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WHEN ANDY BEAVER, A 42-year-old computer specialist in Toronto, began to experience a persistent twitch in his left hand last year, his doctor sent him to a neurologist. After some tests, Beaver was told he had ALS, or Lou Gehrig's disease, and had three to five years to live. The neurologist told him to go home and put his affairs in order, then scribbled down a telephone number with a reference for a second opinion. Then he shook Beaver's hand and wished him luck. "I was in his office for a total of about three minutes," Beaver recalls. "I stumbled back to work with a Post-it note in my hand, saying "ALS? Lou Gehrig? Three to five years?' "
So that night, Beaver logged on to the Internet. He began subscribing to an electronic mailing list -- part newsletter, part online discussion group -- for ALS patients. Beaver quickly found state-of-the-art medical information, an instant support group and a chance to discover just what he was in for: feeding tubes and ventilators. "It scared the bejeebers out of my wife and me," he says. But Beaver gradually came to depend on the group as a source of information and inspiration. He was reassured to find that some 15 percent of its 1,700 participants were health professionals.
Electronic mailing lists, online support forums and World Wide Web sites devoted to every conceivable disease have turned the Internet into a trove of medical information. For the newly diagnosed, and for those with chronic conditions, the information and emotional support found online can be invaluable. And the fact that cyberspace renders geography irrelevant is a boon to those with debilitating illnesses who would otherwise feel hopelessly isolated.
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Perhaps the most unexpected development is that more and more doctors are coming online as volunteer consultants. Clinicians and medical researchers are taking to cyberspace to advise online support groups, get an unfiltered view of patients' experiences and do what many of them entered the medical profession for in the first place: help people. "Being online is good for physicians because they get to see what's hot before it's even in the journals," says John R. Mangiardi, chief of neurosurgery at Lenox Hill Hospital in New York City and a participant in a popular mailing list devoted to brain tumors. "It's good for patients because they get interactive information." It was certainly good for San Diegan Bob Thomas and his 12-year-old daughter, Megan. Thomas posted a question about the nature of Megan's brain tumor to the mailing list. Within a day he had heard from six different specialists.
The time saved by getting answers online can be critical when patients are faced with what can amount to life-and-death decisions. When Monica Frydman, a 42-year-old language interpreter, was diagnosed with breast cancer last June, her surgeon recommended an immediate double mastectomy within two weeks, along with an extreme course of chemotherapy and the removal of adjacent lymph nodes. Frydman and her husband found the breast-cancer mailing list. Within a day, after hearing from a doctor and a prominent radiation specialist, they sought a second opinion from a doctor who agreed with the onliners that far less extreme treatment was needed.
Many physicians "lurk," which is cyberese for reading a discussion but not participating in it. By reading what patients say to one another in online forums, doctors say, they learn things about how patients are coping with an illness that would never be disclosed during an office visit. Although patients rarely discuss cosmetics with him personally, neurosurgeon Mangiardi saw people complain to one another on the brain-tumor list about unsightly scars left in their scalp following surgery. In response, he started using tiny metal meshes to conceal the disfigurement. As a rule, Mangiardi now avoids making large incisions. "If necessary, I'll go through someone's eyebrow to take out a giant tumor," he says.
Online eavesdropping can lead to specific help as well. When Carvel Gipson, a neurologist specializing in headaches, noticed that one of the participants in a headache and migraine discussion group was taking a medication for an unusual form of migraine, he warned her against taking it. Taken for the particular migraine she suffered from, the medication could cause paralysis, a fact the physician who prescribed the drug was unaware of.
Doctors in general have been slow to adopt online communications, and when they do go online, it's rarely to talk to patients. "Some doctors have freaked out when patients want to send them e-mail, or bring in medical reports that the doctors haven't even seen yet," says Tom Ferguson, a senior associate at Harvard Medical School's Center for Clinical Computing and author of "Health Online" (Addison-Wesley). "It doesn't fit the model they were trained in." Some doctors warn that online forums can stir false hopes. Two years ago, when a few ALS patients in the Boston area began an experimental treatment with Neurontin, a drug used for epilepsy, word spread throughout the online community and ALS patients everywhere began demanding the drug from their physicians. Before long, thousands of ALS sufferers were on Neurontin, hoping to slow the deterioration of their muscle strength. In formal studies conducted so far, a positive difference has been noted, but the effect is extremely slight and tests are inconclusive.
The Neurontin episode, though harmless in the end, highlights the speed with which information both good and bad can spread online. Not surprisingly, the Internet has become ripe territory for quackery. Purveyors of magic elixirs pop up everywhere, feeding on people's desperation. But the groups with a heavy presence of health professionals guard well against fraudulent claims. "My usual reply is "That's very interesting, could you show me some data'," says Loren Buhle, a former professor of radiation oncology at the University of Pennsylvania who created OncoLink, a popular cancer-related Web site. The father of an ALS patient in Florida recently asked forum members whether his daughter should have her dental fillings removed (at $1,000 each) after hearing claims that the mercury in the fillings caused ALS. Researchers on the list gently counseled him against it.
The credibility of online information can often be gauged by who's providing it. Web sites sponsored by universities and government agencies, and those where information has obviously been pooled and reviewed by a variety of people, are usually the most reliable. While careful not to prescribe drugs or treatment for fear of liability, or offer definitive diagnoses over the Net, doctors who go on the Net say they find a particular satisfaction in doing online what they often don't have the time to do when they see patients in person: answer people's questions and help them understand what's wrong with them.
FINDING THE RIGHT SPOT ON THE INTERNET FOR YOUR health concerns isn't as easy as you might think. There are more than 10,000 health-related web sites alone, and thousands more online support communities. For Web surfers, an excellent place to start is Yahoo's Health section (http://www. yahoo.com/Health), where you'll find a wealth of information on more than 2,000 sites. The Big Three commercial online service providers, America Online, CompuServe and Prodigy, are well known for their extensive health forums. Here are some other good places to go for medical information:
Medaccess: http://www.medaccess.com
OncoLink: http://www.oncolink.upenn.edu/
National Cancer Institute: http://www.nci.nih.gov/
HealthWorld (provides free access to MedLine): http://healthy.net/
Psych Central: http://www.coil.com/grohol/
Medinfo: http://www.medinfo.org
Breast cancer: Send the message "subscribe breast-cancer" followed by your real name to listservmorgan.ucs.mun.ca
Brain tumor: Send the message "subscribe braintmr" followed by your real name to listservmitvma.mit.edu
ALS (Lou Gehrig's disease): Send e-mail to brohuey.met.fsu.edu
Depression: Send the message "subscribe walkers-in-darkness" to majordomo world.std.com. Another list: send the message "subscribe depress" to listserv soundprint.brandywine. american.edu
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