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Mass Media Attention Psychogenic Syndrome – MMAPS

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).

and

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.

Conclusion:

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.

Posted in: Epidemiology, Neuroscience/Mental Health

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25 thoughts on “Mass Media Attention Psychogenic Syndrome – MMAPS

  1. bluedevilRA says:

    Were you thinking of posting on this topic before my topic suggestion on NL? Either way, thanks for investigating this! I think psychogenic disorders are fascinating, but I am not sure if I should go into psych or neurology to get maximum exposure to this field. Are psychogenic disorder subspecialists neurologists or psychiatrists? Or is it a collaborative field?

  2. Has anyone checked to see if the school was built on an Indian burial ground? Possibly a Hellmouth?

    RJB

  3. rork says:

    The thought processes in the buffalonews comments sometimes go: there is too much coincidence, so if we look hard enough we will certainly (“never in doubt”) find something – ignoring that one possible cause has already been proposed that would explain the localization, and similarity of symptoms.
    I might have put my early bets on drug use, but the docs would have asked about that.

  4. cervantes says:

    Indeed. The stigma associated with psychogenic illness, and the perception that people have that they’re being told it’s “all in your head” and therefore not real, is a problem in dealing with syndromes such as fibromyalgia and chronic fatigue as well. People can become disturbingly, even violently outraged by honest speculation about psychogenesis in even some of these instances, believing their suffering is being denigrated or called unreal, or that they are being accused of faking it.

    People need to get that the brain is a physical organ. Whatever it does is entirely real, but we are conscious of far less of it than we like to think.

  5. The quacks exploiting this situation are disgusting. I reviewed chiropractor Russell Caram’s website. He advocates:

    - Mythical subluxations as the cause of multiple disorders:

    Chiropractors address the underlying cause of pain disorders, headaches, low back pain and sports injuries by treating the cause, not covering the symptoms. Quite often, those painful conditions are linked to dysfunctional areas in the spine known as vertebral subluxations – where movement is restricted or spinal bones are misaligned. Chiropractors adjust vertebral subluxations and this often alleviates the pain.

    - “Chiropractic treatment boost productivity”

    - “Chiropractic treatment improves cognitive functioning”

    - “Chiropractic treatment boosts immunity and prevents other conditions”

    - “Chiropractic treatment reduces dependency on medications”

    - “Chiropractic treatment improves sleep quality”

    - “Chiropractic treatment adds life” (whatever that means)

    : Chiropractic Adds Life and Improves Structural Wellness – Regular chiropractic care instills patients with sense of ‘health-confidence” and self-confidence. Much can be said for first impressions. So whether it be in business or in our personal lives, your posture can speak for you before you ever utter a word. If you see someone standing upright, they carry an aire of confidence that bears watching and commands respect. Contrast that mental image with someone who is hunched over or slouches and you can see what I mean. Chiropractic patients learn to take charge of their own well-being, and in turn, increase their longevity by adding a heightened quality-of-life.

    - Regarding ADHD, which he claims to treat by: “Treat the spine, nervous system and nutritional needs of the body and it can heal itself. ”

    - “Chiropractic treatment can reduce ear infections”

    - He advertises a host of unproven techniques: http://drcaram.com/equipment-and-techniques/

    He advertises things that are either impossible, non-existent, or unprove/disproven. If the media is giving this wacko any sort of voice, then shame on them.

  6. DugganSC says:

    On the other hand, CAM might be the answer here. We have a disease which is largely in the patient’s heads. What better to fix it is imaginary treatment administered by a practitioner who’s spent years learning how to bamboozle people into feeling better? It’s playing to their strengths. You’d want to avoid anything that might cause actual harm like cervical manipulation, sticking needles, or cleansing, but something like Reiki might work wonderfully to convince these victims that they’ve been treated properly. Or, better, harnessing the power of placebo by putting them through a sham medical procedure involving sugar pills and vitamin B-12 shots administered by an impersonal doctor sporting a white lab coat and head mirror.
    I am, of course, be facetious here on the off chance this gets mistaken for a serious solution. :)

    As regards Brochovich, licensing that movie was one of the best moves in her career. It did an excellent job of covering up the fact that she pocketed most of the money paid to treat the victims of the town she prosecuted for. Not exactly an impartial observer…

  7. Robin says:

    @ cervantes, as someone with “chronic fatigue” and fibromyalgia, I emphatically wish it was psychogenic. Repeated sessions over the years of talk therapy, cognitive behavior therapy and various other psychological intervention, including pretty much the entire offering of psychiatric medication, has yielded no success. More than one mental health professional has given me a clear bill of mental health. Similar multiple attempts at excercise therapy has not only failed, but reliably worsened symptoms.

    While some people with fatigue and pain do have underlying psychological issues, there are many people like me who do not. In fact, I am envious of people who do have psychological and psychiatric illnesses because they have an entire medical specialty at their disposal and treatments that actually work. I would even argue that the stigma for CFS is worse than that for mental illness.

    So, upon hearing the umpteenth exam room suggestion toward psychiatric or psychological treatment for my ongoing, severe, and furiously disabling symptoms, it takes a great deal of restraint to NOT get testy.

  8. Harriet Hall says:

    @Robin,

    “suggestion toward psychiatric or psychological treatment for my ongoing, severe, and furiously disabling symptoms”

    Maybe those suggestions are not due to “it’s all in your head” disbelief. If there is no effective treatment, psychological counseling might at least be helpful to improve coping skills and quality of life.

  9. Zetetic says:

    Hmmm… Reminds me just a little bit of Henry Miller’s play “The Crucible”!

  10. Quill says:

    Quite the interesting media event indeed! I am startled by the CAM folks. They are always talking about the “power of the mind” to heal everything and restore “balance” but when presented with a clear case of the mind’s power, they go digging in the dirt looking for toxins, scanning the skies for miasmas, and cracking spines to adjust physical problems.

  11. colli037 says:

    @bluedevilRA—if you want to see (and work with) a lot of conversion type symptoms, I’d suggest Neurology, with a fellowship in movement disorder or pain (and if you are currently a “bluedevil” look up the neurology division there-)

    t

  12. bluedevilRA says:

    @colli037, would peds neuro be better suited for conversion disorders since theyre more likely to occur in adolescent females?

    i think movement disorders in general are pretty fascinating (not just the psychogenic ones). the desiree jennings case is what first got me interested, which also how i first learned about SBM, NL and RI. formerly a bluedevil, hoping to return to NC one day.

  13. wb4 says:

    Has anybody considered that these kids might just be faking it for a lark?

  14. elmer says:

    This comment is mainly in response to the exchange above involving cervantes, Robin and Dr. Hall, above. I’ve seen way too many stories about patients having to fight against the “psychosomatic” label when they have a condition for which there are no objective measures for the symptoms, e.g. pain. Michael Margoles’ book Chronic Pain has quite a bit about this problem. It also comes up a lot on the neurotalk discussion board. This thread is a good example: http://neurotalk.psychcentral.com/thread162365.html

  15. aeauooo says:

    …being paid by Health Departments whose income depends widely on the promotion and sales of vaccines.”

    I work for a county health department. At a time when we are scrambling to find funding for our immunization program, I had to laugh when I read that statement.

    I can’t speak for other health departments, but in ours, immunization programs are an expense, not a source of income.

    I’m a proud member of the global conspiracy to insert nefarious purpose here_________.

  16. I’m with Rork, first thing I would have been curious about is recreational or “diet” drugs, but I’m sure the doctor’s would have looked into that, right, while screening for toxins? I’m not certain just asking would have done it.

    At a school nearby there was a group of middle school boys that all came down with a mysterious illness, turned out eventually to be one kid handing out morning glory seeds.

    This is not to dismiss the psychogenic diagnosis, just saying the drugs seem like one major thing that would need to be ruled out.

  17. As an aside, I’m curious if conversion disorder (or the like) occurs in the very young?

    A number of years ago a friend’s child had symptoms of seizures, unresponsive standing still and starring, when she was a preschooler. Neurological testing revealed no signs of seizures, which was great news. Eventually it was concluded that either the seizures had resolved themselves spontaneously, or the episodes were actually pseudo-seizures that were an psychological adaptive mechanism she had developed in the orphanage (China) that re-occurred under stressful circumstances.

    The episodes did disappear and have not returned in several years. To be honest, I always thought the pseudo-seizure theory sounded kinda far fetched/woo, but this article seems to suggest it’s not?

  18. TsuDhoNimh says:

    Brockovich wonders …whether students have been exposed to contaminants from the train derailment that occurred within a few miles of the school in December 1970.

    And in the 40 years between the spill and now … how many people have developed these symptoms?

    ************************
    # Quillon – when presented with a clear case of the mind’s power, they go digging in the dirt looking for toxins, scanning the skies for miasmas, and cracking spines to adjust physical problems. ROFL

  19. evilrobotxoxo says:

    @bludevilIRA:

    If you want to treat conversion disorders, go into psychiatry, but people in both neuro and psych get lots of exposure to them. Most people with conversion disorders present to neuro first (movement disorders, pseudoseizure workups, etc.), but it is a psychiatric condition, and psychiatrists get referrals from neurology to treat people like this all the time. Of course, if that was really a specific interest of yours, that’s the kind of thing that a neuro/psych double-board program would be appropriate for. BTW, Freud got his start as a neurologist who took an interest in conversion disorders, called “hysteria” at the time, and he developed psychoanalysis as a treatment. There’s a fascinating documentary on combat trauma-related conversion disorders in WWII veterans called “Let There Be Light” that can be watched in its entirely on youtube.

  20. PJLandis says:

    So, is the problem with chronic pain or fatigue the difficulty of measuring the symptoms or in isolating the cause or mechanism? I always figured that the symptoms, while not confirmable in a laboratory, were in at least a large majority of cases well established enough to create a diagnosis applicable to many patients. I figured the problem was indistinguishable from normal brain function other than via the symptoms, kind of like depression.

    If the symptoms are well established, then something is wrong, but whatever is causing the symptoms is just to similar or tied up in other nervous system activity or normal brain patterns or whatever to be isolated with our technology and understanding. Hence, while you can’t really design drugs to affect whatever the problem is directly, psychological intervention, which operates via conscious interaction with the nervous system, might be able to do cause changes in the nervous system that provide symptomatic relief. Does that make sense?

  21. John Santos says:

    @Zetetic:

    That was Arthur Miller, not Henry.

    Mostly, Hurray, my SBM account now works! (Thanks, Paul.)

  22. DW says:

    A related phenomenon is somatization disorder. My mother suffers this (and has done so her entire life). These people are highly susceptible to the purveyors of CAM and quackery. My parents spent thousands on “natural remedies,” bizarre guru tricks and endless pseudoscientific nonsense (not to mention actual unnecessary medical treatments and unnecessary surgeries and hospitalizations). It is an extraordinarily frustrating and sad situation for all involved. The symptoms are not dramatic and interesting like they are with conversion disorder – no seizures, no blindness, no paralysis, just endless, depressing, vague pains, mostly, and what my family has come to refer to as HSB or hospital-seeking behavior). Sometimes, a young resident in the ER would look at her and I could see he was thinking “Crazy lady,” and she’d be sent home; all too often, though, she would be admitted for extensive testing. Discharge diagnoses usually said something like, “dyspepsia and anxiety.” Back home, she and my father would begin another campaign of finding “answers,” from the likes of Deepak Chopra, Course in Miracles, etc.

    As far as I can tell, there has been no progress in understanding or treating this psychiatric syndrome in quite a long time. Doctors just tell me, “Every practice has these patients …”

    These patients are not only a massive (and I mean MASSIVE) drain on health care resources, but they are also an important target of CAM hucksters and a big marketing base for the “supplement” industry.

    Worth a post some time on SBM maybe?

  23. delictuscoeli says:

    Ugh, I just had the most unpleasant argument with a colleague about this. Evidently, this can’t be psychogenic illness because medical historians have shown that in the past psychogenic illness was misunderstood and misdiagnosed! So I guess that saves us all the effort.

    Sorry, I just need to vent in a reason-friendly environment.

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