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More MS news articles for March 2003

Fakers invading online support

It comes at the expense of ailing people who rely on help from groups

http://www.chicagotribune.com/features/health/chi-0302230297feb23,1,4424076.story?coll=chi%2Dleisurefamily%2Dhed

February 23, 2003
By Anne E. Stein
Special to the Tribune

The boy named "Chris" posting to an online support group for migraine sufferers had a story that was odd but plausible enough, at least initially. He was 15 and struggling with intractable migraines. Rather amazingly, as some sort of child genius, he was attending medical school. His youth and unique qualities brought him instant sympathy from the group.

Later he revealed that he suffered from hemophilia and a seizure disorder because his father had thrown him against a wall. His stepfather was an alcoholic and his mother was deaf.

Taken all together in hindsight, Chris' history was ridiculous. Coming out in bits and pieces, however, his fellow migraine sufferers bought it, even though Chris wouldn't say where he went to medical school because his "mother" wouldn't let him.

Chris also posted that he skateboarded three miles to a bus stop to get to class and made money playing drums at a nightclub. Unbelievable? Sure. But suspicious members of the group were criticized. "When anyone came back at the kid with disbelief, others would rally around him like he was being attacked," recalled Diane Hamilton, a New Jersey library administrator and former migraine sufferer who posted to the group from 1997-99.

"It was so outrageous. I felt like he was draining the resources of the group. And he was dividing us. There was doubt about those who were confronting him, about whether we were doing more harm than good. We divided into sympathetic versus unsympathetic camps," Hamilton said.

Eventually Chris' "mother" signed on and scolded the group, saying the questions could send him into a deep depression. When the questioning continued, "Chris" complained that the spirit of the Internet had been violated and he stopped posting.

There are thousands of health and medical support groups on the Web similar to the migraine group, focusing on everything from cancer and lupus to multiple sclerosis and depression. The groups, some connected to medical Web sites, serve as invaluable sources for families and patients to exchange information on physicians, drugs and current treatments, as well as a place for 24-hour-a-day sympathy and compassion. But they've also become a target for cyberspace fakers pretending to be ill. It's what factitious-disorders expert Dr. Marc Feldman, a Birmingham, Ala., psychiatrist, has dubbed Munchausen by Internet, or MBI.

Variation of syndrome

It's a new variation on Munchausen syndrome, where people feign, exaggerate or actually self-induce illness in order to win attention and nurturing they feel unable to obtain any other way. Instead of seeking care and attention at hospitals and doctors' offices, Feldman explained, as traditional Munchausen patients do, these people click from one online support group to the next, establishing different stories and personalities on various sites.

The author of several books on Munchausen, Feldman started studying factitious disorders 14 years ago, when as a new faculty member at Duke University's psychiatry department, he was called in to deal with a tricky situation. Social workers discovered that a woman in a Duke-sponsored breast cancer support group had been faking her illness, even shaving her head and losing 50 pounds to mimic the effects of chemotherapy. Feldman treated the woman and started studying and writing about Munchausen syndrome and Munchausen syndrome by proxy, where a person makes another person ill, often a mother inducing illness in a child.

In 1997, he discovered what he calls Munchausen by Internet, a phenomenon that he believes is increasing as the number of online support groups grows. "It's not just a playful activity, where you try on a persona and discard it because it's a game," he said. "The consequences have been really tragic in MBI cases." Feldman's first published paper on MBI appeared in the July 2000 issue of the Southern Medical Journal. Since then he has been contacted by numerous victims of MBI via his Web site, www.munchausen.com.

The problem with MBI is that illness-based online groups may be some people's sole support. While the betrayal is happening, valuable time and resources are displaced from those who need them. For the housebound, the groups are a lifeline to the outside world and the only connection to people living like they do. "To have someone make a mockery of their illness and misappropriate it does matter," Feldman said. Some victims feel they can never again log on and post intimate things about themselves.

Groups that are knowingly victimized often split into camps of believers versus disbelievers and stay focused on the dispute for months, losing sight of the group's purpose. Many groups shut down as a result of the deception.

Feldman cited several cases where people actually have staged their own "deaths" online, in real time. "One was a suicide; the individual was being actively challenged by others in his bipolar disorder support group. He seemed to instead use the group as a cruising spot. Several of the women discovered he'd arranged real-life trysts among different members. When he was accused, he typed and staged his suicide. That was followed by his "son" typing, "Oh, my God, my father just shot himself.

Group suspicions

"Several days later the group, which believed this actually occurred, had an online wake that the son attended. A couple of weeks later some of the less-gullible members of the group figured it all out; the fellow who had supposedly suicided then signed on and said, `You forced me to do this because of your lack of sympathy.' He was very blaming, very psychopathic."

Although not all cases are that dramatic, they do follow similar patterns.

For example, a person's story becomes more unbelievable over time; the posts duplicate material in other Web sites, posts or text books; characteristics of the person's illness are based on his/her misconceptions and are inaccurate; claims are contradicted by later posts or are disproved (calls to hospital can't confirm the patient is there); the person resists telephone contact or won't reveal other basic facts.

"I think it's a widespread problem," Feldman said. Studies estimate that every moderate-sized hospital has one Munchausen patient at any given time. In the online world, that number is probably higher. "It's much easier to do this online than in real life. And I think there are loads of cases where people are too smart and crafty to be detected but ultimately tire of the game and move on."
 

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