More Research on Mitochondrial Disorders?
Update, 9am, 1 July: Today’s Washington Post has a story about Peter Hotez, the president of the Sabin Vaccine Institute, the chair of George Washington University’s department of microbiology, immunology and tropical medicine, and a consultant to the Gates Foundation, which is helping to develop vaccines to fight neglected diseases; his 15-year-old daughter, Rachel, is autistic. The article also discusses the media controversy about vaccines and autism.
ABC news reports on a Sunday meeting in Indianapolis of government health officials about mitochondrial disorders. The day before, New York Times reporter Gardiner Harris wrote that the meeting had been called for experts in mitochondrial disorders to discuss the “controversial case” of Hannah Poling, whose underlying mitochondrial disorder was found to have been “aggravated” by vaccines, after which she developed symptoms of autism. While one expert in mitochondrial disorders, Dr. Darryl Devivo, a professor of neurology and pediatrics at Columbia University, states that
“‘After caring for hundreds of children with mitochondrial disease, I can’t recall a single one that had a complication from vaccination’”
the ABC news nevertheless report implies, and quite strongly, that vaccines could lead to mitochondrial disorders:
At the heart of the issue for many specialists and concerned parents is whether vaccines — suspected by some people as being a cause of autism — might trigger mitochondrial disorders, which lead to autism.
“….[M]ight trigger mitochondrial disorders, which lead to autism”? Read quickly, this phrase suggests a seemingly direct link between mitochondrial disorders and autism—-an unproven connection. Quotations from Hannah Poling’s father, Dr. Jon Poling, a neurologist who was present at the Sunday meeting, follow:
Poling, who is also a neurologist, said he believes the vaccines may have aggravated a pre-existing condition, called mitochondrial disease, which in turn, led to Hannah’s autism.
Some hope that this meeting will generate more research.
“I guess I kind of feel like it’s Christmas Eve,” Poling said. “Tomorrow is Christmas morning and, hopefully, those presents will be grants in the form of serious federal monies to look into autism and its relationship to mitochondrial disorders.”
At issue is how prevalent mitochondrial disorders are in autistic children: Is this only a subpopulation” of autistic children? Dr. Poling has previously called for more research funds to investigate a mitochondrial-autism link. Many questions remain as to whether or not there is such a link: Writing in the March Salon, pediatrician Rahul Parikh, M.D., wrote that “mitochondrial disorder does not equal autism”; in a March New York Times op-ed, Paul A. Offit, chief of the infectious diseases division of the Children’s Hospital of Philadelphia, notes that the claim of a vaccine aggravating Hannah Poling’s underlying mitochondrial disorder is “biologically plausible.” That is, such a connection is possible in theory, but it does not appear to be worthy of belief and factual.
It remains to be seen where (to follow up on Dr. Poling’s analogy) “Santa” allocates research funds (presents). Some clarifications about vaccines, autism, and mitochondrial disorder and the as-yet-unproven links among them are much needed. Whatever actual connections among these are found in scientific studies, the association of these in the public consciousness grows, regardless of what the science says or does not. My own local New Jersey newspaper, the Star Ledger, is planning to do a story on “Did you ever have unfounded fears your child had autism?” and is seeking parental input, as Carrie Stetler writes:
Every generation of new parents has something specific to worry about, whether is [sic] was polio for parents in the Forties, or “stranger danger” for parents in the Eighties.
For today’s parents, the latest word to inspire dread is “autism.” For an article my Star-Ledger co-worker Kathleen O’Brien is doing on parental worries, she’d love to talk with parents who were concerned about signs of autism, only to discover their fears were unfounded.
There you have it. Autism is the childhood disease of the early 21st century and is a word that inspires “dread” (leading one to wonder, does the sihgt of an autistic child, as in my autistic son, sniffing a pack of sushi at the grocery store arouse this “dread” in onlookers?).
So dreaded and fretted is that autism word that one wonders if it not’s becoming synonymous with Something Bad Happening to Your Child. Consider again the June 28th New York Times article about the Indianapolis meeting. After mention of Hannah Poling, a second case of a child’s underlying mitochondrial disorder being aggravated by a vaccine is cited. This child—a 6-year-old Colorado girl who received a flu vaccine, had to be hospitalized, and, sadly, died—-did not have autism, though this point is not spelled out in the New York Times. The ABC news story also mentions this cas:
Federal officials are also looking at a recent case of a 6-year-old from Colorado who was treated with the flu vaccine FluMist and shortly thereafter “became weak with multiple episodes of falling to the ground,” according to a report in The New York Times. She was hospitalized, had surgery and later died.
Her case offers more evidence, according to the specialists, that the potential link between vaccines and autism merits government research dollars.
Would it not be more accurate to say that her case “merits government research dollars” about vaccines, or mitochondrial disorders?
Autism has become quite the buzz word, here in Jersey at least, and all the more reason to be clear about whether autism is being discussed or not. Santa might be checking his list to see and not only once, but at least twice.
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POSTED IN: Health, New Jersey, Rhetoric, Stereotypes
16 opinions for More Research on Mitochondrial Disorders?
John Gilmore
Jul 1, 2008 at 8:16 am
Dr. Chew,
You have made your reputation in autism circles as a denier of the autism epidemic and an unquestioning defender of vaccines, and all aspects of the medical status quo.
But now we are seeing the medical establishment slowly admitting that there is indeed serious reason to suspect a causal role of vaccines in autism.
And you don’t seem to have quite fathomed that the Federal government in the Poling decision admitted that indeed vaccines can cause autism.
In my neighborhood there is a child with autism on every other block. Why wouldn’t parents begin to fear that it could happen to their children?
If someone can actually prove that the hundreds of thousands of children, not adults, children– that have autism are a mere illusion your reputation will be secure. Claims have been made about this for at least 13 years but no one has done the epiemiology to demonstrate that there is no real incease, and in the meantime school districts across the country are being crushed by a tidal wave of children with autism.
It must be difficult to see the underpinnings of your world view crumble, but that is exactly what is happening. Undoubtedly, you are aware of that, which I think is what prompted your mocking of both parents and others who are genuinely afraid of autism. You can continue to mock but I soon think you will find yourself and your dearly held prejuices consigned to the realm of flat earth advocates.
Toxic
Jul 1, 2008 at 8:37 am
You son has low muscle tone, right?
Hmmm, could that be a mitochondrial issue?
Kristina Chew, PhD
Jul 1, 2008 at 8:43 am
You should see how much how powerful he is pumping the pedals at the start of a 10 mile bike ride!
Kristina Chew, PhD
Jul 1, 2008 at 8:55 am
@John Gilmore,
The federal government conceded that it was biologically plausible that vaccines had aggravated Hannah Poling’s underlying mitochondrial disorder, which, as noted above, would suggest that it is theoretically possible that there is a causal link. Very best.
Tom
Jul 1, 2008 at 9:40 am
John Gilmore,
You have made your reputation in autism circles as a proponent of the scientifically discredited hypothesis that autism is caused by thimerosal.
It must be difficult to see the underpinnings of your world view crumble.
Chuck
Jul 1, 2008 at 9:40 am
A 10 mile bike ride in 20 minutes is a lot different then a 10 mile bike ride in an hour. Neither do anything for upper body strength.
BTDT.
Daisy
Jul 1, 2008 at 10:32 am
Our local paper just ran a feature on the summer of 1955, dubbed “Summer of Fear” because of the skyrocketing number of polio cases. When considering vaccines, these stories are essential.
Karin
Jul 1, 2008 at 11:33 am
Yes, this just blew my mind when I read it yesterday:
“Federal officials are also looking at a recent case of a 6-year-old from Colorado who was treated with the flu vaccine FluMist and shortly thereafter “became weak with multiple episodes of falling to the ground,” according to a report in The New York Times. She was hospitalized, had surgery and later died.
Her case offers more evidence, according to the specialists, that the potential link between vaccines and autism merits government research dollars.”
I’m sorry, tell me exactly why a child with a reaction to a flu vaccine, who becomes ‘weak’ and then dies, shows that the ‘potential link between vaccines and autism merit government dollars’ ??? Was this child autistic? Isn’t the usual argument that the vaccine causes autism? Or are we now going back to just plain ‘vaccines kill people, we shouldn’t be giving them’ and let’s all go back to the ‘good old days’ when polio, smallpox, measles, etc. ran rampant?
Chuck
Jul 1, 2008 at 12:13 pm
Many historical reprints are factually incorrect given current knowledge and may be considered politically incorrect to print in today’s newspapers.
Kristina Chew, PhD
Jul 1, 2008 at 1:04 pm
Swimming kind of does, and sustained and regular physical, aerobic activity and conditioning—–who knows but maybe there’s some weights lying around the house that get picked up, for cross training…..
Regan
Jul 1, 2008 at 1:51 pm
The Washington Post/Hotez article was interesting for the back story and kind of disturbing. I wonder if the situation with Rachel is as negative as portrayed, and whether that was a function of interview or editing. Certainly it conveyed a lack or insufficiency of access to appropriate services and supports for that family, not the least of whom is Rachel herself.
The paragraph that rang the truest to me in the story,
“It is not one disorder; it is at least several, and there are probably hundreds,” acknowledged Andrew Gerber, a Columbia University autism expert. “There are autisms– there is an autism spectrum disorder.”
Regan
Jul 1, 2008 at 2:56 pm
Just something that might be related to this discussion, however I don’t have full text access and this is just the link page,
Autistic features part of global neurologic syndrome in children who have mitochondrial disease
Gregory M. Enns
July issue AAP News 2008 29: 20.
Kristina Chew, PhD
Jul 1, 2008 at 3:04 pm
I found the 3rd page of the Rachel Hotez story puzzling, too, especially the comment about her behaving like a much younger child.
daedalus2u
Jul 1, 2008 at 4:32 pm
“Mitochondrial deficiency can theoretically give rise to any symptom, in any organ or tissue, at any age, and with any mode of inheritance.”
http://www.nature.com/nature/journal/v440/n7084/full/440600a.html
Regan
Jul 2, 2008 at 6:10 pm
Kristina said,
“Would it not be more accurate to say that her case “merits government research dollars” about vaccines, or mitochondrial disorders?”
————————–
I would agree. To state a priori that this is necessarily about autism seems to put the cart before the horse.
There may be more details, and I am sincerely sorry about the little girl’s death in CO, but as described I am not seeing the necessary autism connection, which makes the story seem somewhat disjointed if that point is being made.
Back in Jersey Where There’s “Looming Dread of Autism”
Jul 20, 2008 at 2:04 pm
[…] this month, the Star-Ledger sought parental input about parents having “unfounded fears” of autism in a child. I spoke to Ms. […]
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