Update on the Le Roy tics
Hi Reader. As you know, I like to keep you updated on science in the media, and I have stumbled across a really excellent article on a subject about which we’ve chatted in the past. Susan Dominus has just published an outstanding synthesis of the Le Roy tics phenomenon in the New York Times. The article is somewhat lengthy but if you’ve followed the story at all, it’s well worth reading to the end. Dominus is somehow able to convey this multifaceted story in a captivating but not exploitative manner. This sets her apart from many of the vultures who have descended upon Le Roy to push a specific agenda. After you read the story, don’t neglect the comments section, either, because it’s exemplary of the insanity that has surrounded this story.
There are quite a few interesting issues discussed in Dominus’ piece and the subsequent comments, and some that jumped out at me are going to be discussed herein. First, I found it fascinating that among the affected youths and their families, they immediately separated themselves into the “real” cases vs. those who were “faking it”. This occurred to such a degree that the mother of a young woman with tics accused another ill young lady of manufacturing her own symptoms. Another aspect of the story, threaded throughout, was the persistent notion in the community that a conversion disorder is just a synonym for faking a condition, which as Dominus points out is not at all accurate. A further noteworthy point was that one of the affected young women seemed to believe that it couldn’t be a stress-related conversion disorder, because one of the more popular teens–a cheerleader and excellent artist with “an amazing boyfriend” –had the condition. How could a young lady who seems to have it all possibly be experiencing stress? This comment is ripe for further discussion; however for now I must go on to what I found to be the most compelling drama of the story.
Of all of the information presented in the article the most riveting aspect to me was the discussion of Dr. Rosario Trifiletti, who has been mentioned previously here at SkewedD. Dr. Trifiletti burst onto the scene in late January, when he stated the following of the diagnosis of conversion disorder:
This struck me as interesting, because Dr. Trifiletti made the comment prior to having seen any of the patients. It struck me as even more interesting when I discovered that Trifiletti bills himself on his practice’s webpage as having a special interest in pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS). His comment was in direct opposition to the fact that PANDAS was ruled out by physicians who actually were treating the teenagers at the time. In addition, when Dr. Trifiletti finally did see the young women, he apparently only consulted with each for 45 minutes and failed to take a comprehensive medical history. The latter is especially important in this case as it may have revealed important background information the psychological stresses that some of these young women were apparently experiencing. Then again, as the saying goes, when all you have is a hammer everything looks like a nail.
It should be noted that from an epidemiological standpoint, it makes absolutely no sense whatsoever that PANDAS is the culprit in Le Roy. For example, there is no legitimate explanation for why PANDAS would only strike young women and not young men, despite Trifiletti’s claim that girls have “more sensitive endocrine systems”. A well-conducted epidemiological study revealed that over 70% of PANDAS cases were diagnosed in males. Further, approximately 70% of PANDAS cases are diagnosed at 9 years of age or younger, These data argue strongly against the concept that the teens in Le Roy are affected by PANDAS. Nonetheless, patients under his care believe that they are responding to antibiotic treatment, which introduces the concept of a powerful placebo effect. It entirely possible that the antibiotic gave the teens permission to improve by providing an explanation and a treatment for their symptoms that was more palatable than a psychogenic disorder. Evidence for the psychology behind a placebo effect was supported by an ensuing throwdown whereby the young women taking antibiotics allegedly confronted those who were not, stating that those who had not received pills but were improving must have been faking it all along. As Trifiletti himself stated in the article:
“I don’t know, maybe I’m wrong. It’s hard to distinguish between the drug and the placebo effect.”
Of interest is that someone claiming to be Trifiletti then posted the following in the comment section of the article.
In this comment, the alleged Dr. Trifiletti states that “it takes time” to solve medical mysteries. This did not, of course, stop him from announcing that he had solved the mystery on the Dr. Drew show a mere 8 days after seeing the girls. He also alleges in the comment that he has “objective laboratory data” which “strongly supports” PANDAS, and that these findings are based on the “Cunningham test”. It is worth noting that this test has not been validated in any way as a diagnostic for PANDAS; in fact, the National Institute of Mental Health (NIMH) states that “the diagnosis of PANDAS is a clinical diagnosis, which means that it depends on a carefully taken history and a physical examination, rather than on laboratory tests“. It is perhaps also worth noting that NIMH also lists “prepubertal onset” as a diagnostic criterion for PANDAS; a criterion that would exclude all of the Le Roy teens.
Despite all of the evidence to the contrary that the Le Roy teens have PANDAS, Trifiletti goes on to declare that he may very well publish his results in Scientific American. While I enjoy reading SA as much as the next geek, let’s be clear: it is NOT a peer-reviewed scientific journal, and the credibility of his results will forever be tainted if he publishes his data there. In fact, although Trifiletti seems to indicate that publishing in Scientific American would somehow be superior to revealing his results in The New York Times, it’s really not that much different. Meanwhile, some joker over at the comments section of the NYT article has asked him why he does not plan to publish in a peer-reviewed journal. No answer yet.
Finally, reader, I would be remiss if I failed to mention that approximately 10% of the comments at the NYT articles mention HPV vaccination. Our hope that the data would convince the vaccinhaters has been dashed, I’m afraid, even though an obviously brilliant and angelic soul named Emily bravely kept up the fight. I don’t know Emily, but I sure am grateful that she posted a link to my blog entry on the subject. Thanks Emily, you are a goddess!