
<medicine/chronic-fatigue-syndrome/cfids-
guidelines_793568415@rtfm.mit.edu>
<medicine/chronic-fatigue-syndrome/cfids-
guidelines_794409554@rtfm.mit.edu>
action
 discussion group for those who are ill with CFS/CFIDS/M.E. 
(chronic 
 fatigue syndrome).


Archive-name: medicine/chronic-fatigue-syndrome/cfids-guidelines

 
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
 
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
 
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 
 
 
(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
 










 

beacon.mit.edu
<medicine/chronic-fatigue-syndrome/cfs-network-
help_794409554@rtfm.mit.edu>
resources
 about chronic fatigue syndrome which are available via 
Internet,
 Usenet and Listserv.


Archive-name: medicine/chronic-fatigue-syndrome/cfs-network-help

 CFS NET-HELP file February 18, 1995
 compiled by Roger Burns <CFS-NEWS@LIST.NIH.GOV>


 ==================
 = Introduction =
 ==================

This file was written for CFS networkers to be a help reference
about LISTSERV and Internet. For the most basic help about LISTSERV,
it may only be necessary to read the first section. The sections
below are as follows:

 - A. Common LISTSERV commands
 - B. Lists of interest, and nodename aliases
 - C. SEARCHing and selecting old messages
 - D. USENET newsgroups
 - E. CFS information on file: the Albany & SJUVM File Servers
 - F. Further information about health resources and LISTSERV
 - G. Full service Internet facilities: gopher, ftp, telnet and www

For a fuller presentation of CFS-oriented electronic resources, get
and read the CFS Resource File "CFS-RES TXT" available from the file
servers as described below.


 =================================
 = A. Common LISTSERV commands =
 =================================

LISTSERV is an automated procedure that does administrative work to
maintain lists. It relieves the list-owner from a great many time-
consuming chores. Messages to be posted to a list for all to read
should be sent directly to the list address, e.g., CFS-L@LIST.NIH.GOV
however, requests for administrative changes to your list
subscription, or to retrieve files of archived messages, etc., must
be sent to the LISTSERV address (which in this example would be
LISTSERV@LIST.NIH.GOV) in the form of commands that LISTSERV
understands. Sometimes people will accidentally send a LISTSERV
command to a list address where it is distributed to all subscribers;
the person will then often get complaints from subscribers about how
too many accidental and unnecessary messages are clogging up the
network. So, address your mail to LISTSERV carefully!

Messages that are replies *and* which quote an earlier message including
the original mail headers will usually be rejected by Listserv if they
posting to. To ensure that your message gets posted, be sure to delete

In this guide, commands that LISTSERV will accept are initially shown
with the minimum acceptable abbreviation in capital letters.

 _____________________________________________
 ** LIST commands: SUBscribe, QUERY or SET options

To subscribe to a list, e-mail a command in the following format to
LISTSERV:

 SUBscribe <listname> <your_first_name> <your_first_name>

 Example: SUB CFS-L John Doze

You may later unsubscribe by sending the command: UNSUB <listname>
The QUERY and SET commands are useful for viewing and setting your
list options. Send QUERY <listname> to see whether your options have
been set for REPRO (will send you copies of messages you post, so you
are certain that they've been distributed to the list), NOMAIL (to
temporarily suspend list mail to you -- handy if you'll be out of
town and don't want list messages piling up at your address), DIGests
(to have all messages sent to you once per day/week/month, depending
on how the list is set up, so that you won't get every message
individually), INDex (to get a list of messages sent once per
day/week/month but not the actual messages themselves; messages of
interest can be retrieved using the GET command described below to
retrieve a message log, or by using the special techniques described
in Section C below), MAIL (to cancel a NOMAIL, DIGESTS or INDEX
setting), CONCEAL (to insure that your name on the subscription list
is not viewable by the public -- see the REView command described
below), SHORT (to make message mail-headers briefer -- less
extraneous information to page through), and others. To change
settings for your subscription, use the command SET <listname>
<option>:

 SET <listname> REPro or NOREPro
 NOMail or DIGests or INDex or Mail
 SHORT or FULL [and other alternatives]
 CONCEAL or NOCONCEAL
 [there are additional options; see help files
 LISTSERV REFCARD and LISTSERV MEMO described
 below in the section on "Files with more
 information"]

 ___________________________________________________________
 ** FILE commands

The REView, INDex and GET commands enable you to retrieve useful
information about a list, or about topics related to the list's
subject matter. Also, the AFD and FUI commands can help keep you
updated about important files that are revised from time to time
(these commands are described in Section D below).

The command REView <listname> will retrieve descriptive information
about a list, including its definition, the identity and address of
the list-owner, and a list of current subscribers.

The command INDex <listname> will show all files on the LISTSERV
relating to the named list. Usually these will only be archives of
the list's old messages. Sometimes the list-owner will have other
files of interest there. A few lists do not save previous messages.

The command GET <filename1> <filename2> will retrieve files saved on
the LISTSERV. Every file has a two-word name. Most often, files of
a list's archived messages will be grouped by month and will have
filenames in the form of <listname> LOG<2-digit-year><2-digit-month>.
For example, the January 1993 archive for CFS-L would have the
file-name CFS-L LOG9301 . Some lists, however, are grouped by week
or by message; some may not have standard filenames in any case. To
be certain, you can use the INDEX command described above to see what
the bona fide filenames are.

CFS information files are available from the St. John's Listserv at
LISTSERV@SJUVM.STJOHNS.EDU and from the Albany Listserv at
LISTSERV@ALBNYDH2.BITNET . For a discussion of those files and some
advanced LISTSERV file commands, see section "D." below.

 ___________________________________________________________
 ** Other helpful commands

The command Lists will show a description of all lists based at that
LISTSERV. The command Lists Global will generate a listing of all
LISTSERV lists everywhere! Be careful -- the file is over 3500 lines
long! To get only a selection of listnames where the name or
description contains the characters "xyz", send the command Lists
Global /xyz .

The command SHOW ALIAS <BITNET nodename> will show the Internet
alternative name for a nodename on BITNET. This may be useful if you
need an alternative means to reach a LISTSERV address. See the
section below on "BITNET and Internet nodename aliases".

The command THANKs will generate a message which says "YOU're
welcome!". This may be used to check whether all the network
connections are in place between you and the LISTSERV and to be sure
that the LISTSERV is up and operating.


 ===============================================
 = B. Lists of interest, and nodename aliases =
 ===============================================

Note the following network lists that may be of interest. In each
case, the Internet node where the sponsoring Listserv is located is
shown, and underneath in parentheses the BITNET nodename is shown.
(Always send subscription commands to the LISTSERV address. Study
Section A above carefully before using the addresses below.)

 CFS-L @ LIST.NIH.GOV Chronic Fatigue Syndrome general 
discussion.
 CFS-NEWS @ LIST.NIH.GOV CFS Electronic Newsletter.
 (NIHLIST) Gatewayed to 
bit.listserv.cfs.newsletter.
 CATHAR-M @ SJUVM.STJOHNS.EDU Catharsis magazine of personal health,
 (SJUVM) intellect and creativity for the CFS 
community
 CFS-WIRE @ SJUVM.STJOHNS.EDU CFS Newswire service to exchange news 
articles
 (SJUVM) between CFS support group newsletters
 CFIDS-L @ AMERICAN.EDU CFS/CFIDS/ME political action 
discussion.
 CFS-FILE @ SJUVM.STJOHNS.EDU Notices of additions and changes to CFS 
file
 (SJUVM) base at SJUVM
 CFS-D%ALBNYDH2@ALBANY.EDU Notices of additions and changes to CFS 
file
 (ALBNYDH2) base at ALBNYDH2 (the Internet address 
of the
 Listserv is 
Listserv%albnydh2@albany.edu)
 CFS-MED @ LIST.NIH.GOV Chronic Fatigue Syndrome medical 
discussion
 (NIHLIST)
 immune (not on LISTSERV) Immune system discussion. To subscribe, 
send
 a message to immune-
request@weber.ucsd.edu.
 To post messages send to 
immune@weber.ucsd.edu
 FIBROM-L @ VMD.CSO.UIUC.EDU Fibromyalgia / Fibrositis discussion
 Gulf War Syndrome News on Gulf War syndrome. To join, 
send a
 request to GWVM@delphi.com.
 Toxicology Update Newsletter of interest to those with 
multiple
 chemical sensitivities (a.k.a. 
environmental
 illness). To subscribe send the command
 SUBSCRIBE TOXUPS YourFirstName 
YourLastName
 to samcfadd@access.digex.net.
 WITSENDO @ DARTCMS1.DARTMOUTH.EDU Endometriosis discussion
 (DARTCMS1)
 EPD @ white.cis.pitt.edu Enzyme Potentiated Desensitization 
treatment
 discussion. (Send SUBSCRIBE in the 
 line to epd@white.cis.pitt.edu.)
 LymeNet-L Lyme Disease electronic newsletter 
available
 through a non-standard listserv; send 
the
 command Subscribe Lymenet-l <your> 
<name>
 to listserv@lehigh.edu
 YEAST-L @ PSUHMC.HMC.PSU.EDU Yeast problems and yeast-free recipes.
 (PSUHMC)
 PNI @ ccat.sas.upenn.edu PNI professional discussion (psychoneuro-
 immunology; send SUBSCRIBE PNI to
 LSTSRV@ccat.sas.upenn.edu)
 HOLISTIC @ SIUCVMB.SIU.EDU Holistic discussion
 (SIUCVMB)
 HERB @ VM3090.EGE.EDU.TR Medicinal and Aromatic Plants discussion
 (TREARN)
 VEGLIFE @ VTVM1.CC.VT.EDU Vegetarian discussion
 (VTVM1)
 WMN-HLTH @ U.WASHINGTON.EDU Women's Health discussion
 AMALGAM @ VM.GMD.DE Dental AMALGAM and MERCURY Poisoning
 (DEARN)
 HELP-NET @ VM.TEMPLE.EDU Bitnet / Internet Help Resource
 (TEMPLEVM)

LISTSERV machines reside on BITNET nodes. They can be reached via
e-mail directly by other BITNET nodes. Other nodes that are on
Internet but not BITNET can send mail to a LISTSERV usually by simply
adding .BITNET to the end of the BITNET nodename. There will be some
Internet nodes, however, for which this may not work. In these cases
mail should be sent to the Internet alias for the BITNET node. (A
few BITNET nodes, however, have no Internet aliases.)

As described in the previous section on common LISTSERV commands, the
Internet alias for a BITNET node can be found by sending the command
SHOW ALIAS <Bitnet nodename> to any LISTSERV. Below are shown
aliases for some BITNET nodes. Since the BITNET node for SIUCVMB has
no Internet alias, the .BITNET suffix is shown in the list below.

 Bitnet Internet Bitnet Internet

 ALBNYDH2 ALBNYDH2.BITNET NIHLIST LIST.NIH.GOV
 AUVM AMERICAN.EDU SIUCVMB SIUCVMB.SIU.EDU
 BITNIC BITNIC.CREN.NET SJUVM SJUVM.STJOHNS.EDU
 DARTCMS1 DARTCMS1.DARTMOUTH.EDU TEMPLEVM VM.TEMPLE.EDU
 DEARN VM.GMD.DE TREARN VM3090.EGE.EDU.TR
 HEARN NIC.SURFNET.NL UBVM UBVM.CC.BUFFALO.EDU
 INDYCMS INDYCMS.IUPUI.EDU UIUCVMD VMD.CSO.UIUC.EDU
 IRLEARN IRLEARN.UCD.IE UKACRL IB.RL.AC.UK
 NDSUVM1 VM1.NODAK.EDU VTVM1 VTVM1.CC.VT.EDU


 =============================================
 = C. SEARCHing and selecting old messages =
 =============================================

You can have LISTSERV send you only selected messages of your
choosing without having to retrieve whole files of monthly logs. All
LISTSERV lists that have archived messages can have those messages
searched and selected by using database commands. These commands
must be submitted as a "batch job", however, not as the simpler
one-line commands described above. Consider the following example
where we want to search the CFS-L archive for all messages containing
the character string "amalgam":

// JOB Echo=No
Database Search DD=A
//A DD *
SEARCH AMALGAM IN CFS-L
INDEX
PRINT
/*

If you send the text above to the LISTSERV where CFS-L is based
(i.e., at nodename NIHLIST.BITNET or LIST.NIH.GOV) you will have sent
to you a listing of all CFS-L messages that contain the word
"amalgam" (regardless of whether any of the letters are upper or
lower case in the messages).

Please note that the NIH Listserv has a restriction on computing time
that may block most search jobs from being completed UNLESS they are
split into at least two separate jobs. A good way to do this is to
add, at the end of your SEARCH command, a separate time interval
restriction for each search job. For example, in your first job you
might add FROM 1 AUG 92 TO 30 JUN 93 at the end of the SEARCH command 
(so
that it might read SEARCH AMALGAM IN CFS-L FROM 1 AUG 92 TO 30 JUN 93 ),
and similarly in the second search job add SINCE 1 JUL 93 . This will
cover the entire archive, between the two separate jobs. In some cases
you may need to break the job up into 3 batches by, e.g., by adding
FROM 1 AUG 92 TO 30 OCT 93 to the first SEARCH command line,
FROM 1 NOV 93 TO 30 MAR 94 to the second SEARCH command line, and
SINCE 1 APR to the third.

The "INDEX" command as shown above is unnecessary but it's useful to
include it because sometimes a database search will exceed the
maximum allowable output per job (2000 lines); the INDEX output will
list all the items that had been found from the search, including
what wasn't printed out because of the maximum limit. You can get
those extra items by submitting another variation of the search
command. If you use the command SEARCH AMALGAM IN CFS-L SINCE 13 NOV
you will then be sent all messages that contain the word AMALGAM and
had been sent on or after the 13th of November.

You can also narrow your search by using the reserved word AND or
broaden it by using the reserved word OR. E.g., entering SEARCH
AMALGAM AND RESEARCH would yield only those messages which contained
both of those words.

A full description of how to use the LISTSERV database utility can be
obtained by sending the "regular" LISTSERV command (i.e., not placed
within a batch job) GET LISTDB MEMO to any LISTSERV. The one error
in the LISTDB MEMO manual is that it says you must send database
batch jobs to the address DATABASE@nodename whereas in fact you must
send them to LISTSERV@nodename.


 =========================
 = D. USENET newsgroups =
 =========================

Many people prefer the convenience of reading USENET newsgroups rather
than receiving all messages from a mailing list distribution. Some
mailing lists and newsgroups are linked. If you are looking for access
to USENET, read the "CFS/ME Electronic Resources" guide which can be
obtained by sending the command GET CFS-NET TXT as an e-mail message to
the address LISTSERV@SJUVM.STJOHNS.EDU.

 Newsgroups
 ----------

 bit.listserv.cfs.newsletter CFS-NEWS electronic newsletter

Discussions on other health issues can be found in the hierarchies of
be
found in the bionet hierarchy. In early 1995 there will be a proposal 
to
CFS-NEWS electronic newsletter, the CFS Newswire (CFS-WIRE), and 
Catharsis
magazine (CATHAR-M).


 ================================================================
 = E. CFS information on file: the SJUVM & Albany File Servers =
 ================================================================

CFS information files are available on the St. John's University 
Listserv
and on the New York State Department of Health LISTSERV in Albany, New
York. The Albany Listserv is more developed at this time, but the SJUVM
Listserv is slowly developing into a major source for CFS and other 
health
and disability related files.

To use the SJUVM Listserv, send commands to LISTSERV@SJUVM.STJOHNS.EDU.
To get a list of current files available, send the command GET CFS-FILE
FILELIST to this Listserv address. To retrieve specific files, note
the filenames on the FILELIST and then send the command
GET <filename1> <filename2> to the LISTSERV address (each file has a
two-part name). To be notified of newly added files in the future,
send the command SUB CFS-FILE YourFirstName YourLastName to the Listserv
address.

To use the Albany Listserv, send commands by e-mail to
LISTSERV%ALBNYDH2@ALBANY.EDU (or via BITNET to LISTSERV@ALBYNDH2) and 
use
commands similarly as above, i.e. send GET CFS-D FILELIST to this 
Listserv
address.

It is possible to be automatically notified when a certain file is
updated, or even to be sent the updated file, by using certain
LISTSERV file commands.

To be notified of an update to a file of interest to you -- say, CFS-RES
TXT -- you would send the command FUI ADD CFS-RES TXT to the LISTSERV
address. (The file CFS-RES TXT resides at many places, including
LISTSERV@LIST.NIH.GOV.) Or to be sent the entire file, send the command
AFD ADD CFS-RES TXT . For detailed information about automatic file
commands, send the command GET LISTAFD MEMO to any LISTSERV address.

It will be a good idea to establish a password at the LISTSERV where 
your
files of interest reside, even though it is not necessary to do so to 
set


 

(Continued from last message)
FUI or AFD. A password will prevent network hackers from signing you up
for file updates that you don't wish to receive. Send the command PW 
ADD
XXXXXXXX (where XXXXXXXX is replaced with the password you've chosen -- 
be
sure to write it down!). After a password is set, you must therafter
always add PW=XXXXXXXX to the end of any FUI or AFD commands you use.


 ================================================================
 = F. Further information about health resources and LISTSERV =
 ================================================================

A comprehensive guide to health information based on the Internet can be
found in the Health Resources file maintained by Lee Hancock. The 1993
edition can be obtained by sending the command GET CFS MED-RES as an
e-mail message to LISTSERV%ALBNYDH2@ALBANY.EDU. The current edition can
be obtained by ftp from ftp.sura.net, directory /pub/nic/HealthResources
with filenames in the form of medical.resources.xx-xx. It is also
available via gopher from ukanaix.cc.ukans.edu, login kufacts, choose
Departmental Inforamtion and then Medical Center Resources.

Further detailed information about Listserv can be obtained by using the
command GET <filename> and sending it to LISTSERV@LISTSERV.NET (see
filenames below).

 LISTSERV REFCARD Commands reference card
 LISTSERV MEMO Gen'l Introduction to LISTSERV
 LISTSERV SITES A list of all LISTSERV sites
 LISTFILE MEMO File-server functions
 USING SERVERS Help in using LISTSERV,
 DATABASE, and NETSERV
 LISTDB MEMO Database functions
 LISTFAQ MEMO Frequently Asked Questions
 [could be subtitled How to Use
 Database to Answer Your Own
 Questions]


 =======================================================================
 = G. Full service Internet facilities: gopher, ftp, telnet and www =
 =======================================================================

In addition to e-mail based facilities, some CFS resources are 
accessible
by more advanced facilities available on many mainframes, and through 
full
service Internet providers.

 ___________________________________________________________
 ** gopher

"Gopher" is a file-finding utility. The SJUVM Listserv at St. Johns
University in New York can be accessed at gopher.stjohns.edu. It holds
the CFS-FILE file base, and archives of the CFS-WIRE (Newswire) service
and Catharsis magazine.

 ___________________________________________________________
 ** ftp

"ftp" stands for "file transfer protocol", and is a means of transfering
files rapidly through Internet. A few CFS files are available via ftp 
at
list.nih.gov in directory CFS-NEWS. The available files are: the 
monthly
logs of the CFS-NEWS Electronic Newsletter (first see the file
CFS-NEWS.INDEX); the CFS resource file CFS-RES.TXT; and this file.

 ___________________________________________________________
 ** telnet

"Telnet" refers to the remote login capability of Internet. The Project
ENABLE BBS has just begun a telnet facility at enable.wvnet.edu,
available for now from 9am-4:30pm Eastern Time (USA) on weekdays. The
BBS hosts the Fidonet CFS "echo" (i.e. discussion group, listed as
conference 101), and has many CFS files in its file area 23.

The National Capital Free-Net (Ottawa) has a CFS section with discussion
groups and info files. Telnet to freenet.carleton.ca and fill out and
mail in the registration forms. When inside that system, enter the
command "go cfseir" to get to the CFS section.

 ___________________________________________________________
 ** www

World Wide Web, or "www", is a facility which links many different
Internet resources together on a related topic. A www "home page" for 
CFS
is being developed at this time by Sandy Shaw <shaws@ott.hookup.net>. 
If
your system doesn't
have www but does have telnet, you can use www by telnetting into any of
the following: fatty.law.cornell.edu; ukanaix.cc.ukans.edu; 
info.cern.ch;
or www.njit.edu and login as "www". Then enter the following URL code:

 http://www.ncf.carleton.ca/freenet/rootdir/menus/social.services/
 cfseir/CFSEIR.HP.html

(We've wrapped this around to a 2nd line because otherwise it won't fit
in this file, but you must type the entire URL code as one long line.)

Other www resources are: The CFS Village, developed by Jason Hellwege
<GLECJH@latrobe.edu.au> accessible at

 http://www.latrobe.edu.au/Glenn/CFS.html

Also, Molly Holzschlag's <mollyh@indirect.com> home page which contains
pointers to her Catharsis magazine, the Pro-Health consumer service, and
other resources, at

 http://www.indirect.com/user/mollyh/index.html



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











 

<medicine/chronic-fatigue-syndrome/cfs-resources_794409554@rtfm.mit.edu>
resources 
 regarding chronic fatigue syndrome (CFS).


Archive-name: medicine/chronic-fatigue-syndrome/cfs-resources
Last-updated: 1993/9/27

 CHRONIC FATIGUE SYNDROME
 Resource file for patients
 CFS-RES.TXT latest version: September 27, 1993

Copyright (c) 1993 by Roger Burns. Permission is granted to
excerpt this document if the source, and the author (Roger Burns),
are cited. Permission is also granted to reproduce the entirety of
this document unaltered. Note that Fido and Fidonet are registered
marks of Tom Jennings and Fido Software. The listing of public unix
nodes from Bux Technical Services, Inc. shown in Section 7 below is
copyrighted by that company, as indicated.


 CONTENTS

1. CFS -- Information and Networking

2. What is Chronic Fatigue Syndrome?

3. Support Groups

4. Periodicals, Books, Medical Articles

5. Sources of Electronic Information
 A: Discussions / Support
 B: BBSs
 C: Network services
 D: Files on Internet
 E: Back issues of CFS-NEWS

6. BBSs which carry Fidonet's CFS Conference

7. How to Get Access to the Networks
 A. Internet and Usenet
 B. Commercial Networks
 C. Fidonet


This file has been created and is maintained by Roger Burns, a CFS
patient. The author welcomes suggestions for improving this resource
file, and can be contacted in the following ways: (postal) Roger
Burns, 2800 Quebec St. NW #1242, Washington, DC 20008, USA;
(telephone) 1-202-966-8738; (Internet) CFS-NEWS@LIST.NIH.GOV or
CFS-NEWS@NIHLIST.BITNET; (FidoNet) Roger.Burns at 1:109/432; or post
a message on the Fidonet CFS conference.

The latest version of this file is always available on the Internet;
send the command GET CFS-RES TXT as an e-mail message to the address
listserv@list.nih.gov . FTP access is available at nodename
list.nih.gov (128.231.64.10), directory CFS-NEWS, filename
CFS-RES.TXT. The file has also been uploaded as filename CFS-RES.TXT
to the following:
 Project ENABLE BBS, tel. 1-304-759-0727, file area 22;
 GEnie network, Page 970, category 18, file area 11;
 CompuServe forum GOODHEALTH, Library 17, (filename CFSRES.TXT).


===================================================================

Section 1: CFS -- INFORMATION AND NETWORKING

There is not enough information in this file to serve as a
comprehensive resource for CFS patients. For referrals to doctors
and other helpful information, CFS patients are urged to contact
one of the national support groups listed under Section 3 below.
The national groups can also refer you to local support groups, or
advise you on how to start a local support group. Be sure to
subscribe to one of the CFS newsletters such as the CFIDS Chronicle,
the MEssenger, or one of the others published by the national groups
listed in Section 3 below.

ELECTRONIC NEWSLETTER. Current medical research updates can be
obtained by subscribing to CFS-NEWS, the Chronic Fatigue Syndrome
Electronic Newsletter. The newsletter is posted to the CFS "echo"
(or conference) on Fidonet (see the next item, and Section 6) and is
also available as USENET newsgroup bit.listserv.cfs.newsletter . It
is on file on the Project ENABLE BBS, tel. 1-304-759-0727, file area
22. For an Internet subscription, follow the procedure in Section
5-C below (under Internet) or send an e-mail inquiry to the address
CFS-NEWS@LIST.NIH.GOV. Back issues are available at the BBS
mentioned above; also on the Tucson CFS BBS and on Compuserve and
GEnie (see Section 5-E below).

FIDONET CONFERENCE. It can be very helpful to join the CFS
Conference and exchange information with the participants on the
worldwide Fidonet network of personal computers. Access to Fidonet
is usually free of charge. Currently, the conference is carried by
129 BBSs in the USA, Canada, Australia, Britain and the Netherlands.
See Section 6.

CFS DISCUSSIONS ON NETWORKS. There are active CFS discussions, and
some files areas, on the CompuServe, Prodigy, GEnie and Internet
computer networks. If you already have an account on one of these
networks and wish to find where the CFS discussions & information
are, see Section 5-C below. If you wish to find out how to get
access to any of these networks, read Section 7 below.

CFS NEWSWIRE. Support groups exchange news articles and other
information worthy of re-publication on the CFS Newswire, available
on Internet and on those services which connect to Internet
(CompuServe, GEnie, Free-Net and others, and soon Prodigy). For
further information on how to access Internet, see Section 7-A below.
Once on Internet, send the command SUB CFS-WIRE <your> <name> to the
address listserv@sjuvm.stjohns.edu . Newsgroup access is being
further information, contact the CFS/ME Computer Networking Project
described below.

ELECTRONIC MAGAZINE. "Catharsis" is a CFS electronic newsmagazine
which focuses on personal health, intellect and creativity. The
magazine is posted to the CFS "echo" (or conference) on Fidonet (see
the next item, and Section 6). For an Internet subscription, follow
the procedure in Section 5-C below (under Internet) or send an e-mail
inquiry to the editor (see below). The magazine is available as
MEDBASE/CFS Tucson BBS at 1-602-790-7420 and on Compuserve and GEnie
(see Section 5-E below). For inquiries contact editor Molly
Holzschlag at the Electronic Information Exchange, PO Box 42225,
Tucson, AZ 85733-2225, USA or at Fidonet Molly.Holzschlag@1:300/23
or at Internet CATHAR-M@SJUVM.STJOHNS.EDU.

CFS INFORMATION AVAILABLE ON ELECTRONIC FILES. Many helpful
information files on CFS are available on certain BBSs accessible to
anyone with a personal computer and a modem, and also on various
computer networks. See Section 5 below.

NETWORKING PROJECT. The volunteer members of the CFS/ME Computer
Networking Project assist individuals and support groups in using
computer networks. They have written articles that may be
re-published without charge which explain what CFS resources are
available and where and how they can be found, and they have created
a CFS Newswire service for news exchange between CFS support
organizations (see above). For detailed information about Project
services, send postal mail to The CFS/ME Computer Networking Project,
PO Box 2397, Washington DC 20013 USA (when corresponding please
include a stamped, self addressed envelope, or outside of the USA
include an International Reply Coupon obtainable at your post office)
or send Internet e-mail to cfs-me@sjuvm.stjohns.edu or Fidonet mail
to CFS-ME at 1:109/432.



Section 2: WHAT IS CHRONIC FATIGUE SYNDROME?

Chronic Fatigue Syndrome (CFS) is also known as Chronic Fatigue and
Immune Dysfunction Syndrome (CFIDS) and outside of the USA is
usually known as Myalgic Encephalomyelitis (ME). The syndrome is
known primarily by debilitating fatigue accompanied by other
flu-like symptoms, which can vary from patient to patient, including
sore throat, low-grade fever, joint aches and an inability to
concentrate. The symptoms often come and go in cycles. Medical
research has associated CFS with low levels of the brain hormone
cortisol and with viral activity, and on-going research is attempting
to identify a specific virus or other physical agent as the clear
cause.

The treatments currently available have rather limited and
varying effectiveness. The most common recommendations in dealing
with CFS are to get as much rest as possible and to avoid physical
and emotional stress. A summary of medical treatments appears in
chapter 11 of _Running_On_Empty_ by Katrina Berne, Ph.D., and in part
2 of _Living_With_M.E._ by Charles Shepherd, M.D. (see Section 4
below).

CFS sufferers are advised to seek help from a licensed health care
practitioner who is familiar with the syndrome. They are also
urged to join one of the various support groups (see next section)
which advise CFS sufferers, publish newsletters and promote medical
research of the syndrome.



Section 3: SUPPORT GROUPS

NOTE: Some local support groups are listed in files found on the
Project ENABLE BBS (see Section 5-B below) and on Internet (see
Section 5-D).

 === USA ===

 CFIDS Association
 P O Box 220398
 Charlotte, NC 28222-0398
 answering machine: 800-442-3437 (44-CFIDS) or 1-704-362-2343
 information line: 900-988-2343 (988-CFID)
 $2.00 1st minute, $1.00 each thereafter
 fax line: 1-704-365-9755
 membership: $25/yr, includes subscr. to "CFIDS Chronicle" magazine
 services: will provide list of local support contacts, also list of
physicians recommended by local patients; they raise funds for
medical research, lobby U.S. Congress to influence health policy;
the Chronicle magazine is excellent; IFMEA Medical Update (quarterly)
available at $3 per copy.

 National CFS Association
 3521 Broadway / Suite 222
 Kansas City, MO 64111
 telephone: 1-816-931-4777
 Available:
 Quarterly newsletter $15/yr.
 general information packet $1
 patient info. packet $5
 physician's packet $10
 how to be a phone contact $4
 how to form a support group $6
 CFS info. bibliography $3.50

 CFIDS Foundation
 965 Mission St., Suite 425
 San Francisco, CA 94103
 info line: 1-415-882-9986 from 1pm-3pm Pacific Time
 fax: 1-415-882-9758
 publication "CFIDS Treatment News" (about twice yearly); subscr. in
exchange for any donation (tax deductible).

 --- Fibromyalgia ---

 Fibromyalgia Network
 5700 Stockdale Hwy, Suite 100
 Bakersfield, CA 93309
 info line: 1-805-631-1950 from 10am-2pm Pacific Time
 publication: FM Newsletter (quarterly); $15/yr USA, $17/yr Canada
 referrals to local FM groups

 -- EI/MCS: environmental illness / multiple chemical sensitivities -

 Human Ecology Action League
 P.O. Box 49126
 Atlanta, GA 30359
 tel. 1-404-248-1898
 publishes The Human Ecologist (quarterly), resource and reading
lists, information on EI/MCS

 National Center for Environmental Health Strategies
 1100 Rural Avenue
 Voorhees, NJ 08043
 tel. 1-609-429-5358
 annual membership is $15/individual, $20/family, $25/prof.,business,
$10/ltd. income, seniors, youth;
 services: newsletter Delicate Balance; technical assistance;
referrals for medical, legal, ent'l. & public health specialists;
books, reports, info packets; info on workplace issues; advocacy;
Pesticide Exposure Project; help for local support groups

 American Acadmey of Environmental Medicine
 P.O. Box 16106
 Denver, CO 80216
 tel. 1-303-622-9755

 Chemical Injury Information Network
 P O Box 301
 White Sulphur Springs, MT 59645
 contact: Cynthia Wilson, tel. 1-406-547-2255
 support & advocacy; they publish the monthly "Our Toxic Times",
available for any donation (no dues or subscription fees)

 National Foundation of Chemical Hypersensitivities and Allergies
 PO Box 222
 Ophelia, VA 22530
 tel. 1-804-453-7538

 --- Lyme disease ---

 National Lyme Disease Foundation
 P.O. Box 462
 Tolland, CT 06084
 tel. 800-886-5963 or 1-203-871-2900
 monthly newsletter $30/yr; many information pamphlets, videos;
referrals to doctors

 === CANADA ===

 The Nightingale Research Foundation
 383 Danforth Avenue
 Ottawa, Ontario K2A 0E1
 telephone: 1-613-728-9643
 fax: 1-613-729-0825
 membership: $35/yr. includes quarterly newsletter
 services: they support a network of local support groups;
publish a 750 pp. CFS medical textbook edited by Dr. Byron Hyde, MD

 M.E. Association
 246 Queen Street Suite 400
 Ottawa, Ontario K1P 5E4
 telephone: 1-613-563-1565
 fax: 1-613-567-0614
 membership: $35/yr. includes monthly newsletter "The MEssenger";
list of medical articles regarding CFS/ME provided on request.

 National ME/FM Action Network
 3836 Carling Ave., Hwy 17B
 Nepean, ON K2H 7V2
 membership $20.00/yr, soon to have newsletter

 === UK ===

 Myalgic Encephalomyelitis Association
 Box 8
 Stanford-le-Hope
 Essex SS17 8EX
 telephone: 44-0375-642466 advice line, 1-4pm: 44-0375-361013
 fax: 44-0375-360256
 membership: #12/yr dues includes subscr. to quarterly newsletter
"Perpectives"; subscr. to quarterly IFMEA Medical Update is #8/yr
 other services: the advice line shown above gives counseling on
welfare rights & other issues; refers patients to local support
groups; provides medical journal articles & other info to physicians
and others; makes speakers available to give talks; video library.

 Action for M.E.
 P.O Box 1302
 Wells, Somerset BA5 2WE
 membership includes subscr. to Interaction journal 3 times/yr.
 dues: UK #12.50; Europe #17.50; overseas #27.50 air, #17.50 surface
 activities: works in partnership with over 200 local M.E. support
 groups, many of whom actively raise public awareness of the
 illness through media and local MPs etc..
 publications:
 - Interaction journal w/o membership is #5 per year (UK);
 available on tape #2 per issue, cheque payable to ME Tapes,
 send to Melanie Kelly, 29 Blandfield Road, London, SW12 8BQ
 - Therapy Information Pack, 9 factsheets on a comprehensive
 range of M.E. therapies (Members #2:50, Non-Members #3:50)
 - Supplementary Factsheets 35p each:
 Information for Doctors, to help your GP
 A Guide for the Non-sufferer, to educate friends,
 relatives and work colleagues
 Information for Employers
 Advice for Young Sufferers, i.e. under 25`s
 other services:
 - Therapy Information Helpline 0959-525341
 - Postal Library; Press Cuttings Library; Medical Library;
 General Lending Library
 - List of Recommended Consultants; member recommended
 consultants that have been found helpful in the past.
 - Free legal Advice
 - Pen Pals Service
 - Introductory video for sale or hire
 - Publicity posters and recruitment leaflets
 - retail discounts on Efamol Marine, probiotics, etc.

 Northern Ireland Region M.E. Association
 Bryson House
 28 Bedford Street
 Belfast BT7 1HP
 tel. 44-0232-439831

 Scotland M.E. Association
 11 Queens Crescent
 Glasgow G4 9AS
 tel. 44-041-332-1651 fax: 44-041-332-0175

 === AUSTRALIA ===

 ME/CFS Society of New South Wales
 P.O. Box 449
 Crows Nest, NSW 2065
 telephone: 61-2-439-6026 fax: 906-7892
 newsletter (quarterly): AUS$25 /yr.
 $12/yr for students, pensioners, those on benefit programs
 $30/yr for overseas subscribers (airmail)
 services: information; social worker; referrals to local support
 groups throughout NSW

 ME/CFS Society of Victoria
 23 Livingstone Close
 Burwood, Victoria 3125
 newsletter (quarterly)
 telephones:
 admin/social worker: 61-3-888-8991

 ME/CFS Society of South Australia
 P.O. Box 383


 

(Continued from last message)
 GPO, Adelaide, South Australia 5001
 telephone -- counseling & information: 61-8-373-2110

 ME Syndrome Society of Queensland
 P.O. Box 12
 Oxenford, Queensland 4210
 tel. 61-75-73-2772

 CFS Society of Western Australia
 92 Powell Street
 Joondanna
 Perth
 Western Australia 6060
 tel. 61-09-483-6667

 === NEW ZEALAND ===

 A.N.Z.M.E. Society
 P.O. Box 35-429
 Browns Bay
 Auckland 10
 publication "Meeting Place" $35/yr. for overseas airmail subscr.

 === IRELAND ===

 Irish M.E. Trust
 18 Upper Fitzwilliam St.
 Dublin 2
 tel. 353-1761413

 === NETHERLANDS ===

 (Dutch M.E. Foundation)
 M.E. Stichting
 Office: Robert Scottstraat 4
 1056 AX Amsterdam
 Postal address:
 Postbus 57436
 1040 BH Amsterdam
 telephone: none
 membership: any donation
 newsletter: "MEdium" (quarterly), 30 guilders/yr.
 other services: send a self-addressed & stamped envelope to receive
information brochure; IFMEA Medical Update is summarized in MEdium
newsletter, full text is available at cost of copying & postage --
contact the office to ask what the exact price is (different for each
issue)

 === BELGIUM ===

 AFZ M.E.
 Predikherenstraat 2
 B-3000
 Leuven

 === DENMARK ===

 Danish ME/CFS Association
 co/ A Midsem
 Maglehoj 86
 DK-3520 Farum

 === NORWAY ===

 Norges M.E. Forening
 Eikveien 96A
 1345 Osteras
 telephone & fax: 47-2-249879
 membership: 200 krona/yr includes subscr. to newsletter "ME Nyheter"
issued 3 or 4 times per year
 other services: offers subscr. to UK Interaction magazine, 45 krona
per year; provides IFMEA Medical Update (for now, no charge to
members); support group meetings in Oslo

 === GERMANY ===

 Selbsthilfegruppe CFS-Syndrom - Immundysfunktion
 c/o Birke Steinitz
 An St. Swidbert 52
 D-40489 Duesseldorf
 telephone: 49-211-404376

 === ITALY ===

 C.F.S. Associazione Italia
 Segreteria: Via Moimacco 20
 33100
 Udine

 === HONG KONG ===

 Hong Kong ME Information
 60B Conduit Road, 3rd floor

 === PAPUA, NEW GUINEA ===

 Papua, New Guinea Myalgic Encephalomyelitis Support
 Box 44
 Ukarumpa, Via Lac

 === REPUBLIC OF SOUTH AFRICA ===

 ME Awareness Group
 66 Third Street
 Lower Houghton, 2198

 M.E. Association of South Africa
 PO Box 461
 Hillcrest 3650



Section 4: PERIODICALS, BOOKS, MEDICAL ARTICLES

 === PERIODICALS ===

 > IFMEA Medical Update (quarterly) -- contact one of the following
 >CFIDS Chronicle -- see Section 3 above, USA "CFIDS Association"
 >MEssenger (monthly) -- see Section 3 above, Canada "M.E.
Association"
 >Interaction (3/yr) -- see Section 3 above, ME Action Campaign (UK)
or Norges ME Forening (Norway)
 >Meeting Place -- see Section 3 above, New Zealand "ANZME"
 >CFIDS Treatment News (twice yearly) -- see Section 3 above, USA
"CFIDS Foundation"
 >FM Newsletter (quarterly) -- see Section 3 above, USA "Fibromyalgia
Network"
 >Heart of America Newsletter (quarterly) -- see Section 3 above,
USA "National CFS Association"
St., Waltham, MA 02154, USA. $20/yr.
 >CFS DysPatch Newsletter (about 6 per year) -- from CFS Information
& Support Group of Charleston, Inc., 997 Johnnie Dodds Blvd. #811,
Mt. Pleasant, SC 29464. Subscription: USA $15/yr., Canada US$17,
Foreign $24, make check payable to CFS Inc.

 === BOOKS ===

"Living With M.E.: the Chronic/Post-Viral Fatigue Syndrome", new
edition for 1992, by Dr. Charles Shepherd, MD. 380 pp. North
America: send $13.99 to Butterworth Canada Lt'd., 75 Clegg Road,
Markham, Ontario L6G 1A1, CANADA. Canadian customers add 7% GST.
Add $4 if not pre-paid. Accept VISA & M/C. Fax # 1-416-479-2826.
Britain: send #8.00 to Reed Consumer Books, Dept. SP, First Floor,
FREEPOST, Michelin House, 81 Fulham Road, London SW3 6YZ. Accept
Access/American Express/Barleycard/ Diners Club/Visa. Australia: $12
plus $4 postage, send to ME/CFS Society Victoria Inc., 23 Livingstone
Close, Burwood, Victoria, 3125 Australia.

"Chronic Fatigue Syndrome: A Pamphlet for Physicians", publication #
92-484, by the staff of NIH; May 1992; 15 pages; free of charge. For
copies, contact Office of Communications, N.I.A.I.D., Building 31
Room 7A32, 9000 Rockville Pike, Bethesda, MD 20892, tel. 1-202-496-
5717. [Note: the text of this pamphlet is available as an electronic
file, on Internet as filename CFS NIH-DOC and on various BBSs as
CFS-NIH.DOC; see Section 5, subsections B and D, below.]

"Running On Empty: Chronic Fatigue Immune Dysfunction Syndrome"
by Katrina Berne, Ph.D.; 1992; 320 pages; softcover $13.95, hardcover
$21.95, add shipping cost: $2 USA, $3 Canada; make check payable to
Hunter House Inc., 2200 Central Ave., Alameda, CA 94501-4451, USA; or
use VISA or M/C; tel. 1-510-865-5282, fax 1-510-865-4295.

"The Clinical and Scientific Basis of Myalgic Encephalomyelitis /
Chronic Fatigue Syndrome" edited by Dr. Byron Hyde MD, 75 articles by
80 researchers; 1992; 750 pp.; $140.00 Canadian or US, which includes
postage and handling, Canadian orders are not subject to GST; $85
for patients, or contact Foundation for commission policy; VISA,
MasterCard or American Express, include signature, card number and
expiration date; order via telephone 1-613-728-9643 or fax
1-613-729-0825. Make checks or bank drafts payable to Nightingale
Research Foundation, 383 Danforth Avenue, Ottawa, Ontario K2A 0E1,
CANADA.

"Chronic Fatigue Syndromes: The Limbic Hypothesis" by Dr. Jay
Goldstein, M.D. 259 pages. 27 color plates. Softbound $49.95 ISBN
1-56024-904-8; Hardbound $89.95 ISBN 1-56024-433-X. Add shipping &
handling charges: USA, $2.75 by mail ($3.75 by UPS); Outside USA,
surface $4.50, air $6.00. Checks and money orders should be in U.S.
funds. New York State residents should identify their county and add
appropriate sales tax after shipping and handling. In Canada, add 7%
before shipping for Canadian GST. Accept VISA, M/C, AMEX: include
account #, expiration date, signature (for M/C also include bank #);
if paying from outside the USA be sure to allow for the current
exchange rate. US libraries and institutions may be billed later;
send PO# and signature. Orders may be placed by calling tel. (USA &
Canada) 1-800-342-9678 or (international) 1-607-722-5857 from 9am-5pm
EST. Send mail orders to The Haworth Medical Press, 10 Alice Street,
Binghamton, NY 13904-1580, USA.

 === MEDICAL ARTICLES ===

Klimas N; Salvato F; Morgan R; Fletcher M; "Immunologic abnormalities
in chronic fatigue syndrome". J of Clinical Microbiology 28:1403-1410
(June 90) [Study showing that NK cells (a kind of immune cell)
malfunction in CFS patients; other abnormalities]

Buchwald D; Komaroff A; Cheney P; et al.; "A chronic illness
characterized by fatigue, neurologic and immunologic disorders and
HHV-6 infection". Ann Int Med 116:103-112 (Feb 1992) [Study showing
many CFS patients have HHV-6 infections]

Demitrack M; Dale J; Straus S; et al.; "Evidence for Impaired
Activation of the Hypothalamic-Pituitary-Adrenal Axis in Patients
with Chronic Fatigue Syndrome". J of Clinical Endocrinology &
Metabolism 73:1224-34 (Dec 1991) [shows chemical abnormalities in
the brains of CFS patients]

Straus S; Strober W; Dale J; Fritz S; Gould B; "Lymphocyte Phenotype
and Function in the Chronic Fatigue Syndrome". J of Clinical
Immunology 13:30-40 (Jan 93) [Study showing T4 cell (a type of
immune cell) abnormalities in CFS patients]

Lusso P; Malnati M; Garzino-Demo; Crowley; Long; Gallo; "Infection of
natural killer cells by human herpesvirus 6". Nature 362:458-462
(April 1 1993) [HHV-6 -- previously found in CFS patients -- now
shown to kill NK cells (a type of immune cell) -- a small but
important advance in research]



Section 5: SOURCES OF ELECTRONIC INFORMATION:

 === A: DISCUSSIONS / SUPPORT ===

For a description of electronic discussions on Fidonet and other
computer networks, see Section 1 above.

 === B: BBSs ===

 PROJECT ENABLE BBS : 1-304-759-0727
 Cross Lanes, West Virginia USA Sysop: Tom Freeman

 MEDBASE / TUCSON CFS BBS : 1-602-790-7420
 Tucson, Arizona USA sysop: Molly Holzschlag

 USA CFIDS/CFS BBS : 1-207-623-8486
 Augusta, Maine USA Sysop: John Kossowan

 WHOLENOTE BBS : 1-704-251-9863
 Asheville, North Carolina USA Sysop: Will McGruffin
 > over 100 files of CFS information

 Lifeline BBS : 1-904-276-4724
 Jacksonville, Florida USA Sysop: Gail Hitson

 Health Support BBS : 1-904-727-7794
 Jacksonville, Florida USA Sysop: Linda Solomon

 MED-INFO BBS : 1-904-246-1481
 Jacksonville, Florida USA

 SOUTH OF THE RIVER : 1-913-642-7907
 Kansas City, Kansas USA

 NATIONAL CAPITAL FREENET : 1-613-780-3733
 Ottawa, Ontario CANADA (enter GO CFSEIR)

 WHOLEBIT COMPUTER NEWS : 1-613-521-3690
 Ottawa, Ontario CANADA Sysop: Sandy Shaw

 BLACK BAG BBS : 1-302-994-3772
 Newport, Delaware USA Sysop: Ed Delgrosso, M.D.

 WELLSPRING BBS : 1-714-856-7996
 Irvine, California USA Sysop: Steve Clancy
 > a service of the Univ. of California/Irvine Biomedical Library

 SHAKING HANDS : 44-252-626233 Fleet, BRITAIN

 MEGAHERTZ (Midn-6am): 44-81-595-1921
 London, BRITAIN Sysop: Lloyd Hopkins

 DUTCH HEALTH BBS : 31-55-337951 Apeldoorn, NETHERLANDS

 SPACIAL EXPANDER BBS : 61-2-6733559 Sydney, AUSTRALIA

 === C: NETWORK SERVICES ===

This subsection covers "what CFS resources are on the networks, and
where to find them once you're on the network". To find out how to
get on the various networks, see Sections 6 and 7 below.

FIDONET CFS CONFERENCE, also known as the Fidonet CFS "echo", is a
very active CFS discussion group. It's available on BBSs world-wide
that usually charge no user fees. (The conference is described
further in Section 1 above). A list of BBSs that currently carry the
conference is in Section 6 below, and if none are nearby to you then
there is advice on how to get a local Fidonet BBS to carry the
conference, or "echo", in Section 7 below.

PRODIGY computer service has a very active CFS discussion group.
Prodigy is available in the USA only. To get to the CFS section,
[JUMP] Medical Support and then choose the topic devoted to Chronic
Fatigue Syndrome. Prodigy plans to add Internet e-mail in the autumn
of 1993. For sign-up and cost information, see Section 7 below.

GENIE computer service has an active CFS discussion & files area.
Subscribers may go to page 970 and choose Category 18. Files are in
area #11. Internet e-mail is available; for beginner's help with
*sending* Internet mail, enter the command M 207. However, to
regularly send and read Internet mail, use the usual GEnie mail area
at page 200. To send, simply Add "@INET#" to the end of any Internet
address in order to send to that address; e.g. to send mail to the
CFS-NEWS editor whose Internet address is cfs-news@list.nih.gov you
should send your GE Internet mail to cfs-news@list.nih.gov@inet# .
For sign-up and cost information, see Section 7 below.

INTERNET has the CFS-L conference, the CFS-NEWS electronic
newsletter, the CFS Newswire service, the Catharsis Newsmagazine, and
information files available on 2 different Listservs (see the
following subsection). There are also discussion groups on general
immune system dysfunction; fibromyalgia, holistic lifestyle,
vegetarianism, and other topics.

- To join CFS-L or CFS-NEWS, Internet users can send a subscription
command by e-mail in the form of SUB <listname> <your_first_name>
<your_last_name> to the automated administrator at
LISTSERV@LIST.NIH.GOV ; e.g., send the command SUB CFS-NEWS John Doze
to that address. If there is any difficulty, send an inquiry by
e-mail to the moderator at address CFS-NEWS@LIST.NIH.GOV .

- the CFS Newswire (listname CFS-WIRE) and Catharsis magazine
(listname CATHAR-M) are available at a different Listserv address.
To subscribe the, send the command SUB <listname> <your_first_name>
<your_last_name> to the address LISTSERV@SJUVM.STJOHNS.EDU . If
there is any difficulty, send an inquiry to the Newswire operators at
CFS-WIRE-REQUEST@SJUVM.STJOHNS.EDU, or to the Catharsis editor at
address CATHAR-M@SJUVM.STJOHNS.EDU .

Internet also has the FIBROM-L and "immune" discussion groups.
FIBROM-L is a Listserv discussion group devoted to fibromyalgia
issues. To join, type the command SUB FIBROM-L <your> <name>, where
your name replaces <your> <name>, and send it to
LISTSERV@UIUCVMD.BITNET or to LISTSERV@VMD.CSO.UIUC.EDU . To join
"immune", send a request to the list-owner at address
immune-request@weber.ucsd.edu . For information on getting access to
Internet, see Section 7 below. For information about other
discussion groups, send the command GET CFS NET-HELP to the address
listserv@list.nih.gov .

COMPUSERVE computer service has begun a CFS discussion in its Health
& Fitness Forum. Enter GO GOODHEALTH, find message section 17
(Self-Help/Support) and see messages with "CFS" in the subject
header. Be sure that messages which you post include "CFS" in the
subject header. There are information files in GOODHEALTH's Library
17 as well; using the Library section's Browse command, do a keyword
search on "CFS". Compuserve offers Internet e-mail access: enter GO
MAIL and when entering an address, insert >INTERNET: before the
Internet address. For sign-up and cost information, see Section 7
below.

USENET "newsgroups" are available on the UUCP network and are carried
by a number of BBSs (see NIXPUB and PDIAL info in Section 7 below).
Both CFS-NEWS and the CFS-L discussion group are seeking approval to
now, CFS-NEWS is gatewayed to bit.listserv.cfs.newsletter and the

FREE-NETS are non-profit systems in various cities (all inter-
connected) that offer free access to Internet e-mail and other
services (see Section 7 below). From any of the Free-Nets you can
access the CFS section on the National Capital Free-Net in Ottawa (or
telnet to 134.117.1.25). Once in that system, enter the command GO
CFSEIR to get to that section.

MCI-MAIL offers Internet electronic mail and all in-coming messages
are free, thus this service is excellent for receiving CFS-NEWS,
CATHAR-M and monitoring the CFS-L discussion group. However,
out-going messages are expensive. They also offer faxes and other
communication services. For sign-up and cost information, see Section
7 below.

 === D: FILES ON INTERNET ===

A general description of, and means of access to, the Internet
appears in Section 7 below. Information files about CFS are
available for retrieval by e-mail from the Internet. The Albany
Listserv is at address LISTSERV@ALBNYDH2.BITNET or alternatively
LISTSERV%ALBNYDH2.BITNET@ALBANY.EDU. To get a list of available
files, send the message GET CFS-D FILELIST to the above address. To
get any specific file, send the message GET <filename1> <filename2>
(each file has a two-part name). For example, to retrieve the latest
version of THIS file (which is named CFS-RES TXT), send the message
GET CFS-RES TXT . To automatically receive future notices about
updates to the CFS filelist, create the message SUB CFS-D <your>
<name> where your name replaces <your> <name>, and send it to the
LISTSERV address shown above.

A new base of CFS information files is being developed at the SJUVM
Listserv. To get a list of available files, send the message GET
CFS-FILE FILELIST to the address LISTSERV@SJUVM.STJOHNS.EDU or to
LISTSERV@SJUVM.BITNET . To get any specific file, send the message
GET <filename1> <filename2> (each file has a two-part name) to the
Listserv address above.

 === E: BACK ISSUES OF CFS-NEWS ===

CFS-NEWS back issues are stored on several systems.


 

(Continued from last message)

 - via Internet e-mail, send the command GET CFS-NEWS ### (where ###
represents a particular issue number, e.g., for issue #21, ### would
be 021) as e-mail to LISTSERV%ALBNYDH2.BITNET@ALBANY.EDU

 - via Internet anonymous ftp, connect to list.nih.gov
(128.231.64.10), directory CFS-NEWS, monthly logs in the form of

 - on the Project ENABLE BBS in Cross Lanes, West Virginia USA at
tel. 1-304-759-0727 in file area 22;

 - on the Fidonet CFS echo or USENET newsgroup
bit.listserv.cfs.newsletter, check previous messages.

 - on Compuserve in the GOODHEALTH forum, section 17, filenames in
the form of CFSNEW.### (where ### represents a particular issue
number, e.g., for issue #21, ### would be 021) . Also on GEnie on
page 970, Category 18, file area 11, filenames CFS-NEWS.###. And on
the MEDBASE / Tucson CFS BBS at tel. 1-602-790-7420, in the
newsletter section.



Section 6: BBSs WHICH CARRY FIDONET'S CFS CONFERENCE

Fidonet is a volunteer network of personal computer "bulletin board
systems" (BBSs) which can be accessed by anyone with a personal
computer and a modem. The CFS Conference on Fidonet is sponsored by
the West Virginia Research and Training Center in Cross Lanes, West
Virginia USA. The conference can be reached at any of the 128 BBSs
listed below (although additional BBSs are joining every week). Each
day, participants exchange and discuss experiences about treatments
and other issues. If none of these BBSs are particularly near to
you, see subsection 7(B) below about further access to Fidonet BBSs.
The following listing is compiled and maintained by Mr. Sandy Shaw.

 CFS CONFERENCE BBS LIST
 as of July 29, 1993

 === USA ===

 MetaBoard Birmingham AL 1-205-254-3344
 Ken's BBS Montgomery AL 1-205-244-0296
 The Whole-Wheat Twinkie Little Rock AR 1-501-227-9600
 The U.S.A. BBs N Little Rock AR 1-501-753-8575
 Golden Valley PonyRom Kingman AZ 1-602-757-0385
 Comm-Post Tucson AZ 1-602-571-9063
 Prologue Tucson AZ 1-602-741-7851
 Clovis-Net Clovis CA 1-209-292-3530
 The Beemer Board Manteca CA 1-209-823-0854
 One World Los Angeles CA 1-310-372-0987
 Body Dharma Online Berkeley CA 1-510-836-4717
 WPGS Adelanto CA 1-619-246-5166
 Mushin BBS San Diego CA 1-619-535-9580
 Shenk's Express La Mesa CA 1-619-697-8873
 Serenity in Sonoma Santa Rosa CA 1-707-576-0397
 CA Self-Help Library Anaheim CA 1-714-952-2110
 Central Computer Banks Tujunga CA 1-818-352-2993
 Mysteria Tujunga CA 1-818-353-8891
 ST-Keep Support Citrus Height CA 1-916-729-2968
 The Crypts of Chaos Roseville CA 1-916-781-2092
 Denver Goodwill Westminster CO 1-303-650-7732
 Cuerna Verde BBS/2 Pueblo CO 1-719-545-8572
 The Handicap News Shelton CT 1-203-926-6168
 The Dosadi Experiment Wethersfield CT 1-203-257-9906
 EmeroGronican II Wethersfield CT 1-203-721-0706
 Black Bag BBS Newark DE 1-302-994-3772
 The 'us' Project Wilmington DE 1-302-529-1650
 SpaceCon BBS Audubon FL 1-407-459-0969
 The Above Board Sarasota FL 1-813-377-1470
 GammaTown BBS Sunrise FL 1-305-572-7060
 Health Support Jacksonville FL 1-904-727-7794
 Lifeline Jacksonville FL 1-904-276-4724
 MedInfo Jacksonville FL 1-904-246-1481
 The Fire Escape St. Augustine FL 1-904-823-0947
 Southern Crescent Forest Park GA 1-404-363-0194
 The Public's Domain Martinez GA 1-706-860-5070
 Karma *VS Dogma Des Moines IA 1-515-288-7793
 Silver Slipper BBS Pekin IL 1-309-346-6829
 BearWiz Peoria IL 1-309-697-1011
 I Can! BBS Chicago IL 1-312-736-7434
 The Llama Kingdom Rockford IL 1-815-654-7956
 Special Needs BBS Whiting IN 1-219-659-0112
 South of the River Kansas City KS 1-913-642-7907
 N.O.P.C. Club BBS New Orleans LA 1-504-486-7249
 Middlesex News BBS Framingham MA 1-508-872-8461
 StarBase Boston MA 1-617-739-9246
 VIBUG Boston MA 1-617-767-2909
 Real Times Boston MA 1-617-783-8820
 The Twilight Clone Rockville MD 1-301-946-3070
 Light Source Silver Spring MD 1-301-439-7437
 NatureNet BBS Silver Spring MD 1-301-585-5680
 The Idea Link Silver Spring MD 1-301-949-5764
 Message Express Marysville MI 1-313-364-4162
 Boat Town USA Mt. Clemens MI 1-313-468-0912
 New Life BBS Sterling Heights MI 1-313-795-5829
 The Lyme Light Warren MI 1-313-774-5038
 Twin Star Waterford MI 1-313-623-6314
 Ancient Heart Saginaw MI 1-517-752-3203
 DRAGnet Andover MN 1-612-753-1943
 Doc in the Box BBS Jefferson City MO 1-314-893-6099
 On-Line Radio Wave Kansas City MO 1-816-561-3650
 Electronic Dreams BBS Jackson MS 1-601-372-6998
 The Orphanage Charlotte NC 1-704-873-2058
 Deredain's Realm Fair Lawn NJ 1-201-796-2752
 SelfHelp BBS Elizabeth NJ 1-908-289-3981
 The Electronic Trib Albuquerque NM 1-505-823-7700
 CIC/S.I.G.C.A.P.H Churchville NY 1-716-293-2692
 Med TechNet Buffalo NY 1-716-688-1552
 IN*TOUCH Rochester NY 1-716-594-1222
 Acorn I Marlboro NY 1-914-236-3265
 Purple Rose of Cairo Poughkeepsie NY 1-914-473-1697
 Nerd's Nook II Rocky River OH 1-216-356-1772
 Olman BBS Beavercreek OH 1-513-427-9473
 Michele's BBS Miamisburg OH 1-513-435-1163
 The Book Club BBS Columbus OH 1-614-268-8050
 Bitter Butter Better Tigard OR 1-503-620-0307
 Oregon Desert Madras OR 1-503-475-3056
 Modern BBS / Compu Mail Hatboro PA 1-215-638-2334
 Chronicles of Narnia Philadelphia PA 1-215-464-9068
 The Pythonian Philadelphia PA 1-215-676-3618
 ECBear Philadelphia PA 1-215-755-1917
 US Telematics Yardley PA 1-215-493-5242
 Sounding Board Pittsburgh PA 1-412-621-4604
 The Programmers Pit York PA 1-717-845-2725
 Matric Limited Franklin PA 1-814-437-5647
 The Equalizer BBS Dalzell SC 1-803-469-2018
 The Soul Connection San Antonio TX 1-210-674-1242
 FIAWOL/MS-Connection Dallas TX 1-214-790-6472
 National Amputee Connection Dallas TX 1-214-238-0928
 Enterprise BBS Austin TX 1-512-453-5079
 A Little Corner in Time Houston TX 1-713-451-6066
 MacEndeavour Houston TX 1-713-640-1298
 The Recovery Corner Burleson TX 1-817-447-1619
 Sky's The Limit Adanet El Paso TX 1-915-594-7806
 HandiNet BBS Virginia Beach VA 1-804-496-3320
 Le Maison De Metal Lacey WA 1-206-493-0798
 Darkstar System Longview WA 1-206-578-1157
 Rob's Wreck Room Longview WA 1-206-578-1948
 WCIS#2 Seattle WA 1-206-767-7681
 Project Enable Cross Lanes WV 1-304-759-0727

 === CANADA ===

 Generations Calgary AB 1-403-251-5540
 The Messhall Calgary AB 1-403-286-7545
 Alberta On-Line RBBS Edmonton AB 1-403-466-7613
 Owl & PussyCat Abbotsford BC 1-604-436-3271
 Metamorphosis N. Vancouver BC 1-604-986-8791
 Second Chance Nanaimo BC 1-604-753-9137
 Square Hole Nanaimo BC 1-604-756-3177
 T.R.A.C.E. Richmond BC 1-604-272-5888
 The BandMaster Vancouver BC 1-604-266-7754
 Acropolis HST Grimsb ON 1-416-945-6131
 The House of Comments Pickering ON 1-416-831-6102
 The Artsy-Fartsy BBS Toronto ON 1-416-465-7436
 Leftover Hippies Toronto ON 1-416-466-8931
 Can-Do Systems group Toronto ON 1-416-604-1221
 AbleLINK Toronto ON 1-416-650-5411
 Canada Remote Systems Toronto ON 1-416-798-4713
 Crawlin' Kingsnake Kitchener ON 1-519-744-6266
 Chans Land BBS! Stratford ON 1-519-273-5607
 Home Base St. Thomas ON 1-519-633-7253
 Disability Access BBS Ottawa ON 1-613-837-5473
 Echo Valley Ottawa ON 1-613-749-4550
 Ottawa-Orleans P.S. UG Ottawa ON 1-613-747-7665
 Parity Error EMCS Ottawa ON 1-613-737-0966
 The Procrastinators Ottawa ON 1-613-669-0617
 Wholebit Computer News Ottawa ON 1-613-521-3690
 Viking's Cove Trenton ON 1-613-394-5919

 === AUSTRALIA ===

 Heaven's Door St. Ives NSW 61-2-440-8364
 The Runway Stanmore NSW 61-2-569-5130
 Big Tedd's Fitzroy VIC 61-3-417-2440
 Imail & FileMgr Support Coldstream VIC 61-3-739-0028
 The Homeless BBS Frankston VIC 61-3-783-1275
 Atropos Wantirna South VIC 61-3-887-1485
 Perth Omen Perth WA 61-9-244-2111

 === BRITAIN ===

 Shaking Hands Fleet UK 44-252-626233
 MEgahertz (Midn-6am) London UK 44-81-595-1921

 === NETHERLANDS ===

 Dutch Health BBS Apeldoorn NL 31-55-337951

The CFS echo is on Fidonet's North American backbone. To pickup the
CFS echo feed directly, sysops can dial in North America to
1-304-759-0727, in Europe to 44-81-595-1921 (Midn-6am GMT), and in
Australia to 61-3-417-2440. Please post corrections and updates of
the above information to the CFS echo to the attention of Sandy Shaw,
or send e-mail to Mr. Shaw at Fidonet 1:163/221, or Internet
aa328@freenet.carleton.ca .



Section 7: HOW TO GET ACCESS TO THE NETWORKS

This section describes how to get on Internet, Usenet, the commercial
networks, and how to find a BBS near to you that will carry the CFS
conference if none of those listed in Section 6 above are near you.
To see descriptions of what CFS resources are available on these
various networks, see Section 1 and subsection 5-D above.

 A. INTERNET AND USENET

"The Internet" is the name for the rapid communications network which
uses electronic mail and other services to link most mainframe
computers around the world. On the Internet you can get quick access
to the CFS-NEWS electronic newsletter, and you can participate in the
CFS-L worldwide discussion group and other groups, all available
through Internet e-mail.

Access to Internet can be gained through:

 - various "Free-Nets", listed below;
 - free or low-cost public unix nodes, listed below;
 - most of the commercial services described in subsection 5-D
 above, (and whose costs are described in subsection B below);

 FREE / LOW-COST INTERNET ACCESS.

FREENET. The various Free-Nets allow Internet access at little or no
cost. Current Free-Nets (FNs) now operating are as follows:

 Name Location Dial-in login info
 ------------- ------------ -------------- -----------
 Denver FN Denver CO 1-303-270-4865 login: guest
 CapAccess Washington DC 1-202-785-1523 login: visitor
 password: guest
 Tallahassee FN Tallahassee FL 1-904-488-5056 login: visitor
 Heartland FN Peoria IL 1-309-674-1100 login: bbguest
 COIN Columbia MO 1-314-884-7000 login: guest
 Big Sky Telegraph Dillon MT 1-406-683-7680 login: bbs
 Buffalo FN Buffalo NY 1-716-645-6128 login: freeport
 Cleveland FN Cleveland OH 1-216-368-3888 login: Select #2
 at first menu
 Lorain County FN Elyria OH 1-216-366-9721 login: guest
 Youngstown FN Youngstown OH 1-216-742-3072 login: visitor
 TriState Online Cincinnati OH 1-513-579-1990 login sequence:
 cbos, visitor, 9999, <return>
 Medina County FN Medina OH 1-216-723-6732

 Victoria FN Victoria BC 1-604-595-2300 login: guest
 National Capital FN Ottawa ON 1-613-780-3733

 Citynet Wellington NZ write to Computer Services,
 Wellington City Council
 P.O. Box 2199, Wellington, NZ

For more information on Free-nets contact NPTN (National Public
Telecomputing Network), P.O. Box 1987, Cleveland, Ohio 44106 USA,
tel. 1-216-247-5800, FAX: 216-247-3328, Internet info@nptn.org,
anonymous ftp to nptn.org (192.190.49.8) /pub/info.nptn/ .

 ====================================================================
 PUBLIC UNIX NODES (July 5, 1993). The following information is
copyrighted. Below is a list of Public Unix nodes, most of which
offer free or low-cost use of Internet e-mail, and many offer access
to newsgroups. The following data is used at your own risk and cost.

 Name Location Dial-in login info
 ------- ------------------ -------------- -----------
 coyote Tucson AZ 1-602-293-3726
 szebra Sunnyvale CA 1-408-739-1520 login: bbs
 gorn Santa Cruz CA 1-408-458-2289 login: gorn
 uuwest Sunnyvale CA 1-408-245-7726 login: new
 woodowl Livermore CA 1-510-294-8591
 netlink San Diego CA 1-619-453-1115 login: bbs
 cyber Encinitas CA 1-619-634-1376 login: guest
 nyx Denver CO 1-303-871-3324 login: new
 admiral Greenwich CT 1-203-661-1279
 vicstoy Orlando FL 1-407-299-3661 login: bbs
 passwd: (none)
 amaranth Pensacola FL 1-904-456-2003
 oaknet Oak Lawn IL 1-708-425-8739
 lunatix Lexington KY 1-606-233-2051
 genesis North Reading MA 1-508-664-0149
 anubis Jackson MI 1-517-789-5175
 pnet51 Minneapolis MN 1-612-473-2295 login: pnet id: new
 tutor Lebanon NH 1-603-448-5722
 kilowatt Deer Park NY 1-516-586-4743
 tnl Troy NY 1-518-237-2163 login: new
 exuco1 Buffalo NY 1-716-634-6552
 bluemoon Reynoldsburg OH 1-614-868-9980
 techbook Beaverton OR 1-503-220-0636
 m2xenix Portland OR 1-503-297-3211
 medsys Kingsport TN 1-615-288-3957 login: bbs pass: bbs
 sdf Dallas TX 1-214-436-3281
 sugar Houston TX 1-713-684-5900
 nuchat Houston TX 1-713-668-7176
 bitsko Salt Lake City UT 1-801-566-6283
 wyvern Norfolk VA 1-804-627-1828
 tnc Fairfax Station VA 1-703-803-0391
 solaria Milwaukee WI 1-414-321-9287 login: help
 madnix Madison WI 1-608-273-2657 login: bbs

 ichlibix Blainville QU 1-514-435-8896

 infocom Berkshire UK 44-734-34-00-55 login: new
 scuzzy Berlin DE 49-30-694-61-82 login: guest
 isys-hh Hamburg DE 49-40-494867
 odbffm Frankfurt/Main DE 49-69-308265
 nervous Rimini (Fo) IT 39-541-27135
 ixgch Kaiseraugst CH 41-61-8115492
 cavebbs Wellington NZ 64-4-564-2314

The information above is a selection of the complete NIXPUB listing
and is shown here by special arrangement with Bux Technical Services.
(C) Copyright 1993 by Bux Technical Services. This publication is
released for unlimited redistribution over any electronic media, and
is released for reproduction in the publications of any not-for-
profit patient group publications providing it remains in its
original form. Otherwise publishing, removing this copyright notice,
or in any way revising this document's contents is forbidden without
written consent from the owner (contact Bux Technical Services, PO
Box 110, Doylestown, PA 18901 USA; internet phil@bts.com; tel.
1-215-348-9721, Fax 1-215-348-2567).
 ====================================================================

If you want the complete NIXPUB file, which shows many more nodes
than listed above, note that it comes in 2 versions: long, and short
(1-line descriptions). They are available from the UNIX DEPOT BBS (7
bits, even parity) at 1-215-348-9727; login as nuucp, enter the BBS
service, filenames /usr/spool/uucppublic/nixpub and *.short . On the
Internet, send mail with the message text containing "get PUB
nixpub.long" or "get PUB nixpub.short" to mail-server@bts.com.

Another source, the PDIAL file, contains a list of public unix nodes
which offer a wide variety of services for fees that are moderate or
expensive. It is available at the Project ENABLE BBS at telephone
1-304-759-0727 in file area 22 as filename PDIAL.TXT. On Internet,
send email with the subject "Send PDIAL" to the address
info-deli-server@netcom.com .

 B. COMMERCIAL NETWORKS

The CFS resources that are available on the following services were
described in subsection 5-D above. What appears below is information
on costs and how to sign up.

GENIE. To join, call 1-800-638-9636 in the USA or Canada. GENIE
service in the USA is $8.95/month. The hourly rate is $3/off-peak,
$9.50/peak (i.e., Mon-Fri 8am-6pm). In Canada, GEnie is $10.95 per
month. The hourly rate is $4/peak, $12/off-peak. Four hours of free
credit are allowed to all customers each month. Internet e-mail is
billed as part of the overall service.

PRODIGY is available in the USA only. To join call 1-800-776-3449.
There are 3 pricing plans and the cost for each needs local tax
added. The "value plan" is $14.95 per month and includes all use of
"core" services (which do *not* include the CFS/Medical Support area)
for no extra hourly usage fee; "Plus" services are charged by the
standard rates (see below). The "alternate plan 1" is $7.95/month
which includes 2 free hours of core and/or Plus services; extra hours
beyond the 2 free hours are billed. The "alternate plan 2" is
$19.95/month which includes 8 free hours of core and/or Plus


 

(Continued from last message)
services; extra hours beyond the 8 free hours are billed.
Participants in the Medical Support board where the CFS topic is get
a price special break: 5 hours free usage per month plus $2.40 per
each hour thereafter while in the Medical Support/CFS area. Outside
of the Medical Support area, the standard hourly rates, when
applicable, are $4.80/hr for 0 to 3 hours, $4.20/hr for over 3 to 6
hours, and $3.60/hr for over 6 hours billed. There are additional
fees for sending e-mail. Prodigy plans to add Internet e-mail in the
autumn of 1993.

COMPUSERVE. To join in North America, call 1-800-848-8199 (see other
numbers below). They have 2 pricing plans. The Standard plan is
$8.95/month for basic services, and the hourly rates are: 300 baud,
$6/hr; 1200 or 2400 baud, $8/hr; 9600 baud, $16/hr. (INTERNET: There
is no hourly rate while using mail under this plan; instead, Internet
messages sent or received are billed at $0.15 per 1st 7500
characters, $.05 for each 2500 characters thereafter, and there is a
$9/month mail allowance.) The Alternative plan is $2.50/month; the
hourly rates are: 300 baud, $6.30/hr; 1200 or 2400 baud, $12.80/hr;
9600 baud, $22.80/hr. (INTERNET: use of the mail area is simply
billed at this plan's regular hourly rate.) Prices are higher
outside of North America. For overseas information call
1-614-457-0802 (Ohio, USA) or call toll-free in Australia 008025240,
New Zealand 0800446113, U.K. 0800289378, or Germany 01303732.

MCI-MAIL. For sign-up information in the USA call 1-800-444-6245.
The annual fee is $35.00. (INTERNET: All in-coming messages are
free. There is a charge for out-going messages depending on the size
of the message: the first 500 characters are 50 cents; the next 500
are an additional 10 cents; each thousand characters from 1,001 to
10,000 are an additonal 10 cents; each thousand characters above
10,001 are 5 cents each.) For service outside of North America call
1-202-833-8484 in Washington, DC or in the UK call 44-71-9281232 or
in Germany call 49-89-4313071.

AMERICA ON-LINE sign-up information can be found at telephone
1-800-827-6364. The cost is $9.95/month and the connect-time rate is
$3.50/hour after the 5 free hours given each month.

 C. FIDONET

If you don't have a nearby BBS which carries the CFS conference (as
listed in Section 6 above) but would like to have local access, ask
Fidonet BBSs near to you to please carry the conference (usually
referred to as an "echo"). If you don't know of Fidonet BBS nearby
to you, then consider the following sources:

1. If you are the contact person for a support group, then contact
the CFS/ME Computer Networking Project for assistance (see
description & address at the end of section 1 above).

2. Get a copy of the Handicap BBS file and find the Fidonet BBS
nearest to you. Since the BBSs listed in this file already deal with
health-related issues, they may be particularly amenable to a request
to carry the CFS echo. In the file, the Fidonet BBSs will be those
which are accompanied by designations like (123/456). The file can
be found on the Handicap News BBS at 1-203-337-1607, filename
HCAPBBS.LST or *.ZIP. Or do anonymous ftp from
handicap.shel.isc-br.com (129.189.4.184) and get bbslists/hcapbbs.lst
or *.zip. On the Internet, send the message GET CFS-BBS HANDICAP as
e-mail to the address LISTSERV%ALBNYDH2.BITNET@ALBANY.EDU .

3. You may dial up one of the Fidonet coordinators listed below and
leave a message (to "SYSOP") asking for a list of the Fidonet BBSs
nearest you (mention your city and state/province).

 ZONE 1 NORTH AMERICA

 Calif-Nevada, Tustin CA 1-714-838-6539
Central United States, Columbus OH 1-614-841-0355
 Eastern Canada, Ottawa ON 1-613-723-5711
 Mid-Atlantic, Fairfax VA 1-703-323-7654
 Mid-West, Joplin MO 1-417-673-2283
 AZ-CO-NM-UT-WY, Phoenix AZ 1-602-894-8762
 New England, Danbury CT 1-203-791-8532
 North-West, Vancouver BC 1-604-266-1977
SouthEast/Caribbean, Titusville FL 1-407-383-1372
 TX-AR-OK-LA, Houston TX 1-713-496-6319

 ZONE 2 EUROPE & MIDDLE EAST

 Sweden 46-36-121323
 Oslo, Norway 47-2-221064
 Espoo, Finland 358-0-881562
 Denmark 45-32-961764
 Hamm, Germany 49-2381-460077
 Hastings, United Kingdom 44-424-853361
 Ireland 353-402-35308
 Pfaffenthal, Luxembourg 352-42-0201
 Netherlands 31-75-217873
 Schoten, Belgium 32-3-6851123
 Aarau, Switzerland 41-64-230319
 Vienna, Austria 43-1-8154873
 France 33-75676164
 Genova, Italy 39-10-3770080
 Barcelona, Spain 34-3-2193452
 Varna, Bulgaria 359-52-259108
 Lisboa, Portugal 351-1-8520478
 Hungary 36-56-422-189
 Koper, Slovenia 38-66-34986
 Iceland 354-2-14626
 Kfar Saba, Israel 972-52-914-618
 Thessaloniki, Greece 30-31-237763
 Czech Republic & Slovak Republic 42-184-3893
 Turkiye 90-1-2572790
 Tbilisi, Georgia 7-8832-293581
 Minsk, Belarus 7-0172-706000
 Kharkov, Ukraine and Moldova 7-0572-305216
 Lithuania 370-7-798430
 Riga, Latvia 371-2-223986
 Warszawa, Poland 48-22-410374
 Tallinn Estonia 372-2-433023
 Moscow, Russia 7-095-329-2192

 ZONE 3 OCEANIA

 Melbourne, Vic, Australia 61-3-792-3507
 Inglewood, South Australia 61-8-380-5505
 Sandgate, Qld, Australia 61-7-269-6355
 Perth, Western Australia 61-9-257-1309
 Christchurch, New Zealand 64-3-383-1155

 ZONE 4 AMERICA LATINA

 Brazil 55-71-244-8764
 Uruguay 598-2-486616
 Chile 56-2-279-6767
 Argentina 54-1-544-6241
 Panama City, Panama 507-23-9669
 Monterrey NL, Mexico 52-83-56-4119

 ZONE 5 AFRICA

 Gaborone, Botswana 267-373461
 Johannesburg, South Africa 27-171-84102
 Harare, Zimbabwe 263-4-738692
 Nairobi, Kenya 254-2-567043
 Addis Ababa, Ethiopia 251-1-514412
 Lusaka, Zambia 260-1-252892
 Dakar, Senegal 221-21-7627
 Tunis, Tunisia 216-1-70-1827

 ZONE 6 ASIA

 Singapore 65-2410418
 Kowloon, Hong Kong 852-789-1267
 Tainan, Taiwan 886-6-275-3162
 Sagamihara, Japan 81-427-77-0847
 Quezon City, Philippines 63-2-712-0329
 Anjung-Ri, Korea 82-333-691-1602



 

beacon.mit.edu
<medicine/chronic-fatigue-syndrome/cfs-electronic-
resources_794409554@rtfm.mit
.edu>
 resources can be found online on all networks, including 
 Internet, Usenet, BBSs, Fidonet, America Online, Compuserve, 
 Prodigy, GEnie, and Free-nets.


Archive-name: medicine/chronic-fatigue-syndrome/cfs-electronic-resources
Last-updated: 1994/10/1


 CFS / ME ELECTRONIC RESOURCES
 The CFS/ME Computer Networking Project

 "A Guide to the Many Information Resources
 Available via Computer for
 Chronic Fatigue Syndrome / Myalgic Encephalomyelitis"

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

 Second Edition: October 1, 1994

 ____________________________


 CONTENTS


 *** INTRODUCTION ***
 1. CFS/ME Information and Networking
 2. The CFS/ME Computer Networking Project

 *** USING A COMPUTER ***
 3. Buying a computer
 4. Reaching the networks with your computer

 *** ELECTRONIC RESOURCES ***
 5. News sources
 A. News sources.
 B. Easy access to news sources.
 C. Self-service access to news sources and
 other Internet services.
 6. Physicians' discussion group
 7. CFS/ME electronic discussion and support
 A. Fidonet conference
 B. Commercial services
 America Online
 CompuServe
 GEnie
 Prodigy
 C. Internet
 D. Usenet
 E. Free-Nets
 8. Information files
 A. BBSs
 B. Commercial networks
 C. Internet

 *** FURTHER INFORMATION ***
 9. For further information
 10. Credits and copyright notice

 -------------------------------------------------------------
 The printing and distribution of this edition of
 "CFS/ME Electronic Resources" is made possible
 through a grant from the CFIDS Buyers Club (800-366-6056).
 Design contributed by Matt Straznitskas of BrainBUG Graphics.
 -------------------------------------------------------------


 ================== INTRODUCTION ==================

1. CFS/ME information and networking

A growing number of CFS/CFIDS/ME patients, support groups, and doctors 
are
exchanging news and information rapidly on computer networks. The 
following
CFS/ME-related services are available:

* NEWS SOURCES -- Support groups and other organizations exchange news
articles
via electronic mail. One advantage to this exchange is that when 
support
groups want to reprint an article in their newsletter, it won't need to 
be
retyped.

* DISCUSSION GROUPS -- Many individual CFS/ME patients participate in 
general
discussion groups on the computer networks and on Bulletin Board Systems
(BBSs). Much information and support are exchanged. These discussions, 
which
are an excellent resource for those who are homebound or otherwise 
unable to
attend support group meetings, take place on many networks, several of 
which
are accessible at no charge.

* INFORMATION FILES -- There are information files available containing
articles from medical journals and previous editions of the CFIDS 
Chronicle,
documents from NIH, advice on coping, disability, Social Security, etc.

This document lists where in the electronic world these resources can be
found,
and how to find or sign up for the various systems that have them.

Please remember that most of the news and information that appears on 
the
computer networks is the result of important efforts made by our 
national and
local support organizations. If we want to hear good news, and help to 
create
it, we must support and participate in the organizations that are 
working to
help us. Please join and sustain your support and advocacy 
organizations.


2. The CFS/ME Computer Networking Project

The CFS/ME Computer Networking Project (referred to in this document as 
the
Project) is comprised of patient volunteers who are the CFS section 
leaders
from major computer networks. They assist in exchanging news and 
information
on computer networks, and offer help in finding electronic CFS/ME 
resources on
these networks. They established and operate the CFS Newswire service 
(see
Section 5 which follows). The Project's current members are: Roger 
Burns
(Internet); Lucie Dorais (GEnie); Maryka Ford (Prodigy); Molly 
Holzschlag
(Project founder); Ed Isenberg (CompuServe); and Sandy Shaw (Fidonet). 
The
Project's postal addresses are listed in Section 10. It can be 
contacted on
Internet at cfs-me@sjuvm.stjohns.edu and by Fido netmail at CFS-ME at
1:163/221.

 ============== USING A COMPUTER ==============

3. Buying a computer

There are many things you should know about before buying a computer. 
This
guide cannot present all of the advice you should have about computer
purchases, so we suggest that you read a beginner's book such as "Your 
First
Computer" by Alan Simpson (Sybex publishers, tel. (800) 227-2346 or
1-510-523-8233). Study up and be prepared to put good questions to your
computer salesmen before making your purchase.

Important questions to consider are: should you buy a PC (i.e., an IBM
compatible) or a Mac? (factors being price, ease of use, compatibility 
with
systems at your work place); storage needs ("hard disk" size, choose a 
size
that is bigger than you think you'll need at first); peripheral hardware
(modem, video, printer); and software (programs which enable the 
computer to
do
specific tasks). To access the electronic resources featured in this 
guide,
you must have at least a modem and some communication software 
(discussed in
the next section).

You'll probably need more advice after you've made your purchase. There 
are
excellent books on most hardware and software. It will also be 
extremely
useful to get advice from experienced fellow computer owners. To find 
local
PC
users' groups, phone the automated information system at 1-914-876-6678. 
For
Mac users' groups, USA residents can phone (800) 538-9696.


4. Reaching the networks with your computer

To reach the various network information resources and discussion 
groups, your
computer will need a device called a "modem", which translates computer 
data
into signals which can be transmitted through phone lines to other 
computers,
and "communications software", which enables your computer to operate 
the
modem.

Some advice on purchasing: a 14,400 baud modem is currently the best buy 
for
your money. The higher rates a commercial network might charge are more 
than
offset by the much faster rate at which the modem operates, therefore 
saving
you money. If you use one of the commercial networks (see section 7-B 
which
follows), they offer communications software that allow you to reach 
them more
efficiently. For general communications software which can access most
systems, including local BBSs, some popular brands are Procomm Plus and 
Cross
Talk.


 ============== ELECTRONIC RESOURCES ==============

5. News services

A. News sources. The CFS Newswire service of the CFS/ME Computer 
Networking
Project enables support groups and others to exchange news articles and 
other
newsworthy material for use in composing CFS/ME newsletters. News 
material
intended for distribution is electronically submitted to the Newswire 
editors
for review and prospective release. The Newswire is based on the 
Internet,
the
overall network which connects most other computer networks together. 
It is
thus accessible from America Online, CompuServe, Free-Net, GEnie, MCI-
MAIL,
Prodigy and other services. See subsections B and C immediately below 
for
instructions on how to get the Project's Newswire service.

There is also an informal "newswire" procedure on the Fidonet no-cost 
network
of BBSs. Anyone can post material to Fidonet's CFS "echo" (or 
conference)
with
the subject heading of NEWSWIRE, and that material will be posted to all 
of
the
100+ BBSs that carry the CFS "echo". The Project will exchange messages
between the informal Fidonet newswire and the Project's Internet-based
Newswire. However, only those items that have been accepted by the 
Project's
review procedure will be distributed on the Project's Internet-based 
Newswire.
For a description of the Fidonet CFS "echo", see section 7-A which 
follows.

The CFS-NEWS Electronic Newsletter provides current medical research 
updates
and other news for the CFS community. It is published at least once 
every
calendar month. The newsletter is posted to the CFS "echo" on Fidonet, 
and is
also available as USENET newsgroup bit.listserv.cfs.newsletter although 
this
may change soon (for current information, contact the editor listed 
below.) 
On
Internet it is available as listname CFS-NEWS at Listserv nodename
LIST.NIH.GOV. For instructions on getting CFS-NEWS through the 
Internet, see
section 5-C which follows or send an e-mail inquiry to editor Roger 
Burns at
address CFS-NEWS@LIST.NIH.GOV. For access to the Internet, see section 
7-C
which follows (and note that the commercial services described in 
section 7-B
can access Internet). The newsletter is on file on the Project ENABLE 
BBS,
tel. 1-304-759-0727, file area 23. Back issues are also available on 
Internet
(contact the editor) and on CompuServe and GEnie.

"Catharsis" is a CFS electronic newsmagazine which focuses on personal 
health,
intellect and creativity for the CFS community. The magazine is posted 
to the
CFS "echo" on Fidonet. On Internet it is available as listname CATHAR-M 
at
Listserv nodename SJUVM.STJOHNS.EDU. For instructions on getting 
Catharsis
through the Internet, see subsection C which follows or send an e-mail 
inquiry
to the editor listed below. The newsletter is on file on the 
MEDBASE/CFS
Tucson BBS at 1-602-790-7420. Back issues are also available on 
Internet and
on CompuServe and GEnie. For inquiries, contact editor Molly Holzschlag 
via
Internet at CATHAR-M@SJUVM.STJOHNS.EDU or by postal mail at the 
Electronic
Information Exchange, PO Box 42225, Tucson, AZ 85733-2225, USA or at 
Fidonet
Molly.Holzschlag at 1:300/23.

B. Easy access to news sources. Contact the Project (see the last 
paragraph
of
Section 2 above) or any CFS section leader listed in the service 
descriptions
in Section 7 which follows. They can arrange for you to get the 
requested
service.

C. Self-service access to news sources and other Internet services. 
Aside
from
the "easy" method described above, the more adventurous may arrange to 
obtain
these resources by themselves by using the following instructions. 
(These
instructions are for the Newswire and other message-based services. For
information files, see Section 8 which follows.) Access through the no-
cost
Fidonet network is described in section 7-A (newswires are posted as 
messages
to the CFS "echo" discussion group).

Because there are several Internet-based services described in this 
document,
this subsection will serve as a general reference for how to obtain 
Internet
services, using the CFS Newswire as an example. Remember that the CFS
Newswire
service and most other CFS/ME resources on Internet can also be reached 
from
most of the many computer services described in Section 7 which follows.
Check with your service's support staff for specific guidance on how to 
send
Internet mail.

There is an automated procedure on Internet called "Listserv" which will
enable
you to get on the mailing list for the Newswire, or for other Internet
services. If you send a "subscribe" command to a Listserv address by e-
mail,
the Listserv will sign you up for the service you designate in the 
command, as
explained below. The word "subscribe" merely refers to adding one's 
address
to
a mailing list. There is no extra cost for using Listserv-based 
services
other
than the use of e-mail.

In order to subscribe to a service or discussion group via Listserv, you 
must
know the service's "listname" and its "Listserv nodename". (These names 
are
shown throughout this document.) Use Internet electronic mail to create 
a
message which has the following general form:

 SUB listname YourFirstName YourLastName

and send it to the Internet address which has the general form
LISTSERV@<nodename> . For example, suppose Ms. Sally Forth wishes to 
sign up
for the CFS Newswire service. The listname for the CFS Newswire is CFS-
WIRE
and its Listserv nodename is SJUVM.STJOHNS.EDU. Ms. Forth should create 
an
e-mail message which says

 SUB CFS-WIRE Sally Forth

and send it to the address LISTSERV@SJUVM.STJOHNS.EDU . Instructions 
about
how
to submit material for posting will then automatically be sent, as will 
all
future Newswire postings. Be sure that the subscription message is 
typed
precisely and with no other written text, since it is being sent to a 
machine
which will only respond to the correct command words and will be 
confused by
any other material.

Other CFS/ME services are also available on Internet including the CFS-
NEWS
electronic newsletter, the "Catharsis" newsmagazine, the CFS-L 
discussion
group
and more.

As a second example, if Mr. John Doze wishes to sign up for the CFS-L
discussion group, which is based at Listserv nodename LIST.NIH.GOV, he 
should
send the e-mail message

 SUB CFS-L John Doze

to the Internet address LISTSERV@LIST.NIH.GOV . Again, if there is some
difficulty, contact any CFS section leader as shown throughout Section 7 
below
to have these arrangements made for you. To obtain a general help file 
about
how to use Internet and Listserv, send the command GET CFS NET-HELP as 
an
e-mail message to the Internet address LISTSERV@SJUVM.STJOHNS.EDU.


6. Physicians' discussion group

A discussion group for medical doctors and other health professionals 
will
begin in October 1994. It will be accessible through the Internet, and
through
the many computer services which have Internet e-mail (see section 7-C 
below).
To subscribe to the group, contact the group's moderator Roger Burns at
Internet address CFS-MED@LIST.NIH.GOV. Or to sign up directly, send a 
message
which says

 SUB CFS-MED YourFirstName YourLastName

as an e-mail message to the Internet address LISTSERV@LIST.NIH.GOV. For
further help, read the sign-up example in section 5-C above, using 
listname
CFS-MED and nodename LIST.NIH.GOV. Or again, contact the moderator at 
address
CFS-MED@LIST.NIH.GOV.


7. CFS/ME electronic discussion and support

CFS/ME network discussion groups are more than just a way to exchange 
the most
up to date information on research, advocacy and treatment. Close 
friendships
often develop between people who share tips on coping and provide 
sympathy and
understanding at any hour of the day or night. These electronic support
groups
are a valuable resource to many who are housebound or who have no local
support
group to attend.

A. Fidonet conference. Fidonet is a volunteer, world-wide network of 
over
20,000 personal computer BBSs which can be accessed by anyone with a 
personal
computer and a modem. The CFS "echo" (i.e., discussion group) can be 
reached
at any of the 200 BBSs shown on the accompanying tables. The vast 
majority of
these BBSs are accessible free of charge. However, Fidonet messages 
take a
day
or two for distribution, rather than mere minutes as on the commercial
networks
and the Internet. For advice or assistance, post a message to the 
conference
for moderator Sandy Shaw or send him Fido Netmail at 1:163/221 or 
Internet
e-mail at aa328@freenet.carleton.ca.

If none of the BBSs shown on the table are near you, then you should 
find a
Fidonet BBS in your community and request of the operator that their BBS 
carry
the CFS "echo". To do this: (1) Find Fidonet BBSs near you by asking 
your
local computer retailer or computer users' group. Alternatively, you 
may
obtain the file named FIDONETS.TXT which lists net coordinators 
throughout the
world, and search it for cities or phone numbers near you. Then login 
to
their
BBS and ask for a list of local Fidonet BBSs. To get this FIDONETS.TXT 
file,
dial into the Project ENABLE BBS at tel. 1-304-759-0727 (West Virginia, 
USA),
and download it from file area 23. Commercial services may have this 
file in
their file library. Then (2) call several Fidonet BBSs and leave a 
message
for SYSOP, requesting that they carry the CFS "echo". Mention that the 
CFS
"echo" is "on the Fidonet backbone" (that's sysop jargon, and means that 
it's
easy to get).

Internet users will soon be able to access the CFS "echo" by telnetting 
into
the Project ENABLE BBS at node enable.wvnet.edu. To reach the CFS 
"echo" on
this BBS, use the "Join" command to enter conference number 101.

The accompanying table shows those BBSs which have recently carried the
conference. If the CFS conference cannot be found among the "echo"
conferences
on one of these BBSs, leave a message on the BBS addressed to the name 
SYSOP
and ask that the CFS "echo" be carried. This table is occasionally 
updated
and
the latest version can be found on the Project ENABLE BBS at tel.
1-304-759-0727, file area 23, filename CFS-BBS.TXT.

 CFS CONFERENCE BBS LIST as of September 20, 1994

 === AUSTRALIA === || Jacksonville FL 1-904-727-
7794
 || Jacksonville FL 1-904-292-
3904
 St. Ives NSW 61-2-440-8364 || Jacksonville FL 1-904-246-
1481
 Stanmore NSW 61-2-569-5130 || Mount Dora FL 1-904-383-
7841
 Fitzroy VIC 61-3-417-2440 || DeLand FL 1-904-738-
3858
 Victoria VIC 61-3-591-0020 || Eustis FL 1-904-483-
2463
 N. Bayswater VIC 61-3-739-0028 || St. Augustine FL 1-904-823-
0947
 Frankston VIC 61-3-783-1275 || Forest Park GA 1-404-363-
0194
 Wantirna South VIC 61-3-887-1485 || Martinez GA 1-706-860-
5070
 Perth WA 61-9-244-2111 || Des Moines IA 1-515-288-
7793
 || Pekin IL 1-309-346-
6829
 === BRITAIN === || Peoria IL 1-309-697-
1011
 || Chicago IL 1-312-736-
7434


 

(Continued from last message)
 Fleet UK 44-252-626233 || Rockford IL 1-815-654-
7956
 London UK 44-81-595-1921 || Ottawa IL 1-815-433-
6959
 || Whiting IN 1-219-659-
0112
 === CANADA === || Atlanta GA 1-404-368-
1132
 || Kansas City KS 1-913-642-
7907
 Calgary AB 1-403-245-5942 || Lexington KY 1-606-273-
3716
 Calgary AB 1-403-251-5540 || New Orleans LA 1-504-486-
7249
 Calgary AB 1-403-299-9925 || Sun LA 1-504-886-
2157
 Calgary AB 1-403-286-7545 || Framingham MA 1-508-872-
8461
 Edmonton AB 1-403-466-7613 || Danvers MA 1-508-750-
0250
 Abbotsford BC 1-604-436-3271 || Marlborough MA 1-508-481-
7147
 N. Vancouver BC 1-604-986-8791 || Boston MA 1-617-739-
9246
 Nanaimo BC 1-604-753-9137 || Boston MA 1-617-767-
2909
 Prince George BC 1-604-564-5564 || Boston MA 1-617-783-
8820
 Richmond BC 1-604-224-7456 || Rockville MD 1-301-946-
3070
 Richmond BC 1-604-272-5888 || Silver Spring MD 1-301-439-
7437
 Surrey BC 1-604-599-3885 || Silver Spring MD 1-301-585-
5680
 Vancouver BC 1-604-266-1977 || Silver Spring MD 1-301-949-
5764
 Portage la Pr. MB 1-204-857-5927 || Salisbury MD 1-410-543-
2406
 Winnipeg MB 1-204-233-0227 || Marysville MI 1-313-364-
4162
 Winnipeg MB 1-204-338-3423 || Troy MI 1-313-435-
4544
 Winnipeg MB 1-204-831-5375 || Mt. Clemens MI 1-313-468-
0912
 Grimsby ON 1-416-945-6131 || Southgate MI 1-313-284-
3548
 Pickering ON 1-416-831-6102 || Sterling Hts MI 1-313-795-
5829
 Toronto ON 1-416-465-7436 || Warren MI 1-313-774-
5038
 Toronto ON 1-416-466-8931 || Waterford MI 1-313-623-
6314
 Toronto ON 1-416-604-1221 || Saginaw MI 1-517-752-
3203
 Toronto ON 1-416-650-5411 || Grand Ledge MI 1-517-627-
4461
 Toronto ON 1-416-798-4713 || Grand Rapids MI 1-616-361-
2268
 Belleville ON 1-613-962-1359 || Andover MN 1-612-753-
1943
 Gloucester ON 1-613-746-5293 || Jefferson City MO 1-314-893-
6099
 Lynden ON 1-519-647-3595 || Kansas City MO 1-816-561-
3650
 North York ON 1-416-650-6232 || Kansas City MO 1-816-763-
3353
 Kitchener ON 1-519-744-6266 || Kansas City MO 1-816-587-
3971
 Stratford ON 1-519-273-5607 || Kansas City MO 1-816-763-
3353
 St. Thomas ON 1-519-633-7253 || Jackson MS 1-601-372-
6998
 Ottawa ON 1-613-837-5473 || Charlotte NC 1-704-873-
2058
 Ottawa ON 1-613-749-4550 || Fair Lawn NJ 1-201-796-
2752
 Ottawa ON 1-613-747-7665 || Little Falls NJ 1-201-812-
9352
 Ottawa ON 1-613-737-0966 || Elizabeth NJ 1-908-289-
3981
 Ottawa ON 1-613-669-0617 || Albuquerque NM 1-505-823-
7700
 Ottawa ON 1-613-521-3690 || Long Island NY 1-516-736-
6810
 Trenton ON 1-613-394-5919 || Albany NY 1-518-462-
6134
 Thunder Bay ON 1-807-345-7248 || Ballston Spa NY 1-518-885-
4192
 Gatineau QC 1-819-246-8538 || Churchville NY 1-716-293-
2692
 Moose Jaw SA 1-306-692-6765 || Buffalo NY 1-716-688-
1552
 || Rochester NY 1-716-594-
1222
 === USA === || Marlboro NY 1-914-236-
3265
 || Poughkeepsie NY 1-914-473-
1697
 Birmingham AL 1-205-254-3344 || Oklahoma City OK 1-405-745-
5117
 Montgomery AL 1-205-264-8000 || Broken Arrow OK 1-918-455-
5806
 Montgomery AL 1-205-244-0296 || Rocky River OH 1-216-356-
1772
 Pinson AL 1-205-254-6050 || Kent OH 1-216-677-
3437
 Little Rock AR 1-501-227-9600 || Wooster OH 1-216-345-
6995
 Little Rock AR 1-501-224-1605 || Beavercreek OH 1-513-427-
9473
 N. Little Rock AR 1-501-753-8575 || Miamisburg OH 1-513-435-
1163
 Kingman AZ 1-602-757-0385 || Cincinnati OH 1-513-921-
7623
 Hereford AZ 1-602-378-3375 || Columbus OH 1-614-268-
8050
 Tucson AZ 1-602-571-9063 || Tigard OR 1-503-620-
0307
 Tucson AZ 1-602-741-7851 || Madras OR 1-503-475-
3056
 Clovis CA 1-209-292-3530 || Hatboro PA 1-215-638-
2334
 Manteca CA 1-209-823-0854 || Philadelphia PA 1-215-464-
9068
 Los Angeles CA 1-213-766-1356 || Philadelphia PA 1-215-676-
3618
 Los Angeles CA 1-310-372-0987 || Philadelphia PA 1-215-755-
1917
 Berkeley CA 1-510-836-4717 || Yardley PA 1-215-493-
5242
 Adelanto CA 1-619-246-5166 || Pittsburgh PA 1-412-621-
4604
 San Diego CA 1-619-535-9580 || Harmony PA 1-412-452-
8306
 San Diego CA 1-619-546-1536 || Lancaster PA 1-717-393-
9966
 La Mesa CA 1-619-697-8873 || Cranston RI 1-401-943-
0835
 Santa Rosa CA 1-707-576-0397 || York PA 1-717-845-
2725
 Anaheim CA 1-714-952-2110 || Franklin PA 1-814-437-
5647
 Tujunga CA 1-818-352-2993 || Dalzell SC 1-803-469-
2018
 Tujunga CA 1-818-353-8891 || Ladson SC 1-803-873-
5797
 Sacramento CA 1-916-685-2368 || San Antonio TX 1-210-674-
1242
 Citrus Heights CA 1-916-729-2968 || New Braunfels TX 1-210-606-
1754
 Roseville CA 1-916-781-2092 || Dallas TX 1-214-790-
6472
 Westminster CO 1-303-650-7732 || Dallas TX 1-214-238-
0928
 Pueblo CO 1-719-545-8572 || Dallas TX 1-214-528-
1816
 Ansonia CT 1-203-735-5619 || Austin TX 1-512-453-
5079
 Shelton CT 1-203-926-6168 || Cannelview TX 1-713-452-
2114
 Wethersfield CT 1-203-257-9906 || Houston TX 1-713-451-
6066
 Wethersfield CT 1-203-721-0706 || Houston TX 1-713-640-
1298
 Newark DE 1-302-994-3772 || Houston TX 1-713-526-
4528
 Wilmington DE 1-302-529-1650 || Burleson TX 1-817-447-
1619
 Sunrise FL 1-305-572-7060 || Bedford TX 1-817-498-
2344
 Miami FL 1-305-271-2146 || El Paso TX 1-915-594-
7806
 Melbourne FL 1-407-255-9948 || Virginia Beach VA 1-804-496-
3320
 Orlando FL 1-407-299-4762 || Lacey WA 1-206-493-
0798
 Orlando FL 1-407-298-5830 || Longview WA 1-206-578-
1157
 Orlando FL 1-407-381-2798 || Longview WA 1-206-578-
1948
 West Melbourne FL 1-407-728-5548 || Seattle WA 1-206-767-
7681
 Audubon FL 1-407-459-0969 || Milwaukee WI 1-414-761-
2582
 Tampa Bay FL 1-813-961-6242 || Cross Lanes WV 1-304-759-
0727
 Sarasota FL 1-813-377-1470 ||

B. Commercial networks. These networks have broad-based CFS discussion 
groups
that offer quick responses, as well as many informational files and 
occasional
live chats. The cost of reading messages can be minimized by using "off-
line
readers". Ask the service contact people listed for each network below 
for
advice about these utilities.

America Online has a CFS discussion area, an information file section 
and a
weekly live chat. One of the CFS messaging areas can be found by going 
to the
Better Health & Medical Forum, section on Organizations and disABILITIES
(keyword: disabilities), and go to the General Discussions/Chronic 
Fatigue
Syndrome. For further assistance and general information, contact Mary 
Dee
Harris by e-mail at address MDHarris.

CompuServe has a CFS/CFIDS/FMS/ME section in its Health & Fitness Forum 
(enter
GO GOODHEALTH). Discussions occur in message section 16, information 
files
are
in Library 16, and there are regular real-time conferences. For further
assistance and general information, contact CFS section leader Ed 
Isenberg by
e-mail at address 72303,1236.

GEnie has a CFS discussion and files area and a bi-monthly real-time
conference. To reach the CFS discussion section within the disAbilities 
Round
Table, type M970;1 and then Set CATegory 18. To reach the CFS library, 
type
M970:3, then Set CATegory 11. For further assistance and general 
information,
contact CFS section leader Lucie Dorais by e-mail at address L.DORAIS.

Prodigy computer service has an CFS/ME discussion group and informal 
live chat
sessions. To reach the CFS section, choose [JUMP] and type Medical 
Support
BB,
and then select the topic Chronic Fatigue Syndrome. Although there is 
no
formal library section, detailed information is re-posted regularly. 
For
further assistance and general information, contact CFS section leader 
Maryka
Ford by e-mail at ID ANSU44B.

COSTS. The chart below is intended only for making rough comparisons 
between
the different pricing schemes available for the various commercial 
services.
Each plan has special aspects that are not shown on this chart. There 
may be
extra charges for special features,
the communications link, non-USA access, or using higher baud rates. 
Costs
and
available features are subject to change. Get current, accurate and 
complete
information by contacting each network office directly.

 Comparative prices for USA subscribers
 --------------------------------------

 Service Monthly Hourly Sign up phone
 ---------------- ------- ------- -------------
 America OnLine $9.95 $3.50 800-827-6364
 after 5 hrs free

 CompuServe - Alt 2.50 12.80 800-848-8199

 CompuServe - Std 8.95 4.80 800-848-8199

 GEnie 8.95 3.00 800-638-9636
 off-peak
 after 4 hrs free

 Prodigy 7.95 1.20 800-776-3449
 after 5 hrs free

NOTICE: CompuServe: there are two basic plans (Alternative and 
Standard),
examples shown are 2400 baud access, for overseas information call
1-614-457-0802 (Ohio, USA) or call toll-free in Australia 008025240, 
U.K.
0800289378, Germany 01303732 or France 36638122 / GENie peak hours are 
Mon-Fri
8am-6pm local time / Prodigy is available in the USA and service to 
Canada is
being tested (ask for special offer), $7.95 is cheapest of four plans,
discount
rate of $1.20 per hour plus five hours free is available only while in 
the
Medical Support Board (where the CFS section is).

C. Internet. The Internet is the name for the rapid communications 
network
which uses electronic mail and other services to link most mainframe 
computers
around the world. Almost all CFS/ME resources on Internet can be 
obtained
through electronic mail. They are thus accessible through all of the
commercial services shown above, and other services listed below, of 
which
many
are low-cost or free. The various means of access are described further
below.

To obtain a general help file about how to use Internet and Listserv, 
send the
command GET CFS NET-HELP as an e-mail message to the Internet address
LISTSERV@SJUVM.STJOHNS.EDU. For personal assistance about CFS resource 
on
Internet, contact Roger Burns at Internet address CFS-NEWS@LIST.NIH.GOV.

CFS-L discussion group. This patients' discussion group is available 
through
Internet e-mail. To join the group, contact the group's moderator Roger 
Burns
at Internet address CFS-L-REQUEST@LIST.NIH.GOV. Or to sign up directly, 
see
the second example described in section 5-C above.

Other e-mail services. There are many other services based on Internet
e-mail:
CFS-WIRE, CFS-NEWS, and Catharsis magazine (described in Section 5 
above); the
CFS-MED physicians' group (described in Section 6 above); the CFIDS-L 
activist
discussion (for information, contact Roger Burns at
CFIDS-L-REQUEST@AMERICAN.EDU); and the CFS-FILE and CFS-D information 
file
resources (described in Section 8-C which follows).

Full service Internet. There are many high tech services available on
Internet
in addition to e-mail and many of these services can access CFS 
information.
Some full service Internet accounts may be expensive, so inquire about 
costs.
Some intermediate level services are accessible on lower cost systems 
such as
some public unix nodes (see subsection D which follows) and on Free-Nets 
(see
subsection E). A good reference to Internet services is the book by 
Gilster
(described further in subsection D which follows). To see a list of CFS
resources available via Internet gopher, ftp, telnet and WWW, get the 
CFS
NET-HELP file mentioned above.

Access to Internet. There are many ways to reach the Internet, some 
very
expensive and others absolutely free. Many businesses, universities and
government offices give Internet access to their employees (usually 
electronic
mail). The commercial networks described above, and other systems, 
include
Internet access as part of their services. Most commercial networks 
levy an
additional charge for exchanging messages with the Internet. Ask the 
network
contact people listed in section 7-C about ways to minimize these costs.

MCI-MAIL charges $35 (USA) per year and offers unlimited incoming 
Internet
e-mail at no extra charge. Thus this service is excellent for receiving
CFS-WIRE, CFS-NEWS and Catharsis magazine, and monitoring the CFS-L 
discussion
group. However, outgoing messages are expensive. For sign-up 
information, in
the USA call (800) 444-6245. For service outside of North America call
1-202-833-8484 in Washington, DC or in the UK call 44-71-9281232 or in 
Germany
call 49-89-4313071.

Free-nets give access to almost all Internet CFS resources by e-mail and 
they
are usually free. See subsection E which follows. Delphi and Holonet 
provide
full Internet access to North America. For information, call Delphi at 
(800)
695-4005 and Holonet at 1-510-704-0160 (California). There are also 
many
local
providers of Internet services. See the references in subsection D 
below.

D. Usenet. The Usenet network provides thousands of electronic 
discussion
groups on many topics. Usenet discussion groups are called 
"newsgroups". 
They
are accessible on many BBSs, mainframe computers and increasingly on the
larger
Internet e-mail discussion group, i.e. the two share their messages
automatically. The CFS-NEWS newsletter appears on newsgroup
"bit.listserv.cfs.newsletter". Note that these newsgroup names may soon
change. For the latest information and advice, contact Roger Burns at 
address
CFS-NEWS@LIST.NIH.GOV or post a message to any of the newsgroups listed 
above.
The CFS Newswire and Catharsis magazine will soon be distributed on 
Usenet as
well.

The system of Free-Nets gives access to Usenet. Although not every Free-
Net
gives direct access, from any Free-Net it is possible to log into the 
National
Capital (Ottawa) or Buffalo Free-Nets which do provide newsgroups. See
subsection E below regarding Free-Nets. Many local BBSs and Internet
providers
give access to Usenet.

There are many books available about the Internet, and several of them 
list
the
hundred or so local providers of Internet and Usenet access. One such 
book is
"The Internet Navigator" by Paul Gilster. There are several electronic 
files
which list Internet providers. Filenames NIXPUB.SHT, NIXPUB.LNG and 
PDIAL.TXT
are available on the Project ENABLE BBS, tel. 1-304-759-0727, file area 
23.
America Online and CompuServe (subsection B above) provide access to
newsgroups, and other major commercial services may also do so in the 
future.

E. Free-Nets are non-profit systems in various cities that offer free 
access
to
Internet e-mail, Usenet newsgroups, and other services. (A few systems 
charge
a nominal fee.) With the given Internet and Usenet access, users can 
reach
any
of the news, discussion and information services described in sections 
5, 7-C
and 7-D above and in section 8-C which follows.

Volunteers set up their own information sections on local Free-Nets. 
Those
who
log into any one Free-Net can access all of the others. For example, 
from any
of the Free-Nets you can access the CFS/ME section on the National 
Capital
Free-Net (NCF) in Ottawa. Once inside NCF, enter the command GO CFSEIR 
to get
to the CFS/ME section. For the advice and assistance, contact Sandy 
Shaw on
the NCF Free-Net at Internet address aa328@freenet.carleton.ca, or post 
a
message for Sandy on the Fido CFS "echo" (see section 7-A above). 
Current
Free-Nets (FNs) now operating are as follows:

 Name Location Dial-in login info
 ------------- ------------ -------------- -----------
 Los Angeles FN Los Angeles CA 1-818-776-5000 Select #2 at first menu
 Denver FN Denver CO 1-303-270-4865 login: guest
 CapAccess Washington DC 1-202-785-1523 login: guest
 password: visitor
 SEFLIN FN Broward County FL 1-305-765-4332 login: visitor
 Tallahassee FN Tallahassee FL 1-904-488-5056 login: visitor
 Prairienet Champaign-Urbana IL 1-217-255-9000 login: visitor
 Heartland FN Peoria IL 1-309-674-1100 login: bbguest
 UMASSK12 Amherst MA 1-413-572-5583 login: guest
 Great Lakes FN Battle Creek MI 1-616-969-4536 login: visitor
 Educ. Central Mt. Pleasant MI 1-517-774-3790 login: visitor
 COIN Columbia MO 1-314-884-7000 login: guest
 ORION Springfield MO 1-417-864-6100 login: guest
 Big Sky Telegraph Dillon MT 1-406-683-7680 login: bbs
 Buffalo FN Buffalo NY 1-716-645-6128 login: freeport
 SENDIT Fargo ND 1-701-237-3283 login: bbs
 password: sendit2me
 Tri-State Online Cincinnati OH 1-513-579-1990 login: visitor
 Cleveland FN Cleveland OH 1-216-368-3888 login: Select #2
 at first menu
 Learning Village Cleveland OH 1-216-247-6196 login: visitor
 Gtr Columbus FN Columbus OH 1-614-292-7501 login: guest
 Dayton FN Dayton OH 1-513-229-4373 login: visitor
 Lorain County FN Elyria OH 1-216-366-9721 login: guest
 Youngstown FN Youngstown OH 1-216-742-3072 login: visitor
 Medina County FN Medina OH 1-216-723-6732
 Ocean State FN Providence RI 1-401-831-4640
 Rio Grande FN El Paso TX 1-915-775-5600 login: visitor
 Seattle Comm. Net. Seattle WA 1-206-386-4140 login: visitor
 Tri-Cities FN Tri-Cities WA 1-509-375-1111

 Vancouver FN Vancouver BC 1-604-222-4723
 CIAO! FN Trail BC 1-604-368-5764 login: guest
 Victoria FN Victoria BC 1-604-595-2300 login: guest
 National Capital FN Ottawa ON 1-613-780-3733
 Chubucto FN Halifax NS 1-904-494-8006

 Finland FN Helsinki FI 358-929292 login: visitor
 FN Erlangen-Nuernburg DE 49-9131-85-8111 login: gast
 Citynet Wellington NZ write to Computer Services
 Wellington City Council
 P.O. Box 2199, Wellington, NZ

Many new Free-Nets are being developed. For the latest information on
available Free-Nets, dial into tel. 1-216-247-6196 (Ohio), login as 
"visitor"
and search for "NPTN" information.


8. Information files

There are information files available on most of the networks and on 
many
BBSs.
They include medical articles, articles from previous editions of the 
CFIDS


 

(Continued from last message)
Chronicle, documents from NIH, advice on coping, disability, Social 
Security
issues, etc.

A. BBSs. Certain BBSs have special sections or are devoted entirely to
carrying many helpful information files on CFS/ME. Note the following:

 Cross Lanes, West Virginia 1-304-759-0727
 Tucson, Arizona 1-602-790-7420
 Smithtown, New York 1-516-736-6810
 Los Angeles, California 1-213-766-1356
 Kansas City, Kansas 1-913-642-7907
 Ottawa, Illinois 1-815-433-6959
 Newport, Delaware 1-302-994-3772
 Irvine, California 1-714-856-7996
 Ottawa, Ontario CANADA 1-613-521-3690
 Fleet, BRITAIN 44-252-626233
 Apeldoorn, NETHERLANDS 31-55-337951
 Sydney, AUSTRALIA 61-2-673-3559

The CFS-NEWS Electronic Newsletter can be found on most of the BBSs 
shown
above. The CFS Newswire is carried by the CFS/ME/FMS BBS of Long Island 
(New
York, tel. 1-516-736-6810) and the Shrine of the Cybernetic Madonna BBS 
(Los
Angeles, tel. 1-213-766-1356). Back issues of the CFIDS Chronicle can 
be
found
on the MEDBASE CFS BBS (Arizona, tel. 1-602-790-7420). Publications of 
the
(USA) National CFS & Fibromyalgia Association can be found on the South 
of the
River BBS (Kansas City, tel. 1-913-642-7907, file group 2, area 26).

B. The commercial networks also carry many CFS information files, 
notably
America Online, CompuServe and GEnie. See the references to these file
sections in the network descriptions that appear in section 7-B above.

C. Internet has CFS/ME information files, available for retrieval by e-
mail.
(For Internet access, see section 7-C above.) The CFS-FILE database is 
the
original source for electronic copies of the CFIDS Chronicle, the 
HealthWatch
Newsletter (published by the CFIDS Buyers Club), the newsletter of the 
Canada
ME/Fibromyalgia Action Network, and Catharsis magazine, in addition to 
the
many
standard medical articles, advice on disability, etc. To obtain a list 
of all
available files, create an e-mail message which says GET CFS-FILE 
FILELIST and
send it to the Internet address LISTSERV@SJUVM.STJOHNS.EDU. When you 
see
files
of interest, you can retrieve them by sending commands of the form GET
filename1 filename2 (each file has a two-part name). For assistance, 
contact
Molly Holzschlag at address CFS-FILE@SJUVM.STJOHNS.EDU.

There is a separate base of CFS files at the Albany Listserv. This 
service
stores back issues of CFS-NEWS and has other files associated with the
Internet
CFS-L discussion group. Send the message GET CFS-D FILELIST to address
LISTSERV%ALBNYDH2@ALBANY.EDU and then send commands in the form of GET
filename1 filename2, just as with the CFS-FILE database described above. 
For
assistance, contact Roger Burns at address CFS-NEWS@LIST.NIH.GOV.

 ========== FURTHER INFORMATION =============

9. Further information

More detailed information about CFS/ME resources can be found in the
CFS-RES.TXT file. The latest version of the CFS-RES.TXT file is always
available at the following places. On the Internet, send the command 
GET
CFS-RES TXT as an e-mail message to the address 
LISTSERV@SJUVM.STJOHNS.EDU .
The file has also been uploaded as filename CFS-RES.TXT to the 
following:
 Project ENABLE BBS, tel. 1-304-759-0727, file area 23;
 GEnie network, Page 970, file area 11;
 CompuServe forum GOODHEALTH, Library 16, (filename CFSRES.TXT).

An electronic copy of this guide can be downloaded as filename CFS-
NET.TXT (or
on CompuServe as CFSNET.TXT) at the same places shown above.

Further advice may also be sought from the CFS/ME Computer Networking 
Project
(see contact information in Section 2 above).


10. Credits and copyright notice

This guide is produced by the volunteer efforts of CFS patients. We
distribute
it free of charge, but printing this guide does cost money. Please send 
in a
donation so that this work can continue. Checks can be made payable to 
the
CFS/ME Computer Networking Project and sent to our USA address of P.O. 
Box
11347, Washington, DC 20008 or to the Canadian address of 3332 McCarthy 
Road,
P.O. Box 37045, Ottawa, Ontario K1V 0W0.

We'd like to give thanks to those who have distributed or promoted this
document and other information about CFS/ME computer networking. In
particular, we wish to recognize the M.E. Association of Canada, the 
CFIDS
Buyers Club, the CFIDS Association of America, and Matt Straznitskas for 
the
design and lay-out of this document.

Support groups and others have permission, and are encouraged, to 
reproduce
this document for re-distribution. Individuals may get single copies by
sending a stamped, self-addressed legal sized envelope to either of the
addresses above. Outside of the USA or Canada, please include an
International
Reply Coupon which can be obtained at your post office.

Copyright (c) 1994 by The CFS/ME Computer Networking Project. 
Permission is
also granted to excerpt this document if the source, and the author (The
CFS/ME
Computer Networking Project), are cited. Permission is also granted to
reproduce the entirety of this document unaltered. All trademarks, both
marked
and not marked, are the property of their respective owners. Much of 
the
material above is derived from the CFS-RES.TXT file copyright (c) 1994 
by
Roger
Burns and is reproduced here with permission.

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


===========================

 

faq_794409554@rtfm.mit.edu>
as
 chronic fatigue syndrome (CFS), also known as myalgic 
encephalo-
 myelitis (M.E.) and chronic fatigue and immune dysfunction
 syndrome (CFIDS).


Archive-name: medicine/chronic-fatigue-syndrome/cfs-faq

In the future we may split this document into several parts, but for now 
this document is quite long (about 1300 lines) and you may wish to file 
it 
or print it out.
 
 The CFS FAQ
 
 C O N T E N T S
Part 0: Administrivia
0.00 Copyright
0,01 Introduction
0.02 Disclaimer
0.03 Further information
0.04 Development of this FAQ
0.05 Credits
 
Part 1: General
1.01 What is CFS?
1.02 What causes CFS?
1.03 Is CFS a "real" disease?
1.04 Who gets CFS?
1.05 Shouldn't this illness have a better name?
 
Part 2: Medical issues
2.01 How do I find good medical care for CFS?
2.02 What symptoms are used to diagnose CFS?
2.03 What are the specific treatments available for CFS?
2.04 What is the role of stress in CFS?
2.05 What research is currently going on?
2.06 How does CFS usually begin?
2.07 How long can CFS last?
2.08 Is CFS contagious?
2.09 Is CFS genetic?
2.10 Do people die from CFS?
2.11 Is CFS related to depression?
2.12 Is CFS related to AIDS?
2.13 Does CFS increase the likelihood of cancer?
2.14 How does CFS affect children?
2.15 How does CFS relate to pregnancy?
2.16 How does CFS relate to other similar illnesses (such as 
fibromyalgia,
 multiple chemical sensitivities, Gulf War syndrome, Lyme disease,
 candida, etc.)?
 
Part 3: Life problems created by CFS
3.01 How does one live with CFS?
3.02 How do I find support groups?
 
Part 4: Income security: Job and/or disability benefits
4.01 How do I handle problems about my job?
4.02 What problems do I face in seeking disability benefits?
 
Part 5: CFS information resources
5.01 What other FAQs are available?
5.02 What books are available?
5.03 What newletters and magazines are available?
5.04 What CFS resources are available on Internet and Usenet?
5.05 What CFS resources are available on other electronic networks?
5.06 What national organizations are there?
 
Part 6: Important information
6.01 What else is important for me to know about CFS?
6.02 What is "May 12 / International Awareness Day"?
 
Appendices
A1. Where to get the current version of this FAQ
A2. Articles on-line
A3. Common abbreviations
 
----------------------------
 
Part 0: Administrivia
 
----------------------------
 
0.00 Copyright
 
The CFS FAQ is copyright (c) 1995 by Roger Burns on behalf of the 
Internet 
CFS Group. Permission is granted to redistribute or quote this document 
for non-commercial purposes provided that you include an attribution to 
the 
Internet CFS group, the contact address of CFS-L-REQUEST@LIST.NIH.GOV, 
the 
FAQ's version number and date, and at least two locations from which a 
current version of this FAQ may be retrieved (see Appendix 1). For any 
other use, permission must be obtained in writing from Roger Burns 
<CFS-L-REQUEST@LIST.NIH.GOV>.
 
----------------------------
 
0.01 Introduction
 
This document answers frequently asked questions (f.a.q.) about chronic 
fatigue syndrome (CFS).
 
----------------------------
 
0.02 Disclaimer
 
The information presented here is not medical advice and must not be 
used 
as a substitute for medical advice. It is important that anyone who has 
CFS should consult with a licensed health care practitioner who is 
familiar 
with the syndrome.
 
----------------------------
 
0.03 Further information
 
This FAQ is not comprehensive, and there are (or will be) separate FAQs 
that describe treatments, electronic resources, and other specialized 
topics. These related FAQs can likely be found near to where you have 
found this one. Or consult the CFS Index of FAQs which can be obtained 
in 
several ways, including sending the command GET CFS INDEX as an e-mail 
message to address LISTSERV%ALBNYDH2@ALBANY.EDU.
 
----------------------------
 
0.04 Development of this FAQ
 
This is a document whose development is in progress. It is being 
developed 
by the Internet CFS Group (that is, the participants of the Internet 
information about the group and this project, send electronic mail to 
CFS-L-REQUEST@LIST.NIH.GOV. To participate in developing this document, 
post messages to the FAQ: topic of the CFS-L mailing list or the 
 
----------------------------
 
0.05 Credits
 
This initial draft was written by Roger Burns, with some phrases 
borrowed 
from "A Guide to CFIDS" by the CFIDS Association, and from Camilla 
Cracchiolo. All errors are mine (but read the disclaimer above).
 
----------------------------
 
Part 1: General
 
----------------------------
 
1.01 What is CFS?
 
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, brain fog, 
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 
mildly 
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.
 
----------------------------
 
1.02 What causes CFS?
 
The cause of the illness is not yet known. Current theories are looking 
at 
the possibilities of neuroendocrine dysfunction, viruses, environmental 
toxins, genetic predispostion, or a combination of these. For a time it 
was thought that Epstein-Barr Virus (EBV), the cause of mononucleosis, 
might cause CFS but recent research has discounted this idea. The 
illness 
seems to prompt a chronic immune reaction in the body, however it is not 
clear that this is in response to any actual infection -- this may only 
be 
a dysfunction of the immune system itself.
 
A recent concept promulgated by Prof. Mark Demitrack is that CFS is a 
generalized condition which may have any of several causes (in the same 
way 
that the condition called high blood pressure is not caused by any one 
single factor). It *is* known that stress, physical or emotional, seems 
to 
make CFS worse.
 
Some current research continues to investigate possible viral causes 
including HHV-6, other herpes viruses, enteroviruses, and retroviruses.
Additionally, co-factors (such as genetic predisposition, stress, 
environment, gender, age, and prior illness) appear to play an important 
role in the development and course of the illness.
 
Many medical observers have noted that CFS seems often to be "triggered" 
by 
some stressful event, but in all likelihood the condition was latent 
beforehand. Some people will appear to get CFS following a head injury 
or 
surgery or some other traumatic event, yet it's unlikely that these 
events 
of their own could be a primary cause.
 
----------------------------
 
1.03 Is CFS a "real" disease?
 
At this early point, many doctors remain unconvinced that CFS is a 
genuine 
illness, although it is slowly increasing in acceptance. The reluctance 
is 
due in part to the facts that (1) no specific cause has yet been found, 
(2) 
there is no observable marker that doctors can use to specifically 
identify 
the illness, and (3) most doctors are not yet familiar with that 
peer-reviewed research which does tend to legitimize this diseease.
 
Emerging illnesses such as CFS typically go through a period of many 
years 
before they are accepted by the medical community, and during that 
interim 
time patients who have these new, unproven illnesses are all too often 
dismissed as being "psychiatric cases". This has been the experience 
with 
CFS as well.
 
But many top-level researchers are showing that this is a distinct, 
organic 
illness. This includes research by Anthony Komaroff (Harvard), Jay Levy 
(UCSF), Nancy Klimas (U. Miami), Andrew Lloyd (U. New South Wales), 
Stephen 
Straus (NIH), and others.
 
Physicians and scientists may find the following citations of interest:
 
Levine P; et al. "CFS: Current Concepts" (proceedings of the Oct. 1992 
CFS 
medical conference), Vol. 18 Suppl. 1, January 1994, Clinical Infectious 
Diseases.
 
Klimas N; Salvato F; Morgan R; Fletcher M; "Immunologic
abnormalities in chronic fatigue syndrome". J of Clinical
Microbiology 28:1403-1410 (June 90) [Study showing that NK
cells (a kind of immune cell) malfunction in CFS patients; other
abnormalities]
 
Buchwald D; Komaroff A; Cheney P; et al.; "A chronic illness
characterized by fatigue, neurologic and immunologic disorders
and HHV-6 infection". Ann Int Med 116:103-112 (Feb 1992) [Study
showing many CFS patients have HHV-6 infections]
 
Demitrack M; Dale J; Straus S; et al.; "Evidence for Impaired
Activation of the Hypothalamic-Pituitary-Adrenal Axis in
Patients with Chronic Fatigue Syndrome". J of Clinical
Endocrinology & Metabolism 73:1224-34 (Dec 1991) [shows
chemical abnormalities in the brains of CFS patients]
 
Straus S; Strober W; Dale J; Fritz S; Gould B; "Lymphocyte 
Phenotype and Function in the Chronic Fatigue Syndrome". J of
Clinical Immunology 13:30-40 (Jan 93) [Study showing T4 cell
(a type of immune cell) abnormalities in CFS patients]
 
Lusso P; Malnati M; Garzino-Demo; Crowley; Long; Gallo;
"Infection of natural killer cells by human herpesvirus 6".
Nature 362:458-462 (April 1 1993) [HHV-6 -- previously found in
CFS patients -- now shown to kill NK cells (a type of immune 
cell) -- a small but important advance in research]
 
----------------------------
 
1.04 Who gets CFS?
 
Few studies address this question. Several show that 70 to 80 percent 
of 
CFS patients are women, although some researchers say that these are 
normal 
figures for any immune-related illness. Some studies indicate that CFS 
is 
less common among lower income people and minorities, but critics point 
out 
that the average CFS patient sees so very many doctors before they can 
get 
a diagnosis, that only those with great access to medical care get 
counted 
in such studies, thus giving a bias with regards to income and race.
 
----------------------------
 
1.05 Shouldn't this illness have a better name?
 
There have been many complaints since the name CFS was adopted in 1988 
by 
the U.S. Centers for Disease Control that this name trivializes the 
illness 
and re-inforces the perception that it may not be a legitimate disease. 
U.S. policy currently is that there is much medical literature tied to 
the 
current name, and that a change of name should wait at least until an 
accepted biological marker is found. There have been attempts to 
associate 
an eponym, such as "Nightingale Syndrome", with the scientific name of 
the 
illness but there has been no groundswell of support yet for any 
specific 
eponym or other alternative name.
 
----------------------------
 
Part 2: Medical issues
 
----------------------------
 
2.01 How do I find good medical care for CFS?
 
It is very important to find a health practitioner who is familiar with 
this illness. CFS can be mimicked by many other illnesses, and if you 
in 
fact have another illness that is not properly diagnosed, you may be 
losing 
out on getting treatments that might be effective for you.
 
It is still an uphill struggle to find a doctor who is experienced in 
diagnosing and treating CFS. The best source of advice for identifying 
local doctors who may be familiar with CFS is your local support group. 
And the best way to identify local support groups is to contact one of 
your 
national organizations (see question 5.06). If there are no CFS- 
knowledgeable doctors in your area and you wish to find an out-of-town 
specialist, you may read about such specialists from time to time in the 
newsletter of your national organization.
 
If your own doctor is sympathetic but not knowledgeable, you might 
gather 
together some medical articles which discuss CFS treatments and 
encourage 
your doctor to study them. (See the next question, part B.)
 
----------------------------
 
2.02 What symptoms are used to diagnose CFS?
 
A. CFS definition.
 
In addition to the official researchers' definition discussed below, 
patients and experienced clinicians have noticed symptom patterns that 
seem 
prominent in CFS. These are described in question 1.01 above, and also 
include the observations that cognitive dysfunction often increases over 
time (over several years), and that brain scans often show that blood 
flow 
to the brain is decreased.
 
CFS is defined somewhat differently by various medical groups in 
different 
countries. The 1994 research definition published by the U.S. Centers 
for 
Disease Control and Prevention recommends a step-wise approach for 
identifying CFS cases. The first step is to clinically evaluate the 
presence of chronic fatigue, i.e. "self-reported persistent or relapsing 
fatigue lasting 6 or more consecutive months".
 
Conditions that explain chronic fatigue should exclude a diagnosis of 
CFS. 
These are:
 
 - "any active medical condition that may explain the presence of
 chronic fatigue ..."
 
 - any previous condition which might explain fatigue and which has
 not documentably come to an end;
 
 - "any past or current diagnosis of a major depressive disorder with
 psychotic or melancholic features; bipolar affective disorders;
 schizophrenia of any subtype; delusional disorders of any subtype;
 dementias of any subtype; anorexia nervosa; or bulimia";
 
 - substance abuse within 2 years prior to onset;
 
 - severe obesity.
 
The following should not exclude a diagnosis of chronic fatigue:
 
 - conditions which cannot be confirmed by lab tests, "including
 fibromyalgia, anxiety disorders, somatoform disorders, nonpsychotic
 or nonmelancholic depression, neurasthenia, and multiple chemical
 sensitivity disorder";
 
 - any condition which might produce chronic fatigue but which is
 being sufficiently treated;
 
 - any condition which might produce chronic fatigue but whose
 treatment has already been completed;
 
 - any finding which on its own is not sufficient to strongly suggest
 one of the exclusionary conditions.
 
After the above criteria are met, the following core criteria for CFS 
are
applied: "A case of the chronic fatigue syndrome is defined by the 
presence of the following:
 
 1) clinically evaluated, unexplained persistent or relapsing chronic
 fatigue that is of new or definite onset (has not been lifelong); is 
not
 the result of ongoing exertion; is not substantially alleviated by 
rest;
 and results in substantial reduction in previous levels of 
occupational, 
 educational, social or personal activities; and
 
 2) the concurrent occurrence of four or more of the following 
symptoms,
 all of which must have persisted or recurred during 6 or more 
consecutive
 months of illness and must not have predated the fatigue:
 
 - self-reported impairment in short term memory or concentration 
severe 
 enough to cause substantial reduction in previous levels of
 occupational, educational, social or personal activities;
 
 - sore throat;
 


 

(Continued from last message)
 - tender cervical or axillary lymph nodes;
 
 - muscle pain;
 
 - multi-joint pain without joint swelling or redness;
 
 - headaches of a new type, pattern or severity;
 
 - unrefreshing sleep;
 
 - and post exertional malaise lasting more than 24 hours."
 
The journal citation for the CDC definition article is: Keiji Fukuda, 
Stephen Straus, Ian Hickie, Michael Sharpe, James Dobbins, Anthony 
Komaroff, and the International CFS Study Group. "The Chronic Fatigue 
Syndrome: A Comprehensive Approach to Its Definition and Study". Ann 
Intern 
Med. 1994;121:953-959.
 
B. Clinical views. Several helpful guides to diagnosis have been 
written 
by researchers and experienced clinicians, including an article by 
Charles 
Lapp and books by Charles Shepherd and by David Bell. See the 
references 
under the next question on treatments.
 
 ---------------------------------------------------------------
 
2.03 What are the specific treatments available for CFS?
 
Many treatments are available. Most seem to be of limited usefulness, 
however different patients will respond differently and in some 
instances 
there is good response. An FAQ on treatments is being developed, and 
more 
detail about these issues will be discussed there.
 
A. Avoid stress. As odd as it may seem, typically the most beneficial 
program is for the patient to avoid stress and to get lots of rest. 
This 
is usually the most effective regimen, among others that might also be 
undertaken. Failure to avoid stress often leads to short-term and 
long-term set-backs that can be serious. Many patients believe that if 
they had done more to avoid stress in the early phases of the illness, 
they 
would not have become nearly so disabled later on. The correlation 
between 
stress and the progress of this illness appearss to be strong.
 
B. Medications. Treatments tend to address the symptoms, since the 
underlying mechanism of the disease is not really understood. 
Medications 
which are helpful are often those which have immune-modulating 
characteristics. CFS patients are unusually sensitive to drugs and they 
usually must take doses that are 1/4 or less than standard doses. Some 
drugs will be a big help to some patients and little or no help to 
others. 
And drugs that seem to work for a while may stop being effective later.
 
According to studies presented at the October 1994 CFS medical 
conference,
widely used treatments included: SSRIs ("selective serotonin re-uptake 
inhibitors" such as Zoloft, Paxil and Prozac) used to address fatigue,
cognitive dysfunction and depression; low dose TCAs ("tricyclic 
anti-depressants" such as doxepin and amitriptyline) for sleep disorder, 
and muscle and joint pain; and NSAIDs ("non-steroidal anti-inflammatory 
drugs" such as ibuprofen and naproxen) for headache, and muscle and 
joint 
pain. Other treatments often prescribed are Klonopin, IMgG, nutritional
supplements (particularly anti-oxidants, B-vitamins generally and
B-12 specifically), herbs, and acupuncture. Less often prescribed
were chiropractic therapy, IVgG, kutapressin, antivirals, interferon,
and transfer factor.
 
C. Role of exercise. While patients will need to avoid stressful 
activities, and each patient's toleration for stress will be different 
(and 
can change), it is nonetheless important for patients who can exercise 
to 
do so, up to their level of toleration.
 
D. Dietary changes. CFS patients appear to be alcohol intolerant. 
Other 
food products often recommended against include caffiene, sugar and 
nutrasweet. Since in many patients it appears that the immune system is 
over-active, it may be more important than usual to take nutritional 
supplements to replenish burnt up reserves. 
 
Many patients have or develop food sensitivities, and in these cases 
relief 
may be found by avoiding foods that prompt problems. Patients tend to 
gain 
weight and they don't have vigorous exercise available as a 
counterbalance, 
so diet needs to be monitored with this in mind.
 
E. Secondary problems. There can be several related problems, such as 
yeast, that need to be watched out for. Also, CFS has so many symptoms 
that it's easy to ascribe all new anomalies to this disease. But CFS 
patients are not exempt from getting other illnesses also, therefore it 
is 
important to regularly monitor your health and to consult with your 
doctor 
about the changes as they progress.
 
F. Article references. The following are citations of articles on CFS 
medical treatment that your doctor may find useful.
 
Conservative approaches
 
"Management of a Patient with Chronic Fatigue Syndrome" by Nelson Gantz;
appears as Chapter 14 in the book "Chronic Fatigue Syndrome" edited by
David Dawson and Thomas Sabin, 1993, Little, Brown & Co.
 
"Treatment of the Chronic Fatigue Syndrome: A Review and Practical 
Guide",
Edith Blonde-Hill and Stephen D. Shafran, Drugs 46(4):639-651, October
1993.
 
"Psychotropic Treatment of Chronic Fatigue Syndrome and Related
Disorders", PJ Goodnick and R Sandoval; J Clin Psychiatry 54(1):13-20
January 1993
 
Moderate/aggressive approaches
 
[The following are available by mail order from the CFIDS Association of
America, Inc., PO Box 220398, Charlotte, NC 28222-0398 USA. Several of
these are also available on Internet by e-mail retrieval; see 
instructions
below.]
 
"Chronic Fatigue Syndrome is a Real Disease", Charles Lapp; North 
Carolina
Family Physician, Winter 1992. $3.00
 
Series of articles in Sept. '92 "Diagnosis" edition of CFIDS Chronicle, 
by
Drs. Bell, Calabrese et al., Cheney and Lapp, Jay Goldstein, Hickie and
Wakefield, Klimas, and other useful letters and reports. $8.00
 
Series of articles in Fall 1993 "Treatment" edition of CFIDS Chronicle, 
by
Drs. Cheney and Lapp, Dimitri Viza and Giancarlo Pizza, Perry Orens,
Edward Conley DO, Burke Cunha, James McCoy, Jay Goldstein and others. 
$10.00
 
Book: "The Doctor's Guide to Chronic Fatigue Syndrome", Dr. David Bell, 
1994. $21.00.
 
Book: "Living With M.E.", Dr. Charles Shepherd, M.D., revised 1993. 
$15.00
 
There are a series of medical articles on the diagnosis and treatment of 
CFS which are available on the SJUVM Listserv on the Internet. See 
Appendix 2 at the end of this document.
 
----------------------------
 
2.04 What is the role of stress in CFS?
 
Preliminary research suggests that CFS may involve a brain disorder 
(specifically, HPA dysfunction) which affects the stress response system 
in 
our bodies. CFS patients are standardly observed to be hypersensitive 
to 
stress. High-stress events sometimes seem to "trigger" the first 
appearance of the illness (see question 2.06), and they will usually 
worsen 
the symptoms if the illnes has already developed. Because stress is 
often 
mistakenly thought of as a purely emotional phenomenon with no physical 
aspect, the correlation of CFS with stress makes some people imagine 
that 
CFS must a non-physical "psychological illness". Medical studies show 
that 
stress plays an important role in several immune-mediated illnesses, and 
in 
fact a new field of research called psychoneuroimmunology has been 
created 
to study just this phenomenon.
 
----------------------------
 
2.05 What research is currently going on?
 
There is a great deal of research going on, regarding the possible cause 
of 
CFS, many of its symptom mechanisms, possible biological markers, 
treatments, and epidemiology.
 
Dr. Mark Demitrack (U. Michigan) and Dr. Stephen Straus (NIH) and others 
are studying the dysfunction of the hypothalamic-pituatary-adrenal axis 
as 
being a possible major explanation for CFS. Dr. Anthony Komaroff 
(Harvard) 
and Dr. Dharam Ablashi (Georgetown) are researching the possible roles 
of 
HHV-6 and EBV (to decipher these abbreviations, see Appendix 3). Dr. W. 
John Martin (U. So. Calif.) is studying the "Stealth" virus. Dr. 
Michael 
Holmes (U. Otago) is researching another mysterious, virus-like 
particle. 
Drs. Nancy Klimas, Roberto Patarca (of U. Miami) and Jay Levy (UCSF) are 
investigating immunological abnormalities. Drs. Hugh Dunstan and 
Timothy 
Roberts (U. Newcastle) are researching a possible biological marker 
found 
in urine. Drs. Paul Cheney, Charles Lapp (of Cheney Institute) and Jay 
Goldstein (CFS Institute) are studying various treatments. The CDC team 
led by Drs. Keiji Fukuda and William Reeves are undertaking prevalence 
studies in the USA. These are jsut a few of the more prominent studies 
now 
on-going.
 
----------------------------
 
2.06 How does CFS usually begin?
 
For a slight majority of patients, the illness begins suddenly as though 
one had come down with the flu. Except that this "flu" doesn't seem to 
completely go away. For many other patients, the onset appears 
gradually 
over a long period of time.
 
In many cases, a high-stress event seems to "trigger" the illness. 
There 
are many cases in which CFS appears to have begun with a severe head 
injury, for example. But since such events seem to have no apparent 
logical connection to the illness that follows, many have speculated 
that 
the CFS was latent in people beforehand in these cases, and that the 
stress 
of trauma merely triggered the stress-hypersensitivity aspect of the 
illness. Some have further speculated that other stressful factors in 
our 
environment, be they microbes or pollution, may also prompt this illness 
to 
bloom.
 
----------------------------
 
2.07 How long can CFS last?
 
The illness varies greatly in its duration. A few recover after a year 
or 
two. More will recover from 3 to 6 years after onset. Others may 
recover 
after a decade or more. But for some, the illness seems to simply 
persist.
 
CFS often occurs in cycles, and succeeding cycles often become worse. 
It 
can be frustrating to obtain some relief, but then not know whether you 
have recovered or if you are merely between cycles.
 
----------------------------
 
2.08 Is CFS contagious?
 
Since the cause of the illness is not known, the question of contagion 
is 
not known. Many studies suggest that there is no correlation between 
CFS 
and casual or intimate contact. On the other hand, there are infrequent 
but occasional reports of cluster outbreaks of CFS. How that can 
happen, 
while at the same time in other instances intimate family members do not 
pass on the disease, remains one of the mysteries of this illness.
 
----------------------------
 
2.09 Is CFS genetic?
 
Several studies suggest that there may be a genetic component to CFS. 
This 
is not surprising since CFS seems to involve immune dysfunction to some 
degree, and immune-related illnesses often have a genetic component. 
The 
evidence on this point is not clear. And the fact that there seem to be 
cluster outbreaks of this illnes seems to argue against genetics as 
being 
the sole factor.
 
----------------------------
 
2.09 Do people die from CFS?
 
Essentially, the answer is no. Little about how CFS works in our bodies 
would suggest that it could be fatal. The slowing of metabolism and the 
weakening of muscle function, possibly including heart function, might 
raise some possibilities. But as a general matter, by no means should 
CFS 
be considered to be a terminal illness.
 
On another front, CFS in the more severe cases can be so disabling, and 
the 
public and medical understanding of the disease can be so minimal, that 
many people have seen their lives taken away through loss of job, loss 
of 
support from family and friends, and loss of ability to take care of 
oneself. In the face of these vast irrational and deeply painful 
changes, 
there are many CFS patients who have taken their own lives. And so in 
these cases, what was the cause of death?
 
----------------------------
 
2.10 Is CFS related to depression?
 
Many emerging illnesses, before they have gained acceptance by the 
medical 
community, have initially been discounted as being hysteria, depression, 
somatoform disorders, etc. One hundred years ago, polio was dismissed 
in 
just that fashion. When CFS gained notice in recent times, many of its 
symptoms were correlated to depression, and many un-read physicians 
today 
still believe that's what CFS is. Much recent research, notably the 
finding by Demitrack that cortisol levels are low in CFSers whereas in 
depressed people they are high, indicates that CFS is not depression. 
(A 
politico-economic aspect of this question is that health insurers have 
an 
incentive to classify patients as having temporary illnesses that can be 
treated cheaply in a short time. Depression is consdered to be a 
short-term, treatable illness.)
 
Another issue is that CFS patients can get "secondary depression" if the 
fact that their lives have been turned upside down bothers them for some 
reason. (Some people get worried when they lose their job, family and 
friends.)
 
----------------------------
 
2.11 Is CFS related to AIDS?
 
Enough is known about the mechanisms of both diseases to say that they 
are 
not the same. The fact that they both seem to involve the immune 
system, 
and that some not-fully-researched viruses might have some effect in 
both, 
have caused a few people (notably Neenyah Ostrom, a writer for the New 
York 
Native) to speculate that there is a common mechanism. The facts that 
CFS 
has no correlation to HIV nor shows any AIDS-like breakdown of the 
immune 
system shows that these illnesses are not the same. It is nonetheless 
true 
that the broad family of immune-related illnesses are becoming 
increasingly 
important in these times.
 
----------------------------
 
2.12 Does CFS increase the likelihood of cancer?
 
There have been no formal studies about this question to date. 
Clinicians 
dealing with the illnes have not noticed any higher incidence of cancer 
among their CFS patients. The issue is raised, however, because some 
resarch shows that CFS patients have impaired natural killer (NK) cell 
activity, and it is the NK cells which primarily protect against cancer. 
So this is an issue that bears watching.
 
----------------------------
 
2.13 How does CFS affect children?
 
One of the special aspects of CFS in children is that their self-image 
and 
there sense of their own abilities do not develop in a normal fashion, 
because they have little or no memory of their pre-CFS abilities. This 
surely plays an important and negative role in their personal 
development.
 
----------------------------
 
2.14 How does CFS relate to pregnancy?
 
If anything, in many cases the illness seems to be lessened for the 
mother 
during pregnancy, and no problems have been noticed with the children. 
Another aspect to consider is that the responsibilities of parenthood 
are 
many and are stressful, and this should be considered when planning a 
family.
 
----------------------------
 
2.15 How does CFS relate to other similar illnesses (such as 
fibromyalgia,
 multiple chemical sensitivities, Gulf War syndrome, Lyme disease,
 candida, etc.)?
 
There are several conditions whose symptoms and patterns are so similar 
that many believe there must be a common mechanism involved. If HPA 
dysfunction is truly involved in all these conditions, then this would 
be 
little surprise since neuroendocrine mechanisms are both complex and 
delicate, and thus minor variations in the theorized dysfunction might 
well 
produce the variants we are seeing in these related conditions.
 
----------------------------
 
Part 3: Life problems created by CFS
 
----------------------------
 
3.01 How does one live with CFS?
 
- Know that it's not you. It takes a lot to adjust to your new, 
lessened 
capabilities, and the adjustment is made more difficult by the 
expectations 
of you and those around you who have been long accustomed to dealing 
with 
your "normal, healthy self".
 
- Patients often find an equilibrium point at which they can function. 
As 
in combating any chronic illness, a positive hopeful attitude is 
essential.
 
- Be prepared for a possible lack of acceptance from some from whom you 
might expect support. This may be a shock, but when you cannot 
regularly 
"go bowling" with the gang, or you increasingly depend on being 
accomodated 
at home or on the job, and when you have a condition that your doctor 
may 
not certify or that other people have already heard of as "that yuppie 
disease", then your emotional world will become quite different.
 
- Find new sources of support. It will be important to create a new 
family-and-friends support structure. This can be done through CFS 
support 
groups, electronic networking, pen pals, and other means. 
 
- You will need to take the time to create a new self image for 
yourself, 
to know that your new physical limitations do not limit you as a person, 
as 
a soul, no matter what other people are thinking. And take some advice 
from those who have travelled this difficult road before you -- consider 
reading from books like those below:
 
 "The Alchemy of Illness" by Kat Duff, 1993, Pantheon Book, New York. 
$19
 
 "Recovering from Chronic Fatigue Syndrome: A Guide to Self-
Empowerment"
 by William Collinge, 1993, The Body Press/Perigee, New York. $13.95
 
 "Living With Chronic Fatigue Syndrome" by Timothy Kenny, 1994, 
Thunder's
 Mouth Press, New York. $12.95
 
----------------------------
 
3.02 How do I find support groups?
 
To find local support groups, ask your national support organizations. 
See 
the list under question 5.06.
 
To find electronic support groups, see the references under questions 
5.04 
and 5.05 below.
 
----------------------------
 
Part 4: Income security: Job and/or disability benefits
 
----------------------------
 
4.01 How do I handle problems about my job?
 
 - If your work is, or will likely be, affected by your illness, educate 
your boss about your condition. Do this soon. You may need his support 
later when more problems may arise, and it will be easier to educate him 
while you are still relatively productive and "credible".
 
 - Understand that you might have to make some severe changes: a change 
of
job, or perhaps an involuntary loss of your job and a shift to 
disability 
benefits.
 
 - Beware of the trap of losing important disability benefits if you 
switch 
to part time work. Many CFS patients whose health was spiralling 
downwards 
had switched to part-time work to preserve their place with their 
employer. 
Later, when their health deteriorated even more and they needed to seek 
disability benefits, they found out too late that those benefits for a 
part-time employee did not include a livable income, whereas if they had 
gone straight from full-time to disability, the disability payments were 
much more livable. Be careful.
 
----------------------------
 
4.02 What problems do I face in seeking disability benefits?


 

(Continued from last message)
 
There are several info files at the Albany and SJUVM Listservs that have 
advice about applying for disability benefits. See the CFS Network Help 
file about how to access these (described under question 5.04).
 
----------------------------
 
Part 5: CFS information resources
 
----------------------------
 
5.01 What other FAQs are available?
 
There are CFS FAQs about resources on Internet/Usenet, on BBSs and 
commercial networks, and others. A treatments FAQ will be developed, 
and 
other specialized FAQs may also be developed.
 
All of these are described in the CFS Index to FAQs. See the posting on 
command GET CFS INDEX as an e-mail message to the address 
LISTSERV%ALBNYDH2@ALBANY.EDU.
 
----------------------------
 
5.02 What books are available?
 
Note the support-oriented books listed under question 3.01 above, and 
the 
medical articles shown under questions 1.03, 2.02 and 2.03. Here are 
other 
good resources:
 
"A Doctor's Guide to CFS", by Dr. David Bell, 1994. 275 pp. $21 from 
the 
CFIDS Association (see below).
 
"Living With M.E.: the Chronic/Post-Viral Fatigue Syndrome", new edition 
for 1992, by Dr. Charles Shepherd, MD. 380 pp. North America: $15 from 
the 
First 
Floor, FREEPOST, Michelin House, 81 Fulham Road, London SW3 6YZ. Accept 
Access/American Express/Barleycard/ Diners Club/Visa. Australia: $12 
plus 
$4 postage, send to ME/CFS Society Victoria Inc., 23 Livingstone Close, 
Burwood, Victoria, 3125 Australia.
 
"Running On Empty: Chronic Fatigue Immune Dysfunction Syndrome"
 
"Chronic Fatigue Syndromes: The Limbic Hypothesis" by Dr. Jay Goldstein, 
M.D. 259 pages. 27 color plates. $49.00. Available from the CFIDS 
 
[The books above can be purchased from the CFIDS Association of America, 
Inc., P.O. 220398, Charlotte, NC 28222-0398, USA.]
 
"Chronic Fatigue Syndrome: A Pamphlet for Physicians", publication # 
92-484, by the staff of NIH; May 1992; 15 pages; free of charge. For 
copies, contact Office of Communications, N.I.A.I.D., Building 31 Room 
7A32, 9000 Rockville Pike, Bethesda, MD 20892, tel. 1-202-496-5717. 
[Note: 
the text of this pamphlet is available as an electronic file, on the 
Albany 
Listserv as filename CFS NIH-DOC and on various BBSs as CFS-NIH.DOC; see 
the CFS Network Help file described in question 5.04.]
 
"The Clinical and Scientific Basis of Myalgic Encephalomyelitis /
Chronic Fatigue Syndrome" edited by Dr. Byron Hyde MD, 75 articles by 80 
researchers; 1992; 750 pp.; $140.00 Canadian or US, which includes 
postage 
and handling, Canadian orders are not subject to GST; $85 for patients, 
or 
contact Foundation for commission policy; VISA, MasterCard or American 
Express, include signature, card number and expiration date; order via 
telephone 1-613-728-9643 or fax 1-613-729-0825. Make checks or bank 
drafts payable to Nightingale Research Foundation, 383 Danforth Avenue, 
Ottawa, Ontario K2A 0E1, CANADA.
 
----------------------------
 
5.03 What newletters and magazines are available?
 
The most widely read CFS journal in the world is the CFIDS Chronicle, 
available for $30 yearly from the CFIDS Association of America, Inc., 
P.O. 
220398, Charlotte, NC 28222-0398, USA.
 
Each national organization also has its own publication (see question 
5.05) 
most of which are very informative.
 
The new medical periodical _Journal_of_Chronic_Fatigue_Syndrome_ is now 
available. One year for individuals is $36, for institutions $60, 
libraries $75. In Canada add 30% plus 7% GST. Other non-USA add 40%. 
Send to Haworth Press Inc., 10 Alice St., Binghamton, NY 13904-7981, 
USA.
 
There is also the Update (quarterly) from the Massachusetts CFIDS 
808 Main St., Waltham, MA 02154, USA. $20/year.
 
----------------------------
 
5.04 What CFS resources are available on Internet and Usenet?
 
There is a patients discussion group, available at CFS-L@LIST.NIH.GOV or 
as 
newsletter, 
the CFS Newswire service, Catharsis magazine, and many helpful articles 
and 
other documents available on-line through e-mail. An Internet 
discussion 
group for health professionals is being developed.
 
All of these are described in the CFS Network Help FAQ. This FAQ will 
be 
e-mail by sending the command GET CFS NET-HELP as a message to the 
address 
LISTSERV@SJUVM.STJOHNS.EDU.
 
For advice on how to access Internet and Usenet, see the CFS/ME 
Electronic 
Resources guide described in the next question.
 
----------------------------
 
5.05 What CFS resources are available on other electronic networks?
 
There are CFS discussion groups and information files available on 
various 
BBSs, Free-Nets, and on the major commercial networks such as GEnie, 
Prodigy, Compuserve and America Online. To get advice on where to find 
these resources, and on how to get generally plugged in to the world of 
CFS 
computer networking, you should get the free pamphlet "CFS/ME Electronic 
Resources" which is available in print and on-line.
 
For a printed copy, please send a stamped, self-addressed legal-sized 
envelope to the following address in the USA:
 
 CFS/ME Computer Networking Project
 P.O. Box 11347
 Washington, DC 20008-0547
 
Canadians should send to:
 
 CFS/ME Computer Networking Project
 3332 McCarthy Road
 P.O. Box 37045
 Ottawa, Ontario K1V 0W0
 
>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.
 
An electronic copy of this guide will be posted regularly to the 
newsgroup 
copy via e-mail, send the command GET CFS-NET TXT to the address 
LISTSERV@SJUVM.STJOHNS.EDU. The guide is also available for download 
from 
the Project ENABLE BBS in West Virginia, tel. 1-304-759-0727, file area 
23, 
filename CFS-NET.TXT.
 
----------------------------
 
5.06 What national organizations are there?
 
 === USA ===
 
 CFIDS Association of America, PO Box 220398, Charlotte, NC 28222-0398
 tel. 800-442-3437 or 1-704-362-2343, fax 1-704-365-9755. dues $30/yr
 CFIDS Foundation, 965 Mission St., Suite 425, San Francisco, CA 94103
 info: 1-415-882-9986 from 1pm-3pm Pacific, fax: 1-415-882-9758
 publication "CFIDS Treatment News" 2/yr for any donation (tax ded.)
 RESCIND, 9812 Falls Road, Suite 114-270, Potomac, MD 20854
 fax: (after 6pm ET) 1-301-983-5644. Internet: MAY12@American.edu
 National CFS & Fibromyalgia Association, 3521 Broadway / Suite 222
 Kansas City, MO 64111, tel. 1-816-931-4777, dues $15/yr
 Fibromyalgia Network, 5700 Stockdale Hwy, Suite 100 Bakersfield, CA 
93309
 info: 1-805-631-1950 from 10am-2pm Pacific, dues $15 USA, $17 Canada
 Human Ecology Action League, P.O. Box 49126, Atlanta, GA 30359
 tel. 1-404-248-1898, publishes The Human Ecologist (quarterly)
 National Center for Environmental Health Strategies, 1100 Rural Avenue
 Voorhees, NJ 08043, tel. 1-609-429-5358, dues $15
 American Acadmey of Environmental Medicine, PO Box 16106 Denver, CO 
80216
 tel. 1-303-622-9755
 Chemical Injury Information Network, PO Box 301, White Sulphur Springs, 
MT
 59645, contact: Cynthia Wilson, tel. 1-406-547-2255
 National Foundation of Chemical Hypersensitivities and Allergies, PO 
Box
 222, Ophelia, VA 22530, tel. 1-804-453-7538
 
 === CANADA ===
 
 M.E. Association, 246 Queen Street, Suite 400, Ottawa, Ontario K1P 5E4
 tel. 1-613-563-1565, fax: 1-613-567-0614. Dues $35
 Nightingale Research Foundation, 383 Danforth Avenue, Ottawa, Ontario
 K2A 0E1, tel. 1-613-728-9643, fax: 1-613-729-0825. Dues $35
 National ME/FM Action Network, 3836 Carling Ave., Hwy 17B, Nepean, ON
 K2H 7V2. Dues $20.
 
 === UK ===
 
 Myalgic Encephalomyelitis Association, Box 8, Stanford-le-Hope, Essex
 SS17 8EX, tel. 44-0375-642466 advice line, 1-4pm: 44-0375-361013
 fax: 44-0375-360256. Dues 12 pounds
 Action for M.E., P.O Box 1302, Wells, Somerset BA5 2WE, dues 12.50 
pounds
 
 === AUSTRALIA ===
 
 ME/CFS Society of New South Wales, PO Box 449, Crows Nest, NSW 2065
 tel. 61-2-439-6026 fax: 906-7892. dues $25
 ME/CFS Society of Victoria, 23 Livingstone Close, Burwood, Victoria 
3125
 tel. 61-3-888-8991
 ME/CFS Society of South Australia, PO Box 383, GPO, Adelaide, South 
 Australia 5001. tel. 61-8-373-2110
 ME Syndrome Society of Queensland, PO Box 12. Oxenford, Queensland 4210
 tel. 61-75-73-2772
 CFS Society of Western Australia, 92 Powell Street, Joondanna, Perth
 Western Australia 6060. tel. 61-09-483-6667
 
 === NEW ZEALAND ===
 
 A.N.Z.M.E. Society, PO Box 35-429, Browns Bay, Auckland 10
 
 === NETHERLANDS ===
 
 M.E. Stichting, Postbus 57436, 1040 BH Amsterdam. Dues 30 guilders/yr.
 
 === BELGIUM ===
 
 AFZ M.E., Predikherenstraat 2, B-3000, Leuven
 
 === DENMARK ===
 
 Danish ME/CFS Association, co/ A Midsem, Maglehoj 86, DK-3520 Farum
 
 === NORWAY ===
 
 Norges M.E. Forening, Eikveien 96A, 1345 Osteras, tel. & fax: 47-2-
249879
 dues 45 krona
 
 === GERMANY ===
 
 Selbsthilfegruppe CFS-Syndrom - Immundysfunktion, c/o Birke Steinitz
 An St. Swidbert 52, D-40489 Duesseldorf. tel: 49-211-404376
 
 === ITALY ===
 
 C.F.S. Associazione Italia, Segreteria: Via Moimacco 20, 33100, Udine
 
----------------------------
 
Part 6: Important information
 
----------------------------
 
6.01 What else is important for me to know about CFS?
 
Medical research and acceptance of the illness will develop only if our 
national support organizations which promote them are strong. Be sure 
to 
support your national groups by, at the least, contributing annual dues. 
And when your national group calls for letters and phone calls to be 
sent 
to public officials and media, please get your family and friends to 
assist 
you in responding to those requests. We may be able to make greater 
achievements if we act in unison.
 
In the USA, the largest source of research money comes from government 
allocations. Therefore, contacting your Congressman about the 
importance 
of CFS/CFIDS research is very important.
 
----------------------------
 
6.02 What is "May 12 / International Awareness Day"?
 
May 12 has been chosen by many national groups as International 
Awareness 
Day for chronic fatigue syndrome. May 12 is the birthday of Florence 
Nightingale, who had an undiagnosed, debilitating disease for many 
decades. 
Despite her constraints, Nightingale was able to found the International 
Red Cross.
 
The concept of May 12 as International Awareness Day was developed by 
Tom 
Hennessy. He has now founded the RESCIND organization (Repeal Existing 
Stereotypes about Chronic Immunologic and Neurological Disorders) which 
promotes solutions for CFS, fibromyalgia, multiple chemical 
senstivities, 
and Gulf War Syndrome. RESCIND can be contacted at 9812 Falls Road, 
Suite 
114-270, Potomac, MD 20854, USA, fax: (after 6pm ET) 1-301-983-5644, 
Internet: MAY12@American.edu.
 
----------------------------
 
Appendices
 
----------------------------
 
A1. Where to get the current version of this FAQ
 
obtained via Internet e-mail by sending the command GET CFS FAQ as a 
message to LISTSERV%ALBNYDH2@ALBANY.EDU. It can be ftp'd from 
rtfm.mit.edu 
and in future will be stored as filename cfs-faq (it is now stored at 
cfs-general).
 
----------------------------
 
A2. Articles on-line
 
There are a series of medical articles regarding the diagnosis and 
treatment of CFS which are available from the SJUVM Listserv on the 
Internet. Below are shown article titles and authors, with their 
filenames. Instructions on how to retrieve the files are described 
after 
this listing of articles.
 
 FILENAME Title of article
 -------- -------------------------------------------
 
CFSLAPP1 TXT | Chronic fatigue syndrome is a real disease.
 Lapp, CW. North Carolina Family Physician,
 Winter 1992.
 
 
 Contents: The CFIDS Chronicle Physicians Forum / CFIDS: The
 Diagnosis of a Distinct Illness. September 1992.
 
 Section I: Descriptive Articles
CFIDS923 BELL | CFS: Recent Advances in Diagnosis and Treatment.
 Bell DS.
CFIDS923 CALABRE# | Chronic Fatigue Syndrome. Calabrese L, Danoa T,
 Camara E, Wilke W.
CFIDS923 CHENEY# | The Diagnosis of CFS: An Assertive Approach.
 Cheney PR, Lapp CW.
CFIDS923 GOLDSTEI | The Diagnosis of CFS as a Limbic Encephalopathy.
 Goldstein JA.
CFIDS923 HICKIE# | Diagnosing CFS: Principles and Pitfalls for the 
Patient,
 Physician, and Researcher. Hickie I, Wakefield 
D.
CFIDS923 KLIMAS | Diagnosing CFIDS: An Immunologist's Approach.
 Klimas NG.
 
CFIDS923 JONES# | Section II: Clinical Comments;
 by Jones JF, Komaroff AL, Natelson BH, Peterson 
DL.
 
 Section III: Research Articles
CFIDS923 CDC | CFS Research at the Centers for Disease Control.
 CDC CFS Research Group.
CFIDS923 YUNUS | CFS and Fibromyalgia Syndrome: Similarities and
 Differences; Yunus MB
CFIDS923 SANDMAN# | Protocol for Cognitive Assessment of CFIDS.
 Sandman CA, Moore S.
CFIDS923 IGER | The MMPI-2 CFS Profile. Iger LM.
CFIDS923 HERST | 2'-5' Oligo-Adenylate Synthetase and RNase-L:
 Key Enzymes in the Antiviral Defense
 Mechanism. Herst CV.
 
 - - - - - - - - - -
 
The above articles and other files of interest are available from the
SJUVM LISTSERV at St. John's University. To use the SJUVM file server,
send commands (described as follows) by e-mail to 
LISTSERV@SJUVM.STJOHNS.EDU
 
To get a list of current files available, send the command GET CFS-FILE
FILELIST to the LISTSERV address above. To retrieve specific files, 
note
the filenames on the FILELIST and then send the command GET <filename1>
<filename2> to the LISTSERV address (each file has a two-part name).
 
----------------------------
 
A3. Common abbreviations
 
Below are shown common medical abbreviations that CFS people often come 
across. Following these are a list of abbreviations often found in 
computer network discussions.
 
 Medical
 
BEAM - A kind of brain scan
 
CBC - complete blood count
 
CD4, CD8 etc. -- immune cells
 
CDC -- Centers for Disease Control and Prevention (USA agency),
 responsible for estimating prevalence rates and making 
 epidemilogical studies
 
CEBV -- chronic Epstein-Barr syndrome. CFS was once thought to be 
this.
 
CFS -- chronic fatigue syndrome
 
CFIDS -- chronic fatigue and immune dysfunction syndrome, a name for 
CFS
 often used in the USA.
 
CNS -- central nervous system
 
COQ10 -- co-enzyme Q10, a naturally occuring substance which some 
patients
 find helpful; available without prescription
 
DHEA -- dehydroepiandrosterone, a steroid hormone that some patients
 find helpful although this medication has risks
 
DHHS -- Dept. of Helath and Human Services (USA agency)
 
EBV -- Epstein-Barr Virus, the cause of infectious mononucleosis and 
 linked to Burkitt's Lymphoma and nasopharyngeal cancer; for a 
time 
 it was thought that EBV might be the cause of CFS, but later 
 research showed there was no correlation. This latter news is 
 still catching up to people, and some physicians still refer to 
CFS
 as CEBV (i.e, chronic EBV).
 
EI -- See MCS
 
EPD -- enzyme potentiated desensitization; a treatment
 
FDA -- Food and Drug Adminstration; a USA agency which regulates drug 
 approvals, nutritional supplements, and food quality and 
labeling
 
FMS -- fibromyalgia syndrome; quite similar to CFS, many believe it is 
the
 same illness, although CFS researcher Dr. Paul Cheney says that 
FMS
 patients respond well to programs of graduated exercise, while 
CFS
 will suffer a relapse if they follow the same regimen. There's a
 separate network discussion group for this, 




(Continued from last message)
 
GWS -- (a.k.a. PGS) = Gulf War Syndrome -- condition noted by USA and
 other militaty veterans who fought in the 1991 Persian Gulf war.
 This hasn't been studied enough to clarify that it's one 
syndrome.
 Many of the patients, though, exhibit symtpoms indistinguishable
 from MCS, and MCS treatments have been very successful with 
these
 patients (as reported at NIH's workshop on this topic, April 
'94).
 
HHV6 -- human herpes virus 6; might be involved in several conditions,
 including CFS.
 
HPA -- hypothalamic-pituatary-adrenal; this axis controls stress 
response
 and many other bodily functions; damage to this is implicated as
 a cause of CFS.
 
IVIG -- intravenous gamma globulin; a treatment that some find helpful
 
MAOI -- monoamine oxidase inhibitors; a class of drugs that some find
 helpful; several risks
 
MCS -- multiple chemical sensitivities, also known as EI ( = 
environmental 
 illness). Very similar to CFS except that in MCS, chemical & 
fume 
 exposures are a clear trigger that worsen symptoms. Often 
 discussed on the "immune" discussion group (to subscribe, 
contact
 immune-request@weber.ucsd.edu
 
ME -- myalgic encephalomyelitis; the name for CFS used most commonly
 outside of the USA.
 
MRI -- magnetic resonance imaging; a kind of brain scan
 
NIH -- National Institutes of Health (USA agency); largest medical 
 research institution in the world
 
NK -- natural killer cell, a type of immune cell
 
NSAID -- non-steroidal anti-inflammatory drugs; examples: naproxen, 
 ibuprofen; used for pain
 
PCR -- polymerase chain reaction; a DNA technique used for identifying 
 viruses and other life forms
 
PET -- a kind of brain scan
 
PHS -- Public Health Service (USA agency); under the DHHS, the PHS
 includes NIH, CDC, and SSA
 
PNI -- psychoneuroimmunology; new field that studies relations between
 emotions and the immune system
 
PWC -- person with CFS
 
PGS -- Persian Gulf Syndrome; see GWS.
 
PVFS -- post-viral fatigue syndrome; term used in Britain, associated 
with
 CFS/ME
 
SoPWC -- spouse of PWC; significant other of a PWC
 
SPECT -- a kind of brain scan
 
SSA -- Social Security Adminstration (USA agency), responsible for 
 retirement and disability benefits
 
SSDI -- disability benefit program form the SSA (USA)
 
SSRI -- selective serotonin re-uptake inhibitors; examples: Zoloft, 
Paxil,
 Prozac; often used to address fatigue, cognitive dysfunction 
and 
 depression
 
T4, T8 etc. -- kinds of immune cells
 
TCA -- tricyclic anti-depressants; examples: doxepin and amitriptyline; 
 often used for sleep disorder, and muscle and joint pain;
 
 
 Computer Land
 
btw -- by the way
 
FAQ - frequently asked question; or, a document that answers frequently 
 asked questions
 
FTP -- file transfer protocol; a nifty Internet utility for storing/
 retrieving files
 
FWIW -- for whatever it's worth
 
HTTP -- hypertext protocol; a nifty Internet utility which can link
 multiple resources
 
IMHO -- in my humble opinion
 
URL -- universal resource locator; an Internet term that identifies 
 specificl locations for ftp, http, etc. resources
 
w.r.t. -- with respect to
 
:-) -- a "smilie", meaning "meant in jest"; (look at it sideways to see 
 the smilie face)
 
 





 
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