What is CFS? [Jump to the Quick Index]
Chronic fatigue syndrome (CFS) is an emerging illness characterized by debilitating fatigue (experienced as exhaustion and extremely poor stamina), neurological problems, and a variety of flu-like symptoms. The illness is also known as chronic fatigue immune dysfunction syndrome (CFIDS), and outside of the USA is usually known as myalgic encephalomyelitis (ME). In the past the syndrome has been known as chronic Epstein-Barr virus (CEBV).The core symptoms include excessive fatigue, general pain, mental fogginess, and often gastro-intestinal problems. Many other symptoms will also be present, however they will typically be different among different patients. These include: fatigue following stressful activities; headaches; sore throat; sleep disorder; abnormal temperature; and others.
The degree of severity can differ widely among patients, and will also vary over time for the same patient. Severity can vary between getting unusually fatigued following stressful events, to being totally bedridden and completely disabled. The symptoms will tend to wax and wane over time. This variation, in addition to the fact that the cause of the disease is not yet known, makes this illness difficult to diagnose.
Further information about CFS can be found in the CFS FAQ. Information for physicians can be found on the Doctors CFS Page.
What CFS resources are available on the networks?
There are on-line CFS discussion groups, newsletters and file databases on Internet, and off. Similar resources are available on commercial networks, Free-Nets and free (or low-cost) BBSs. Several on-line documents describe these resources in detail (see below).
[Jump to the Quick Index]On Internet
It is strongly recommended that everyone who has Internet e-mail should get on the distribution lists for the CFS-NEWS Electronic Newsletter. This is a good source of up-to-date medical news about the illness. There is also a Canadian ME/FM newsletter.Regarding the World Wide Web, many excellent CFS resources are catalogued in this document and its companion Quick Index. A very comprehensive directory of web sites can be found at the M.E. Web which is sponsored by the M.E. Lobby of the Netherlands.
There are many CFS-related discussion groups available on Internet. There is a general CFS patients discussion group, a Fibromyalgia group, both quite active, and a CFS advocacy/lobbying discussion. The CFS and FM groups enable an exchange of news, information and support among patients that has grown to be very important to the participants. The groups just mentioned all are accessible both by e-mail and as Usenet newsgroups. There are also private, email-only groups for doctors and for young patients. The immune group discusses several immune dysfunction illnesses that appear related, including CFS, multiple chemical sensitivities, Gulf War Syndrome, and others. There is a Dutch language group that discusses ME/CFS, Fibromyalgia and Lyme Disease.
Several file servers are available on the Internet that contain the text of medical articles, newsletter archives and other useful documents. The CFS-FILE database has many files and can be accessed by e-mail, and web access will be restored later this year. The smaller CFS-D file base can be reached by e-mail. The files at the Alternatives BBS and the Project ENABLE BBS can be reached via ftp.
Internet Relay Chat (IRC) enables a live, real-time conference among patients, and the #CFS channel on the Undernet IRC network is frequented by patients most hours of the day. Other CFS information resources are accessible by telnet and gopher.
Commercial networks, Free-Nets and BBSs
The major commercial networks (Prodigy, CompuServe, America Online, etc.) each have CFS sections with information files and discussion groups. Free-Nets give access to many Internet resources at low or no cost, for those metropolitan areas that have them. And there are Bulletin Board Systems (BBSs) that give free access to a world-wide CFS discussion group that can be reached by a local phone call from virtually every city and town, although the exchange of messages are much slower than those on Internet. These resources are described in the "CFS/M.E. Electronic Resources" guide mentioned below.Network resource documents
The "CFS Network Help" file gives a detailed description of CFS resources on Internet and Usenet, including a discussion of Listserv. The "CFS Mailing Lists" file contains descriptions of many discussion groups and newsletters on Internet.The CFS/M.E. Electronic Resources guide explains how to access computer networks and points to where CFS information and support can be found on all of the major networks. Another helpful document is the "Low-cost Access to Computer Networks" article. These documents have been developed by the CFS/M.E. Computer Networking Project.
CFS/M.E. Computer Networking Project
The CFS/M.E. Computer Networking Project is comprised of patient volunteers who are the CFS section leaders from each of the major computer networks. The Project:
The Project can be contacted on Internet via e-mail at cfs-me@sjuvm.stjohns.edu and by Fido netmail at CFS-ME at 1:163/221. The Project's current members are: Roger Burns (Internet/Usenet, cfs-news-request@maelstrom.stjohns.edu); Lucie Dorais (GEnie, l.dorais@genie.geis.com); Maryka Ford (Prodigy, ANSU44B@Prodigy.com); Molly Holzschlag (Project founder, molly@azstarnet.com); Sandy Shaw (Fidonet, shaws@hookup.net); and Marc Fluks (Netherlands, fluks@astro.uva.nl). (See the Project's postal addresses below.)
- - produces & distributes the CFS/M.E. Electronic Resources guide
- - operates the CFS Newswire service
- - writes articles about how to access computer networks
- - offers help in finding CFS/M.E. resources on the nets
The "CFS/M.E. Electronic Resources" pamphlet is a comprehensive guide written by the Project advises on where to find the CFS discussion groups and information files available on all of the various BBSs, Free-Nets, and the major commercial networks. It is available via web. By e-mail, send the command GET CFS-NET TXT to address LISTSERV@MAELSTROM.STJOHNS.EDU. The guide is posted regularly to the newsgroup alt.med.cfs with the subject "FAQ: CFS Electronic Resources". It can be downloaded from the Project ENABLE BBS in West Virginia, tel. 1-304-759-0727, file area 23, filename CFS-NET.TXT.
For a printed copy, please send a stamped, self-addressed legal-sized envelope to the following address in the USA:
From outside of the USA or Canada, please send to either address and include an International Reply Coupon to cover return postage. Printing the guide does cost some money, and the Project asks that donations of any size be sent in so that this work may continue.
- CFS/M.E. Computer Networking Project
P.O. Box 11347
Washington, DC 20008-0547
- Canadians should send to:
- CFS/M.E. Computer Networking Project
3332 McCarthy Road
P.O. Box 37045
Ottawa, Ontario K1V 0W0
About Roger Burns
Roger Burns lives in Washington, D.C. where he publishes the CFS-NEWS Electronic Newsletter, moderates online CFS discussion groups (CFS-L and CFIDS-L) and develops web pages. He is a charter member of the CFS/M.E. Computer Networking Project. Before taking disability retirement due to CFS, Mr. Burns was a government economist at the U.S. Department of Labor, Bureau of Labor Statistics and was quite active as a local civic leader. He can be reached by e-mail at cfs-news-request@maelstrom.stjohns.edu.