Path: senator-bedfellow.mit.edu!faqserv
From: cfs-news@cais.cais.com (Roger Burns)
Newsgroups: alt.health.cfids-action,alt.answers,news.answers
Subject: FAQ: CFS alt.health.cfids-action/CFIDS-L Guidelines
Supersedes: <medicine/chronic-fatigue-syndrome/cfids-guidelines_888928386@rtfm.mit.edu>
Followup-To: alt.health.cfids-action
Date: 10 Mar 1998 13:06:08 GMT
Organization: none
Lines: 290
Approved: news-answers-request@MIT.EDU
Expires: 31 Mar 1998 13:05:39 GMT
Message-ID: <medicine/chronic-fatigue-syndrome/cfids-guidelines_889535139@rtfm.mit.edu>
Reply-To: CFIDS-L-REQUEST@AMERICAN.EDU
NNTP-Posting-Host: penguin-lust.mit.edu
Summary: This posting contains information and discussion guidelines for
        the participants of alt.health.cfids-action, the political action
        discussion group for those who are ill with CFS/CFIDS/M.E. (chronic 
        fatigue syndrome).
X-Last-Updated: 1997/05/10
Originator: faqserv@penguin-lust.MIT.EDU
Xref: senator-bedfellow.mit.edu alt.health.cfids-action:2361 alt.answers:32688 news.answers:125172

Archive-name: medicine/chronic-fatigue-syndrome/cfids-guidelines
Posting-Frequency: weekly
Last-modified: 1997/05/10

                     CFIDS-L / alt.health.cfids-action

                            Rules and Guidelines

Welcome to CFIDS-L / alt.health.cfids-action! This discussion group is for
political action issues regarding CFS/CFIDS/ME.

Vists our web page at http://www.cais.net/cfs-news/action.htm for the
latest information and current projects! Or to get instructions about how
to obtain the group's information files via email, send the command

       GET CFIDS ACTION

in an email message to the address LISTSERV@MAELSTROM.STJOHNS.EDU.

Those who are looking a 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 none of those issues are discussed
here. To unsubscribe from CFIDS-L, send the command UNSUB CFIDS-L to the
address LISTSERV@AMERICAN.EDU.

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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 

                     CFIDS-L-REQUEST@AMERICAN.EDU 

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@AMERICAN.EDU . 

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@AMERICAN.EDU *after* you have received confirmation of
your registration. 

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About CFIDS

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.cais.net/cfs-news/

Other lists of particular interest to readers of this discussion are
described at the end of this message.

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Group rules

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.

And we have an indefinite ban in place on discussing the old WECAN-related
controversies which had caused much disruption within this group in
September 1996.

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

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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.

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Other CFS-oriented lists of interest

To participate in a list you must know the list's name, and the address of
the specific LISTSERV where the list is based. Please note in general that
to subscribe to a list, you must send commands by e-mail to the LISTSERV
address (the automated mailing list manager). However, to post messages to
the list for the readers to see, you must send your message to the listname
address.

General example:

   To subscribe, send the command

      SUB (listname) YourFirstName YourLastName

   to the particular LISTSERV where the list is based;

   but to post messages for the whole group to read, send to the
   list's address.

Specific example:

   To join the list CFS-L which is based at LISTSERV@MAELSTROM.STJOHNS.EDU,
   Ms. Sally Forth would subscribe by sending the command

      SUB CFS-L Sally Forth

   to the address LISTSERV@MAELSTROM.STJOHNS.EDU, but to post messages for
   the whole group to read, she would send to the address
   CFS-L@MAELSTROM.STJOHNS.EDU.

For a more extensive discussion about mailing lists and LISTSERV, see the
CFS Network Help file. To obtain it, send the command GET CFS NET-HELP as
an e-mail message to address LISTSERV@MAELSTROM.STJOHNS.EDU, or via web
browse to http://www.mcs.net/~dalton/net-help.htm#LISTS.

SPECIFIC LISTS

(1) Listname: CFS-NEWS
Title: CFS-NEWS Electronic Newsletter
Subscription address: LISTSERV@MAELSTROM.STJOHNS.EDU
Web page: http://www.cais.net/cfs-news/cfs-news.htm

The CFS-NEWS Electronic Newsletter is issued between 1 and 4 times each
month and focuses on medical issues about chronic fatigue syndrome.
CFS-NEWS publishes timely reports on current research, medical conferences
and medical publications. The newsletter is also available through the
Fidonet CFS echo, available on many BBSs, and is transmitted through the
Usenet newsgroup bit.listserv.cfs.newsletter. For instructions on obtaining
back issues, send the command GET CFS-NEWS INDEX to the address
LISTSERV@MAELSTROM.STJOHNS.EDU.

(2) Listname: CFS-L (linked to the alt.med.cfs newsgroup)
Title: CFS Patients discussion group
Subscription address: LISTSERV@MAELSTROM.STJOHNS.EDU
Web page: http://www.cais.net/cfs-news/cfs-l.htm

This is a wide-ranging patients' discussion group on CFS which deals with
medical treatments, disability benefits, coping and other issues. The group
can be accessed either through Internet e-mail OR through Usenet as
newsgroup alt.med.cfs. For direct posting privileges to the newsgroup,
register by sending the command:
SUB CFS-L YourFirstName YourLastName
to the address LISTSERV@MAELSTROM.STJOHNS.EDU. Read the newsgroup's Topics
FAQ for the rules of participation.

(3) Listname: CFS-WIRE
Title: CFS Newswire service
Subscription address: LISTSERV@MAELSTROM.STJOHNS.EDU

This mailing list is an exchange of news articles among editors of
newsletters for CFS patient groups. Some articles are posted by other
organizations, and by individuals. Timely articles appear irregulalry,
perhaps several times a month through this mailing list. Subscription is
open to all.

(4) Listname: CFS-DOC
Title: CFS discussion for doctors
Subscription address: CFS-DOC-REQUEST@MAELSTROM.STJOHNS.EDU
Web page: http://www.cais.net/cfs-news/doctors.htm

This is a private discussion group about CFS. Only medical doctors and
doctors of osteopathy may participate. To apply to join, send a request to
address CFS-DOC-REQUEST@MAELSTROM.STJOHNS.EDU.

(5) Listname: CFS-MED
Title: CFS discussion for health professionals
Subscription address: LISTSERV@MAELSTROM.STJOHNS.EDU

This is a discussion group for health professionals. The group is not
operative yet, and the rules about exactly who may participate have not
been developed. Temporary subscriptions are available now until the group
will become operative.

(6) Listname: CFIDS-L (linked to the alt.health.cfids-action newsgroup)
Title: Political advocacy issues for CFS/CFIDS/ME
Subscription address: LISTSERV@AMERICAN.EDU
Web page: http://www.cais.net/cfs-news/action.htm

Political action discussion for CFS/CFIDS/ME. The group can be accessed
either through Internet e-mail OR through Usenet as newsgroup
alt.health.cfids-action. For direct posting privileges to the newsgroup,
register by sending the commands:
SUB CFIDS-L YourFistName YourLastName
SET CFIDS-L NOMAIL
as an e-mail message to LISTSERV@AMERICAN.EDU.

(7) Listname: CFS-Y
Title: CFS Youth Discussion group
Subscription address: LISTSERV@MAELSTROM.STJOHNS.EDU

This group is for young people who have CFS/CFIDS/ME. To join, send 
the command:
SUB CFS-Y YourFirstName YourLastName
to the address LISTSERV@MAELSTROM.STJOHNS.EDU.

(8) Listname: CFS-OPEN
Title: Unmoderated CFS Discussion group
Subscription address: LISTSERV@MAELSTROM.STJOHNS.EDU

This is an unmoderated CFS patients' discussion group. May contain heated
debate. The group can be accessed either through Internet e-mail OR through
Usenet as newsgroup alt.med.cfs.open. For direct posting privileges to the
newsgroup, register by sending the command:
SUB CFS-OPEN YourFirstName YourLastName
to the address LISTSERV@MAELSTROM.STJOHNS.EDU.

(9) Listname: CATHAR-M
Title: Catharsis Magazine
Subscription address: LISTSERV@MAELSTROM.STJOHNS.EDU

This is a monthly humanities magazine of personal health, intellect and
creativity for the CFS/CFIDS/ME community. The magazine has been
temporarily suspended until a new editor has been found.

(10) Listname: CFS-FILE
Title: CFS-FILE database of information files
Subscription address: LISTSERV@MAELSTROM.STJOHNS.EDU

This is a file database containing many medical articles, newsletters, etc.
about or relating to CFS. To get a list of current files available, send
the command GET CFS-FILE FILELIST to LISTSERV@MAELSTROM.STJOHNS.EDU. To
retrieve specific files, note the filenames on the FILELIST and then send a
command in the form of GET (filename1) (filename2) to the LISTSERV address
(each file has a two-part name). Example: GET CFS FAQ

For a more detailed discussion of the CFS-FILE fileserver, see the CFS
Network Help file (to obtain a copy, send the command GET CFS NET-HELP as
e-mail to LISTSERV@MAELSTROM.STJOHNS.EDU).

(11) Listname: CFS-D
Title: CFS-D file database
Subscription address: LISTSERV@HEALTH.STATE.NY.US

This file database is similar to the CFS-FILE fileserver described above,
however it has fewer files. CFS-D contains individual back-issues of
CFS-NEWS, some older articles, and special files used by the CFS Patients
Discussion Group.

To get a listing of all available files, send the command GET CFS-D
FILELIST as e-mail to the address LISTSERV@HEALTH.STATE.NY.US. To retrieve
specific files, note the filenames on the FILELIST and then send a command
in the form of GET (filename1) (filename2) to the LISTSERV address (each
file has a two-part name). Example: GET CFS-NEWS 045

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Other CFS information documents

A few of these are stored at several LISTSERV sites, but all of them can be
obtained by sending a command in the form of GET filename1 filename2 to the
address LISTSERV@MAELSTROM.STJOHNS.EDU. e.g. GET CFS FAQ

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

=========== From: CFIDS-L@LISTSERV.AMERICAN.EDU ===========

--------- end of document -------------------------------------

