Updates: LeRoy mystery neurological illnesses
This article is an update of one I wrote several months ago. I had presumed the story had ended. It hadn’t.
Background
In spring 2012, I had written a few articles about a mystery neurological ailment that had struck about 20 teenagers at a high school and surrounding area in LeRoy, NY, a small town about 30 minutes from the city of Rochester. They suffered tics that mimicked Tourette syndrome, but was never diagnosed as such. Most of them have recovered, although two new cases have appeared.
Medical and scientific findings
First, Erin Brockovich, yes THAT Erin Brockovich, decided to get involved. In an announcement in August, they stated that they found nothing:
There is no link specifically that I can draw to environmental exposure because there are so many environmental exposures that occurred at the high school.
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HPV–early vaccination maximizes effectiveness
Human papillomavirus (HPV) is a virus from the papillomavirus family that is capable of infecting humans. Like all papillomaviruses, HPVs establish productive infections only in keratinocytes of the skin or mucous membranes, making it easily transmitted sexually or through other intimate contact. While the majority of the known types of HPV cause no symptoms in most people, some types can cause warts (verrucae). HPV types 16 and 18 cause approximately 70% of cervical cancers, and cause most HPV-induced anal, vulvar, vaginal, and penile cancers. The HPV quadrivalent vaccine, also known as Gardasil (or Silgard in Europe), is marketed by Merck. The vaccine prevents the transmission of certain types of HPV, specifically types 6, 11, 16 and 18.
Although the safety of HPV vaccine has been thoroughly vetted for safety in studies with large cohorts, the long time period (up to decades) from infection to a diagnosis of an HPV-related cancer has left questions about how to maximize effectiveness of the vaccine which required further research.
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Mark Crislip’s Dumb Asses and Vaccines
It’s getting close to flu season, and it’s time to get your flu shot. Of course, there are myths for why people won’t get their flu shots. All of them are amusingly bad.
Last fall, Dr. Mark Crislip published A Budget of Dumb Asses (requires a Medscape account) that takes on anti-science with a whole new level of snark. I have part of it here for you, thanks to Biodork’s (great name) Time for your flu shot! It’s all about getting (or not getting) the flu vaccination, but you can replace flu with any other vaccination. Apparently, he wrote it for health care workers, but hey, I think it works for patients too!
Mark Crislip starts out his snark with a quick statement about not getting a flu shot. You might be a dumb ass, if you’re unwilling to get the vaccine:
I wonder if you are one of those Dumb Asses who do not get the flu shot each year? Yes. Dumb Ass. Big D, big A. You may be allergic to the vaccine (most are not when tested), you may have had Guillain-Barre, in which case I will cut you some slack. But if you don’t have those conditions and you work in healthcare and you don’t get a vaccine for one of the following reasons, you are a Dumb Ass.
Whatever happened to the LeRoy mystery neurological illnesses?
In spring 2012, I had written a few articles about a mystery neurological ailment that had struck about 20 teenagers at a high school and surrounding area in LeRoy, NY, a small town about 30 minutes from the city of Rochester. They suffered tics that mimicked Tourette syndrome, but was never diagnosed as such. Most of them have recovered, although two new cases have appeared.
Entering the Way-back Machine, let’s see what has happened.
First, Erin Brockovich, yes THAT Erin Brockovich, decided to get involved. In an announcement in August, they announced that they found nothing:
There is no link specifically that I can draw to environmental exposure because there are so many environmental exposures that occurred at the high school.
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Large study supports safety of Gardasil HPV vaccine
A study published in the current online issue of Archives of Pediatrics & Adolescent Medicine affirms the safety of the HPV quadrivalent vaccine, also known as Gardasil (or Silgard in Europe), is marketed by Merck. The vaccine prevents the transmission of certain types (pdf) of human papillomavirus (HPV), specifically types 6, 11, 16 and 18. HPV types 16 and 18 cause approximately 70% of cervical cancers, and cause most HPV-induced anal, vulvar, vaginal, and penile cancers.
The large study, which included nearly 200,000 young females who had received the vaccine, found that the vaccine was only associated with same-day syncope (fainting) and skin infections in the two weeks after vaccination. These findings support other large studies that also found the vaccine safe and an appropriate strategy to prevent cervical cancers. The authors stated that, “this study did not detect evidence of new safety concerns among females 9 to 26 years of age secondary to vaccination with HPV4.”
In an article in Science News, lead author Nicola Klein, MD, PhD, co-director and research scientist at the Kaiser Permanente Vaccine Study Center in Oakland, Calif, stated that,”taking into account all the analyses, subanalyses and relevant medical record reviews, an independent safety committee noted that there may be an association between HPV4 vaccination and same-day syncope, as well as skin infections during the two weeks after immunization.” Fainting is not an unexpected result with vaccinations reported the authors, because injections of all types are correlated with fainting.
The study’s strengths, a large, ethnically diverse population who received a total of nearly 350,000 HPV4 doses; an integrated health care delivery system (Kaiser-Permanente) that assured complete or near-complete medical information and follow-up; and a “pre-specified, validated, clinically meaningful system to categorize all outcomes.”
This study is powered in a way to find causal links to vaccinations as opposed to anecdotes, since patients are closely monitored after the vaccinations. The results strongly confirm the safety of this important vaccine and set aside the rumors and gossip that have floated across the internet about Gardasil.
Let’s repeat what was found in this study. 350,000 doses given. The only adverse reactions were fainting, an expected outcome from any needle injection, and skin infection, another expected (and preventable) outcome. So, in a well controlled study, where the patients could be observed carefully in a modern healthcare environment, no dangerous adverse events were observed. A vaccine that can prevent cancers–dangerous, life-threatening cancers–is safe.
So, who are you going to believe, a website that publishes anecdotes, or worse yet, lies? Or a huge, scientific study published in the Journal of the American Medical Association, one of the premier medical journals in the world? Unless you prefer pseudoscience, the answer should be easy.
Gardasil Saves Lives.
Republican governor Nikki Haley is anti-vaccine and pro-cancer
The Charleston (SC) Post and Courier reports that Republican South Carolina Governor Nikki Haley vetoed a bill that would have provided sixth- and seventh-graders with information about the HPV vaccine. The vaccine would have been provided at no cost to all seventh-graders whose parents allowed them to have the vaccination. The bill had strong support from both Democrats and Republicans in the South Carolina legislature.
The HPV vaccine provides immunity to men and women against several types of human papilloma virus which is associated with with over 20,000 cancers in women and 11,000 cancers in men every year. Governor Haley defended her veto by calling the bill unnecessary and a “precursor to another taxpayer-funded healthcare mandate,” the Charleston Post and Courier reports.
State Rep. Bakari Sellers (D-Bamberg, S.C.) sponsored the bill and blasted Haley’s move, calling her decision one that…
puts her own selfish political ambitions ahead of the people of South Carolina. This bill had bipartisan support and gives optional education and preventative vaccines to adolescents in an effort to thwart cervical cancer. This is a common sense approach to a very serious problem. To call this measure unnecessary is demeaning and insulting to the heroic women who fight this cancer everyday. I am deeply disappointed that politics once again has prevailed over women’s health.
In 2007, Haley actually co-sponsored a bill that would provide mandatory HPV vaccinations. It failed to pass through the legislature because it failed to provide opt-outs, which was corrected in the 2012 version.
Let’s be clear here. Haley did not veto this bill because of bad medicine or bad science. She vetoed it purely for political expediency and by doing so, she stands firmly against a simple inoculation that would prevent a deadly cancer. This is not a political issue, it is an anti-cancer issue.
Vaccines save lives. I guess Nikki Haley doesn’t understand that! Maybe she’ll provide cigarettes for free to the school children of South Carolina.
Anti-vaccine lunacy–more lies about Gardasil
One of the hallmarks of pseudoscience is an over-reliance on confirmation rather than refutation of a hypothesis. The anti-vaccine crowd are well-known for this particular violation of the scientific method. As discussed previously, science works on refutation–creating experiments that might actually disprove a hypothesis as a method to develop evidence in support of it. The anti-vaccination crowd actually hypothesizes (but not in a scientific sense) that a vaccine or set of vaccines was the causal factor in some side effect (autism, death, or whatever else), then they should establish an experiment (double-blinded of course) that would refute that hypothesis. If at some point, the data cannot refute it, then the anti-vaccinationists would have supporting data for their particular supposition.
But instead of actually performing experiments (which cost money, which may show that they are wrong, or which might not be ethical), they resort to mining data to prove their point. Data mining is dangerous, because confirmation bias, that is, finding information or data that supports a belief while ignoring all other data that does not, makes the data suspect or even useless. So, in that vein, the anti-vaccinationists often mine data from any database they can find, such as the Vaccine Adverse Event Reporting System (VAERS), which is a program for vaccine safety, managed by the Centers for Disease Control and Prevention (CDC) and the Food and Drug Administration (FDA). VAERS functions as a post-marketing safety surveillance program (similar to other programs for almost every regulated medical device and pharmaceutical) which collects information about adverse events (whether related or unrelated to the vaccine) that occur after administration of vaccines. VAERS has numerous limitations, including lack of scientifically designed questions, unverified reports, underreporting, inconsistent data quality, and absence of an unvaccinated control group. VAERS is basically a collector of information, but has limited value in making conclusions since it does not provide information that is obtained in a controlled manner. However, it does have some usefulness, in that certain trends may be spotted given enough time and data points.
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Why do Americans hate Gardasil?
In next week’s issue of Forbes, Matthew Herper, the magazine’s medical editor, penned the article, The Gardasil Problem: How The U.S. Lost Faith In A Promising Vaccine, an insightful analysis of why Gardasil, the vaccine for human papillomavirus (HPV), has not become as important to vaccination strategies as measles or whooping cough. All vaccines keep you alive, even if the disease does not appear to be scary. There’s a belief, especially amongst the anti-vaccination crowd, that measles is just a few spots, and there are few risks to being infected. The risk of severe complications is small, but significant.
On the other hand, the HPV vaccine does one thing and does it well–it prevents an HPV infection. Human papillomavirus, a sexually transmitted disease, causes 70% of cervical cancers, 80% of anal cancers, 60% of vaginal cancers, and 40% of vulvar cancers. It also prevents the majority of HPV caused oral cancers. In other words, these diseases are in a different league of danger. And they can be prevented.
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LeRoy neurological illness mystery–junk science–update
(Updated to add more information about the anti-vaccination lunatics weighing in.)
When I write postings here, I never search google for information or sources, I always go to trusted locations for my information. For example, if I read a news article on some interesting subject, I check with the original source, usually at PubMed, for medical articles, and the original abstract (at least) for other science articles. I click on nearly every outlink in postings that I read, to confirm whether the information presented is accurate. A google search is practically useless, especially for medical articles, because the amount of cruft and junk science makes it a challenge to sort.
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LeRoy teenage neurological illness mystery–junk science everywhere
When I write postings here, I never search google for information or sources, I always go to trusted locations for my information. For example, if I read a news article on some interesting subject, I check with the original source, usually at PubMed, for medical articles, and the original abstract (at least) for other science articles. I click on nearly every outlink in postings that I read, to confirm whether the information presented is accurate. A google search is practically useless, especially for medical articles, because the amount of cruft and junk science makes it a challenge to sort.
WordPress blogs (which I use) tells the user if a blog posting was searched on google (or Yahoo…does anyone use that anymore?) Apparently, my postings about the LeRoy (NY) neurological show up on google (but not that far up the list, so people must be digging), and I was kind of surprised. This led me to do something that I just vowed I wouldn’t do, I googled it.
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CDC makes recommendations on the use of HPV vaccine in males
The CDC’s Advisory Committee on Immunization Practices (ACIP) recommends routine vaccination of males aged 11 or 12 years with HPV4 administered as a 3-dose series (recommendation category: A, evidence type: 2§). The vaccination series can be started beginning at age 9 years. Vaccination with HPV4 is recommended for males aged 13 through 21 years who have not been vaccinated previously or who have not completed the 3-dose series. Males aged 22 through 26 years may be vaccinated.
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Activist Erin Brockovich looking into teens’ mystery ailment
Activist Erin Brockovich looking into teens’ mystery ailment – USATODAY.com
I keep running into this story in various locations on the internet. During the past few months, 15 teenagers, mostly students at LeRoy (NY) High School just outside of Rochester, NY, reported neurological symptoms that resemble Tourette’s Syndrome.
Erin Brockovich, namesake of the Julia Robert’s movie, is investigating whether a train wreck in 1970 that spilled 35,000 gallons of cyanide and trichloroeythylene (TCE) near the high school caused or partially caused the symptoms. Then we have anti-vaccination blogs that blames it on the HPV vaccine, Gardasil, of course, without one tiny little bit of evidence.
The school district has reported that there are no known environmental issues in the air and water. Given very strict privacy laws, we don’t know if there’s some other medical link (like HPV vaccine). Of course, if HPV vaccine or some other pharmaceutical were involved, it would be very curious that only a small, rural, upstate New York town would be involved.
TCE is a well known contaminant of groundwater all over the world. There is some evidence that TCE may be involved with Parkinson’s Disease, though the effects usually take many years.
Right now, there is no evidence that points in any direction. If you hear that it’s vaccines, you may as well blame alien abduction, because there’s no evidence for that either. Everything is just speculation.

