E-Newsletter May 2009 #1

Here is your update on TACA (Talk About Curing Autism). If you are new to our site... WELCOME! This newsletter is produced two to four times each month.

We are an autism education and support group. We want to make this e-newsletter informative for you. As always, contact us your thoughts and/or questions so we can improve it.

We focus on parent information and support, parent mentoring, dietary intervention, the latest in medical research, special education law, reviews of the latest treatments, and many other topics relating to autism. Our main goal is to build our community so we can connect, share and support each other.

Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.

In this edition:

TACA News

1.  Find a TACA Meeting

2.  5th Annual Family & Friends campaign and awareness drive

3.  Shop for a Cause - Community Shopping Day

4.  New Parent Seminars

General News

5.  Daily Autism Updates for Families

6.  Research suggests children can recover from autism

7.  CDC sits on documents

8.  Autism Recovery: Pediatricians Coming Along Slooowly

9.  Conducting Autism Research Like It's 1994

10. Jenny McCarthy's Autism Crusade: Healing, Hope... And Controversy

11. Mainstreaming kids with autism

12. Federal study opens new avenues for mercury pollution research

13. Neighbors, parents spar over autistic boy

14. New DDS Autism Report Released

15. Autism in California increases twelvefold

16. The Swine Flu Vaccine from the 70s

17. From Jay Gordon, MD FAAP: Swine Flu/Tamiflu

18. Penn State Study Results: The GF/CF Dietary Treatment for Children with ASDs

19. In Defense of the "Autism Diet"

20. Smackdown! EPA, FDA and Mercury in Fish

Vaccine News

21. The Judgment on Vaccines Is In???

[go to home page]    

1 Find a TACA Meeting

Come to a TACA Meeting!

TACA holds monthly meetings in many locations throughout the United States that feature educational speakers on important topics and allow family members to connect with one another and stay on top of the latest information in the autism world. Each TACA group maintains a resource library of the latest autism books and tapes that can be checked out by members at no charge.

Check out our group listings: each contains information on TACA meetings and special events as well as a contact form.

Are you wondering what happens at a TACA meeting? Watch our video.

 
2 5th Annual Family & Friends campaign and awareness drive

This year, more than ever, we need your help.  Over the past year the numbers of families TACA serves has almost doubled to 14,000.  We have launched 24 chapters around the country to provide in-community support to those on the autism journey. With your help, we can continue to provide 95% of all programs and services at no charge to families with autism.

With just a few steps you can make a world of difference for children with autism and their families. 

  • Request a free fundraising kit (call 949-640-4401 or contact Roxanne Hall).

  • Launch a personal fundraising web page at www.firstgiving.com/tacanow. Send it out to all your contacts.

  • Use the campaign tools that come in your kit to help raise funds and awareness.

  • See your fundraising totals rise.

  • Enjoy our gratitude (and incentives)! Check out this year’s great incentives.

  • Know that you have made an impact on families living with autism.

View Real Help Now Family & Friends Campaign Presentation

Read Letter from TACA Executive Director, Lisa Ackerman

 
3 Shop for a Cause - Community Shopping Day

Macy's Shop for a Cause Community Shopping Day 2009Macy's • May 16, 2009

Join Macy's in South Coast Plaza, Sherman Oaks, Palm Desert, Del Amo and Victoria Gardens in Southern California for a day-long shopping event that offers the opportunity for TACA to raise funds. Customers will enjoy an exciting day filled with food and beverage samples, entertainment, promotional gifts and a chance to win a $500 shopping spree!

Tickets are $10 and you receive:

  • 10-20% discount on regular price, sale and clearance price merchandise*

  • $10 off one purchase of $25 or more

  • Chance to win a $500 shopping spree

  • Your $10 ticket price goes directly to TACA to support children with autism and their families

Purchase your tickets by calling TACA at 949-640-4401 or come to a TACA meeting.

*Only Cosmetics & Fragrances, everyday values, and handbags by Coach and Dooney & Bourke are excluded from the discount. The customer also can receive $10 off one purchase of $25 or more. This cannot be combined with the 10-20% discount.

Download flyer.

 
4 New Parent Seminars
Atlanta, GA
Hyperbaric Therapy Center, 104 Colony Park Drive, Ste. 500, Cumming, GA 30040
Saturday, June 13, 2009, 9 a.m.-4:30 p.m.

Orange County, CA
Saturday, June 27, 2009, 9 a.m.-4:30 p.m.

After receiving the diagnosis of autism for a beloved child (or children), parents typically struggle as they search through various resources to locate information needed to help their child the fastest. The goal of the one-day New Parent Orientation is to provide parents and caretakers the “jump start” they need at the beginning of their journey from parents who have “been there, done that.” In addition to sage advice, parents who attend will receive: an overview of beginning therapies and biomedical intervention, where to go for what information, and recommended first steps. The seminar will be given by experienced parents who volunteer their time in providing the education new parents need.

Who should Attend?
This one-day seminar is geared for parents and caretakers of children affected by autism. Content will be provided in an “overview” presentation with web and book resource information for additional details. This seminar is geared to parents and caretakers new to the autism journey (less than 18 months) who have not yet started a behavioral/educational program or biomedical testing and interventions.

Register Online

 
5 Daily Autism Updates for Families

All news related to autism:  AgeofAutism.com

For daily updates to all autism legislative issues: ChangeforAutism.org

 
6 Research suggests children can recover from autism

Associated Press
By LINDSEY TANNER, AP Medical Writer
Saturday, May 9, 2009

13:45 PDT Chicago (AP) --

Leo Lytel was diagnosed with autism as a toddler. But by age 9 he had overcome the disorder.

His progress is part of a growing body of research that suggests at least 10 percent of children with autism can "recover" from it — most of them after undergoing years of intensive behavioral therapy.

Skeptics question the phenomenon, but University of Connecticut psychology professor Deborah Fein is among those convinced it's real.

She presented research this week at an autism conference in Chicago that included 20 children who, according to rigorous analysis, got a correct diagnosis but years later were no longer considered autistic.

Among them was Leo, a boy in Washington, D.C., who once made no eye contact, who echoed words said to him and often spun around in circles — all classic autism symptoms. Now he is an articulate, social third-grader. His mother, Jayne Lytel, says his teachers call Leo a leader.

The study, funded by the National Institute of Mental Health, involves children ages 9 to 18.

Autism researcher Geraldine Dawson, chief science officer of the advocacy group Autism Speaks, called Fein's research a breakthrough.

"Even though a number of us out in the clinical field have seen kids who appear to recover," it has never been documented as thoroughly as Fein's work, Dawson said.

"We're at a very early stage in terms of understanding" the phenomenon, Dawson said.

Previous studies have suggested between 3 percent and 25 percent of autistic kids recover. Fein says her studies have shown the range is 10 percent to 20 percent.

But even after lots of therapy — often carefully designed educational and social activities with rewards — most autistic children remain autistic.

Recovery is "not a realistic expectation for the majority of kids," but parents should know it can happen, Fein said.

Doubters say "either they really weren't autistic to begin with ... or they're still socially odd and obsessive, but they don't exactly meet criteria" for autism, she said.

Fein said the children in her study "really were" autistic and now they're "really not."

University of Michigan autism expert Catherine Lord said she also has seen autistic patients who recover. Most had parents who spent long hours working with them on behavior improvement.

But, Lord added, "I don't think we can predict who this will happen for." And she does not think it's possible to make it happen.

The children in Fein's study, which is still ongoing, were diagnosed by an autism specialist before age 5 but no longer meet diagnostic criteria for autism. The initial diagnoses were verified through early medical records.

Because the phenomenon is so rare, Fein is still seeking children to help bolster evidence on what traits formerly autistic kids may have in common. Her team is also comparing these children with autistic and non-autistic kids.

So far, the "recovered" kids "are turning out very normal" on neuropsychological exams and verbal and nonverbal tests, she said.

The researchers are also doing imaging tests to see if the recovered kids' brains look more like those of autistic or nonautistic children. Autistic children's brains tend to be slightly larger than normal.

Imaging scans also are being done to examine brain function in formerly autistic kids. Researchers want to know if their "normal" behavior is a result of "normal" brain activity, or if their brains process information in a non-typical way to compensate for any deficits.

Results from those tests are still being analyzed.

Most of the formerly autistic kids got long-term behavior treatment soon after diagnosis, in some cases for 30 or 40 hours weekly.

Many also have above-average IQs and had been diagnosed with relatively mild cases of autism. At age 2, many were within the normal range for motor development, able to walk, climb and hold a pencil.

Significant improvement suggesting recovery was evident by around age 7 in most cases, Fein said.

None of the children has shown any sign of relapse. But nearly three-fourths of the formerly autistic kids have had other disorders, including attention-deficit problems, tics and phobias; eight still are affected.

Jayne Lytel says Leo sometimes still gets upset easily but is much more flexible than before.

 
7 CDC sits on documents

The Atlanta Journal-Constitution

By ALISON YOUNG, Sunday, April 26, 2009

Employees at the Centers for Disease Control and Prevention have generated about 4,000 pages of documents assessing risks to the agency’s reputation posed by The Atlanta Journal-Constitution’s reporting.

But the CDC is keeping those records secret, despite directives from the Obama administration that federal agencies presume government records are open to the public under the federal Freedom of Information Act.

Release of the CDC  records “would interfere with the agency’s deliberative process and have a chilling effect on employee discussions,” CDC freedom of information officer Lynn Armstrong said in a letter sent this month to the AJC.

The AJC asked for the documents in January 2007, after the newspaper learned that the agency was conducting risk analyses of this reporter’s news-gathering rather than releasing information of interest to the public. At the time, the AJC was pursuing stories about morale problems and an exodus of key scientists from the Atlanta-based agency, CDC ’s chaotic response to Hurricane Katrina, lab animal welfare violations and costly taxpayer-funded construction projects at the agency’s campus on Clifton Road.

For complex document requests, the CDC  reports that its median processing time is just 38 days (and just 11 days for simple requests). But several AJC requests have been pending for a year; some for more than two years.

The newspaper learned CDC  staff were performing risk assessments on my reporting after a copy of one of the SWOT — strengths, weaknesses, opportunities and threats — assessment memos was leaked in the fall of 2006. A few weeks earlier, the AJC requested documents about a $10 million no-bid contract; CDC  officials directed an employee to analyze threats if the information became public. The firm that got the contract was associated with and recommended by a volunteer adviser to then-CDC Director Julie Gerberding.

According to the leaked memo: “No assurance that CDC  received the best value solution to its concerns because [of the] procurement process used.” It noted a “potential conflict of interest” and said “Negative publicity will further question top CDC  management, as it was so involved in the early process.”

After publishing an article about this memo, the AJC filed its January 2007 FOIA request for all other such memos and risk documents. CDC had released nothing until this month, when it sent a response by FedEx on April 1 that contained 46 pages of documents, most of which were copies of articles published in the AJC or other publications, and a letter denying access to about 4,000 other pages of records.

On Jan. 21 — his first full day in office — President Barack Obama issued a memo to all federal agencies reinforcing the importance of the Freedom of Information Act. Government transparency is important to democracy, he said.

“The Government should not keep information confidential merely because public officials might be embarrassed by disclosure, because errors and failures might be revealed, or because of speculative or abstract fears,” Obama said in the memo.

Until recently, federal agencies operated under a 2001 directive issued by then-Attorney General John Ashcroft. His memo directed agencies to emphasize protecting institutional, commercial and privacy interests over public disclosure.

Obama’s memo and additional guidelines issued in March by Attorney General Eric Holder instructed federal agencies to focus on releasing information.

Based on anecdotal reports of documents being released, the openness directives seem to be working, said Lucy Dalglish, executive director of the Reporters Committee for Freedom of the Press, which is based in Washington.

In recent weeks, other federal agencies have released or agreed to release controversial records about terrorism interrogation tactics and bird-airplane collisions. So why did the CDC  withhold in their entirety 4,000 pages of documents about the AJC’s reporting?

Armstrong and CDC risk communication specialist Barbara Reynolds declined to be interviewed. Reynolds works in the CDC  Office of Enterprise Communication, which has a stated mission that includes “environmental scanning to determine emerging threats to the agency’s reputation.”

The Freedom of Information Act presumes that government records belong to the people and only allows information to be withheld for a few, limited reasons, such as national security or to protect trade secrets or medical privacy.

The law allows agencies — at their discretion — to withhold certain internal agency records involving advice, recommendations or opinions that are part of the decision-making process. This is the exemption CDC  cites.

“This is the area where there is the greatest potential for increased disclosure,” said Melanie Ann Pustay, director of the office of information policy at the U.S. Department of Justice. Her office has been conducting training sessions on the new policy.

Officials at the U.S. Department of Health and Human Services, the CDC ’s parent agency, said employees who handle FOIA requests have been briefed on the new policies.

“HHS is committed to honoring FOIA requests in a manner that ensures our department is open, transparent and respects the FOIA,” spokesman Nick Papas said. “If The Atlanta Journal-Constitution decides to appeal the CDC decision on the case in question, that appeal will be reviewed at the department level.”

The AJC has appealed.

 
 
8 Autism Recovery: Pediatricians Coming Along Slooowly
Holly Robinson Peete on HuffingtonPost.com

The other day on the Today Show, Dr. Nancy Snyderman presented a story of a family whose boy has "recovered" from autism.

[Watch it here.]

I sat watching with my mouth open. I was stunned not because the boy made such progress over a disorder that pretty much every pediatrician will tell you is incurable, but because Dr. Nancy Snyderman was actually reporting on it on a major network news program. I had never seen such a thing! You see, we moms in the trenches of autism have been seeing some kids improve dramatically for years and years. We are the ones who have been the coordinators of improvement. The overseers, statisticians and documentarians of progress and recovery. But we are never asked to share that data by the American Associations of Pediatrics or the Center For Disease Control. Our doctor visits were virtually "hope-free". I have seen my own son -- now age 11 -- notch milestones that developmental pediatricians said he'd never, ever achieve. In fact the day he was diagnosed in 2000 at 3 years old is referred to at our home as the "Big Never Day". A disarmingly icy female pediatrician told us our son would "never" do so many things that he does today not the least of which are mainstreaming at school or saying "I love you, Mom" unprompted...check and check!

While I was encouraged by Dr. Snyderman's piece on young Jake Exkorn's success I couldn't help but be a bit cynical because after Matt Lauer said "it's a real sign of hope" Snyderman made such a deliberate point of declaring "and there's real science behind it and that's important". I took that very personally because so many pediatricians I have met with over the last 10 years would never validate stories from so many of us about how a lot of our kids responded to treatment-especially diet and biomedical which most seemed to regard as taboo for some reason. We have been ridiculed at the mere suggestion of recovery. My requests for blood work and other diagnostic work ups for my son were met with disdain. Why? Why wouldn't you want to comprehensively treat a child with autism? What might you learn about this devastating neurobiological disorder?

When I have spoken publically about our journey I have been criticized as a "celeb junk science peddler" for talking about what I believed triggered my son's autism, offering hope and discussing what has helped improve my boy's cognitive function. Unlike other celebrity autism activists' claims, my son is NOT "cured" or "recovered" (new hurdle is puberty which mixes poorly with autism, fun!)but his progress is noteworthy and in some ways we feel so blessed because tragically not every family has access to treatment and have been given zero hope from their doctors . That breaks my heart. But I have long seen that recovery is possible when all the stars align with a variety of treatments and the means to access them. It was surreal for me to see Dr. Snyderman tout this as some sort of "breaking news" or anomaly.

I will be upfront that I had not been a huge fan of Dr. Snyderman's hard-core rigid stand on vaccine safety. She has basically towed the line well by using her position on the Today Show to declare numerous times that there is no causation or link and basically relaying that all 30 plus shots given under every circumstance to every child is 100% safe all the time. Case closed. Jury dismissed. That is certainly her right to say that but well...that was not our experience. I know for a fact that not all kids can tolerate them because my kids could not. Let's identify them please before any damage is done and discuss alternatives. And if she is right then why then does the vaccine injury court even exist paying millions to families who have the resilience to go up against the machine and claim their child's autism spiral was kicked off by toxic overload of vaccines?

Overall, we just need pediatricians to have better, nuanced and less condescending conversations with parents concerned about vaccine safety because the "I'm a doctor and I'm never wrong" attitude is driving parents away from vaccines and I don't necessarily believe that is a good thing. I am not anti vaccine but I am anti people labeling me as such just because I raise concerns and objections based on my family's experience. After his devastating injury from the MMR shot in 1999 imagine my frustration when I couldn't find a single pediatrician who would work with me with alternative options as I struggled years later with giving the same shot to my two younger boys. They all come from the same gene pool after all and it is not uncommon that several siblings can get autism. They all kept telling me to just give it to them without "studying" the details of what happened to my first boy... That left me scared, alone, hopeless and helpless.

But my absolute favorite thing Dr. Snyderman said this morning were three words: "We are learning". "We are learning"...That was a really nice and encouraging statement. There was something about her tone. Softer. Less defensive. It gave me a slight impression that the deep communication chasm between many disenfranchised autism parents and mainstream doctors is closing a smidge. I know she was only referring to learning about "recovery" but maybe exploring better treatment options is next then ...who knows? An alternate vaccine schedule perhaps and more rigorous study of susceptibility/predisposition to vaccine injury??? Well... a mom can dream! But seriously, if the AAP wants to lower the rising rate of unvaccinated children in schools they need to really listen to and acknowledge the fears of ALL parents not just those who legitimately fear measles outbreaks. The stonewalling is counterproductive trust me. Meanwhile every 20 minutes a child is diagnosed...We definitely need some more Kumbaya moments!

At the Peete house over the last 10 years, we have had remarkable results with diet, enzymes and vitamin B therapy, glutathione replacement treatment, chelation, music therapy and most notably lately hyperbaric oxygen therapy (HBOT). But popular vaccine advocate Dr. Paul Offit called HBOT "quackery" (because there's no science he claims)...what a buzz kill! But we will endure that negative thinking all day long while enjoying our son's resulting explosion in language! (Check this out!)

So I think in general there has been this reluctance to "treat" autism with anything but traditional behavioral therapies. A rigid reluctance to think outside the box and treat the whole child -looking into their gastrointestinal issues for example. So many children on the spectrum are physically ill yet in my experience pediatricians seem so uncomfortable with this fact. I would love to have the chance to ask Dr. Snyderman why this is. But like the "recovery" piece that ran this morning maybe she will come around to report on the high rate of GI issues among kids on the spectrum-old news for us autism parents -but probably only when there is "real science" to back it up. Meantime: tic toc...

In the end though I am very hopeful for the future of these children and babies to come for regardless of our various vantage points and experiences we all share in the tangible dream of eradicating autism once and for all.

 
9 Conducting Autism Research Like It's 1994

Kim Stagliano on HuffingtonPost.com

In 1994, the National Alliance for Autism Research was born. They were dedicated to genetics research for autism. Three years ago, they were absorbed into Autism Speaks. Now, fifteen years after their inception, millions of dollars spent and tens of thousands of children diagnosed with autism later, they appear to have extricated themselves from Autism Speaks and returned to the stage as the Autism Science Foundation.

Their mission? To boldly go back to exactly what they were doing before doctors and researchers and even some uppity folks at Autism Speaks started asking pesky questions about vaccines. (I've heard they have IBM Selectric typewriters on every desk and will serve Jello 1-2-3 in the caf!)

The folks at ASF include Dr. Eric London, the psychiatrist who started NAAR, Alison Singer, former Executive Director of Autism Speaks and Dr. Paul Offit. (He's an infectious disease expert and vaccine patent holder from CHOP who doesn't treat children with autism but knows for a fact what doesn't cause it and how not to treat it. That's a neat trick isn't it?) They have decided and stated that the autism/vaccine issue is 100% closed and so they will not purse that avenue of research. That is certainly their right. Here's part of their mission statement:

Vaccines save lives; they do not cause autism. Numerous studies have failed to show a causal link between vaccines and autism. Vaccine safety research should continue to be conducted by the public health system in order to ensure vaccine safety and maintain confidence in our national vaccine program, but further investment of limited autism research dollars is not warranted at this time. You can read about the "numerous studies" they refer to HERE.

How does a scientific foundation rule out a major (and controversial) hypothesis from the get go? If the American Lung Association had spun off a new group headed up by those with a strong allegiance to Philip Morris and called themselves, INCS ("It's Not Cigs Stupid!") would anyone take them seriously outside of those with a financial interest in cigarettes?

Meanwhile, fast forward to the year 2009, a ballsy researcher named Jones in the UK is ruffling feathers by suggesting that genetics research overall has not borne out the cures as hoped. (Don't we know it?) Writing in The Daily Telegraph today, the academic and author called for a complete overhaul of the "scattergun" approach to genetic research, which is backed by millions of pounds in funding by governments and medical charities such as the Wellcome Trust.

Prof Jones said he was one of a number of "renegade" scientists who were beginning to question the research. "It's not done to kill the goose that lays the golden eggs, nor to bite the hand that feeds you -- nor, in my own profession, to criticise the research program of the Wellcome Trust, an enormously rich charity that paid much of the bill to read the message written in human DNA.

"Not done, perhaps: but a pack of renegade biologists has turned on that source of nutrition to claim that what it is doing is welcome, but plain wrong."

"We thought it [genetic research] was going to change our lives but that has turned out to be a false dawn." (HERE)

A "False dawn." Sounds a bit like Dr. Offit's book Autism's False Prophets got tangled up with an Autism Mom vampire, doesn't it? No matter. The door is not closed to vaccination injury and how it relates to autism.

One of the most trusted doctors in America, and former head of the National Institutes of Health, Dr. Bernadine Healy, has been sounding the alarm for over a year now. You may have seen her on Larry King Live a few weeks ago where she questioned giving Hepatitis B vaccine to newborns, for instance. Or on CBS last year. HuffPo blogger David Kirby wrote about the CBS interview last spring, (HERE.)

Dr. Healy wrote in US News earlier this month:

The debate rolls on -- even about research. The Institute of Medicine in its last report on vaccines and autism in 2004 said that more research on the vaccine question is counterproductive: Finding a susceptibility to this risk in some infants would call into question the universal vaccination strategy that is a bedrock of immunization programs and could lead to widespread rejection of vaccines. The IOM concluded that efforts to find a link between vaccines and autism "must be balanced against the broader benefit of the current vaccine program for all children."
Wow. Medicine has moved ahead only because doctors, researchers, and yes, families, have openly challenged even the most sacred medical dogma. At the risk of incurring the wrath of some of my dearest colleagues, I say thank goodness for the vaccine court. (HERE)

The debate certainly rolls on -- despite NBC's Dr. Nancy Snyderman sniping at Matt Lauer this past Spring, "There is no controversy!" as she shilled her book. Jim Carrey wrote about vaccines and autism and got over 3900 comments (and counting) right here at HuffPo, see: "The Judgement on Vaccines and Autism is In?"

The Autism Science Foundation with it's clear cut "we promise not to look at vaccines" mission will reel in research dollars from the very institutions who have the most to lose if vaccination safety is found to be lacking. I assume Pharma is gleefully writing funding checks right now.

I'm not sure ASF has installed their Trimline phones yet. When they do, will someone please ring them up and tell them that OJ Simpson is trying to reach them. He says he's available to help them look for the cause of autism.

 
10 Jenny McCarthy's Autism Crusade: Healing, Hope... And Controversy
Dr. Patricia Fitzgerald on HuffingtonPost.com

Every 20 minutes, a child is diagnosed with autism. In a study of select populations around the United States, the Centers for Disease Control (CDC) found that one in 150 children has the condition. According to the Autism Society of America, this is the fastest growing developmental disability with a 10-17% annual growth rate.

April is annual Autism Awareness Month. The actual cause of autism and a definitive treatment are still being researched and are under debate.

Jenny McCarthy and thousands of concerned parents, doctors, and health advocates aren't just waiting for an official cure. They're finding answers, and getting results.

Jenny, an actress and a former Playboy model, continues her crusade against autism with her new book, Healing and Preventing Autism, which she co-authored with Jerry Kartzinel, MD, a pediatrician who has successfully treated hundreds of patients with autism. Dr. Kartzinel is also the parent of a son with autism. Jenny has publicly shared her struggles with finding her son, Evan, effective treatment, and now reports that he has officially recovered. Evan lost his autism diagnosis per the State of California.

On Larry King Live's blog, Generation Rescue (an autism advocacy group) Founder J. B. Handley proclaims: "Jenny McCarthy's son Evan no longer has autism. This is a very hard concept for most people to grasp, because the popular understanding of autism is that it's lifelong. Quietly, a revolution of tens of thousands of parents around the world are standing firmly behind Jenny and using the same treatments to heal their children that she used to heal Evan. Not a day goes by where I don't hear a story from a parent of their child's dramatic improvement or complete recovery from autism using what we call 'biomedical intervention.'"

What Is Autism?

According to the National Institutes of Health (NIH), "autism ... is the most common condition in a group of developmental disorders known as the autism spectrum disorders (ASDs). Autism is characterized by impaired social interaction, problems with verbal and nonverbal communication, and unusual, repetitive, or severely limited activities and interests."

What Causes Autism?

The cause is not known, but experts say that autism is most likely caused by a combination of genetic vulnerability, nutritional deficiencies, and environmental factors.

Healing and Hope

In their book, Healing and Preventing Autism, Jenny and Dr. Kartzinel share their beliefs that the best way to tackle the factors contributing to autism is through a biomedical approach.

Biomedical intervention looks at nutrition, detoxification, and removal of interfering factors, such as yeast, food allergies, viruses, bacteria, and heavy metals. Jenny and Dr. Kartzinel admit that biomedical interventions do not help everyone, but thousands of children have improved with this type of therapy.

An important focus of this approach involves supporting the body's innate healing response with healthy food and nutritional supplements.

Their book asserts that autism is not rooted in one cause, and therefore successful treatment is often multifaceted.

Key Components of the Biomedical Treatment:

First of all, clean up the diet. A gluten-free, casein-free diet is one that has helped thousands of kids. In addition, eat as organic as possible, and avoid artificial colorings and flavorings, sugar, preservatives, and artificial sweeteners.

Consider nutritional supplementation. Dr. Kartzinel believes autistic kids have major nutrient deficiencies. The book highlights the supplements he has found most helpful for his patients.

Reduce or eliminate environmental toxins. Advocates of the biomedical approach believe that children with autism are especially sensitive to the toxic elements of most household cleaners, paints, pesticides, etc.

Test and treat for other contributing factors, such as food allergies, yeast infections, heavy metals, etc., that the child's doctor might suspect are involved. Treatment must be supervised by a doctor. Doctors who offer the biomedical approach, known as "DAN! (Defeat Autism Now!) doctors," can be found at the Autism Research Institutes's website.

The Autism Research Institute has collected data from 26,000 parents on the effects of biomedical treatments. You can view the percentages of those parents who observed improvement in their children with such approaches as the gluten-free, casein-free diet, removing sugar from the diet, supplementing with cod liver oil, etc. Elsewhere on the site, parents share stories of their children's recovery.

The Biggest Controversy

When it comes to healing autism or any chronic condition, improving the diet and adding nutritional supplements are interventions that are rapidly gaining mainstream acceptance.

However, the most controversial area that Jenny and Dr. Kartzinel discuss in their book is that of vaccinations. The two have brought to light what they consider to be an excessive use of vaccines in the US, and therefore they have often been accused of being "anti-vaccine."

Here's how Jenny explains her view of this hot-button issue at the beginning of the chapter on vaccines: "Despite what anybody thinks, I'm still not against vaccines ... if I were you, I would educate myself on each shot and what it protects against, along with the possible side effects." The rest of the chapter is a conversation during which Jenny and Dr. Kartzinel discuss vaccine pros and cons, side effects, an alternative shot schedule, and the ingredients in vaccines. Resources for further research are also provided.

The autism-vaccine link is being studied because there are actual concerns that warrant these studies. Some studies support the use of certain vaccines, while other studies do not. Often there are conflicts of interest within studies. It can make anybody's head spin trying to sort through these studies.

Some research has denied the autism-vaccine link, while some has supported such a connection. There are two cases recently highlighted in the news related to children who received compensation because of a vaccination connection to autism spectrum disorder.

A Deeper Look

The autism-vaccine debate will most likely continue for a long time. Meanwhile parents are confused and often feel desperate to know how to make the right choices for their children's health and safety.

Here are some web links for further exploration of the autism and vaccine issues:

David Kirby, author of Evidence of Harm

www.evidenceofharm.com; also see www.huffingtonpost.com/david-kirby

FourteenStudies.org, which looks at vaccine studies and presents the studies' limitations and conflicts of interest

Jay Gordon, MD, an author and pediatrician with over 30 years of experience

www.Drjaygordon.com; also see www.huffingtonpost.com/jay-gordon

Robert Sears, MD, another author and pediatrician

Autism Awareness, Prevention, Support

I am not a pediatrician. However, I have seen numerous patients with autism spectrum disorder, who were often referred to me by pediatricians for help with food allergies and nutrition. I have witnessed the improvement in many of these children after changes in diet along with nutritional supplementation. Many of my colleagues have reported similar results to me.

I am writing this piece to encourage parents, loved ones of children, and those contemplating having children to be as informed as possible. It is important to keep up to date with the latest research and information.

There is a lot of support available. Generationrescue.org is a great resource site, with research, recommended doctors, Rescue Angels (parents who help other parents), and testimonials (listed according to the child's age, from 2 years through 10). An inspiring documentary by Generation Rescue can be found at autismyesterday.com.

Autism awareness is not just about recovery from the condition. It is also about prevention. Healing and Preventing Autism's chapter on autism prevention offers women preparing for pregnancy advice on how to remove toxins from their body and their environment, as well as how to maximize their nutrient intake.

Recovery and prevention. That's the message of Jenny McCarthy, Dr. Kartzinel, and the thousands of advocates who share their stories and support for families who are faced with the challenges of getting proper care for their children with these special needs.

Throughout Healing and Preventing Autism, Jenny passionately reminds us that she and her dedicated army of advocates for autism are in this for the long haul:

"Thousands of parents, like me, have learned so much and the only reason we won't shut up is to teach YOU, so you don't have to walk in our shoes. Dr. Jerry and I want to arm parents with all the tools and information necessary to have the healthiest baby you can. The next generation of kids is counting on it!"

 
11 Mainstreaming kids with autism

Today Show

April 9: As TODAY’s "Class of 2020" series continues to follow a group of students from kindergarten through high school, the focus turns to 6-year-old Kieran, one of the 24,000 children diagnosed with autism every year.

Watch video

Read our article about inclusion.

 
12 Federal study opens new avenues for mercury pollution research
nytimes.com

Federal study opens new avenues for mercury pollution research

By SARA GOODMAN, Greenwire

The U.S. Geological Survey has taken a big step toward answering long-standing questions about mercury in the oceans, with the release of a landmark study pointing to the role of human activities in releasing the contaminant and changing the makeup of the North Pacific.

The study opened the door to several key remaining questions, including whether different oceans absorb mercury differently and whether more of the metal in the water leads to increased levels of methylmercury -- mercury's highly toxic form -- in marine life.

The USGS study tested a long-held hypothesis that methylmercury originates 30,000 feet below the sea surface. The problem with that theory is that mercury probably would not be affecting seafood because harvested fish don't swim anywhere near those depths, USGS scientist and study co-author David Krabbenhoft said.

So Krabbenhoft and his team tried to determine if they could find methylmercury sources in the open ocean, away from continental margins but not at the bottom of the sea. They sampled Pacific Ocean water from 16 sites between Honolulu and Kodiak, Alaska. And they also built a computer simulation linking atmospheric mercury emissions, transport and deposition of mercury with an ocean circulation model.

Their sampling showed 2006 mercury levels were approximately 30 percent greater than mid-1990s levels.

When they first saw the increase, the researchers hypothesized that mercury emitted on land by the combustion of fossil fuels and wastes falls over the ocean. But that theory did not hold up to modeling, because the airborne emissions did not travel far enough away to fall over the middle Pacific, Krabbenhoft said.

The new theory focuses on algae. Those microscopic plants bloom in sunlit waters near the surface, die, then "rain" to greater water depths. The algae there are decomposed by bacteria and produce methylmercury. Methylated waters are then carried into the open ocean.

If that theory is true, it means human activities are in fact changing mercury concentrations in the ocean. And that, in turn, could be affecting fish, researchers say.

"Temporal trends in concentrations in the ocean could really substantially affect fish harvests from the area," said Elsie Sunderland, a Harvard University professor and a member of the USGS research team. "A lot of commercially important fish catches come from the region."

The scientists believe that mercury deposited along the Asian coast was then carried to the middle of the Pacific Ocean by currents over about three years.

"There has been a relatively recent -- within the last 10 to 15 years -- dramatic increase in mercury emissions from Asian countries that could -- and we believe does -- result in significant increases in mercury concentrations in ocean waters near the western Pacific," Krabbenhoft said in an interview.

This time frame is one of the most important findings for Canadian researcher Vincent St. Louis, a professor at the University of Alberta who was not involved with the study, because it suggests that human activities are actually capable of changing the makeup of a massive body of water in a short time.

"It's important that in huge bodies of water, they were able to detect that change," St. Louis said.

Based on computer models, the scientists predict an additional 50 percent increase in mercury in the Pacific Ocean by 2050 if emission rates continue as projected.

'Study deserves hard scrutiny'

Mary Anne Hansan, a spokeswoman for the National Fisheries Institute, said in an e-mail that it is too soon to begin drawing conclusions about mercury in fish from the study's findings.

"This study deserves hard scrutiny, especially because existing, peer-reviewed research shows no mercury increase in oceangoing fish over the last 30 years," Hansan said. "What's more, the authors of the study concede that they did not test levels of mercury absorption in fish, which renders any conclusions or forecasts about seafood incomplete and irresponsible."

The scientists agree it is too soon to make a direct link between their findings of increased methylmercury in the ocean and levels found in fish tissue. An important follow-up, they say, will try to determine whether or not there is an observed link between methylmercury levels in the ocean and in the fish that swim there.

What is most important now, Krabbenhoft said, is that the study suggests for the first time a probable link between methylmercury in the open ocean and human activity.

"We actually have a methylmercury source now, and we have a direct link to recent emissions," he said.

Comparing water bodies

Scientists also have to learn about the role nutrients within a specific ocean body play on methylmercury production. The North Pacific, where the USGS research was conducted, is relatively nutrient-rich, Krabbenhoft said. By contrast, the Southern Ocean -- between the southern tip of Africa and Australia -- is nutrient-poor.

So the team's oceanographer has for the past two months been cruising the Southern Ocean, collecting data samples for analysis.

The reigning hypothesis is that the Southern Ocean will not have the necessary nutrients to support activities such as algae production, Krabbenhoft said, which could influence which fish contain the most amounts of methylmercury.

"The idea that mercury -- and methylmercury concentrations in particular -- could be different among ocean bodies is brand-new and needs to be explored to see if we can relate fish mercury concentrations seen in the Pacific, for example, to those seen in more nutrient-poor waters," he said.

There are also plans to collect data from the Indian Ocean, which is relatively nutrient-rich, where the scientists expect to see similar results to those from the North Pacific.

Lakes and other fresh water bodies are more nutrient-rich than the oceans. It is also easier to gather data, so scientists have known for some time that mercury deposited from the atmosphere to freshwater ecosystems can be transformed into methylmercury. St. Louis, the University of Alberta scientist, said he believes the conversion of mercury to methylmercury is probably different in freshwater than in ocean water, which is another research avenue that should be explored.

Links to fish

Those additional findings could help shed light on which marine fish are relatively mercury-free and which are most susceptible to increased human emissions, the researchers note.

Uncovering the answers is compounded by the difficulties of gathering data in the open ocean and by the complex migration patterns of some fish, which can cross multiple water bodies.

At Harvard, Sunderland is working with a group to develop computer modeling to assess anthropogenic mercury emissions to concentrations that are naturally occurring. Her group is building an ocean simulation with atmospheric models and incorporating methylmercury levels to try to understand how changes in pollution will affect mercury levels globally.

Scientists say such research is critical because ocean fish and shellfish account for more than 90 percent of human methylmercury exposure in the United States. Tuna harvested in the Pacific Ocean accounts for 40 percent of that total exposure, according to a 2007 study by Harvard's Sunderland.

What's next for Congress?

On Capitol Hill, some lawmakers are hoping the USGS study and others can generate momentum for curbing industrial air pollution. Senate Clean Air Subcommittee Chairman Tom Carper (D-Del.) hopes to have a hearing next month addressing sulfur, nitrogen and mercury, according to a spokeswoman.

The benefit of moving on those three pollutants is that technology currently exists to curb them, Krabbenhoft said.

"We can and have already developed the technological capabilities that allow us to essentially trap a great deal of mercury," Krabbenhoft said. "The distinct difference between greenhouse gas releases is that we already have the technology in place to get greater than 90 percent of mercury contained."

 
13 Neighbors, parents spar over autistic boy
www.upi.com

A San Marcos, Calif., couple say three neighbors have responded with unreasonable fear toward their 4-year-old autistic son.

Gary and Marla Trussle, say they believe the three are discriminating against the boy, Spencer, because he has autism, KGTV in San Diego reported Tuesday.

The neighbors said they feared Spencer "might come out with a firearm at any time," the broadcaster said.

"I thought they had lost their minds," Marla Trussle said.

The three neighbors, identified as Sarah Fisher, Danielle Harway and Kelly Plaster, went to court seeking to have the Trussle family, including Spencer, restricted to their own home and driveway, but a judge threw out the case, KGTV said.

Fisher reported the Trussles to state Child Protective Services and called Gary Trussle's employer, Continental Airlines, where he's a captain, and made a 911 call, saying he couldn't control his young children, the station said. But, it said, San Diego sheriff's officials declined to write a report and CPS dropped the case as unsubstantiated.

KGTV said a reporter approached the three neighbors, but that Plaster and Harway went into a house and Fisher said "No, thank you" when asked if she wanted to comment.

 
14 New DDS Autism Report Released
From Rick Rollens:

Over a year and a half ago, I asked DDS to update their Autism Report to cover the growth in autism in the Regional Center system over the 20 year period from 1987-2007. They finally released that Report today. It is loaded with very important and telling data about the autism epidemic in California. Below is the link to the Report.

http://www.dds.ca.gov/Autism/docs/AutismReport_2007.pdf

 
15 Autism in California increases twelvefold
By Sandy Kleffman
Contra Costa Times

California saw a twelvefold increase during the past two decades in the number of autistic people who are receiving services through regional centers, a new state study reveals.

The dramatic rise in autism has broad implications for California families, taxpayers and social service agencies.

"This is a shocking recognition of the challenges we face, today and into the future," said Rick Rollens, the father of an autistic child and a co-founder of the Medical Investigation of Neurological Disorders Institute at UC Davis.

From 1987 to 2007, the number of children and adults with autism served by regional centers rose from 2,701 to 34,656, notes a study released this week by the state Department of Developmental Services.

That is a nearly 1,200 percent increase. By contrast, the state's general population grew by 27 percent during that time frame.

Other disabilities saw much smaller growth rates. Regional center clients with mental retardation increased by 95 percent, cerebral palsy by 73 percent, and epilepsy by 66 percent.

People who have autism now outnumber those with cerebral palsy in the state, and they will soon surpass those with epilepsy.

Autism is a severe developmental disorder marked by communication difficulties, an adherence to routines and a lack of interest in socializing with others.

No one knows what causes the disorder, but many experts now believe one or more environmental factors trigger autism in genetically susceptible children.

The latest findings highlight the urgency in discovering a cause, Rollens said. He added that it is ironic that the report is being released shortly before the regional center system faces a $100 million budget cut beginning in July.

This is the third major autism study produced by the state. The numbers understate the amount of autism in California, said Julia Mullen, deputy director of the community services and support division of the state Department of Developmental Services.

The statistics include only people who are receiving services through regional centers, which represents about 75 to 80 percent of the autistic population, the study estimates.

The numbers also include only those with classic autism. For the most part, people with other autistic spectrum disorders, including Asperger's syndrome and Rett's disorder, are excluded from the statistics.

In a finding with important ramifications for the future, the study notes that within the next five years, more than 4,000 teenagers who have autism will reach adulthood. They will be added to the 6,000 adults already in the regional center system.

By 2018, the study estimates, the number of adults with autism will exceed 19,000. It is crucial, Rollens said, that the state develop the infrastructure to serve these families, despite the tight financial times.

Mullen said her agency has developed guidelines on diagnosing autism and effective interventions. It also has placed autism specialists in each of the 21 regional centers to work with the community on approaches and programs, she said.

The study reveals that the ratio of males to females who have autism continues to increase. Today, nearly five boys have the disorder for every one girl.

The percentage of people who have both autism and mental retardation has dropped significantly, a trend that may provide clues for those trying to solve the autism puzzle.

Rollens noted that the state does not have experience in dealing with thousands of adults who have autism, but will need to prepare for what is often a lifelong need for care.

"The impact of what we see in these numbers is sobering," he said.

 
16 The Swine Flu Vaccine from the 70s
Watch video: http://www.10news.com/video/19317163/index.html
 
17 From Jay Gordon, MD FAAP: Swine Flu/Tamiflu
Just wash your hands. Every year, hundreds of viruses pass through the pediatric and adult community. Many of the bugs are disruptive and keep kids out of school and adults away from work. Some of the viruses have unique signs and symptoms, but most just cause amorphous aches, sneezing, coughing or intestinal upset.

Influenza viruses, especially new ones, trigger more news stories and can be made to seem much more frightening and dangerous than they really are. Government agencies and media don't supply statistical context and make it sound like you've got a "fifty-fifty" chance of contracting this new virus. They then make it sound like a lot of people who get this influenza end up in the hospital and may die. Statistically, nothing could be further from the truth: The chance that the new virus is really dangerous is small. The chance that you'll get it is much, much smaller, and the possibility that you or a family member will be harmed by the virus is so slim that the news should be on page twenty, not page one.

Swine Flu is a virus for which there is no vaccine, no threat to your family and there are undoubtedly tens of thousands of harmless undiagnosed cases throughout the world. The news stories are probably taking a hundred questionable respiratory deaths in Mexico and guessing.

There actually is a very, very small chance that this virus could cause severe illness and whenever this occurs hospitalization and even fatalities are reported. The likelihood of a pandemic is miniscule, but newspapers, governments agencies and the manufacturers of pharmaceuticals do their best work and make their biggest sales when people are scared.

Tamiflu is recommended for treatment and prevention of this influenza virus. The company which gets the drug's royalties (Gilead) has as a major stockholder--previously Chairman--one Donald Rumsfeld.

Local pharmacies are already running low on Tamiflu.

Connect these dots.

uk.reuters.com/article/governmentFilingsNews/idUKN2445216420090424

www.snopes.com/politics/medical/tamiflu.asp

money.cnn.com/2005/10/31/news/newsmakers/fortune_rumsfeld

www.reuters.com/article/domesticNews/idUSTRE53O17O20090425

www.nasdaq.com/aspx/stock-market-news-story.aspx?storyid=200904251215dowjonesdjonline000319&title=who-says-initial-findings-show-swine-flu-responds-to-tamiflu

The usual boring admonitions apply: wash your hands, stay well-rested and well-hydrated. You do not need to buy Tamiflu. It is an effective antiviral drug but has possible side effects.

health.howstuffworks.com/health-illness/treatment/medicine/medications/tamiflu-psych.htm

As far as our office prescribing Tamiflu, we would rather not, but we will if you insist. I promise you that I personally am purchasing none for my family and would recommend the same to you.

Best,

Jay
JNG, MD FAAP

www.drjaygordon.com

 
18 Penn State Study Results: The GF/CF Dietary Treatment for Children with ASDs
Dear GF/CF Diet & ASD Study Participants,
 
Thank you very much for participating in my Penn State Senior Honors Thesis study regarding the gluten-free, casein-free dietary treatment for children with autism spectrum disorders.  Your time and effort are greatly appreciated, and I cannot thank you enough!
 
I am extremely excited to share the study results with you. Briefly, your data demonstrated significant findings to support each of my hypotheses regarding the effectiveness of the gluten-free, casein-free diet as it relates to diet implementation, diet trial length, child's family history of autoimmune disease, child's (food) allergy diagnoses, child's gastrointestinal symptoms, and child's autoimmune disease diagnoses.  Importantly, this is the first study of its kind to reveal these findings, and you should be very proud you were a part of it! Please see the pdf attachment for a complete summary of the study's main findings.  
 
If you have any questions, feel free to contact me (Christine) at autismdietsurvey@psu.edu 
Once again, thank you so much for participating in this study!  Thanks to you, the entire autism spectrum disorder community will benefit from this study's findings.
 
Sincerely,
Christine Pennesi
Biobehavioral Health Studies Laboratory
Department of Biobehavioral Health
The Pennsylvania State University
 
19 In Defense of the "Autism Diet"
By Holly Bortfeld | TACA

The GFCFSF diet, known as the “Autism Diet” has been around for many years and has helped many people with ASD improve their lives, health and functioning. The following are my reasons to defend the diet.

The diet has proof to back it up - Research by Dr. Harumi Jyonouchi shows that 91% of people with ASD who were put on a strict GFCFSF diet improved. Jyonouchi’s papers say that ASD children have an aberrant immune response to the dietary proteins found in gluten, casein and soy. This peer-reviewed research merely backs up what parents have been saying for more than 10 years. Countless parents report that the diet is dramatically beneficial for their child. The most common comment we hear from parents is that their child “came out of the fog” when we started the diet. Many parents report that their children began to talk or increased their speech with the diet as well. Although this is anecdotal evidence, the preponderance of is it massive and consistent, and deserves a trial by families.

While we would like to have more double-blind studies to back up the diet, the truth is that it’s a very hard thing to study and make sure compliance was 100% in both groups without putting each in a controlled environment. Most parents would not allow this. The few recent studies that have been done were designed to fail as they didn’t run for the full 4 month trial period (most just a mere few weeks), although parents report that 4 months is the turning point. Additionally, those trials still allowed soy and unlimited high-sugar foods.

Diet improves health – ASD children usually self-limit their diet to a handful of things – usually all gluten and casein, and many times light-colored foods only. The typical ASD child can be down to a menu of chicken nuggets, French fries or chips, bananas, milk and yogurt. Parents report that their children “refuse all other foods” leading to poor nutrition. The sensory defensiveness that many ASD kids exhibit is vastly heightened before the diet and texture becomes a roadblock to healthy eating as well. Once they are on the diet however, they expand their food choices to include more healthy choices, thus improving their nutrition.

Diet improves the symptoms of autism – Common problems in ASD such as sleep issues, tantrums, challenging behaviors including self-injury and safety awareness are commonly reduced when the diet is implemented. Before the diet, my son like most ASD children rarely slept through the night. A child, not to mention parents, functioning on 2-3 hours of sleep chronically, sets them up for a cornucopia of dangers. Sleep deprivation is linked to immune system problems and increased behavioral issues. For parents this can mean car accidents, missed work and increased illness, all causing a cyclical problem in the home for everyone. Most parents report a reduction in behaviors, especially self-injury, elopement, dangerous climbing, recurrent ear infections, rashes and other medical conditions once their children are on the diet. According to the Autism Research Institute’s Parent Ratings of Biomedical Interventions, diet is consistently in the top interventions for efficacy.

Diet enhances therapies – Before the diet my son had a 1:1 in-home 40-hour-a-week program. The problem was that he didn’t seem to know they were there. Once we implemented the diet, it was as if he woke up and said “Oh, you want me to do this? Sure, why didn’t you say so?”. Once he was fully on the diet, he was finally able to attend to the therapists at both his in-home program and his in-clinic OT and speech therapists. Until that happened, I felt like we were wasting our money on the therapies. Our behavioralist, who had been working with ASD kids for 20 years at that point had set out a “realistic” time table the average child at my son’s functioning level would take to accomplish the goals we set for him. Once the diet was on board, however, my son flew through the goals and we were rewriting new ones monthly instead of semi-annually, which is what all of the professionals normally did. After a few years of witnessing children who were on the diet for themselves, all of the autism specialists we visited no longer accepted patients who weren’t on the diet. Their reasoning was that if they only had a limited amount of time to see children, they would rather spend 2 years with a child who will progress 4 years worth of development, than a child who will progress 4 months worth of development in the same time period.

Diet can negate the need for psychotropic medications – We have heard hundreds, if not thousands, of parents over the last decade tell the same story: “the doctor/school/therapist suggested medication to control the behaviors, but we opted for diet and they stopped suggesting medication since my son has responded so well to a simple change of food!”. While this is anecdotal, it is a proven issue when it comes to gluten-induced seizures. I have had many doctors and parents tell me about children who had seizures and the removal of gluten stopped them, thus making that child’s seizure medication unnecessary.

Maybe the question we should be asking when it comes to diet and autism is “Why not?”

The most common reason I hear against the diet is because they want their kids to eat the same foods as their peers sitting next to them in the school cafeteria. The problem with that is that school food is typically poor quality, low nutrition, high fat, sugar- and corn-syrup filled junk food that plays a part in our national obesity epidemic. As parents, I would hope that we would strive for better, not just the same substandard food the public schools serve.

Another myth worth debunking is that the diet is too expensive. The diet is only as expensive as you make it. Any diet, even the traditional American wheat and milk-based diet, is expensive if you buy a lot of pre-made foods. TACA has a great article on doing the diet on a budget and our “GFCFSF Diet on Food Stamps” article will be out soon.

 
20 Smackdown! EPA, FDA and Mercury in Fish

Newsweek.com

Sharon Begley

It isn’t every day that one federal agency says the work of another has such “serious scientific flaws” that the work is “not a product [we] should endorse as it does not reach the level of scientific rigor.” Nor is it every day that federal agency #1 (as we’ll call it) says that while federal agency #2 may have tried to get its act together in response to earlier criticism, the work is “essentially unchanged, and . . . [still] scientifically flawed.”

Yet this is how the U.S. Environmental Protection Agency characterizes an analysis by the U.S. Food and Drug Administration. The comments from EPA are in response to an analysis by FDA, issued in the waning days of the Bush administration, that lays the groundwork for a change in federal policy which currently warns people to avoid high-mercury fish and eat lots of the low-mercury kind (a list of what’s high and what’s low can be found here). FDA's analysis would support telling people to eat all the high-mercury fish they want. FDA hadreceived 248 responses by the time the comment period closed earlier this week. (My thanks to the Environmental Working Group, whose own comments on the FDA proposal pointed me to and quote from the EPA response. You can find EWG’s letter here; the docket is a nuisance to navigate around, but if you go to that page and click on the pdf icon, you’ll get EWG’s comment. EPA’s is here; click on the Word icon.)

Here's the backstory. In January, FDA published what’s called a draft assessment of the benefits and risks of eating fish. It asked for public comment. While it’s hard to summarize the technically dense, 350-page report, FDA’s conclusions seem to be that mercury risks are very small, and that telling women to eat more fish has greater public health benefits than telling them to eat low-mercury fish. (The focus is on women because fetuses are at the highest risk from mercury. Mercury is a neurotoxin and the developing brains of fetuses and kids are most vulnerable to its poisonous effects.) Next step (though FDA doesn't say this): stop telling people to limit their consumption of high-mercury fish.

Bizarrely, FDA has structured the choice as “either/or:” Eat more fish, or eat low-mercury fish. For reasons I can’t imagine, FDA left out of its analysis the scenario that combines the two: eat more fish, but only low-mercury fish. In every scenario it ran, fish benefits and mercury damage largely offset each other. Obviously, the eat-more-low-mercury fish approach would have greater benefits than doing one but not the other—as researchers (and FDA) have been saying for years. Why would you want to wipe out the brain-healthy effects of fish by having a little neurotoxin on the side?

Predictably, the fishing industry and professional mercury risk-deniers have lauded the FDA analysis. Industry comments describe it as “a comprehensive analysis supporting consumption of seafood.” David Martosko, research director at the Center for Consumer Freedom, wrote in his comments that FDA’s analysis shows that the current FDA/EPA advisory about limiting how much high-mercury fish you eat “has been sending consumers the wrong message.” He urges that the advisory be withdrawn or revised: just tell women to eat more fish, and stop telling them to consider the mercury levels in different fish.

Research scientists and EPA, however, say FDA’s analysis is junk science. For one thing, FDA’s estimate of mercury risk is based on a 22-year-old study in Iraq that observed the age when kids first talk—but the children’s actual ages were unknown. FDA “adjusted” that risk estimate with data from the Seychelles Islands, where the harmful effects of mercury were obscured by the benefits of eating fish. A report from a committee of the National Academy of Sciences concluded in 2000 that the Iraq and Seychelles studies are not the best evidence, and urged the government to use data from a study in the Faeroe Islands. FDA didn’t.

Which is one reason why EPA was so scathing in its comments on its sister-agency’s analysis. It takes FDA to task for dozens of errors and faulty assumptions. One example: FDA relied on research on the neurodevelopmental risks mercury poses which “had been completely abandoned by the scientific community as a basis for risk assessment for more than a decade,” says EPA. EPA’s comments go on to note many other “questionable, faulty or unfounded choices with the effect of boosting benefits or reducing risks from seafood consumption above what is justified scientifically,” EWG says in its comments. EPA concludes that “a fish consumption advisory strategy based on the design of the FDA draft analysis would be highly inconsistent with what is generally considered to be proper public health practice.”

In its soon-to-be 100 days in office (April 29), the Obama administration has begun to clear out the detritus of the junk science and politicized science it inherited from the Bush years. It will be interesting to see whether the idea that it’s fine to eat fish containing high levels of a neurotoxic compound will survive the culling or be recognized for the bad science it is.

One final note: as the battle over what information the public should be getting about fish and mercury rages, the tuna industry might need to watch its flank. In a little-noticed decision this Monday, the U.S. Supreme Court declined to hear an appeal from Tri-Union Seafoods, which makes Chicken-of-the-Sea tuna. Tri-Union sought to block a lawsuit by a New Jersey woman who got methylmercury poisoning from eating its product. The company argued that since the FDA considers canned tuna safe enough to be sold without a warning label, individuals can’t sue over alleged injuries. The Court’s decision lets stand a ruling by an appeals court that the lawsuit can proceed. The plaintiff, Deborah Fellner, ate almost noting but canned tuna for five years, and got a classic case of mercury poisoning, according to her lawsuit. She argues that the company was negligent in failing to warn her of its tuna's high mercury content.

 
21 The Judgment on Vaccines Is In???
Jim Carrey on HuffingtonPost.com

Jim CarreyActor
Posted April 22, 2009 | 10:02 AM (EST)

Recently, I was amazed to hear a commentary by CNN's Campbell Brown on the controversial vaccine issue. After a ruling by the 'special vaccine court' saying the Measles, Mumps, Rubella shot wasn't found to be responsible for the plaintiffs' autism, she and others in the media began making assertions that the judgment was in, and vaccines had been proven safe. No one would be more relieved than Jenny and I if that were true. But with all due respect to Ms. Brown, a ruling against causation in three cases out of more than 5000 hardly proves that other children won't be adversely affected by the MMR, let alone that all vaccines are safe. This is a huge leap of logic by anyone's standards. Not everyone gets cancer from smoking, but cigarettes do cause cancer. After 100 years and many rulings in favor of the tobacco companies, we finally figured that out.

The truth is that no one without a vested interest in the profitability of vaccines has studied all 36 of them in depth. There are more than 100 vaccines in development, and no tests for cumulative effect or vaccine interaction of all 36 vaccines in the current schedule have ever been done. If I'm mistaken, I challenge those who are making such grand pronouncements about vaccine safety to produce those studies.

If we are to believe that the ruling of the 'vaccine court' in these cases mean that all vaccines are safe, then we must also consider the rulings of that same court in the Hannah Polling and Bailey Banks cases, which ruled vaccines were the cause of autism and therefore assume that all vaccines are unsafe. Clearly both are irresponsible assumptions, and neither option is prudent.

In this growing crisis, we cannot afford to blindly trumpet the agenda of the CDC, the American Academy of Pediatrics (AAP) or vaccine makers. Now more than ever, we must resist the urge to close this book before it's been written. The anecdotal evidence of millions of parents who've seen their totally normal kids regress into sickness and mental isolation after a trip to the pediatrician's office must be seriously considered. The legitimate concern they and many in the scientific community have that environmental toxins, including those found in vaccines, may be causing autism and other disorders (Aspergers, ADD, ADHD), cannot be dissuaded by a show of sympathy and a friendly invitation to look for the 'real' cause of autism anywhere but within the lucrative vaccine program.

With vaccines being the fastest growing division of the pharmaceutical industry, isn't it possible that profits may play a part in the decision-making? That the vaccine program is becoming more of a profit engine than a means of prevention? In a world left reeling from the catastrophic effects of greed, mismanagement and corporate insensitivity, is it so absurd for us to wonder why American children are being given twice as many vaccines on average, compared to the top 30 first world countries?

Paul Offit, the vaccine advocate and profiteer, who helped invent a Rotavirus vaccine is said to have paved the way for his own multi-million dollar windfall while serving on the very council that eventually voted his Rotavirus vaccine onto our children's schedule. On August 21, 2000 a congressional investigation's report titled, "Conflicts in Vaccine Policy," stated:

It has become clear over the course of this investigation that the VRBPAC and the ACIP [the two main advisory boards that determine the vaccine schedule] are dominated by individuals with close working relationships with the vaccine producers. This was never the intent of the Federal Advisory Committee Act, which requires that a diversity of views be represented on advisory committees.
Isn't that enough to raise questions about the process of choosing the vaccine schedule?

With many states like Minnesota now reporting the number at 1 in 80 children affected with autism, can we afford to trust those who serve two masters or their logic that tells us "one size fits all" when it comes to vaccines? Can we afford to ignore vaccines as a possible cause of these rising numbers when they are one of the fastest growing elements in our children's environment? With all the doubt that's left hanging on this topic, how can anyone in the media or medical profession, boldly demand that all parents march out and give their kids 36 of these shots, six at a time in dosage levels equal to that given a 200 pound man? This is a bias of the most dangerous kind.

I've also heard it said that no evidence of a link between vaccines and autism has ever been found. That statement is only true for the CDC, the AAP and the vaccine makers who've been ignoring mountains of scientific information and testimony. There's no evidence of the Lincoln Memorial if you look the other way and refuse to turn around. But if you care to look, it's really quite impressive. For a sample of vaccine injury evidence go to www.generationrescue.org/lincolnmemorial.html.

We have never argued that people shouldn't be immunized for the most serious threats including measles and polio, but surely there's a limit as to how many viruses and toxins can be introduced into the body of a small child. Veterinarians found out years ago that in many cases they were over-immunizing our pets, a syndrome they call Vaccinosis. It overwhelmed the immune system of the animals, causing myriad physical and neurological disorders. Sound familiar? If you can over-immunize a dog, is it so far out to assume that you can over-immunize a child? These forward thinking vets also decided to remove thimerosal from animal vaccines in 1992, and yet this substance, which is 49% mercury, is still in human vaccines. Don't our children deserve as much consideration as our pets?

I think I'd rather listen to the more sensible voice of Dr. Bernadine Healy, former head of the National Institute of Health, who says:

Listen to the patients and the patients will teach...I think there is an inexcusable issue, and that's the lack of research that's been done here...A parent can legitimately question giving a one-day old baby, or a two-day old baby [the] Hepatitis B vaccine that has no risk for it [and] the mother has no risk for it. That's a heavy-duty vaccine given on day two [of life]. I think those are legitimate questions.
Dr. Healy is also calling for a long overdue study of vaccinated vs. unvaccinated. Dr. Frank Engly, a researcher and microbiologist who served on the boards of the CDC, FDA and EPA during the 70s and 80s, warned:

The CDC cannot afford to admit thimerosal is toxic because they have been promoting it for several years...If they would have followed through with our 1982 report, vaccines would have been freed of thimerosal and all this autism as they tell me would not have occurred. But as it is, it all occurred.
In all likelihood the truth about vaccines is that they are both good and bad. While ingredients like aluminum, mercury, ether, formaldehyde and anti-freeze may help preserve and enhance vaccines, they can be toxic as well. The assortment of viruses delivered by multiple immunizations may also be a hazard. I agree with the growing number of voices within the medical and scientific community who believe that vaccines, like every other drug, have risks as well as benefits and that for the sake of profit, American children are being given too many, too soon. One thing is certain. We don't know enough to announce that all vaccines are safe!

If the CDC, the AAP and Ms. Brown insist that our children take twice as many shots as the rest of the western world, we need more independent vaccine research not done by the drug companies selling the vaccines or by organizations under their influence. Studies that cannot be internally suppressed. Answers parents can trust. Perhaps this is what Campbell Brown should be demanding and how the power of the press could better serve the public in the future.

 
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