DAVID KIRBY: HANNAH POLING REALLY DID CHANGE EVERYTHING
By David Kirby
On June 29, HHS, CDC, FDA and NIH will hold a major public workshop on mitochondrial disorders, autism and “triggers for neurological deterioration.” And to think, just four months ago, any scientist who had seriously proposed a high-profile, marquis meeting on such an esoteric subject would probably have been laughed out of HHS headquarters, and possibly his or her career.
But that was before Hannah and her parents came along.
When news of the two Poling concessions began to emerge in March, officials from the CDC and other agencies were quick to mount a defensive public relations posture, one that still clouds and confuses the importance of this seminal case, but now seems to be lifting like the haze over Atlanta.
Back then, CDC Director Dr. Julie Gerberding and others took to the airwaves to proclaim that Hannah’s case was, 1) Extremely rare, 2) An inherited, genetic condition that would have lead to regressive encephalopathy anyway, and 3) Without any bearing on the etiology of ASD or any relationship whatsoever to the court’s other cases of autism (which Hannah did not have, we were falsely told: She just had “autism like features.”)
Soon after that, I reported that mitochondrial disorders in ASD kids were not that rare after all. Estimates ranged from 7% to about 30% of all ASD cases involving an underlying dysfunction of the mitochondria, as measured through impairment of oxidative phosphorylation (and thus low cellular energy). Among regressive cases, the rate may be higher than that.
The CDC took note. On March 29, Gerberding told CNN’s Dr. Sanjay Gupta that, “If a child was immunized, got a fever, had other complications from the vaccines, and (is) pre-disposed with the mitochondrial disorder, it can certainly set off some damage…. Some of these symptoms can be symptoms that have characteristics of autism. I think we have to have an open mind about this.”
In fact, the CDC’s mind had become so opened after learning how prevalent mitochondrial disorders were in autism, that the agency agreed to dedicate a conference call with vaccine researchers and HMO executives on new research on the topic.
What did they learn? That many children with regressive ASD out there also had the same low-cellular-energy biomarkers as Hannah.
And there was more: The scientists told the government and the insurance industry (which is reportedly tired of footing the bill for so many neuro-damaged kids) that the nuclear DNA mutation that confers mitochondrial dysfunction, passed down through the father, could be as prevalent as 1-in-50 people, or 2% of the population.
Estimates of the classic, more rare and serious form of mitochondrial “disease,” meanwhile, which is passed down through the mother via mitochondrial DNA, are about 1-in-5,000, or 0.02%.
A week or so later, in Washington on April 11, the CDC announced its new draft research agenda for vaccine safety issues. Amazingly, among the questions that CDC officials now wanted answered was this one:
“Is immunization associated with increased risk for neurological
deterioration in children with mitochondrial dysfunction?”
Apparently, the CDC was one step ahead of everyone else on this question, because it simultaneously announced on April 11 that it had already formed, “a working group to study methods related to mitochondrial disorders and immunization, in collaboration with partners.”
Immunization and mitochondrial disorders are a very tricky subject. Children with such disorders might be more susceptible to autistic regression following a stressful event on their immune system. This “trigger” could include any number of childhood febrile infections – including those for which there are vaccines.
But then again, as Hannah’s case teaches us, the trigger might also be too many vaccines at once – in this instance, nine.
But what was it about those nine vaccines, given in five jabs that induced fever, and, “an immune response that exceeded metabolic reserves,” as Concession #2 described the “cause” of Hannah’s “autistic encephalopathy?”
What vaccine ingredient or ingredients induced her metabolic meltdown?
Was it the 50 micrograms of ethylmercury from thimerosal? Was it aluminum in several of her shots, put there precisely to create stimulation of the immune system? Was it one or more of the live viruses or attenuated viruses she received? Was it one of the other vaccine ingredients? Or, was it some combination of the above?
And, the question remains, wouldn’t some other natural fever have pushed Hannah over the edge just as easily? (It’s possible, though not certain, as I reported HERE.)
In less than two weeks, experts may begin to shed some light on these critical questions (and hallelujah to that.)
On June 29, a public workshop will be held in downtown Indianapolis, following a meeting of the United Mitochondrial Disease Foundation.
The title of the workshop is, “Mitochondrial Disorders of Childhood: Testing, Potential Relationships to Autism Spectrum Disorders, and Triggers for Neurological Deterioration.”
This landmark event is being sponsored by a number of Federal agencies including DHHS, CDC, FDA, NINDS and NIMH. “Observers are welcome,” the HHS says, “as seating allows.”
The Goals and Objectives as listed as followed:
“The workshop will convene 11 experts in mitochondrial disorders or autism to discuss how the neurology of mitochondrial disorders might inform autism research.” (Click HERE)
Meanwhile, the UMDF’s website gives us a slightly more expanded take:
“The workshop will address the implications for autism research of topics such as neurological features of mitochondrial disorders, current understanding of their exacerbating factors, and challenges in testing and diagnosis.” (Click HERE)
The italics are mine. In the Poling concession, the government said that vaccine-induced fever and immune stimulation exacerbated Hannah’s mito dysfunction, which caused her “autistic encephalopathy.”
Meanwhile, “Representing the mitochondrial disease communities at the workshop through their affiliation with the UMDF are: Charles A. Mohan, Jr., Executive Director and CEO of the United Mitochondrial Disease Foundation, Howard Zucker, M.D., J.D., UMDF Trustee, Salvatore DiMauro, M.D., Columbia University and Chairman of the UMDF’s Scientific and Medical Advisory Board (SMAB). Also representing the SMAB are Bruce Cohen, M.D., Cleveland Clinic, Vamsi Mootha, M.D., Massachusetts General Hospital, Doug Wallace, PhD., University of California, Irvine. Also attending are past SMAB members Robert K. Naviaux, M.D. PhD., and Richard Haas, M.D., both from University of California – San Diego School of Medicine and Tanja Taivassalo, PhD. who is a previous recipient of the UMDF research grant.
It looks like a nice group. I may not make it to Indy, but I can’t wait to read the transcripts.
And thank you, Hannah and her parents, for getting this big old ball rolling.
David Kirby is a journalist, Age of Autism contributor and author of Evidence of Harm. To read more of his work, please click on his name in our left sidebar. And click HERE to read his Huffington Post pieces.
For those wondering where to have your child checked for mitochondrial disorders: You can go to your local Children's Hospital and make an appointment with their genetics department. The genetics department should have a division dealing with metabolic disorders. It is covered by most insurance companies to do this. The blood work can run into the thousands so it is important to go where insurance will cover you. If your local children's hospital does not have a genetics department, call the main phone and ask for directory services and tell them you need a doctor to test your child for metabolic disorder.
Hope this helps.
Posted by: Colleen | June 21, 2008 at 05:16 AM
David -- hope you are still keeping tabs on this. Interesting piece of info for you; I was poking around at the EMEA website (European Medicines Agency) and check out this press release from the June meeting of the pediatrics committee:
http://www.emea.europa.eu/pdfs/human/pdco/29649408en.pdf
Merck, Pfizer and Glaxo each have received "positive opinions on investigative plans" for different drugs addressing the areas of metabolism, immunology and gastroenterology.
It looks to me like they are going to try to keep the vax injury genie in the bottle long enough that they will have a miracle cure at the ready when the truth comes out.
I found this interest in metabolic problems rather intriguing. Is there any other evidence of pharma companies having a head start on this type of research? Like maybe they've known about the mito/metabolic issues for quite some time?
Posted by: Garbo | June 19, 2008 at 06:46 PM
Please forgive the naivety of this question, which may have been discussed before, but I have been unable to find anything on this: Can anyone advise me as to what type of Dr./Specialist do you see to have "mitochondria" tested on a child with autism? Also, does regular health insurance cover any of the cost involved? Thanks
Posted by: mcw | June 19, 2008 at 03:11 PM
"Gayatri, I believe Dr. Amy Yasko is the expert you are looking for. You can find more information at www.holistichealth.com. Follow the links in the left-hand column."
Thanks Meg for the suggestion. Yasko connected a LOT of dots for us and I do need to re-read her protocol. Parts of Yasko worked for us and then there are other parts that don't seem to pan out. The clinical symptoms and tests don't completely match what you might expect from the mutations.
I feel like there is something else that is still unaddressed, not sure exactly what. I read today that cholesterol pathways are the same as those of CoQ10, there is much about the precursors to the mito problem I wish I knew more about. I was hoping the mito people might provide some answers.
Posted by: Gayatri | June 19, 2008 at 01:46 PM
"I am going to run some off this by my DAN the next time we see him but my question is this - who out there can I get in touch with who will understand my son's problems exactly, know what tests to run, and tell us what supplementation is in order."
Gayatri, I believe Dr. Amy Yasko is the expert you are looking for. You can find more information at www.holistichealth.com. Follow the links in the left-hand column.
Her program is not easy, nor is it fast, but it is very comprehensive and she is recovering children.
Posted by: meg | June 19, 2008 at 11:04 AM
June 29 is a Sunday.
Posted by: Holly M. | June 19, 2008 at 09:23 AM
Danger,Danger,Danger,Will Robinson.
Now that the insurance companies are being forced to pony up money rather than the families of vaccine damaged children we are in danger of being exposed!!!!!!!!!!
Quick call Alpha Control so they can buy us some time to spin this baby, so we can escape with our fat pensions and golden parachutes and leave someone else holding the bag with tons of polluted vaccines that were never recalled but instead injected into little innocent babies.
Posted by: Richard | June 19, 2008 at 01:31 AM
Health insurance is legalized theft.
Lawrence, thank you for all of your comments regarding HHV-6. I intend to look at more of this myself, when I'm able, but you're providing a great service in just reporting what you know, and I'm pleased to see your continued reports.
Just as I've come to learn that autism isn't the only type of vaccine damage, and mercury in shots isn't the only source of mercury poisoning, I have little reason to doubt that we're still just aware (most of us) of the tip of the iceberg that *we* happen to be standing on.
Alzheimer's disease, for example, is pretty much autism for old people. And, just like autism, it's a very ugly thing.
That doesn't mean (for those of you "neurodiversity" people lurking here) that people who *have* autism or Alzheimer's disease are any less to be valued because they're sick.
And don't even talk to us about people who are just different, quirky, forgetful, or "getting on in years"--those people, by definition, are not sick or disabled.
The people are beautiful, but the disease process is ugly. And it is a disease process.
I have seen both autism and Alzheimer's disease affect people that I love. It killed my mother, God rest her soul, and the yearly flu shots she began to get in her later years (before I knew any better) and the tons of mercury fillings (all carefully replaced with fresh, new mercury as needed) were the very things that pushed her over into *her* toxic tipping point.
I know that now.
It makes me sick to think that those of us who have been the most "careful"--got all the vaccinations, trusted our doctors, filled each little decayed spot, replaced those old fillings before they cracked our teeth--we're the ones suffering; we're the ones who've been "had."
Kelli Ann D., you have posted elsewhere that you just can't bear to hear (again?) just exactly what happened to your son's brain.
I'm kind of there right now.
But I have an e-mail to write to try to help somebody else, the best I can, and that will take my mind off of it tonight.
Terri L.
Posted by: Terri Lewis | June 18, 2008 at 09:48 PM
"the insurance industry (which is reportedly tired of footing the bill for so many neuro-damaged kids)"
Yeah, just got another denial notice from them. I'm not sure what bill they think they are footing, but it sure as hell isn't my son's.
Posted by: Jeanne | June 18, 2008 at 09:04 PM
David,
Thank you for writing againg about the mitochondrial-vaccine link. I'm curious what the the UMDF folks will be able to share regarding the recent case and further questions we parents now have about our children's problems.
Gayatri, let me know if you get any good ideas for your son. I am also trying to find answers similar to what you've posted. You have my email--please keep in touch.
Cathy
Posted by: Cathy Jameson | June 18, 2008 at 08:57 PM
Insurance companies? Hell, I couldn't even get them to cover liquid Carnitine, only the capsule or vice versa. It was ridiculous. Since when do they over cover ANYTHING?
Posted by: Stagmom | June 18, 2008 at 08:01 PM
For three decades the CDC and the NIH have looked the other way while an epidemic of mitochondrial dysfunction has spread throughout the world.
That epidemic is Chronic Fatigue Syndrome. Like autism activists, CFS activists have begged the CDC to come clean about the serious nature of the CFS epidemic. It's so serious that it has been referred to as "AIDS lite."
Maybe the CDC thought that we could live with CFS because it's not fatal. Well, it is fatal but the deaths are erroneously blamed on other things.
If the CFS epidemic of mitochondrial dysfunction has resulted in the epidemic of autism, maybe the CDC can no longer live with the consequences of its willful blindness.
The best way out is the truth. The CDC should tell the truth about CFS and its connection to mitochonidrial dysfunction. And they should also tell the truth about HHV-6, the insidious virus that seems to be linked to CFS, AIDS and the epidemic of mitochondrial dysfunction.
Tomorrow in Baltimore a major conference on HHV-6 begins. Major HHV-6 researchers will be there, including past and present employees of the CDC and NIH. It's time they started letting the cat out of the bag.
Posted by: Lawrence | June 18, 2008 at 06:51 PM
"the insurance industry (which is reportedly tired of footing the bill for so many neuro-damaged kids)"
Yep...they just rejected a big claim of ours. Kinda like, "Sorry, not our problem."
Lovely.
Posted by: Diane | June 18, 2008 at 06:02 PM
Reading that insurance companies spurred this investigation -- rather than parents' direct reports, or lab work from the child's physicians -- absolutely sickens me.
Once again, money talks. Oh, the humanity....
And we parents will be spending the next several decades battling to get healthcare and therapy for our children. I hope everyone with a child on the autism spectrum recruits family and friends to lobby; we need every voice.
Posted by: nhokkanen | June 18, 2008 at 05:44 PM
Thanks David for keeping us informed, and yes thanks to Hannah (I hope that one day she is completely recovered) and her parents, for informing the rest of the world about mito dysfunction.
My son's mito dysfunction looked like this upon diagnosis - panic levels of alanine, elevated ammonia (slightly over the upper end of the ref range), elevated lactate (towards the upper end and within the reference range). Its incomplete information but that was all that was tested. I have been looking at research on "hyperalaninemia" and looking at studies with the keywords of anemia, lactate, pyruvate, and ammonia, trying to figure out what exactly set off my son's issues. There was elevated B12 and elevated folate, both of which may or may not be related to the mito problem, but I did see at least one study that mentioned anemia therein. There may be more.
I am going to run some off this by my DAN the next time we see him but my question is this - who out there can I get in touch with who will understand my son's problems exactly, know what tests to run, and tell us what supplementation is in order. I am going to assume this is fixable even though I don't know what kind of mito problem this is - the mom's or the dad's.
Is there any mito expert out there who will one day talk to the DAN Think Tank and share this information? How will this information percolate to the people who need it the most? Time is fast running out and our kids brains need to heal.
Posted by: Gayatri | June 18, 2008 at 05:20 PM