I grew up in Batavia, N.Y., about ten miles down the road from the small town of LeRoy. I had just gone off to Cornell a few months before the big train derailment in December, 1970, that spilled cyanide crystals and about 30,000 gallons of the solvent called tricholoroethene onto the railroad bed.
I never imagined that 40 years later, as a psychiatrist, I’d be reading about this incident in connection with one of the most mysterious mass outbreaks of neurological symptoms in recent memory. And yet, this past January, the environmental-activist-cum-movie-star, Erin Brockovich, began investigating a possible connection between that chemical spill and the bizarre outbreak among a group of LeRoy Junior-Senior High School students.
I truly don’t know what explains the strange constellation of signs and symptoms seen in this group of young people. I’m not sure anybody does. Most of the expert opinion has settled on the description of “mass psychogenic illness.”
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Patients feel insulted, stigmatized and dismissed
I have expereined being insulted. I have experienced being dismissed, but “stigmatized?”
Not on your life. It is merely an insult, I do not excuse the person who utters it, do feel great sorrow for him/her.
Dr Pies,thank you for your blog post. I am not sure if you or the other people looking at this from a psychiatric point of view have all the info you need. This illness is in three different cities in upstate NY. Leroy, where the bulk of the cases are, Corinth (250 miles away, 2 cases BOTH of whom played softball and had dinner in LeRoy last year), and Bath, NY. There is also another outbreak in Indiana in two band members and one other female. I highly doubt this is a psychological event. I would like to offer you and your cohorts a challenge.. Can you offer one example of a mass pyschogenic event in any school system that lasted 9 months? Can you point to any mass psychogenic event that involved motor tics in a school system? Mass hysteria events are short lived, usually involve a common stress factor like a bunch of people in a building smelling fumes etc. They usually resolve quickly. Lastly, in case you are not aware, since 2001 there have been troubling instances of “female only” illnesses in the school system. The “mystery rash” which hit 32 states, affected hundreds of schools, thousands of kids was 90% to 100% female students. It was glossed over and covered over by the media and also described as mass hysteria. School nurses resigned, schools were closed , lots of stuff was going on. There is something either a new virus, or effects of too many vaccines that is causing problems, or perhaps a new pesticide that is being used on school grounds or something bothering these kids. Doctors who reviewed the mystery rash cases called the outbreak “unprecedented”. One researcher found genetic evidence of a parvovirus but not the complete virus and that is where the story ended. And lastly around this time many top viral researchers were dying all across the US and across the world. Let me ask you this… if you cant find another case of mass hysteria lasting 9 months, school nurses and doctors feel an outbreak is “unprecedented” and at the same time you have the top harvard biomed guy Don C. Wiley “Falling off a bridge to his death”, and his coroner mr oc smith found wrapped in barbed wire and explosives a few months later along with other big name scientists deaths (Robert Schwartz stabbed by sword, Benito Que bludgeoned to death) etc etc.. Doesnt is seem something is amiss to you? Im not a medical researcher, I work as a CPA. My daughter had this mystery rash, hundreds of kids in CT did, all female. Please wake up doc, test your common sense skills. – Marty in CT
This is the best article about the situation in Le Roy that I have read, Dr. Pies. As a woman, I have found that there is a general bias among some medical professionals to assume that female patients have psychological problems rather than physical illnesses. Then psychiatrists to whom the patient is referred are the ones to demand testing by medical specialists that unearths the real cause of the illness. Strangely, in my own experience, it was female general practitioners or internists who were most biased to inaccurately attribute neurological illness to psychogenic causes. I was happy to go along with that approach because I preferred much seeing a psychiatrist to spending a night wired up in a sleep disorder lab, but ultimately had to do that.
I do believe in a mind-body connection and that supportive psychological and psychiatric treatments can help patients recover from illnesses arising from any cause, but I worried about the increased bias a conversion disorder bias might create for a woman prior to even reading your article. If there is such a disorder as conversion disorder, then the real solution to bias is that the medical profession has to stop discriminating against women in general and perhaps patients of any gender with a psychiatric diagnosis.
However in the Le Roy cluster, I really wonder if these Tourettes-like illnesses could possibly be psychogenic in origin at all. I have not been able to find a case of supposed mass psychogenic illness that presented these symptoms. If the underlying susceptibility to mass conversion disorder is severe childhood trauma, then why have we not seen an outbreak of mass tic illnesses in populations like Incest Survivors Anonymous who have been meeting in groups composed of mostly female members since the early 1990′s and sharing extremely traumatic experiences? I have not read of an outbreak of mass psychogenic illness of any type among these groups, let alone one with the tic symptoms in the Le Roy cluster.
I think this is an excellent article on the Le Roy illness cluster. I hope that whatever the cause, those affected will recover soon.
(I left a longer comment earlier, but that must have not posted or have gone to your spam bucket.)
I’d like to thank the readers above for their very thoughtful comments on my essay. Just to remind readers of my standing internet policy: I reply directly only to fully-signed questions or comments. However, I will try to address, in a general way, some of the important points raised in these comments, after the dialogue continues for a while. Thanks again to the readership, and to Dr. Grohol for hosting this blog!
Best regards,
Ronald Pies MD
Doctor Pies, I wanted to fully sign my name and location so you can address the issues raisd in my reply to your article.
Martin Adamo
Branford, CT
Updating with some more info…
Approx 2 dozen cases in NY… In three different towns. 3 cases in Indiana.. I was just reading the anderson cooper show notes on this case and came across this message
”
carolann8 days ago-I am the mother of two girls 25 and 21. At the ages of 18 and 22 both girls, living in two separate states within two weeks of each other out of no where started having siezures. The 25 yr old a college student here on LI the 21 year old a college student in Philadelphia. Violent seizures falling hitting their heads causing concussions, bruising their hands in the night from a seizure during their sleep,tics,verbal tics,painful stiffness after each episode which takes a day to recover from,physial tics very much like these girls.Some times many sezuires a day,some lasted 15 minutes. Many nights in an ambulance for not being able to breath because it affected their diaphram. I fought with doctors for tests for strep they were negative. Asked about effects of deisel fuel and medications. Doctors say its “Hysteria” My girls were put into medically induced seizures and the doctors say they are very real but not epilepsy. Now three years later the episodes are farther apart but still the tics remain.I want answers I am always looking for anything to make my girls well. This has affected our family terribly. Medical withdrawrals from college has been very unrewarding for a pre-med student.Life is hell for these girls never knowing what is next. I know Erin will find the truth until then we need doctors to be more understanding and help us”
I am still awaiting case examples of any mass hysteria event lasting 9 months, any mass hysteria event leading to motor tic disorder in any group setting anywhere at any time…
I dont think you will find them.
Martin Adamo
Branford CT
How is this differnt then Fibromyalgia. There “the brain send electrical signals to the body along neuropathways (aka- A thought) causing pain.” It is treated with an Antidepressant. Isn’t that a doctors way of saying “It’s all in your head. I’ll be it your subconscious, but your head all the same.” Maybe they just need to come up with a more socially acceptable term.
I developed ticks last year on two separate a approx. month apart – once for 24 hours, another time for 4 hours. I both times had eaten fish. I also have autoimmunity problems. But I am and was very content with my life. My GP tried convincing me I have anxiety. The logics behind their “science” is “if it is not detected in the blood tests I would normally do, it is psychological.” It is scientifically not proven, that anxiety itself can cause this. Why people in those many terrible psychological experiments (such as prison guard/prisoner experiment) haven’t developed the ticks? Let us get some healthy students and try to cause them ticks. I say if it was possible, we would have heard about it.
The girls should either be tested at NASA, which is quite impossible with the mass hysteria hypothesis, or they should check the foods they eat. It could be a product that was changed in their diet with another kind, and given that they might have some genetic autoimmunity problems (to which females are much more prone) they developed the ticks when having eaten something. The method is called elimination diet – you do not eat a chosen product for at least a couple of weeks, then reintroduce a meal made mostly of the eliminated product, if the symptoms are severe, that could mean a part of the puzzle is solved.
Thanks again to all who have written comments on my article. I would like to address some important
points raised by Mr. Adamo, regarding the usual pattern, spread, and duration of so-called “mass psychogenic hysteria” or “epidemic hysteria.”
I am not an epidemiologist, so I can’t comment authoritatively. However, my strong impression is that, in most cases, the duration of apparent “conversion” symptoms in such mass outbreaks
is quite brief–usually, hours to days, with a
few “stragglers” sometimes showing symptoms for
weeks or months. My understanding is that the LeRoy cases have been active for about 4 or 5 months, which, indeed, seems quite unusual.
To cite a contrasting example: from 16 November 2009 to 22 January 2010, Taiwan investigated 23 clusters of suspected mass psychogenic illness after vaccination (MPIV) in the nationwide in-school vaccination programme against the 2009 pandemic influenza A(H1N1). Forty-five patients recovered spontaneously and were discharged from the emergency department within 12 hours of symptom onset; one patient was hospitalized but discharged the following day. Public health officials reviewed the school vaccination process and found that all recommended procedures had been followed. It was concluded that this incident was indeed a case of mass psychogenic illness, after vaccination.
There have been medical authorities, such as pediatric neurologist, Dr. David Lichter, who
attribute the longevity of symptoms in the LeRoy cases to social media, such as YouTube–clearly,
this is a new wrinkle in a very old story.
see:
http://www.ubspectrum.com/news/modern-day-mass-hysteria-1.2769418?pagereq=1
Dr. Lichter opines that “Some of these girls have uploaded videos of themselves to YouTube…People can model symptoms they see in people and in the environment. This used to be from direct face-to-face
contact…and now with social networking, you can be exposed to this over the Web. It’s possible
this could lead to [a] further spread of the symptoms, beyond the originally involved geographic
region.”
Dr. Lichter, who actually examined 3 of the LeRoy patients, also noted that, “Children that have
continued to appear in the media…are not getting better,” Lichter said. “Those who have…accepted
the diagnosis of conversion disorder, and who are getting the underlying stress and anxieties
addressed with counseling and psychological support are actually improving now.”
None of this rules out the possibility of an undetected “organic” cause of some sort, but
I think Dr. Lichter’s points need to be taken seriously, and might explain some of the atypical
features of the LeRoy outbreak, as raised by Mr. Adamo; e.g., the sudden appearance of tic-like illness in other cities.
Dr. Lichter also noted a history of pre-existing tic disorder in at least three of the LeRoy cases; thus, it is possible that conversion symptoms (such as tics) in a large group of individuals was “modelled” on a pre-existing neurological condition in two or three individuals. For example, it’s possible that one or more of the “initiators” (first cases) of the LeRoy outbreak actually had pre-existing Tourette’s Disorder or tics following streptococcal infection (so-called “PANDAS”; Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections). However, since I have not examined any of these individuals, and am unable personally to link any “initiators” to specific pre-existing neurological illnesses, I am simply speculating on possible scenarios. The point is
that there may be more than one explanation at work
in the LeRoy cases.
Once again: I think we need to balance the need for skepticism and vigilance against the risks of
inadvertently prolonging this outbreak by raising unwarranted fears. It is a difficult and
delicate balance!
Incidentally, I agree that women are often unfairly
seen as “hysterics” or dismissed as “neurotic”, when
there may be an undetected neurological condition
explaining their symptoms; e.g., systemic lupus
erythematosis (SLE), multiple sclerosis, complex partial seizures, etc.
For more on the topic of mass psychogenic illness, see the excellent article by Dr. Lawrence Altman in the New York Times, at:
http://partners.nytimes.com/library/national/science/health/011800hth-doctors.html
With best regards,
Ronald Pies MD
Doctor Pies, thank you for your response. I appreciate the time you took to reply and post some additional thoughts. What bothers me the most in these cases is the lack of an effort to examine other cases in other areas. When you have some research time, take a look at the article from the NY Times called hysteria hysteria. It is about the mystery rashes I spoke of that occurred from 2001 to the current time, mainly in females (about 90%).
The article itself is full of a lot of misinformation but again its a mass hysteria diagnosis for something very real. This was in 30 states, dozens if not 100 schools. It was verifiable in pictures and in person as it was here in CT. When school teams played intramural sports it seemed to spread to other schools. There always seems to be missing facts, competing facts and stories. For example, the doctor in the Leroy case that came up with the PANDAS diagnosis stated that the 8 patients he saw hadnt even been seen by the neuro group with the psychogenic illness diagnosis. How can that be? Also most of the articles leave out cases in other areas. For example in Indiana the three cases , in this case 2 boys and a girl. In that high school preceeding the event by a few months there was an incident forcing the school to evacuate due to strange odors. We are not adequately on guard against threats in my opinion. And at least in my mind, if in recorded medical history there have never been extended cases of mass pschogenic illness represented in motor tic illnesses than it probably isnt likely this isnt one either. Lets take vaccines for example. Maybe there is nothing wrong with any vaccine, but that the number of vaccines given allows for build up of some mercury or other contaminant. In Manasses Virginia which had hundreds of cases of the rash, the new mandate for a 3 shot HEP B series preceeded that school year entry. We need more investigative medical and environmental work. -Martin in CT…
Has anyone looked into possible drug use as the cause? Some of the symptoms of drug use are stress related. For example paranoia, dimentia etc..
Most likely it is stress related and/or drug induced. Another possible theory could be something visual occuring in the environment or even sound related. Ive only read a little about this case but it would have to be something common to all. But I would definitelly begin with extensive drug testing to rule that out. Related to visual another theory I have could be exposure to some sort of strobe light pattern in conjunction with sound. Could be they all went to the same dance club where new software light pattern is being used? Either way its genetic, random, or induced. Doesnt seem genetic except
for susceptability. Random would also include males. Induced seems most likely because it only affects mostly females. I would also definiely test the only male affected possibly for example in addition to drug testing I would also compare blood types of him and the other females involved. I agree with others on here that further testing should be done and by the way convergance disorder is a visual disorder mentioned here. Visual acuity could be the trigger but predisposition would have a common factor. In other words say strobe light was involved a trigger, but only affects females,predisposition. For an anomoly to be spread out even would mean that the anomoly exists everywhere. For an anomoly to occur in a certain area would mean anomoly is unique to that area. I think thats why so much the news attention to this. Another insight to all else is that culture travels from area to area for example
a fad might begin in say LA but for example that fad wont reach say Loisiana for example much later. However if it is coincidence or random which is possible then only time will tell.
I was doing some more research and came across a radio show broadcast from the area and listened. A woman called in and said her two boys ages 5 and 9 are in the Hilton School District (not sure where that is but its close) and both developed Tourettes. This cluster and other cases reported all over are not normal. Worse, people all over are not sharing information appropriately.
Marty – Branford , CT
Just stopping by with some additional information. One of the Corinth cases (one of two girls both softball players who both visited Leroy), has a definitive diagnosis of Lyme Disease and is being treated. 8 of 8 other girls tested has evidence of Strep and or a pneumonia bacterium which could cause PANDAS. Given the high level of rain in the area during the year in question AND the fact this was the first year insecticide and fungicides were NOT allowed to be used on fields it might be possible that tick borne infections are to blame in some cases.
Marty in Branford, CT
Studies done by the CDC indicate that while pesticides applied to yards kill ticks, they don’t reduce bites and disease in humans.
http://www.baltimoresun.com/health/bs-gr-lyme-pesticide-study-20120528,0,7216021,full.story
“Preliminary results for all three states from the first year of the study indicate that the yards treated with pesticide had 62 percent fewer ticks overall than the “control” yards sprayed with water, according to officials.
But the people in the treated households reported finding just as many ticks on their bodies as the residents of untreated properties, and there were basically the same number of Lyme disease cases reported in both groups.”
So I think we can rest assured that the schools are doing the right thing in reducing pesticide use as much as possible. I know too many pet owners and parents who wonder if clusters of cancers in children and animals who spent a lot of time on treated fields are due to pesticide exposure to want to see more of those products used.
The patients in the Le Roy cluster don’t seem to have an unusual burden of tick-borne illnesses, anyway.
Just popping back in on this story. The official update is that these girls are all ok now and that the media was the problem! Nice! Unfortunately they missed the guy with the video camera that caught the aerial spraying of toxins on a corn field nearby that cause this type of disorder. See the article here http://www.salem-news.com/articles/july192012/tics-toxins.php