
 
 
Archive-name: medicine/chronic-fatigue-syndrome/cfs-guidelines
 
    Topics, Rules and Information for CFS-L / alt.med.cfs
 
This discussion group on chronic fatigue syndrome is distributed both by
e-mail subscription as the CFS-L list, based at LISTSERV@LIST.NIH.GOV, 
and
as Usenet newsgroup alt.med.cfs.  Please read the following rules and
notices.
 
   TOPICS:
 
Most messages can be appropriately posted to the basic 3 topics of
<none>, MEDical, or RESearch.  The definitions of the designated
topics are as follows:
 
<no keyword>:  This open category is appropriate for almost all postings
               except those dealing with medical issues, research, 
social
               chatter, and other special topics as listed below.  (When
               using Listserv commands, refer to this topic as OTHER.)
 
MEDical:  medical care issues which are likely to have been discussed 
before,
          i.e. treatment and diagnosis questions for individual cases, 
for
          CFS or any related condition (warning: messages on this group 
cannot
          serve as medical advice); how to find a doctor; how to handle 
your
          doctor.
 
RESearch:  scientific discussion and news items about the illness; 
treatment
           and diagnosis issues which pertain to CFS patients as a class 
(i.e.
           not individual cases); news items about new research,
           publications, conferences, media reports.
 
CHAT:  humor, and social discussion about non-CFS issues.
 
ADMIN:  for discussing issues about this group itself; the rules, how 
they
        are applied, possible new topic categories.
 
FAQ:    special notices for "frequently asked questions"; the formal 
notices
        will be posted by the moderator only, but follow-up discussion 
about
        them or how they may be improved may be posted here
 
Please see that your messages contain a designated topic keywords (see
greater participation from the e-mail side of this group.  The keywords
must end with a colon with no intervening blank, e.g. ADMIN: .  Multiple
keywords must not be separated by a blank, e.g. ADMIN,MED: .
 
E-mail subscribers can restrict received messages to only selected 
topics
by sending a command in the form of SET CFS-L TOPICS topic1 topic2 etc. 
as
an e-mail message to the address LISTSERV@LIST.NIH.GOV.  By default, all
new subscribers receive all topics.  To later add additional topics, you
can send a command in the form of SET CFS-L TOPICS +topic1 topic2.  To
delete certain topics, send a command like SET CFS-L TOPICS -topic1 
topic2 .
The open, "no keyword" topic may be refered to as OTHER.  To see your 
current
topics setting, send the command QUERY CFS-L. Digest and Index 
subscribers
receive all messages regardless of topic.
 
An abbreviation unique to the topic keyword vis-a-vis the other keywords
may be used in place of the full keyword, and is encouraged.  Please use
the abbreviations as shown.
 
 ------------------------------------------------------------------------
               CFS Group -- TOPICS Cheat Sheet
           (print out and keep near your keyboard)
 
<none>  all except medical, research, chat and others shown below
MED:    medical care, individual cases
RES:    scientific discussion about the illness, CFS patients as a class
 
CHAT:   humor, social talk
ADMIN:  about the CFS group
FAQ:    special notices on "frequently asked questions"
 
topic keywords always include a colon, never a blank
 
 ------------------------------------------------------------------------
 
 
   RULES:
 
1. On topic:  Messages posted to this group must be limited to the topic 
of
chronic fatigue syndrome.
 
2. No advertisements:  Commercial advertisements are not allowed on this
group.  This rule is in place in part because of group sentiment, but 
also
because this group's messages are distributed through the assistance of 
the
NIH Computing Center, a U.S. government agency, and allowing commercial
advertisements through the group would be an improper use of government
facilities.  Participants may post reviews of consumer products or 
services
in which they have no financial interest.
 
3. No flames.
 
   a. Accent the positive:  When posting messages, please comment on 
ideas
and make positive suggestions.  Please do not personally criticize other
participants.  Also, political discussions should be brief, and for the
most part should be conducted on the CFIDS-L group (see notice B below).
 
   b. Refer flames to the moderator:  If you are personally criticized,
please do not respond directly on the group but instead bring the matter
to the attention of the list-owner privately (i.e., Roger Burns at 
address
CFS-L-REQUEST@LIST.NIH.GOV).  If everyone responds directly to "flames",
then the other person may exercise their right to respond, and soon 
we'll
have a spiraling melee.  Please bring concerns to the moderator.
 
4. Proper subject and topic keywords:  Post your messages to the
appropriate topic keyword, as described in the scheme listed above.  
Also,
when replying to messages please don't automatically use the original
your message contains key ideas that are not captured by the default
Subject.  Pay special attention to insert the proper topic keyword for
your reply and don't automatically use the keyword for the original
message you're replying to.  This will make message-searching more
effective for all.  The special topic keyword ALL: is reserved for use 
by
the moderator only.
 
5. Short quotes:  When replying to messages, please don't quote the 
entire
original message, but only that part of the message you are commenting 
on.
A little bit of cutting will save much reading time for the hundreds of
readers on this group.
 
 
   NOTICES:
 
A. Disclaimer:  Any advice which may be given on this list regarding
diagnoses or treatments, etc., reflects ONLY the opinion of the 
individual
posting the message.  Those who have CFS are urged to consult with a
licensed health care practitioner who is familiar with the illness.
 
B. Posting privileges:  This group is moderated.  Those who would like 
be
able to post messages directly to the newsgroup alt.med.cfs should 
register
for direct posting privileges by doing the following: send the commands
 
   SUB CFS-L YourFirstName YourLastName
   SET CFS-L NOMAIL
 
as an Internet e-mail message to the address LISTSERV@LIST.NIH.GOV.
 
C. Technical advice / message archives:  For advice and information 
about
this group and its message archives, and about other CFS groups and
resources on Internet/Usenet, read the CFS Internet help file.  To 
obtain
the file, send the command GET CFS NET-HELP as an e-mail message to the
Internet address LISTSERV@LIST.NIH.GOV.
 
D. News sources:  Readers of this group are advised to also follow the
CFS-NEWS electronic newsletter and the CFS Newswire service.  These are
described in the CFS NET-HELP file mentioned in notice C above.
 
E. CFS info:  General resources on CFS information are described in the
CFS-RES TXT file.  To obtain it, send the command GET CFS-RES TXT file 
to
the address LISTSERV@LIST.NIH.GOV.  Other detailed files, some of which
contain the text of medical journal articles, are stored at the CFS-FILE
and CFS-D file bases, which are described in the Internet help file
mentioned in notice C above.
 
F. Other networks:  For information about CFS discussion groups and
resources on other networks and on BBSs, read the "CFS/ME Electronic
Resources" guide.  To obtain an electronic copy, send the command GET
CFS-NET TXT as an e-mail message to address LISTSERV@SJUVM.STJOHNS.EDU.
 
For further advice, contact the moderator, Roger Burns at address
CFS-L-REQUEST@LIST.NIH.GOV.
 
 
 
 
 
 
 
 
 
 
 
 


 
 
Archive-name: medicine/chronic-fatigue-syndrome/cfs-index
E-mail: send GET CFS INDEX to LISTSERV@SJUVM.STJOHNS.EDU
 
                         CFS Index to FAQs
 
This document describes the several FAQ files about chronic fatigue
syndrome and explains where to find them.  These FAQs will be posted to
alt.med.cfs and will also be available via Listserv e-mail retrieval and
by ftp.  Details about how to retrieve these documents as files are
described at the end of this document.
 
Some FAQs overlap in their coverage since some of them have been 
developed
separately and independently.  The CFS Resources FAQ will have much of 
its
info repeated in the general CFS FAQ and in the Electronic Resources 
FAQ.
 
 
                         Catalog of CFS FAQs
 
------------------------------
 
ftp archive name: cfs-index
Listserv filename: CFS INDEX (at SJUVM and Albany)
 
   This file.
 
------------------------------
 
ftp archive name: cfs-faq
Listserv filename: CFS FAQ (at SJUVM and Albany)
 
   Answers to typical questions about chronic fatigue
   syndrome.  There is a separate FAQ on CFS treatments.
 
------------------------------
 
ftp archive name: cfs-treatments
Listserv filename: CFS TREATMTS (at SJUVM and Albany)
 
   Treatments for chronic fatigue syndrome.
 
------------------------------
 
ftp archive name: cfs-guidelines
Listserv filename: CFS-L RULES (at NIH)
 
   Rules and technical info about the CFS discussion group, i.e. the
   newsgroup alt.med.cfs and the mailing list CFS-L.
 
------------------------------
 
ftp archive name: cfs-network-help
Listserv filename: CFS NET-HELP (at SJUVM, NIH and Albany)
 
   Where to find discussion groups and info files about CFS available on
   Internet, Usenet and Listserv.
 
------------------------------
 
ftp archive name: cfs-resources
Listserv filename: CFS-RES TXT (at SJUVM, NIH and Albany)
 
   General resource file for CFS.  Lists books, articles, national
   organizations, newsletters, and electronic discussion groups and 
files.
   A large document (60K).
 
------------------------------
 
ftp archive name: cfs-electronic-resources
Listserv filename: CFS-NET TXT (at SJUVM)
 
   Lists all computer network resources for CFS on Internet, commercial
   services, and BBSs.  Includes advice for those new to compter 
networking.
 
------------------------------
 
ftp archive name: cfids-guidelines
Listserv filename: CFIDS-L WELCOME (at American)
 
   Procedures and rules for the CFS political action group, i.e. the
   newsgroup alt.health.cfids-action and the mailing list CFIDS-L.
 
------------------------------
 
ftp archive name: cfs-hello
Listserv filename: CFS SURVEY (at Albany)
 
   Survey for the get-to-know-you "Hello" files for the participants of
   the alt.med.cfs / CFS-L group.
 
------------------------------
 
 
On Usenet these FAQs will be posted to alt.med.cfs, with the Subject
lines as shown in the description above.
 
Via anonymous ftp these files can be found at rtfm.mit.edu in directory
 
The documents can also be obtained by e-mail from various Listservs.  To
do so, create an e-mail message which contains the command the command 
GET
followed by the two-part Listserv filename.  Send to the Listserv
indicated in the description above.  The various Listserv addresses are
shown below.  For example, to get the CFS Network Help file, send the 
command
 
   GET CFS NET-HELP
 
as an e-mail message to the address LISTSERV@SJUVM.STJOHNS.EDU (or to 
any of
the other Listserv that are also listed in that document's description
shown above).
 
Listserv addresses
 
NIH       LISTSERV@LIST.NIH.GOV
SJUVM     LISTSERV@SJUVM.STJOHNS.EDU
Albany    LISTSERV@HEALTH.STATE.NY.US
American  LISTSERV@AMERICAN.EDU
 
 
------------------------------
 
For inquiries about these files, send e-mail to CFS-L-
REQUEST@LIST.NIH.GOV.
To participate in the development of the general and treatments FAQs,
post messages to the FAQ topic of the alt.med.cfs newsgroup or to the
mailing list at CFS-L@LIST.NIH.GOV (which is the same group.)
 
-- Roger Burns   CFS-L-REQUEST@LIST.NIH.GOV
   Moderator, CFS-L / alt.med.cfs
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 


 
 
Archive-name: medicine/chronic-fatigue-syndrome/cfs-network-help
 
                  CFS NET-HELP file  March 25, 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. Gopher, web, ftp, and telnet
 
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@HEALTH.STATE.NY.US .  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.
            (NIHLIST)           Gatewayed to newsgroups alt.med.cfs.
 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.
            (AUVM)              Gatewayed to alt.health.cfids-action.
 CFS-FILE @ SJUVM.STJOHNS.EDU   Notices of additions and changes to CFS 
file
            (SJUVM)             base at SJUVM
 CFS-D    @ HEALTH.STATE.NY.US  Notices of additions and changes to CFS 
file
            (ALBNYDH2)          base at Albany, New York
 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
            (UIUCVMD)           Gatewayed to alt.med.fibromyalgia.
 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 HEALTH.STATE.NY.US       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
    ----------
 
 alt.med.cfs                     patient discussion, linked to CFS-L
 alt.med.fibromyalgia            patient discussion, linked to FIBROM-L
 bit.listserv.cfs.newsletter     CFS-NEWS electronic newsletter
 sci.med.immunology              gen'l discussion on immunology
 misc.health.alternative         alternative health
 alt.health.cfids-action         political action issues for CFS
 news.announce.newusers          info for those new to USENET
 news.newsusers.questions        Q&A about USENET
 
Discussions on other health issues can be found in the hierarchies of
sci.med, misc.health, and alt.support.  Discussions for biologists can 
be
found in the bionet hierarchy.  In early 1995 there will be a proposal 
to
shift the alt.med.cfs group to the misc.health hierarchy, and also to
create a separate misc.health group for a combined distribution of the
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@HEALTH.STATE.NY.US (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
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@HEALTH.STATE.NY.US.  The current edition can
be obtained by the following means:
 
 ftp:  ftp.sura.net, directory /pub/nic/HealthResources
       with filenames in the form of medical.resources.xx-xx
 
 gopher:  ukanaix.cc.ukans.edu, login kufacts
          choose Departmental Information and then Medical Center 
Resources
 
 web:  http://kuhttp.cc.ukans.edu/cwis/units/medcntr/menu.html
 
There is also a medical resources document developed by Dr. Gary Malet
with Lee Hancock. and it is available as a web page at
 
   http://kuhttp.cc.ukans.edu/cwis/units/medcntr/Lee/HOMEPAGE.HTML
 
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. Gopher, web, ftp, and telnet  =
 =====================================
 
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 holds the CFS-FILE file base, and archives of the
CFS-WIRE (Newswire) service, and Catharsis magazine.  You can gopher to
sjuvm.stjohns.edu and at the main menu, choose Disabilities, and then
Chronic Fatigue Syndrome.
 
  _________________________________________________________
    www
 
World Wide Web, or "www", is a facility which links many different
Internet resources together on a related topic.  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".
 
The following web sites focus on CFS/ME information:
 
   http://huizen.dds.nl/~cfs-news
 
   http://www.ncf.carleton.ca/ip/social.services/cfseir/CFSEIR.HP.html
 
   http://www.astro.uva.nl/fluks/me.html
 
  _________________________________________________________
    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.
 
Political action/advocacy files that are associated with the discussion
group CFIDS-L / alt.health.cfids-action are available via ftp from
listserv.american.edu, directory CFIDS.
 
  _________________________________________________________
    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.
 
 
 
-- end of document -------------------------------------------------
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 


 
 
Archive-name: medicine/chronic-fatigue-syndrome/cfs-treatments
E-mail: send GET CFS TREATMTS to LISTSERV@SJUVM.STJOHNS.EDU
 
                           CFS Treatments
 
This is a tentative FAQ for CFS treatments.  A fuller document is being
developed.
 
   Treatments for CFS can be found in the following books:
 
"The Doctor's Guide to Chronic Fatigue Syndrome" by David S. Bell, MD.
Addison-Wesley Publishing Company.
 
"Living With M.E.: the Chronic/Post-Viral Fatigue Syndrome", new
edition for 1992, by Dr. Charles Shepherd, MD.
 
"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.
 
 
           References for diagnosis and treatment of CFS
 
   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, "Living With M.E.", Dr. Charles Shepherd, M.D., revised 1993.  
$15.00
 
 -------------------------------------------------------------------
 
There are a series of medical articles regarding the diagnosis of CFS 
which
are available on the SJUVM File Server.  Article titles and authors, 
with
their filenames, are listed below, followed by instructions on how to
retrieve the files.
 
 
 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).
 
If you have any difficulties with these procedures, please contact the
moderator at CFS-L-REQUEST@LIST.NIH.GOV.
 
In addition to the articles listed above, there are other files of
interest at a different Listserv.  (In the future, all of these should 
be
consolidated at the SJUVM Listserv.  "Chronic Fatigue Syndrome:  A
Pamphlet for Physicians" published by NIH in May 1992, is filename CFS
NIH-DOC ; and also the CFS working case definition by Holmes, et al.
published in Annals of Internal Medicine, March 1988, is filename CFS-
ART
CDC-DEFN .  Send GET <filename1> <filename2> to the address
LISTSERV%ALBNYDH2@ALBANY.EDU . Also, those who may want to get more
familiar with LISTSERV and networking may want to retrieve the file 
named
CFS NET-HELP (available at either Listserv).
 
Thanks to the CFIDS Association and to Molly Holzschlag
for making these materials available in electronic form.
 
 
Roger Burns      CFS-L-REQUEST@LIST.NIH.GOV
Moderator, CFS-L / alt.med.cfs
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 


bedfellow.mit.edu
faqserv
faq_796674458@rtfm.mit.edu>
faq_799277603@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
E-mail: send GET CFS FAQ to LISTSERV@SJUVM.STJOHNS.EDU

In the future we may split this document into several parts, but for
now this document is quite long (nearly 1500 lines) and you may wish
to save it as a file 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
   
   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?
   2.021 CFS definition
   2.022 Clinical views
   2.03 What are the specific treatments available for CFS?
   2.031 Avoid stress
   2.032 Medications
   2.033 Role of exercise
   2.034 Dietary changes
   2.035 Secondary problems
   2.036 Article references
   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,
        neurally mediated hypotension, Lyme disease, candida, etc.)?
   2.17 How does CFS relate specifically to fibromyalgia?
   2.18 How does CFS relate to neurally mediated hypotension?
   
   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 newsletters 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
   A4. Further information
   A5. Changes to this edition
   A6. Development of this FAQ
   A7. Credits

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


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


The CFS FAQ is copyright (c) 1995 by Roger Burns on behalf of the CFS 
Internet
Group.  Permission is granted to redistribute or quote this document for
non-commercial purposes provided that you include an attribution to the 
CFS
Internet 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).

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


This document answers frequently asked questions (f.a.q.) about chronic
fatigue syndrome (CFS).

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


The information presented in this document was written and developed by
patients.  It represents an informal catalog of accumulated knowledge by
people who for the most part are not medical professionals.  As this 
file is
developed further, we hope to include references and citations which 
will
document the statements that are made here.  In any case, as useful as 
this
information may be it must not be considered to be medical advice, and 
must
not be used as a substitute for medical advice.  It is important that 
anyone
who has, or thinks they may have, CFS should consult with a licensed 
health
care practitioner who is familiar with the syndrome.

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


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


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, mental 
fogginess,
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 
unusually
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.

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


The cause of the illness is not yet known.  Current theories are looking 
at
the possibilities of neuroendocrine dysfunction, viruses, environmental
toxins, genetic predisposition, 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 stressors, 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 viral 
infection,
or a head injury, or surgery, excessive use of antibiotics, or some 
other
traumatic event.  Yet it's unlikely that these events on their own could 
be a
primary cause.

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


At this early point, many practicing clinicians 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 disease.

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 (Jan 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]

Schwartz R, Komaroff A, Garada B, Gleit M, Doolittle T, Bates D, Vasile 
R,
Holman B.  "SPECT Imaging of the Brain: Comparison of Findings in 
Patients
with Chronic Fatigue Syndrome, AIDS Dementia Complex, and Major Unipolar
Depression"  AJR 1994:162:943-951.

Schwartz R, Garada B, Komaroff A, Tice H, Gleit M, Jolesz F, Holman B.
"Detection of Intercranial Abnormalities in Patients with Chronic 
Fatigue
Syndrome: Comparison of MR Imaging and SPECT"  AJR 1994:162:935-941.

Rowe, P; Bou-Holaigah, I; Kan, J; Calkins, H;. "Is Neurally Mediated
Hypotension an Unrecognized Cause of Chronic Fatigue?". Lancet 345:623-
624
(March 11, 1995).

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


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.

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


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
reinforces 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.  (Florence Nightingale had an undiagnosed, 
debilitating
disease for many decades.  See also question 6.02.)

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

Part 2:  Medical issues

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


It is very important to find a health practitioner who is familiar with 
this
illness.  The symptoms of CFS can be mimicked by other illnesses 
(autoimmune
illnesses, cancer, hepatitis, diabetes, etc.), 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.)  Read the essay 
on
"Dealing with Doctors When You Have CFS" by Camilla Cracchiolo, R.N. 
which can
be obtained by sending the command GET CFS HANDLEDR as an e-mail message 
to
the address LISTSERV@SJUVM.STJOHNS.EDU.

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


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


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;

    - 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.

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


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.

Drs. Buchwald and Komaroff did a study which surveyed the most common 
symptoms
found in those meeting the 1988 CDC criteria.  [Komaroff AL, Buchwald D.
Symptoms and signs of chronic fatigue syndrome.  Rev Infect Dis 
1991;13(Suppl
1):S8-11.]  They found the following frequencies:

Symptom/sign                     Frequency (%)

fatigue                              100
low-grade fever                    60 - 95
myalgias                           20 - 95
sleep disorder                     15 - 90
impaired cognition                 50 - 85
depression                         70 - 85
headache                           35 - 85
pharyngitis                        50 - 75
anxiety                            50 - 70
muscle weakness                    40 - 70
Postexertional malaise             50 - 60
worsening of premenstrual          50 - 60
  symptoms
stiffness                          50 - 60
visual blurring                    50 - 60
nocturia                           50 - 60
nausea                             50 - 60
dizziness                          30 - 50
arthralgias                        40 - 50
tachychardia                       40 - 50
dry eyes                           30 - 40
dry mouth                          30 - 40
diarrhea                           30 - 40
anorexia                           30 - 40
cough                              30 - 40
digital swelling                   30 - 40
night sweats                       30 - 40
painful lymph nodes                30 - 40
rash                               30 - 40

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


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.

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


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.  Stress 
does
not merely mean unpleasant experiences, but rather any biological 
stressors,
physical or emotional, which prompt a protective reaction in the body 
and
which may alter physiologic equilibrium ("homeostasis").  (Read the 
discussion
about stress under question 2.04.)  Failure to avoid stress often leads 
to
short-term and long-term set-backs which may 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 appears to 
be
strong.

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


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, intra-muscular gamma 
globulin
(IMgG), nutritional supplements (particularly anti-oxidants, B-vitamins
generally and B-12 specifically), herbs, and acupuncture.  Less often
prescribed were chiropractic therapy, intra-muscular gamma globulin 
(IVgG),
kutapressin, antivirals, interferon, and transfer factor.

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


CFS 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.  But this should be done with great care, since crossing the
"invisible line" of exercise intolerance for this illness may prompt a 
serious
relapse, and may negatively affect the longer-term future course of the
illness.

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


CFS patients appear to be alcohol intolerant.  Other food products often
recommended against include caffeine, 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.

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


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.

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


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 1992.  
$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.

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


Preliminary research suggests that CFS may involve a brain disorder --
specifically, HPA dysfunction (see question 2.16) -- which affects the 
stress
response system in our bodies.  CFS patients are standardly observed to 
be
hypersensitive to stress.  Stress does not merely mean unpleasant 
experiences,
but rather any biological stressors, physical or emotional, which prompt 
a
protective reaction in the body and which may alter the physiologic
equilibrium known as "homeostasis".  Stress in this physiological sense 
may be
subtle and may not necessarily be noticed.  Merely hearing loud sounds 
or
seeing bright lights may be stressful in this context.

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
illness 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.

HPA and neurotransmitter dysfunction may make CFS patients excessively
irritable, and may prompt panic attacks.  These behaviors might be
misinterpreted, thereby reinforcing a misconception that CFS is merely a
psychological condition.

See also question 2.11 which discusses depression, and the questions 
under
Part 3 of this document, "Life problems created by CFS".

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


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-pituitary-adrenal axis as 
being a
possible major explanation for CFS.  Dr. Peter Rowe (Johns Hopkins) is
studying the possible link between CFS and neurally mediated 
hypotension.  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 just a few of the more prominent studies 
now
on-going.

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


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.

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


The illness varies greatly in its duration.  A few recover after a year 
or
two.  More often, those who recover are more likely to do so from 3 to 6 
years
after onset.  Others may recover after a decade or more.  Yet for some, 
the
illness seems to simply persist.

CFS often occurs in cycles.  It can be frustrating to obtain some 
relief, but
then not know whether you have recovered or if you are merely between 
cycles.

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


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.

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


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 illness seems to argue against genetics as being the sole 
factor.

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


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?

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


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 CFS patients whereas in depressed people 
they
are high, indicates that CFS is not depression.  Other noted differences 
are
that CFS patients tend to overestimate their abilities, retain a strong
interest in life, and respond poorly to exercise, whereas the opposite 
are
typically observed in people who are depressed.

A politico-economic aspect of this issue is that health insurers have an
incentive to classify patients as having temporary illnesses that can be
treated cheaply and in a short time.  Depression is considered to be a
short-term, treatable illness.

Another issue is that CFS patients can get "secondary depression" if 
their
lives have been disrupted because their illness has interfered with 
their job
or their social or family life.  This indirect consequence of the 
illness may
be taken by some medical professionals as indicating a cause rather than 
an
effect of the observed symptoms.

See also question 2.04 above, regarding stress and psychology.  Also, 
the
differences between CFS and other conditions, including depression, is
discussed in the Calabrese article -- see Appendix 2.

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


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.

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


There have been no formal studies about this question to date.  
Clinicians
dealing with the illness have not noticed any higher incidence of cancer 
among
their CFS patients.  The issue is raised, however, because some research 
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.

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


One of the special aspects of CFS in children is that their self-image 
and
their 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.

An information packet named "CFIDS In Children" is available for $5.50 
from


                                                                                                                               

the CFIDS Association (see address under question 5.06).

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


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.

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

                fibromyalgia, multiple chemical sensitivities, Gulf War
                syndrome, neurally mediated hypotension, 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.  Some research 
has
suggested that dysfunction of the hypothalamic-pituitary-adrenal (HPA) 
axis
may be implicated in several or all of these conditions.  This axis 
controls
stress response and many other bodily functions.  If HPA dysfunction is 
truly
involved in many of these conditions, it would be little surprise since 
the
neuroendocrine mechanisms of the HPA axis are both complex and delicate, 
and
thus minor variations in such a dysfunction might well produce the 
variants we
are seeing in these similar illnesses.

The similarities and differences between CFS and other conditions are
discussed in the article by Calabrese et al. -- see Appendix 2.

There are many network resources available that provide discussion and
information about these related conditions.  See the CFS Network Help 
file,
described under question 5.04.

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


Many people believe these may be the same illness, as discussed in the
previous question above.  However, CFS researcher Dr. Paul Cheney notes 
that
CFS patients have a strong intolerance for exercise, while for 
fibromyalgia
patients, exercise is recommended as being therapeutic.  An article by
Dr. Muhammed Yunus discusses a comparison between these two conditions --
see Appendix 2.

There is a patients discussion group for fibromyalgia on Internet and 
Usenet,
and there are information files available.  The discussion group is 
available
on Usenet as newsgroup alt.med.fibromyalgia.  It can be followed as a 
mailing
list by sending the command SUB FIBROM-L YourFirstName YourLastName as 
an
e-mail message to the address LISTSERV@VMD.CSO.UIUC.EDU.  There is a
fibromyalgia patients' FAQ and a doctors' FAQ available by e-mail,
as well as a help file on handling fibromyalgia pain.  To obtain them, 
send
the commands

   GET FIBROM-L PT-FAQ
   GET FIBROM-L MD-FAQ
   GET FM-PAIN HANDOUT

as an e-mail message to the address LISTSERV@VMD.CSO.UIUC.EDU.

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


This is a new area of study.  Researchers at Johns Hopkins University 
have
discovered what appears to be a link between CFS and a well established
cardiac condition called neurally mediated hypotension.  The fact that 
this
known cardiac condition has diagnostic tests and treatments that are
already accepted by medical science has important implications for CFS
research and medical care.  The journal citation for this study is 
listed at
the end of question 1.03 above.  To obtain a special edition of the CFS-
NEWS
electronic newsletter which describes this research, send the command 
GET
CFS-NEWS 045 as an e-mail message to the address 
LISTSERV%ALBNYDH2@ALBANY.EDU.

Neurally mediated hypotension, which is also known a vasodepressor 
syncope,
involves mis-regulated blood flow and blood pressure which can lead to
recurrent fainting.  The Hopkins study seems to indicate that many more 
people
who do not have recurrent fainting may nonetheless have this condition, 
*and*
many in this wider group have chronic fatigue generally and CFS in 
particular.

The patients in the Hopkins study who have gotten benefit from the 
treatment
have been enthusiastic about the results, although the Hopkins 
researchers
themselves are much more conservative in their claims at this early 
point in
their research. Although the results from this treatment are very 
encouraging,
not all patients in the study respond positively to the therapy.

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


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


- 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 accommodated 
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 traveled 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

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


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.

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


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


 - If your work is, or will likely be, affected by your illness, educate 
your
boss about your condition.  Do this soon.  You may need their support 
later
when more problems may arise, and it will be easier to educate them 
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 spiraling 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.

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


This section will describe some resources for USA disability benefits.
Contact the national organizations under question 5.06 for other 
countries.

Some on-line files have some helpful information.  At the SJUVM Listserv 
you
can get filename CFIDS941 RYAN.  At the Albany Listserv get the files 
named
CFS SOCSEC1, CFS SOCSEC2, CFS SS-PROC and CFS SS-BOOK.  See Appendix 2 
below
for instructions on how to obtain these files via e-mail.

A "Disability Packet" is available for $5.00 from the CFIDS Association 
(see
question 5.06 for the address).  They also offer the "Disability 
Workbook for
Social Security Applicants" by Douglas Smith, Atty. for $15.00.

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


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


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 
this
subject on the alt.med.cfs newsgroup, or alternatively send the command 
GET
CFS INDEX as an e-mail message to the address 
LISTSERV@SJUVM.STJOHNS.EDU.

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


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 
CFIDS
Assoc.  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.

"Running On Empty: Chronic Fatigue Immune Dysfunction Syndrome"
by Katrina Berne, Ph.D.; 1992; 320 pages; $14 from the CFIDS Assoc.

"Chronic Fatigue Syndromes: The Limbic Hypothesis" by Dr. Jay Goldstein, 
M.D.
259 pages. 27 color plates. $49.00.  Available from the CFIDS Assoc.

[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.

"Solving the Puzzle of Chronic Fatigue Syndrome" by Michael Rosenbaum, 
M.D.
and Murray Susser, M.D.  Life Sciences Press, P.O. Box 1174, Tacoma, WA 
98401,
USA.

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



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 
Assoc., 808
Main St., Waltham, MA 02154, USA. $20/year.

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


There is a patients discussion group, available at CFS-L@LIST.NIH.GOV or 
as
newsgroup alt.med.cfs.  There is also the CFS-NEWS electronic 
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
posted regularly to the alt.med.cfs newsgroup.  It is also available via
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.

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

                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
alt.med.cfs with the subject "FAQ: CFS Electronic Resources".  To get a 
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.

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


       === 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 Academy 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 ===

ME Fonds c/o Hanneke Los, Pres. Kennedylaan 745, 1079 MR Amsterdam
 Tel: 31 020 6445566  Fax: 31 020 6445440  Email: mef@xs4all.nl

       === 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

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


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


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.

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


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 
sensitivities, 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.

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


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


Usenet:  posted regularly to newsgroup alt.med.cfs, with subject FAQ: 
CFS FAQ
E-mail:  send the command GET CFS FAQ as a message to
         LISTSERV@SJUVM.STJOHNS.EDU.  You can get automatic updates of 
this
         FAQ by sending the commmand AFD ADD CFS FAQ CFS-FILE as an e-
mail
         message to LISTSERV@SJUVM.STJOHNS.EDU.
ftp:     rtfm.mit.edu at directory and filename
faq
gopher:  sjuvm.stjohns.edu, CFS menu, CFS-FILE, filename CFS FAQ
WWW:     http://huizen.dds.nl/~cfs-news/faq.html

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


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
 to the LISTSERV address (each file has a two-part name).

There are other Listservs which also have files of interest.  Send the 
command
GET CFS-D FILELIST to the address LISTSERV%ALBNYDH2@ALBANY.EDU to obtain 
a
list of files available at that facility.  For information on 
fibromyalgia,
send GET FIBROM-L FILELIST to LISTSERV@VMD.CSO.UIUC.EDU.

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


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 abbreviations

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,
       FIBROM-L@VMD.CSO.UIUC.EDU or newsgroup alt.med.fibromyalgia.

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.

HMO  -- health maintenance organization (USA); a pre-paid plan which
        provides comprehensive medical services

HPA  -- hypothalamic-pituitary-adrenal; this axis controls stress 
response
        and many other bodily functions; damage to this has been 
implicated
        as a possible 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 abbreviations

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

LOL  -- lots of laughter

ROTFL  -- roll-on-the-floor laughing

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)

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


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@SJUVM.STJOHNS.EDU.

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


Text changes occurred in sections 2.022, 2.16, 2.17, 2.18 and Appendices 
1 and
7.  This document is now available as a web page at

                      http://huizen.dds.nl/~cfs-news/faq.html

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


This is a document whose development is in progress.  It is being 
developed by
the CFS Internet Group (that is, the participants of the Internet 
mailing list
CFS-L and the Usenet newsgroup alt.med.cfs).  For further 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 alt.med.cfs
newsgroup (see question 5.04).

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


The initial draft was written by Roger Burns.  Some phrases were 
borrowed from
"A Guide to CFIDS" by the CFIDS Association.  Contributors include 
Darryl
Anderson, Sara Brenner, Susan Chapin, Camilla Cracchiolo, Jim Dalton, 
Nancy
Evans, Elizabeth Heyman, Jan Horton, Ruth Hyman, Marjorie Panditji, 
Dorothy
Roberts, Sandy Shaw, Al Shinn and Malcolm Watts.  All errors belong to 
the
editor, Roger Burns -- but read the disclaimer in subject 0.02 above.






                                                                                                                             
