Date: Tue, 23 Jan 1996 13:46:57 -0600 From: Mike Miller <[log in to unmask]> Subject: Cyberquacks are spreading misguided medical info Cyberquacks are spreading misguided medical info Copyright ) 1996 Nando.net Copyright ) 1996 N.Y. Times News Service (Jan 22, 1996 6:33 p.m. EST) -- When you have a world of health information literally at your fingertips you're in the driver's seat. This is the upside of the Internet. People with troubling diagnoses can get ideas on what to do next, where to get help, what new drugs are being tested, etc. Doctors and researchers can comb the world for suggestions on handling difficult cases, and everyone can become more savvy about prevention and treatment. But the Internet has a downside too: Cyberquacks travel the information superhighway right alongside the sincere folk. "There's a lot of good information on the Internet, but you have to know whence it comes. You simply don't know who you're talking to," says Dr. John Renner, Internet veteran and director of the Consumer Health Information Research Institute in Kansas City, Mo. Quacks on the Net exploit the system's "tremendous capacity to hide behind a pen name and make up stories," Renner says. "It's a storyteller's blank tablet." "Quackery comes in two forms," says Larry Lindner, executive editor of the Tufts University Diet & Nutrition Letter, which recently published the results of Tufts' investigation into on-line nutrition information. First, there are the outright scam artists. Their primary goal is to separate you from your money. Cleverly disguised advertising may sound like earnest testimonial -- "My Aunt Sally had the same problem, but now she's completely cured" -- or it may be more subtle. When you ask for more details, you find out they're pushing a product for profit. The second -- and perhaps more dangerous -- breed of quacks spread misinformation they sincerely believe to be true. "They think they have something straight," Lindner says, but in reality they've misinterpreted something they've read or are merely passing along old wives' tales. With respect to product peddlers, they may "pretend to be patients when they're really distributors," says Renner. Also, credentials -- such as "M.D." or "Ph.D." after a signature line -- are often hard to verify and may be falsified. One promoter claimed on the Internet that: "Oxygen/ozone therapy has been used in Europe for over 40 years. It is very inexpensive and has outrageous success in treating many viral diseases, including cancer and AIDS." According to the message, the therapy is safe, effective and "has next to no side effects." The promoter also said that the reason relatively little is known about ozone therapy in the United States is because the Food and Drug Administration is committed "to the drug companies." If you think this sounds like a big come-on, you're right. At least assertions about ozone therapy in magazines usually appear with the word "advertisement" at the top of the page. The Internet offers no such red flag. Internet messages usually end with a suggestion: "e-mail me for more information." Be prepared: If you send that follow-up e-mail, you are opening the door to a sales pitch. One supplement-peddling advertisement on the Net extolled the benefits of blue-green algae. The couple featured claimed it helped them lose 10 pounds each, increased their energy and detoxified their bodies. Unfortunately, according to the Tufts report, blue-green algae is basically pond scum -- the same stuff you see floating on lakes and stagnant pools of water. It has no proven value for weight loss or any other health problem, according to the report. Although major on-line services such as CompuServe, America Online and Prodigy try to weed out blatant advertising, the sheer volume makes it impossible to guard the Internet's public message boards all the time. Health forums and newsgroups are sections of the Internet where messages and documents describing remedies are posted and copies of journal articles republished. However professional they seem, according to Lindner, health forums and newsgroups are "a veritable minefield of misstatements, half-truths and downright falsehoods." Unlike in-person conversations -- where automatic baloney-detection systems kick in -- on-line conversations often suppress skepticism. Why? Because the words are written instead of spoken. Even educated people still tend to think the written word is gospel, Lindner says. What if the posted message comes from a "true believer" sincerely trying to help? "Sometimes those are even more dangerous pitches" because they're so convincing, Lindner says. People who post sincere messages "are not trying to lie to somebody or do something subversive, but their advice is just as much quackery as that of the person who is trying to deceive," he adds. Need to cure rabies? One earnest message reports that the "ancient manuscripts" -- this term is usually a red flag for quackery -- recommends taking the liver from a rabid dog and feeding it to a rabies patient. A section of the Internet that picks up medical threads from various newsgroups -- such as alt.sci.medicine -- recently circulated responses to a tapeworm remedy that a doctor supposedly recommended: Drink a 40-ounce bottle of Thai whiskey to elevate blood alcohol levels high enough to kill the tapeworm, then excrete the dead worm and vomit the alcohol so it doesn't kill the patient too. Fortunately, numerous responses rationally explained why this dangerous treatment couldn't possibly work. "I think that story is on the same par as starving yourself for several days and then holding food in front of your open mouth, thus coaxing the tapeworm to crawl out," one respondent said. To balance the true believers, many common-sense messages are posted by Net-surfing physicians and medical professionals. Some of the larger newsgroups on the Net are moderated or supervised by reputable medical organizations, such as the Muscular Dystrophy Association, the American Cancer Society and the American Diabetes Association and others. Nevertheless, we all need to keep our quack-detectors alert. People consistently fail to distinguish between valid scientific knowledge and superstition, says Barry Glassner, chairman of the department of sociology at the University of Southern California in Los Angeles. Glassner is monitoring medical messaging on the Internet for a book he's writing. Reliable medical facts are often mixed with gossip or folklore in the same message, he says. Lindner worries that people will rely so heavily on quack facts that they might delay consulting medical professionals or give up on them altogether. Desperate people are the most vulnerable to quackery, he says. "That may be true," says Dr. Tom Ferguson, a believer in self-care and a senior research associate at the Center for Clinical Computing at Harvard Medical School in Cambridge, Mass. "But the benefits are going to far outweigh the drawbacks." If people have access to the same information doctors use, they can challenge doctors' orders, take more active control of their own treatment -- even find important resources their doctors might have missed, Ferguson says. If you want to check up on something you read on the Internet, or if you have been harmed by something advertised or posted on the Net, call the Consumer Health Information Research Institute at 816-228-4595. (Peggy Noonan is a contributing editor to Longevity.) ------------------------------