State health officials recently added three more people to the list of people diagnosed with a mysterious tic-like illness that has affected more than a dozen students — mostly high school girls — in Le Roy, N.Y., since last fall.
On Sept. 4, a community meeting in the upstate town grew heated, according to local media: while many participants said they were satisfied with the state’s investigation of the disorder — which has been determined to be psychological in origin — many other, including the families of several affected girls, said they continued to believe that the real cause, which they believe to be environmental or infectious, is being ignored or covered up.
Concerned residents note that the town was the site of a 1970 train derailment that spilled tens of thousands of gallons of toxic trichloroethylene, an industrial solvent, and that natural gas has been removed nearby using the controversial fracking technique, which involves pumping potentially dangerous mixtures of chemicals into the ground. But investigators maintain that the illness, which manifests in verbal outbursts and tics reminiscent of Tourette’s syndrome, does not fit the symptoms or pattern of distribution expected from toxic exposures. They conclude that it is instead a stress response known as mass psychogenic illness.
Healthland spoke with Joan Broderick, associate professor of psychiatry at Stony Brook University, who has conducted research on psychogenic illness and treated many patients suffering from it. Broderick is a senior consultant to the Red Cross in disaster mental health, and recently published a paper [PDF] about the role of the media in outbreaks of disorders like the one in Le Roy.
What are the most important factors in dealing with cases like Le Roy?
I think that it is very important that the health department and those agencies responsible for the environmental safety of communities engage in a responsible and thorough investigation. That investigation needs to be transparent. The outcomes need to be communicated very effectively to the affected community that feels that they are under threat. Their message is not going to be effective unless there is a trusting relationship between the community of impacted individuals and those agencies.
At the same time, the individuals who are exhibiting symptoms need to be protected. The best advice in terms of managing this would be that impacted individuals should probably be kept apart from one another to reduce the contagion aspect. They should be shielded from media and the investigation that is going on, so that they can let their sense of alarm and threat start calming down.
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What other concerns arise when treating psychogenic illness?
It varies by situation. The important thing is to reduce the sense of threat, reduce the opportunity for contagion and continued inflammation, and create conditions in which the illness is fully validated, while at same time supporting the ability to recover. Affected people need to believe that they don’t lose face by recovering. They should be given tools that allow them to reconceptualize what happened to them and to let the physiology calm down so that the symptoms can subside.
The worst thing you can do in treating these individuals is to confront them directly with ideas about it being ‘all in your head.’ That does not do justice to the mind/body interaction going on.
They really are experiencing symptoms. The symptoms are real. If you keep talking to them only about reducing stress, that will be insulting. It is a mistake to imply that they’re hysterical. It’s not the right approach.
There has to be a complete sense of respect of for the patient, validating that they are having a difficult time and very troublesome symptoms. The focus should be on how are we going to help you get better.
There’s nothing worse than feeling like you are ill because of some agent, yet people are saying, ‘Oh you’re stressed’ and patting you on the head in a condescending manner. That will understandably provoke, ‘I have to prove that I am ill.’ That’s the last thing you want patients to have to put more energy into. In fact, it is difficult for people to recover from psychogenic illness when the belief persists by the patient and those around them that there is a real threat that has not been detected or is being covered up.
You have to address the threat and start working on deconstructing the threat. As in a lot of psychotherapy, you have guiding principles that you are applying, but the specifics of the situation and the patient guide the implementation. Cognitive behavioral therapy [a type of psychotherapy shown to help with pain, depression and many other disorders] is an approach that is helpful for psychogenic illness.
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Will the students’ doctors or therapists talk to them about how long-term stress can contribute to very real physical illnesses like heart disease and stroke?
At some point in treatment, you might introduce those concepts as a way of helping the patient reconceptualize the illness and understand the mind/body connection. But I wouldn’t make that the first discussion.
If stress and anxiety are part of the problem, would anti-anxiety drugs like Valium help?
A lot of people think that, but it’s not that simple. I’m not familiar with what treatment is being provided for these young people. Sedatives might or might not be part of treatment. Cognitive beliefs become established about one’s illness, and sedatives don’t address that.
What is the impact of media attention?
When you think about the process that we believe underlies the onset of psychogenic illness, it is a sense of threat. The most common trigger for psychogenic illness is perceived detection of a noxious odor. An odor is perceived. People think, What is it? Is this dangerous? They may start getting anxious. Those anxiety symptoms may include nausea and faintness due to hyperventilation.
We’re always attributing what we’re feeling to something. We feel sick and think, Oh, I wonder if the food was bad. This is not an atypical process; it’s about the attribution that gets made. So people notice something unusual, they label the event as threatening, [the media reports it widely], that increases anxiety, which increases physical symptoms, which then are attributed to the threat. It becomes a rapidly spiraling mind/body process.
What do we know about the link between media coverage and mass psychogenic illness?
The jury is out. There’s an awful lot of epidemiological work that suggests that a greater degree of media exposure is associated with increased anxiety and psychogenic illness. This is not a criticism of the media; they’re doing their job. It’s just that more media signals a more serious threat — a key factor in the onset and perpetuation of psychogenic illness
I think media and public messages can have a very positive role as well. This is probably one of those situations where it’s a double-edged sword. Some aspects of media can be harmful or alarming and others can be reassuring and provide people with the guidance they’re looking for.
In scientific review papers on this topic, people observe that to the extent that there is very intense media coverage, as well as emergency medical response and continued response, those factors are associated with a prolonged episode of psychogenic illness, recurrence and further contagion. But there is really very little good experimental data that proves that media exposure causes this.
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Why would both media and emergency services be potentially negative?
Because both media attention as well as emergency medical response signal threat: My God, there really is something to be worried about! People are being taken to the hospital, people are being kept for observation. The health department is here so there really must be something terribly wrong.
So the threat takes on increased authenticity and legitimacy, and the cycle continues.
Should the teens who are affected be shielded from media coverage?
Ideally, the affected individuals would be protected. There can be people who are activists pushing for more investigation, but the affected individuals should be shielded and protected so that if it is psychogenic, they have an opportunity for recovery as opposed to further deepening of this illness.
Obviously, there are situations in which political interests or corporations want to cover up environmental threats, and the diagnosis of mass psychogenic illness sounds like a convenient way to dismiss real dangers.
There are situations where that’s, in fact, true. The responsible approach to these situations is to very systematically conduct environmental assessments and do appropriate ruling out or ruling in of a threat. Medical professionals who are involved will look at the pattern of symptoms and determine whether they are consistent with a toxic exposure or an infectious agent.
What you often see with psychogenic illness is a poor match between the constellation of symptoms the patients are reporting and what we expect in infectious disease or contamination.
This whole business of psychogenic illness [can be considered this way]: after you have ruled out with some degree of confidence environmental exposures, and after you’ve ruled out a good fit with the presentation of known toxins or infectious agents, there’s a convergence of evidence suggestive of psychogenic illness versus an organic entity that caused the illness.
I think it’s a very important area. If more research were done, we would actually learn very important things about mind/body interactions, just like AIDS taught us so much about immunology.
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Maia Szalavitz is a health writer at TIME.com. Find her on Twitter at @maiasz. You can also continue the discussion on TIME Healthland’s Facebook page and on Twitter at @TIMEHealthland.