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. 

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.

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.

The anti-vaccination world, always sniffing around stories in vain attempts to make illogical links to vaccines, tried to link the LeRoy illnesses to HPV vaccines. That was so easily ruled out mainly because we actually didn’t have information that all of these kids had the HPV vaccine. 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.

Best Scientific Conclusion

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.

Pies further opines, “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.”

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.”

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.”

Postscript

Ah, but it never ends. This week, my articles about the LeRoy mystery illness, here, herehere, and here, started to get massive hits from search engines. It caught me by surprise.

So, I did some further investigation, and all I could find was:

  • An article in Infowars (a conspiracy website filled with science denialism and ridiculous claims) that rehashed old news information, and didn’t even get it right about Erin Brockovich’s current involvement status. Which is she isn’t involved after finding nothing.
  • A documentary on Australian TV about the mystery, which, according to those who saw it, also concluded that it was conversion disorder or hysteria.

As of today, the statement above from the LeRoy School District still stands. It’s conversion disorder.

Key citations

The Original Skeptical Raptor
Chief Executive Officer at SkepticalRaptor
Lifetime lover of science, especially biomedical research. Spent years in academics, business development, research, and traveling the world shilling for Big Pharma. I love sports, mostly college basketball and football, hockey, and baseball. I enjoy great food and intelligent conversation. And a delicious morning coffee!