Neurologic Illness or Hysteria? A Mysterious Twitching Outbreak
It began in 2011, a “mysterious illness” among teenage girls at the high school in Le Roy, New York (Figure 1) (Asztalos 2011). Six cases were reported, then twelve, then fifteen and counting as the story captured attention across the United States and beyond (“Doctors baffled” 2012). The story’s development included significant coverage on NBC’s Today show and CNN’s Dr. Drew’s Lifechangers. I twice visited Le Roy (just fifty miles from my office) on behalf of the Skeptical Inquirer, to talk with parents and others involved, visit relevant sites, and otherwise investigate this strange outbreak.
Beginning with at least one case as early as May 2011 and increasing to twelve by early January 2012, the phenomenon originally struck only teenage girls, who exhibited the symptoms of a strange Tourette-like condition with tics (involuntary twitches) and uncontrolled verbal outbursts.
Tourette syndrome is an inherited neurological disorder, and it is not caused by environmental conditions. It is some three to four times more likely to affect boys than girls and tends to occur sporadically in a given population, so the odds against a dozen girls at one location suddenly developing Tourette syndrome are astronomical (Mink 2012; Tan 2012a). Indeed it was not that disorder that assailed the Le Roy teens.
But if not Tourette syndrome, then what could it be? Health professionals considered a variety of possibilities:
Autoimmune disorder. A Health Department report pointed to a lack of evidence for one touted theory, an autoimmune disorder known as pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS). While four of the six girls tested did have elevated levels of a strep antibody, the levels were not high enough to involve PANDAS. Besides, for a diagnosis of PANDAS to be made five criteria must be met, and not one of the Le Roy cases met all criteria (New York 2012; Orr 2012). Moreover, PANDAS occurs three times more often in boys than in girls (Swedo 2012).
Vaccines. Some persons suggested vaccines—especially the Gardasil human papillomavirus vaccine, which is given to young females to prevent cervical cancer and is now also approved for use by males—as a potential cause of the outbreak. However, according to a New York State Department of Health report, while seven of the twelve girls had received one or more injections of that vaccine, they were at different stages in the vaccination process; for six of the seven the onset of their symptoms came over a year after their last injection. Moreover, the scientific literature does not show any links between the Gardasil vaccine and tic disorders (New York 2012; Orr 2012).
Drugs. That the symptoms might be caused by something the students ingested—including stimulants, prescription drugs, or other substances—was discounted as unlikely by Jonathan Mink, chief of child neurology at the University of Rochester Medical Center. (Mink is also cochair of the Tourette Syndrome Association’s scientific advisory board.) Mink noted that it would take a significant dosage of a drug—whether prescribed or not—to cause tics, whereupon other behavior changes would become apparent (Mink 2012). The Health Department noted that toxicology screens for five of seven of the students were negative, while two were positive for prescribed medications (New York 2012).
Environmental causes. Some environmentalists, such as high-profile activist Erin Brockovich, have suggested that toxic substances may be responsible for the girls’ symptoms. In particular they have referred to a site some three-and-a-half miles away (outside the nearby village of Lime Rock) where, on December 6, 1970, a train derailment resulted in the spill of one ton of cyanide crystals (which were promptly removed) and 30,000 gallons of trichloroethene (TCE), which still contaminates the site (Environmental Protection Agency 1999) (Figure 2). Brockovich (2012) referred to reports of “an orange-yellow substance oozing up from the ground” in a Le Roy school field. I talked with one afflicted girl’s father, Jim DuPont (2012), who also called attention to the possibility of incomplete combustion of natural gas from four wells drilled on school property.
I spent more of my time on environmental concerns than on any other theory—speaking with parents, an environmental activist visiting from Toronto (Tarr 2012), an environmental tester (Rumrill 2012), and beleaguered school superintendent Kim Cox (2012a); twice visiting the toxic-spill site, where I met investigating U.S. Representative Kathy Hochul; and more. Ms. Cox exhibited grace under fire, especially at a raucous community meeting (Figure 3). She has worked for months with numerous medical professionals and other relevant agencies (the state’s Department of Health and Environmental Conservation and the U.S. Environmental Protection Agency). Professionals from these agencies provided assurance that the school is safe, and an independent firm is conducting ongoing research. So far, tests of air quality and drinking water confirm that conclusion (New York 2012; Holvey 2012; Cox 2012b; Tan 2012c). The alarming “orange ooze” was simply rust fungi, which is common to the Kentucky bluegrass sod used for the field. The Health Department’s report (New York 2012) concluded that “the occurrence of symptoms in only female students and the range of time of symptom onset are not consistent with an environmental cause.” Kim Cox (2012a) stressed that point to me, stating that environmental causes would not discriminate between girls and boys, that a wide range of people—younger students, more boys, teachers, staff—would also have been affected.
In time, neurologists diagnosed the students with conversion disorder, “a group of symptoms suggestive of organic disease but without an identified cause in a group of individuals with shared beliefs about the cause of symptoms.” Conversion disorder is, therefore, a psychological condition whose cause is, typically, “significant life stressors,” the brain “converting” severe mental stress into actual physical symptoms, such as blindness, paralysis, numbness, fainting, and mutism. While conversion disorder (formerly called “hysteria”) is the diagnosis for an individual, the group diagnosis is mass psychogenic illness (popularly called “mass hysteria”) (New York 2012, 7; Goldenson 1970, 260–63). Much additional evidence in the Le Roy outbreak appeared to confirm both individual and group diagnoses.
Of the twelve girls, three had previous medical illnesses associated with tics—one of them “a pre-existing Tourette’s diagnosis” (New York 2012, 4, 6). One of these could have served as an “index” case that produced subconscious mimicry in the other girls. Of the remaining eight (one girl did not seek medical attention), each was discovered to have had a major stress in her life—such as parents divorcing—according to a pediatric neurologist in nearby Batavia, Jennifer McVige, who has seen ten of the girls (Stobbe 2012). Not only had some of the teens’ own physicians diagnosed them with conversion disorder, but McVige and colleague Laszlo Mechtler, MD, also confirmed the diagnosis (Tan 2012b). Neurologists are able to distinguish between movements caused by neurological conditions and those due to conversion disorder. For example, one girl was observed in a video to have a flailing right arm that she was able to later use to carefully apply eyeliner (Tan 2012d).
Some of the parents, however, refused to accept the conversion disorder and mass psychogenic illness diagnoses. Jim DuPont (2012) told me that he instead suspected “a combination of things”—such as some students’ predisposition toward illness, as well as anything that could impair the immune system and, of course, any of the various environmental causes—was to blame. Another parent, Beth Miller (2012), told me that she suspected a toxin or other cause, possibly a strep virus. She said the authorities have not looked at other children who report migraines and stomach conditions. (To play Devil’s advocate, I suggested to her that probably some students at any school anywhere would exhibit some such common symptoms.) David G. Lichter, MD, a clinical professor of neurology at the University at Buffalo, observes that it is not uncommon for parents in such a situation to refuse to accept a psychological cause and to “doctor shop” for another diagnosis, which delays proper treatment (Tan 2012a). As for others, Mechtler notes that some will not accept such a psychological diagnosis because “they live a conspiracy life in a bioterrorist world” (qtd. in Tan 2012b).
Yet cases of conversion disorder and mass psychogenic illness are well known: in 2002, ten teenage girls at a rural North Carolina high school exhibited epileptic-like seizures and fainting spells. In 2007 some 600 girls at a Catholic boarding school in Chalco, Mexico, suffered fever and nausea and, in some instances, an inability to walk. Later in 2007, at least eight girls at a high school in Roanoke, Virginia, exhibited twitching symptoms like those that afflicted the girls in Le Roy. In none of these outbreaks was a physical cause found. Mark Hallett, MD, who helps field calls for the National Institutes of Health (NIH), states that the NIH averages two individual reports of conversion disorder per week. But while those cases are common, actual outbreaks involving several people are unusual. And why these outbreaks typically involve females is unclear. Some believe it is because of the manner in which girls are socialized to deal with stressful situations (Stobbe 2012). Those susceptible to conversion disorder tend to be “highly smart, vulnerable to suggestion, and very sensitive,” according to a child and adolescent psychiatrist (Tan 2012d).
Meanwhile the Le Roy numbers had increased. By February 2, as many as fifteen cases were reported, including one boy and a thirty-six-year-old licensed practical nurse and mother, Marge Fitzsimmons, whom I met at a community meeting at the school. She accepts her doctor’s diagnosis of conversion disorder (Schenek 2012). By February 4 the number had increased to eighteen students—still only one boy among them (Tan 2012c). (See Figure 4.) Added to this were reports of two girls with similar symptoms in Corinth, New York, some 250 miles away. Interestingly, the Corinth girls are members of a softball team that had stopped in Le Roy during a road trip in July 2011, though this was after one girl’s symptoms had appeared (Roman 2012). While two Le Roy students had reportedly recovered after treatment, a few others regressed somewhat following the publicity and controversy (Mrozek 2012).
Although cases like those at Le Roy sometimes provoke allegations of fakery (indeed one restaurant employee there told me she thought the girls were just looking for attention), most experts think otherwise. Using the analogy of stage fright—which can produce shortness of breath, nausea, and other physical symptoms—experts believe the patients have actual symptoms that they cannot consciously control (Tan 2012a; Stobbe 2012).
A preponderance of the evidence tends to corroborate the diagnosis of conversion disorder/mass psychogenic illness in the Le Roy outbreak: (1) Medical examinations of the students failed to show any organic disease; (2) expert scientific investigations of the school and its environs failed to disclose any credible infectious or environmental sources for the cases; (3) the sufferers are mostly females, and conversion disorder is more prevalent among females than males; (4) the diagnoses were made by physicians, including neurological specialists, who actually examined the patients; (5) neurologists noted the difference between patients’ imitative movements and those caused by an actual neurological condition; (6) three students had pre-existing illnesses associated with tics (one with a Tourette syndrome diagnosis), which could have sparked cascading cases of subconscious mimicry; (7) a bandwagon effect may be evidenced by the increased number of cases, the off-site case of an adult female, and the cases of two teenage girls in distant Corinth, New York; (8) students who accepted the diagnosis and treatment began to improve; (9) two students treated for conversion disorder were considered recovered; (10) overall, the Le Roy outbreak fits the profile of other cases of mass psychogenic illness that have been investigated elsewhere; and (11) the diagnosis has been supported by numerous knowledgeable medical and psychological professionals who reviewed the evidence.
Such an outbreak eventually runs its course. Lichter points out that suffering from a psychogenic illness does not mean that one is mentally deficient or otherwise unhealthy (Tan 2012a). It is important to understand that although the teens’ symptoms may have a psychological origin, they are nonetheless real and painful. According to psychologist Gail Saltz (2012), the sufferers “need a psychiatric or psychological treatment. Treatment does work.” And the neurologist Mechtler assured, “The bottom line is these teenagers will get better” (Jaslow 2012).
I am grateful to the many persons in and near Le Roy, New York, who assisted me in my efforts (including several who spoke with me confidentially). Thanks are also due my wife, Diana, CFI Executive Director Barry Karr, CFI Libraries Director Timothy Binga, Librarian Lisa Nolan, and others, including Roe Giambrone and my assistant, Ed Beck, for research assistance.
Asztalos, Jaclyn. 2011. Mysterious illness at Leroy High School. WKBW News (November 8). Available at www.wkbw.com/home/
Brockovich, Erin. 2012. Appearance on Anderson Cooper 360 on CNN, January 30 (cited in Michel 2012).
Cox, Kim. 2012a. Personal communication at press conference. February 4.
———. 2012b. Letter to community, January 31; address at community meeting, February 4.
Doctors baffled as Tourettes-like syndrome spreads. . . . 2012. Daily Mail (UK) (January 27).
Du Pont, Jim. 2012. Personal communication, February 4.
Environmental Protection Agency. 1999. Lehigh Valley Railroad Derailment Site, New York, report NYD986950251 (January 19).
Goldenson, Robert M. 1970. The Encyclopedia of Human Behavior, vol. 1. Garden City, NY: Doubleday.
Holvey, Mary Ellen. 2012. Public presentation as certified industrial hygienist (February 4).
Jaslow, Ryan. 2012. Mass hysteria outbreak reported in N.Y. town . . . cbsnews.com (January 19).
Michel, Lou. 2012. Brockovich’s efforts in Le Roy halted. The Buffalo News (January 31).
Miller, Beth. 2012. Personal communication, February 4.
Mink, Jonathan. 2012. Cited in Owens 2012.
Mrozek, Paul. 2012. Doctor treating 10 Le Roy students says media saturation not helping. The Daily News (Batavia, New York, February 2).
New York State Department of Health. 2012. Investigation of Neurologic Symptoms among Le Roy Jr/Sr High School Students, October 2011–January 2012, Interim Report, January 31.
Orr, Steve. 2012. More Le Roy details emerge. Rochester Democrat and Chronicle (February 4).
Owens, Howard. 2012. Expert to discuss tic outbreak in Le Roy. . . . The Batavian (January 10).
Roman, Dayelin. 2012. Girls’ illness still a puzzle. Available at www.timesunion.com/
Rumrill, Michael P. Personal communication, February 4.
Saltz, Gail. 2012. Speaking on NBC’s Today show, January 17.
Schenek, Dan. 2012. NY medical mystery: Woman showing same symptoms as Le Roy teens. Available at www.hlntv.com/
Stobbe, Mike. 2012. Associated Press release by AP medical writer, reprinted in ABC News online, “Mass Hysteria Rare, but Usually Seen in Girls,” February 3, 2012.
Swedo, Susan. 2012. As investigator for the National Institutes of Health, cited in Tan 2012d.
Tan, Sandra. 2012a. Mass hysteria cited as cause of problems in Le Roy. The Buffalo News (January 13).
———. 2012b. Le Roy students, public still seek answers. The Buffalo News (January 29).
———. 2012c. Le Roy residents air concerns. The Buffalo News (February 5).
———. 2012d. In search of answers to the many questions in Le Roy. The Buffalo News (February 9).
Tarr, Charley. 2012. Personal communication, February 4.
See also Steven Novella’s “The Science of Medicine” column »