Sympathy-Seekers Invade Internet Support Groups

One Expert Calls It 'Munchausen by Internet'

By Jim Morelli, RPh

They're supposed to offer comfort and advice for those suffering from a medical problem, but Internet support groups may feature something else: fraud.

Marc D. Feldman, MD, of the University of Alabama at Birmingham's Center for Psychiatric Medicine, calls it "Munchausen by Internet" -- a variation of the type of psychiatric disorders that include Munchausen syndrome and Munchausen by proxy. In these disorders, people cook up or induce fictitious illnesses in themselves or others in an effort to gain sympathy.

Feldman points out that the overall rate of these disorders, named for a German baron famed for his tall tales, is low: "In real life ... Munchausen syndrome is rare. My sense is, at least at this point, I have to believe the same is true for online [Munchausen]." Still, the fakers are out there -- and Feldman offers some clues on how to spot them:

• They make fantastic personal claims, which are later disproved or contradicted.
• They describe the worsening of an illness, followed by a miraculous recovery.
• They give light-hearted descriptions of serious medical problems.
• They bring in "supporting players" when their audience's attention wanes. ("Now my mother's terminally ill.")

In a study published in the Southern Medical Journal, Feldman describes four cases of Internet posers. In one, a "young woman" held a support group spellbound with the tale of her struggle with cystic fibrosis. Her dream was to die on the beach. That finally happened, according to a posting from the sick woman's sister "Amy." Group members picked up on the ruse when they noticed similarities in spelling errors in postings from Amy and from the sister who was supposed to be dead.

In another, group members were duped by a person claiming to be a 15-year-old-boy with migraine headaches, a blood disorder, and a seizure disorder -- who also happened to be a fourth-year medical student. His deaf "mother" stepped in when members started asking questions and warned them that the boy might slip into a severe depression if they kept it up.

"I became aware of these cases because people who felt victimized contacted me," Feldman says. "I think their telling me was an effort to expunge their souls of this deception, but also to get professional advice to restore their groups."

And there's no doubt these storytellers can have an enormous impact on Internet support groups. Among other things, Feldman says, they can:

• Create a division between those who believe the tale and those who don't
• Cause some to leave the group
• Temporarily distract the group from its mission by forcing it to focus on the poser

"Overwhelmingly, these support groups offer a tremendous benefit to people," he says. "[But,] as in other areas of our lives, we have to be informed."

But figuring out who is faking may not be easy. The unspoken tenet of Internet support groups is acceptance, and many of those suffering from disorders like Munchausen do their homework -- which is easier than ever, thanks to the web.

"The Munchausen patient used to have to go to a biomedical library and lug around these heavy textbooks," Feldman says. "Now they can lie back in their chair and click here and there ... and become more of an expert at esoteric medical diagnoses than a doctor."

Still, online fakers are far less of a concern than real-life ones, says Beatrice Crofts Yorker, RN, MS, who is a professor of nursing at Georgia State University in Atlanta, an attorney, and an expert on Munchausen by proxy. People with Munchausen by proxy may inflict injuries or illnesses on their children to gain sympathy for themselves.

"The only thing that's hurt here are users of the Internet [support groups]," she says. It's more important, she says, for health care workers to focus on people with these disorders when they are physically hurting other people -- and/or are unnecessarily spending health care dollars.

As for getting rid of the online attention-seekers, Yorker says confrontation is probably the most reliable way of stopping the postings.

more:  Munchausen by Internet: Faking Illness Online