Update to the LeRoy (NY) teenagers’ mystery neurological illnesses

oatka-creek-leroy-nyOver the past couple of years, I had written a few articles about a mystery neurological ailment that had struck about 20 teenagers, most of whom were students in high school at that time in LeRoy, NY, a small town about 30 minutes from the city of Rochester. The teens suffered tics and other neurological symptoms that seemed to mimick Tourette syndrome, but was never diagnosed as such.

None of the teens had ever exhibited other symptoms of a neurological deficit, and most of them have subsequently recovered. Two new cases appeared in 2013, but none since.

Numerous individuals, including officials of the Monroe County and New York State Departments of Health, attorneys, antivaccination cultists, and others whose speculation ran from useful to outright delusional.  Many individuals who “diagnosed” the teens without actually ever meeting them (proper diagnosis of neurodevelopment disorders requires one on one assessment, not the famous “let’s diagnose medicine over the internet).

The various failed hypotheses

First up, Erin Brockovich, yes THAT Erin Brockovich, decided to get involved in the story in early 2012. Now, it made some sense, since there was potential environmental disaster, because there had been a train wreck nearby in the early 1970’s which spilled toxic chemicals. However, it appears that Brockovich never really found anything and was blamed, partially, for contributing to the hysteria.

erin-brockovich-wikimedia
The real Erin Brockovich. Credit to Wikimedia commons.

By April 2012, 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.

Soon thereafter, the New York State Department of Health also 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 Dr. Rosario Trifiletti made an internet diagnosis of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections), apparently by analyzing some laboratory data without actually meeting and reviewing medical records of the LeRoy teens. He presented his diagnosis on the Dr. Drew show, not in a peer-reviewed publication–I don’t even put “explaining your scientific data on the Dr. Drew show” anywhere on the hierarchy of scientific evidence, but it’s probably right at the level of Natural News. 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 (group A streptococci) 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, PANDAS remains controversial, and is certainly not backed by any sort of scientific consensus, so using it to “diagnose” these teenagers from afar is rather absurd.

The antivaccination world, including the group, Age of Really Not Caring About Autism, who are always sniffing around stories to invent ludicrous ties between any neurological disorder and vaccines, attempted to link the LeRoy illnesses to HPV vaccines. And a photo of crop circles.

And then, using their less-than-grade-school medical knowledge, added a dollop of junk medicine to their review of the situation. Their logical fallacies and bad science were so easily ruled out mainly because we actually didn’t have information that all of these kids had the HPV vaccine, one of the safest vaccines on the market. But then we got real data on vaccinations, we found out that not all of the individuals got the vaccine, and it was up to 4 years between the vaccination and the onset of “symptoms.” More bad information.

A real physician brings real medical science

One of the best analyses, by 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 observed that, “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 stated that:

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 blog, “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. It is 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 Central School District:

As has been communicated, the District has been working closely for months with numerous medical professionals, the State Department of Health, the State Department of Environmental Conservation, and the Environmental Protection Agency. All of these agencies and dozens of professionals from these agencies have assured the District that the school is safe.  There is no evidence of an environmental situation or infectious cause.  In addition, to help assist the District with assessing all aspects of this situation, it hired its own independent environmental expert to conduct a review of the findings and offer alternative approaches if needed.  This was done not because the District questioned the state medical professionals or federal agencies, but to help reassure the community. There are also some who are attempting to marry the 1970 derailment to the school when in fact the plume has been shown as moving in the opposite direction some three miles away.
The Le Roy community should take assurance that the Department of Health concluded extensive reviews of both the epidemiology and the clinical evaluations and found no evidence of environmental or infection as the cause of the students’ illness. An environmental exposure would affect many people. The treating physicians ruled out PANDAS.  The school was tested for Volatile Organic Compounds (including TCE) by an independent firm. The school is served by a public water system. The Gardasil vaccine was ruled out because many of the girls did not receive the vaccine.  The Department of Environmental Conservation reaffirmed the evaluation that there is no evidence of environmental factors.
The District will certainly welcome input from outside experts if they choose to offer it in a professional and constructive manner.  It will rely on its own expert as well as counsel from the Department of Health, DEC and EPA as to whether any further testing is deemed appropriate.  However, in the event that it is recommended, it will be done with a specific plan based upon all available information and accepted scientific protocols. The District wants to be clear that it has confidence with respect to the conclusions of the Department of Health based upon its comprehensive review of this situation as well as the assessment of the physicians at the DENT Neurologic Institute.
The Le Roy Central School District and the Leroy community want what is best for the children in the schools. Unfortunately, the endless speculation without factual basis is creating an extreme level of anxiety and concern.  Students are unable to focus on learning. The constant attention has had a negative impact on the recovery of some of the students who are directly affected, many who were improving and whose symptoms have now become exacerbated.  The District knows this has been an emotionally hard situation on the community and everyone hopes for the speedy recovery of its students.

A new novel by Megan Abbott, The Fever, takes a fictional look on the conversion disorder amongst girls in a small town. The novel was inspired by a news show that Ms. Abbot was watching that interviewed some of the girls. In the novel, the protagonist, a single father, who was seeking the “real cause” of the afflictions, going through the same dead ends as happened in real life.

After all of the various hypotheses, what finally worked was drastic–the teens were treated isolated from other afflicted teens. Dr. Laslo Mechtler, who treated 15 girls at specialist clinic at a neurological clinic in Buffalo, NY claimed that the girls were “80 to 90% cured” by June 2012. And most of them eventually graduated from high school.

“When the girls were interviewed on television they’d say things like, ‘I had a perfect life, nothing was wrong with me’,” stated Abbott in an interview. “They wanted to be strong and not be the girl with the problems.” However, that need for perfection may have also exacerbated their symptoms, according to an article in the New York Times Magazine which indicated that some or most of the girls were stressed by the normal activities of being a teenager in high school. And that lead to them falling ill.

Of course, the media interest, and many of the false claims, seems to have aggravated the symptoms in the teens since it every day they were reading about a new cause or new cure. Dr. Mechtler observed that,

We noticed that the kids who were not in the media were getting better; the kids who were in the media were still symptomatic. One thing we’ve learnt is how social media and mainstream media can worsen the symptoms in these cases.

Occam’s Razor tell us that one should never make more assumptions or assume more causes than the minimum necessary to solve a problem or find a cause for something. The simplest diagnosis was conversion disorder for the LeRoy teens, but people got involved, including those who had no direct medical involvement with the teens, who screamed that it was vaccines, or environmental toxins, or whatever else. But once real psychiatrists with real interactions with the teens were given enough time, they diagnosed the issue and provided treatment that gave back the kid’s lives.

And that’s how medicine works. Not by yelling and screaming on TV or in the news. But by real evidence-based medicine.

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!


  • Adhraf Ahassan

    DuPont to face first trial over C-8 exposure 3,500 plaintiffs who have sued DuPont in federal court in Ohio, saying they contracted one of six diseases linked to perfluorooctanoic acid, known as PFOA or C-8. Bartlett said she developed kidney cancer from contaminated water.

  • neveraname

    I’m really saddened by doctors who jump to “Conversion Disorder” when they truly have no idea at all what the physical facts are. Some viruses, bacteria and fungi cross the blood brain barrier. I, myself was told by doctor after doctor that the crushing abdominal pain I had “must” be conversion disorder.
    It turned out to be one of the acute porphyria. It took almost my whole life to get that diagnosis.
    I come from a medical family and this was the basis of the “conversion disorder” diagnosis.
    A couple years ago I had a limp limb. Just one. EMGs were done. Everyone baffled. Finally a DX was made by my neurologist who knew of Dr. Triffaletti’s work. The illness was coxsackie virus. That limb is still so weakened that it dangles, though I can use it a bit. Coxsackie is a polio virus! If my neurologist had been a lesser man the DSM-V’s “somataform disorder” would have been used against me. That I had a sore throat and low grade fever when my limb was dragging never meant anything to these doctors, no far easier to go all the way back to the idiocy of Freud if you can’t figure out what’s wrong. And to say that the isolated teens improved could only mean they were really media hounds? My god, are we that dumb? Of course some of them got better. A person’s immune system is highly individual. Did their mother take antibiotics while pregnant? Were any of them born via caesarian? So many factors. I would think (my humble opinion as a veteran of some of the most famous doctors and med systems in the US) that Triffaletti is most likely to be accurate, because he’s actually used his mind instead of jumping to “hysteria”! And we’re to trust bureaucrats from the State as the last word? That would be truly crazy, as if they would have pure motivations….
    And Conversion disorder is a lazy doctor’s diagnosis, and completely ridiculous.
    This is not an ad hominem attack, only an observation, but you bill yourself as a skeptic, but I notice that “skeptics” are almost always unable to ever consider that there might be unknowns at play.
    “Skeptics” are the least likely to be imaginative thinkers.

  • Lynne97030

    There are still folks who want some explanation other than conversion disorder for the sad situation that happened in Salem, MA some years back. Similarities between these secular symptoms and those shared by some fundamentalist congregations? Does having an “approved outlet” like a church ritual help release something that otherwise manifests in pseudo-neurological behaviors?

  • Eric Bohlman

    It just hit me that if this had happened in, say, 1987, the symptoms would likely have been attributed to sexual abuse committed by a Satanic pedophile ring and we’d just now be reading about the convictions being overturned. The way mass psychogenic illness manifests is quite sensitive to the “temper of the times”.

    I was about to say that if the kids had been mostly black, the symptoms would have been attributed to drug use, but then I caught myself and remembered that if the kids had been mostly black, the story would probably never have gained anything but minimal local attention.

  • Megan Snow

    I’ve been going thru this already for 7years, it started when I was fishing at the gorge a seth green in Monroe county an yes it’s very painful ,,I just found out about the school in Leroy yesterday at an appointment I’m so glad that I found out about this ,at least I don’t feel to alone ,I had an appointment at general hospital last month he said I need a physiatrist not a neurologist ,I felt like #% ,an now I’m going for a second opinion ,,,wish me luck ,,

  • But..but… toxic toxins that toxify der kemikills.

    Heh.

    On a more serious note, this should be all over the national media (not the girl’s, or location specifically), and shown that science works. But, alas, no bleeding, no leading. (sigh)

  • Well that was a fascinating read

  • Brittney Shine

    Ghost in the Shell: Stand Alone Complex comes to mind. Quite a bit, in fact, when it comes to any knee-jerk reaction by the general public, both for the patients of the conversion disorder and the quacks that tried to jump on the hype train.

    • That was my point. Once the real physicians with real backgrounds with real interaction with the actual patients got involved, they diagnosed and treated fairly quickly.

      Quacks drive me nuts.

    • Warren Lauzon

      One thing I just love and hate at the same time is all the “experts” that show up on all the various media whenever something happens. Doesn’t matter much what it is, there are always more “experts” than there are solutions. But the one common key is that those experts are nearly always wrong.

      My own special hobby is following North Korea, have been for many years. And every time they shoot off another rocket, the media gets filled up with total idiots. Most of them could not find Pyongyang on a Google map, because they probably could not even spell it right – yet they get air time.