National MS Society goes on-line – National Multiple Sclerosis Society Forum

National MS Society goes on-line – National Multiple Sclerosis Society Forum – includes list of on-line services

In September, the Society launched the “National Multiple Sclerosis Society Forum” on one of the nation’s leading personal computer networks, America Online. The forum gives America Online subscribers instant access to a library of MS information, which the Society’s information specialists have organized to be user-friendly. The forum will also carry breaking NMSS news about new treatments, clinical trials, and techniques to empower people with MS.

The link that permits a personal computer to receive and send information “live” is that familiar electronic standby, the telephone. Computer and telephone make a powerful pair. National computer networks, like America Online, act as local “switchboard” permitting users to contract other users and to access information libraries in distant areas without paying long distance telephone charges.

“This is an example of how technology can serve people with MS,” said Mike Dugan, president and CEO of the National MS Society. “Negotiations are in progress for a similar service with Prodigy. Computer networks can link up MS households nationwide–for news, information, and self-help.” (By our publication date, NMSS may be online with Prodigy as well–Editor.)

Anyone who owns a computer and a modem (the device that actually connects a computer to a telephone line) can get free America Online software and free time to try out this service. Like other commercial computer network services, America Online charges a monthly fee. $9.95 buys up to five hours per month ($3.50 an hour if you go over five hours).

The on-line revolution

On-line services have been available for several decades, mostly to businesses or professionals who used them to research medical, scientific, or legal databases–large libraries for specialized information.

Today, information on many topics is availble to ordinary consumers via moderately priced commercial on-line networks. (See Box above.) News, sports, weather, personal banking, shopping services, and “computer bulletin boards” are included in their packages. There are also free nonprofit networks–free except for the long distance telephone charges that may be incurred if the network is beyond one’s area code.

Support groups without boundaries

“Bulletin boards” use the computer/modem technology to send and receive

messages from people with similar interests or needs. People with disabilities have been quick to realize what an opportunity bulletin boards represent. Thanks to impressive volunteer efforts by people with MS, all the major national networks have special-interest bulletin boards serving the MS and/or the disability community.

These bulletin boards function as support groups without boundaries or fixed meeting hours. Subscribers can dial their group and “talk” with each other day or night. Often an individual raises a question in an open message to the entire section — creating a “thread” that may go on for days or weeks as other members add their comments or raise related questions.

In New York City, neurochemist David Reiss is a volunteer section leader for Compuserve’s MS group; in Washington DC, INSIDE MS columnist Laura Cooper answers questions about civil rights issues on Prodigy’s disabilities bulletin board; and, in Virginia, the effort of health educator Elin Silveous were instrumental in creating the new relationship between the National MS Society’s Information Resource Center and subscribers to America Online.

These people are only three of a large and growing group of volunteers who share their expertise to make living with MS easier for members of their respective networks.

Electronic libraries

Libraries are different from bulletin boards: the NMSS Forum on America Online offers users access to resources of the Society’s Information Resource Center, as a database, or library. While bulletin boards encourage a free flow of opinions, library information cannot be “opened.” The NMSS Information Resource Center cannot answer questions on line–but it will continue to do special searches of both literature and professional databases to amplify the on-line text or to answer complex or unusual MS questions. Anyone may write to the IRC for this research service; on-line subscribers can post such requests on their system.

Every library document from the NMSS Society is dated and labeled so that anyone who sees it knows what it is and where it has come from. It can be “downloaded”–which means copied into a subscriber’s own computer, to be reread, printer, or even sent on to someone else. But wherever it goes, the text and its source remain unchanged.

Local bulletin boards

There are now literally tens of thousands of independent, noncommercial bulletin boards around the country, kept alive by computer enthusiasts. Most local networks are free and many are good sources of games, free programs, tips for users–and information on local political issues or events. Computer dealers often have telephone numbers and dial-up instructions for these groups.

COPYRIGHT 1993 National Multiple Sclerosis Society

COPYRIGHT 2004 Gale Group