The World of CFIDS Support ONLINE

Before I came down with CFIDS nearly four years ago, computers and I had a simple relationship: I hated them and they hated me. However, after spending a couple of years in bed suffering from CFIDS, the days began to really drag on and my steady supply of library books just wasn’t as fulfilling as it had once been. I eventually gave in to 20th century technology and purchased a computer. It was the best decision I’ve ever made.

Connected to a small $100 device called a modem, my computer now “talks” with other computers from around the country through an ordinary phone line. There are now many CFIDS-specific discussion groups that a computer user like myself can access. These “virtual” support groups consist of a stream of typewritten messages deposited by fellow CFIDS sufferers. The advantages of this approach over traditional mail are (1) messages to other sufferers are transmitted in seconds rather than days, and (2) since every message is seen by all of the other sufferers who visit the area, it is a true group experience. People get to know each other and share in a way that is very special—just like a “real” support group.

Earlier this year I got to know a woman named Molly Holzschlag from Tucson, Arizona who moderates an online CFIDS support group that I frequent. Since she had a lot of experience with online services, I asked Molly if she would be interested in being interviewed for an article. Molly agreed, and we got together in an electronic conference area where we instantaneously communicated through our keyboards—I would type a question from my home in Connecticut and she would respond in Arizona, with the resulting exchange displayed on our computer monitors. The following is the result of that exchange:

NETWORK: Hi Molly! I was wondering how you got started in computers in the first place? HOLZSCHLAG: Well, I had been sick with CFIDS for about five years when my brother gave me his computer when he went to upgrade to a newer model. Then, for Christmas, a friend gave me some communications software and a modem. I started playing around with the modem and became addicted!

You see, in addition to the commercial online services like CompuServe and Prodigy, there are thousands of privately owned computer systems around the country which are called Bulletin Board Systems (BBSs). BBSs are usually free to use and therefore a good place to learn. The BBSs are where I was helped by others to learn more and more, and in time I began to see that online services weren’t just fun, they were also a powerful tool.

NETWORK: So there are people available online who are willing to help the beginner! HOLZSCHLAG: Definitely! I found, and still that by and large the people online will go out of their way to help you learn. I think it’s because they have found the fun and value in computing and telecommunications and want to share that.

NETWORK: So if you went into a computer store and said, “Hi, I’d like to buy a computer and set it up to go online,” how much money would a person end up spending?

HOLZSCHLAG: Well, that’s a dangerous way to go about it because the market is so competitive. It’s a good idea to read some computer magazines and look around so you can get an idea of what your needs are. You might also talk with a friend or family member who is experienced with computers and get their advice. If you just walk into a store that sells computers with no idea of what you want, you may end up paying way too much money for features you will never use. A good salesperson will try and meet your needs, but the operative phrase here is “buyer beware”. I can’t stress enough that this is a good rule of thumb with computers. Figuring out the make of computer that will best suit you is the first and then you can go from there.

NETWORK: So once a person is all set up, what other things are available online other than the CFIDS discussion areas?

HOLZSCHLAG: Well, here you’ve hit upon the real advantage of online services. We call computer space “virtual reality” because it is virtually reality. In essence, anything you find in daily life is also available online: shopping, recreation, support and information services, education, business information, legal and medical information services, social groups, singles and adult-oriented services, etc. You can even send your loved one flowers or buy airline tickets and make travel plans. But what I like best is the friends I’ve made. They come from all walks of life, all races and nationalities, talents and interests. As a disabled person who doesn’t get out much because of CFIDS, this computer has given me a life!

NETWORK: And the nice thing about communicating online is that nobody has to know that you are sick—you can be a “regular” person if you want.

HOLZSCHLAG: That’s a very good point. Virtual reality is a fascinating thing because it strips away the outward appearances that may make certain prejudices appear. In other words, people learn about your thoughts and ideas before they learn about your physical qualities or differences. This may not sound like much, but I think it creates a profound difference in the way people interact with each other. A good example of this difference is my friend who is a very beautiful and bright woman who happens to be overweight. In virtual reality, people don’t see the weight first, they see the brilliance. They are forced to look beyond what might be an unconscious prejudice and into the substance of the person.

NETWORK: Yes, I’ve had some wonderful exchanges with people who I would never have had a chance to meet otherwise. The funny thing is that I could pass some of these people on the street tomorrow and not even know that it was them I was talking with.

HOLZSCHLAG: Online services can also help you make friends in your area, as you can interact with people nearby on a local BBS. The nice thing about this is that you can actually meet people. For the single CFIDS patient, or the couple that works a lot and can’t get out to socialize, making friends online is a good way to increase your local support system. People have even met and married though relationships that started online!

NETWORK: Really!?! Wow, that possibility is sure to get more people online! : ) Hey, I was wondering if you could explain to our readers what these little symbols like : ) mean.

HOLZSCHLAG: This has to be one of the most intriguing things about virtual reality. Stripped of the ability to use body language and facial expressions, an entire system of symbols (known as “emoticons”) has evolved to enhance the written, or, in this case, typed word.

Some popular examples of this include the most widely used emoticon, the smiley face J Tilt your head to the left, and sure enough, there’s your smile. Other popular emoticons are the frown : ( and the wink and smile ; ) There are thousands of emoticons, but these are certainly the most widely used. Essentially, there is an entire language online, making it truly a culture.

NETWORK: Molly, thank you so much for taking the time to be interviewed today.

HOLZSCHLAG: This was a lot of fun, and I really would like to say that if people have a computer, or want to get one, there is a wonderful world out here to explore and experience. It’s a world that has enriched my life in terms of providing me with information, support, and, most importantly, dear friends such as yourself. Our lives have been truly enriched by a friendship that exists in this amazing place we call virtual reality.

Reprinted with permission from Network, Fall 1993, newsletter of the Connecticut CFIDS Association, Inc.

Getting Online…

Once you have a computer, modem, and communications software, the next step is to choose a commercial online service which has a formal Chronic Fatigue Syndrome discussion area. Currently, Prodigy 1-800-776-3449, GEnie 1-800-638-9636, and CompuServe 1-800-848-8990 have such areas and you should call them to ask questions.

CFIDS-specific discussion areas, information files, articles, electronic newsletters and much more are all retrievable online. For a complete listing of all that is available I and how to get it, please send a self-addressed, stamped, legal-size envelope to:

CFS/ME Computer Networking Project

P.O. Box 11347

Washington, DC 20008.

If you are in Canada, send the envelope to:

CFS/ME Computer Networking Project

3332 McCarthy Road

P.O. Box 37045

Ottawa, Ontario K1V 0W0

Those outside the US and Canada may send to the US address and include an international reply coupon.

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