June 17, 2010 -- If ever there was an example of words that could kill, a "pro-ana" or "pro-mia" website could be a contender.
"Ana" stands for anorexia and just as the name implies, the "pro-ana" and "pro-mia" (for bulimia) websites encourage starving yourself and explain how to do it.
Johanna Kandel, 31, said she used to read memoirs of anorexics to feed her obsession with losing weight. Now nine years after her decade-long battle with anorexia, she sees the same inclinations in people visiting "pro-ana" sites.
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"It's making it a lot more accessible, not only to get tips ... they actually get supported by one another to become more engrossed in their eating disorder," said Kandel, who founded the Alliance for Eating Disorders Awareness.
"Although you feel cannot recover, you absolutely can and you deserve to," said Kandel.
Anorexia nervosa has the highest mortality rate of any psychiatric illness. Between 5 to 10 percent of individuals with anorexia will die within 10 years of the onset of the disorder, according to the National Association of Anorexia Nervosa and Associated Disorders.
Psychiatrists are so worried by pro-ana sites, they would rather not see news about them at all. But the sites are so pervasive that doctors feel they must visit and study them to treat patients.
A new study that looked at 180 active pro-ana and pro-mia sites found convoluted messages of alluring emotional support and deadly advice.
As expected, 83 percent of the 180 sites openly advised visitors on how to start or continue an eating disorder, according to the study published today in the American Journal of Public Health.
Obvious instructions, such as BMI calculators and calorie counters were common, but so was indirect encouragement. Eighty-five percent of the sites included "Thinspiration" sections meant to visually encourage eating disorders through pictures of bony models.
Connie Diekman, director of university nutrition at Washington University in St. Louis, estimated that 1 to 3 percent of all women will become anorexic at some point in their lives and 2 to 8 percent of all women will become bulimic at some point in their lives.
Anorexia -- Rare but Deadly
Diekman, who is the immediate past president of the American Dietetic Association, estimated that 2 to 5 percent of men have eating disorders.
"A lot of these websites get struck down, but then they pop up elsewhere," said Dina L.G. Borzekowski, lead author of the study and associate professor at the Johns Hopkins Bloomberg School of Public Health.
Borzekowski said the general population may find the sites "extreme" and dismiss them, but from the point of view of a vulnerable teenager with a disorder, the sites could look enticing.
Trouble comes, Borzekowski said, when "someone's frequenting these sites, and getting their social support from these websites."
If you are looking for resources to get treatment for eating disorders click here.
Almost one-third of the sites in the study used "elitist" language to describe the eating disorders, as if having the mental disorder was a special privilege. Researchers cited a polite example as "If you are looking to become anorexic or become bulimic by being here then please leave'' and a rude example as "IF YOU WANT TO LOSE WEIGHT, GO ON A DIET FATTY. ONE IS EITHER ANA/MIA, OR NOT. IT IS A GIFT AND YOU CANNOT DECIDE TO HAVE AN EATING DISORDER. SO IF YOU ARE LOOKING FOR A WAY TO LOSE WEIGHT, S-S-S-SORRY JUNIOR!! MOVE ON, TRY JENNY CRAIG."
At the same time, the researchers at Stanford and Johns Hopkins Universities found attempts to give support within the "ana" and "mia" sites.
Forty-two percent of the sites they studied provided venues for artistic expression, such as poetry, artwork, music and videos. Additionally, 38 percent of the sites included information on how to get help, along with recovery-oriented information.
Psychiatrists said that paradox of recovery and encouragement in pro-ana websites shows how even the most ill understand that the condition is dangerous.
"Even on these sites, there's an implication that it's not healthy," said Dr. B. Timothy Walsh at Columbia University Medical Center.
Websites Complicate Accepting Anorexia as a Disease
"One of the complicated features in treating individuals with eating disorders is ... ambivalence about recovery," said Walsh's colleague, Dr. Evelyn Attia.
"When someone suffers from depression, they're quite clear that they would prefer experiencing life without depression," she said.
But with eating disorders, Attia said, "for many folks, even those who pursue treatment, there's often a flirtation with not getting better."
"Often patients explain just how tricky the experience of encountering these sites is. There's a part of them that wants treatment yet there are these complicated messages out there," said Attia, a member of the American Psychiatric Association and director of the Center for Eating Disorders at Columbia University Medical Center and Weill Cornell Medical College in New York City.
Psychiatrists who treat anorexia said they are anecdotally all too familiar with these sites. Yet not much research has been done on the topic or how to combat the influence of pro-ana and pro-mia sites.
"Almost every single child I get over the age of 13 has been on at least one of them, or knows all about them, even if they haven't been on them," said Dr. Stephanie Setliff, medical director at the pediatric eating disorders program at Children's Medical Center in Dallas, Texas.
"The younger children under the age of 12 aren't on them as much, because parents are monitoring their Internet use," she said.
Setliff said her approach to treating young children hasn't been to ignore the sites. Instead, she said she views them as just one more negative influence that must be addressed.
"You can't pretend that they aren't there, so then you might as well engage the treatment as part of that [the sites]," she said.
She said it is similar to the fact that "teenagers now are a generation of children who have never not seen a Photoshopped photo in magazines," said Setliff, who is an associate professor at the University of Texas Southwestern Medical Center.
Dr. David Herzog, a child psychiatrist at Harvard Medical School and Massachusetts General Hospital, said he actually does not hear of many eating disorder patients who visit these sites.
"I've occasionally heard about them. But for the most part patients don't report to me that they access those sites," said Herzog. "And I do see a fair number of eating disorder patients, and I inquire."
Herzog said while he absolutely doesn't endorse the sites, he does think it's useful to study them.
"I do try to understand what draws people to these sites so that we might be able to apply that to other sites that can draw them to healthier places," said Herzog, who is a member of the American Academy of Child and Adolescent Psychiatry.
"If we don't try to understand that we're missing something," he said.
Parents Can Help Teen Daughters at Risk
Since the majority of people with an eating disorder develop it in the teenage years, psychiatrists say parents should be aware of their own influence over their child's behavior online and in the home.
"Monitor kids online. Know where they're going, know who they're talking to and what sites their visiting, and if you have to put limits on computer use, do it," said Leslie Sim, a Mayo Clinic psychologist.
Sim said many children with eating disorders weren't inspired by recovery sites online either. It seemed their desire to get better fluctuated from day to day, meal to meal.
"They really require parents to do anything they can to get these kids to eat and maintain weight," said Sim. "They just need parents to take over."
Kandel said she pays attention to signs that others are looking for a way to further their eating disorder behavior. For example, when someone asks about her "lightest weight," she'll say, "the day I was born" so the person can't use the number as a way to compete in an eating disorder.
"I can understand that people who are struggling, they feel that they are in a community of people who understand," said Kandel. "But what they need to know is that on the pro-recovery side, there will be many people who understand."