Eating Disorders on the Internet: Proceed with Caution

They do it because they read it on the Internet. I'm talking about the latest trends in eating disorders advice and "therapy" that people learn online. We now have blogs, comments to those blogs, chat rooms, email, multimedia attachments to those emails, and heaven knows how many websites related to eating disorders.

The practice of interactively posting views and experiences is known as "crowdsourcing." While this word has a few meanings, in this article I am referring to the definition as "increasing our knowledge base through collective input." Everybody has a say, and in that "say," society gains by learning something larger than the sum of the parts. While there is solidarity in crowdsourcing, particularly in recovery sites such as something-fishy.org that offers bulletin boards and chat rooms to explore issues, there is also the chance of getting some really bad advice. The question is: how effective is crowdsourcing at increasing our eating disorders knowledge, especially in areas where the medical studies are lacking?

I am a molecular biologist by training and therefore my bias is toward rigorous science. I recognize the benefit of the gatekeepers such as physicians, medical institutions and even editors and science journalists, who cover these beats long enough to know fact from fiction. But I also understand that Internet gatekeepers are often nonexistent. Anyone can create a website and make certain claims, so it is important to know how to differentiate between helpful and potentially harmful information.

Let's look at two examples. On the Web, people are debating whether or not selective serotonin reuptake inhibitors (SSRIs) cause weight gain. This has implications since Prozac, an SSRI, is the only drug approved by the Food and Drug Administration for the treatment of bulimia nervosa. Therapists are also testing the anti-depressant for patients with binge eating disorder and as an adjunct to family therapy for adolescents with anorexia nervosa.

Some physicians claim SSRIs cause weight gain. Others swear they don't—or that SSRIs can even cause weight loss. Still other experts say it depends on the kind of SSRI and the person taking it. Now, if you read the banter from SSRI-takers themselves, you'll find the majority of posters have gained weight and are upset about it. Thus, in this variation on crowdsourcing, you're not getting collective wisdom, but rather "skewed collective wisdom." In science, we would say that the sample is not representative. And, as a corollary, if you follow the advice, your decision could be dead wrong—and maybe dangerous, especially since fears of weight gain have an enormous (pun intended) impact on recovery.

Another case of crowdsourcing that has appeared on the Internet involves chewing and spitting in which a person puts food in his or her mouth, tastes it, chews it and then spits it out without swallowing. There are testimonials from people whose lives have been devastated from the practice (i.e., a mother whose 23-year-old daughter has corroded her teeth so badly that she now has dentures.) There are even advocates, who, like the misguided pro-anorexia supporters, try to justify their unhealthy practices. Yet a third group is coming out of the closet and its members are finding each other.

I might call this flow of information a "good thing." However, what's missing is the omniscient voice: the one that weighs in with a clear, "do this or don't do that because there's really good evidence." In the case of chewing and spitting, we're still missing that definitive evidence: a published, peer-reviewed medical study. This is a case where the wisdom of the crowd precedes the medical consensus. And because the peer-reviewed evidence is lacking, the job of conveying the dangers of chewing and spitting is made even more difficult. The message should be: Chewing and spitting can worsen your eating disorder or cause you to slide into one. Play it safe and don't start the practice.

Still, I don't think we should—or could—stop people from using the Internet for eating disorders information. According to a study posted by the reputable Pew Internet and American Life Project, 8 in 10 Internet users have looked for health information online. Those likely to seek health information are well-educated, women, and younger than 35. Isn't that the primary demographic for eating disorders onset?

There is power in the Internet, so we should use it wisely. Rather than discontinuing "googling" for eating disorders, it might be better to do so smarter. Studies show that most Internet users say that they have criteria that help them determine whether or not a website is credible. For example:

• It emerges from an official authority or medical institution (e.g., The Academy of Eating Disorders).
• The author's name is posted and he/she is an expert with a degree in the field.
• There are no banner ads concurrently selling dieting products.
• The author has had work published in a peer-reviewed journal.
• The author works for a credible institution that deals with eating disorders.
• There are sound studies backing up the claims.

However, in practice, people mostly search for a term, chose the first one or two results that pop up and, if the information is repeated on more than one site, believe it as fact. What crowdsourcing boils down to is the source. For example, a nonauthority is someone who:

• is contemplating making a medical decision about his or her own eating disorder
• has already made such a decision to dire consequences
• is a person who derives his or her identity from the eating disorder
• is posting on the Internet for entertainment purposes

As you hunt and gather knowledge, remember that not all information is good information, or good for you. But it can be helpful to look objectively at what is available, particularly when there are still many uncharted frontiers in eating disorder recovery.