Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

Munchausen by Internet

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Have you heard of this? It isn’t exactly in the DSM, but it’s an interesting concept.

Munchausen by Internet is a type of factitious disorder which utilizes the Internet’s easy access to a broad audience. […] The term was coined by Marc D Feldman, M.D., in 2000. It specifically relates to Munchausen Syndrome – where a sufferer fakes or induces illness to gain attention and sympathy – and Munchausen Syndrome by Proxy (MSbP), where the sufferer creates fake illnesses in others, or physically harms others. Sufferers of MSbP are often parents who inflict fake illnesses on their child, or children. Munchausen by Internet

Munchausen syndrome differs from hypochondria in that sufferers – or should I say ‘sufferers’ – actually know they aren’t ill and are faking for attention, where as hypochondriacs genuinely believe they are ill when they aren’t (or, in the case of man-flu, they believe they are dying when they get a cold).

Munchausen syndromes can be very serious. Beverley Allitt, the child-killing nurse dubbed ‘the angel of death’, who is imprisoned in a secure mental hospital not so many miles from where I live, is alleged to be a sufferer of Munchausen by Proxy. However Munchausen’s diagnoses are a point of controversy, poor Sally Clark, Trupti Patel, Angela Cannings, and many other mothers were wrongly accused and convicted of baby murder on the basis of a theoretical diagnosis of Munchausen by Proxy by the discredited paediatrician, Professor Sir Roy Meadow.

So let’s hear the stories behind Munchausen by Internet.

When Pam Cohen, a 41-year-old bereavement counselor, first heard about the Kaycee Nicole Swenson hoax, her first thought was Munchausen.

Kaycee was a 19-year-old Kansas woman who chronicled her painful battle against leukemia on a Web log. The site elicited a sympathetic following of well-wishers, who collectively grieved over Kaycee’s death on May 15.

When it was revealed that Kaycee was actually 40-year-old Debbie Swenson, a very-much-alive homemaker in Peabody, Kansas, The New York Times declared it an elaborate Web hoax.

But to Cohen, Swenson’s “hoax” sounded a lot like Munchausen by Internet, a recently identified mental disorder where sufferers go into chatrooms and other online communities, pretending to be gravely ill. Cohen, who became romantically involved with a Munchausen sufferer she first met in an online support group, describes the experience as “emotional rape.”

Munchausen Syndrome is the severest form of what is known in medical circles as factitious disorders, where a patient feigns, exaggerates or self-induces illness. Known among doctors as “black hole patients,” “ER jumpers” or “heart sinks,” people with Munchausen often go to desperate lengths to prove they are sick. They Think They Feel Your Pain

You know, about a year and a half ago there was an individual on the support forum who took up a lot of everyone’s time and attention and seemed intent on causing as much disruption as possible. She had alleged ‘reactions’ to totally non-reactive things – for example to phenolic plastic handles on cookware, i.e. to bakelite(!) At the time I simply thought she must be reacting to something in her diet and just humoured her. She was making so many mistakes I didn’t want to make her look even stupider.

Most tellingly, there was the fact that his life was so dramatic. That’s a key sign of what some have dubbed “Munchausen by Internet.” His mother died of cancer when he was a child. His father abused him. He was raped in his apartment, and then again, in the parking lot of the hospital where he supposedly worked. He threatened to kill himself if he didn’t pass his exams. His cousin was hit by a car – on his birthday. Despite the fact that a few days before Christmas the cousin was on death’s door, he recovered enough that he was home by Christmas. His friend donated bone marrow to two people (when I’ve been in the database for ten years, and haven’t been called once). He saved a Russian mail-order bride from a botched abortion. And much more. Taken all together, it just didn’t seem likely.

At this point, you’re probably thinking I’m a complete idiot for not catching on earlier. A Strange Case of Munchausen by Internet

The individual on our support forum took a couple of trips to the ER for absolutely frivolous reasons and made a huge deal out of this, as if her symptoms were life-threatening when they barely warranted a trip to a local doctor. Yet at other times she acted so blasé about it all. She had all kind of weird, warped theories about food chemical intolerance and it was very clear she didn’t even have a basic understanding of chemistry or biology, though she often tried to blind other forum members with long pseudo-technical ‘explanations’ to justify her strange theories. Her behaviour was so puzzling, contradictory, and erratic, that I questioned privately whether she was a hypochondriac. My other theory was that she was bipolar, to the point where she was experiencing thought disorder. She and a second individual, who at the time acted as her enabler, were the catalyst for my leaving the forum for several months. I was absolutely crushed by the experience.

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.” Sympathy-Seekers Invade Internet Support Groups

Let’s face it. You can’t get more esoteric than food chemical intolerance. It took me years to figure out what was wrong with me. Most of the people I’ve come across who have this problem have spookily similar symptoms to me and I can tell instinctively that they are genuine sufferers because of the way they talk about their experiences. Sometimes, however, you come across people who just don’t add up.

Clues to Detection of False Claims

Based on experience with two dozen cases of Munchausen by Internet, I have arrived at a list of clues to the detection of factitious Internet claims. The most important follow:

  1. the posts consistently duplicate material in other posts, in books, or on health-related websites;
  2. the characteristics of the supposed illness emerge as caricatures;
  3. near-fatal bouts of illness alternate with miraculous recoveries;
  4. claims are fantastic, contradicted by subsequent posts, or flatly disproved;
  5. there are continual dramatic events in the person’s life, especially when other group members have become the focus of attention;
  6. there is feigned blitheness about crises (e.g., going into septic shock) that will predictably attract immediate attention;
  7. others apparently posting on behalf of the individual (e.g., family members, friends) have identical patterns of writing. Munchausen by Internet: Faking Illness Online

I don’t know whether the individual in question had Munchausen by Internet, though reading through this list I can see she met most of the criteria. Due to her erratic emotional behaviour I am still leaning towards some kind of bipolar/manic scenario with a touch of hypochondria and paranoia thrown in. Whatever the truth, the individual had a major hissy fit when her theories were disproved, and she left the group. She later appeared on a more altie, less scientific forum where she was accepted with open arms by chronic lyme disease sufferers and GAPS dieters alike, having claimed to have ‘cured’ herself with vitamins. The story changed over time, and more recently she claimed to have ‘cured’ herself with aryuveda. Lately, she has ‘cured’ herself with (wait for it), the bacterial recolonisation of her gut.

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Written by alienrobotgirl

23 September, 2008 at 10:39 pm

Posted in Quacktitioners

2 Responses

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  1. Ugh, some of those stories are pretty heinous. Faking cancer, cystic fibrosis, death? Horrid.

    I would lean more toward a borderline personality issue rather than bipolar though. Manipulation, dramatics, attention seeking, the snap-your-fingers unlikely cures all seem to point toward an inner dependency-self conflict which is more borderline than it is bipolar. It’s more borderline to manipulate others to fulfill a gap than it is bipolar IMO. Then again some people think borderline is a form of bipolar so *shrugs* who knows.

    itsthewooo

    24 September, 2008 at 5:31 am

  2. You know Woo, looking at the DSM criteria, I think you might be right. The dramatics, attention-seeking, hypochondria, doing the opposite of what she was advised, taking everything to an extreme, and then coming up with a succession of silly ‘cures’… It kinda fits.

    alienrobotgirl

    24 September, 2008 at 12:35 pm


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