Subject: FAQ: CFS alt.health.cfids-action/CFIDS-L Guidelines
Supersedes: <medicine/chronic-fatigue-syndrome/cfids-guidelines_828893990@rtfm.mit.edu>
Date: 15 Apr 1996 04:54:16 GMT
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: 1995/03/04

Posting-Frequency: weekly

   CFIDS-L / alt.health.cfids-action
 
Welcome to CFIDS-L / alt.health.cfids-action.  This discussion group is for
political action issues regarding CFS/CFIDS/ME.
 
Those who are looking a patients' discussion of health and other issues
should join the CFS-L list based at LISTSERV@LIST.NIH.GOV, or its mirror
newgroup alt.med.cfs, since none of those issues are discussed here.
 
Those who don't wish to follow this discussion regularly may at the least
find it beneficial to subscribe to this group's ALERT file which will be
updated from time to time.  (Yes, it's possible to subscribe to a FILE!)
See the description of how to do this below, under point (2).
 
                     ACCESS TO THE GROUP
 
This list is gatewayed to newsgroup alt.health.cfids-action.  Given the
technical moderation arrangement for this group, those who would like to be
able to post directly to the newsgroup can do so by registering at the 
Listserv which hosts the Internet half of this discussion.  Specifically, 
send the commands
 
   SUB CFIDS-L YourFirstName YourLastName
   SET CFIDS-L NOMAIL
 
as an e-mail message to the address LISTSERV@AMERICAN.EDU.
 
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).
 
Other lists of particular interest to readers of this discussion are
described at the end of this message.
 
                     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.
 
   Please note the following about CFIDS-L:
 
(1) Please comment on ideas and make positive suggestions.  Please do not
personally criticize other participants.  If you are personally
criticized, please do not respond directly on the list but instead bring
it to the attention of the list-owner privately (i.e., Roger Burns at
address CFIDS-L-REQUEST@AMERICAN.EDU).
 
(2) There are information files available for our use here at the AMERICAN
Listserv.  To get a description of them, send the command GET CFIDS-L README 
to the address LISTSERV@AMERICAN.EDU.  There are lists of names and
addresses to write to for lobbying, files that contain sample letters, and
"ISSUE" files that outline various current issues. 
 
              FURTHER INFORMATION / TECHNICAL ISSUES
 
It is recommended that everyone subscribe to the Automatic File
Distribution (AFD) service for the CFIDS-L ALERT file at this Listserv.
(You can sign up for AFD service for any public file on any Listserv).
This service send you a new file every time the file's contents may be
updated.  To sign up, send the command AFD ADD CFIDS-L ALERT to the
Listserv address.  You might wish to also sign up for CFIDS-L ISSUES.
Another option is the FUI service, i.e. File Update Information, which
merely sends a brief message saying that the file in question has been
revised (so you may choose to take the 2nd step of GETting the updated
file).  To do so, in this example, send FUI ADD CFIDS-L ALERT to Listserv.
 
If you do use either AFD or FUI it is advisable to set and use a Listserv
password for yourself, which will prevent hackers from signing you up to
several files that you don;t wish sent to you.  To set a password send
PW ADD <password> to Listserv (and WRITE DOWN your password!).
Thereafter, whenever using the AFD or FUI commands, add PW=<password> to
the end of the full command, e.g. AFD ADD CFIDS-L ALERT PW=PASSWORD .
 
(3) Weekly logs of this (CFIDS-L) list's previous messages can be
obtained by sending the command GET CFIDS-L LOG* (where * is a particular
week, e.g., LOG9404A is the log for 1992, April, 1st week) as the text of
a message to the Internet address LISTSERV@AMERICAN.EDU.  Sending the 
command INDEX CFIDS-L to the LISTSERV will get a listing of all the 
filenames available for retrieval.  Note that these message archives are 
temporary and that the Listserv policy is to delete them after about six 
months.
 
 
                  Other CFS-oriented lists of interest
 
To participate in a list you must know the list-name and the nodename of
the 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 which sponsors the list.  However, to post messages to the list 
on a
day-to-day basis for all to see, you must send your message to the
LIST-NAME address.
 
General example:
 
   To subscribe, send the command
 
   SUB <listname> YourFirstName YourLastName
 
   to the address LISTSERV@<nodename>
   but post messages for the list to <listname>@<nodename>
 
Specific example: for <listname> = CFS-L and <nodename> = LIST.NIH.GOV
                  and user name = Sally Forth
 
   To subscribe, send the command
 
   SUB CFS-L Sally Forth
 
   to the address LISTSERV@LIST.NIH.GOV
   but post message to the address CFS-L@LIST.NIH.GOV
 
 
 ==================
 = SPECIFIC LISTS =
 ==================
 
(1) listname: CFS-NEWS
    nodename: LIST.NIH.GOV (or on BITNET, NIHLIST)
 
The CFS-NEWS Electronic Newsletter is issued between 1 and 4 times each
month and focuses on medical issues.  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.  Back issues can
be obtained by sending the commands INDEX CFS-NEWS and GET CFS-NEWS LOG*
to the LISTSERV address.  The * in LOG* is a numerical representation of
the year and month, e.g. to get the 1992 August log you should send the
command GET CFS-NEWS LOG9208 to the Listserv address.
 
(2) listname: CFS-L
    nodename: LIST.NIH.GOV (or on BITNET, NIHLIST)
 
Patient discussion of health and other issues.  Same as newsgroup 
alt.med.cfs.
 
 
(3) listname: CFS-WIRE
    nodename: SJUVM.STJOHNS.EDU (or on BITNET, SJUVM)
 
News article exchange for editors of patient organization newsletters.
Subscription open to all.
 
 
(4) listname: CFS-MED
    nodename: LIST.NIH.GOV (or on BITNET, NIHLIST)
 
Physician discussion of CFS.
 
 
(5) listname: CFIDS-L
    nodename: AMERICAN.EDU
 
Political action discussion for CFS/CFIDS/M.E.
 
 
(7) listname: CATHAR-M
    nodename: SJUVM.STJOHNS.EDU (or on BITNET, SJUVM)
 
Monthly magazine of personal health, intellect and creativity for the
CFS/CFIDS/ME community.
 
 
(8) listname: CFS-FILE
    nodename: SJUVM.STJOHNS.EDU (or on BITNET, SJUVM)
 
File database containg many medical articles, newsletters, etc.  Send the
command GET CFS-FILE FILELIST to see all available filenames, then send
GET <filename1> <filename2> to retrieve a specific file.
 
 
(9) listname: CFS-D
    nodename: LISTSERV%ALBNYDH2@ALBANY.EDU (or on BITNET, ALBNYDH2)
 
Similar to CFS-FILE described above.  Contains some older articles, and
special files used by the CFS-L discussion group.
 
 
Roger Burns   CFIDS-L-REQUEST@AMERICAN.EDU / fidonet 1:109/432
Moderator, CFIDS-L / alt.health.cfids-action discussion
 
================ From: CFIDS-L@LISTSERV.AMERICAN.EDU ================









