COLUMN ONE : An On-Line Medical Mishmash : Cyberspace bulletin boards offer support and advice on health. But professionals say much of the information is unproven, wrong and even dangerous.

The medical clinics of cyberspace are open around the clock.

From cancer treatments to weight loss concerns to the latest research on life-threatening disorders, Americans who subscribe to any of the nation’s on-line computer services are finding a wealth of information in the hundreds of “forums,” or bulletin boards, on health.

On a given evening--the most popular “talk” time--someone with multiple sclerosis might find out how to apply for an experimental drug treatment. Or a newly diagnosed diabetes patient can get information on blood-glucose testing.

Around the country, health forum subscribers are busy playing doctor, exchanging tips on a range of diseases and conditions.

And that is what has many health professionals worried.

The forums, many doctors say, are chock-full of inaccurate, unsubstantiated, even dangerous, advice. Although some networks, such as one set up by the Muscular Dystrophy Assn., are supervised by qualified professionals, many of the forums represent entirely unregulated entities in which consumers exchange medical advice and information without the benefit of medical records, scientific credentials or even personal experience.

Much of the advice in health forums is “a veritable minefield of misstatements, half-truths and downright falsehoods,” said Larry Lindner, executive director of the Tufts University Diet and Nutrition Letter, which recently conducted an investigation into on-line health forums.

On-line services spokesmen say they are responsible for providing information lines for the forums, not for policing the content. Because neither the government nor the on-line services monitor the content for scientific accuracy, consumers have to decide for themselves if the information they are reading is valuable.

“I think there are some useful things about on-line health services, but people are going to have to understand the danger in it,” says Dr. John H. Renner, a physician who runs the Missouri-based Consumer Health Information Research Institute, which monitors health fraud. “It now takes a few seconds to spread misinformation faster and farther than we ever knew.”

On the other hand, many consumers say the forums serve as support groups for people who are too sick or too embarrassed about their disorder to leave home. And they note that bulletin boards enable access to the latest developments in the fast-moving field of medicine--often posting information even before it is published in medical or health journals.

But health educators cite an increasing tendency for users to dispense advice that may be well-meaning but can also be inaccurate or harmful. Moreover, they say that the forums are easy targets for quackery and sly salespeople pitching dubious health products.

They fear that people who should be seeking a doctor’s advice in a good, old-fashioned office will instead seek help in a non-credentialed “clinic” in cyberspace--which at about $3 per hour is considerably cheaper than going to the doctor.

Moreover, the reach of on-line services is growing and taking a progressively greater role in people’s lives. With 6 million Americans subscribing to on-line services, there is a forum for almost every medical disorder and health topic. With the number of subscribers expected to soon double, predictions that on-line computing someday will be Americans’ primary source of information are not without support.

“In some cases, it’s the totally uninformed leading somebody that is innocent and hopeful and looking for information,” says Ira Milner, a registered dietitian who contributed to the Tufts investigation. “Giving people false information is potentially harmful. Giving them propaganda with a deliberate agenda--especially when the person receiving it doesn’t know it’s propaganda--can be very dangerous.”

Renner says he has compiled a list of quacks who mine on-line health bulletin boards and adds that he receives frequent complaints from consumers who say they have been misled.

He recently got a call from a man who had tapped into a discussion on the Internet--the system that links on-line users around the world--on whether ingesting tapeworm could help people lose weight

“This man was trying to figure out if there was any scientific basis for this theory,” Renner said. “Tapeworm for obesity is old-time quackery. If one of those things got caught up in your liver, lung or heart, it could be fatal. But when people get on Internet and raise issues like this, some people think “Gee, that sounds like a good idea.’ There are so many people desperate to lose weight.”

Although desperation may be a factor for many, a need to share one’s plight seems to drive more people to computer health forums.

Jane, a Los Angeles woman who asked that her real name not be used, had struggled with a chronic, painful bowel disease called ulcerative colitis. Despite her frequent need for bed rest, she rarely felt she could share her illness with friends and colleagues.

But in the quiet privacy of her home, Jane found the support and understanding she craved by tapping into a colitis forum.

“Colitis is not a topic you talk about at the dinner table,” she says. “So for people with the disease, the colitis forum represents an acutely needed source of support, understanding and information made anonymously and yet in a friendly atmosphere.”

But, she admits, the forum also hindered her health. One evening, she followed a discussion of patients who were telling of terrible reactions to a particular medication, which Jane’s doctor had been trying to convince her to take. She decided to shun her doctor’s recommendation.

“I read this stuff and I got scared to death,” she says. “But I didn’t know the dosages these people were on. It turns out they had much more severe cases than I have and were on very high dosages.”

She later went on the medication, which significantly improved her health. Still, the Los Angeles woman concluded: “There is more good about health on-line than there is bad.”

The health field has long been a target for fraud and quackery because disabled and sick people are so often just as Renner described: desperate.

Sales pitches for scientifically unproven products and misinformation seem most common on forums set up for people with HIV, cancer and obesity, says Lindner, whose staff spent 60 hours exploring three major on-line information providers--America Online, Prodigy and CompuServe--as part of the Tufts investigation. The report was published in the January issue of the newsletter.

The investigation turned up, among other things, a man who called himself a doctor but actually had a Ph.D. from a bogus college, and sales pitches for chromium picolinate, a weight loss supplement that has not been scientifically proven effective.

A husband and wife touted a supposed appetite suppressant called Super Blue Green Algae on CompuServe’s Health and Fitness Bulletin Board, saying, “We each lost 10 pounds in one month.” What the couple didn’t say, Lindner says, “is that Super Blue Green Algae is just pond scum that does nothing to assist in weight loss.”

A less typical but potentially far worse abuse of health bulletin boards is when people claim to be passing on personal experience when, in fact, they are selling a product that may not be scientifically sound.

“What these sales people will do is periodically scan for new members,” Milner says. “They will message a new subscriber and say, ‘There is some new research I’d like to share with you if you want to call this phone number.’ ”

But are on-line conversations any more harmful than other ways in which people communicate? Even Dr. Stephen Barrett, a noted investigator of health fraud and author of the new book, “The Vitamin Pushers,” (Prometheus Books), says consumers aren’t any more gullible in cyberspace than they are at a social gathering.

“There is certainly a lot of bad advice on it, but I don’t think what is communicated there is any different than what is communicated on talk shows, magazines, newspapers and letters to the editor,” Barrett says.

But Jaclyn Easton, host and producer of Log On L.A, a weekly radio show on KIEV-AM devoted to on-line computing, says that the comfortable, solicitous environment of cyberspace may make subscribers more accepting of the information.

“On-line is a very friendly environment. We tend to accept things with more vulnerability,” she says.

It is that intimacy and immediacy that also attracts people to the hundreds of health-related on-line bulletin boards. Norm Stuart, a Los Angeles man who has HIV, says many people with the virus log on to HIV forums for the latest news in AIDS research and treatment.

He recalled one exchange over an HIV forum in which a subscriber posted a message that he was going blind from ocular cytomegalovirus, a complication of AIDS.

A number of subscribers quickly responded, recommending he undergo a treatment that only a few doctors in the country were offering. The patient’s doctor knew nothing of the treatment but agreed to check into it. Eventually, the patient was referred to a doctor doing the procedure “and it saved his eyesight,” Stuart said.

People with HIV have been particularly aggressive about sharing information that has not yet been published in scientific journals. Although this vastly speeds up the dissemination of information, it can also be hazardous because it may be premature.

A frequent source of conversation in recent HIV forums, for example, touts the use of anabolic steroids to treat the symptoms of AIDS. But no studies have yet been published on the effectiveness of the treatment, says an official for the American Foundation for AIDS Research.

Trends and fads tend to crop up regularly in the nutrition and diet forums. In several alternative health and nutrition forums, members have long been discussing the benefits of Kombucha, a gelatinous fungi that is used to make a tea; its proponents say it promotes good health. The popularity of the health fad only recently hit the popular press.

“Kombucha was on the Internet long before it reached other media,” Renner says. “But I have seen almost no accurate information on it; only a lot of hype with only a few warnings.” Like other medical experts, Renner says he is concerned about the dearth of studies on Kombucha and its effects on people with weak immune systems.

With the exception of outlawing vulgar language, the on-line services grant bulletin board operators wide freedom to do what they please. As such, safeguards protecting subscribers are optional--and rare.

Forums are created by a person or organization with a particular interest who pays the on-line service a fee. The owner typically hires someone called a systems operator, or sysop, to manage the forum.

The information transmitted on a forum is only as credible as its sysop, Milner and other health professionals say. And, consistent with the forum system in general, there are no formal qualifications for a systems operator.

“It boils down to who is running the forum. For example, vitamin pushers and quacks don’t last too long on the Diabetes Forum on America Online because the sysop for that forum doesn’t tolerate that nonsense,” Milner says. “The members of that forum are committed to good information.”

For example, a sysop closely monitoring a forum might intervene when false information or sales pitches are aired by rebuking the sender in a message.

However, some sysops follow an anything goes approach, says Milner, who recently posed as a consumer and asked a sysop a question about using vitamin supplements to treat lung cancer.

“The sysop said there were supplements for lung cancer and wrote back with a whole list,” Milner said. “He even described a wacky mixture of flaxseed oil and cottage cheese. He recommended an herbal treatment that has been disproved for decades because it is toxic. It’s being offered in a bogus cancer clinic in Tijuana. This kind of thing is a disgrace.”

When the Muscular Dystrophy Assn. set up a forum on CompuServe last summer, they chose sysops who were experts on neuromuscular disorders. They also took the unusual step of asking new users of the forum to read a disclaimer stating that none of the information exchanged should substitute for actual medical advice from one’s personal doctor.

“This is not a substitute for them going to their doctor,” says Jim Brown, director of public affairs for the MDA.

When researchers and doctors are invited to “appear” on forums to answer questions, they are cautioned to refer people to their personal physicians to verify information or advice, Brown says. And when a discussion among subscribers tends to veer into questionable areas, sysops intervene.

“We monitor the forum and make sure whatever is being said is appropriate,” Brown says. “We realize how easily it could be a problem if you don’t monitor it closely.”

Still, because so many people with neuromuscular disease have limited mobility, being able to tap into a source of information and support within their own homes is a godsend, he adds.

“I think what the MDA does is good practice for everyone (who operates a health forum),” says Michelle Moran, a spokeswoman for CompuServe. “I do think there are wonderful benefits to the health and nutrition forums. Someone might have a rare disease or need a drug that is rare. . . . But when it comes to any information, I would check it out.”

Nevertheless, officials for CompuServe, America Online and Prodigy maintain that they only provide the space for information exchanges and that forum owners and sysops are responsible for what goes on in that space.

“We are providers of open areas for open expression,” says Carol Wallace, a Prodigy official. “If we get a complaint about information we will review it, and if we simply find it to be incorrect or not of popular opinion (but not vulgar or inflammatory), we leave it up” on the bulletin board.

Wallace suggests that subscribers usually speak up when they see questionable information. But Milner says that health professionals who scan the bulletin boards often feel their presence is not wanted and they are better off lying low.

“I have spoken to health professionals who have tried to correct misinformation, and they get frustrated because they get attacked by people in alternative medicine camps,” he said.

“The only answer right now, is that you have to watch out for yourself.”