A HISTORY OF CFS-L

posted on the Tenth Anniversary of the group
August 10, 1992 -- August 10, 2002
by Roger Burns

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In the beginning . . .

Before CFS-L was created, before the Internet was accessible to the general public, there was an electronic BBS that focused on CFS information run by dentist-cum-CFS-patient John Kossowan. The BBS was based on a personal computer in John's home. In the late 1980s people from around the world used their PCs to dial into John's computer to download files containing many medical and news articles that John had manually typed in by hand.

In later years more BBSs popped up and various computer networks were created such as the amateur-based Fidonet network which hosted the first worldwide electronic discussion group on CFS. There were also private networks which had similar CFS discussion boards such as CompuServe, Prodigy and GEnie, etc.

In 1992 I founded several CFS information resources on the not-yet-public Internet, most notably this CFS-L discussion group as well as the CFS-NEWS Electronic Newsletter. These were based at a government facility associated with my job (I was an economist at the U.S. Bureau of Labor Statistics), specifically the Listserv at the National Institutes of Health. When I left government service in the mid-1990s due to CFS, the CFS-L group was moved to St. John's University in New York City where it is located to this day.

The early days

In the first five months of CFS-L's existence, there were no rules and no moderators -- which is what I preferred since I wished to focus my own time on the CFS-NEWS newsletter. In its fifth month CFS-L had its first intense argument that was drove away a number of participants. It became obvious that without at least a few enforced rules, the hotheads would drive away most everyone else. Therefore out of necessity the group became moderated.

Around 1995-96 the new technology of the World Wide Web enabled the Internet to be easily used by average people who did not have a degree in computer engineering, and so the Internet moved away from being strictly governmental and academic and moved into the domain of the general public and the marketplace. (Old-timers may recall that before 1995 the Internet had NO spam. Those were the days.   :)

The Tides of Change

When the Internet was opened to the general public during 1995-96, CFS-L experienced an influx of a greater number and different kind of participant. At that time we also linked CFS-L to Usenet (specifically, our parallel newsgroup "alt.med.cfs"), a network that had its own culture of intense debating. Managing CFS-L became more than a single volunteer could handle, so additional volunteers were recruited.

Also, flame wars became more prominent during this time of change, and the old way of handling flames had to be revised. Originally, a moderator would openly engage a rule violator in a public discussion about a problem, so that everyone could see with their own eyes that the issue was being handled fairly by the moderator (albeit sometimes there was some additional background discussion with a flamer to expedite a solution). However, with the more intense flaming of that chaotic era of 1995-96, there often was also an increased resistance by flamers to being moderated. The old system of public moderating sometimes turned into lengthy, heated arguments. This added tension to the overall group.

A point came where participants actually publicly begged the moderators to permanently move moderating discussions into the background so that the average participant would not have to witness them, since public moderating was often becoming just as stressful as the flames they were intended to quash.

With some reluctance, I agreed to this change. I knew that long time participants would trust that the mods were conducting things fairly because they had seen open, public moderation for so long, and so they knew how fair the mods were. However, everyone who joined the group after the point when we shifted moderating into private discusions would never have seen the old fair and open process. All that the newcomers would know is that from time to time some people who were unfamiliar to them who seemed to have and claim authority for CFS-L would occasionally "lay down the law" in the background to those deemed to be rule violators.

So this created additional enmity since newbie hotheads would have no perception that the sentiment of the overall group was indeed backing the enforcement of the rules about no flames, etc. -- rather, all that they knew was that their druthers were being stopped by authority figures. (It's fascism, I tell you!)

As CFS-L's Group Manager, part of me wishes that we were back in the days when it was easier for the mods to openly earn trust by taking actions in public for all to see. But I know that the group is now better served with virtually all mod actions done in the background, despite the added friction this can generate.

Help arrives

With the tragedy of September 11, 2001, all of stjohns.edu's many discussion groups suffered a technical interruption, including CFS-L and others that serve a great many disease and disability communities. The telephone lines carrying our Internet messages had been cut when the World Trade Center was attacked on that date. The local telephone company in New York accepted a request from the CFS-L management on behalf the stjohns.edu community to expedite the restoration of service due to the charitable nature of our groups, and service was fully restored within 48 hours of the request. Our deep thanks to Verizon Telephone for their speedy assistance.

Volunteers make it work

We've had our ups and downs in this group over the years. The CFS-L discussion group works because of the hard work of the many volunteers who manage the group, who are ill themselves.

My name is Roger Burns, I am originally from New York and have lived in Washington, DC for most of my adult life. Before becoming ill I was a government economist and a local community leader. Barbara Fredsberg of Ontario has been our Assistant Group Manager through thick and thin during most of CFS-L's existence. Our moderators currently include: Judi Jech of Washington State, who has been helping to manage CFS-L in many capacities and for more years than just about anyone else; and also the multi-talented Felicia Jackson, RN of Missouri. David Wood of Bedfordshire, U.K. has been helping us with technical matters for many years.

Thanks also go to those who have volunteered in the past. Jim Dalton served as our tech support super-chief for several years. Sarah Howell was CFS-L's first co-moderator. Dorothy Roberts was our first assistant Group Manager, followed later by Ashley Allerton. Important work was also done by Ray Colliton, Bethany Wilson, Jane Sable, Hanni Hallen, Kathleen P., Marilyn Kerr, Karen Grant, Helen D., Patricia Morton, Rika Kageyama, Jean Harrison, Claudia Carroll, Natasha Dehn, Jennifer Vaudin, Marjorie Panditji, Linda Moon, Gerry Harris, Iris Read, Craig Hull, Lara Rooney, Linda Stolz, and Davey Kelso.

There are many others not listed here who also do vital work in the background, i.e. our monitor team and our software advisors group. And as mentioned, the distribution of the group's messages is sponsored by St. John's University of New York City, which over time has made a considerable donation of services.

The thousands of patients who have participated in CFS-L over the years owe all of these volunteers a great deal for their efforts in making this group an effective, and sometimes a vital, forum for exchanging information and support among CFS patients.

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