PAUL OFFIT KNOWS AUTISM, JUST ASK THE ASSOCIATED PRESS
Dear Carla Johnson:
I found your article "Fringe Autism Treatment Could Get Federal Study" today on a potential federal study on chelation treatment for autism to be extremely one-sided and at times quite condescending of parents of children with autism. As a reporter for the Associated Press, we look to you to give us a fair and balanced view of the medical issues we face. As the parent of a child with autism, I was dismayed to consider how your report might be received by parents new to this debate who are drowning in the range of treatment options for their disabled children.
It’s worth repeating the first two sentences of your article for some perspective:
“Pressured by desperate parents, government researchers are pushing to test an unproven treatment on autistic children, a move some scientists see as an unethical experiment in voodoo medicine. The treatment removes heavy metals from the body and is based on the fringe theory that mercury in vaccines triggers autism — a theory never proved and rejected by mainstream science.”
We parents have grown very tired of being referred to as “desperate” by journalists.
Do you really think the NIH fund studies because parents are desperate? No, they fund studies because compelling anecdotal evidence leads them to believe that more work should be done to see if the anecdotes can be extrapolated to a broader conclusion to benefit more kids. This is how science progresses.
Why do you need to belittle it and call it “voodoo” medicine? Also, how can the “theory never proved” as you say be proven without doing studies? You can’t criticize that no studies have been done while a study is trying to be done! And, who is the “mainstream science” you refer to that has rejected this theory? I have never seen a document from “Mainstream Science” rejecting chelation therapy for autism. Isn’t the NIH about as mainstream as it gets and aren’t they the ones considering funding the study?
If your personal bias weren’t obvious enough in the way you wrote your article, I was even more dismayed to read your quote from Paul Offit, the Vaccine Industry’s well-funded spokesperson.
Quoting Paul Offit on an article on autism treatment is like quoting the Marlboro Man about a compelling treatment for lung cancer! Not only does Mr. Offit have zero expertise in the area of autism treatment—he has never treated a single child with autism and his specialty is infectious diseases—but also Mr. Offit is a paid spokesperson for Merck, he’s a vaccine patent holder on a vaccine currently in our recommended schedule, and he has been reprimanded by the US Congress for his conflicts when serving on a Vaccine Advisory Committee.
Worse, not one of Mr. Offit’s conflicts are mentioned by you in the article. Googling “Paul Offit and Autism” leads to more than 47,000 hits, which leads me to believe you were on deadline and chose the lazy way out to get a quote from the Vaccine Industry’s most reliable quote machine.
Unlike Dr. Offit, Dr. Insel of the NIH should be commended for listening to parents and pushing science to move faster. To date, neither the AAP nor the CDC nor Dr. Offit have any explanation for a crippling epidemic that is fast approaching 1 in every 100 children.
With deep disappointment,
Father to Jamison, Age 5
You can email your comments to the AP: [email protected]
JB Handley is co-founder of Generation Rescue and Editor At Large for Age of Autism.
my son's organic acid test came back positive for clostridia, a dangerous bacteria. he had become violent, resistant, hitting and biting. we treated the clostridia, and now he's able to learn and communicate again. how many children out there with "autism" will never have their yeast, bacteria, parasite, viral and heavy metal imbalances tested so that when treated, behavioral symptoms subside? this is so on my nerves.
Posted by: kim | July 10, 2008 at 08:42 PM
We tested my children's urine and it came back high for arabinose, which shouldn't be there in the levels we saw unless they have yeast overgrowth in their guts.
So, we treat for yeast. Less toxins, less pain, less gut inflammation. All this helps my children. Nothing voodoo about it.
In what way is that not science????
Posted by: Jack | July 10, 2008 at 03:32 PM
I was surprised that the title for the story came down as "Quack Research" on the AP news wires. I have no idea the background of the AP reporter on the story, but I did think that sounded a little biased. I reworded the story before posting it on my blog.
Posted by: NewsAnchorMom | July 09, 2008 at 10:09 PM
Jesse has a poster of Offit in a speedo in his dorm room. Click "Meet Jesse" too.
Posted by: Meet Jesse | July 09, 2008 at 07:53 PM
"demanding to be respected"
Don't overestimate yourself. Who said I want *your* respect?
I will continue to push forward on this issue regardless of what you or your cronies may think.
I'm in pursuit of the truth. And I know for a *fact* that injecting a neurotoxin into a baby is stupid -- plain and simple.
Whether you respect me or not is absolutely irrelevant to me.
Sorry to burst your bubble.
Posted by: Kelli Ann Davis | July 09, 2008 at 06:54 PM
"Can you suggest a better word to describe yourselves, tenaciously holding onto a belief that lacks any evidence whatsoever? Perhaps 'Antivaccians', as you are wont to worship at the altar of Jenny McCarthy, clinging to a belief that lacks any evidence and demanding to be respected?"
See, and there is where all of our ire towards pHARMa-whores like you and (for Pr)Offit comes from; the fact that all of these parents have experienced exactly the same thing makes us all desperate and delusional. Well, if that's true, then you'd better worry, because it looks like a disease that's spreading and it is only going to get worse. Thousands upon thousands of parents, Doctors, teachers, computer software engineers and scientists, all of us have seen the exact same thing happen to our children, and some of us were successful in helping our children, but we're somehow all crazy for wanting to help our kids and prevent this from happening to any others. I'm pretty sure all of us here can figure out who's nuts.
Go talk to your high-priests of the Vaccine Gods and tell them you have failed to obfuscate the facts as they have instructed you. Maybe they won't be to cruel and make you their next sacrifice.
Posted by: Craig Willoughby | July 09, 2008 at 06:04 PM
I find it interesting that people like you call us desperate for clinging to this "UNPROVEN*" therapy, then when medical science steps up to study and prove it you have idiots like the one who wrote this article complaining about the testing of it.
So which is it? How would you like it? What are you people afraid of?
*As for "unproven" I would like to point out again that we are not using chelation to "treat autism", we are using it to treat heavy metal toxicity that has been clinically diagnosed and proven in our kids. No doctor would chleate a child who doesn't need it. Yes, my son is autistic, but he is also lead and mercury toxic --are you suggesting I should NOT treat him for that BECAUSE he is autistic?
Are you a doctor?
Posted by: Jenny | July 09, 2008 at 05:59 PM
"We parents have grown very tired of being referred to as “desperate” "
Can you suggest a better word to describe yourselves, tenaciously holding onto a belief that lacks any evidence whatsoever? Perhaps 'Antivaccians', as you are wont to worship at the altar of Jenny McCarthy, clinging to a belief that lacks any evidence and demanding to be respected?
Posted by: Jesse | July 09, 2008 at 05:36 PM
We should create a Paul Offit Voodoo Doll and sell them on this website since we are a bunch of Voodoo Doctors.
Posted by: Elucidatus | July 09, 2008 at 03:37 PM
The Daily Green has an actual responsible piece on this. I am gonna comment over there... you should too.
Posted by: Ginger Taylor | July 09, 2008 at 12:21 PM
CLAP CLAP CLAP
Well written JB. A BIG Thank you from an EDUCATED parent using chelation to remove metals and to recover her 2 ASD children.
Posted by: JByrd | July 09, 2008 at 11:12 AM
"Dr. Susan Swedo, who heads the federal institute's in-house autism research and wants to study chelation, gained notoriety by theorizing that strep throat had caused some cases of obsessive compulsive disorder. The theory was never proved."
You know they're getting *desperate* when they start discrediting individuals in the NIH. Notice the buzz words: "notoriety" and "never proved."
I think Sue works for NIEHS (going on memory) and folks in our community have been talking to her for years -- she attended the last Autism One conference.
You know? The conference where they talk about *voodoo* treatments, and show *bogus* recovery films, and *brainwash* local politicians into coming and learning the latest about all things autism.
Ya, that one.
Posted by: Kelli Ann Davis | July 09, 2008 at 10:31 AM
Let's see if I've got this straight.
Child gets injected with mercury (at most vulnerable stage of development).
Child develops symptoms of mercury poisoning.
Child is confirmed to have mercury poisoning via stool, urine and hair analysis.
Parents and physician treat child for mercury poisoning with FDA approved DMSA which was developed for heavy metal poisoning. They use the product in the fashion it was designed to be taken (orally); supplement nutrients on and off chelating; run blood work and work with a physician to check for any subsequent medical problems.
Child loses symptoms of mercury poisoning as treatment progresses. Health is restored. Skills return to normal.
Obviously this is pure quackery employed by desperate parents who want to use their children as an experiment.
How could the government even consider looking into this?
Posted by: Julie Obradovic | July 09, 2008 at 10:30 AM
My little guy has been doing IV EDTA for a year with great results. He started potty training on week one!
We have him tested to make sure things are ok and the only off test result was that "his iron was a little low" once.
Our chelation doc started treating ALS patients this year and is seeing their symptoms improve too. He is working with a doc in NC (probably the same one mentioned here). He told me that Duke University came to the NC clinic for a week and were so impressed with what they saw that they called the Cleavland Clinic. The head ALS guy there came down the next day to see what was going on.
I was going to call the NC clinic and get some first hand information and write about all this, but life got in the way.
Posted by: Ginger Taylor | July 09, 2008 at 10:21 AM
I predict the NIH will do the study (eventually), do it without taking breaks or without nutritional support and then conclude it is dangerous as a premise to ban the practice in all cases (except when a child drops a thermometer in school or lead paint is involved).
Posted by: cynic | July 09, 2008 at 09:54 AM
Kim, my grandmother died of ALS last year. I wish I would have known that chelation could have possibly helped her. What really frightens me is that the diagnoses of neurological disorders like ALS, Parkinson's and Alzheimers is increasing in the elderly at nearly the same rate as Autism is increasing in our children. I have to wonder and worry about what we are doing to our genes!
Posted by: Craig Willoughby | July 09, 2008 at 09:44 AM
I have a close friend who was diagnosed with ALS several months ago. No cure. No treatment. No hope. (Sound familiar?) He got onto the board patientslikeme.com and learned that some ALS patients are finding measurable inmprovement in symptoms via heavy metal chelation. He was dismayed to learn his insurance wouldn't cover it. (Familiar?) He rented a house in Hilton Head and went to a doc down there for treatment. His tests showed significant heavy metal toxicity. Within three IV chelation treatments he could walk 1/2 a mile without his cane and without tiring, he could hold his 1 year old grandson safely. He has returned home. He is searching for a doc who will continue the protocol. And his fatigue and symptoms are returning in the weeks since he stopped treatment.
Humans need hope. We do. How do you tell a parent, take your 4 year old home and call a group home when he's 18 and sleep at night? Doctors, PLEASE learn. Isn't that your job???
Posted by: Stagmom | July 09, 2008 at 09:05 AM
OMG, chelation is so dangerous they are halting studies yet, they continue to give our children toxic vaccines that cause autism, asthma, on and on ... go figure. Chelation is helping my son tremendously with no side effects ... this is so maddening. Thank goodness we have eachother to help us help heal our sick kids. I can't wait for the day they all need to face the truth and see the train wreck that was left in their ignorant, money hungry path ... our children, millions of them.
Posted by: kathy | July 09, 2008 at 08:33 AM
National Enquirer or AP -- I am thinking National Enquirer. There is science and health insurance CPT/ICD-9 codes for Chelation. It goes back 50+years. This reporter is a disgrace. Sounds like she is getting a check like Dr Offit.
Actually - this article is so bad - even the "unaffected" will read between the lines.
Posted by: Lisa | July 09, 2008 at 12:32 AM
I coined a term about a year ago that I use in my articles: "Pharmawhore: One that conciders the profit margin over the health and well being of those in their charge"....(eg Paul "Pr"offit). The other article on Offit being channeled would have been nice were it the case (that would mean the @$$hole was dead!
Posted by: curt linderman sr | July 09, 2008 at 12:00 AM
ok, one more... I was feeling cheeky... here is a snipit from my letter to the AP (this is why I leave the letter writing up to you all blessed with tact):
"...My son dumps high amounts of lead each time I chelate him. He has OBVIOUS heavy metal retention/detox issues.
Carla has obvious anal retention issues. Who is she in bed with (literally or figuratively)? That is what I wonder when I read an article so slanted and biased.
There is plenty of evidence and science to back up the claims that autistic kids are unable to excrete heavy metals. All it takes to find such research is an internet connection and the ability to read. Carla has one of those…
By the way, “dummy pills”? REALLY? In the grown-up, literate, real world we call those Placebo Pills.
If the AP would like an unbiased article on chelation, that is much better than Carla’s I think my three year old is free this weekend –but I will have to check his schedule."
Posted by: Jenny | July 08, 2008 at 11:50 PM
1. I think I am going to write a book, "Offit's a False Prophet"
2. Voodoo medicine? I would explain the whole "chelating lead for 50+ years" thing, but why bother... this girl is a moron --she should go back to writing for her High School paper.
Posted by: Jenny | July 08, 2008 at 11:35 PM
I had put "desperate parents" in my "10 Worst Cliches" post at AOA. I wonder whether this chick knows Gardiner Harris... or simply belongs to the same cult of ignorance. Relentlessly defending vaccines despite the facts and thinking they're saving the world, one yellow lie at a time.
Posted by: nhokkanen | July 08, 2008 at 11:10 PM
Congratulations to Dr. Insel for going ahead with the study.
As for Ellen Silbergeld of Johns Hopkins University's Bloomberg School of Public Health who said, "I don't really know why we have to do this in helpless children," I couldn't agree more. If Modern Medicine wasn't addicted to vaccines with poisons in them, and demanding we give so many of them to infants, maybe we wouldn't have to do it.
And I think Dr. Martin Myers, former director of the federal National Vaccine Program Office who said he believes giving chelation to autistic children is unethical, needs to go back to school and take a class in ethics. He'll find that injecting infants with known neurotoxins is certainly unethical, and should probably be criminal.
But Offit's right, "Science has been trumped by politics in some ways." He's been playing politics with science for years.
Posted by: Harry Hofherr | July 08, 2008 at 10:54 PM
Offit - "Science has been trumped by politics in some ways." muhuhaahaaa MU HU HAA HAA HAA!!!
Posted by: Elizabeth | July 08, 2008 at 10:26 PM
This Offit reminds me more and more of Vinnie Strully of NECC in Massachusetts. They have to be connected somehow.
I'm sure when Offit's book comes out Strully will make it his bible at his center. Sorry, but people like Offit and Strully are sickening. These types seem to be anti-child and pro marketing/money makers if you ask me.
Posted by: Jen | July 08, 2008 at 10:11 PM
"Vaccinianity - (Vax.e.an.eh.te) n. The worship of Vaccination. The belief that Vaccine is inherently Good and therefore cannot cause damage. If damage does occur, it is not because Vaccine was bad, but because the injured party was a poor receptacle for the inherently Good Vaccine. (ie. hanna poling was hurt when she came into contact with Vaccine, not because the Vaccine was harmful, but because her DNA was not to par or because her mitochondrial disorder was to blame.) Vaccine is presumed to have rights that supersede the rights of the individual, while the human person's rights must defer to Vaccine."
Posted by: Ginger Taylor | July 08, 2008 at 09:52 PM
Kim... you get the quote of the month!
My husband is constantly commenting on how vaccination has become a religion in the medical community and people get more offended by questioning their safety than when someone burns a bible.
Vaccines are just pharmaceuticals and should be treated with the same caution as any other pill or injection.
Thank you for giving us some succinct language to describe this phenomenon
Ginger... off to start a new dictionary... Biostitute... Vaccinianity...
Posted by: Ginger Taylor | July 08, 2008 at 09:29 PM
Huh? "Voodoo medicine"... now wait a minute... shiznit! I guess they were performing "voodoo medicine" on kids with lead poisoning too, and I know my brain is very tired these days but isn't chelation the medically necessary treatment for children and people with lead poisoning???
Again, my brain is tired these days, but I think Marlboro Man died of lung cancer. I'm sure he would have enrolled himself in a compelling treatment study had one been available.
Maybe if Dr. Paul Obfustication (it's got a nice ring to it) would just take those 1,000 or 10,000 vaccines all at once and which he says is safe to do and an infants immune system can handle; well if he lived and I was in charge, I would be in one hell of a bad spot.
Do I listen to the devil on one shoulder telling me to leave him in the world he has created and promoted? Or do I listen to the angel on the other shoulder and provide him with the "voodoo medicine" which has healed and recovered so many of our kids.
I honestly can not answer that right now.
I am glad to hear the NIH is considering such a study. I will whoop for joy if they move forward with it! And if one of my local DAN! Docs were part of it, I would gladly and without fear enroll both of my boys in it!
So stick that in your hat, Carla Johnson.
Thanks for the column and info JB and AoA. Well done, as usual! :D
Posted by: Angela Warner | July 08, 2008 at 09:10 PM
The AP article was the typical bullshit. Not worth the time it took to click and read it. The good news is, I had people (not in the autism community) forwarding it to me, knowing it was total bullshit!
Posted by: Michelle O'Neil | July 08, 2008 at 09:08 PM
Shucks, reporter Carla Johnson couldn't find any doctor successfully doing chelation on children with autism to interview. Did she even look for one? Never mind, she found Dr. Martin Myers, former director of the federal National Vaccine Program Office who said he believes giving chelation to autistic children is unethical. And the ever-familiar name of Paul Offit cropped up telling us, "Federal research agencies must 'bring reason to science' without catering to a public misperception."
Johnson had loaded terms like "desperate parents," "unethical experiment," "voodoo medicine," and "fringe theory" when it came to reporting on chelation as a treatment for autism. Nothing was said about the horrendous levels of untested toxins like mercury and aluminum these kids received in their vaccines.
I take issue with every term Johnson used:
"desperate parents" ... Try dedicated parents who refused to accept the write-off from the medical community that there is no cure for autism. Intelligent parents
who tested their children for heavy metals and then sought proven ways to remove the toxins. And successful parents who've gone broke
recovering their kids and now have seen stunning improvements.
"unethical experiment" ... Nothing could top the inhuman experiment on a generation of children perpetrated by those running the vaccine program. What kind of
ethics allow for exposing babies to deadly neurotoxins?
"voodoo science" ... What comes immediately to mind are the tobacco science studies the CDC periodically cranks out as proof that it's safe to inject poison into
"fringe theory" ... I don't know who taught most health officials toxicology, but there's no such thing as "safe mercury." That's the insane term we've heard for
years from the folks at the CDC. Show me one toxicologist who'd be willing to lay his/her reputation on the line with that one.
I seriously think Carla Johnson missed the whole point of using chelation treatment when her whole premise was that it's wrong.
Posted by: Anne Dachel | July 08, 2008 at 09:05 PM
Great letter. They may call us desperate but the tables have turned and they now are the desperate ones. Dignified, unified, and fortified describe us now.
Posted by: Teresa Conrick | July 08, 2008 at 08:41 PM
I love the smell of fear in the morning (newspaper.)
Dear Dr. Offit has an entire book devoted to bashing autism parents coming out this Fall called "Autism's False Prophets." After all, how DARE we tamper with his religion, Vaccinianity?
How many kids has HE recovered?????
Posted by: Stagmom | July 08, 2008 at 08:22 PM