By now you have probably heard of the middle and high school children in LeRoy, NY who have come down with what some reports are calling a “mystery” illness. Of course it is almost obligatory to note in such stories that doctors or experts are “baffled.” There are several features of this story that are interesting from a science-based medicine and also just a critical thinking point of view – the media response, how such ailments are diagnosed, the publicity around a private medical condition, and the speculation from many camps that appears ideologically motivated.
To first review the facts of the case, there are now 15 children affected with involuntary tics, which are sudden “jerk-like” motor movements. They all attend the same junior-senior high school and so range in age from 12-18, with onset of symptoms from October to January of the current school year. All but one of them are girls. All of the children have been examined by pediatric neurologists, 12 of the 15 at the Dent neurological institute by the same two neurologists, including Dr. Lazlo Mechtler.
Dr. Mechtler, and in fact all of the pediatric neurologists who have examined any of the children, have come to the same diagnosis: conversion disorder and mass psychogenic illness. A conversion disorder occurs when psychological stress manifests as physical symptoms. We take this for granted to some degree – when people feel anxious they may get sweaty, nauseated, short of breath, and have palpitations. People with panic attacks can have these symptoms and also difficulty swallowing, and episodes that may resemble certain types of seizures with feelings of being separate from reality or from themselves. These are physical symptoms resulting from pure emotional stress. But in some cases psychological stress can also lead to neurological symptoms – pretty much any neurological symptoms, such as weakness, difficulty speaking, loss of vision, and involuntary movements.
It’s important to note that this is a known and well-established syndrome. Neurologists see patients with conversion disorder frequently, and it can be positively demonstrated in many cases that the neurological symptoms are not due to any damage or lesion in the nervous system but to psychological stress. For example, it can be demonstrated in someone with psychogenic blindness that their visual system actually works. Many patients with psychogenic seizures display features that are neuroanatomically impossible to be due to actual seizures.
It is always challenging to deal with such patients. We try very hard to accurately and constructively convey to patients and their families what is happening, but unfortunately there is an undeserved stigma attached to psychological ailments in our culture and many patients resist such a diagnosis. We tend to focus on the positive – psychogenic symptoms can completely get better on their own (and usually do with encouragement and reassurance) because there is no irreversible damage to the nervous system.
The diagnosis of psychogenic illness, however, is also partly a diagnosis of exclusion. Even when a patient is displaying features that are highly suspicious for a psychogenic illness, we need to do a sufficient evaluation to rule out other causes. It is often the case that a physical ailment is underlying the psychogenic symptoms and in fact triggered them. The diagnosis is therefore usually made only after a thorough workup.
In the case of the children at LeRoy the doctors on the case report that they have been thoroughly evaluated, including screening for any toxins, infections, or signs of a physical illness, with completely negative results. The school has been examined also, and no environmental toxins or chemicals have been discovered.
In this case we are probably dealing with not only a psychogenic illness but a case of mass psychogenic illness, which is also a known phenomenon. In these cases the stressful trigger is partly the appearance of symptoms in other people, which causes anxiety about there being a contagious illness or an environmental exposure. In susceptible individuals this can trigger a psychogenic illness mimicking the symptoms of those already affected. There may even be an original case that is due to physical illness that acts as the trigger. We do not know what makes individuals susceptible to this, but epidemiologically women are affected much more than men.
The LeRoy case has all the hallmarks of a mass psychogenic illness. Most of the symptomatic individuals are women, they are all part of the same small and close knit community, and have social contact with each other. The diagnosis, therefore, is not based entirely on the exclusion of other causes. The case also has a natural history and epidemiological features that fit a mass psychogenic illness.
Let the media frenzy begin
In a perfect world that would be the end of this story. Experienced doctors are on the job, they have performed their due diligence and made a reasonable diagnosis. Some of the children are getting better with the usual reassurance and encouragement. Experts at the NIH are also offering to further evaluate these children – but not to question the diagnosis. Rather they are experts in psychogenic movement disorders and want to research this phenomenon. They are interested in peeking into the brain with functional MRI scanning and also doing genetic testing to see if they can unravel why some people are more susceptible to psychogenic symptoms.
However, we live in a world with a 24 hour news cycle, the internet, and a culture that believes that everyone can be their own expert. Because of the media attention this case has received many people have come forward to promote their own pet theories and ideologies and impose them on these children.
Dr. Rosario Trifiletti, who is an expert in a rare condition known as PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection), has come forward to claim that this is what these children have. I cannot get into a thorough evaluation of this complex condition, but suffice to say that Dr. Trifiletti is a major promoter of this diagnosis. There is a tendency to see what we know, and experts in a narrow illness often tend to see their pet disease everywhere. Looking at the NIMH definition of PANDAS, it does not seem to fit this case well. Age of onset is supposed to be 3 to puberty, these children are 12-18. There is no indication that girls are affected more than boys with PANDAS. Further, PANDAS is a clinical diagnosis without any laboratory confirmation, and part of that clinical diagnosis is that symptoms were triggered by a streptococcal infection ( such as strep throat), which does not appear to be the case here. PANDAS also involves more that tics – it can include mood changes and obsessive compulsive symptoms. All in all (of course, just going on information that has been made public), not a great fit. I suspect the Dent neurologists would have been able to distinguish PANDAS from a conversion disorder, especially after it was suggested as a possibility.
Unfortunately, due to the stigma of psychogenic illness, some parents of affected children are seeking an alternative diagnosis, and a rare autoimmune disease is more acceptable.
Those who have made exposing the risks of environmental toxins see in this case a possible environmental toxin. Famous activist Erin Brockovich was apparently called in by some of the parents, and so sent her team in to investigate. She has speculated about:
…whether students have been exposed to contaminants from the train derailment that occurred within a few miles of the school in December 1970. That derailment spilled cyanide crystals and leaked carbon tetrachloride.
Of course, an environmental toxin such as that would not explain the time course of the illness nor the predilection for girls over boys. A search for environmental toxins has already turned up negative, but we get into the problem of proving a negative. Brochovich claims the search has not been thorough enough – but that claim can be made arbitrarily without limit. You can keep searching for toxins with lower and lower thresholds until you find something. Toxins are ubiquitous in the environment in background concentrations generally too low to worry about, but if you look hard enough to can find something.
Perhaps the most reprehensible exploitation of the LeRoy incident is by anti-vaccinationists – who, of course, see vaccine injury everywhere. Chiropractor Russell Caram speculated:
The other possibility here are HPV vaccines, Gardasil and Cervarix. The timing becomes more easily explained – as most children “get their shots” (and boosters, such as DTaP and the flu shot) before enrolling in school in the fall. It also satisfies the girls-only attack (even though they’re trying to convince boys to get the Gardasil shot also), as well as the age group (9-27).
As a physician, I find the whole government group handling this to be untrustworthy. These officials are not unbiased by any means, and they have an interest in the outcome of this tragedy – with them being paid by Health Departments whose income depends widely on the promotion and sales of vaccines. Maybe no one else questioned this, but I certainly don’t buy the “Conversion Disorder” diagnosis being offered.
Caram tries to make it seem that the government was somehow involved with the diagnosis – but the children were diagnosed by neurologists, not the government. He offers no argument to reject the conversion disorder diagnosis, and instead exploits the stigma of psychological diagnoses and scare quotes to imply that something sinister is going on.
Caram also failed to ask the most basic question – how many of the girls affected (when he wrote the article the lone boy had not yet manifested symptoms) actually received the Gardisil vaccine. It turns out, most did not. So much for the Gardisil hypothesis.
The crank blog, Age of Autism, also jumped on the case, supporting any suggestion of a connection between toxins and neurological symptoms. They point out that a ball field was built on school grounds in 2009, arguing this might have stirred up toxins in the soil or introduced toxins in fill.
The details of this case that have been reported strongly point to a mass psychogenic illness as the culprit. It is an important lesson, as most people underestimate the ability of our brains to generate physical symptoms. There are neurological experts on the case, and others (at the NIH) willing to do further research into the phenomenon. Then there is a circling of those looking to promote their cause or ideology, who seem to be dismissing the diagnosis of experts out of hand and trying to weave this story into a sinister tale.
In the middle of all this are the students and their families, who have to deal with a delicate neurological ailment before the mass media. We can certainly hope that science and reason wins out, but the cranks often have the more alluring answers to offer.