Confessions of a Quackbuster

This blog deals with healthcare consumer protection, and is therefore about quackery, healthfraud, chiropractic, and other forms of so-Called "Alternative" Medicine (sCAM).

Tuesday, June 07, 2005

Web Sites Celebrate a Deadly Thinness

New York Times
June 7, 2005

Web Sites Celebrate a Deadly Thinness

Before the Web site's pages begin to load, a box pops up the screen.

"Caution," it reads. "This site contains pro-eating disorder images and information. If you do not have an eating disorder or are in recovery, do not enter this site."

Click O.K., and a new box appears.

"Seriously. You enter this site of your own volition, and I am not responsible for the decisions you make based on the information you see here."

Click. A third box.

"So don't send me hate mail. It's your fault if you don't like what you see."

However sincerely intended, the warnings, posted on one of a growing number of Web sites that promote eating disorders like anorexia and bulimia, may serve more as a lure, especially for curious teenagers. And a recent study by researchers from the Stanford School of Medicine has found that the Web sites are commonly visited by adolescents who have eating disorders.

Such sites are the public face of a movement that goes beyond the denial that often accompanies addictive behaviors like alcoholism and gambling, into something more like defiance.

Many of the sites dispute that anorexia and bulimia are diseases, portraying them instead as philosophies of life. They offer tips on how to lose weight - by purging, among other methods - and how to hide eating disorders from family members or friends.

In the new study, presented at a meeting of the Pediatric Academic Societies, the researchers said it was unclear whether the Web sites played a role in drawing people into eating disorders or in making recovery more difficult, in part because the study sample was fairly small. A larger study is planned.

But the researchers found that adolescents who reported visiting so-called pro-ana, for anorexia nervosa, or pro-mia, for bulimia nervosa, Web sites spent more time in hospitals and less time on school work than those who said they did not visit the sites. For reasons that are unclear, the study also found that even when adolescents visited pro-eating-disorder and pro-recovery sites, they still fared worse than those who visited neither kind of site.

Pro-eating-disorder Web sites can be very attractive, experts say. Many are well designed and well written, and they appeal to an adolescent sense of rebellion.

"The belief that centers the pro-ana movement is the belief that eating disorders are a lifestyle choice and not a disease," said one of the study's authors, Dr. Rebecka Peebles, a specialist in adolescent medicine at Stanford's Lucile Packard Children's Hospital.

Consider the page that greets visitors when they finally get past the warning boxes. "Quod me nutrit, me destruit," it declares. What nourishes me destroys me.

The site goes on to give tips on how to conceal an eating disorder, including wearing baggy clothes, pretending to eat and hiding the health problems the disorders can bring on.

The author of the site, in a "disclaimer," says she is not promoting eating disorders.

"These sites," she writes "do not exist to say: 'I'm anorexic! Aren't I cool? Don't you want to be like me?' " The goal, she says, is to offer support: "This is a place where people can come to say, 'This is part of who I am. These are people who understand.' "

Jenny Wilson, a Stanford medical student and the author of the study, is skeptical of efforts to attach a philosophy to eating disorders.

Instead, she sees the Web sites as efforts by people with eating disorders to convince themselves that they have control over their lives. "I think it's an expression of the disease more than anything," Ms. Wilson said.

Many of the Web sites show a kind of ambivalence, the researchers said. They defend people's right to be anorexic or bulimic, but they spend a lot of time talking about the difficulties of having eating disorders.

Dr. Peebles of Stanford said that for some people, the sites might serve as no more than a support community, and not as a source of encouragement to continue destructive behavior. "They can express their innermost eating-disordered thoughts in a sortof anonymous way where they won't be judged," she said.

Still, when the researchers spoke to adolescents who had visited the sites, more than 60 percent reported trying weight-loss techniques they had learned there. (About a quarter of the adolescents who visited Web sites intended to help people with eating disorders recover also said they had found tips on ways to keep their weight down.)

For the study, the researchers sent surveys to the parents of 678 people, ages 10 to 22, who had been treated for eating disorders at Stanford. They also asked the parents to give separate surveys to their children.

In all, 64 patients and 92 parents responded.

And while the forms were anonymous, the researchers were able to link the responses of the patients with those of their families, to compare answers.

The study found that 39 percent of the patients had visited pro-eating-disorder Web sites, 38 percent pro-recovery sites and 27 percent both types of sites.

Despite the differences in reported hospital stays, the researchers found that those who spent time on the pro-eating-disorder sites provided basically the same information when asked about health changes as those who did not. Their weight was not much different from their ideal body weight, the researchers said, and they were no more likely to have changes in their menstrual cycles or to have symptoms of osteoporosis.

When the researchers tried to see how familiar parents were with the Web sites, they found that the parents whose children visited the sites were more likely to know about them and to be concerned about what their children were learning on the Web.

But 39 percent of those parents said they did not know whether their children visited pro-eating-disorder sites. And 15 percent wrongly reported that their children did not use them.

Some large Web servers like Yahoo, responding to complaints, have removed sites that promote eating disorders.

But the sites remain easy to find. And some experts wonder whether they are doing a better job of getting their message out than do the sites intended to promote recovery from eating problems.

Dr. Richard Kreipe, chief of adolescent medicine at the University of Rochester Medical Center, said he was struck by how attractive the pro-eating-disorder sites tended to be. Still, he said, it is hard to prove whether the sites actually make the problem worse.

The issue, Dr. Kreipe said, is probably not whether the sites can draw the average teenager into an eating disorder but whether they may influence someone with an inherited predisposition to develop the disease - especially an adolescent who is feeling isolated.

"The kid who's probably most vulnerable to this is the kid who's least connected to other people," he said.