CDC “Stakeholder” Collaborations
Katie Wright
At Wednesday’s Mt. Sinai autism and environmental science conference the audience was subjected to an endless oration about the CDC’s “Learn the Signs” pr campaign as well as a vague discussion of “CDC/ stakeholder collaborations.” What either of these subjects had to do with environmental toxins is still unclear to me but then again I was woozy 45 minutes into the lecture.
How nice if it were true that the CDC has reached out to advocacy groups. However, I had no idea what Dr. Coleen Boyle was speaking about. CDC/ ASD family projects? Who? What? Where? When? If I had been allowed to ask questions we might have been able to learn something. But thanks to Dr. Phil Landrigan for barking “NO questions!” at me, we never got an answer.
Until now. Thank you Laurette Janak for attending a CDC “stakeholder” partnership program starring Ms. Alison Singer. (listen here) Ms. Singer as you may remember had to leave her position at Communications Director of Autism Speaks because she unable to represent the community of families. Ms. Singer has a daughter who evidenced signs of autism from babyhood. Her lovely daughter Jodie was born with a form of classic autism. Jodie never regressed, never had adverse vaccine reactions, and never developed encephalitis, febrile seizures, GI disease or chronic autoimmune dysfunction.
Ms. Singer has no medical training and, unlike many of us, has been fortunate not having spent weeks to months of our lives taking an ASD child to the emergency room for seizures, blocked bowels, endoscopes, IVIGs, muscle biopsies, EEGs….Ms. Singer has a healthy ASD child. She now runs a small advocacy group who membership information has not been made public. Dr. Paul Offit, a vaccine patent holder and millionaire many times over thanks to his vaccine patents serves on her board and helps fund the organization. I do not believe this fact was disclosed at this CDC funded vaccine education workshop.
All of this, however mysterious, is perfectly fine with me. Many of us had extremely different experiences w/ autism. Some children seem to have a primarily genetic form of ASD, some distinctly environmentally triggered autism. No parents should be advocating to dismiss another’s child’s suffering. No parent should be telling doctors or the CDC that they know another child’s trajectory into autism better than their own parents. How arrogant. Isn’t that how we got into the “blame the parents for causing autism” mess in the first place?
Ms. Singer was not with me when I took my typically developing toddler for 7 vaccines and she wasn’t with me as he had febrile seizures that night and went stiff in my arms. She also wasn’t with me as he screamed all day and night. However, Ms. Singer and the CDC feel entitled to judge our families and mock our children’s experiences in taxpayer funded “vaccine education” seminars to medical professionals.
OK, so now we know what Dr. Coleen Boyle meant when she spoke about CDC/ “stakeholder” collaborations. In speaking to the audience Ms. Singer blames Jenny McCarthy, whose son had to be placed in a medically induced coma after almost dying from vaccine induced seizures, for “creating” public mistrust of our immunization program. Ms. Singer describes Ms. McCarthy as a non medical professional, which is strange because neither is Ms. Singer yet she is the one leading a Center for Disease Control workshop for medical professionals. Ms. Singer castigates “Oprah Winfrey” for allowing Ms. McCarthy to share her story. Ms. Singer denounces Larry King for allowing an open and honest discussion on vaccine safety. Ms. Singer faults Jim Carey for supporting Ms. McCarthy’s mission for more vaccine safety research. Ms. Singer alleges that parents like you and me are endangering the health of every American child by simply asking questions (that no one will answer) about our packed immunization schedule.
In short it is everyone else’s fault that the vast majority of American parents are concerned with vaccine safety. A bunch of stay at home, largely broke, Moms are involved in some kind of evil cabal with Oprah, Larry King, actors, and assorted members of the media, for fun I suppose? Our goal is, I am guessing, over turning the all national law and order?
Finally Ms. Singer and the CDC presented the audience with page after page of D- quality statistical vaccine safety research (paid for by vaccine companies and/ or vaccine patent holders) as irrevocable proof that this subject is closed for debate. Check out this sad and desperate research at 14studies.com
So now you know how the CDC is spending your taxpayer dollars for their “collaborations” with the ASD public.
Aspie,
To further clarify my previous comment: it is frequently not the case that children with autism who also have gastrointestinal dysfunction have only ONE cause of that dysfunction. They frequently have food intolerances PLUS the infections I previously listed (ie. both at the same time). These children can also have more than one infection simultaneously - such as Candida AND Clostridium Dificile. In addition, it can take several weeks for the results of a Comprehensive Stool Analysis with Parasitology (or a Yeast Culture) to be available. Therefore, it is advisable for tests to be done for more than just food intolerances if at all possible. A parent can start his/her child on the gf/cf or other restrictive diet while waiting for the results of the food intolerance testing; in order to effectively treat infections/parasites the results of stool analysis is usually needed. Also, due to the SEVERE pain that these infections can cause, self-injurious behaviors and aggressive behaviors can develop. Behavior intervention plans are not effective for children who are in that kind of pain.
Please note that more effort is needed to keep a child on a restrictive diet than to read labels - not all ingredients have to be listed on a food label. You have to telephone to verify that the substance is not present - whether omitted from the label or possibly present through cross-contamination.
I do agree that food intolerances need to be tested for and addressed. Unfortunately, the act of removing the offending food(s) - while it can cause great improvement - frequently does not resolve the problem.
Posted by: Carolyn M | December 18, 2010 at 04:58 PM
Carolyn: I do agree with DAN doctors on the issue that you should first test for food intolerances. You've made an accurate point in that other factors may be causing the GI issues. However, food intolerances are the most common cause. I'm focusing on issue because many food intolerances are misdiagnosed as disorders such as IBS. There are still far too many people unaware of these issues. In the case of food intolerance it's as simple as removing the offending agent (and an eye for reading labels). In my opinion, it's better to first test for conditions with relatively simple solutions. If you go through simple solutions don't work, then you your time to testing possible solutions requiring greater time, energy, and resources.
Posted by: Aspie | December 17, 2010 at 07:26 PM
The CDC should open their minds. All children who have autism did not experience what Alison Singer's child has.
My child's autism is different. My friend's children with autisma are each different.
Thanks Katie for speaking up.
Posted by: Another concerned mom | December 16, 2010 at 11:33 PM
Dear Jeff C:
I agree totally.
As you said:
1. Arguing with the CDC, NIH and IACC is non-productive.
2. Talk to/and target parents about the vaccine issue.
And I would add one more thing
3. Start talking to Congress/Senate representatives about cutting funding to the bare bones with the Dept. of HHS. In the past autism organizations have promoted getting more funds for the CDC and NIH to fund research. The Dept. of HHS is USELESS.
In these bad ecomomic times where there is over 10% unemployed and the US Government is driving up the debt so much that China owns us. It is time to get serious and cut the Dept of HHS budget as close to ZERO as possible. They are not needed. Only the drug companies need them.
Posted by: Autism and Anti-Vaccine Advocate | December 16, 2010 at 05:56 PM
Jeff C., you're absolutely right. There's no reasoning with the 'experts' in the medical establishment. The only thing they're expert at is not helping autistic kids. I agree with you...these programs, conferences, whatever you want to call them, are a waste of time.
Posted by: Concerned Mom | December 16, 2010 at 05:45 PM
Thank you Katie.
Posted by: Henderson | December 16, 2010 at 05:20 PM
Aspie,
Your post implies that - for those of us whose children with autism also have gastrointestinal issues - if we only test our children for these intolerances and remove the offending foods that the gastrintestinal issues will no longer be a problem.
It would be really wonderful if that were true.
Unfortunately, food intolerances are NOT the only factor involved in gastrointestinal dysfunction for our children (and by the way, testing for food intolerances is one of the first things a DAN doctor will advise). Another MAJOR factor is infection with such organisms as Candida, Clostridium Dificile, pseudomonas, citrobacter, etc. Candida can infest the intestines and it can take YEARS to resolve. Clostridium Dificile can appear to die-off and then recur, over and over again. These are chronic problems - and parents do not "sit there complaining" and do nothing. We are very busy trying to help our children - we do not want to see them in pain (and with these infections the pain is very frequently SEVERE). Also, please note that the phrasing you have used in your post is very condescending and otherwise offensive: "do the smart thing" and "sitting and complaining". Please try to use less offensive language in the future if you are really trying to be helpful.
Posted by: Carolyn M | December 16, 2010 at 04:11 PM
I concur. I would rather those who have no medical training or degrees keep out of healthcare. I would also like pharma to be regulated as to how much fudning they can give and how much control they have over hospitals.
I remember watching the House episodes were the dude bought his way onto the board (represented a pharma company) and used the hospital to promote and sell said company's drugs. He tried to get House fired when he refused to endorse the drugs.
That should not be allowed to happen. That is to much control, not to mention a major conflict of intrest that would never be allowed in any other form of buisness.
Posted by: Theodora Trudorn | December 16, 2010 at 12:29 PM
My admiration for Katie is second to none, but I honestly don’t understand why we continue to bang our heads against this brick wall. On this issue, the medical establishment and their government cohorts are hopelessly corrupt. Everything is viewed through the lens of protecting and expanding the vaccine schedule. It makes no difference if their motivation is philosophical or financial, the results are the same. Every story of regression after vaccination or biomedical recovery will be ignored. Since we question the safety of the current vaccine schedule, we are a threat that must be discredited and neutralized. If we say the sky is blue, they will argue the point. We are wasting resources fighting them.
I believe it is much more effective to target parents. I’m amazed how receptive people are to my son’s story of regression and subsequent recovery. In talking to ordinary people (as opposed to shills or ND fanatics) I’ve never received the spittle-flecked denunciations or shout downs we routinely receive from this crowd. People are interested and ask intelligent questions. They tell me of their own suspicions and concerns. We are winning them over, but it does take time. Instead of trying to get through to the sellers, we need to target the customers.
Arguing with these guys is like arguing with a drug pusher. It won’t work.
Posted by: Jeff C. | December 16, 2010 at 11:44 AM
The only "stakeholders" that matter to the CDC are the drug companies and their shareholders. They pretend to be acting in OUR interest, while nothing could be further from the truth. It's all window dressing and a complete waste of our tax dollars. Governments have no business trying to practice medicine. Governments should get out of health care.
MEDICAL FREEDOM NOW
END MEDICAL FASCISM NOW
Posted by: patrons99 | December 16, 2010 at 11:23 AM
They really don't want me to start bringing the crazy. I will if I have to, but they do not want that!! It's a scary place to go, when I let that good old rage loose! And I'm the spectrumite!
Hell hath no fury like a mother protecting her cubs!! If chaos and anarchy is what it takes, I can go there. I'm sure we all can. Though I'm afraid they'll then just drug the water supply with zanex and then diagnose us all as sociopaths when we start acting like emotionless zombies as a result of that action.
*rolls eyes*
Posted by: Theodora Trudorn | December 16, 2010 at 09:12 AM
This is truly sickening.
Posted by: Twyla | December 16, 2010 at 12:25 AM
"Collaboration" with the ASD community is just a front to make it appear that they are "searching for the truth" when in fact they already know the truth that vaccines are the primary cause of autism and their job is to cover it up. They have no intention whatsoever to support any relevant research as this would expose the truth.
Posted by: Autism Grandma | December 15, 2010 at 11:51 PM
Holly, do you tell that to your daughter? It seems to me you wouldn't let her go to college if she wanted to. She sees you feel she has failed to perform up to your expectations. To say she can never do these things when she's only 10 years old is absurd. By looking at her in this manner, you are causing her a lot of inner turmoil and emotional distress.
Posted by: Aspie | December 15, 2010 at 11:23 PM
If your kids have GI issues, do the smart thing and check your child for food intolerances. Don't sit there complaining about them; in most cases a specific type of food or component such as a sugar or protein is causing it. Instead of sitting and complaining about the issues, why not take matters into your own hands?
Posted by: Aspie | December 15, 2010 at 11:16 PM
It is helpful to view the Autism issue as just one small but extremely hurtful & callous part of the overall & systemic Corporate & Big Money corruption of the USA & the world. Also the viewing & exploitation of people everywhere primarily as revenue units.
From: The Octopus that Giveth Autism, War, & Mortgage Crisis. grnally.com
Posted by: Mike Kohloff | December 15, 2010 at 08:13 PM
Thank you, Katie!
Yeah, I'm learning the signs: the signs that one or more of my "governmental health" agencies is suffering from an acute case of corruption and truth-obstructionism! But I don't really know at this point whether the seemingly increasing cumulative evidence of corruption actually represents a true increase, or to what extent this can be attributed to a shifting of diagnostic criteria and better diagnostic techniques.
Posted by: JenB | December 15, 2010 at 07:41 PM
I'm with you Kim and I'd add to that busy as hell trying to raise brain injured children. Like all of you, I too had very different plans for what I'd be doing with my time and energy but this crime against our children compels us to participate with every millisecond we can muster.
And Theodora I think our side hasn't created nearly the chaos or anarchy our situation deserves, nor the amount that will be necessary for us to see real change. People say, 'but then we won't be taken seriously'. We aren't being taken seriously now anyway.
Posted by: Alison MacNeil | December 15, 2010 at 07:33 PM
I appreciate you going. Thank you so much for keeping us all informed.
Posted by: Heather White | December 15, 2010 at 04:23 PM
One does not have to be a "medical professional" to look at a number of Autism issues, most of which the "professionals" refuse to discuss, or will even attempt to answer a damn question.
One does not have to be a "medical professional" to understand some basic public fraud, and the "professional lack of an effort" to get to the truth.
One does not have to be a "medical professional" to understand the vaccine stories of thousands of ASD parents, while the "professionals have no clue" of something 30 times more common than polio.
Posted by: cmo | December 15, 2010 at 02:50 PM
Thanks for all your hard work. You do a great job covering these meetings I think we all need to know with whom the CDC chooses to form alliances. It's maddening and upsetting, but we need to know nevertheless.
I have one observation. Like others on this blog, I bristled at the description of Ms. Singer’s child as “A healthy ASD child” or that she has a “genetic form of ASD”. Because my daughter has never been vaccinated, people quickly jump to that conclusion. “Oh, she must have a genetic form of ASD.” No, actually, I don’t believe that she does and if the commenting person had bothered to find out any other details about her I think they’d know better. Let’s not make this into a their children vs. our children debate.
Posted by: Nancy Naylor | December 15, 2010 at 01:53 PM
If Ms. Singer's believes her child has a primarily genetic form of ASD I am not going to argue with her. I have no right to to claim I know her child better than she does. I would never try to tell scientists that I am an expert in classic autism. Why Ms. Singer feels it is her right to portray herself as an expert in adverse vaccination reactions amazes me.
It astounds me that someone who has never even seen an adverse vaccine reaction is considered a medical expert by the CDC and is funded by them to lead a class on vaccine safety. Why the CDC financing a parent who no special knowledge or experience to discredit the experience of other families- and worse dismiss their child's suffering?
It is immoral, unethical and certainly NOT what the CDC is supposed to be doing with this congressionally mandated vaccine safety research and education money.
Posted by: Katie Wright | December 15, 2010 at 01:14 PM
The CDC can not reach out to ---wel me because the hate in my heart for them is too deep.
However, while Ms. Wright your heart of a lion keeps you at it and I do thank you- this Dr. Phil Landrigan has put himself in the public areana and thus he has to - suppose to answer those questions.
Someone give us an address and Kate give us a list of questions. I will be my pleasure to write either by email or snail mail and ask those questions.
If we do not get a response - ohhhhh it will be my pleasure to write every Congressmen in the House and Senate and tell them that a public servant did not feel it his duty to respond!
Posted by: Benedetta | December 15, 2010 at 12:32 PM
I don't know about you, but I'm in it to create Chaos and Anarchy! ;)
They can try all they want but they can't throw these fact aside, at least in my case. The fact that I have had documented leg problems all my life that escalated into the painful spasms that plague me now about four years ago.
I have had stomach issues for as long as I can remember, and have had times when I would start getting sick over and over for no apparent reason, which is also documented. I have always had a weaker immune system than my regularly developing peers, and even though it is now stronger due to vitamins and supplements, it is still weaker than my peer group.
I have times, usually durring periods of high stress where I stare into space for hours on end without blinking or responding to anything. These can now be classified, I have been told, as absent siezures, which can not be found using general testing, which they tried on me several years ago.
At the age of 5, I had a sudden decrease in my 20/20 vision. Despite of efforts to promote healthy eye sight, once again also using vitamins, each year my sight continues to get just a tiny bit worse. This, once again, is also documented fact.
All these issues can be tied back to times before I can remember, as the people around me have told me. Even though I did not regress quite the way others have, when I came out of a very violent and abusive situation at the age of 15, I regressed mentally to a 5 year old, and had to regrow up!
I am an aspie. I don't deal in emotion generally (though I do have them). I deal in facts. These are the facts. Period! And I am sure my story is not the only one like this. There is not a single aspie I have ever met who has not talked about a weak immune system at the very least!
Posted by: Theodora Trudorn | December 15, 2010 at 11:52 AM
I think this video contains the rebuttals to all of Ms. Singer's arguments (or should I say "APCO Worldwide's arguments.")
This is 1.5 hours of Dr. Wakefield speaking and taking questions at the Boulder Public Library on October 20. Allow a few seconds for it to load:
http://www.vaccinesafetycoalition.com/event-video.html
Posted by: Carol | December 15, 2010 at 10:46 AM
Yes, definitely the moms aren't the problem. As Jim Carrey so eloquently put it, "the problem is the problem." Someone once suggested that Alison Singer is "Science mom" on the science blogs. If so, words fail me as to how to describe her. Words like malicious, vile, embittered, odious come to mind. I picture her as being like the evil serpent, snake thingy in the Harry Potter movies. Just recalling some of the things she says and the way she says them. Ahhhhhhh, I'm creeping myself out... Whoever "science mom is she is very angry and bitter and may suffer from reaction formation.
Posted by: Jen | December 15, 2010 at 10:40 AM
"Ms. Singer has a healthy ASD child" So, a child with brain damage is healthy. Total crazy talk.
Posted by: Mary | December 15, 2010 at 09:59 AM
I went on Alison Singers' Autism Science Foundation blog and did a search for mitochondrial dysfunction, obviously a hot topic in our community and found nothing. No UC Davis studies. I did another search for "environmental toxins" nothing. Meanwhile she claims to be promoting the latest science on autism. She is a phoney.
I don't see why we parents can't reach out to the CDC and say we want more well rounded stakeholder involvement.
Posted by: Sarah | December 15, 2010 at 09:49 AM
Good point Kim. What do I have to gain from the ultimate goal of vaccine safety?
I won't get any money. It won't magically heal the damage done to my son.
My only motivation is to help stop this horror from happening to other families.
What do they have to gain/lose from their stance on the overloaded vaccine schedule? Why are they so motivated to stop simply the questioning of vaccine safety?
Too many to name here, but here are two we can start with:
1. MONEY (cough cough Dr. Proffit et al)
2. Legal recourse (cough cough CDC you CANNOT admit to the problem without the possibility of litigation, or worse..)
Posted by: casey | December 15, 2010 at 09:23 AM
When you realize what early diagnosis means it is more disgusting. The only treatment out there being drugs means that already misguided doctors will be covering up symptoms earlier thus delaying any hopes of early treatment and early recovery and yes prevention. The parents will be halted for a couple years at least pondering whether alarming new developments are due to the last drug introduced or progression of the diseases. It's a nightmare.
Posted by: patrick | December 15, 2010 at 09:13 AM
I wonder whether there is any connection between Singer's activities and her husband's executive position at McKinsey?
Until last year the CEO of McKinsey UK was Ian Davis brother of Sir Crispin Davis former CEO of Reed Elsevier (publishers of the Lancet)and non-executive director of GSK, and twin brother of Sir Nigel Davis the judge who pulled the funding on the UK MMR litigation.
Mckinsey, of course, are deeply involved in health management. In the case of the UK it was a National Health Service procurement agency which signed the indemnities for GSK's Pluserix vaccine in 1988 as it had already been banned in Canada (and later had to be withdrawn in the UK). No doubt this is all coincidence.
Posted by: Network Explorer | December 15, 2010 at 09:04 AM
Katie,
Thank you for covering these meetings so diligently and reporting back to us - you're providing a very important and necessary function.
I'd like to comment on a phrase you use from time to time:
"Some children seem to have a primarily genetic form of ASD"
I appreciate the way you want to avoid speaking for other parents and their experiences, but I object to the phrase "a primarily genetic form of ASD" in reference to children who were "born with" autism. The nine month gestation period gives a fetus plenty of time to be exposed to neurotoxins, and with the EPA telling us one in six women has high enough levels of mercury to affect a fetus - it seems pretty clear that "a genetic form of ASD" is not likely to be the case for most infants "born with autism."
I sometimes see people throwing this concession at outspoken ND's - "oh your autism is genetic" - but that's very unlikely to be the case with anyone with ASD. Just because someone is less affected or affected from birth doesn't mean it's genetic.
Considering autism didn't appear in the medical literature until about 70 years ago, it seems unlikely that ANY form of autism is genetic. And of course, there's no such thing as a genetic epidemic.
Posted by: Hugs are better than Hg | December 15, 2010 at 08:59 AM
I'm so sick of hearing about early intervention. My daughter had 8 seizures after her 4-month old shots, screamed incessantly, and was totally gone by 5-months old. I've never held a dead baby but I think I know what one feels like. Holding my daughter was like holding a rock - there was nothing there. I immediately started her on Cod Liver Oil, folic acid and B vitamins - the seizures stopped. I wanted to do chelation but was terrified I'd kill her. We did everything early - HBOT, diet, ABA, RDI, and eventually chelation. But the damage was done. Now at ten years old, she has social problems and is homeschooled because of severe auditory processing disorder. She will never go to college or be able to have a real job. Early Intervention needs to be Early Prevention. My daughter has brain damage for a lifetime thanks to 7 vaccines given at her 4-month well baby check-up.
Posted by: Holly M. | December 15, 2010 at 08:07 AM
"A bunch of stay at home, largely broke, Moms are involved in some kind of evil cabal with Oprah, Larry King, actors, and assorted members of the media, for fun I suppose? Our goal is, I am guessing, over turning the all national law and order?"
I SO AGREE! I've been mulling over and over this...WHY would anyone have a problem with today's vaccines if THERE WASN'T A PROBLEM WITH TODAY'S VACCINES! I've certainly got more to do in my life...this is NOT what I want to do, but somebody's gotta do it, because there are TOO MANY damaged children. I have no financial or any other way to gain. I'm so sick of this.
Posted by: kim | December 15, 2010 at 07:55 AM
Personally, I am grateful the CDC has publicly identified Ms. Allison Singer as one of the "stakeholders" THEY "collaborate" with.
Why would the CDC deliberate choose to publicly identify themselves as "collaborating" with someone who is a well-known, prominent vaccine industry "stakeholder"? To me .. it appears an act of pure desperation on their part.
If nothing else .. this "collaborative" effort helps further explain why the CDC appears so reluctant to support pending federal legislation that seeks to fund a common sense .. long overdue .. scientific, independent study of "vaccinated vs. unvaccinated" populations .. to ascertain .. once and for all .. if BOTH populations have suffered the same dramatic increase in chronic autoimmune diseases/disorders?
Posted by: Bob Moffitt | December 15, 2010 at 07:37 AM