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. It’s been five years, so let’s update the news about the LeRoy neurological disorders.
I first wrote this article in 2013, yet it continues to be one of the top read articles on this blog. I’m not sure why, it may be because the outbreak was blamed on many factors that cross paths with internet conspiracies about health. Like vaccines.
Since this article about the LeRoy neurological disorders is so popular, I decided to update it (and clean up the huge number of broken links). I have also looked at the recent news about “outbreak,” and I will post links to some of the more intriguing hypotheses here.
Entering the Way-back Machine, let’s see what has happened in the past, just to catch everyone up.
LeRoy neurological disorders rejected hypotheses
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.
As I reported in April, the EPA found nothing:
…the EPA has tested the groundwater around the high school, and it shows no contaminants including tricholoroethylene (TCE) that was spilled from a 1970′s train derailment nearby. Whatever the cause of the symptoms are, it is probably not pollutants.
The New York State Department of Health found nothing:
The findings in this report do not identify a need for the school district to restrict any school-related activities or take any special health-related precautions because of this situation. The investigation did not find infectious or environmental causes for these illnesses. NYSDOH will continue to work with National Institutes of Health (NIH) to provide interested families with an independent expert third-party evaluation. Our primary concern continues to be the well-being of the affected students and their families.
PANDAS and the LeRoy neurological disorders
Then there was the diagnosis of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) made by Dr. Rosario Trifiletti, apparently by analyzing some laboratory data over the internet. He presented his diagnosis on the Dr. Drew show, not in a peer-reviewed publication. A few journals have rapid communications which would have allowed him to rapidly present newsworthy data, so there’s no excuse to not have done this properly. Others, like Dr. Susan Swedo, who is the branch chief of pediatrics and developmental neuropsychiatry at the National Institute on Mental Health, are skeptical of Trifiletti’s diagnosis:
For one thing, PANDAS doesn’t usually occur in clusters. Indeed, Swedo says that she is “not aware” of any epidemics of PANDAS ever occurring. The last epidemic of illness following strep infections — a cluster of rheumatic fever, which is an inflammatory disorder — happened in the 1980s. (Both PANDAS and rheumatic fever are caused by overzealous immune responses to infections; immune cells mistakenly attack particular organs or tissues, in addition to the infectious agents.)
Furthermore, a recent review of research in PANDAS came to this conclusion: “Despite continued research in the field, the relationship between GAS and specific neuropsychiatric disorders (PANDAS) remains elusive. It is possible that GAS infection may be but one of the many stressors that can exacerbate tic/Tourette’s or OCD in a subset of such patients.” In other words, this “diagnosis” never had much going for it.
One last point – Dr. Trifiletti has entered the anti-vaccine world, attempting to tie PANDAS, vaccines, and autism. In the attempt to blame vaccines for autism (for the millionth time, they aren’t linked), any port in the storm is adequate, including PANDAS. There is no scientific evidence that PANDAS actually exists, there’s no scientific evidence that PANDAS is linked to autism, and there is no scientific evidence that PANDAS and vaccines are linked to autism.
Speaking of vaccines
The anti-vaccination world, including the pseudoscientific website, Age of Autism, who are always sniffing around stories in vain attempts to make illogical links to vaccines, tried to link the LeRoy neurological disorders to HPV vaccines. And added a junk medicine review of the situation.
Then another anti-vaccine website jumped into the fray with their own take on how the LeRoy neurological disorders were linked to Gardasil, the HPV cancer preventing vaccine. There must be some rule in the anti-vaccine world – blame it on Gardasil before any other vaccine.
This link was easily ruled out, mainly because we actually didn’t have information that all of these kids had the HPV vaccine (or any common vaccination). But then fellow blogger SkewedDistribution easily destroyed the illogical beliefs of the anti-vaccination cult, mainly because not all of the individuals got the vaccine, and it was up to 4 years between the vaccination and the onset of “symptoms.” I’m not sure if SkewedDistribution laughed hysterically when he wrote that article, but I did when I read it.
Chronic Lyme disease
Chronic Lyme disease (CLD) is a belief that antibiotics do not destroy the Lyme disease, and it hides out somewhere causing a lot of issues. Chronic Lyme disease does not exist – it is essentially a scam for some healthcare providers to take money from those who believe they are suffering from it. And those treatments can be seriously dangerous.
However, long term CLD symptoms seem to exist in some individuals, even after the actual Lyme disease has been successfully treated. So calling it “chronic Lyme disease” is inaccurate.
In the search of a “theory” to explain the LeRoy neurological disorders, CLD was implicated. However, Dr. William Shaffner, an infectious disease researcher and chair of Preventive Medicine at Vanderbilt University, said this about CLD and the LeRoy teens:
The short answer is you won’t find that in medical texts. Since Lyme disease has been studied with enormous care and thoroughness, the literature on Lyme first described 35 or 40 years ago now fills half a room. Its clinical manifestations are extremely well known. I think this is an unlikely cause of this single girl’s illness.
We can conclude that chronic Lyme disease does not exist (at least as an infectious disease), and it probably has nothing to do with the LeRoy neurological disorders.
So where does this leave us?
Ronald Pies, M.D., in his blog post, “Hysteria” in LeRoy: A Skeptic’s View, has stated that “my colleague and CNN mental health expert, Dr. Charles Raison, recently reviewed this story in a thoughtful commentary. He concluded—quite reasonably—that ‘conversion disorder is a plausible explanation for the tics, verbal outbursts, and apparent seizures afflicting this group of 12 or more adolescent females.” Dr. Pies also makes a thoughtful analysis of the diagnosis of conversion disorder, which explains “what it is”, but fails miserably at explaining “why” or what causes it.
Parsimony would lead us to conclude that the simplest diagnosis is the best, which, in this case, is conversion disorder. Whenever something like this cluster occurs, many individuals attempt to invent a complex diagnosis, sometimes to further their own causes. As frustrating as it might be, conversion disorder may make sense, and that will help these individuals get the appropriate psychological and psychiatric help.
Dr. Pies also concluded:
Whatever the ultimate cause or causes of conversion, it seems clear that this condition does not represent “malingering” or an attempt to deceive others. Unfortunately, individuals diagnosed with conversion symptoms are often written off as “crocks” or “fakers” and denied a thorough medical evaluation. For some patients with apparent conversion symptoms, “hysteria” is indeed the last diagnosis they are likely to receive. In time, we may discover a number of distinct causes for the symptoms experienced by the LeRoy students, varying from person to person. For now, we need to keep an open mind about whatever is afflicting these young people, and treat them with respect, understanding, and patience.
In other words, there is a serious issue here, not one we should ignore because these young men and women were faking it. In the words of SkewedDistribution again, “The one thing about the LeRoy tics that remains clear is that the majority of the officials involved remain convinced that the phenomenon was caused by conversion disorder.”
Dr. Jennifer McVige, a pediatric neurologist, who has been treating most of the LeRoy students, said “four of her 12 patients are symptom-free and another four or five are nearly at that point.” Dr. McVige and the state Department of Health agree on a diagnosis of mass psychogenic illness for the Le Roy students. The LeRoy neurological disorders are a psychological disorder, similar to conversion disorder, linked to stress in the patients’ lives. It was not PANDAS, environmental problems, vaccines, or alien visitations.
I think we can close out this story with a statement from the LeRoy School District:
With the beginning of the new school year, we are asking all media outlets and other individuals, to please respect that the Le Roy School District will no longer be commenting on student health issues within our schools. We have been warned by medical experts that the continued media attention on the Le Roy School District and greater community runs the risk of negatively impacting the students previously diagnosed with conversion disorder that have recovered and can also serve as a catalyst for new symptoms to develop.
And in the immortal words of Forrest Gump, “And that’s all I have to say about that.”
Update October 2013
I guess that’s not all I have to say about that. Two teenagers in another Upstate New York town, Corinth, have come down with the so-called Tourette-like symptoms. One parent sent their child to UCLA to be tested (wow that’s a long trip from a state that has world-class medical research facilities). They found nothing. In lieu of any physiological or obvious psychiatric issues, maybe the parents ought to read the various articles about LeRoy. Here come the conspiracies.
Update November 2017
It’s been five years since I originally looked into the LeRoy neurological disorders. And it’s been four years since I last updated this article. Let’s check if there’s any recent news that will change the conclusions from Drs. McVige and Pies.
And I found nothing new, except occasional articles that claim that science hasn’t uncovered the cause. Except that it has.
Ironically, despite the thorough debunking of the hypothesis, Erin Brokovich’s focus on the train derailment 47 years ago that dumped toxic chemicals has lead to environmental agencies, like the EPA, to start cleaning up the waste. But again, it had nothing to do with the LeRoy teens. So that’s a good thing.
Right now, we have no other evidence that would lead a reasonable scientist to an alternative diagnosis to conversion disorder. It’s not related to vaccines. It’s not related to environmental issues. It’s not related to the nonexistent chronic Lyme disease. It was not PANDAS.
- Shulman ST. Pediatric autoimmune neuropsychiatric disorders associated with streptococci (PANDAS): update. Curr Opin Pediatr. 2009 Feb;21(1):127-30. doi: 10.1097/MOP.0b013e32831db2c4. Review. PubMed PMID: 19242249.