Re: NAA flip-flopped, too (was: Safeminds statement on CAA- Bernard Rimland)

[Guest guest]

Hi Lenny,

IMO, the straight line through all NAA/SM actions regarding CAA is to get the

strongest

possible bill out of this Congress. Not a magical Unicorn Congress, this

Congress.

> >

> > Bob,

> >

> > Here is a statement from Bernie Rimland on CAA.

> >

> -snip-

>

[Guest guest]

,

In your effort to help NAA and SafeMinds in their attempts to revise

history you are being disrespectful to those of us, including Dr.

Bernie Rimland and Dr. McCandless, who also wanted the

strongest possible bill but were wise enough to realize when the

price for getting ANY CAA bill passed wasn't worth the price our

children would ultimately have to pay.

Tread carefully...Lenny is not the only one to save e-mails that

could tell the community the REAL story.

For all parties concerned, it would be best to end this thread

before the true hypocrisy of the CAA and its champions is revealed.

Some of us, who have tried to keep quiet or restrict our comments to

relatively private e-mails, are running out of patience at the

unabated cheap shots and snide remarks against those groups who

withdrew their endorsement of the CAA by those attempting to justify

their own actions while trying to take credit for any advancement in

the community.

This community is splintered enough...let's not rent it asunder.

Lujene

NoMercury

Hi Lenny,

IMO, the straight line through all NAA/SM actions regarding CAA is

to get the strongest possible bill out of this Congress. Not a

magical Unicorn Congress, this Congress.

[Guest guest]

> > >

> > > Bob,

> > >

> > > Here is a statement from Bernie Rimland on CAA.

> > >

> > -snip-

> >

>

[Guest guest]

Lenny;

My husband once gave me some advice.

He said that if I ever find myself in a discussion where anger, hatred, and belittling overshadows the will to promote positive change; where activity is mistaken for productivity; where passion is used more as fuel than a tool; where nothing I say will ever bring peace; where reasoning is pointless to the unreasonable;...then such arbitrary conversations deserve nothing more than an arbitrary reply. Then he gave me an example. He said, " Something along the lines of, " 'I like cheese.' "

So, please let the record show...

I like cheese.

On 8/29/06 3:12 PM, " schaferatsprynet " <schafer@...> wrote:

Here too along with Mark Blaxill of SafeMinds, the NAA flip-flops its

position on the CAA:

On July 5 on the EOHarm list Fournier announced:

" NAA absolutely agrees with Dr. Rimland. We sent out an action alert

today, as did A-CHAMP, asking everyone to contact the HELP committee

members right away and demand that the vaccine research language stay

intact in the bill. [. . .] Let them know that you want a bill that

will actually help our kids, not just a billion dollar gift to the CDC

and more useless research. "

(The full NAA statement is below.)

Between now and then, the facts surrounding the CAA did not change

very much, yet our friends Mark and the NAA turned a 180 days later

over a completely different internal interpretation of those facts.

Too bad, their initial instincts on the CAA were right on the money.

These friends are now offended at ridicule heaped at them for their

indecisive leadership. Go figure. . .

ly, we should not intend to let our children be sold short by

friends again, no matter how well-meaning.

Lenny

From Fournier:

NAA absolutely agrees with Dr. Rimland. We sent out an action alert

today, as did A-CHAMP, asking everyone to contact the HELP committee

members right away and demand that the vaccine research language stay

intact in the bill. The bill language was written and agreed upon by

all of the major autism organizations in the US. It wasn't easy.

NAA, SafeMinds, No Mercury, A-CHAMP, Moms Against Mercury, GR (sorry

if I've left anyone out) and others fought to have vaccine research be

included in the bill and refused to support the CAA without it. All

of the organizations finally agreed and came to a concensus. But now

that the bill is about to be brought to the floor, there is pressure

from certain unnamed legislators to take the vacccine language out and

some of the organizations involved seem willing to let that happen at

this point, instead of sticking with the concensus and doing for

what's right for our children. If you are a supporter of a national

autism organization, let them know that you want them to fight for

this language.

This is YOUR bill! It's not too late to sway the committee. PLEASE

make phone calls and send faxes to the HELP committee members. Ask

all of your family and friends to do the same. Let them know that you

want a bill that will actually help our kids, not just a billion

dollar gift to the CDC and more useless research.

Fournier

NAA

>

> Bob,

>

> Here is a statement from Bernie Rimland on CAA.

>

-snip-

[Guest guest]

Hi Lujene,

I am not being disrespectful of any org or individuals decision re: CAA. The

choice is

either work with this Congress or walk away, and IMO there are valid reasons for

either

position. (and I thought the unicorn line was funny.)

I agree we should drop this thread. You know I'm a big fan of No Hg, MAM and

ACHAMP,

as well as SM and NAA. I'm sure our common interests will survive CAA.

>

> Hi Lenny,

>

> IMO, the straight line through all NAA/SM actions regarding CAA is

> to get the strongest possible bill out of this Congress. Not a

> magical Unicorn Congress, this Congress.

>

>

>

[Guest guest]

I LOOOOOOVVVVEEEEE Cheese...all kinds of cheese....(but NOT cheese

Doritos -- too messy!)

> >> >

> >> > Bob,

> >> >

> >> > Here is a statement from Bernie Rimland on CAA.

> >> >

> > -snip-

> >

> >

> >

>

[Guest guest]

ooohhhh " Cheese Whiz " in a can! Think: Hammy in " Over the

Hedge " ...so convenient...so portable....so nutritious.....

> > >> >

> > >> > Bob,

> > >> >

> > >> > Here is a statement from Bernie Rimland on CAA.

> > >> >

> > > -snip-

> > >

> > >

> > >

> >

>

[Guest guest]

From: EOHarm [mailto:EOHarm ] On Behalf Of lori mcilwainSent: Tuesday, August 29, 2006 5:56 PMEOHarm Subject: Re: NAA flip-flopped, too (was: Safeminds statement on CAA- Bernard Rimland)

Then he gave me an example. He said, "Something along the lines of, "'I like cheese.'"So, please let the record show...I like cheese.

..

I like pepperoni and mushrooms. I guess that makes me hateful and angry

(but only if they add anchovies.) Do anchovies have mercury?

Is it ok to belittle anchovies?

I can't get a straight answer - too much anger and hate, I guess.

My pappy used to tell me, if you can't come up with an intelligent response,

say something like "anchovies" and then act smug.

Lenny Mel Gibson

anchovies

[Guest guest]

Lenny:

I think that is what has baffled all us the most, a lot of flip-flopping from NAA and SM. If these groups want to continue to lead in the Mercury Community with as I always say(write) the "true power" behind them, the parents, they need to behave like leaders. You can't expect parents to get behind leaders who flip-flop and who will not at every chance made available take a firm stand on this issue. If we do not take the stand there is no one else to do this for our children. If we want someone to deviate on this issue we can call on the CDC or members of Congress to do that for us. Many have posted all the great and wonderful things NAA and SM have done in the past as if this excuses the whole CAA fiasco.

I agree these groups have certainly provided our community with a lot, but next time they may want to:

1.Let other participating organizations know about their POA in DC so that those rep. the hg children could come up with a true unified decision. I for one had no idea that NAA or SM was not going to stick with the consensus bill. I felt from the beginning we were all acting independently and not as a united force during the CAA. Soon into the most recent process of the CAA I was pleased to see a letter written by A-CHAMP which asked all of the participating hg orgs. to sign on. As you know Lenny, Safeminds nor NAA would not sign onto this letter which would have gone out prior to the first DC meeting with the staffers (some of us participated via teleconference). I felt this letter would have conveyed the message we stand united behind the consensus bill. This letter is provided at the end of this post. HOWEVER, during the 1st DC meeting it was revealed that SM and NAA wrote their own letter which they did not ask participating orgs. to sign onto their letter.

2. The second option for the future of any legislation would be to bring in parents who are very savvy in this area of negotiating/legislation/politics. We do have parents in this community who have this sort of experience/background and were not a part of the CAA negotiations in DC. I have asked them to please step up to the plate and help us out. There are lots of task to be accomplished in this movement and the idea that only a select few should be involved in every aspect of what needs to be accomplished will only hurt what we are trying to do for our children. Not any one person can be an expert in every area.

I will say this for the record: IMO I feel this bill, if truly funded, will do far more harm than good for mercury injured children. Frist endorsement should have had all us sticking our oars in the water and going in reverse quickly.

The CAA process.....has not been a winning moment for the mercury injured children's movement.

My 2 cents-

A-CHAMP letter:

July 6, 2006Dear Senator Santorum:We wish to thank you for sponsoring the Combating Autism Act (CAA). As you know, a broad and diverse coalition of autism organizations reached a consensus on a revised version of the bill. The consensus revision of the Combating Autism Act (hereinafter referred to as the “consensus revision bill”) was developed through months of consultation among national leaders in the autism community. We are grateful for the leadership that you and Senator Dodd have shown in introducing this legislation and taking action to make autism spectrum disorder (ASD) a priority in Congress. We write to express our support for the provisions contained in the consensus revision bill, especially the provisions for scientific research of vaccines, and vaccine components and preservatives.Advocates for Children’s Health Affected by Mercury Poisoning (A-CHAMP), is a national, non-partisan organization dedicated to representing thousands of children with neurodevelopmental disorders and their families before Congress and State Legislatures. A-CHAMP is committed to protecting the interests of each child, with the goal of making sure that each child may have the support necessary to live a full and productive life.We have learned that key provisions of the consensus revision bill are not included in the bill that will likely be reported by the HELP Committee to the Senate. More specifically, we understand that the provision of the consensus revision bill identified as Section 499B ( (2) ( (iii), which defines areas of autism research that will be conducted under the auspices of the Autism Centers of Excellence, is excluded from the bill that will go to the Committee markup session. The excluded section provides in relevant part that autism research,…should include research on a broad array of environmental factors that have a possible role in autism including but not limited to vaccines, other biological and pharmaceutical products, and their components (including preservatives).Emphasis added.Please note the quoted language that may be excluded from the bill has been specifically endorsed by most of the major autism organizations in the United States. The removal of the portion of this provision that is italicized above in bold, requiring research into vaccines and vaccine components, including preservatives, as a possible cause of autism is of paramount concern to us. We seek your support to make sure that this specific language is included in the final version of the bill. Our view of this critical language reflects the overriding interest of our community. Enactment of a bill that includes this or similar language is the only legislative directive by which Congress may reflect the will of and responsibly serve the interest of the vast majority of children with ASD or related disorders. As such, we can only support a bill that contains this critical provision.Congress has the power to demand specific areas of research and routinely does so by mandating medical research that is supervised by the Army.We urge you to work with Senator Enzi and encourage the HELP Committee to include the vaccine and vaccine preservative research language in the bill so that any ambiguity regarding the legislative intent of this provision is eliminated.While it contains many flaws, the May 2004 Institute of Medicine (IOM) “Immunization Safety Review: Vaccines and Autism Report” does provide strong support for the autism community’s endorsement for research into the relationship of vaccines, vaccine components and preservatives used in vaccines to autism. Support for vaccine related research can be found also in the statements and findings of many highly regarded researchers and government officials.The 2004 IOM Immunization Safety Review report failed to rule out an association between and vaccines in a subset of the population of children. Indeed, the Vaccine Safety Review report explicitly acknowledged the serious limitations of epidemiological studies on which the IOM relied, noting, “[t]his hypothesis cannot be excluded by epidemiological data from large population groups that do not show an association between a vaccine and an adverse outcome. Depending on the frequency of the genetic defect, a rare event caused by genetic susceptibility could be missed even in large study samples.”Support for vaccine research also comes from Dr. Clements, vaccine adviser to the World Health Organization (WHO). Dr. Clements echoed the need for non-epidemiological vaccine research when he commented that, "t is not possible to prove that [thimerosal] is completely safe – epidemiology can only quantify a risk, not prove its absence.”Similarly, Vaccine Safety Review Committee member Dr. Steve Goodman of the s Hopkins University School of Medicine stated that the IOM did not, contrary to prevailing belief, direct a discontinuation of research into the thimerosal/autism hypothesis. Dr. Goodman explained that the IOM’s statements were misconstrued. Dr. Goodman stated that, “First of all, we didn't dismiss anything. What we did say is if you've got a fixed pot don't spend huge amounts more on epidemiology. What we said was that resources would be better spent on understanding the biology." This view validates research provisions such as those contained in the consensus revision bill.. The best way to follow Dr. Goodman’s recommendation is by including the autism community’s consensus revision language for vaccine research in the Combating Autism Act.Despite recommendations such as Dr. Goodman’s to not expend more funds on population statistical epidemiology, the NIH is doing precisely this, rather than focusing on the neglected areas of biochemistry and biology. The NIH currently supports a $13 million Norwegian epidemiological study to explore how genetic and environmental factors including vaccinations contribute to the development of autism and other neurodevelopmental disorders. The CDC is now conducting a study in Argentina to measure the effects of ethylmercury exposure. It is illogical to tell the autism community that the vaccine language presented in the CAA is unacceptable when vaccine research is already being done in other countries. Nevertheless, the cited efforts are insufficient and must be amplified through a Congressional directive, such as the one we have endorsed.More support for vaccine research comes from key figures in the scientific community. In October 5, 2004 testimony before the House Committee on Appropriations Subcommittee on Labor, Health and Human Services, & Education, Dr. Fauci, Director of the National Institute of Allergy and Infectious Diseases (NIAD) and Dr. Gerberding, Director of the Center for Disease Control (CDC) justified the merit of statutory provisions requiring research into vaccines and autism. Both Dr. Gerberding and Dr. Fauci raised serious questions suggesting that a genetically susceptible population is vulnerable to the cumulative amounts of mercury found in vaccines.In his testimony before the Subcommittee, Dr. Fauci stated,But because of the fact that this is a very complex issue – and there have been some studies that you will hear about later which indicate, at least in an animal model, that there may be a subset, genetic subset, of animals that could be extrapolated to humans, where the susceptibility to mercury toxicity is greater than the population as a whole. This points to the possibility that you may miss some situations where, if you look globally at a population, you are masking some subset as in the mouse studies (Columbia study). So because of that, the NIH is continuing to perform studies in the future to define mercury excretion as well as epidemiological studies that are involve in the etiology of autism.At the Subcommittee hearing, CDC Director Gerberding revealingly commented on the 2004 IOM report’s reliance on epidemiology based on population statistics, when she said that, "Dr. Fauci mentioned the possibility of a susceptible subset of individuals. I don't think any of the studies that have been done so far can completely exclude that possibility."In fact, since the 2004 IOM Report was issued, a growing body of compelling biomedical evidence has been published in peer-reviewed journals showing an association between mercury-containing vaccines the autism epidemic. These studies along with the testimony of Dr. Fauci and Dr. Gerberding support the autism community’s position that the vaccine and vaccine preservative research language should be included in the Combating Autism Act.In a letter sent to Senator Frist, from HHS Secretary Leavitt on November 10, 2005, Secretary Leavitt stated,The role of environmental exposures is not well-understood, but the apparent increase in numbers of affected individuals suggest that environmental factors may play a role in the etiology of autism. A number of recent studies suggest that children with autism may have impairment in specific biological pathways involved in the response to toxicant exposure…Research is still needed to determine if there is an increased risk of autism associated with certain genes in the presence of specific environmental exposures – a gene-environment interaction.In his response to Senator Frist’s question, “What do we know about the differences between ethyl mercury and methyl mercury? And, where do we need additional information?,” Secretary Leavitt revealed that key questions, such as the difference in toxicity between ethylmercury and methylmercury are not sufficiently understood. The central questions to which we require answers, such as whether ethylmercury crosses into the brain and what happens when ethylmercury gets into brain cells are not, according to Secretary Leavitt, sufficiently answered by research. The answers to these questions are largely unknown.In assessing one of the few studies that does examine ethylmercury, an NIH funded study published in 2005, Secretary Leavitt stated that,A higher percentage of the total mercury in the brain was in the form of inorganic mercury in thimerosal-exposed monkeys (ethyl and methyl mercury are organic); however, the significance of this finding is unknown…This study demonstrates that the pharmacokinetics and biodistribution of the ethyl mercury and methyl mercury may not be equivalent.Thus, the Department of Health and Human Services has specifically acknowledged that the scientific research questions regarding the toxicokinetics of ethylmercury and thimerosal remain largely unresolved except for recent NIH funded research. This recent research strongly suggests that ethylmercury targets the brain and may be more toxic to the brain than methylmercury. As concluded by the University of Washington scientists who performed the recent study, more research is necessary.Secretary Leavitt’s acknowledgement that the NIH has already funded thimerosal research but that the significance of some of this research is “unknown”, serves to highlight a dire need for more research. Certainly, this provides a principled and evidentiary justification for including the consensus revision bill language regarding vaccines and vaccine preservatives in the Combating Autism Act. Failure to include such a provision is scientifically unjustified, and reeks of intervention that is purely political.It is more than 70 years since ethylmercury-containing thimerosal was first used in vaccines injected into children. Isn’t it about time that the government made responsible scientific inquiry into the effect of this substance, known to be a potent neurotoxin, on children’s bodies and brains?In an interview on MSNBC’s Imus In the Morning Show, June 22, 2006, you made the following comment in response to a question posed by Mr. Don Imus regarding the Combating Autism Act’s inclusion of vaccine-related research provisions,That’s exactly right and, in fact, we are very, very specific in the bill. We include environmental factors — which, certainly, thimerosal would be one of those — mercury would be one of them — as well as a whole host of other things. We’re doing this in a very comprehensive approach.While we appreciate your remarks, we fail to understand why language calling for research into vaccines and preservatives such as thimerosal cannot be explicitly incorporated in the language of the bill itself, rather than indirectly supported through legislative history, which is always open to the vagaries of political manipulation and interpretation. While the term “environmental factors” may make it to the final version of the Combating Autism Act, the study of vaccines and vaccine preservatives would not, in common parlance, ordinarily be considered “environmental factors” but rather are factors that would more appropriately be considered iatrogenic.We know you will agree with us that good science should not be compromised and that we should encourage scientific inquiry into any area that may provide answers to the cause of autism spectrum disorder. The Combating Autism Act must provide for sound scientific research into all areas and not exclude one controversial area. Considering all that remains unknown, political pressure or industry influence should never interfere with the pursuit of legitimate, albeit troubling, scientific inquiry.The controversy about mercury in vaccines must be addressed, investigated and resolved. Unless this controversy is addressed confidence in our immunization program will continue to erode. More importantly, if Congress fails to act, a vital area of research that could provide new avenues for treatment will mistakenly be dismissed.Parents have a right to know the truth about what has happened to their children. The Combating Autism Act has the potential to provide the means to conduct research that will answer outstanding questions and settle the debate. We strongly urge you to work with your colleagues to ensure that the provision for vaccine and vaccine preservative research endorsed by the autism community is enacted in this legislation.Respectfully,A-CHAMPcc:Senator Enzi, Chair HELP Committee M. Kennedy. M. KennedySen. Judd GreggSen. Bill FristSen. Lamar Sen. BurrSen. ny IsaksonSen. Mike DeWineSen. EnsignSen. Orrin HatchSen. Jeff SessionsSen. Pat Sen. DoddSen. Tom HarkinSen. Barbara MikulskiSen. Jeff BingamanSen. Patty MurraySen. Jack Sen. Hillary ClintonSen. Jeffords

-----Original Message-----From: EOHarm [mailto:EOHarm ]On Behalf Of schaferatsprynetSent: Tuesday, August 29, 2006 3:12 PMEOHarm Subject: NAA flip-flopped, too (was: Safeminds statement on CAA- Bernard Rimland)

Here too along with Mark Blaxill of SafeMinds, the NAA flip-flops itsposition on the CAA:On July 5 on the EOHarm list Fournier announced:"NAA absolutely agrees with Dr. Rimland. We sent out an action alerttoday, as did A-CHAMP, asking everyone to contact the HELP committeemembers right away and demand that the vaccine research language stayintact in the bill. [. . .] Let them know that you want a bill thatwill actually help our kids, not just a billion dollar gift to the CDCand more useless research." (The full NAA statement is below.)Between now and then, the facts surrounding the CAA did not changevery much, yet our friends Mark and the NAA turned a 180 days laterover a completely different internal interpretation of those facts.Too bad, their initial instincts on the CAA were right on the money. These friends are now offended at ridicule heaped at them for theirindecisive leadership. Go figure. . .ly, we should not intend to let our children be sold short byfriends again, no matter how well-meaning.LennyFrom Fournier:NAA absolutely agrees with Dr. Rimland. We sent out an action alerttoday, as did A-CHAMP, asking everyone to contact the HELP committeemembers right away and demand that the vaccine research language stayintact in the bill. The bill language was written and agreed upon byall of the major autism organizations in the US. It wasn't easy. NAA, SafeMinds, No Mercury, A-CHAMP, Moms Against Mercury, GR (sorryif I've left anyone out) and others fought to have vaccine research beincluded in the bill and refused to support the CAA without it. Allof the organizations finally agreed and came to a concensus. But nowthat the bill is about to be brought to the floor, there is pressurefrom certain unnamed legislators to take the vacccine language out andsome of the organizations involved seem willing to let that happen atthis point, instead of sticking with the concensus and doing forwhat's right for our children. If you are a supporter of a nationalautism organization, let them know that you want them to fight forthis language.This is YOUR bill! It's not too late to sway the committee. PLEASEmake phone calls and send faxes to the HELP committee members. Askall of your family and friends to do the same. Let them know that youwant a bill that will actually help our kids, not just a billiondollar gift to the CDC and more useless research. Fournier NAA>> Bob,> > Here is a statement from Bernie Rimland on CAA. > -snip-

[Guest guest]

IMO, I think " flip-flopping " has gotton a bad name (thanks W). I change my

mind from time to time- based on the situation before me. And situations

change.

Also, I don't have the time or honestly the brainpower at this point to read

the whole bill and make an educated judgement. But, from everyone's

reaction and from my gut- I just don't like CAA. I didn't like when they

asked for money in the military budget for autism and wouldn't tell us what

it would be spent on or who would be making the decisions. But, it's for

autism- so I'm supposed to say " yes " . That's bullshit (to quote the great

Blaxill). My dad (who tries so hard) would go to NAAR walks because it was

" for the cause " and I'd get mad. But, what else was he going to do?

Thankfully, we started our own conference here (with biomed info) and he

volunteered there too (and I felt better-lol).

Anyway, I'm glad there is a debate, but I think TPTB should have had this

debate months ago, because there seems to be a lack of communication between

people and groups. Everyone goes off and does their own thing- and then

gets mad when everyone doesn't sign on or agree. No one likes to be shut

out of the process. Maybe we can learn from this and correct some of our

mistakes.

I'm not going to judge any of these groups or people- because most of them

have done more in 1 day for the autism community what other people do in the

lifetime (just read EOH). And I know you can't write a lot on this list

publically because it's monitored and you don't want meetings to be

cancelled (or whatever). But, I think we really need to stay focused. They

are all laughing at us right now. I vote to do something productive and for

the cause...... any ideas? any state thimerosal bills we can work on?

any walks we can plan? conferences we can promote (like DAN)?

Thanks

, in rainy NY

[Guest guest]

Ahem.

For the record, the WHALE is not a fish.

-------------------------------------------

> Wittle Wenny

>

>

> Next Friday night your all invited

> To dance from 8 to 5

> All the fishes still alive

> Are having a ball

>

> Its some affair they'll all be there

> From the Herring to the Whale

> They'll turn out to shake a scale

> In Neptune's Hall

>

> Come along and follow me

> To the bottom of the sea

> We'll join in the Jamboree

> At the Codfish ball

>

> Lobsters dancing in a row

> Shuffle off to Buffalo

> Jelly fish sway to and fro

> At the Codfish ball

>

> Finn-an-haddie leads the eel

> Through an Irish reel

> The Catfish is a dancing man

> But he can't can-can like a sardine can

>

> Tunas trucking left and right

> Minnies mooching what a night

> There won't be a hook (hg) in site

> At the Codfish ball

>

>

> [shirley Temple, Captain January]

>