FAQ: CFS alt.health.cfids-action/CFIDS-L Guidelines

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Roger Burns

Oct 27, 2005, 12:28:50 AM10/27/05
Archive-name: medicine/chronic-fatigue-syndrome/cfids-guidelines
Posting-Frequency: weekly
Last-modified: 1999/11/14

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.cfs-news.org/action.htm for
information about current projects.

Those who are looking a patients' discussion of health and other
issues should join the CFS-L medical/support group, since none of
those issues are discussed here. To find out about that group, see
the web page at http://www.cfs-news.org/cfs-l.htm or contact the
group's volunteer managers by e-mail at

This group, CFIDS-L, focuses on CFS/CFIDS/ME activism. CFIDS-L is not
a support group. To unsubscribe from CFIDS-L, send an e-mail message
which says UNSUB CFIDS-L to the address
LIST...@MAELSTROM.STJOHNS.EDU, or ask for assistance by writing to
CFIDS-L...@MAELSTROM.STJOHNS.EDU where a human being will


Access to the group

The Action for CFIDS / M.E. group is mostly an e-mail list. Messages
posted our speical NET: topic are seen through our companion
newsgroup alt.health.cfids-action.



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, see 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.


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

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

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

A special directive is in place for the indefinite time being which
bans the following:

-- all criticisms having to do with PAST actions or communications
prior to May 20, 1999 by (1) the CAA (the CFIDS Association of
America), (2) NCF (National CFIDS Foundation), (3) RESCIND, AND
(4) any of those organizations' individual board members,
officers or staff, including but not limited to: Kim Kenney, Marc
Iverson, Vicki Walker, Ed isenberg, Patti Schmidt, Tom Hennessy,
Gail Kansky, and anyone else working on behalf of CAA, NCF or

-- more specifically, comments to be banned will be those like:
"Organization X" or "individual Y" are liars, or are working
against the interest of patients, etc. Any disparaging comments
about the groups, and their related individuals, listed above
are be banned.

-- only criticisms of actions / statements prior to May 20, 1999
are banned. Anything that happens after then is open for
discussions and criticism. However, no reference can be made
to past characterizations. For example, the following would not
be allowed: "Their new announcement made today is false, SO THEY
the X Group undermines the interests of the patients, ONCE

There must be no open discussion of this directive while it is in
effect (which will be indefinitely). Any comments about this
directive must be sent to the moderators privately at

The moderators may from time to time, at their discretion,
announce an action that they have taken regarding an individual case
of a rule violation, and they may explain why they have taken that
action. However, such announcements will contain a notice stating
that no one may discuss or ask questions about these specific cases
in public in the group, and that those who do may have their posting
privileges suspended.

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

Posted messages remain within the e-mail group unless the keyword
NET: appears in the Subject: line of the message. The NET: messages
appear both in the e-mail group and in the newsgroup
alt.health.cfids-action, and so will be archived in many public
search engines.


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

(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.


Other CFS-oriented discussion groups and mailing lists

Below are listed a few of the more popular discussion groups and
mailing lists about CFS. There are dozens of CFS groups, and to view
a more complete catalog of them see the web page at
http://members.aol.com/cfslists/lists.htm .

About mailing lists

To join a mailing list you can request assistance from the group's
manager(s) OR you can self-subscribe. Each of the descriptions shown
below contains an e-mail address for the groups' managers, and the
procedure to self-subscribe.

To self-subscribe 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 a discussion group for the readers to
see, you must send your message to the listname address.

General example:

To subscribe, send a message in the form of

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
LIST...@MAELSTROM.STJOHNS.EDU, Ms. Sally Forth would subscribe by
sending an e-mail message which says

SUB CFS-L Sally Forth

to the address LIST...@MAELSTROM.STJOHNS.EDU. After she has
joined, she can post messages for the whole group to read by
sending to address CF...@MAELSTROM.STJOHNS.EDU .

For a more extensive discussion about mailing lists and LISTSERV, see
the CFS Network Help file. To obtain it, send an e-mail message which
see the web page at
http://members.aol.com/cfslists/net-help.htm#LISTS .



(1) Listname: CFS-NEWS

Title: CFS-NEWS Electronic Newsletter
Subscription address: LIST...@MAELSTROM.STJOHNS.EDU
Web page: http://www.cfs-news.org/cfs-news.htm

The CFS-NEWS Electronic Newsletter focuses on medical issues about
chronic fatigue syndrome. It is published between 1 and 4 times each
month. It has an estimated readership of over 10,000 in some 50

To self-subscribe, send an e-mail message in the form of

SUB CFS-NEWS YourFirstName YourLastName

to the address LIST...@MAELSTROM.STJOHNS.EDU. Or ask to be added by
writing to CFS-NEWS...@MAELSTROM.STJOHNS.EDU . The newsletter's
web page is at http://www.cfs-news.org/cfs-news.htm .


(2) Listname: CFS-L (linked to the alt.med.cfs newsgroup)

Title: CFS Patients discussion group
Subscription address: LIST...@MAELSTROM.STJOHNS.EDU
To get assistance: CFS-L-...@MAELSTROM.STJOHNS.EDU
Web page: http://www.cfs-news.org/cfs-l.htm

This is the most active CFS discussion group on the Internet. Topics
include medical treatments, disability benefits, coping and other
issues. The group can be accessed through Internet e-mail, through
the Usenet newsgroup alt.med.cfs, or through a web interface. For
direct posting privileges to the group, register by sending an e-mail
message in the form of

SUB CFS-L YourFirstName YourLastName

to the address LIST...@MAELSTROM.STJOHNS.EDU. Read the newsgroup's
Topics FAQ for the rules of participation. To get assistance, write


(3) Listname: CO-CURE

Title: CFS/FM information exchange
Subscription address: LIST...@LISTSERV.NODAK.EDU
To get assistance: CO-CURE...@LISTSERV.NODAK.EDU
Web page: http://www.co-cure.org

This is an announcements list (not a discussion group) where news
about CFS and FM are exchanged. To join the CO-CURE mailing list,
send an e-mail message in the form of

SUBSCRIBE CO-CURE (FirstName) (LastName)

to the address LIST...@LISTSERV.NODAK.EDU .


(4) Listname: FIBROM-L

Title: Fibromyalgia / Fibrositis discussion
Subscription address: LIST...@MITVMA.MIT.EDU
To get assistance: FIBROM-L...@MITVMA.MIT.EDU

This is an active discussion group for patients and doctors about
Fibromyalgia. The group makes some help files available. To get on
the FIBROM-L mailing list, send an e-mail message in the form of

SUB FIBROM-L YourFirstName YourLastName

to the address LIST...@MITVMA.MIT.EDU .

There is also a separate Usenet newsgroup alt.med.fibromyalgia .
To find Fibromyalgia resources on the web, see
http://www.cfs-news.org/fibro.htm .


(5) Group: LIVE CHAT (IRC)

CFS patients participate daily in live chat sessions via Internet
Relay Chat (I.R.C.). This is mostly a social outlet, and is often a
lot of fun! See the web page at



(6) Listname: CFS-DOC

Title: CFS discussion for doctors
Subscription address: CFS-DOC...@MAELSTROM.STJOHNS.EDU
Web page: http://www.cfs-news.org/cfs-doc.htm

This is a private discussion group about CFS. Only medical doctors
and doctors of osteopathy may participate. To apply to join, see the
web page at http://www.cfs-news.org/cfs-doc.htm or write to address

Also see the Doctors CFS Web page at
http://www.cais.net/cfs-news/doctors.htm .


(7) Listname: CFIDS-L (linked to the alt.health.cfids-action

Title: Activism for CFS/CFIDS/ME
Subscription address: LIST...@MAELSTROM.STJOHNS.EDU
Web page: http://www.cfs-news.org/cfids-l.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.

SUB CFIDS-L YourFistName YourLastName

as an e-mail message to LIST...@MAELSTROM.STJOHNS.EDU.

Also see the Action web page at http://www.cfs-news.org/action.htm.


(8) Listnames: CFS-Y and CFS-20S

There are two groups for young people: CFS-Y for youths under 25, and
CFS-20S for adults in their 20s.

- - - - - - - - - - - - - - - - -

Listname: CFS-Y
Title: CFS Youth Discussion group
Subscription address: LIST...@MAELSTROM.STJOHNS.EDU
To get assistance: CFS-Y-...@MAELSTROM.STJOHNS.EDU

This group is for young people under 25 who have CFS/CFIDS/ME. To
join, send an e-mail message in the form of:

SUB CFS-Y YourFirstName YourLastName


See also the Youth and Pediatrics CFS web page at
http://www.cfs-news.org/youth.htm .

- - - - - - - - - - - - - - - - -

Listname: CFS-20S
Title: 20-somethings CFS discussion
Subscription address: LIST...@MAELSTROM.STJOHNS.EDU
To get assistance: CFS-20S...@MAELSTROM.STJOHNS.EDU
Web page: http://members.wbs.net/homepages/c/f/i/cfids/cfs20s.html

CFS-20s is for 20-somethings with CFIDS/CFS/ME, their spouses or
significant others, and those with CFS related conditions. To
subscribe, send an e-mail message in the form of

subscribe CFS-20s (YourFirstName) (YourLastName)



(9) Listname: CFS-CARE

Title: Caregivers discussion
Subscription address: CFS-CARE...@MAELSTROM.STJOHNS.EDU

Caregivers of PWC's discussion. Please note that the discussion group
is limited to caregivers of PWC's. To subscribe send a request to


(10) Listname: CFS-OPEN

Title: Unmoderated CFS Discussion group
Subscription address: LIST...@MAELSTROM.STJOHNS.EDU

This is an unmoderated CFS patients' discussion group. Heated
discussions that are too argumentative to be held elsewhere may be
held here. Postings of long documents are also allowed.


CFS information documents

The following web pages are quite useful:

Main CFS/M.E. info page http://www.cfs-news.org
Frequently Asked Questions http://www.cfs-news.org/faq.htm
Quick Index http://www.cfs-news.org/quick.htm

All of the following documents can be obtained by sending an e-mail
message in the form of

GET filename1 filename2

For example: 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

=========== From: CFI...@MAELSTROM.STJOHNS.EDU ===========

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

Roger Burns

Nov 3, 2005, 12:30:15 AM11/3/05
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