The girls who are continuing treatment at Dent Neurologic Institute are getting better, according to Dr. Laszlo Mechtler.
The girls who have been influenced by media hype and discontinued treatment aren't doing as well, Mechtler said Saturday evening in an exclusive interview with The Batavian.
"The ones who are not appearing on TV are getting better," Mechtler said. "The ones who are on TV are getting worse or staying the same."
Of the original 12 girls who were part of the first group of patients suffering from tic symptoms at Le Roy High School, 10 sought treatment at Dent, two didn't, and some have broken off treatment, Mechtler said. Of the 18 patients that doctors are aware of, 14 have been to Dent.
But even for the girls continuing treatment, erroneous and sensational media reports are not helping them, he said.
The girls see reports about TCE and national personalities proclaim, "Oh, my God, we can save thousands of lives," and going so far as suggesting bodies being exhumed from cemetaries for investigation, and the girls take such reports to heart, Mechtler said.
"We had six or seven girls who were doing so much better, but after the media reports, in three weeks time, they're in my office crying, 'this chemical is in my head and I'm damaged for the rest of my life,' " Mechtler said.
When media reports haven't focused on environmental issues, the other issue to spring up has been PANDAS (aka, PANS), and Mechtler said PANDAS was ruled out as a cause of the tics for some very specific reasons.
First, and even though some physicians disagree, PANDAS is very rare.
Imagine your chance of winning the lottery, according to the analogy used by Mechtler. What are the odds? Now imagine you and 11 associates all independently picking the same numbers and winning the same drawing.
That's how unlikely it is that the original 12 girls suffered from PANDAS, according to Mechtler.
And that's all dependent on PANDAS even being a real disease, which not all medical officials agree on either, Mechtler said.
The other thing the media hasn't known when reporting on the subject, Mechtler said, is that Dr. Susan Swedo, who first described PANDAS in 1998, consulted with Dent on the Le Roy 12. She also concluded PANDAS wasn't the issue and has agreed with the conversion disorder diagnosis.
Mechtler said he's been told that Dr. Swedo will appear on a syndicated television show either Monday or Tuesday and confirm her support of the conversion disorder diagnosis.
From the beginning, Mechtler said, the media have failed to properly understand conversion disorder and have drawn on erronenous information about environmental and infectious causes to sensationalize the story.
That hasn't been good for his patients, he said.
"In conversion disorder, the worse thing you can do is interview these teenagers and reinforce the disorder and increase their stress," Mechtler said.
He explained that conversion disorder is far more common than people realize or the media has reported.
The media have also misreported -- and some people have misstated -- that conversion disorder is a diagnosis that can only be reached after all other possible causes have been eliminated, calling it a "diagnosis of exclusion."
He said a good neurolgist will recognize conversion disorder on the first consultation with a patient.
He used the example of hysterical blindness, which is a form of conversion disorder. If a patient claims blindness and the neurologist suspects conversion disorder, all a doctor needs to do is put his hand in front of the patient's eye and track the patient's involuntary eye movement. There's no need for environmental or infectious disease tests to arrive at the correct diagnosis.
It's the same with just about any diagnosis of conversion disorder. The initial exam will tell a physician a good deal about what is going on with a patient.
What's unusual in the Le Roy case is that so many people have come down with the same symptoms -- 16 students, plus one adult in Le Roy and one person in Greece.
In that regard, the Le Roy situation falls into the category of Mass Psycogenic Illness.
The illness began with an index case, a girl who already had Tourette Syndrome, but in October, after suffering a head injury, developed more pronounced tics.
One fact the media have repeatedly misreported, Mechtler said, is that the girls involved don't know each other.
The girls, along a chain of connections, are woven together, Mechtler said. One healthy girl spent the night with a girl who had tics and the next morning, developed tics, for example.
"The networking here among these girls is far more intensive and far more complex than the media is aware of," Mechtler said.
Bullying has also played a part in excerbating and spreading the disorder, Mechtler said.
"We have known some bullying is going on," Mechtler said. "This bullying has occured prior to symptons occuring and since that time, some of the bullying may have increased. Bullying is another form of stress inducer among young people."
When it comes to stress, Mechtler said, reporters who have focused on environmental issues and downplayed the role of stress in conversion disorder have no idea of the amont of stress the original 12 girls went through prior to developing symptons.
Mechtler said he can't discuss examples, but he said in every case, the life stressors uncovered for each of the girls have been incredible.
"In some cases, it's everything you could imagine and worse," Mectler said.
If anything good can come of the Le Roy case, Mechtler said, it's that it opened an opportunity to better understand conversion disorder, and the national media coverage has introduced many people to the illness.
"A lot more doctors and a lot more patients are going to be more comfortable with the diagnosis," Mechtler said. "A doctor can say, 'You've got conversion disorder like they had in Le Roy,' and the patient is going to be more accepting."
Because conversion disorder is an illness that not many people have known about, even though it is very common, Mechtler said, it's been a very difficult illness to tell patients about.
"How hard is it to tell a patient who is scared and upset, 'I've got good news. Your symptoms are all in your brain,' " Mechtler said. "It's difficult to tell a mother or father that it's all in their child's head. They have a hard time accepting it. It's like you can have a patient who comes in who has had headaches for three weeks and after I finish the examination I say 'It's all stress related' and the person looks at me and says, 'It's not a brain tumor? I don't believe it.' Some times people don't want to believe the good news that it can be treated."
Mechtler said doctors still don't know as much as they would like to about the disorder.
One benefit of the Le Roy case is that several of the patients have agreed to specialized functional MRIs so that their brain scans can be compared to people without conversion disorder and perhaps neurologisist will learn how the brain changes in relation to the disorder.
"Maybe we can get more information out of this bad thing, and maybe something good can come of it," Mechtler said.
Two scientific papers Mechtler referenced during our conversation: