Discussion group:
Action for CFIDS / M.E.

Updated: Oct. 16, 1999

Welcome to the Action for CFIDS / M.E. group! This is a discussion group for for political action issues regarding CFS/CFIDS/ME . This page you are reading describes how to partipicate in the group and what the rules are. Be sure to visit our

Action for CFIDS / M.E. Web Page


to see our current projects and helpful advocacy information.

Those who are looking for a CFS patients' discussion of health and other issues should join the CFS-L list based at LISTSERV@MAELSTROM.STJOHNS.EDU, or its mirror newsgroup alt.med.cfs, since those issues are discussed here.

Back to the Top

Access to the group

The Action for CFIDS / M.E. group is both an e-mail list and a newsgroup. To post messages directly to the group, your e-mail address must be registered. (This prevents net-wide advertisements from appearing in the group). To get registered, send a request by e-mail to


Or you can self-register by creating an e-mail message which says

SUB CFIDS-L YourFirstName YourLastName

(but use your own name) and send to LISTSERV@MAELSTROM.STJOHNS.EDU . If you send from a web page such as this one, you will need to reply to a confirmation message which will be sent to you by e-mail before your registration will be complete.

If you will be posting to the newsgroup side our group at alt.health.cfids-action then you will want to have the e-mail option turned off of your registration. To do so, send SET CFIDS-L NOMAIL as an e-mail message to LISTSERV@MAELSTROM.STJOHNS.EDU . (This can be included in the same message as your SUB CFIDS-L command, unless you are sending from a web page in which case you will have to send it separately *after* you have received confirmation of your registration.)

Back to the Top

Rules for the group

1. Posts must be on topic - i.e. about CFIDS/CFS/M.E. activism.

2. There are to be no "flames", i.e. no personal attacks on a fellow participant.

3. No advertising.

4. Reports of rule violations must be sent privately to the moderators, i.e. no discussion of specific rule violations on the list.

5. Discussion of the group's rules shall take place only under the ADMIN: topic.

Permanent rules are made by the senior moderator (Roger Burns) only by fully consulting with the whole group first.

Guidelines for discussion

(A) Our actions will be greatly strengthened if we act in unison; let's try to create a consensus to take advantage of our strength of numbers.

(B) However, it's wise to recognize that individuals don't readily form a consensus. So let's respect each others opinions and recognize that in many cases we will need to "agree to disagree".

(C) At the least, let's try to make sure that we don't recommend plans of action whose timing conflicts with each other. For example, if there's an announced program by some advocates to encourage PWCs to press for research funding in September and you wish to launch a campaign about disability benefits, it may be better for you to pick a different target month for your campaign so that both efforts will be maximized.

Back to the Top

CFS-related Resources

CFIDS, or CFS, is an illness characterized by debilitating fatigue and a variety of flu-like symptoms. The condition is known as chronic fatigue syndrome (CFS), chronic fatigue immune deficiency syndrome (CFIDS), myalgic encephalomyelitis (ME) and by other names, and in the past has been known as chronic Epstein-Barr virus (CEBV). For a wealth of CFS related information, go to the web page at http://www.cfs-news.org/

CFS Information documents

CFS INDEX     A complete list of basic CFS documents on-line.
CFS FAQ       Answers to frequently asked questions about CFS.
CFS NET-HELP  Detailed info about CFS resources on Internet and LISTSERV.
CFS-NET TXT    About CFS on-line resources on all computer networks.

Back to the Top

Also note these other important CFS information resources:

[CFS / M.E. Information page]    [CFS Frequently Asked Questions]    [CFS Quick Index]

This page is maintained by the Moderators of the Action for CFIDS / M.E. discussion group
E-mail: cfids-l-request@maelstrom.stjohns.edu