' of vaccination, I would submit
that to the contrary, if anything, it is
unethical to administer vaccinations of
unknown safety and efficacy. It is unsound
to argue we can't withhold vaccines because
of 'widespread acceptance', as the 1991 IOM
Committee did, when the reason there is such
widespread acceptance of vaccinations is
that we have been told the vaccines are safe
and effective. Their argument is
particularly ironic given their finding that
serious consequences can result from the two
vaccines, and lament about the absence of
adequate information. To the contrary, the
conclusion that must be drawn from their
review is that randomized, long-term,
placebo-controlled, prospective clinical
trials are urgently needed, in spite of
ethical concerns about ADMINISTERING
vaccines of unknown safety. Indeed, no
reassuring claims about the infrequency of
any linked adverse event should be made
until and unless the false premises
underlying study designs and the many study
design flaws, including the lack of
reasonable and time appropriate controls,
and reporting system inadequacies, are
corrected."
--
We all know where that went.
After taking a long break from the issue in complete discouragement, the autism crisis reared its ugly head. I had always feared that little would happen until there was a lot of obvious, likely vaccine damage. Those fears, it appeared, were being realized – both the widespread damage and resultant growing interest in the topic.
The Internet was also gaining in use and prominence and it occurred to me that we now had a way to compete with the extensive and expensive propaganda of the multinational drug companies. (Judging by the recent JAMA article on the subject, I may have been on to something!) To that end, my news and information website, Vaccination News (now a non-profit) was launched, in the hopes of providing a means for the public to educate itself and become politically motivated to support better information and the right to choose. After getting a welcome nudge from my friend Nicholas Regush, I also began writing my column Scandals, where the absence of proper controls in vaccination research was a frequent topic of discussion. (Another column, "Out of Control", I never really got off the ground; but it obviously dealt with the issue as well.)
I also had a rally and later gave a slightly revised version of that speech, in which the importance of using never-vaccinated subjects as controls featured prominently. (The newspaper didn't even cover the cold April afternoon rally at which there were around 50 attendants, and at which a mother of a government compensated vaccine-damaged child was one of the speakers.)
But while the political clout of angry parents was growing, little was happening on the never-vaccinated research front.
Then what seemed like a miracle occurred. I was in Washington for a conference unrelated to vaccination and was lucky enough to be free on a day Congressman Burton was holding hearings on autism research funding. So I sat myself in the front row, listening with rapt attention to the unhappy truth about the lack of agency interest in meaningfully studying the issue. Congressman Shays had taken over the hearing, when he suddenly announced that for the first time questions would be taken from the audience. Being in the front row, my wildly waving hand was noticed and I was included in the list of five.
Here is what transpired, and my later response to their comments:
Ms. Mintz. Hi. My name is Sandy Mintz. I
am from Anchorage, AK. I am lucky enough not
to have a child who has been injured by a
vaccine.
My question is, is NIH ever planning on
doing a study using the only proper control
group, that is, never vaccinated children?
Dr. Foote. I am not aware of--but note
carefully what I said, that I am not aware
of--a proposed study to use a suitably
constructed group of never vaccinated
children. Now CDC would be more likely
perhaps to be aware of such an opportunity.
Dr. Boyle. The study that I mentioned
earlier that we are doing in collaboration
with Denmark compares children who received
the MMR vaccine versus children who did not
receive MMR.
Ms. Mintz. But I am saying never vaccinated
with any vaccine. That assumes that other
vaccines don't cause autism, which is what
needs to be studied, not assumed.
Mr. Shays. Let me just say that if you would
turn off your mic, I am happy to have you do
the followup, if you would respond to it.
Ms. Mintz. I'm sorry.
Mr. Shays. No, you don't need to apologize.
And we will go to the next. Do you have any
other comment based on that? The point that
is being made, any vaccination. Could we
just suggest that you take this under
advisement?
Ms. Wharton. The difficulty with doing such
a study in the United States, of course, is
that a very small portion of children have
never received any vaccines, and these
children probably differ in other ways from
vaccinated children. So performing such a
study would, in fact, be quite difficult.
The Denmark study was a study that, in fact,
could not have been done in the United
States, although, of course, these children
did potentially receive some other vaccines,
but simply hadn't received MMR.
Mr. Shays. I will invite anyone who is here
to speak to staff or me afterwards if they
want to augment a comment."
--
While I wasn't able to 'augment my comment'
right after the meeting, here's the gist of
what I later e-mailed to Beth Clay, the
professional committee staff member who was
present at the hearing:
1) There are more than enough never
vaccinated children in the states which
allow philosophical exemptions to conduct a
proper study.
2) If children who have not been vaccinated
are different in ways that prevent them from
getting autism, wouldn't we want to know
that?
Well, wouldn't we?"
--
Nothing I did or said seemed to make a
difference, though. Then another miracle
occurred in the form of Dan Olmsted. His
examination of the Amish and a clinic in
Chicago brought attention to the issue like
never before, even resulting in
Representative Carolyn Maloney introducing a
bill to do just such a study.
As we are sadly learning, however, so far that effort has also led to nothing of substance.
And nothing it will remain, unless more and more of us get involved.
It is hard not to feel completely disheartened, especially being so far away from everyone deeply involved in the issue. My health has definitely suffered because of it. Sometimes, many times, I have wanted to forget the whole thing.
But then I think of the precious children already harmed by vaccines, and my fear that nothing will happen until there are more of them. I think of those we may prevent from being harmed in the future. And I think of the families struggling in ways I never will have to.
I think of all this and more. And the only conclusion I can draw is that there is no turning (my) back.
So continue to face it I will. I can't help but hope, though, that when the never-vaccinated tree falls it is heard far and wide.
The oldest was born with the cord around his neck, had to be resuscitated,had jaundice, and spent many early months with ear infections.(Found out later that some of the antibiotics and pain killers used contained mercury).He had severe food allergies from birth to about age 5, an elimination diet fixed that.He has a lot of family history of auto immune disorders, including thyroid disorder.I think his chance of autism was 1 in 12.And I ate a lot of fish during my pregnancy due to bad medical advice( this was before the mercury content in fish was so commonly known)
He also woke up sleep walking during the night til about 7.
One of his allergies was to eggs, so we believe that due to the severity of his allergy when a young baby ( unknown to the doctors at the time he would have been given egg containing vaccines) it is possible the shot would have killed him.
And I do believe, given his other problems, that he could easily have been tipped over into autism.
He never got vaccinated.
He does NOT have autism.
When young he had some ADHD type symptoms, but was never diagnosed.
He is very sociable ,popular, bright and does well in school.Like the other mother, I would be willing to be included in a non vaccinated study.
Posted by: anonymous | March 02, 2009 at 11:09 AM
Posted by: Proud Moma | March 02, 2009 at 08:54 AM
Thank you, Gizzelle
Posted by: Gizzelle ROjas Boccia | January 28, 2009 at 09:14 PM
Posted by: Luke | January 28, 2009 at 05:40 PM
I have always thought that if a study WAS ever done on the non-vac'd child then I'd like to get my boys involved.(as long as its observation and not poking and prodding)Can you tell me if there are any studies in the works or how to find out about one? Any courageous masters students willing to tackle the issue? Thanks for your time,
Sheila
Posted by: Sheila | April 16, 2008 at 11:20 AM
Posted by: Sandy Gottstein | April 03, 2008 at 12:41 PM
Posted by: Christine Wyndham-Thomas | December 21, 2007 at 02:21 AM
As for my email not working, I'm not sure what happened. It may have been something temporary, as I'm having problems off and on with my email. Here are 3 email addresses that I have right now for the site: sandy@vaccinationnews.org, sandy@vaccinationnews.com and donations@vaccinationnews.org.
All the best, Sandy
Posted by: Sandy Gottstein | December 20, 2007 at 10:01 AM
Carol
Posted by: Carol Turner | December 19, 2007 at 11:54 PM
Carol
Posted by: Carol Turner | December 19, 2007 at 09:29 PM
I hope you are able to find solutions for your family. All the best, Sandy
Posted by: Sandy Gottstein | December 19, 2007 at 11:55 AM
Posted by: Le Anna | December 19, 2007 at 02:17 AM
I will be hoping and praying for you and your family.
Posted by: Sandy Gottstein | December 18, 2007 at 12:37 PM
Thank you so much for all the hard work you have put into your efforts to inform the public about what is the most important issue of our time, vaccines and their inherent dangers. I, too, was ignorant about their ingredients, effectiveness and safety prior to almost fully inoculating my two children. For that ignorance, my beautiful children (yes, both of them) will suffer for the rest of their lives. I have hope, because they have language, that they will continue to improve. They have been mainstreamed in Kindergarten, and I am so grateful for that, but their futures are surely uncertain. I am horrified as I see more and more vaccines mandated in my very state, knowing full well what will come from that, and understanding that way too many parents are misinformed, and completely unaware of the dangers. The scale is being further tipped toward autism for all.
That you run such a vital website without even having autistic children of your own is a testament to your humanity. I keep hoping that more parents will get involved to stop this madness. I have responded by writing to my state legislators, so far to no effect. How I wish more parents and people in general would wake up before either they or their children are impacted as well.
Once again, Sandy, thank you so much for all of your hard work. You have helped me and my family greatly, and I don't even know you. A check is in the mail to you today!!! God bless you.
Posted by: Gayle | December 18, 2007 at 09:43 AM
Posted by: Stephen Pettengill | December 17, 2007 at 02:54 PM
Posted by: Sandy Gottstein | December 16, 2007 at 09:22 PM
Posted by: Sandy Gottstein | December 16, 2007 at 08:53 PM
Similar studies could be done using various ways of finding non-vaccinated children. Results of Generation Rescue's study ought be submitted for publication in a peer-reviewed journal.
Posted by: Teresa Binstock | December 16, 2007 at 07:59 PM
Posted by: Sandy Gottstein | December 16, 2007 at 03:17 PM
As I read your story, I experienced the gamut of emotions:
Regret – that my son had been born a decade too early (missed out on recovery efforts while he was young) or too late (missed out “dodging the bullet” of the 90’s vaccine schedule);
Remorse – that I wasn’t as diligent as you in researching the vaccines BEFORE I held my son down;
Resignation – over the fact that not much has changed in the 25 years since you first tried to “sound the alarm” regarding the dangers of vaccines; and
Anger – that the madness continues.
Thank you for helping to sound the alarm – I just wish I had heard it earlier.
Kelli