Posted by dougW (208.181.136.67) on September 06, 2000 at 13:25:47:
I found this interesting, and I apologize in advance for the length, but too much was lost in any edits. From Medscape, as published in the Southern Medical Journal ( i have not included the references, if you want them let me know).
DougW
Munchausen by Internet: Detecting Factitious Illness and Crisis on the Internet and Crisis on the Internet
Marc D. Feldman, MD, Birmingham, Ala
[South Med J 93(7):669-672, 2000. © 2000 Southern Medical Association]
Abstract
Within the past few years, the Internet has exploded into a medium of choice for those interested in health and medicine. Along with the promise of immediate access to authoritative resources via websites, the Internet offers "virtual support groups" through formats such as chat rooms and newsgroups. These person-to-person exchanges, typically focusing on a specific topic, can be invaluable sources of information and compassion for patients and their families. However, individuals may misuse these Internet groups at times, offering false stories of personal illness or crisis for reasons such as garnering attention, mobilizing sympathy, acting out anger, or controlling others. I present four such cases and, based on experience with these and other cases of "virtual" factitious disorder and Munchausen by proxy, summarize indicators of factitious Internet claims and the reactions that participants usually experience once the ruse is recognized.
Introduction
The Internet has evolved into a massive repository of information, with 37% of users regularly accessing online materials related to health and medicine.1 With the recognition that anyone can "publish" information through a simple upload, questions have been raised about the reliability of these materials, particularly the evaluation and treatment recommendations that appear on many websites.2-4 Organizations such as the Health on the Net Foundation attempt to separate the virtual wheat from the chaff by analyzing and scoring websites according to objective criteria of accuracy and scholarship.5
Less attention has been accorded health-related claims and suggestions transmitted person- to-person over the Internet. Formats for such direct communication among patients, family members, and others include newsgroups and mailing lists; chat rooms, clubs, and communities; independent bulletin boards; Internet Relay Chat; private electronic mail (email); and discussions sponsored by websites. These interactions typically take place via the World Wide Web (WWW) or Usenet, a bulletin board system in which messages are arranged into categories. As McLellan6 notes, "[T]he topics run the gamut of the illness experience: the physical effects of chemotherapy, the jumble of emotions that chronic illness stirs up in families, the bureaucratic entanglements of clinics, hospitals, and insurance companies, miscommunication between doctors and patients, and gratitude for serendipitous acts of kindness." Although these posts can assist others by capturing the feelings and facts of illness and treatment, they usually lack the formal involvement of any health professional and are not subject to the fact-checking that commonly occurs in other media. Therefore, it is not surprising that, in their review of an online discussion group about repetitive strain injury, Culver et al7 concluded that a third of the advice given was unconventional, unconfirmed, or inappropriate.
The risk exists not only that faulty information will be imparted unwittingly, but also that cyberspace resources will be deliberately mis-used to garner attention and nurturance. Such online behavior can be viewed as a manifestation of factitious disorder or Munchausen by proxy (MBP).8 In these conditions, individuals willfully feign or induce illness in themselves or in others, respectively. Their goal is emotional gratification from commandeering the sick role.9 Instead of seeking care at numerous hospitals, these individuals can now gain new audiences merely by clicking from one support group to another. Under the pretense of illness, they can also join multiple groups simultaneously or establish different personae on a single group. False claims of victimization have also been conceptualized as a variant of factitious disorder10 or MBP.11 Fabricated reports of stalking,12 assault,13 harassment,14 and sexual abuse15 have been described in which the motive for the deceptions was mobilization of care and concern, and this manifestation has moved onto the Internet as well. These claims often include elements of pseudologia fantastica, in which one lies floridly about one's personal history, but in a manner that remains compelling.
The following four cases illustrate the misappropriation of the community of support online through the use of spurious illness or victimization. I was alerted to them by one or more of the deceived participants through my website on factitious disorder and MBP (http://www.munchausen.com), and the material was confirmed. Names have been changed to preserve anonymity, though having appeared on the Internet, the case information is a matter of public record. Individuals whom I asked to supply additional information have consented to its use in published work.
Case Report
Case 1. A person claiming to be a young woman posted messages to an Internet support group for those suffering from cystic fibrosis (CF). She said that she was in the terminal stages of CF and was at home waiting to die. She added that she was being cared for by her older sister, Amy, and that her dream was to die on the beach. Many CF patients and their families sent emotional messages back to her, sharing their own experiences and offering prayers. A few days later, Amy posted tragically that the girl, Barbara, had died, but that she had been able to transport her to the beach just in time. Group members were distressed by the news, but some did question the report that Barbara had been taken to a beach without having access to oxygen. They also noted that Barbara's constant spelling errors, which they had attributed to her being hypoxic and hypercapnic, were made by Amy as well. In response to questioning about these issues, the individual admitted that she had made up the entire story and taunted the group members for their gullibility. The lay moderator of the group alerted her Internet service provider, requesting a suspension of Internet access to the person using the screen name attached to the posts. He noted that the explicit intent of the group was to provide emotional support and information to CF patients, and that they had been distracted from this goal by the anger and betrayal caused by the hoax.
Case 2. A person describing himself as a 15-year-old boy began to post to a Usenet group for people with migraine headaches. His reports about his struggle with intractable migraines were moving, particularly in view of his youth and the unique personal qualities he described. Over time, Chris disclosed that he also suffered with hemophilia as well as a seizure disorder due to abusive head trauma his estranged father had inflicted. Despite these ailments and his brother's recent death from AIDS, he was performing superbly as a fourth-year medical student. His mother was described as deaf and his stepfather as alcoholic. Their lack of interest in his education resulted in his having to skateboard 3 miles daily to a bus stop to get to his medical school classes. His nighttime employment as a drummer at a nightclub was a useful distraction, however, and helped pay for his pain medication.
Although this information was provided only gradually, some group members could not escape the impression of escalating implausibility. It strained credulity that Chris played the drums even in the throes of a migraine. One group member privately emailed others, and Chris was gently questioned about some of the dubious information. In response, Chris's "mother" signed on and chastised the group for doubting him and subverting his faith in its caring nature. She warned that the questioning might precipitate a recurrence of the profound depression Chris had suffered in the past. As some continued to ask him questions (eg, the name of his medical school or even the state it was in), Chris complained that they had violated the "spirit" of the Internet and stopped posting to the group.
Case 3. In another case involving a false report of CF, Darlene, claiming to be the mother of a baby girl battling the disease, posted to a bulletin board for children with special needs. Erica, another mother of a CF child, responded warmly. However, she acknowledged feeling persistently guilty for not being able to extend herself more because her own child was seriously ill with respiratory syncytial virus (RSV). Once the child recovered, Darlene questioned her about RSV, and Erica provided details with the intent of assuaging Darlene's apparent concern. Weeks later, Darlene suddenly reported to the devastation of the group that her baby had just died of RSV. Erica recognized that Darlene's reports about the illness and its treatment were full of inaccuracies; in retrospect, she also realized that Darlene's comments about CF had simply duplicated material already posted. Many group members whom she alerted were unpersuaded, however, and several contacted the hospital and funeral home to send flowers and offer assistance. When they learned that no information existed about such a child, they were satisfied that Darlene's fakery was proved. Her posts abruptly ended.
Case 4. Frank and Glenda met in an Internet chat room and became friends, switching to communication via ICQ, a popular direct messaging program. The tenor of Glenda's posts changed as she talked about a bitter break-up with a boyfriend years earlier. Shortly thereafter, Frank received a message through her ICQ account that was ostensibly not from Glenda but from her father. He reported that Glenda had been assaulted at home earlier in the day, and that she had been screaming for Frank ever since. Frank offered to call the father in lieu of their typing back and forth, but he declined, claiming that he had promised Glenda that no such call would occur. Frank found his resistance unusual since he also stated that he was a police detective. As the communication continued, Frank noted remarkable parallels between his writing style and Glenda's (eg, the overuse of exclamation points and the absence of capitals). The father then said that Glenda wanted to talk to Frank alone and that he was going to leave the room. After a pause, Glenda appeared and declared that the ex-boyfriend was the perpetrator. As Frank asked additional questions, Glenda interrupted to insist that she had suddenly remembered her repressed past. She demanded that he not interrupt as she recounted a story of molestation, forced prostitution, homelessness, financial exploitation by her parents, and serial rape, culminating in her somehow being permitted to adopt two troubled teenagers. Frank noted profound inconsistencies in her tale, but she warned him that it would undermine her recall if he were to try to clarify details. Indeed, after providing her report, she claimed to have totally forgotten it and asked Frank to tell her what she had just said.
Weeks later, Glenda came online to report a sadistic physical assault and rape, this time by a family friend. After her report, a different friend named Hal took over the computer. Frank noted that Hal's word choices and punctuation duplicated those of Glenda. Without explanation, Hal declined telephone contact at the time but, pressed by Frank, scheduled it for the next day. When Frank called, Glenda told him that Hal had suddenly left town. He was never mentioned again.
Subsequent posts included two other assaults and claims that she had become severely underweight because one of the teens she adopted had misused her bank card, stealing $70,000 and leaving her with no money for food. Later, Frank was confronted online by a different ex-boyfriend, this one jealous, but his writing style also mirrored that of Glenda. Glenda claimed that he subsequently raped her.
Faced with the continual dubious crises, Glenda's refusal to provide any evidence of her claims, the unwillingness of rescuers to speak by phone, the uncanny similarity among their writing styles, Glenda's inaction in response to professed attacks, and an episode in which she admitted to impersonating her sister, Frank reluctantly recognized that he had been manipulated into expending vast amounts of time and displaying concern. Still, he has elected to continue to talk online with her from time to time.
Conclusion
There can be enormous benefits from the personal narratives of illness or crisis that are shared via the Internet. The Internet offers unlimited opportunities for patients--even those with rare diseases--to find like-minded and caring communities 24 hours a day. In particular, members of virtual support groups offer an instantly accessible conduit for information to be provided and isolation to be countered.1
However, these case reports illustrate that individuals sometimes go online to deliberately provide misinformation about their own medical and personal histories, and that they may do so because it is inherently gratifying. Like the factitious disorder patients and MBP perpetrators who make false reports to health care professionals, the only recognizable purpose to this behavior is to garner attention, mobilize sympathy, act out anger, or control others. Twenty-one such cases have been reported to me. From these, clues to the detection of false reports have been culled, and they are summarized in Table 1. As with factitious behavior as a whole, detection is particularly difficult when the content appears to mix fact and fiction. The common reactions after detection, both among the deceivers and those who have been misled, are listed in Table 2. In most cases, group members' discovery of the ruse leads initially to gentle questioning; the typical response is a protest of innocence and an allegation of cruel mistreatment by the group, followed by disappearance.
The false information can include personal histories, apparent recreations of conversations with physicians, reports of laboratory data and radiographic studies, and even claimed citations from medical publications. In addition to their providing time and emotional support, users who trust the information may use it to shape their own health care decisions. The betrayal is evident in the comments of one woman, who wrote:
The support group on the Internet is the only place I can go where others are experiencing life much as I am. I read the mail from those who can help with the illness and write to those whom I might be able to help. I rejoice in small triumphs, births, marriages. I grieve when we lose someone. My reaction to having been deceived is to be suspicious of new people to the list. I am not as confident about responding. An interloper arrived on our doorstep and my family welcomed her into the security of our 'home,' nurtured her, and offered all kinds of help. She lied to us and took advantage of kind people already overwhelmed by their own problems. I hope that I and others can put this behind us and still extend support to others who join the list.
She, like others, has recognized the need to question the veracity of online assertions and balance empathy with circumspection.
Health care professionals need to be aware of the range of medical information and communication formats on the Internet, since it may influence the questions asked and decisions made by their patients. These issues are expanding in importance as patients increasingly use the Internet to seek "teleadvice" 16 from physicians and others whom they have not actually met. Physicians who participate in online discussions, or counsel patients who do, must recognize and openly discuss both the potential and the peril of this new medium.
Reprint requests to Marc D. Feldman, MD, University of Alabama at Birmingham, Center for Psychiatric Medicine, 1713 Sixth Ave S, Room 433, Birmingham, AL 35294-0018.
Table 1. Clues to the Detection of Factitious Internet Claims
The posts consistently duplicate material in other posts, in text-books, or on health-related websites.
The length, frequency, and duration of the posts do not match the claimed severity of the illness (eg, a detailed post from some-one claiming to be in septic shock).
The characteristics of the supposed illness and its treatment emerge as caricatures based on the individual's misconceptions.
Near-fatal exacerbations of illness alternate with miraculous recoveries.
Personal claims are fantastic, contradicted by later posts, or disproved (eg, a call to the hospital reveals that there is no such patient).
There are continual dramatic events in the person's life, especially when other group members have become the focus of atten-tion (eg, as interest in one person started to wane in her group, she announced that her mother had just been diagnosed as terminally ill as well).
The individual complains that other group members are not sufficiently supportive and warns that this insensitivity is undermining his/her health.
The individual resists telephone contact, sometimes offering odd justifications (eg, it would be so upsetting as to cause a medical catastrophe, or the telephone lines in the building do not permit incoming calls) or making threats (eg, he/she will run away if called).
There is feigned blitheness about crises (eg, a cardiac arrest or assault) that will predictably attract immediate attention.
Others ostensibly posting on behalf of the individual (eg, family members) have identical patterns of writing, such as grammatical errors, misspellings, and stylistic idiosyncrasies.
Table 2. Common Reactions After Detection of Factitious Internet Claims
Among individuals who have misled others:
Protesting their innocence via email or telephone calls
"Scapegoating" group members (eg, "If you had been more supportive, I wouldn't have had to make up stories")
Abruptly disappearing from the group, sometimes only to engage in the same behavior elsewhere on the Internet
Admitting to the behavior, but either refusing to apologize or claiming that they cannot explain the reasons for it
Admitting to the behavior but castigating others for their naiveté
Among individuals who were misled:
Splitting into camps of those believing and disbelieving the claims
Remaining in the group to process feelings of anger, sadness, or shame
Leaving the group in disgust
Sending emails to the deceiver that express anger or sadness
Seeking retribution (eg, by contacting the deceiver's apparent employer or college)
Fantasizing about or attempting to arrange a face-to-face confrontation
Fearing that the deceiver will misuse personal information that had been volunteered in the past
Feeling amused by the sophistication and audacity of the ruses