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Sunday, November 8th, 2009

Experts to Hold Meeting on Mitochondrial Disorders

June 27, 2008 by Kristina Chew, PhD  
Filed under Health

Ever since March when the government conceded that vaccines had “aggravated” a pre-existing mitochondrial disorder and led to symptoms of autism in a 9-year-old girl, Hannah Poling, whether there’s any link between mitonchondrial disorders and autism has been under questions. Is there a “subpopulation of mitochondrial autism“?, Hannah Poling’s father, Dr. Jon Poling has asked. Researchers at Medical Neurogenetics have said they have found evidence of a genetic link and mitochondrial disease. Anecdotally, I’ve heard parents of autistic children seeking out tests for mitochondrial disorders.

In the June 28th New York Times, Gardiner Harris (who has previously reported on vaccines and autism) writes about a meeting on Sunday in Indianapolis that federal officials have called for experts in mitochondrial disorders discuss the “controversial case” of Hannah Poling. The meeting is co-sponsored by co-sponsored by the the National Institute of Mental Health, the Food and Drug Administration, the C.D.C., the National Institutes of Health, the Department of Health and Human Services and the National Institute of Neurological Disorders and Stroke.

The New York Times article suggests that another controversy could be afoot:

the government has so far kept quiet a second case that some say is more disturbing and more relevant to the meeting.

On January 11, a 6-year-old girl from Colorado received FluMist, a flu vaccine, and about a week later “became weak with multiple episodes of falling to ground” and “difficulty walking,” according to a case report filed with federal health officials and obtained by The New York Times.

The girl grew increasingly weak and feverish and “became more limp, appears sleepy, acts as if drunk,” the report said. She was hospitalized and underwent surgery and was finally withdrawn from life support. She died on April 5, according to the report.

Both the 9- and 6-year-olds suffered from mitochondrial disorders, a spectrum of genetic diseases that have received almost no attention from federal health officials. The 9-year-old, Hannah Poling, was 19 months old and developing normally in 2000 when she received five shots against nine infectious diseases. Two days later, she developed a fever, cried inconsolably and refused to walk. Over the next seven months, she spiraled downward, and in 2001 she was given a diagnosis of autism.

No one knows whether vaccinations had anything to do with the girls’ health problems, and the scientific significance of individual cases is always difficult to assess. But suggestions that mitochondrial disorders could be triggered or worsened by vaccinations, and that the disorders may be linked to autism, spurred Sunday’s meeting and has brought the disorders sudden national attention.

Those scheduled to present at the meeting who were contacted by The Times said that they knew nothing of the Colorado case.

“I haven’t heard about this case,” said Dr. Thomas R. Insel, director of the National Institute of Mental Health and the day’s first speaker.

Dr. John Iskander, acting director of the immunization safety office at the Centers for Disease Control and Prevention, said that his group studied the Colorado case closely but did not discuss it with those presenting at Sunday’s meeting and had no plans to present the case to the conference, although he and members of his group will attend.

Dr. Iskander notes that those called to the meeting are not vaccine safety experts, but, again, experts in mitochondrial disorders. The Colorado girl had, too, “not experienced any problems with her previous vaccinations and was relatively old at the time of her diagnosis” with mitochondrial disorder and there is no mention of autism in her case. Dr. Darryl Devivo, a professor of neurology and pediatrics at Columbia University, who is a leading expert in the field of mitochondrial disorders, notes that “‘After caring for hundreds of children with mitochondrial disease, I can’t recall a single one that had a complication from vaccination.’” While it’s noted that a test to screen for mitochondrial disorders is not sufficiently “’sensitive or specific,” Dr. Insel notes that discussion about these, vaccines, and autism is needed; he says:

“We’re talking about two things we don’t understand very well, mitochondrial disorder and autism, and putting them together. It’s like two drunks holding each other up.”

More questions for sure and probably more calls of controversy will be heard, too.

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Comments

17 Responses to “Experts to Hold Meeting on Mitochondrial Disorders”
  1. Um gotten’s willen for F***s sake

    Wer bin the sanity police?

    Insel Schminsel bin einen Insel fur ihn.

  2. N’eer mind iskander and the gordian knot but that is classicism gone one too far :)

  3. Marla says:

    We have had M genetic tested and mitochondrial tested since many of her symptoms would lead one to believe she may have a mitochondrial disorder. I think this kind of testing is helpful. I wish someone would have encouraged us to do it years ago. If enough people were tested we might be able to get more scientific answers about Autism rather than people basing things on their “feelings” and fickle “beliefs”.

  4. But it is the new black innit?

    Marla me old pal me old beauty get yerself tested and for sure if you ain’t a mytochondriac there is sommat lacking.

  5. I was a bit puzzled to see that quote from Insel—-the reference to “two drunks”???????

  6. MikeO'Neill says:

    Kinda underlines how little is known.
    Kristina, I somehow stumbled on your blog researching my own sons ASD/PDD/mito/?? and liked what I had read — then went to your most recent article was outraged about the airplane thing. Thought Id let you know who the random new commenter was.
    After reading about the Airline thing I had to have a few drinks myself. Perhaps NIMH could study anxiety caused by the airline industry…I digress..
    Thanks-MO

  7. Hi, thanks! I haven’t known what to think seeing the comment numbers on the airline story grow and grow—-I’d just recently had a tough time with my son in the airport (not on the plane; he was so exhausted after an hour plus of crying that he fell quickly asleep, with the aid of some melatonin).

    Maybe NIMH could study anxiety caused in random bystanders when they see autistic children having a tough moment and think of ways for them (the bystanders) to calm down…….

    A very big welcome—-

  8. daedalus2u says:

    I have finally posted my blog on mitochondria dysfunction. It won’t let me post the link.

    Sorry it is so long, but I tried to keep it as simple as possible and left a lot out.

  9. Albert says:

    I think Insel needs media training.

  10. Thorton says:

    Mitochondrial problems or not, what about Julie Gerderding’s report that the CDC was compromised and not done well?

    For a blog that often posts about the latest vaccine news this seems to be a a post that should have been written.

    http://evidenceofharm.com/VaccineDataLinkReporttoCongressFinal.pdf

    http://www.huffingtonpost.com/david-kirby/cdc-vaccine-study-design_b_108398.html

    http://www.huffingtonpost.com/david-kirby/cdc-vaccine-study-used-fl_b_108462.html

  11. @Thorton,

    Hi, the post about that is here.

  12. Thorton says:

    Ah yes. Thanks. I had searched but was spelling Dr. Gerberding’s name incorrectly.

  13. Regan says:

    Mitochondrial disease discussion in Indianapolis
    Sullivan, LB/RB

    Discussing,
    Proceedings: Mitochondrial Encephalopathies: Potential Relationships to Autism?
    National Institute of Neurological Disorders and Stroke

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