action discussion group for those who are ill with CFS/CFIDS/M.E. (chronic fatigue syndrome). Archive-name: medicine/chronic-fatigue-syndrome/cfids-guidelines for political action issues regarding CFS/CFIDS/ME. Those who are looking a patients' discussion of health and other issues should join the CFS-L list based at LISTSERV@LIST.NIH.GOV, or its mirror Those who don't wish to follow this discussion regularly may at the least find it beneficial to subscribe to this group's ALERT file which will be updated from time to time. (Yes, it's possible to subscribe to a FILE!) See the description of how to do this below, under point (2). ACCESS TO THE GROUP technical moderation arrangement for this group, those who would like to be able to post directly to the newsgroup can do so by registering at the Listserv which hosts the Internet half of this discussion. Specifically, send the commands SUB CFIDS-L YourFirstName YourLastName SET CFIDS-L NOMAIL as an e-mail message to the address LISTSERV@AMERICAN.EDU. CFIDS, or CFS, is an illness characterized by debilitating fatigue and a variety of flu-like symptoms. The condition is known as chronic fatigue syndrome (CFS), chronic fatigue immune deficiency syndrome (CFIDS), myalgic encephalomyelitis (ME) and by other names, and in the past has been known as chronic Epstein-Barr virus (CEBV). Other lists of particular interest to readers of this discussion are described at the end of this message. GUIDELINES FOR DISCUSSION (A) Our actions will be greatly strengthened if we act in unison; let's try to create a consensus to take advantage of our strength of numbers. (B) However, it's wise to recognize that individuals don't readily form a consensus. So let's respect each others opinions and recognize that in many cases we will need to "agree to disagree". (C) At the least, let's try to make sure that we don't recommend plans of action whose timing conflicts with each other. For example, if there's an announced program by some advocates to encourage PWCs to press for research funding in September and you wish to launch a campaign about disability benefits, it may be better for you to pick a different target month for your campaign so that both efforts will be maximized. Please note the following about CFIDS-L: (1) Please comment on ideas and make positive suggestions. Please do not personally criticize other participants. If you are personally criticized, please do not respond directly on the list but instead bring it to the attention of the list-owner privately (i.e., Roger Burns at address CFIDS-L-REQUEST@AMERICAN.EDU). (2) There are information files available for our use here at the AMERICAN Listserv. To get a description of them, send the command GET CFIDS-L README to the address LISTSERV@AMERICAN.EDU. There are lists of names and addresses to write to for lobbying, files that contain sample letters, and "ISSUE" files that outline various current issues. FURTHER INFORMATION / TECHNICAL ISSUES It is recommended that everyone subscribe to the Automatic File Distribution (AFD) service for the CFIDS-L ALERT file at this Listserv. (You can sign up for AFD service for any public file on any Listserv). This service send you a new file every time the file's contents may be updated. To sign up, send the command AFD ADD CFIDS-L ALERT to the Listserv address. You might wish to also sign up for CFIDS-L ISSUES. Another option is the FUI service, i.e. File Update Information, which merely sends a brief message saying that the file in question has been revised (so you may choose to take the 2nd step of GETting the updated file). To do so, in this example, send FUI ADD CFIDS-L ALERT to Listserv. If you do use either AFD or FUI it is advisable to set and use a Listserv password for yourself, which will prevent hackers from signing you up to several files that you don;t wish sent to you. To set a password send PW ADD to Listserv (and WRITE DOWN your password!). Thereafter, whenever using the AFD or FUI commands, add PW= to the end of the full command, e.g. AFD ADD CFIDS-L ALERT PW=PASSWORD . (3) Weekly logs of this (CFIDS-L) list's previous messages can be obtained by sending the command GET CFIDS-L LOG* (where * is a particular week, e.g., LOG9404A is the log for 1992, April, 1st week) as the text of a message to the Internet address LISTSERV@AMERICAN.EDU. Sending the command INDEX CFIDS-L to the LISTSERV will get a listing of all the filenames available for retrieval. Note that these message archives are temporary and that the Listserv policy is to delete them after about six months. Other CFS-oriented lists of interest To participate in a list you must know the list-name and the nodename of the Listserv where the list is based. Please note in general that to subscribe to a list, you must send commands by e-mail to the Listserv address which sponsors the list. However, to post messages to the list on a day-to-day basis for all to see, you must send your message to the LIST-NAME address. General example: To subscribe, send the command SUB YourFirstName YourLastName to the address LISTSERV@ but post messages for the list to @ Specific example: for = CFS-L and = LIST.NIH.GOV and user name = Sally Forth To subscribe, send the command SUB CFS-L Sally Forth to the address LISTSERV@LIST.NIH.GOV but post message to the address CFS-L@LIST.NIH.GOV ================== = SPECIFIC LISTS = ================== (1) listname: CFS-NEWS nodename: LIST.NIH.GOV (or on BITNET, NIHLIST) The CFS-NEWS Electronic Newsletter is issued between 1 and 4 times each month and focuses on medical issues. The newsletter is also available through the Fidonet CFS echo, available on many BBSs, and is transmitted through the USENET newsgroup bit.listserv.cfs.newsletter. Back issues can be obtained by sending the commands INDEX CFS-NEWS and GET CFS-NEWS LOG* to the LISTSERV address. The * in LOG* is a numerical representation of the year and month, e.g. to get the 1992 August log you should send the command GET CFS-NEWS LOG9208 to the Listserv address. (2) listname: CFS-L nodename: LIST.NIH.GOV (or on BITNET, NIHLIST) Patient discussion of health and other issues. Same as newsgroup (3) listname: CFS-WIRE nodename: SJUVM.STJOHNS.EDU (or on BITNET, SJUVM) News article exchange for editors of patient organization newsletters. Subscription open to all. (4) listname: CFS-MED nodename: LIST.NIH.GOV (or on BITNET, NIHLIST) Physician discussion of CFS. (5) listname: CFIDS-L nodename: AMERICAN.EDU Political action discussion for CFS/CFIDS/M.E. (7) listname: CATHAR-M nodename: SJUVM.STJOHNS.EDU (or on BITNET, SJUVM) Monthly magazine of personal health, intellect and creativity for the CFS/CFIDS/ME community. (8) listname: CFS-FILE nodename: SJUVM.STJOHNS.EDU (or on BITNET, SJUVM) File database containg many medical articles, newsletters, etc. Send the command GET CFS-FILE FILELIST to see all available filenames, then send GET to retrieve a specific file. (9) listname: CFS-D nodename: LISTSERV%ALBNYDH2@ALBANY.EDU (or on BITNET, ALBNYDH2) Similar to CFS-FILE described above. Contains some older articles, and special files used by the CFS-L discussion group. Roger Burns CFIDS-L-REQUEST@AMERICAN.EDU / fidonet 1:109/432 beacon.mit.edu resources about chronic fatigue syndrome which are available via Internet, Usenet and Listserv. Archive-name: medicine/chronic-fatigue-syndrome/cfs-network-help CFS NET-HELP file February 18, 1995 compiled by Roger Burns ================== = Introduction = ================== This file was written for CFS networkers to be a help reference about LISTSERV and Internet. For the most basic help about LISTSERV, it may only be necessary to read the first section. The sections below are as follows: - A. Common LISTSERV commands - B. Lists of interest, and nodename aliases - C. SEARCHing and selecting old messages - D. USENET newsgroups - E. CFS information on file: the Albany & SJUVM File Servers - F. Further information about health resources and LISTSERV - G. Full service Internet facilities: gopher, ftp, telnet and www For a fuller presentation of CFS-oriented electronic resources, get and read the CFS Resource File "CFS-RES TXT" available from the file servers as described below. ================================= = A. Common LISTSERV commands = ================================= LISTSERV is an automated procedure that does administrative work to maintain lists. It relieves the list-owner from a great many time- consuming chores. Messages to be posted to a list for all to read should be sent directly to the list address, e.g., CFS-L@LIST.NIH.GOV however, requests for administrative changes to your list subscription, or to retrieve files of archived messages, etc., must be sent to the LISTSERV address (which in this example would be LISTSERV@LIST.NIH.GOV) in the form of commands that LISTSERV understands. Sometimes people will accidentally send a LISTSERV command to a list address where it is distributed to all subscribers; the person will then often get complaints from subscribers about how too many accidental and unnecessary messages are clogging up the network. So, address your mail to LISTSERV carefully! Messages that are replies *and* which quote an earlier message including the original mail headers will usually be rejected by Listserv if they posting to. To ensure that your message gets posted, be sure to delete In this guide, commands that LISTSERV will accept are initially shown with the minimum acceptable abbreviation in capital letters. _____________________________________________ ** LIST commands: SUBscribe, QUERY or SET options To subscribe to a list, e-mail a command in the following format to LISTSERV: SUBscribe Example: SUB CFS-L John Doze You may later unsubscribe by sending the command: UNSUB The QUERY and SET commands are useful for viewing and setting your list options. Send QUERY 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 : SET 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 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 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 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 LOG<2-digit-year><2-digit-month>. For example, the January 1993 archive for CFS-L would have the file-name CFS-L LOG9301 . Some lists, however, are grouped by week or by message; some may not have standard filenames in any case. To be certain, you can use the INDEX command described above to see what the bona fide filenames are. CFS information files are available from the St. John's Listserv at LISTSERV@SJUVM.STJOHNS.EDU and from the Albany Listserv at LISTSERV@ALBNYDH2.BITNET . For a discussion of those files and some advanced LISTSERV file commands, see section "D." below. ___________________________________________________________ ** Other helpful commands The command Lists will show a description of all lists based at that LISTSERV. The command Lists Global will generate a listing of all LISTSERV lists everywhere! Be careful -- the file is over 3500 lines long! To get only a selection of listnames where the name or description contains the characters "xyz", send the command Lists Global /xyz . The command SHOW ALIAS will show the Internet alternative name for a nodename on BITNET. This may be useful if you need an alternative means to reach a LISTSERV address. See the section below on "BITNET and Internet nodename aliases". The command THANKs will generate a message which says "YOU're welcome!". This may be used to check whether all the network connections are in place between you and the LISTSERV and to be sure that the LISTSERV is up and operating. =============================================== = B. Lists of interest, and nodename aliases = =============================================== Note the following network lists that may be of interest. In each case, the Internet node where the sponsoring Listserv is located is shown, and underneath in parentheses the BITNET nodename is shown. (Always send subscription commands to the LISTSERV address. Study Section A above carefully before using the addresses below.) CFS-L @ LIST.NIH.GOV Chronic Fatigue Syndrome general discussion. CFS-NEWS @ LIST.NIH.GOV CFS Electronic Newsletter. (NIHLIST) Gatewayed to bit.listserv.cfs.newsletter. CATHAR-M @ SJUVM.STJOHNS.EDU Catharsis magazine of personal health, (SJUVM) intellect and creativity for the CFS community CFS-WIRE @ SJUVM.STJOHNS.EDU CFS Newswire service to exchange news articles (SJUVM) between CFS support group newsletters CFIDS-L @ AMERICAN.EDU CFS/CFIDS/ME political action discussion. CFS-FILE @ SJUVM.STJOHNS.EDU Notices of additions and changes to CFS file (SJUVM) base at SJUVM CFS-D%ALBNYDH2@ALBANY.EDU Notices of additions and changes to CFS file (ALBNYDH2) base at ALBNYDH2 (the Internet address of the Listserv is Listserv%albnydh2@albany.edu) CFS-MED @ LIST.NIH.GOV Chronic Fatigue Syndrome medical discussion (NIHLIST) immune (not on LISTSERV) Immune system discussion. To subscribe, send a message to immune- request@weber.ucsd.edu. To post messages send to immune@weber.ucsd.edu FIBROM-L @ VMD.CSO.UIUC.EDU Fibromyalgia / Fibrositis discussion Gulf War Syndrome News on Gulf War syndrome. To join, send a request to GWVM@delphi.com. Toxicology Update Newsletter of interest to those with multiple chemical sensitivities (a.k.a. environmental illness). To subscribe send the command SUBSCRIBE TOXUPS YourFirstName YourLastName to samcfadd@access.digex.net. WITSENDO @ DARTCMS1.DARTMOUTH.EDU Endometriosis discussion (DARTCMS1) EPD @ white.cis.pitt.edu Enzyme Potentiated Desensitization treatment discussion. (Send SUBSCRIBE in the line to epd@white.cis.pitt.edu.) LymeNet-L Lyme Disease electronic newsletter available through a non-standard listserv; send the command Subscribe Lymenet-l 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 to any LISTSERV. Below are shown aliases for some BITNET nodes. Since the BITNET node for SIUCVMB has no Internet alias, the .BITNET suffix is shown in the list below. Bitnet Internet Bitnet Internet ALBNYDH2 ALBNYDH2.BITNET NIHLIST LIST.NIH.GOV AUVM AMERICAN.EDU SIUCVMB SIUCVMB.SIU.EDU BITNIC BITNIC.CREN.NET SJUVM SJUVM.STJOHNS.EDU DARTCMS1 DARTCMS1.DARTMOUTH.EDU TEMPLEVM VM.TEMPLE.EDU DEARN VM.GMD.DE TREARN VM3090.EGE.EDU.TR HEARN NIC.SURFNET.NL UBVM UBVM.CC.BUFFALO.EDU INDYCMS INDYCMS.IUPUI.EDU UIUCVMD VMD.CSO.UIUC.EDU IRLEARN IRLEARN.UCD.IE UKACRL IB.RL.AC.UK NDSUVM1 VM1.NODAK.EDU VTVM1 VTVM1.CC.VT.EDU ============================================= = C. SEARCHing and selecting old messages = ============================================= You can have LISTSERV send you only selected messages of your choosing without having to retrieve whole files of monthly logs. All LISTSERV lists that have archived messages can have those messages searched and selected by using database commands. These commands must be submitted as a "batch job", however, not as the simpler one-line commands described above. Consider the following example where we want to search the CFS-L archive for all messages containing the character string "amalgam": // JOB Echo=No Database Search DD=A //A DD * SEARCH AMALGAM IN CFS-L INDEX PRINT /* If you send the text above to the LISTSERV where CFS-L is based (i.e., at nodename NIHLIST.BITNET or LIST.NIH.GOV) you will have sent to you a listing of all CFS-L messages that contain the word "amalgam" (regardless of whether any of the letters are upper or lower case in the messages). Please note that the NIH Listserv has a restriction on computing time that may block most search jobs from being completed UNLESS they are split into at least two separate jobs. A good way to do this is to add, at the end of your SEARCH command, a separate time interval restriction for each search job. For example, in your first job you might add FROM 1 AUG 92 TO 30 JUN 93 at the end of the SEARCH command (so that it might read SEARCH AMALGAM IN CFS-L FROM 1 AUG 92 TO 30 JUN 93 ), and similarly in the second search job add SINCE 1 JUL 93 . This will cover the entire archive, between the two separate jobs. In some cases you may need to break the job up into 3 batches by, e.g., by adding FROM 1 AUG 92 TO 30 OCT 93 to the first SEARCH command line, FROM 1 NOV 93 TO 30 MAR 94 to the second SEARCH command line, and SINCE 1 APR to the third. The "INDEX" command as shown above is unnecessary but it's useful to include it because sometimes a database search will exceed the maximum allowable output per job (2000 lines); the INDEX output will list all the items that had been found from the search, including what wasn't printed out because of the maximum limit. You can get those extra items by submitting another variation of the search command. If you use the command SEARCH AMALGAM IN CFS-L SINCE 13 NOV you will then be sent all messages that contain the word AMALGAM and had been sent on or after the 13th of November. You can also narrow your search by using the reserved word AND or broaden it by using the reserved word OR. E.g., entering SEARCH AMALGAM AND RESEARCH would yield only those messages which contained both of those words. A full description of how to use the LISTSERV database utility can be obtained by sending the "regular" LISTSERV command (i.e., not placed within a batch job) GET LISTDB MEMO to any LISTSERV. The one error in the LISTDB MEMO manual is that it says you must send database batch jobs to the address DATABASE@nodename whereas in fact you must send them to LISTSERV@nodename. ========================= = D. USENET newsgroups = ========================= Many people prefer the convenience of reading USENET newsgroups rather than receiving all messages from a mailing list distribution. Some mailing lists and newsgroups are linked. If you are looking for access to USENET, read the "CFS/ME Electronic Resources" guide which can be obtained by sending the command GET CFS-NET TXT as an e-mail message to the address LISTSERV@SJUVM.STJOHNS.EDU. Newsgroups ---------- bit.listserv.cfs.newsletter CFS-NEWS electronic newsletter Discussions on other health issues can be found in the hierarchies of be found in the bionet hierarchy. In early 1995 there will be a proposal to CFS-NEWS electronic newsletter, the CFS Newswire (CFS-WIRE), and Catharsis magazine (CATHAR-M). ================================================================ = E. CFS information on file: the SJUVM & Albany File Servers = ================================================================ CFS information files are available on the St. John's University Listserv and on the New York State Department of Health LISTSERV in Albany, New York. The Albany Listserv is more developed at this time, but the SJUVM Listserv is slowly developing into a major source for CFS and other health and disability related files. To use the SJUVM Listserv, send commands to LISTSERV@SJUVM.STJOHNS.EDU. To get a list of current files available, send the command GET CFS-FILE FILELIST to this Listserv address. To retrieve specific files, note the filenames on the FILELIST and then send the command GET to the LISTSERV address (each file has a two-part name). To be notified of newly added files in the future, send the command SUB CFS-FILE YourFirstName YourLastName to the Listserv address. To use the Albany Listserv, send commands by e-mail to LISTSERV%ALBNYDH2@ALBANY.EDU (or via BITNET to LISTSERV@ALBYNDH2) and use commands similarly as above, i.e. send GET CFS-D FILELIST to this Listserv address. It is possible to be automatically notified when a certain file is updated, or even to be sent the updated file, by using certain LISTSERV file commands. To be notified of an update to a file of interest to you -- say, CFS-RES TXT -- you would send the command FUI ADD CFS-RES TXT to the LISTSERV address. (The file CFS-RES TXT resides at many places, including LISTSERV@LIST.NIH.GOV.) Or to be sent the entire file, send the command AFD ADD CFS-RES TXT . For detailed information about automatic file commands, send the command GET LISTAFD MEMO to any LISTSERV address. It will be a good idea to establish a password at the LISTSERV where your files of interest reside, even though it is not necessary to do so to set úÿ úÿ(Continued from last message) FUI or AFD. A password will prevent network hackers from signing you up for file updates that you don't wish to receive. Send the command PW ADD XXXXXXXX (where XXXXXXXX is replaced with the password you've chosen -- be sure to write it down!). After a password is set, you must therafter always add PW=XXXXXXXX to the end of any FUI or AFD commands you use. ================================================================ = F. Further information about health resources and LISTSERV = ================================================================ A comprehensive guide to health information based on the Internet can be found in the Health Resources file maintained by Lee Hancock. The 1993 edition can be obtained by sending the command GET CFS MED-RES as an e-mail message to LISTSERV%ALBNYDH2@ALBANY.EDU. The current edition can be obtained by ftp from ftp.sura.net, directory /pub/nic/HealthResources with filenames in the form of medical.resources.xx-xx. It is also available via gopher from ukanaix.cc.ukans.edu, login kufacts, choose Departmental Inforamtion and then Medical Center Resources. Further detailed information about Listserv can be obtained by using the command GET and sending it to LISTSERV@LISTSERV.NET (see filenames below). LISTSERV REFCARD Commands reference card LISTSERV MEMO Gen'l Introduction to LISTSERV LISTSERV SITES A list of all LISTSERV sites LISTFILE MEMO File-server functions USING SERVERS Help in using LISTSERV, DATABASE, and NETSERV LISTDB MEMO Database functions LISTFAQ MEMO Frequently Asked Questions [could be subtitled How to Use Database to Answer Your Own Questions] ======================================================================= = G. Full service Internet facilities: gopher, ftp, telnet and www = ======================================================================= In addition to e-mail based facilities, some CFS resources are accessible by more advanced facilities available on many mainframes, and through full service Internet providers. ___________________________________________________________ ** gopher "Gopher" is a file-finding utility. The SJUVM Listserv at St. Johns University in New York can be accessed at gopher.stjohns.edu. It holds the CFS-FILE file base, and archives of the CFS-WIRE (Newswire) service and Catharsis magazine. ___________________________________________________________ ** ftp "ftp" stands for "file transfer protocol", and is a means of transfering files rapidly through Internet. A few CFS files are available via ftp at list.nih.gov in directory CFS-NEWS. The available files are: the monthly logs of the CFS-NEWS Electronic Newsletter (first see the file CFS-NEWS.INDEX); the CFS resource file CFS-RES.TXT; and this file. ___________________________________________________________ ** telnet "Telnet" refers to the remote login capability of Internet. The Project ENABLE BBS has just begun a telnet facility at enable.wvnet.edu, available for now from 9am-4:30pm Eastern Time (USA) on weekdays. The BBS hosts the Fidonet CFS "echo" (i.e. discussion group, listed as conference 101), and has many CFS files in its file area 23. The National Capital Free-Net (Ottawa) has a CFS section with discussion groups and info files. Telnet to freenet.carleton.ca and fill out and mail in the registration forms. When inside that system, enter the command "go cfseir" to get to the CFS section. ___________________________________________________________ ** www World Wide Web, or "www", is a facility which links many different Internet resources together on a related topic. A www "home page" for CFS is being developed at this time by Sandy Shaw . If your system doesn't have www but does have telnet, you can use www by telnetting into any of the following: fatty.law.cornell.edu; ukanaix.cc.ukans.edu; info.cern.ch; or www.njit.edu and login as "www". Then enter the following URL code: http://www.ncf.carleton.ca/freenet/rootdir/menus/social.services/ cfseir/CFSEIR.HP.html (We've wrapped this around to a 2nd line because otherwise it won't fit in this file, but you must type the entire URL code as one long line.) Other www resources are: The CFS Village, developed by Jason Hellwege accessible at http://www.latrobe.edu.au/Glenn/CFS.html Also, Molly Holzschlag's home page which contains pointers to her Catharsis magazine, the Pro-Health consumer service, and other resources, at http://www.indirect.com/user/mollyh/index.html -- end of document ------------------------------------------------- resources regarding chronic fatigue syndrome (CFS). Archive-name: medicine/chronic-fatigue-syndrome/cfs-resources Last-updated: 1993/9/27 CHRONIC FATIGUE SYNDROME Resource file for patients CFS-RES.TXT latest version: September 27, 1993 Copyright (c) 1993 by Roger Burns. Permission is granted to excerpt this document if the source, and the author (Roger Burns), are cited. Permission is also granted to reproduce the entirety of this document unaltered. Note that Fido and Fidonet are registered marks of Tom Jennings and Fido Software. The listing of public unix nodes from Bux Technical Services, Inc. shown in Section 7 below is copyrighted by that company, as indicated. CONTENTS 1. CFS -- Information and Networking 2. What is Chronic Fatigue Syndrome? 3. Support Groups 4. Periodicals, Books, Medical Articles 5. Sources of Electronic Information A: Discussions / Support B: BBSs C: Network services D: Files on Internet E: Back issues of CFS-NEWS 6. BBSs which carry Fidonet's CFS Conference 7. How to Get Access to the Networks A. Internet and Usenet B. Commercial Networks C. Fidonet This file has been created and is maintained by Roger Burns, a CFS patient. The author welcomes suggestions for improving this resource file, and can be contacted in the following ways: (postal) Roger Burns, 2800 Quebec St. NW #1242, Washington, DC 20008, USA; (telephone) 1-202-966-8738; (Internet) CFS-NEWS@LIST.NIH.GOV or CFS-NEWS@NIHLIST.BITNET; (FidoNet) Roger.Burns at 1:109/432; or post a message on the Fidonet CFS conference. The latest version of this file is always available on the Internet; send the command GET CFS-RES TXT as an e-mail message to the address listserv@list.nih.gov . FTP access is available at nodename list.nih.gov (128.231.64.10), directory CFS-NEWS, filename CFS-RES.TXT. The file has also been uploaded as filename CFS-RES.TXT to the following: Project ENABLE BBS, tel. 1-304-759-0727, file area 22; GEnie network, Page 970, category 18, file area 11; CompuServe forum GOODHEALTH, Library 17, (filename CFSRES.TXT). =================================================================== Section 1: CFS -- INFORMATION AND NETWORKING There is not enough information in this file to serve as a comprehensive resource for CFS patients. For referrals to doctors and other helpful information, CFS patients are urged to contact one of the national support groups listed under Section 3 below. The national groups can also refer you to local support groups, or advise you on how to start a local support group. Be sure to subscribe to one of the CFS newsletters such as the CFIDS Chronicle, the MEssenger, or one of the others published by the national groups listed in Section 3 below. ELECTRONIC NEWSLETTER. Current medical research updates can be obtained by subscribing to CFS-NEWS, the Chronic Fatigue Syndrome Electronic Newsletter. The newsletter is posted to the CFS "echo" (or conference) on Fidonet (see the next item, and Section 6) and is also available as USENET newsgroup bit.listserv.cfs.newsletter . It is on file on the Project ENABLE BBS, tel. 1-304-759-0727, file area 22. For an Internet subscription, follow the procedure in Section 5-C below (under Internet) or send an e-mail inquiry to the address CFS-NEWS@LIST.NIH.GOV. Back issues are available at the BBS mentioned above; also on the Tucson CFS BBS and on Compuserve and GEnie (see Section 5-E below). FIDONET CONFERENCE. It can be very helpful to join the CFS Conference and exchange information with the participants on the worldwide Fidonet network of personal computers. Access to Fidonet is usually free of charge. Currently, the conference is carried by 129 BBSs in the USA, Canada, Australia, Britain and the Netherlands. See Section 6. CFS DISCUSSIONS ON NETWORKS. There are active CFS discussions, and some files areas, on the CompuServe, Prodigy, GEnie and Internet computer networks. If you already have an account on one of these networks and wish to find where the CFS discussions & information are, see Section 5-C below. If you wish to find out how to get access to any of these networks, read Section 7 below. CFS NEWSWIRE. Support groups exchange news articles and other information worthy of re-publication on the CFS Newswire, available on Internet and on those services which connect to Internet (CompuServe, GEnie, Free-Net and others, and soon Prodigy). For further information on how to access Internet, see Section 7-A below. Once on Internet, send the command SUB CFS-WIRE to the address listserv@sjuvm.stjohns.edu . Newsgroup access is being further information, contact the CFS/ME Computer Networking Project described below. ELECTRONIC MAGAZINE. "Catharsis" is a CFS electronic newsmagazine which focuses on personal health, intellect and creativity. The magazine is posted to the CFS "echo" (or conference) on Fidonet (see the next item, and Section 6). For an Internet subscription, follow the procedure in Section 5-C below (under Internet) or send an e-mail inquiry to the editor (see below). The magazine is available as MEDBASE/CFS Tucson BBS at 1-602-790-7420 and on Compuserve and GEnie (see Section 5-E below). For inquiries contact editor Molly Holzschlag at the Electronic Information Exchange, PO Box 42225, Tucson, AZ 85733-2225, USA or at Fidonet Molly.Holzschlag@1:300/23 or at Internet CATHAR-M@SJUVM.STJOHNS.EDU. CFS INFORMATION AVAILABLE ON ELECTRONIC FILES. Many helpful information files on CFS are available on certain BBSs accessible to anyone with a personal computer and a modem, and also on various computer networks. See Section 5 below. NETWORKING PROJECT. The volunteer members of the CFS/ME Computer Networking Project assist individuals and support groups in using computer networks. They have written articles that may be re-published without charge which explain what CFS resources are available and where and how they can be found, and they have created a CFS Newswire service for news exchange between CFS support organizations (see above). For detailed information about Project services, send postal mail to The CFS/ME Computer Networking Project, PO Box 2397, Washington DC 20013 USA (when corresponding please include a stamped, self addressed envelope, or outside of the USA include an International Reply Coupon obtainable at your post office) or send Internet e-mail to cfs-me@sjuvm.stjohns.edu or Fidonet mail to CFS-ME at 1:109/432. Section 2: WHAT IS CHRONIC FATIGUE SYNDROME? Chronic Fatigue Syndrome (CFS) is also known as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) and outside of the USA is usually known as Myalgic Encephalomyelitis (ME). The syndrome is known primarily by debilitating fatigue accompanied by other flu-like symptoms, which can vary from patient to patient, including sore throat, low-grade fever, joint aches and an inability to concentrate. The symptoms often come and go in cycles. Medical research has associated CFS with low levels of the brain hormone cortisol and with viral activity, and on-going research is attempting to identify a specific virus or other physical agent as the clear cause. The treatments currently available have rather limited and varying effectiveness. The most common recommendations in dealing with CFS are to get as much rest as possible and to avoid physical and emotional stress. A summary of medical treatments appears in chapter 11 of _Running_On_Empty_ by Katrina Berne, Ph.D., and in part 2 of _Living_With_M.E._ by Charles Shepherd, M.D. (see Section 4 below). CFS sufferers are advised to seek help from a licensed health care practitioner who is familiar with the syndrome. They are also urged to join one of the various support groups (see next section) which advise CFS sufferers, publish newsletters and promote medical research of the syndrome. Section 3: SUPPORT GROUPS NOTE: Some local support groups are listed in files found on the Project ENABLE BBS (see Section 5-B below) and on Internet (see Section 5-D). === USA === CFIDS Association P O Box 220398 Charlotte, NC 28222-0398 answering machine: 800-442-3437 (44-CFIDS) or 1-704-362-2343 information line: 900-988-2343 (988-CFID) $2.00 1st minute, $1.00 each thereafter fax line: 1-704-365-9755 membership: $25/yr, includes subscr. to "CFIDS Chronicle" magazine services: will provide list of local support contacts, also list of physicians recommended by local patients; they raise funds for medical research, lobby U.S. Congress to influence health policy; the Chronicle magazine is excellent; IFMEA Medical Update (quarterly) available at $3 per copy. National CFS Association 3521 Broadway / Suite 222 Kansas City, MO 64111 telephone: 1-816-931-4777 Available: Quarterly newsletter $15/yr. general information packet $1 patient info. packet $5 physician's packet $10 how to be a phone contact $4 how to form a support group $6 CFS info. bibliography $3.50 CFIDS Foundation 965 Mission St., Suite 425 San Francisco, CA 94103 info line: 1-415-882-9986 from 1pm-3pm Pacific Time fax: 1-415-882-9758 publication "CFIDS Treatment News" (about twice yearly); subscr. in exchange for any donation (tax deductible). --- Fibromyalgia --- Fibromyalgia Network 5700 Stockdale Hwy, Suite 100 Bakersfield, CA 93309 info line: 1-805-631-1950 from 10am-2pm Pacific Time publication: FM Newsletter (quarterly); $15/yr USA, $17/yr Canada referrals to local FM groups -- EI/MCS: environmental illness / multiple chemical sensitivities - Human Ecology Action League P.O. Box 49126 Atlanta, GA 30359 tel. 1-404-248-1898 publishes The Human Ecologist (quarterly), resource and reading lists, information on EI/MCS National Center for Environmental Health Strategies 1100 Rural Avenue Voorhees, NJ 08043 tel. 1-609-429-5358 annual membership is $15/individual, $20/family, $25/prof.,business, $10/ltd. income, seniors, youth; services: newsletter Delicate Balance; technical assistance; referrals for medical, legal, ent'l. & public health specialists; books, reports, info packets; info on workplace issues; advocacy; Pesticide Exposure Project; help for local support groups American Acadmey of Environmental Medicine P.O. Box 16106 Denver, CO 80216 tel. 1-303-622-9755 Chemical Injury Information Network P O Box 301 White Sulphur Springs, MT 59645 contact: Cynthia Wilson, tel. 1-406-547-2255 support & advocacy; they publish the monthly "Our Toxic Times", available for any donation (no dues or subscription fees) National Foundation of Chemical Hypersensitivities and Allergies PO Box 222 Ophelia, VA 22530 tel. 1-804-453-7538 --- Lyme disease --- National Lyme Disease Foundation P.O. Box 462 Tolland, CT 06084 tel. 800-886-5963 or 1-203-871-2900 monthly newsletter $30/yr; many information pamphlets, videos; referrals to doctors === CANADA === The Nightingale Research Foundation 383 Danforth Avenue Ottawa, Ontario K2A 0E1 telephone: 1-613-728-9643 fax: 1-613-729-0825 membership: $35/yr. includes quarterly newsletter services: they support a network of local support groups; publish a 750 pp. CFS medical textbook edited by Dr. Byron Hyde, MD M.E. Association 246 Queen Street Suite 400 Ottawa, Ontario K1P 5E4 telephone: 1-613-563-1565 fax: 1-613-567-0614 membership: $35/yr. includes monthly newsletter "The MEssenger"; list of medical articles regarding CFS/ME provided on request. National ME/FM Action Network 3836 Carling Ave., Hwy 17B Nepean, ON K2H 7V2 membership $20.00/yr, soon to have newsletter === UK === Myalgic Encephalomyelitis Association Box 8 Stanford-le-Hope Essex SS17 8EX telephone: 44-0375-642466 advice line, 1-4pm: 44-0375-361013 fax: 44-0375-360256 membership: #12/yr dues includes subscr. to quarterly newsletter "Perpectives"; subscr. to quarterly IFMEA Medical Update is #8/yr other services: the advice line shown above gives counseling on welfare rights & other issues; refers patients to local support groups; provides medical journal articles & other info to physicians and others; makes speakers available to give talks; video library. Action for M.E. P.O Box 1302 Wells, Somerset BA5 2WE membership includes subscr. to Interaction journal 3 times/yr. dues: UK #12.50; Europe #17.50; overseas #27.50 air, #17.50 surface activities: works in partnership with over 200 local M.E. support groups, many of whom actively raise public awareness of the illness through media and local MPs etc.. publications: - Interaction journal w/o membership is #5 per year (UK); available on tape #2 per issue, cheque payable to ME Tapes, send to Melanie Kelly, 29 Blandfield Road, London, SW12 8BQ - Therapy Information Pack, 9 factsheets on a comprehensive range of M.E. therapies (Members #2:50, Non-Members #3:50) - Supplementary Factsheets 35p each: Information for Doctors, to help your GP A Guide for the Non-sufferer, to educate friends, relatives and work colleagues Information for Employers Advice for Young Sufferers, i.e. under 25`s other services: - Therapy Information Helpline 0959-525341 - Postal Library; Press Cuttings Library; Medical Library; General Lending Library - List of Recommended Consultants; member recommended consultants that have been found helpful in the past. - Free legal Advice - Pen Pals Service - Introductory video for sale or hire - Publicity posters and recruitment leaflets - retail discounts on Efamol Marine, probiotics, etc. Northern Ireland Region M.E. Association Bryson House 28 Bedford Street Belfast BT7 1HP tel. 44-0232-439831 Scotland M.E. Association 11 Queens Crescent Glasgow G4 9AS tel. 44-041-332-1651 fax: 44-041-332-0175 === AUSTRALIA === ME/CFS Society of New South Wales P.O. Box 449 Crows Nest, NSW 2065 telephone: 61-2-439-6026 fax: 906-7892 newsletter (quarterly): AUS$25 /yr. $12/yr for students, pensioners, those on benefit programs $30/yr for overseas subscribers (airmail) services: information; social worker; referrals to local support groups throughout NSW ME/CFS Society of Victoria 23 Livingstone Close Burwood, Victoria 3125 newsletter (quarterly) telephones: admin/social worker: 61-3-888-8991 ME/CFS Society of South Australia P.O. Box 383 úÿ úÿ(Continued from last message) GPO, Adelaide, South Australia 5001 telephone -- counseling & information: 61-8-373-2110 ME Syndrome Society of Queensland P.O. Box 12 Oxenford, Queensland 4210 tel. 61-75-73-2772 CFS Society of Western Australia 92 Powell Street Joondanna Perth Western Australia 6060 tel. 61-09-483-6667 === NEW ZEALAND === A.N.Z.M.E. Society P.O. Box 35-429 Browns Bay Auckland 10 publication "Meeting Place" $35/yr. for overseas airmail subscr. === IRELAND === Irish M.E. Trust 18 Upper Fitzwilliam St. Dublin 2 tel. 353-1761413 === NETHERLANDS === (Dutch M.E. Foundation) M.E. Stichting Office: Robert Scottstraat 4 1056 AX Amsterdam Postal address: Postbus 57436 1040 BH Amsterdam telephone: none membership: any donation newsletter: "MEdium" (quarterly), 30 guilders/yr. other services: send a self-addressed & stamped envelope to receive information brochure; IFMEA Medical Update is summarized in MEdium newsletter, full text is available at cost of copying & postage -- contact the office to ask what the exact price is (different for each issue) === BELGIUM === AFZ M.E. Predikherenstraat 2 B-3000 Leuven === DENMARK === Danish ME/CFS Association co/ A Midsem Maglehoj 86 DK-3520 Farum === NORWAY === Norges M.E. Forening Eikveien 96A 1345 Osteras telephone & fax: 47-2-249879 membership: 200 krona/yr includes subscr. to newsletter "ME Nyheter" issued 3 or 4 times per year other services: offers subscr. to UK Interaction magazine, 45 krona per year; provides IFMEA Medical Update (for now, no charge to members); support group meetings in Oslo === GERMANY === Selbsthilfegruppe CFS-Syndrom - Immundysfunktion c/o Birke Steinitz An St. Swidbert 52 D-40489 Duesseldorf telephone: 49-211-404376 === ITALY === C.F.S. Associazione Italia Segreteria: Via Moimacco 20 33100 Udine === HONG KONG === Hong Kong ME Information 60B Conduit Road, 3rd floor === PAPUA, NEW GUINEA === Papua, New Guinea Myalgic Encephalomyelitis Support Box 44 Ukarumpa, Via Lac === REPUBLIC OF SOUTH AFRICA === ME Awareness Group 66 Third Street Lower Houghton, 2198 M.E. Association of South Africa PO Box 461 Hillcrest 3650 Section 4: PERIODICALS, BOOKS, MEDICAL ARTICLES === PERIODICALS === > IFMEA Medical Update (quarterly) -- contact one of the following >CFIDS Chronicle -- see Section 3 above, USA "CFIDS Association" >MEssenger (monthly) -- see Section 3 above, Canada "M.E. Association" >Interaction (3/yr) -- see Section 3 above, ME Action Campaign (UK) or Norges ME Forening (Norway) >Meeting Place -- see Section 3 above, New Zealand "ANZME" >CFIDS Treatment News (twice yearly) -- see Section 3 above, USA "CFIDS Foundation" >FM Newsletter (quarterly) -- see Section 3 above, USA "Fibromyalgia Network" >Heart of America Newsletter (quarterly) -- see Section 3 above, USA "National CFS Association" St., Waltham, MA 02154, USA. $20/yr. >CFS DysPatch Newsletter (about 6 per year) -- from CFS Information & Support Group of Charleston, Inc., 997 Johnnie Dodds Blvd. #811, Mt. Pleasant, SC 29464. Subscription: USA $15/yr., Canada US$17, Foreign $24, make check payable to CFS Inc. === BOOKS === "Living With M.E.: the Chronic/Post-Viral Fatigue Syndrome", new edition for 1992, by Dr. Charles Shepherd, MD. 380 pp. North America: send $13.99 to Butterworth Canada Lt'd., 75 Clegg Road, Markham, Ontario L6G 1A1, CANADA. Canadian customers add 7% GST. Add $4 if not pre-paid. Accept VISA & M/C. Fax # 1-416-479-2826. Britain: send #8.00 to Reed Consumer Books, Dept. SP, First Floor, FREEPOST, Michelin House, 81 Fulham Road, London SW3 6YZ. Accept Access/American Express/Barleycard/ Diners Club/Visa. Australia: $12 plus $4 postage, send to ME/CFS Society Victoria Inc., 23 Livingstone Close, Burwood, Victoria, 3125 Australia. "Chronic Fatigue Syndrome: A Pamphlet for Physicians", publication # 92-484, by the staff of NIH; May 1992; 15 pages; free of charge. For copies, contact Office of Communications, N.I.A.I.D., Building 31 Room 7A32, 9000 Rockville Pike, Bethesda, MD 20892, tel. 1-202-496- 5717. [Note: the text of this pamphlet is available as an electronic file, on Internet as filename CFS NIH-DOC and on various BBSs as CFS-NIH.DOC; see Section 5, subsections B and D, below.] "Running On Empty: Chronic Fatigue Immune Dysfunction Syndrome" by Katrina Berne, Ph.D.; 1992; 320 pages; softcover $13.95, hardcover $21.95, add shipping cost: $2 USA, $3 Canada; make check payable to Hunter House Inc., 2200 Central Ave., Alameda, CA 94501-4451, USA; or use VISA or M/C; tel. 1-510-865-5282, fax 1-510-865-4295. "The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome" edited by Dr. Byron Hyde MD, 75 articles by 80 researchers; 1992; 750 pp.; $140.00 Canadian or US, which includes postage and handling, Canadian orders are not subject to GST; $85 for patients, or contact Foundation for commission policy; VISA, MasterCard or American Express, include signature, card number and expiration date; order via telephone 1-613-728-9643 or fax 1-613-729-0825. Make checks or bank drafts payable to Nightingale Research Foundation, 383 Danforth Avenue, Ottawa, Ontario K2A 0E1, CANADA. "Chronic Fatigue Syndromes: The Limbic Hypothesis" by Dr. Jay Goldstein, M.D. 259 pages. 27 color plates. Softbound $49.95 ISBN 1-56024-904-8; Hardbound $89.95 ISBN 1-56024-433-X. Add shipping & handling charges: USA, $2.75 by mail ($3.75 by UPS); Outside USA, surface $4.50, air $6.00. Checks and money orders should be in U.S. funds. New York State residents should identify their county and add appropriate sales tax after shipping and handling. In Canada, add 7% before shipping for Canadian GST. Accept VISA, M/C, AMEX: include account #, expiration date, signature (for M/C also include bank #); if paying from outside the USA be sure to allow for the current exchange rate. US libraries and institutions may be billed later; send PO# and signature. Orders may be placed by calling tel. (USA & Canada) 1-800-342-9678 or (international) 1-607-722-5857 from 9am-5pm EST. Send mail orders to The Haworth Medical Press, 10 Alice Street, Binghamton, NY 13904-1580, USA. === MEDICAL ARTICLES === Klimas N; Salvato F; Morgan R; Fletcher M; "Immunologic abnormalities in chronic fatigue syndrome". J of Clinical Microbiology 28:1403-1410 (June 90) [Study showing that NK cells (a kind of immune cell) malfunction in CFS patients; other abnormalities] Buchwald D; Komaroff A; Cheney P; et al.; "A chronic illness characterized by fatigue, neurologic and immunologic disorders and HHV-6 infection". Ann Int Med 116:103-112 (Feb 1992) [Study showing many CFS patients have HHV-6 infections] Demitrack M; Dale J; Straus S; et al.; "Evidence for Impaired Activation of the Hypothalamic-Pituitary-Adrenal Axis in Patients with Chronic Fatigue Syndrome". J of Clinical Endocrinology & Metabolism 73:1224-34 (Dec 1991) [shows chemical abnormalities in the brains of CFS patients] Straus S; Strober W; Dale J; Fritz S; Gould B; "Lymphocyte Phenotype and Function in the Chronic Fatigue Syndrome". J of Clinical Immunology 13:30-40 (Jan 93) [Study showing T4 cell (a type of immune cell) abnormalities in CFS patients] Lusso P; Malnati M; Garzino-Demo; Crowley; Long; Gallo; "Infection of natural killer cells by human herpesvirus 6". Nature 362:458-462 (April 1 1993) [HHV-6 -- previously found in CFS patients -- now shown to kill NK cells (a type of immune cell) -- a small but important advance in research] Section 5: SOURCES OF ELECTRONIC INFORMATION: === A: DISCUSSIONS / SUPPORT === For a description of electronic discussions on Fidonet and other computer networks, see Section 1 above. === B: BBSs === PROJECT ENABLE BBS : 1-304-759-0727 Cross Lanes, West Virginia USA Sysop: Tom Freeman MEDBASE / TUCSON CFS BBS : 1-602-790-7420 Tucson, Arizona USA sysop: Molly Holzschlag USA CFIDS/CFS BBS : 1-207-623-8486 Augusta, Maine USA Sysop: John Kossowan WHOLENOTE BBS : 1-704-251-9863 Asheville, North Carolina USA Sysop: Will McGruffin > over 100 files of CFS information Lifeline BBS : 1-904-276-4724 Jacksonville, Florida USA Sysop: Gail Hitson Health Support BBS : 1-904-727-7794 Jacksonville, Florida USA Sysop: Linda Solomon MED-INFO BBS : 1-904-246-1481 Jacksonville, Florida USA SOUTH OF THE RIVER : 1-913-642-7907 Kansas City, Kansas USA NATIONAL CAPITAL FREENET : 1-613-780-3733 Ottawa, Ontario CANADA (enter GO CFSEIR) WHOLEBIT COMPUTER NEWS : 1-613-521-3690 Ottawa, Ontario CANADA Sysop: Sandy Shaw BLACK BAG BBS : 1-302-994-3772 Newport, Delaware USA Sysop: Ed Delgrosso, M.D. WELLSPRING BBS : 1-714-856-7996 Irvine, California USA Sysop: Steve Clancy > a service of the Univ. of California/Irvine Biomedical Library SHAKING HANDS : 44-252-626233 Fleet, BRITAIN MEGAHERTZ (Midn-6am): 44-81-595-1921 London, BRITAIN Sysop: Lloyd Hopkins DUTCH HEALTH BBS : 31-55-337951 Apeldoorn, NETHERLANDS SPACIAL EXPANDER BBS : 61-2-6733559 Sydney, AUSTRALIA === C: NETWORK SERVICES === This subsection covers "what CFS resources are on the networks, and where to find them once you're on the network". To find out how to get on the various networks, see Sections 6 and 7 below. FIDONET CFS CONFERENCE, also known as the Fidonet CFS "echo", is a very active CFS discussion group. It's available on BBSs world-wide that usually charge no user fees. (The conference is described further in Section 1 above). A list of BBSs that currently carry the conference is in Section 6 below, and if none are nearby to you then there is advice on how to get a local Fidonet BBS to carry the conference, or "echo", in Section 7 below. PRODIGY computer service has a very active CFS discussion group. Prodigy is available in the USA only. To get to the CFS section, [JUMP] Medical Support and then choose the topic devoted to Chronic Fatigue Syndrome. Prodigy plans to add Internet e-mail in the autumn of 1993. For sign-up and cost information, see Section 7 below. GENIE computer service has an active CFS discussion & files area. Subscribers may go to page 970 and choose Category 18. Files are in area #11. Internet e-mail is available; for beginner's help with *sending* Internet mail, enter the command M 207. However, to regularly send and read Internet mail, use the usual GEnie mail area at page 200. To send, simply Add "@INET#" to the end of any Internet address in order to send to that address; e.g. to send mail to the CFS-NEWS editor whose Internet address is cfs-news@list.nih.gov you should send your GE Internet mail to cfs-news@list.nih.gov@inet# . For sign-up and cost information, see Section 7 below. INTERNET has the CFS-L conference, the CFS-NEWS electronic newsletter, the CFS Newswire service, the Catharsis Newsmagazine, and information files available on 2 different Listservs (see the following subsection). There are also discussion groups on general immune system dysfunction; fibromyalgia, holistic lifestyle, vegetarianism, and other topics. - To join CFS-L or CFS-NEWS, Internet users can send a subscription command by e-mail in the form of SUB to the automated administrator at LISTSERV@LIST.NIH.GOV ; e.g., send the command SUB CFS-NEWS John Doze to that address. If there is any difficulty, send an inquiry by e-mail to the moderator at address CFS-NEWS@LIST.NIH.GOV . - the CFS Newswire (listname CFS-WIRE) and Catharsis magazine (listname CATHAR-M) are available at a different Listserv address. To subscribe the, send the command SUB to the address LISTSERV@SJUVM.STJOHNS.EDU . If there is any difficulty, send an inquiry to the Newswire operators at CFS-WIRE-REQUEST@SJUVM.STJOHNS.EDU, or to the Catharsis editor at address CATHAR-M@SJUVM.STJOHNS.EDU . Internet also has the FIBROM-L and "immune" discussion groups. FIBROM-L is a Listserv discussion group devoted to fibromyalgia issues. To join, type the command SUB FIBROM-L , where your name replaces , and send it to LISTSERV@UIUCVMD.BITNET or to LISTSERV@VMD.CSO.UIUC.EDU . To join "immune", send a request to the list-owner at address immune-request@weber.ucsd.edu . For information on getting access to Internet, see Section 7 below. For information about other discussion groups, send the command GET CFS NET-HELP to the address listserv@list.nih.gov . COMPUSERVE computer service has begun a CFS discussion in its Health & Fitness Forum. Enter GO GOODHEALTH, find message section 17 (Self-Help/Support) and see messages with "CFS" in the subject header. Be sure that messages which you post include "CFS" in the subject header. There are information files in GOODHEALTH's Library 17 as well; using the Library section's Browse command, do a keyword search on "CFS". Compuserve offers Internet e-mail access: enter GO MAIL and when entering an address, insert >INTERNET: before the Internet address. For sign-up and cost information, see Section 7 below. USENET "newsgroups" are available on the UUCP network and are carried by a number of BBSs (see NIXPUB and PDIAL info in Section 7 below). Both CFS-NEWS and the CFS-L discussion group are seeking approval to now, CFS-NEWS is gatewayed to bit.listserv.cfs.newsletter and the FREE-NETS are non-profit systems in various cities (all inter- connected) that offer free access to Internet e-mail and other services (see Section 7 below). From any of the Free-Nets you can access the CFS section on the National Capital Free-Net in Ottawa (or telnet to 134.117.1.25). Once in that system, enter the command GO CFSEIR to get to that section. MCI-MAIL offers Internet electronic mail and all in-coming messages are free, thus this service is excellent for receiving CFS-NEWS, CATHAR-M and monitoring the CFS-L discussion group. However, out-going messages are expensive. They also offer faxes and other communication services. For sign-up and cost information, see Section 7 below. === D: FILES ON INTERNET === A general description of, and means of access to, the Internet appears in Section 7 below. Information files about CFS are available for retrieval by e-mail from the Internet. The Albany Listserv is at address LISTSERV@ALBNYDH2.BITNET or alternatively LISTSERV%ALBNYDH2.BITNET@ALBANY.EDU. To get a list of available files, send the message GET CFS-D FILELIST to the above address. To get any specific file, send the message GET (each file has a two-part name). For example, to retrieve the latest version of THIS file (which is named CFS-RES TXT), send the message GET CFS-RES TXT . To automatically receive future notices about updates to the CFS filelist, create the message SUB CFS-D where your name replaces , and send it to the LISTSERV address shown above. A new base of CFS information files is being developed at the SJUVM Listserv. To get a list of available files, send the message GET CFS-FILE FILELIST to the address LISTSERV@SJUVM.STJOHNS.EDU or to LISTSERV@SJUVM.BITNET . To get any specific file, send the message GET (each file has a two-part name) to the Listserv address above. === E: BACK ISSUES OF CFS-NEWS === CFS-NEWS back issues are stored on several systems. úÿ úÿ(Continued from last message) - via Internet e-mail, send the command GET CFS-NEWS ### (where ### represents a particular issue number, e.g., for issue #21, ### would be 021) as e-mail to LISTSERV%ALBNYDH2.BITNET@ALBANY.EDU - via Internet anonymous ftp, connect to list.nih.gov (128.231.64.10), directory CFS-NEWS, monthly logs in the form of - on the Project ENABLE BBS in Cross Lanes, West Virginia USA at tel. 1-304-759-0727 in file area 22; - on the Fidonet CFS echo or USENET newsgroup bit.listserv.cfs.newsletter, check previous messages. - on Compuserve in the GOODHEALTH forum, section 17, filenames in the form of CFSNEW.### (where ### represents a particular issue number, e.g., for issue #21, ### would be 021) . Also on GEnie on page 970, Category 18, file area 11, filenames CFS-NEWS.###. And on the MEDBASE / Tucson CFS BBS at tel. 1-602-790-7420, in the newsletter section. Section 6: BBSs WHICH CARRY FIDONET'S CFS CONFERENCE Fidonet is a volunteer network of personal computer "bulletin board systems" (BBSs) which can be accessed by anyone with a personal computer and a modem. The CFS Conference on Fidonet is sponsored by the West Virginia Research and Training Center in Cross Lanes, West Virginia USA. The conference can be reached at any of the 128 BBSs listed below (although additional BBSs are joining every week). Each day, participants exchange and discuss experiences about treatments and other issues. If none of these BBSs are particularly near to you, see subsection 7(B) below about further access to Fidonet BBSs. The following listing is compiled and maintained by Mr. Sandy Shaw. CFS CONFERENCE BBS LIST as of July 29, 1993 === USA === MetaBoard Birmingham AL 1-205-254-3344 Ken's BBS Montgomery AL 1-205-244-0296 The Whole-Wheat Twinkie Little Rock AR 1-501-227-9600 The U.S.A. BBs N Little Rock AR 1-501-753-8575 Golden Valley PonyRom Kingman AZ 1-602-757-0385 Comm-Post Tucson AZ 1-602-571-9063 Prologue Tucson AZ 1-602-741-7851 Clovis-Net Clovis CA 1-209-292-3530 The Beemer Board Manteca CA 1-209-823-0854 One World Los Angeles CA 1-310-372-0987 Body Dharma Online Berkeley CA 1-510-836-4717 WPGS Adelanto CA 1-619-246-5166 Mushin BBS San Diego CA 1-619-535-9580 Shenk's Express La Mesa CA 1-619-697-8873 Serenity in Sonoma Santa Rosa CA 1-707-576-0397 CA Self-Help Library Anaheim CA 1-714-952-2110 Central Computer Banks Tujunga CA 1-818-352-2993 Mysteria Tujunga CA 1-818-353-8891 ST-Keep Support Citrus Height CA 1-916-729-2968 The Crypts of Chaos Roseville CA 1-916-781-2092 Denver Goodwill Westminster CO 1-303-650-7732 Cuerna Verde BBS/2 Pueblo CO 1-719-545-8572 The Handicap News Shelton CT 1-203-926-6168 The Dosadi Experiment Wethersfield CT 1-203-257-9906 EmeroGronican II Wethersfield CT 1-203-721-0706 Black Bag BBS Newark DE 1-302-994-3772 The 'us' Project Wilmington DE 1-302-529-1650 SpaceCon BBS Audubon FL 1-407-459-0969 The Above Board Sarasota FL 1-813-377-1470 GammaTown BBS Sunrise FL 1-305-572-7060 Health Support Jacksonville FL 1-904-727-7794 Lifeline Jacksonville FL 1-904-276-4724 MedInfo Jacksonville FL 1-904-246-1481 The Fire Escape St. Augustine FL 1-904-823-0947 Southern Crescent Forest Park GA 1-404-363-0194 The Public's Domain Martinez GA 1-706-860-5070 Karma *VS Dogma Des Moines IA 1-515-288-7793 Silver Slipper BBS Pekin IL 1-309-346-6829 BearWiz Peoria IL 1-309-697-1011 I Can! BBS Chicago IL 1-312-736-7434 The Llama Kingdom Rockford IL 1-815-654-7956 Special Needs BBS Whiting IN 1-219-659-0112 South of the River Kansas City KS 1-913-642-7907 N.O.P.C. Club BBS New Orleans LA 1-504-486-7249 Middlesex News BBS Framingham MA 1-508-872-8461 StarBase Boston MA 1-617-739-9246 VIBUG Boston MA 1-617-767-2909 Real Times Boston MA 1-617-783-8820 The Twilight Clone Rockville MD 1-301-946-3070 Light Source Silver Spring MD 1-301-439-7437 NatureNet BBS Silver Spring MD 1-301-585-5680 The Idea Link Silver Spring MD 1-301-949-5764 Message Express Marysville MI 1-313-364-4162 Boat Town USA Mt. Clemens MI 1-313-468-0912 New Life BBS Sterling Heights MI 1-313-795-5829 The Lyme Light Warren MI 1-313-774-5038 Twin Star Waterford MI 1-313-623-6314 Ancient Heart Saginaw MI 1-517-752-3203 DRAGnet Andover MN 1-612-753-1943 Doc in the Box BBS Jefferson City MO 1-314-893-6099 On-Line Radio Wave Kansas City MO 1-816-561-3650 Electronic Dreams BBS Jackson MS 1-601-372-6998 The Orphanage Charlotte NC 1-704-873-2058 Deredain's Realm Fair Lawn NJ 1-201-796-2752 SelfHelp BBS Elizabeth NJ 1-908-289-3981 The Electronic Trib Albuquerque NM 1-505-823-7700 CIC/S.I.G.C.A.P.H Churchville NY 1-716-293-2692 Med TechNet Buffalo NY 1-716-688-1552 IN*TOUCH Rochester NY 1-716-594-1222 Acorn I Marlboro NY 1-914-236-3265 Purple Rose of Cairo Poughkeepsie NY 1-914-473-1697 Nerd's Nook II Rocky River OH 1-216-356-1772 Olman BBS Beavercreek OH 1-513-427-9473 Michele's BBS Miamisburg OH 1-513-435-1163 The Book Club BBS Columbus OH 1-614-268-8050 Bitter Butter Better Tigard OR 1-503-620-0307 Oregon Desert Madras OR 1-503-475-3056 Modern BBS / Compu Mail Hatboro PA 1-215-638-2334 Chronicles of Narnia Philadelphia PA 1-215-464-9068 The Pythonian Philadelphia PA 1-215-676-3618 ECBear Philadelphia PA 1-215-755-1917 US Telematics Yardley PA 1-215-493-5242 Sounding Board Pittsburgh PA 1-412-621-4604 The Programmers Pit York PA 1-717-845-2725 Matric Limited Franklin PA 1-814-437-5647 The Equalizer BBS Dalzell SC 1-803-469-2018 The Soul Connection San Antonio TX 1-210-674-1242 FIAWOL/MS-Connection Dallas TX 1-214-790-6472 National Amputee Connection Dallas TX 1-214-238-0928 Enterprise BBS Austin TX 1-512-453-5079 A Little Corner in Time Houston TX 1-713-451-6066 MacEndeavour Houston TX 1-713-640-1298 The Recovery Corner Burleson TX 1-817-447-1619 Sky's The Limit Adanet El Paso TX 1-915-594-7806 HandiNet BBS Virginia Beach VA 1-804-496-3320 Le Maison De Metal Lacey WA 1-206-493-0798 Darkstar System Longview WA 1-206-578-1157 Rob's Wreck Room Longview WA 1-206-578-1948 WCIS#2 Seattle WA 1-206-767-7681 Project Enable Cross Lanes WV 1-304-759-0727 === CANADA === Generations Calgary AB 1-403-251-5540 The Messhall Calgary AB 1-403-286-7545 Alberta On-Line RBBS Edmonton AB 1-403-466-7613 Owl & PussyCat Abbotsford BC 1-604-436-3271 Metamorphosis N. Vancouver BC 1-604-986-8791 Second Chance Nanaimo BC 1-604-753-9137 Square Hole Nanaimo BC 1-604-756-3177 T.R.A.C.E. Richmond BC 1-604-272-5888 The BandMaster Vancouver BC 1-604-266-7754 Acropolis HST Grimsb ON 1-416-945-6131 The House of Comments Pickering ON 1-416-831-6102 The Artsy-Fartsy BBS Toronto ON 1-416-465-7436 Leftover Hippies Toronto ON 1-416-466-8931 Can-Do Systems group Toronto ON 1-416-604-1221 AbleLINK Toronto ON 1-416-650-5411 Canada Remote Systems Toronto ON 1-416-798-4713 Crawlin' Kingsnake Kitchener ON 1-519-744-6266 Chans Land BBS! Stratford ON 1-519-273-5607 Home Base St. Thomas ON 1-519-633-7253 Disability Access BBS Ottawa ON 1-613-837-5473 Echo Valley Ottawa ON 1-613-749-4550 Ottawa-Orleans P.S. UG Ottawa ON 1-613-747-7665 Parity Error EMCS Ottawa ON 1-613-737-0966 The Procrastinators Ottawa ON 1-613-669-0617 Wholebit Computer News Ottawa ON 1-613-521-3690 Viking's Cove Trenton ON 1-613-394-5919 === AUSTRALIA === Heaven's Door St. Ives NSW 61-2-440-8364 The Runway Stanmore NSW 61-2-569-5130 Big Tedd's Fitzroy VIC 61-3-417-2440 Imail & FileMgr Support Coldstream VIC 61-3-739-0028 The Homeless BBS Frankston VIC 61-3-783-1275 Atropos Wantirna South VIC 61-3-887-1485 Perth Omen Perth WA 61-9-244-2111 === BRITAIN === Shaking Hands Fleet UK 44-252-626233 MEgahertz (Midn-6am) London UK 44-81-595-1921 === NETHERLANDS === Dutch Health BBS Apeldoorn NL 31-55-337951 The CFS echo is on Fidonet's North American backbone. To pickup the CFS echo feed directly, sysops can dial in North America to 1-304-759-0727, in Europe to 44-81-595-1921 (Midn-6am GMT), and in Australia to 61-3-417-2440. Please post corrections and updates of the above information to the CFS echo to the attention of Sandy Shaw, or send e-mail to Mr. Shaw at Fidonet 1:163/221, or Internet aa328@freenet.carleton.ca . Section 7: HOW TO GET ACCESS TO THE NETWORKS This section describes how to get on Internet, Usenet, the commercial networks, and how to find a BBS near to you that will carry the CFS conference if none of those listed in Section 6 above are near you. To see descriptions of what CFS resources are available on these various networks, see Section 1 and subsection 5-D above. A. INTERNET AND USENET "The Internet" is the name for the rapid communications network which uses electronic mail and other services to link most mainframe computers around the world. On the Internet you can get quick access to the CFS-NEWS electronic newsletter, and you can participate in the CFS-L worldwide discussion group and other groups, all available through Internet e-mail. Access to Internet can be gained through: - various "Free-Nets", listed below; - free or low-cost public unix nodes, listed below; - most of the commercial services described in subsection 5-D above, (and whose costs are described in subsection B below); FREE / LOW-COST INTERNET ACCESS. FREENET. The various Free-Nets allow Internet access at little or no cost. Current Free-Nets (FNs) now operating are as follows: Name Location Dial-in login info ------------- ------------ -------------- ----------- Denver FN Denver CO 1-303-270-4865 login: guest CapAccess Washington DC 1-202-785-1523 login: visitor password: guest Tallahassee FN Tallahassee FL 1-904-488-5056 login: visitor Heartland FN Peoria IL 1-309-674-1100 login: bbguest COIN Columbia MO 1-314-884-7000 login: guest Big Sky Telegraph Dillon MT 1-406-683-7680 login: bbs Buffalo FN Buffalo NY 1-716-645-6128 login: freeport Cleveland FN Cleveland OH 1-216-368-3888 login: Select #2 at first menu Lorain County FN Elyria OH 1-216-366-9721 login: guest Youngstown FN Youngstown OH 1-216-742-3072 login: visitor TriState Online Cincinnati OH 1-513-579-1990 login sequence: cbos, visitor, 9999, Medina County FN Medina OH 1-216-723-6732 Victoria FN Victoria BC 1-604-595-2300 login: guest National Capital FN Ottawa ON 1-613-780-3733 Citynet Wellington NZ write to Computer Services, Wellington City Council P.O. Box 2199, Wellington, NZ For more information on Free-nets contact NPTN (National Public Telecomputing Network), P.O. Box 1987, Cleveland, Ohio 44106 USA, tel. 1-216-247-5800, FAX: 216-247-3328, Internet info@nptn.org, anonymous ftp to nptn.org (192.190.49.8) /pub/info.nptn/ . ==================================================================== PUBLIC UNIX NODES (July 5, 1993). The following information is copyrighted. Below is a list of Public Unix nodes, most of which offer free or low-cost use of Internet e-mail, and many offer access to newsgroups. The following data is used at your own risk and cost. Name Location Dial-in login info ------- ------------------ -------------- ----------- coyote Tucson AZ 1-602-293-3726 szebra Sunnyvale CA 1-408-739-1520 login: bbs gorn Santa Cruz CA 1-408-458-2289 login: gorn uuwest Sunnyvale CA 1-408-245-7726 login: new woodowl Livermore CA 1-510-294-8591 netlink San Diego CA 1-619-453-1115 login: bbs cyber Encinitas CA 1-619-634-1376 login: guest nyx Denver CO 1-303-871-3324 login: new admiral Greenwich CT 1-203-661-1279 vicstoy Orlando FL 1-407-299-3661 login: bbs passwd: (none) amaranth Pensacola FL 1-904-456-2003 oaknet Oak Lawn IL 1-708-425-8739 lunatix Lexington KY 1-606-233-2051 genesis North Reading MA 1-508-664-0149 anubis Jackson MI 1-517-789-5175 pnet51 Minneapolis MN 1-612-473-2295 login: pnet id: new tutor Lebanon NH 1-603-448-5722 kilowatt Deer Park NY 1-516-586-4743 tnl Troy NY 1-518-237-2163 login: new exuco1 Buffalo NY 1-716-634-6552 bluemoon Reynoldsburg OH 1-614-868-9980 techbook Beaverton OR 1-503-220-0636 m2xenix Portland OR 1-503-297-3211 medsys Kingsport TN 1-615-288-3957 login: bbs pass: bbs sdf Dallas TX 1-214-436-3281 sugar Houston TX 1-713-684-5900 nuchat Houston TX 1-713-668-7176 bitsko Salt Lake City UT 1-801-566-6283 wyvern Norfolk VA 1-804-627-1828 tnc Fairfax Station VA 1-703-803-0391 solaria Milwaukee WI 1-414-321-9287 login: help madnix Madison WI 1-608-273-2657 login: bbs ichlibix Blainville QU 1-514-435-8896 infocom Berkshire UK 44-734-34-00-55 login: new scuzzy Berlin DE 49-30-694-61-82 login: guest isys-hh Hamburg DE 49-40-494867 odbffm Frankfurt/Main DE 49-69-308265 nervous Rimini (Fo) IT 39-541-27135 ixgch Kaiseraugst CH 41-61-8115492 cavebbs Wellington NZ 64-4-564-2314 The information above is a selection of the complete NIXPUB listing and is shown here by special arrangement with Bux Technical Services. (C) Copyright 1993 by Bux Technical Services. This publication is released for unlimited redistribution over any electronic media, and is released for reproduction in the publications of any not-for- profit patient group publications providing it remains in its original form. Otherwise publishing, removing this copyright notice, or in any way revising this document's contents is forbidden without written consent from the owner (contact Bux Technical Services, PO Box 110, Doylestown, PA 18901 USA; internet phil@bts.com; tel. 1-215-348-9721, Fax 1-215-348-2567). ==================================================================== If you want the complete NIXPUB file, which shows many more nodes than listed above, note that it comes in 2 versions: long, and short (1-line descriptions). They are available from the UNIX DEPOT BBS (7 bits, even parity) at 1-215-348-9727; login as nuucp, enter the BBS service, filenames /usr/spool/uucppublic/nixpub and *.short . On the Internet, send mail with the message text containing "get PUB nixpub.long" or "get PUB nixpub.short" to mail-server@bts.com. Another source, the PDIAL file, contains a list of public unix nodes which offer a wide variety of services for fees that are moderate or expensive. It is available at the Project ENABLE BBS at telephone 1-304-759-0727 in file area 22 as filename PDIAL.TXT. On Internet, send email with the subject "Send PDIAL" to the address info-deli-server@netcom.com . B. COMMERCIAL NETWORKS The CFS resources that are available on the following services were described in subsection 5-D above. What appears below is information on costs and how to sign up. GENIE. To join, call 1-800-638-9636 in the USA or Canada. GENIE service in the USA is $8.95/month. The hourly rate is $3/off-peak, $9.50/peak (i.e., Mon-Fri 8am-6pm). In Canada, GEnie is $10.95 per month. The hourly rate is $4/peak, $12/off-peak. Four hours of free credit are allowed to all customers each month. Internet e-mail is billed as part of the overall service. PRODIGY is available in the USA only. To join call 1-800-776-3449. There are 3 pricing plans and the cost for each needs local tax added. The "value plan" is $14.95 per month and includes all use of "core" services (which do *not* include the CFS/Medical Support area) for no extra hourly usage fee; "Plus" services are charged by the standard rates (see below). The "alternate plan 1" is $7.95/month which includes 2 free hours of core and/or Plus services; extra hours beyond the 2 free hours are billed. The "alternate plan 2" is $19.95/month which includes 8 free hours of core and/or Plus úÿ úÿ(Continued from last message) services; extra hours beyond the 8 free hours are billed. Participants in the Medical Support board where the CFS topic is get a price special break: 5 hours free usage per month plus $2.40 per each hour thereafter while in the Medical Support/CFS area. Outside of the Medical Support area, the standard hourly rates, when applicable, are $4.80/hr for 0 to 3 hours, $4.20/hr for over 3 to 6 hours, and $3.60/hr for over 6 hours billed. There are additional fees for sending e-mail. Prodigy plans to add Internet e-mail in the autumn of 1993. COMPUSERVE. To join in North America, call 1-800-848-8199 (see other numbers below). They have 2 pricing plans. The Standard plan is $8.95/month for basic services, and the hourly rates are: 300 baud, $6/hr; 1200 or 2400 baud, $8/hr; 9600 baud, $16/hr. (INTERNET: There is no hourly rate while using mail under this plan; instead, Internet messages sent or received are billed at $0.15 per 1st 7500 characters, $.05 for each 2500 characters thereafter, and there is a $9/month mail allowance.) The Alternative plan is $2.50/month; the hourly rates are: 300 baud, $6.30/hr; 1200 or 2400 baud, $12.80/hr; 9600 baud, $22.80/hr. (INTERNET: use of the mail area is simply billed at this plan's regular hourly rate.) Prices are higher outside of North America. For overseas information call 1-614-457-0802 (Ohio, USA) or call toll-free in Australia 008025240, New Zealand 0800446113, U.K. 0800289378, or Germany 01303732. MCI-MAIL. For sign-up information in the USA call 1-800-444-6245. The annual fee is $35.00. (INTERNET: All in-coming messages are free. There is a charge for out-going messages depending on the size of the message: the first 500 characters are 50 cents; the next 500 are an additional 10 cents; each thousand characters from 1,001 to 10,000 are an additonal 10 cents; each thousand characters above 10,001 are 5 cents each.) For service outside of North America call 1-202-833-8484 in Washington, DC or in the UK call 44-71-9281232 or in Germany call 49-89-4313071. AMERICA ON-LINE sign-up information can be found at telephone 1-800-827-6364. The cost is $9.95/month and the connect-time rate is $3.50/hour after the 5 free hours given each month. C. FIDONET If you don't have a nearby BBS which carries the CFS conference (as listed in Section 6 above) but would like to have local access, ask Fidonet BBSs near to you to please carry the conference (usually referred to as an "echo"). If you don't know of Fidonet BBS nearby to you, then consider the following sources: 1. If you are the contact person for a support group, then contact the CFS/ME Computer Networking Project for assistance (see description & address at the end of section 1 above). 2. Get a copy of the Handicap BBS file and find the Fidonet BBS nearest to you. Since the BBSs listed in this file already deal with health-related issues, they may be particularly amenable to a request to carry the CFS echo. In the file, the Fidonet BBSs will be those which are accompanied by designations like (123/456). The file can be found on the Handicap News BBS at 1-203-337-1607, filename HCAPBBS.LST or *.ZIP. Or do anonymous ftp from handicap.shel.isc-br.com (129.189.4.184) and get bbslists/hcapbbs.lst or *.zip. On the Internet, send the message GET CFS-BBS HANDICAP as e-mail to the address LISTSERV%ALBNYDH2.BITNET@ALBANY.EDU . 3. You may dial up one of the Fidonet coordinators listed below and leave a message (to "SYSOP") asking for a list of the Fidonet BBSs nearest you (mention your city and state/province). ZONE 1 NORTH AMERICA Calif-Nevada, Tustin CA 1-714-838-6539 Central United States, Columbus OH 1-614-841-0355 Eastern Canada, Ottawa ON 1-613-723-5711 Mid-Atlantic, Fairfax VA 1-703-323-7654 Mid-West, Joplin MO 1-417-673-2283 AZ-CO-NM-UT-WY, Phoenix AZ 1-602-894-8762 New England, Danbury CT 1-203-791-8532 North-West, Vancouver BC 1-604-266-1977 SouthEast/Caribbean, Titusville FL 1-407-383-1372 TX-AR-OK-LA, Houston TX 1-713-496-6319 ZONE 2 EUROPE & MIDDLE EAST Sweden 46-36-121323 Oslo, Norway 47-2-221064 Espoo, Finland 358-0-881562 Denmark 45-32-961764 Hamm, Germany 49-2381-460077 Hastings, United Kingdom 44-424-853361 Ireland 353-402-35308 Pfaffenthal, Luxembourg 352-42-0201 Netherlands 31-75-217873 Schoten, Belgium 32-3-6851123 Aarau, Switzerland 41-64-230319 Vienna, Austria 43-1-8154873 France 33-75676164 Genova, Italy 39-10-3770080 Barcelona, Spain 34-3-2193452 Varna, Bulgaria 359-52-259108 Lisboa, Portugal 351-1-8520478 Hungary 36-56-422-189 Koper, Slovenia 38-66-34986 Iceland 354-2-14626 Kfar Saba, Israel 972-52-914-618 Thessaloniki, Greece 30-31-237763 Czech Republic & Slovak Republic 42-184-3893 Turkiye 90-1-2572790 Tbilisi, Georgia 7-8832-293581 Minsk, Belarus 7-0172-706000 Kharkov, Ukraine and Moldova 7-0572-305216 Lithuania 370-7-798430 Riga, Latvia 371-2-223986 Warszawa, Poland 48-22-410374 Tallinn Estonia 372-2-433023 Moscow, Russia 7-095-329-2192 ZONE 3 OCEANIA Melbourne, Vic, Australia 61-3-792-3507 Inglewood, South Australia 61-8-380-5505 Sandgate, Qld, Australia 61-7-269-6355 Perth, Western Australia 61-9-257-1309 Christchurch, New Zealand 64-3-383-1155 ZONE 4 AMERICA LATINA Brazil 55-71-244-8764 Uruguay 598-2-486616 Chile 56-2-279-6767 Argentina 54-1-544-6241 Panama City, Panama 507-23-9669 Monterrey NL, Mexico 52-83-56-4119 ZONE 5 AFRICA Gaborone, Botswana 267-373461 Johannesburg, South Africa 27-171-84102 Harare, Zimbabwe 263-4-738692 Nairobi, Kenya 254-2-567043 Addis Ababa, Ethiopia 251-1-514412 Lusaka, Zambia 260-1-252892 Dakar, Senegal 221-21-7627 Tunis, Tunisia 216-1-70-1827 ZONE 6 ASIA Singapore 65-2410418 Kowloon, Hong Kong 852-789-1267 Tainan, Taiwan 886-6-275-3162 Sagamihara, Japan 81-427-77-0847 Quezon City, Philippines 63-2-712-0329 Anjung-Ri, Korea 82-333-691-1602 beacon.mit.edu resources can be found online on all networks, including Internet, Usenet, BBSs, Fidonet, America Online, Compuserve, Prodigy, GEnie, and Free-nets. Archive-name: medicine/chronic-fatigue-syndrome/cfs-electronic-resources Last-updated: 1994/10/1 CFS / ME ELECTRONIC RESOURCES The CFS/ME Computer Networking Project "A Guide to the Many Information Resources Available via Computer for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis" ----------------------- Second Edition: October 1, 1994 ____________________________ CONTENTS *** INTRODUCTION *** 1. CFS/ME Information and Networking 2. The CFS/ME Computer Networking Project *** USING A COMPUTER *** 3. Buying a computer 4. Reaching the networks with your computer *** ELECTRONIC RESOURCES *** 5. News sources A. News sources. B. Easy access to news sources. C. Self-service access to news sources and other Internet services. 6. Physicians' discussion group 7. CFS/ME electronic discussion and support A. Fidonet conference B. Commercial services America Online CompuServe GEnie Prodigy C. Internet D. Usenet E. Free-Nets 8. Information files A. BBSs B. Commercial networks C. Internet *** FURTHER INFORMATION *** 9. For further information 10. Credits and copyright notice ------------------------------------------------------------- The printing and distribution of this edition of "CFS/ME Electronic Resources" is made possible through a grant from the CFIDS Buyers Club (800-366-6056). Design contributed by Matt Straznitskas of BrainBUG Graphics. ------------------------------------------------------------- ================== INTRODUCTION ================== 1. CFS/ME information and networking A growing number of CFS/CFIDS/ME patients, support groups, and doctors are exchanging news and information rapidly on computer networks. The following CFS/ME-related services are available: * NEWS SOURCES -- Support groups and other organizations exchange news articles via electronic mail. One advantage to this exchange is that when support groups want to reprint an article in their newsletter, it won't need to be retyped. * DISCUSSION GROUPS -- Many individual CFS/ME patients participate in general discussion groups on the computer networks and on Bulletin Board Systems (BBSs). Much information and support are exchanged. These discussions, which are an excellent resource for those who are homebound or otherwise unable to attend support group meetings, take place on many networks, several of which are accessible at no charge. * INFORMATION FILES -- There are information files available containing articles from medical journals and previous editions of the CFIDS Chronicle, documents from NIH, advice on coping, disability, Social Security, etc. This document lists where in the electronic world these resources can be found, and how to find or sign up for the various systems that have them. Please remember that most of the news and information that appears on the computer networks is the result of important efforts made by our national and local support organizations. If we want to hear good news, and help to create it, we must support and participate in the organizations that are working to help us. Please join and sustain your support and advocacy organizations. 2. The CFS/ME Computer Networking Project The CFS/ME Computer Networking Project (referred to in this document as the Project) is comprised of patient volunteers who are the CFS section leaders from major computer networks. They assist in exchanging news and information on computer networks, and offer help in finding electronic CFS/ME resources on these networks. They established and operate the CFS Newswire service (see Section 5 which follows). The Project's current members are: Roger Burns (Internet); Lucie Dorais (GEnie); Maryka Ford (Prodigy); Molly Holzschlag (Project founder); Ed Isenberg (CompuServe); and Sandy Shaw (Fidonet). The Project's postal addresses are listed in Section 10. It can be contacted on Internet at cfs-me@sjuvm.stjohns.edu and by Fido netmail at CFS-ME at 1:163/221. ============== USING A COMPUTER ============== 3. Buying a computer There are many things you should know about before buying a computer. This guide cannot present all of the advice you should have about computer purchases, so we suggest that you read a beginner's book such as "Your First Computer" by Alan Simpson (Sybex publishers, tel. (800) 227-2346 or 1-510-523-8233). Study up and be prepared to put good questions to your computer salesmen before making your purchase. Important questions to consider are: should you buy a PC (i.e., an IBM compatible) or a Mac? (factors being price, ease of use, compatibility with systems at your work place); storage needs ("hard disk" size, choose a size that is bigger than you think you'll need at first); peripheral hardware (modem, video, printer); and software (programs which enable the computer to do specific tasks). To access the electronic resources featured in this guide, you must have at least a modem and some communication software (discussed in the next section). You'll probably need more advice after you've made your purchase. There are excellent books on most hardware and software. It will also be extremely useful to get advice from experienced fellow computer owners. To find local PC users' groups, phone the automated information system at 1-914-876-6678. For Mac users' groups, USA residents can phone (800) 538-9696. 4. Reaching the networks with your computer To reach the various network information resources and discussion groups, your computer will need a device called a "modem", which translates computer data into signals which can be transmitted through phone lines to other computers, and "communications software", which enables your computer to operate the modem. Some advice on purchasing: a 14,400 baud modem is currently the best buy for your money. The higher rates a commercial network might charge are more than offset by the much faster rate at which the modem operates, therefore saving you money. If you use one of the commercial networks (see section 7-B which follows), they offer communications software that allow you to reach them more efficiently. For general communications software which can access most systems, including local BBSs, some popular brands are Procomm Plus and Cross Talk. ============== ELECTRONIC RESOURCES ============== 5. News services A. News sources. The CFS Newswire service of the CFS/ME Computer Networking Project enables support groups and others to exchange news articles and other newsworthy material for use in composing CFS/ME newsletters. News material intended for distribution is electronically submitted to the Newswire editors for review and prospective release. The Newswire is based on the Internet, the overall network which connects most other computer networks together. It is thus accessible from America Online, CompuServe, Free-Net, GEnie, MCI- MAIL, Prodigy and other services. See subsections B and C immediately below for instructions on how to get the Project's Newswire service. There is also an informal "newswire" procedure on the Fidonet no-cost network of BBSs. Anyone can post material to Fidonet's CFS "echo" (or conference) with the subject heading of NEWSWIRE, and that material will be posted to all of the 100+ BBSs that carry the CFS "echo". The Project will exchange messages between the informal Fidonet newswire and the Project's Internet-based Newswire. However, only those items that have been accepted by the Project's review procedure will be distributed on the Project's Internet-based Newswire. For a description of the Fidonet CFS "echo", see section 7-A which follows. The CFS-NEWS Electronic Newsletter provides current medical research updates and other news for the CFS community. It is published at least once every calendar month. The newsletter is posted to the CFS "echo" on Fidonet, and is also available as USENET newsgroup bit.listserv.cfs.newsletter although this may change soon (for current information, contact the editor listed below.) On Internet it is available as listname CFS-NEWS at Listserv nodename LIST.NIH.GOV. For instructions on getting CFS-NEWS through the Internet, see section 5-C which follows or send an e-mail inquiry to editor Roger Burns at address CFS-NEWS@LIST.NIH.GOV. For access to the Internet, see section 7-C which follows (and note that the commercial services described in section 7-B can access Internet). The newsletter is on file on the Project ENABLE BBS, tel. 1-304-759-0727, file area 23. Back issues are also available on Internet (contact the editor) and on CompuServe and GEnie. "Catharsis" is a CFS electronic newsmagazine which focuses on personal health, intellect and creativity for the CFS community. The magazine is posted to the CFS "echo" on Fidonet. On Internet it is available as listname CATHAR-M at Listserv nodename SJUVM.STJOHNS.EDU. For instructions on getting Catharsis through the Internet, see subsection C which follows or send an e-mail inquiry to the editor listed below. The newsletter is on file on the MEDBASE/CFS Tucson BBS at 1-602-790-7420. Back issues are also available on Internet and on CompuServe and GEnie. For inquiries, contact editor Molly Holzschlag via Internet at CATHAR-M@SJUVM.STJOHNS.EDU or by postal mail at the Electronic Information Exchange, PO Box 42225, Tucson, AZ 85733-2225, USA or at Fidonet Molly.Holzschlag at 1:300/23. B. Easy access to news sources. Contact the Project (see the last paragraph of Section 2 above) or any CFS section leader listed in the service descriptions in Section 7 which follows. They can arrange for you to get the requested service. C. Self-service access to news sources and other Internet services. Aside from the "easy" method described above, the more adventurous may arrange to obtain these resources by themselves by using the following instructions. (These instructions are for the Newswire and other message-based services. For information files, see Section 8 which follows.) Access through the no- cost Fidonet network is described in section 7-A (newswires are posted as messages to the CFS "echo" discussion group). Because there are several Internet-based services described in this document, this subsection will serve as a general reference for how to obtain Internet services, using the CFS Newswire as an example. Remember that the CFS Newswire service and most other CFS/ME resources on Internet can also be reached from most of the many computer services described in Section 7 which follows. Check with your service's support staff for specific guidance on how to send Internet mail. There is an automated procedure on Internet called "Listserv" which will enable you to get on the mailing list for the Newswire, or for other Internet services. If you send a "subscribe" command to a Listserv address by e- mail, the Listserv will sign you up for the service you designate in the command, as explained below. The word "subscribe" merely refers to adding one's address to a mailing list. There is no extra cost for using Listserv-based services other than the use of e-mail. In order to subscribe to a service or discussion group via Listserv, you must know the service's "listname" and its "Listserv nodename". (These names are shown throughout this document.) Use Internet electronic mail to create a message which has the following general form: SUB listname YourFirstName YourLastName and send it to the Internet address which has the general form LISTSERV@ . For example, suppose Ms. Sally Forth wishes to sign up for the CFS Newswire service. The listname for the CFS Newswire is CFS- WIRE and its Listserv nodename is SJUVM.STJOHNS.EDU. Ms. Forth should create an e-mail message which says SUB CFS-WIRE Sally Forth and send it to the address LISTSERV@SJUVM.STJOHNS.EDU . Instructions about how to submit material for posting will then automatically be sent, as will all future Newswire postings. Be sure that the subscription message is typed precisely and with no other written text, since it is being sent to a machine which will only respond to the correct command words and will be confused by any other material. Other CFS/ME services are also available on Internet including the CFS- NEWS electronic newsletter, the "Catharsis" newsmagazine, the CFS-L discussion group and more. As a second example, if Mr. John Doze wishes to sign up for the CFS-L discussion group, which is based at Listserv nodename LIST.NIH.GOV, he should send the e-mail message SUB CFS-L John Doze to the Internet address LISTSERV@LIST.NIH.GOV . Again, if there is some difficulty, contact any CFS section leader as shown throughout Section 7 below to have these arrangements made for you. To obtain a general help file about how to use Internet and Listserv, send the command GET CFS NET-HELP as an e-mail message to the Internet address LISTSERV@SJUVM.STJOHNS.EDU. 6. Physicians' discussion group A discussion group for medical doctors and other health professionals will begin in October 1994. It will be accessible through the Internet, and through the many computer services which have Internet e-mail (see section 7-C below). To subscribe to the group, contact the group's moderator Roger Burns at Internet address CFS-MED@LIST.NIH.GOV. Or to sign up directly, send a message which says SUB CFS-MED YourFirstName YourLastName as an e-mail message to the Internet address LISTSERV@LIST.NIH.GOV. For further help, read the sign-up example in section 5-C above, using listname CFS-MED and nodename LIST.NIH.GOV. Or again, contact the moderator at address CFS-MED@LIST.NIH.GOV. 7. CFS/ME electronic discussion and support CFS/ME network discussion groups are more than just a way to exchange the most up to date information on research, advocacy and treatment. Close friendships often develop between people who share tips on coping and provide sympathy and understanding at any hour of the day or night. These electronic support groups are a valuable resource to many who are housebound or who have no local support group to attend. A. Fidonet conference. Fidonet is a volunteer, world-wide network of over 20,000 personal computer BBSs which can be accessed by anyone with a personal computer and a modem. The CFS "echo" (i.e., discussion group) can be reached at any of the 200 BBSs shown on the accompanying tables. The vast majority of these BBSs are accessible free of charge. However, Fidonet messages take a day or two for distribution, rather than mere minutes as on the commercial networks and the Internet. For advice or assistance, post a message to the conference for moderator Sandy Shaw or send him Fido Netmail at 1:163/221 or Internet e-mail at aa328@freenet.carleton.ca. If none of the BBSs shown on the table are near you, then you should find a Fidonet BBS in your community and request of the operator that their BBS carry the CFS "echo". To do this: (1) Find Fidonet BBSs near you by asking your local computer retailer or computer users' group. Alternatively, you may obtain the file named FIDONETS.TXT which lists net coordinators throughout the world, and search it for cities or phone numbers near you. Then login to their BBS and ask for a list of local Fidonet BBSs. To get this FIDONETS.TXT file, dial into the Project ENABLE BBS at tel. 1-304-759-0727 (West Virginia, USA), and download it from file area 23. Commercial services may have this file in their file library. Then (2) call several Fidonet BBSs and leave a message for SYSOP, requesting that they carry the CFS "echo". Mention that the CFS "echo" is "on the Fidonet backbone" (that's sysop jargon, and means that it's easy to get). Internet users will soon be able to access the CFS "echo" by telnetting into the Project ENABLE BBS at node enable.wvnet.edu. To reach the CFS "echo" on this BBS, use the "Join" command to enter conference number 101. The accompanying table shows those BBSs which have recently carried the conference. If the CFS conference cannot be found among the "echo" conferences on one of these BBSs, leave a message on the BBS addressed to the name SYSOP and ask that the CFS "echo" be carried. This table is occasionally updated and the latest version can be found on the Project ENABLE BBS at tel. 1-304-759-0727, file area 23, filename CFS-BBS.TXT. CFS CONFERENCE BBS LIST as of September 20, 1994 === AUSTRALIA === || Jacksonville FL 1-904-727- 7794 || Jacksonville FL 1-904-292- 3904 St. Ives NSW 61-2-440-8364 || Jacksonville FL 1-904-246- 1481 Stanmore NSW 61-2-569-5130 || Mount Dora FL 1-904-383- 7841 Fitzroy VIC 61-3-417-2440 || DeLand FL 1-904-738- 3858 Victoria VIC 61-3-591-0020 || Eustis FL 1-904-483- 2463 N. Bayswater VIC 61-3-739-0028 || St. Augustine FL 1-904-823- 0947 Frankston VIC 61-3-783-1275 || Forest Park GA 1-404-363- 0194 Wantirna South VIC 61-3-887-1485 || Martinez GA 1-706-860- 5070 Perth WA 61-9-244-2111 || Des Moines IA 1-515-288- 7793 || Pekin IL 1-309-346- 6829 === BRITAIN === || Peoria IL 1-309-697- 1011 || Chicago IL 1-312-736- 7434 úÿ úÿ(Continued from last message) Fleet UK 44-252-626233 || Rockford IL 1-815-654- 7956 London UK 44-81-595-1921 || Ottawa IL 1-815-433- 6959 || Whiting IN 1-219-659- 0112 === CANADA === || Atlanta GA 1-404-368- 1132 || Kansas City KS 1-913-642- 7907 Calgary AB 1-403-245-5942 || Lexington KY 1-606-273- 3716 Calgary AB 1-403-251-5540 || New Orleans LA 1-504-486- 7249 Calgary AB 1-403-299-9925 || Sun LA 1-504-886- 2157 Calgary AB 1-403-286-7545 || Framingham MA 1-508-872- 8461 Edmonton AB 1-403-466-7613 || Danvers MA 1-508-750- 0250 Abbotsford BC 1-604-436-3271 || Marlborough MA 1-508-481- 7147 N. Vancouver BC 1-604-986-8791 || Boston MA 1-617-739- 9246 Nanaimo BC 1-604-753-9137 || Boston MA 1-617-767- 2909 Prince George BC 1-604-564-5564 || Boston MA 1-617-783- 8820 Richmond BC 1-604-224-7456 || Rockville MD 1-301-946- 3070 Richmond BC 1-604-272-5888 || Silver Spring MD 1-301-439- 7437 Surrey BC 1-604-599-3885 || Silver Spring MD 1-301-585- 5680 Vancouver BC 1-604-266-1977 || Silver Spring MD 1-301-949- 5764 Portage la Pr. MB 1-204-857-5927 || Salisbury MD 1-410-543- 2406 Winnipeg MB 1-204-233-0227 || Marysville MI 1-313-364- 4162 Winnipeg MB 1-204-338-3423 || Troy MI 1-313-435- 4544 Winnipeg MB 1-204-831-5375 || Mt. Clemens MI 1-313-468- 0912 Grimsby ON 1-416-945-6131 || Southgate MI 1-313-284- 3548 Pickering ON 1-416-831-6102 || Sterling Hts MI 1-313-795- 5829 Toronto ON 1-416-465-7436 || Warren MI 1-313-774- 5038 Toronto ON 1-416-466-8931 || Waterford MI 1-313-623- 6314 Toronto ON 1-416-604-1221 || Saginaw MI 1-517-752- 3203 Toronto ON 1-416-650-5411 || Grand Ledge MI 1-517-627- 4461 Toronto ON 1-416-798-4713 || Grand Rapids MI 1-616-361- 2268 Belleville ON 1-613-962-1359 || Andover MN 1-612-753- 1943 Gloucester ON 1-613-746-5293 || Jefferson City MO 1-314-893- 6099 Lynden ON 1-519-647-3595 || Kansas City MO 1-816-561- 3650 North York ON 1-416-650-6232 || Kansas City MO 1-816-763- 3353 Kitchener ON 1-519-744-6266 || Kansas City MO 1-816-587- 3971 Stratford ON 1-519-273-5607 || Kansas City MO 1-816-763- 3353 St. Thomas ON 1-519-633-7253 || Jackson MS 1-601-372- 6998 Ottawa ON 1-613-837-5473 || Charlotte NC 1-704-873- 2058 Ottawa ON 1-613-749-4550 || Fair Lawn NJ 1-201-796- 2752 Ottawa ON 1-613-747-7665 || Little Falls NJ 1-201-812- 9352 Ottawa ON 1-613-737-0966 || Elizabeth NJ 1-908-289- 3981 Ottawa ON 1-613-669-0617 || Albuquerque NM 1-505-823- 7700 Ottawa ON 1-613-521-3690 || Long Island NY 1-516-736- 6810 Trenton ON 1-613-394-5919 || Albany NY 1-518-462- 6134 Thunder Bay ON 1-807-345-7248 || Ballston Spa NY 1-518-885- 4192 Gatineau QC 1-819-246-8538 || Churchville NY 1-716-293- 2692 Moose Jaw SA 1-306-692-6765 || Buffalo NY 1-716-688- 1552 || Rochester NY 1-716-594- 1222 === USA === || Marlboro NY 1-914-236- 3265 || Poughkeepsie NY 1-914-473- 1697 Birmingham AL 1-205-254-3344 || Oklahoma City OK 1-405-745- 5117 Montgomery AL 1-205-264-8000 || Broken Arrow OK 1-918-455- 5806 Montgomery AL 1-205-244-0296 || Rocky River OH 1-216-356- 1772 Pinson AL 1-205-254-6050 || Kent OH 1-216-677- 3437 Little Rock AR 1-501-227-9600 || Wooster OH 1-216-345- 6995 Little Rock AR 1-501-224-1605 || Beavercreek OH 1-513-427- 9473 N. Little Rock AR 1-501-753-8575 || Miamisburg OH 1-513-435- 1163 Kingman AZ 1-602-757-0385 || Cincinnati OH 1-513-921- 7623 Hereford AZ 1-602-378-3375 || Columbus OH 1-614-268- 8050 Tucson AZ 1-602-571-9063 || Tigard OR 1-503-620- 0307 Tucson AZ 1-602-741-7851 || Madras OR 1-503-475- 3056 Clovis CA 1-209-292-3530 || Hatboro PA 1-215-638- 2334 Manteca CA 1-209-823-0854 || Philadelphia PA 1-215-464- 9068 Los Angeles CA 1-213-766-1356 || Philadelphia PA 1-215-676- 3618 Los Angeles CA 1-310-372-0987 || Philadelphia PA 1-215-755- 1917 Berkeley CA 1-510-836-4717 || Yardley PA 1-215-493- 5242 Adelanto CA 1-619-246-5166 || Pittsburgh PA 1-412-621- 4604 San Diego CA 1-619-535-9580 || Harmony PA 1-412-452- 8306 San Diego CA 1-619-546-1536 || Lancaster PA 1-717-393- 9966 La Mesa CA 1-619-697-8873 || Cranston RI 1-401-943- 0835 Santa Rosa CA 1-707-576-0397 || York PA 1-717-845- 2725 Anaheim CA 1-714-952-2110 || Franklin PA 1-814-437- 5647 Tujunga CA 1-818-352-2993 || Dalzell SC 1-803-469- 2018 Tujunga CA 1-818-353-8891 || Ladson SC 1-803-873- 5797 Sacramento CA 1-916-685-2368 || San Antonio TX 1-210-674- 1242 Citrus Heights CA 1-916-729-2968 || New Braunfels TX 1-210-606- 1754 Roseville CA 1-916-781-2092 || Dallas TX 1-214-790- 6472 Westminster CO 1-303-650-7732 || Dallas TX 1-214-238- 0928 Pueblo CO 1-719-545-8572 || Dallas TX 1-214-528- 1816 Ansonia CT 1-203-735-5619 || Austin TX 1-512-453- 5079 Shelton CT 1-203-926-6168 || Cannelview TX 1-713-452- 2114 Wethersfield CT 1-203-257-9906 || Houston TX 1-713-451- 6066 Wethersfield CT 1-203-721-0706 || Houston TX 1-713-640- 1298 Newark DE 1-302-994-3772 || Houston TX 1-713-526- 4528 Wilmington DE 1-302-529-1650 || Burleson TX 1-817-447- 1619 Sunrise FL 1-305-572-7060 || Bedford TX 1-817-498- 2344 Miami FL 1-305-271-2146 || El Paso TX 1-915-594- 7806 Melbourne FL 1-407-255-9948 || Virginia Beach VA 1-804-496- 3320 Orlando FL 1-407-299-4762 || Lacey WA 1-206-493- 0798 Orlando FL 1-407-298-5830 || Longview WA 1-206-578- 1157 Orlando FL 1-407-381-2798 || Longview WA 1-206-578- 1948 West Melbourne FL 1-407-728-5548 || Seattle WA 1-206-767- 7681 Audubon FL 1-407-459-0969 || Milwaukee WI 1-414-761- 2582 Tampa Bay FL 1-813-961-6242 || Cross Lanes WV 1-304-759- 0727 Sarasota FL 1-813-377-1470 || B. Commercial networks. These networks have broad-based CFS discussion groups that offer quick responses, as well as many informational files and occasional live chats. The cost of reading messages can be minimized by using "off- line readers". Ask the service contact people listed for each network below for advice about these utilities. America Online has a CFS discussion area, an information file section and a weekly live chat. One of the CFS messaging areas can be found by going to the Better Health & Medical Forum, section on Organizations and disABILITIES (keyword: disabilities), and go to the General Discussions/Chronic Fatigue Syndrome. For further assistance and general information, contact Mary Dee Harris by e-mail at address MDHarris. CompuServe has a CFS/CFIDS/FMS/ME section in its Health & Fitness Forum (enter GO GOODHEALTH). Discussions occur in message section 16, information files are in Library 16, and there are regular real-time conferences. For further assistance and general information, contact CFS section leader Ed Isenberg by e-mail at address 72303,1236. GEnie has a CFS discussion and files area and a bi-monthly real-time conference. To reach the CFS discussion section within the disAbilities Round Table, type M970;1 and then Set CATegory 18. To reach the CFS library, type M970:3, then Set CATegory 11. For further assistance and general information, contact CFS section leader Lucie Dorais by e-mail at address L.DORAIS. Prodigy computer service has an CFS/ME discussion group and informal live chat sessions. To reach the CFS section, choose [JUMP] and type Medical Support BB, and then select the topic Chronic Fatigue Syndrome. Although there is no formal library section, detailed information is re-posted regularly. For further assistance and general information, contact CFS section leader Maryka Ford by e-mail at ID ANSU44B. COSTS. The chart below is intended only for making rough comparisons between the different pricing schemes available for the various commercial services. Each plan has special aspects that are not shown on this chart. There may be extra charges for special features, the communications link, non-USA access, or using higher baud rates. Costs and available features are subject to change. Get current, accurate and complete information by contacting each network office directly. Comparative prices for USA subscribers -------------------------------------- Service Monthly Hourly Sign up phone ---------------- ------- ------- ------------- America OnLine $9.95 $3.50 800-827-6364 after 5 hrs free CompuServe - Alt 2.50 12.80 800-848-8199 CompuServe - Std 8.95 4.80 800-848-8199 GEnie 8.95 3.00 800-638-9636 off-peak after 4 hrs free Prodigy 7.95 1.20 800-776-3449 after 5 hrs free NOTICE: CompuServe: there are two basic plans (Alternative and Standard), examples shown are 2400 baud access, for overseas information call 1-614-457-0802 (Ohio, USA) or call toll-free in Australia 008025240, U.K. 0800289378, Germany 01303732 or France 36638122 / GENie peak hours are Mon-Fri 8am-6pm local time / Prodigy is available in the USA and service to Canada is being tested (ask for special offer), $7.95 is cheapest of four plans, discount rate of $1.20 per hour plus five hours free is available only while in the Medical Support Board (where the CFS section is). C. Internet. The Internet is the name for the rapid communications network which uses electronic mail and other services to link most mainframe computers around the world. Almost all CFS/ME resources on Internet can be obtained through electronic mail. They are thus accessible through all of the commercial services shown above, and other services listed below, of which many are low-cost or free. The various means of access are described further below. To obtain a general help file about how to use Internet and Listserv, send the command GET CFS NET-HELP as an e-mail message to the Internet address LISTSERV@SJUVM.STJOHNS.EDU. For personal assistance about CFS resource on Internet, contact Roger Burns at Internet address CFS-NEWS@LIST.NIH.GOV. CFS-L discussion group. This patients' discussion group is available through Internet e-mail. To join the group, contact the group's moderator Roger Burns at Internet address CFS-L-REQUEST@LIST.NIH.GOV. Or to sign up directly, see the second example described in section 5-C above. Other e-mail services. There are many other services based on Internet e-mail: CFS-WIRE, CFS-NEWS, and Catharsis magazine (described in Section 5 above); the CFS-MED physicians' group (described in Section 6 above); the CFIDS-L activist discussion (for information, contact Roger Burns at CFIDS-L-REQUEST@AMERICAN.EDU); and the CFS-FILE and CFS-D information file resources (described in Section 8-C which follows). Full service Internet. There are many high tech services available on Internet in addition to e-mail and many of these services can access CFS information. Some full service Internet accounts may be expensive, so inquire about costs. Some intermediate level services are accessible on lower cost systems such as some public unix nodes (see subsection D which follows) and on Free-Nets (see subsection E). A good reference to Internet services is the book by Gilster (described further in subsection D which follows). To see a list of CFS resources available via Internet gopher, ftp, telnet and WWW, get the CFS NET-HELP file mentioned above. Access to Internet. There are many ways to reach the Internet, some very expensive and others absolutely free. Many businesses, universities and government offices give Internet access to their employees (usually electronic mail). The commercial networks described above, and other systems, include Internet access as part of their services. Most commercial networks levy an additional charge for exchanging messages with the Internet. Ask the network contact people listed in section 7-C about ways to minimize these costs. MCI-MAIL charges $35 (USA) per year and offers unlimited incoming Internet e-mail at no extra charge. Thus this service is excellent for receiving CFS-WIRE, CFS-NEWS and Catharsis magazine, and monitoring the CFS-L discussion group. However, outgoing messages are expensive. For sign-up information, in the USA call (800) 444-6245. For service outside of North America call 1-202-833-8484 in Washington, DC or in the UK call 44-71-9281232 or in Germany call 49-89-4313071. Free-nets give access to almost all Internet CFS resources by e-mail and they are usually free. See subsection E which follows. Delphi and Holonet provide full Internet access to North America. For information, call Delphi at (800) 695-4005 and Holonet at 1-510-704-0160 (California). There are also many local providers of Internet services. See the references in subsection D below. D. Usenet. The Usenet network provides thousands of electronic discussion groups on many topics. Usenet discussion groups are called "newsgroups". They are accessible on many BBSs, mainframe computers and increasingly on the larger Internet e-mail discussion group, i.e. the two share their messages automatically. The CFS-NEWS newsletter appears on newsgroup "bit.listserv.cfs.newsletter". Note that these newsgroup names may soon change. For the latest information and advice, contact Roger Burns at address CFS-NEWS@LIST.NIH.GOV or post a message to any of the newsgroups listed above. The CFS Newswire and Catharsis magazine will soon be distributed on Usenet as well. The system of Free-Nets gives access to Usenet. Although not every Free- Net gives direct access, from any Free-Net it is possible to log into the National Capital (Ottawa) or Buffalo Free-Nets which do provide newsgroups. See subsection E below regarding Free-Nets. Many local BBSs and Internet providers give access to Usenet. There are many books available about the Internet, and several of them list the hundred or so local providers of Internet and Usenet access. One such book is "The Internet Navigator" by Paul Gilster. There are several electronic files which list Internet providers. Filenames NIXPUB.SHT, NIXPUB.LNG and PDIAL.TXT are available on the Project ENABLE BBS, tel. 1-304-759-0727, file area 23. America Online and CompuServe (subsection B above) provide access to newsgroups, and other major commercial services may also do so in the future. E. Free-Nets are non-profit systems in various cities that offer free access to Internet e-mail, Usenet newsgroups, and other services. (A few systems charge a nominal fee.) With the given Internet and Usenet access, users can reach any of the news, discussion and information services described in sections 5, 7-C and 7-D above and in section 8-C which follows. Volunteers set up their own information sections on local Free-Nets. Those who log into any one Free-Net can access all of the others. For example, from any of the Free-Nets you can access the CFS/ME section on the National Capital Free-Net (NCF) in Ottawa. Once inside NCF, enter the command GO CFSEIR to get to the CFS/ME section. For the advice and assistance, contact Sandy Shaw on the NCF Free-Net at Internet address aa328@freenet.carleton.ca, or post a message for Sandy on the Fido CFS "echo" (see section 7-A above). Current Free-Nets (FNs) now operating are as follows: Name Location Dial-in login info ------------- ------------ -------------- ----------- Los Angeles FN Los Angeles CA 1-818-776-5000 Select #2 at first menu Denver FN Denver CO 1-303-270-4865 login: guest CapAccess Washington DC 1-202-785-1523 login: guest password: visitor SEFLIN FN Broward County FL 1-305-765-4332 login: visitor Tallahassee FN Tallahassee FL 1-904-488-5056 login: visitor Prairienet Champaign-Urbana IL 1-217-255-9000 login: visitor Heartland FN Peoria IL 1-309-674-1100 login: bbguest UMASSK12 Amherst MA 1-413-572-5583 login: guest Great Lakes FN Battle Creek MI 1-616-969-4536 login: visitor Educ. Central Mt. Pleasant MI 1-517-774-3790 login: visitor COIN Columbia MO 1-314-884-7000 login: guest ORION Springfield MO 1-417-864-6100 login: guest Big Sky Telegraph Dillon MT 1-406-683-7680 login: bbs Buffalo FN Buffalo NY 1-716-645-6128 login: freeport SENDIT Fargo ND 1-701-237-3283 login: bbs password: sendit2me Tri-State Online Cincinnati OH 1-513-579-1990 login: visitor Cleveland FN Cleveland OH 1-216-368-3888 login: Select #2 at first menu Learning Village Cleveland OH 1-216-247-6196 login: visitor Gtr Columbus FN Columbus OH 1-614-292-7501 login: guest Dayton FN Dayton OH 1-513-229-4373 login: visitor Lorain County FN Elyria OH 1-216-366-9721 login: guest Youngstown FN Youngstown OH 1-216-742-3072 login: visitor Medina County FN Medina OH 1-216-723-6732 Ocean State FN Providence RI 1-401-831-4640 Rio Grande FN El Paso TX 1-915-775-5600 login: visitor Seattle Comm. Net. Seattle WA 1-206-386-4140 login: visitor Tri-Cities FN Tri-Cities WA 1-509-375-1111 Vancouver FN Vancouver BC 1-604-222-4723 CIAO! FN Trail BC 1-604-368-5764 login: guest Victoria FN Victoria BC 1-604-595-2300 login: guest National Capital FN Ottawa ON 1-613-780-3733 Chubucto FN Halifax NS 1-904-494-8006 Finland FN Helsinki FI 358-929292 login: visitor FN Erlangen-Nuernburg DE 49-9131-85-8111 login: gast Citynet Wellington NZ write to Computer Services Wellington City Council P.O. Box 2199, Wellington, NZ Many new Free-Nets are being developed. For the latest information on available Free-Nets, dial into tel. 1-216-247-6196 (Ohio), login as "visitor" and search for "NPTN" information. 8. Information files There are information files available on most of the networks and on many BBSs. They include medical articles, articles from previous editions of the CFIDS úÿ úÿ(Continued from last message) Chronicle, documents from NIH, advice on coping, disability, Social Security issues, etc. A. BBSs. Certain BBSs have special sections or are devoted entirely to carrying many helpful information files on CFS/ME. Note the following: Cross Lanes, West Virginia 1-304-759-0727 Tucson, Arizona 1-602-790-7420 Smithtown, New York 1-516-736-6810 Los Angeles, California 1-213-766-1356 Kansas City, Kansas 1-913-642-7907 Ottawa, Illinois 1-815-433-6959 Newport, Delaware 1-302-994-3772 Irvine, California 1-714-856-7996 Ottawa, Ontario CANADA 1-613-521-3690 Fleet, BRITAIN 44-252-626233 Apeldoorn, NETHERLANDS 31-55-337951 Sydney, AUSTRALIA 61-2-673-3559 The CFS-NEWS Electronic Newsletter can be found on most of the BBSs shown above. The CFS Newswire is carried by the CFS/ME/FMS BBS of Long Island (New York, tel. 1-516-736-6810) and the Shrine of the Cybernetic Madonna BBS (Los Angeles, tel. 1-213-766-1356). Back issues of the CFIDS Chronicle can be found on the MEDBASE CFS BBS (Arizona, tel. 1-602-790-7420). Publications of the (USA) National CFS & Fibromyalgia Association can be found on the South of the River BBS (Kansas City, tel. 1-913-642-7907, file group 2, area 26). B. The commercial networks also carry many CFS information files, notably America Online, CompuServe and GEnie. See the references to these file sections in the network descriptions that appear in section 7-B above. C. Internet has CFS/ME information files, available for retrieval by e- mail. (For Internet access, see section 7-C above.) The CFS-FILE database is the original source for electronic copies of the CFIDS Chronicle, the HealthWatch Newsletter (published by the CFIDS Buyers Club), the newsletter of the Canada ME/Fibromyalgia Action Network, and Catharsis magazine, in addition to the many standard medical articles, advice on disability, etc. To obtain a list of all available files, create an e-mail message which says GET CFS-FILE FILELIST and send it to the Internet address LISTSERV@SJUVM.STJOHNS.EDU. When you see files of interest, you can retrieve them by sending commands of the form GET filename1 filename2 (each file has a two-part name). For assistance, contact Molly Holzschlag at address CFS-FILE@SJUVM.STJOHNS.EDU. There is a separate base of CFS files at the Albany Listserv. This service stores back issues of CFS-NEWS and has other files associated with the Internet CFS-L discussion group. Send the message GET CFS-D FILELIST to address LISTSERV%ALBNYDH2@ALBANY.EDU and then send commands in the form of GET filename1 filename2, just as with the CFS-FILE database described above. For assistance, contact Roger Burns at address CFS-NEWS@LIST.NIH.GOV. ========== FURTHER INFORMATION ============= 9. Further information More detailed information about CFS/ME resources can be found in the CFS-RES.TXT file. The latest version of the CFS-RES.TXT file is always available at the following places. On the Internet, send the command GET CFS-RES TXT as an e-mail message to the address LISTSERV@SJUVM.STJOHNS.EDU . The file has also been uploaded as filename CFS-RES.TXT to the following: Project ENABLE BBS, tel. 1-304-759-0727, file area 23; GEnie network, Page 970, file area 11; CompuServe forum GOODHEALTH, Library 16, (filename CFSRES.TXT). An electronic copy of this guide can be downloaded as filename CFS- NET.TXT (or on CompuServe as CFSNET.TXT) at the same places shown above. Further advice may also be sought from the CFS/ME Computer Networking Project (see contact information in Section 2 above). 10. Credits and copyright notice This guide is produced by the volunteer efforts of CFS patients. We distribute it free of charge, but printing this guide does cost money. Please send in a donation so that this work can continue. Checks can be made payable to the CFS/ME Computer Networking Project and sent to our USA address of P.O. Box 11347, Washington, DC 20008 or to the Canadian address of 3332 McCarthy Road, P.O. Box 37045, Ottawa, Ontario K1V 0W0. We'd like to give thanks to those who have distributed or promoted this document and other information about CFS/ME computer networking. In particular, we wish to recognize the M.E. Association of Canada, the CFIDS Buyers Club, the CFIDS Association of America, and Matt Straznitskas for the design and lay-out of this document. Support groups and others have permission, and are encouraged, to reproduce this document for re-distribution. Individuals may get single copies by sending a stamped, self-addressed legal sized envelope to either of the addresses above. Outside of the USA or Canada, please include an International Reply Coupon which can be obtained at your post office. Copyright (c) 1994 by The CFS/ME Computer Networking Project. Permission is also granted to excerpt this document if the source, and the author (The CFS/ME Computer Networking Project), are cited. Permission is also granted to reproduce the entirety of this document unaltered. All trademarks, both marked and not marked, are the property of their respective owners. Much of the material above is derived from the CFS-RES.TXT file copyright (c) 1994 by Roger Burns and is reproduced here with permission. ---------------------------------------------------- =========================== faq_794409554@rtfm.mit.edu> as chronic fatigue syndrome (CFS), also known as myalgic encephalo- myelitis (M.E.) and chronic fatigue and immune dysfunction syndrome (CFIDS). Archive-name: medicine/chronic-fatigue-syndrome/cfs-faq In the future we may split this document into several parts, but for now this document is quite long (about 1300 lines) and you may wish to file it or print it out. The CFS FAQ C O N T E N T S Part 0: Administrivia 0.00 Copyright 0,01 Introduction 0.02 Disclaimer 0.03 Further information 0.04 Development of this FAQ 0.05 Credits Part 1: General 1.01 What is CFS? 1.02 What causes CFS? 1.03 Is CFS a "real" disease? 1.04 Who gets CFS? 1.05 Shouldn't this illness have a better name? Part 2: Medical issues 2.01 How do I find good medical care for CFS? 2.02 What symptoms are used to diagnose CFS? 2.03 What are the specific treatments available for CFS? 2.04 What is the role of stress in CFS? 2.05 What research is currently going on? 2.06 How does CFS usually begin? 2.07 How long can CFS last? 2.08 Is CFS contagious? 2.09 Is CFS genetic? 2.10 Do people die from CFS? 2.11 Is CFS related to depression? 2.12 Is CFS related to AIDS? 2.13 Does CFS increase the likelihood of cancer? 2.14 How does CFS affect children? 2.15 How does CFS relate to pregnancy? 2.16 How does CFS relate to other similar illnesses (such as fibromyalgia, multiple chemical sensitivities, Gulf War syndrome, Lyme disease, candida, etc.)? Part 3: Life problems created by CFS 3.01 How does one live with CFS? 3.02 How do I find support groups? Part 4: Income security: Job and/or disability benefits 4.01 How do I handle problems about my job? 4.02 What problems do I face in seeking disability benefits? Part 5: CFS information resources 5.01 What other FAQs are available? 5.02 What books are available? 5.03 What newletters and magazines are available? 5.04 What CFS resources are available on Internet and Usenet? 5.05 What CFS resources are available on other electronic networks? 5.06 What national organizations are there? Part 6: Important information 6.01 What else is important for me to know about CFS? 6.02 What is "May 12 / International Awareness Day"? Appendices A1. Where to get the current version of this FAQ A2. Articles on-line A3. Common abbreviations ---------------------------- Part 0: Administrivia ---------------------------- 0.00 Copyright The CFS FAQ is copyright (c) 1995 by Roger Burns on behalf of the Internet CFS Group. Permission is granted to redistribute or quote this document for non-commercial purposes provided that you include an attribution to the Internet CFS group, the contact address of CFS-L-REQUEST@LIST.NIH.GOV, the FAQ's version number and date, and at least two locations from which a current version of this FAQ may be retrieved (see Appendix 1). For any other use, permission must be obtained in writing from Roger Burns . ---------------------------- 0.01 Introduction This document answers frequently asked questions (f.a.q.) about chronic fatigue syndrome (CFS). ---------------------------- 0.02 Disclaimer The information presented here is not medical advice and must not be used as a substitute for medical advice. It is important that anyone who has CFS should consult with a licensed health care practitioner who is familiar with the syndrome. ---------------------------- 0.03 Further information This FAQ is not comprehensive, and there are (or will be) separate FAQs that describe treatments, electronic resources, and other specialized topics. These related FAQs can likely be found near to where you have found this one. Or consult the CFS Index of FAQs which can be obtained in several ways, including sending the command GET CFS INDEX as an e-mail message to address LISTSERV%ALBNYDH2@ALBANY.EDU. ---------------------------- 0.04 Development of this FAQ This is a document whose development is in progress. It is being developed by the Internet CFS Group (that is, the participants of the Internet information about the group and this project, send electronic mail to CFS-L-REQUEST@LIST.NIH.GOV. To participate in developing this document, post messages to the FAQ: topic of the CFS-L mailing list or the ---------------------------- 0.05 Credits This initial draft was written by Roger Burns, with some phrases borrowed from "A Guide to CFIDS" by the CFIDS Association, and from Camilla Cracchiolo. All errors are mine (but read the disclaimer above). ---------------------------- Part 1: General ---------------------------- 1.01 What is CFS? Chronic fatigue syndrome (CFS) is an emerging illness characterized by debilitating fatigue (experienced as exhaustion and extremely poor stamina), neurological problems, and a variety of flu-like symptoms. The illness is also known as chronic fatigue immune dysfunction syndrome (CFIDS), and outside of the USA is usually known as myalgic encephalomyelitis (ME). In the past the syndrome has been known as chronic Epstein-Barr virus (CEBV). The core symptoms include excessive fatigue, general pain, brain fog, and often gastro-intestinal problems. Many other symptoms will also be present, however they will typically be different among different patients. These include: fatigue following stressful activities; headaches; sore throat; sleep disorder; abnormal temperature; and others. The degree of severity can differ widely among patients, and will also vary over time for the same patient. Severity can vary between getting mildly fatigued following stressful events, to being totally bedridden and completely disabled. The symptoms will tend to wax and wane over time. This variation, in addition to the fact that the cause of the disease is not yet known, makes this illness difficult to diagnose. ---------------------------- 1.02 What causes CFS? The cause of the illness is not yet known. Current theories are looking at the possibilities of neuroendocrine dysfunction, viruses, environmental toxins, genetic predispostion, or a combination of these. For a time it was thought that Epstein-Barr Virus (EBV), the cause of mononucleosis, might cause CFS but recent research has discounted this idea. The illness seems to prompt a chronic immune reaction in the body, however it is not clear that this is in response to any actual infection -- this may only be a dysfunction of the immune system itself. A recent concept promulgated by Prof. Mark Demitrack is that CFS is a generalized condition which may have any of several causes (in the same way that the condition called high blood pressure is not caused by any one single factor). It *is* known that stress, physical or emotional, seems to make CFS worse. Some current research continues to investigate possible viral causes including HHV-6, other herpes viruses, enteroviruses, and retroviruses. Additionally, co-factors (such as genetic predisposition, stress, environment, gender, age, and prior illness) appear to play an important role in the development and course of the illness. Many medical observers have noted that CFS seems often to be "triggered" by some stressful event, but in all likelihood the condition was latent beforehand. Some people will appear to get CFS following a head injury or surgery or some other traumatic event, yet it's unlikely that these events of their own could be a primary cause. ---------------------------- 1.03 Is CFS a "real" disease? At this early point, many doctors remain unconvinced that CFS is a genuine illness, although it is slowly increasing in acceptance. The reluctance is due in part to the facts that (1) no specific cause has yet been found, (2) there is no observable marker that doctors can use to specifically identify the illness, and (3) most doctors are not yet familiar with that peer-reviewed research which does tend to legitimize this diseease. Emerging illnesses such as CFS typically go through a period of many years before they are accepted by the medical community, and during that interim time patients who have these new, unproven illnesses are all too often dismissed as being "psychiatric cases". This has been the experience with CFS as well. But many top-level researchers are showing that this is a distinct, organic illness. This includes research by Anthony Komaroff (Harvard), Jay Levy (UCSF), Nancy Klimas (U. Miami), Andrew Lloyd (U. New South Wales), Stephen Straus (NIH), and others. Physicians and scientists may find the following citations of interest: Levine P; et al. "CFS: Current Concepts" (proceedings of the Oct. 1992 CFS medical conference), Vol. 18 Suppl. 1, January 1994, Clinical Infectious Diseases. Klimas N; Salvato F; Morgan R; Fletcher M; "Immunologic abnormalities in chronic fatigue syndrome". J of Clinical Microbiology 28:1403-1410 (June 90) [Study showing that NK cells (a kind of immune cell) malfunction in CFS patients; other abnormalities] Buchwald D; Komaroff A; Cheney P; et al.; "A chronic illness characterized by fatigue, neurologic and immunologic disorders and HHV-6 infection". Ann Int Med 116:103-112 (Feb 1992) [Study showing many CFS patients have HHV-6 infections] Demitrack M; Dale J; Straus S; et al.; "Evidence for Impaired Activation of the Hypothalamic-Pituitary-Adrenal Axis in Patients with Chronic Fatigue Syndrome". J of Clinical Endocrinology & Metabolism 73:1224-34 (Dec 1991) [shows chemical abnormalities in the brains of CFS patients] Straus S; Strober W; Dale J; Fritz S; Gould B; "Lymphocyte Phenotype and Function in the Chronic Fatigue Syndrome". J of Clinical Immunology 13:30-40 (Jan 93) [Study showing T4 cell (a type of immune cell) abnormalities in CFS patients] Lusso P; Malnati M; Garzino-Demo; Crowley; Long; Gallo; "Infection of natural killer cells by human herpesvirus 6". Nature 362:458-462 (April 1 1993) [HHV-6 -- previously found in CFS patients -- now shown to kill NK cells (a type of immune cell) -- a small but important advance in research] ---------------------------- 1.04 Who gets CFS? Few studies address this question. Several show that 70 to 80 percent of CFS patients are women, although some researchers say that these are normal figures for any immune-related illness. Some studies indicate that CFS is less common among lower income people and minorities, but critics point out that the average CFS patient sees so very many doctors before they can get a diagnosis, that only those with great access to medical care get counted in such studies, thus giving a bias with regards to income and race. ---------------------------- 1.05 Shouldn't this illness have a better name? There have been many complaints since the name CFS was adopted in 1988 by the U.S. Centers for Disease Control that this name trivializes the illness and re-inforces the perception that it may not be a legitimate disease. U.S. policy currently is that there is much medical literature tied to the current name, and that a change of name should wait at least until an accepted biological marker is found. There have been attempts to associate an eponym, such as "Nightingale Syndrome", with the scientific name of the illness but there has been no groundswell of support yet for any specific eponym or other alternative name. ---------------------------- Part 2: Medical issues ---------------------------- 2.01 How do I find good medical care for CFS? It is very important to find a health practitioner who is familiar with this illness. CFS can be mimicked by many other illnesses, and if you in fact have another illness that is not properly diagnosed, you may be losing out on getting treatments that might be effective for you. It is still an uphill struggle to find a doctor who is experienced in diagnosing and treating CFS. The best source of advice for identifying local doctors who may be familiar with CFS is your local support group. And the best way to identify local support groups is to contact one of your national organizations (see question 5.06). If there are no CFS- knowledgeable doctors in your area and you wish to find an out-of-town specialist, you may read about such specialists from time to time in the newsletter of your national organization. If your own doctor is sympathetic but not knowledgeable, you might gather together some medical articles which discuss CFS treatments and encourage your doctor to study them. (See the next question, part B.) ---------------------------- 2.02 What symptoms are used to diagnose CFS? A. CFS definition. In addition to the official researchers' definition discussed below, patients and experienced clinicians have noticed symptom patterns that seem prominent in CFS. These are described in question 1.01 above, and also include the observations that cognitive dysfunction often increases over time (over several years), and that brain scans often show that blood flow to the brain is decreased. CFS is defined somewhat differently by various medical groups in different countries. The 1994 research definition published by the U.S. Centers for Disease Control and Prevention recommends a step-wise approach for identifying CFS cases. The first step is to clinically evaluate the presence of chronic fatigue, i.e. "self-reported persistent or relapsing fatigue lasting 6 or more consecutive months". Conditions that explain chronic fatigue should exclude a diagnosis of CFS. These are: - "any active medical condition that may explain the presence of chronic fatigue ..." - any previous condition which might explain fatigue and which has not documentably come to an end; - "any past or current diagnosis of a major depressive disorder with psychotic or melancholic features; bipolar affective disorders; schizophrenia of any subtype; delusional disorders of any subtype; dementias of any subtype; anorexia nervosa; or bulimia"; - substance abuse within 2 years prior to onset; - severe obesity. The following should not exclude a diagnosis of chronic fatigue: - conditions which cannot be confirmed by lab tests, "including fibromyalgia, anxiety disorders, somatoform disorders, nonpsychotic or nonmelancholic depression, neurasthenia, and multiple chemical sensitivity disorder"; - any condition which might produce chronic fatigue but which is being sufficiently treated; - any condition which might produce chronic fatigue but whose treatment has already been completed; - any finding which on its own is not sufficient to strongly suggest one of the exclusionary conditions. After the above criteria are met, the following core criteria for CFS are applied: "A case of the chronic fatigue syndrome is defined by the presence of the following: 1) clinically evaluated, unexplained persistent or relapsing chronic fatigue that is of new or definite onset (has not been lifelong); is not the result of ongoing exertion; is not substantially alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social or personal activities; and 2) the concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during 6 or more consecutive months of illness and must not have predated the fatigue: - self-reported impairment in short term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social or personal activities; - sore throat; úÿ úÿ(Continued from last message) - tender cervical or axillary lymph nodes; - muscle pain; - multi-joint pain without joint swelling or redness; - headaches of a new type, pattern or severity; - unrefreshing sleep; - and post exertional malaise lasting more than 24 hours." The journal citation for the CDC definition article is: Keiji Fukuda, Stephen Straus, Ian Hickie, Michael Sharpe, James Dobbins, Anthony Komaroff, and the International CFS Study Group. "The Chronic Fatigue Syndrome: A Comprehensive Approach to Its Definition and Study". Ann Intern Med. 1994;121:953-959. B. Clinical views. Several helpful guides to diagnosis have been written by researchers and experienced clinicians, including an article by Charles Lapp and books by Charles Shepherd and by David Bell. See the references under the next question on treatments. --------------------------------------------------------------- 2.03 What are the specific treatments available for CFS? Many treatments are available. Most seem to be of limited usefulness, however different patients will respond differently and in some instances there is good response. An FAQ on treatments is being developed, and more detail about these issues will be discussed there. A. Avoid stress. As odd as it may seem, typically the most beneficial program is for the patient to avoid stress and to get lots of rest. This is usually the most effective regimen, among others that might also be undertaken. Failure to avoid stress often leads to short-term and long-term set-backs that can be serious. Many patients believe that if they had done more to avoid stress in the early phases of the illness, they would not have become nearly so disabled later on. The correlation between stress and the progress of this illness appearss to be strong. B. Medications. Treatments tend to address the symptoms, since the underlying mechanism of the disease is not really understood. Medications which are helpful are often those which have immune-modulating characteristics. CFS patients are unusually sensitive to drugs and they usually must take doses that are 1/4 or less than standard doses. Some drugs will be a big help to some patients and little or no help to others. And drugs that seem to work for a while may stop being effective later. According to studies presented at the October 1994 CFS medical conference, widely used treatments included: SSRIs ("selective serotonin re-uptake inhibitors" such as Zoloft, Paxil and Prozac) used to address fatigue, cognitive dysfunction and depression; low dose TCAs ("tricyclic anti-depressants" such as doxepin and amitriptyline) for sleep disorder, and muscle and joint pain; and NSAIDs ("non-steroidal anti-inflammatory drugs" such as ibuprofen and naproxen) for headache, and muscle and joint pain. Other treatments often prescribed are Klonopin, IMgG, nutritional supplements (particularly anti-oxidants, B-vitamins generally and B-12 specifically), herbs, and acupuncture. Less often prescribed were chiropractic therapy, IVgG, kutapressin, antivirals, interferon, and transfer factor. C. Role of exercise. While patients will need to avoid stressful activities, and each patient's toleration for stress will be different (and can change), it is nonetheless important for patients who can exercise to do so, up to their level of toleration. D. Dietary changes. CFS patients appear to be alcohol intolerant. Other food products often recommended against include caffiene, sugar and nutrasweet. Since in many patients it appears that the immune system is over-active, it may be more important than usual to take nutritional supplements to replenish burnt up reserves. Many patients have or develop food sensitivities, and in these cases relief may be found by avoiding foods that prompt problems. Patients tend to gain weight and they don't have vigorous exercise available as a counterbalance, so diet needs to be monitored with this in mind. E. Secondary problems. There can be several related problems, such as yeast, that need to be watched out for. Also, CFS has so many symptoms that it's easy to ascribe all new anomalies to this disease. But CFS patients are not exempt from getting other illnesses also, therefore it is important to regularly monitor your health and to consult with your doctor about the changes as they progress. F. Article references. The following are citations of articles on CFS medical treatment that your doctor may find useful. Conservative approaches "Management of a Patient with Chronic Fatigue Syndrome" by Nelson Gantz; appears as Chapter 14 in the book "Chronic Fatigue Syndrome" edited by David Dawson and Thomas Sabin, 1993, Little, Brown & Co. "Treatment of the Chronic Fatigue Syndrome: A Review and Practical Guide", Edith Blonde-Hill and Stephen D. Shafran, Drugs 46(4):639-651, October 1993. "Psychotropic Treatment of Chronic Fatigue Syndrome and Related Disorders", PJ Goodnick and R Sandoval; J Clin Psychiatry 54(1):13-20 January 1993 Moderate/aggressive approaches [The following are available by mail order from the CFIDS Association of America, Inc., PO Box 220398, Charlotte, NC 28222-0398 USA. Several of these are also available on Internet by e-mail retrieval; see instructions below.] "Chronic Fatigue Syndrome is a Real Disease", Charles Lapp; North Carolina Family Physician, Winter 1992. $3.00 Series of articles in Sept. '92 "Diagnosis" edition of CFIDS Chronicle, by Drs. Bell, Calabrese et al., Cheney and Lapp, Jay Goldstein, Hickie and Wakefield, Klimas, and other useful letters and reports. $8.00 Series of articles in Fall 1993 "Treatment" edition of CFIDS Chronicle, by Drs. Cheney and Lapp, Dimitri Viza and Giancarlo Pizza, Perry Orens, Edward Conley DO, Burke Cunha, James McCoy, Jay Goldstein and others. $10.00 Book: "The Doctor's Guide to Chronic Fatigue Syndrome", Dr. David Bell, 1994. $21.00. Book: "Living With M.E.", Dr. Charles Shepherd, M.D., revised 1993. $15.00 There are a series of medical articles on the diagnosis and treatment of CFS which are available on the SJUVM Listserv on the Internet. See Appendix 2 at the end of this document. ---------------------------- 2.04 What is the role of stress in CFS? Preliminary research suggests that CFS may involve a brain disorder (specifically, HPA dysfunction) which affects the stress response system in our bodies. CFS patients are standardly observed to be hypersensitive to stress. High-stress events sometimes seem to "trigger" the first appearance of the illness (see question 2.06), and they will usually worsen the symptoms if the illnes has already developed. Because stress is often mistakenly thought of as a purely emotional phenomenon with no physical aspect, the correlation of CFS with stress makes some people imagine that CFS must a non-physical "psychological illness". Medical studies show that stress plays an important role in several immune-mediated illnesses, and in fact a new field of research called psychoneuroimmunology has been created to study just this phenomenon. ---------------------------- 2.05 What research is currently going on? There is a great deal of research going on, regarding the possible cause of CFS, many of its symptom mechanisms, possible biological markers, treatments, and epidemiology. Dr. Mark Demitrack (U. Michigan) and Dr. Stephen Straus (NIH) and others are studying the dysfunction of the hypothalamic-pituatary-adrenal axis as being a possible major explanation for CFS. Dr. Anthony Komaroff (Harvard) and Dr. Dharam Ablashi (Georgetown) are researching the possible roles of HHV-6 and EBV (to decipher these abbreviations, see Appendix 3). Dr. W. John Martin (U. So. Calif.) is studying the "Stealth" virus. Dr. Michael Holmes (U. Otago) is researching another mysterious, virus-like particle. Drs. Nancy Klimas, Roberto Patarca (of U. Miami) and Jay Levy (UCSF) are investigating immunological abnormalities. Drs. Hugh Dunstan and Timothy Roberts (U. Newcastle) are researching a possible biological marker found in urine. Drs. Paul Cheney, Charles Lapp (of Cheney Institute) and Jay Goldstein (CFS Institute) are studying various treatments. The CDC team led by Drs. Keiji Fukuda and William Reeves are undertaking prevalence studies in the USA. These are jsut a few of the more prominent studies now on-going. ---------------------------- 2.06 How does CFS usually begin? For a slight majority of patients, the illness begins suddenly as though one had come down with the flu. Except that this "flu" doesn't seem to completely go away. For many other patients, the onset appears gradually over a long period of time. In many cases, a high-stress event seems to "trigger" the illness. There are many cases in which CFS appears to have begun with a severe head injury, for example. But since such events seem to have no apparent logical connection to the illness that follows, many have speculated that the CFS was latent in people beforehand in these cases, and that the stress of trauma merely triggered the stress-hypersensitivity aspect of the illness. Some have further speculated that other stressful factors in our environment, be they microbes or pollution, may also prompt this illness to bloom. ---------------------------- 2.07 How long can CFS last? The illness varies greatly in its duration. A few recover after a year or two. More will recover from 3 to 6 years after onset. Others may recover after a decade or more. But for some, the illness seems to simply persist. CFS often occurs in cycles, and succeeding cycles often become worse. It can be frustrating to obtain some relief, but then not know whether you have recovered or if you are merely between cycles. ---------------------------- 2.08 Is CFS contagious? Since the cause of the illness is not known, the question of contagion is not known. Many studies suggest that there is no correlation between CFS and casual or intimate contact. On the other hand, there are infrequent but occasional reports of cluster outbreaks of CFS. How that can happen, while at the same time in other instances intimate family members do not pass on the disease, remains one of the mysteries of this illness. ---------------------------- 2.09 Is CFS genetic? Several studies suggest that there may be a genetic component to CFS. This is not surprising since CFS seems to involve immune dysfunction to some degree, and immune-related illnesses often have a genetic component. The evidence on this point is not clear. And the fact that there seem to be cluster outbreaks of this illnes seems to argue against genetics as being the sole factor. ---------------------------- 2.09 Do people die from CFS? Essentially, the answer is no. Little about how CFS works in our bodies would suggest that it could be fatal. The slowing of metabolism and the weakening of muscle function, possibly including heart function, might raise some possibilities. But as a general matter, by no means should CFS be considered to be a terminal illness. On another front, CFS in the more severe cases can be so disabling, and the public and medical understanding of the disease can be so minimal, that many people have seen their lives taken away through loss of job, loss of support from family and friends, and loss of ability to take care of oneself. In the face of these vast irrational and deeply painful changes, there are many CFS patients who have taken their own lives. And so in these cases, what was the cause of death? ---------------------------- 2.10 Is CFS related to depression? Many emerging illnesses, before they have gained acceptance by the medical community, have initially been discounted as being hysteria, depression, somatoform disorders, etc. One hundred years ago, polio was dismissed in just that fashion. When CFS gained notice in recent times, many of its symptoms were correlated to depression, and many un-read physicians today still believe that's what CFS is. Much recent research, notably the finding by Demitrack that cortisol levels are low in CFSers whereas in depressed people they are high, indicates that CFS is not depression. (A politico-economic aspect of this question is that health insurers have an incentive to classify patients as having temporary illnesses that can be treated cheaply in a short time. Depression is consdered to be a short-term, treatable illness.) Another issue is that CFS patients can get "secondary depression" if the fact that their lives have been turned upside down bothers them for some reason. (Some people get worried when they lose their job, family and friends.) ---------------------------- 2.11 Is CFS related to AIDS? Enough is known about the mechanisms of both diseases to say that they are not the same. The fact that they both seem to involve the immune system, and that some not-fully-researched viruses might have some effect in both, have caused a few people (notably Neenyah Ostrom, a writer for the New York Native) to speculate that there is a common mechanism. The facts that CFS has no correlation to HIV nor shows any AIDS-like breakdown of the immune system shows that these illnesses are not the same. It is nonetheless true that the broad family of immune-related illnesses are becoming increasingly important in these times. ---------------------------- 2.12 Does CFS increase the likelihood of cancer? There have been no formal studies about this question to date. Clinicians dealing with the illnes have not noticed any higher incidence of cancer among their CFS patients. The issue is raised, however, because some resarch shows that CFS patients have impaired natural killer (NK) cell activity, and it is the NK cells which primarily protect against cancer. So this is an issue that bears watching. ---------------------------- 2.13 How does CFS affect children? One of the special aspects of CFS in children is that their self-image and there sense of their own abilities do not develop in a normal fashion, because they have little or no memory of their pre-CFS abilities. This surely plays an important and negative role in their personal development. ---------------------------- 2.14 How does CFS relate to pregnancy? If anything, in many cases the illness seems to be lessened for the mother during pregnancy, and no problems have been noticed with the children. Another aspect to consider is that the responsibilities of parenthood are many and are stressful, and this should be considered when planning a family. ---------------------------- 2.15 How does CFS relate to other similar illnesses (such as fibromyalgia, multiple chemical sensitivities, Gulf War syndrome, Lyme disease, candida, etc.)? There are several conditions whose symptoms and patterns are so similar that many believe there must be a common mechanism involved. If HPA dysfunction is truly involved in all these conditions, then this would be little surprise since neuroendocrine mechanisms are both complex and delicate, and thus minor variations in the theorized dysfunction might well produce the variants we are seeing in these related conditions. ---------------------------- Part 3: Life problems created by CFS ---------------------------- 3.01 How does one live with CFS? - Know that it's not you. It takes a lot to adjust to your new, lessened capabilities, and the adjustment is made more difficult by the expectations of you and those around you who have been long accustomed to dealing with your "normal, healthy self". - Patients often find an equilibrium point at which they can function. As in combating any chronic illness, a positive hopeful attitude is essential. - Be prepared for a possible lack of acceptance from some from whom you might expect support. This may be a shock, but when you cannot regularly "go bowling" with the gang, or you increasingly depend on being accomodated at home or on the job, and when you have a condition that your doctor may not certify or that other people have already heard of as "that yuppie disease", then your emotional world will become quite different. - Find new sources of support. It will be important to create a new family-and-friends support structure. This can be done through CFS support groups, electronic networking, pen pals, and other means. - You will need to take the time to create a new self image for yourself, to know that your new physical limitations do not limit you as a person, as a soul, no matter what other people are thinking. And take some advice from those who have travelled this difficult road before you -- consider reading from books like those below: "The Alchemy of Illness" by Kat Duff, 1993, Pantheon Book, New York. $19 "Recovering from Chronic Fatigue Syndrome: A Guide to Self- Empowerment" by William Collinge, 1993, The Body Press/Perigee, New York. $13.95 "Living With Chronic Fatigue Syndrome" by Timothy Kenny, 1994, Thunder's Mouth Press, New York. $12.95 ---------------------------- 3.02 How do I find support groups? To find local support groups, ask your national support organizations. See the list under question 5.06. To find electronic support groups, see the references under questions 5.04 and 5.05 below. ---------------------------- Part 4: Income security: Job and/or disability benefits ---------------------------- 4.01 How do I handle problems about my job? - If your work is, or will likely be, affected by your illness, educate your boss about your condition. Do this soon. You may need his support later when more problems may arise, and it will be easier to educate him while you are still relatively productive and "credible". - Understand that you might have to make some severe changes: a change of job, or perhaps an involuntary loss of your job and a shift to disability benefits. - Beware of the trap of losing important disability benefits if you switch to part time work. Many CFS patients whose health was spiralling downwards had switched to part-time work to preserve their place with their employer. Later, when their health deteriorated even more and they needed to seek disability benefits, they found out too late that those benefits for a part-time employee did not include a livable income, whereas if they had gone straight from full-time to disability, the disability payments were much more livable. Be careful. ---------------------------- 4.02 What problems do I face in seeking disability benefits? úÿ úÿ(Continued from last message) There are several info files at the Albany and SJUVM Listservs that have advice about applying for disability benefits. See the CFS Network Help file about how to access these (described under question 5.04). ---------------------------- Part 5: CFS information resources ---------------------------- 5.01 What other FAQs are available? There are CFS FAQs about resources on Internet/Usenet, on BBSs and commercial networks, and others. A treatments FAQ will be developed, and other specialized FAQs may also be developed. All of these are described in the CFS Index to FAQs. See the posting on command GET CFS INDEX as an e-mail message to the address LISTSERV%ALBNYDH2@ALBANY.EDU. ---------------------------- 5.02 What books are available? Note the support-oriented books listed under question 3.01 above, and the medical articles shown under questions 1.03, 2.02 and 2.03. Here are other good resources: "A Doctor's Guide to CFS", by Dr. David Bell, 1994. 275 pp. $21 from the CFIDS Association (see below). "Living With M.E.: the Chronic/Post-Viral Fatigue Syndrome", new edition for 1992, by Dr. Charles Shepherd, MD. 380 pp. North America: $15 from the First Floor, FREEPOST, Michelin House, 81 Fulham Road, London SW3 6YZ. Accept Access/American Express/Barleycard/ Diners Club/Visa. Australia: $12 plus $4 postage, send to ME/CFS Society Victoria Inc., 23 Livingstone Close, Burwood, Victoria, 3125 Australia. "Running On Empty: Chronic Fatigue Immune Dysfunction Syndrome" "Chronic Fatigue Syndromes: The Limbic Hypothesis" by Dr. Jay Goldstein, M.D. 259 pages. 27 color plates. $49.00. Available from the CFIDS [The books above can be purchased from the CFIDS Association of America, Inc., P.O. 220398, Charlotte, NC 28222-0398, USA.] "Chronic Fatigue Syndrome: A Pamphlet for Physicians", publication # 92-484, by the staff of NIH; May 1992; 15 pages; free of charge. For copies, contact Office of Communications, N.I.A.I.D., Building 31 Room 7A32, 9000 Rockville Pike, Bethesda, MD 20892, tel. 1-202-496-5717. [Note: the text of this pamphlet is available as an electronic file, on the Albany Listserv as filename CFS NIH-DOC and on various BBSs as CFS-NIH.DOC; see the CFS Network Help file described in question 5.04.] "The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome" edited by Dr. Byron Hyde MD, 75 articles by 80 researchers; 1992; 750 pp.; $140.00 Canadian or US, which includes postage and handling, Canadian orders are not subject to GST; $85 for patients, or contact Foundation for commission policy; VISA, MasterCard or American Express, include signature, card number and expiration date; order via telephone 1-613-728-9643 or fax 1-613-729-0825. Make checks or bank drafts payable to Nightingale Research Foundation, 383 Danforth Avenue, Ottawa, Ontario K2A 0E1, CANADA. ---------------------------- 5.03 What newletters and magazines are available? The most widely read CFS journal in the world is the CFIDS Chronicle, available for $30 yearly from the CFIDS Association of America, Inc., P.O. 220398, Charlotte, NC 28222-0398, USA. Each national organization also has its own publication (see question 5.05) most of which are very informative. The new medical periodical _Journal_of_Chronic_Fatigue_Syndrome_ is now available. One year for individuals is $36, for institutions $60, libraries $75. In Canada add 30% plus 7% GST. Other non-USA add 40%. Send to Haworth Press Inc., 10 Alice St., Binghamton, NY 13904-7981, USA. There is also the Update (quarterly) from the Massachusetts CFIDS 808 Main St., Waltham, MA 02154, USA. $20/year. ---------------------------- 5.04 What CFS resources are available on Internet and Usenet? There is a patients discussion group, available at CFS-L@LIST.NIH.GOV or as newsletter, the CFS Newswire service, Catharsis magazine, and many helpful articles and other documents available on-line through e-mail. An Internet discussion group for health professionals is being developed. All of these are described in the CFS Network Help FAQ. This FAQ will be e-mail by sending the command GET CFS NET-HELP as a message to the address LISTSERV@SJUVM.STJOHNS.EDU. For advice on how to access Internet and Usenet, see the CFS/ME Electronic Resources guide described in the next question. ---------------------------- 5.05 What CFS resources are available on other electronic networks? There are CFS discussion groups and information files available on various BBSs, Free-Nets, and on the major commercial networks such as GEnie, Prodigy, Compuserve and America Online. To get advice on where to find these resources, and on how to get generally plugged in to the world of CFS computer networking, you should get the free pamphlet "CFS/ME Electronic Resources" which is available in print and on-line. For a printed copy, please send a stamped, self-addressed legal-sized envelope to the following address in the USA: CFS/ME Computer Networking Project P.O. Box 11347 Washington, DC 20008-0547 Canadians should send to: CFS/ME Computer Networking Project 3332 McCarthy Road P.O. Box 37045 Ottawa, Ontario K1V 0W0 >From outside of the USA or Canada, please send to either address and include an International Reply Coupon to cover return postage. Printing the guide does cost some money, and the Project asks that donations of any size be sent in so that this work may continue. An electronic copy of this guide will be posted regularly to the newsgroup copy via e-mail, send the command GET CFS-NET TXT to the address LISTSERV@SJUVM.STJOHNS.EDU. The guide is also available for download from the Project ENABLE BBS in West Virginia, tel. 1-304-759-0727, file area 23, filename CFS-NET.TXT. ---------------------------- 5.06 What national organizations are there? === USA === CFIDS Association of America, PO Box 220398, Charlotte, NC 28222-0398 tel. 800-442-3437 or 1-704-362-2343, fax 1-704-365-9755. dues $30/yr CFIDS Foundation, 965 Mission St., Suite 425, San Francisco, CA 94103 info: 1-415-882-9986 from 1pm-3pm Pacific, fax: 1-415-882-9758 publication "CFIDS Treatment News" 2/yr for any donation (tax ded.) RESCIND, 9812 Falls Road, Suite 114-270, Potomac, MD 20854 fax: (after 6pm ET) 1-301-983-5644. Internet: MAY12@American.edu National CFS & Fibromyalgia Association, 3521 Broadway / Suite 222 Kansas City, MO 64111, tel. 1-816-931-4777, dues $15/yr Fibromyalgia Network, 5700 Stockdale Hwy, Suite 100 Bakersfield, CA 93309 info: 1-805-631-1950 from 10am-2pm Pacific, dues $15 USA, $17 Canada Human Ecology Action League, P.O. Box 49126, Atlanta, GA 30359 tel. 1-404-248-1898, publishes The Human Ecologist (quarterly) National Center for Environmental Health Strategies, 1100 Rural Avenue Voorhees, NJ 08043, tel. 1-609-429-5358, dues $15 American Acadmey of Environmental Medicine, PO Box 16106 Denver, CO 80216 tel. 1-303-622-9755 Chemical Injury Information Network, PO Box 301, White Sulphur Springs, MT 59645, contact: Cynthia Wilson, tel. 1-406-547-2255 National Foundation of Chemical Hypersensitivities and Allergies, PO Box 222, Ophelia, VA 22530, tel. 1-804-453-7538 === CANADA === M.E. Association, 246 Queen Street, Suite 400, Ottawa, Ontario K1P 5E4 tel. 1-613-563-1565, fax: 1-613-567-0614. Dues $35 Nightingale Research Foundation, 383 Danforth Avenue, Ottawa, Ontario K2A 0E1, tel. 1-613-728-9643, fax: 1-613-729-0825. Dues $35 National ME/FM Action Network, 3836 Carling Ave., Hwy 17B, Nepean, ON K2H 7V2. Dues $20. === UK === Myalgic Encephalomyelitis Association, Box 8, Stanford-le-Hope, Essex SS17 8EX, tel. 44-0375-642466 advice line, 1-4pm: 44-0375-361013 fax: 44-0375-360256. Dues 12 pounds Action for M.E., P.O Box 1302, Wells, Somerset BA5 2WE, dues 12.50 pounds === AUSTRALIA === ME/CFS Society of New South Wales, PO Box 449, Crows Nest, NSW 2065 tel. 61-2-439-6026 fax: 906-7892. dues $25 ME/CFS Society of Victoria, 23 Livingstone Close, Burwood, Victoria 3125 tel. 61-3-888-8991 ME/CFS Society of South Australia, PO Box 383, GPO, Adelaide, South Australia 5001. tel. 61-8-373-2110 ME Syndrome Society of Queensland, PO Box 12. Oxenford, Queensland 4210 tel. 61-75-73-2772 CFS Society of Western Australia, 92 Powell Street, Joondanna, Perth Western Australia 6060. tel. 61-09-483-6667 === NEW ZEALAND === A.N.Z.M.E. Society, PO Box 35-429, Browns Bay, Auckland 10 === NETHERLANDS === M.E. Stichting, Postbus 57436, 1040 BH Amsterdam. Dues 30 guilders/yr. === BELGIUM === AFZ M.E., Predikherenstraat 2, B-3000, Leuven === DENMARK === Danish ME/CFS Association, co/ A Midsem, Maglehoj 86, DK-3520 Farum === NORWAY === Norges M.E. Forening, Eikveien 96A, 1345 Osteras, tel. & fax: 47-2- 249879 dues 45 krona === GERMANY === Selbsthilfegruppe CFS-Syndrom - Immundysfunktion, c/o Birke Steinitz An St. Swidbert 52, D-40489 Duesseldorf. tel: 49-211-404376 === ITALY === C.F.S. Associazione Italia, Segreteria: Via Moimacco 20, 33100, Udine ---------------------------- Part 6: Important information ---------------------------- 6.01 What else is important for me to know about CFS? Medical research and acceptance of the illness will develop only if our national support organizations which promote them are strong. Be sure to support your national groups by, at the least, contributing annual dues. And when your national group calls for letters and phone calls to be sent to public officials and media, please get your family and friends to assist you in responding to those requests. We may be able to make greater achievements if we act in unison. In the USA, the largest source of research money comes from government allocations. Therefore, contacting your Congressman about the importance of CFS/CFIDS research is very important. ---------------------------- 6.02 What is "May 12 / International Awareness Day"? May 12 has been chosen by many national groups as International Awareness Day for chronic fatigue syndrome. May 12 is the birthday of Florence Nightingale, who had an undiagnosed, debilitating disease for many decades. Despite her constraints, Nightingale was able to found the International Red Cross. The concept of May 12 as International Awareness Day was developed by Tom Hennessy. He has now founded the RESCIND organization (Repeal Existing Stereotypes about Chronic Immunologic and Neurological Disorders) which promotes solutions for CFS, fibromyalgia, multiple chemical senstivities, and Gulf War Syndrome. RESCIND can be contacted at 9812 Falls Road, Suite 114-270, Potomac, MD 20854, USA, fax: (after 6pm ET) 1-301-983-5644, Internet: MAY12@American.edu. ---------------------------- Appendices ---------------------------- A1. Where to get the current version of this FAQ obtained via Internet e-mail by sending the command GET CFS FAQ as a message to LISTSERV%ALBNYDH2@ALBANY.EDU. It can be ftp'd from rtfm.mit.edu and in future will be stored as filename cfs-faq (it is now stored at cfs-general). ---------------------------- A2. Articles on-line There are a series of medical articles regarding the diagnosis and treatment of CFS which are available from the SJUVM Listserv on the Internet. Below are shown article titles and authors, with their filenames. Instructions on how to retrieve the files are described after this listing of articles. FILENAME Title of article -------- ------------------------------------------- CFSLAPP1 TXT | Chronic fatigue syndrome is a real disease. Lapp, CW. North Carolina Family Physician, Winter 1992. Contents: The CFIDS Chronicle Physicians Forum / CFIDS: The Diagnosis of a Distinct Illness. September 1992. Section I: Descriptive Articles CFIDS923 BELL | CFS: Recent Advances in Diagnosis and Treatment. Bell DS. CFIDS923 CALABRE# | Chronic Fatigue Syndrome. Calabrese L, Danoa T, Camara E, Wilke W. CFIDS923 CHENEY# | The Diagnosis of CFS: An Assertive Approach. Cheney PR, Lapp CW. CFIDS923 GOLDSTEI | The Diagnosis of CFS as a Limbic Encephalopathy. Goldstein JA. CFIDS923 HICKIE# | Diagnosing CFS: Principles and Pitfalls for the Patient, Physician, and Researcher. Hickie I, Wakefield D. CFIDS923 KLIMAS | Diagnosing CFIDS: An Immunologist's Approach. Klimas NG. CFIDS923 JONES# | Section II: Clinical Comments; by Jones JF, Komaroff AL, Natelson BH, Peterson DL. Section III: Research Articles CFIDS923 CDC | CFS Research at the Centers for Disease Control. CDC CFS Research Group. CFIDS923 YUNUS | CFS and Fibromyalgia Syndrome: Similarities and Differences; Yunus MB CFIDS923 SANDMAN# | Protocol for Cognitive Assessment of CFIDS. Sandman CA, Moore S. CFIDS923 IGER | The MMPI-2 CFS Profile. Iger LM. CFIDS923 HERST | 2'-5' Oligo-Adenylate Synthetase and RNase-L: Key Enzymes in the Antiviral Defense Mechanism. Herst CV. - - - - - - - - - - The above articles and other files of interest are available from the SJUVM LISTSERV at St. John's University. To use the SJUVM file server, send commands (described as follows) by e-mail to LISTSERV@SJUVM.STJOHNS.EDU To get a list of current files available, send the command GET CFS-FILE FILELIST to the LISTSERV address above. To retrieve specific files, note the filenames on the FILELIST and then send the command GET to the LISTSERV address (each file has a two-part name). ---------------------------- A3. Common abbreviations Below are shown common medical abbreviations that CFS people often come across. Following these are a list of abbreviations often found in computer network discussions. Medical BEAM - A kind of brain scan CBC - complete blood count CD4, CD8 etc. -- immune cells CDC -- Centers for Disease Control and Prevention (USA agency), responsible for estimating prevalence rates and making epidemilogical studies CEBV -- chronic Epstein-Barr syndrome. CFS was once thought to be this. CFS -- chronic fatigue syndrome CFIDS -- chronic fatigue and immune dysfunction syndrome, a name for CFS often used in the USA. CNS -- central nervous system COQ10 -- co-enzyme Q10, a naturally occuring substance which some patients find helpful; available without prescription DHEA -- dehydroepiandrosterone, a steroid hormone that some patients find helpful although this medication has risks DHHS -- Dept. of Helath and Human Services (USA agency) EBV -- Epstein-Barr Virus, the cause of infectious mononucleosis and linked to Burkitt's Lymphoma and nasopharyngeal cancer; for a time it was thought that EBV might be the cause of CFS, but later research showed there was no correlation. This latter news is still catching up to people, and some physicians still refer to CFS as CEBV (i.e, chronic EBV). EI -- See MCS EPD -- enzyme potentiated desensitization; a treatment FDA -- Food and Drug Adminstration; a USA agency which regulates drug approvals, nutritional supplements, and food quality and labeling FMS -- fibromyalgia syndrome; quite similar to CFS, many believe it is the same illness, although CFS researcher Dr. Paul Cheney says that FMS patients respond well to programs of graduated exercise, while CFS will suffer a relapse if they follow the same regimen. There's a separate network discussion group for this, úÿ úÿ(Continued from last message) GWS -- (a.k.a. PGS) = Gulf War Syndrome -- condition noted by USA and other militaty veterans who fought in the 1991 Persian Gulf war. This hasn't been studied enough to clarify that it's one syndrome. Many of the patients, though, exhibit symtpoms indistinguishable from MCS, and MCS treatments have been very successful with these patients (as reported at NIH's workshop on this topic, April '94). HHV6 -- human herpes virus 6; might be involved in several conditions, including CFS. HPA -- hypothalamic-pituatary-adrenal; this axis controls stress response and many other bodily functions; damage to this is implicated as a cause of CFS. IVIG -- intravenous gamma globulin; a treatment that some find helpful MAOI -- monoamine oxidase inhibitors; a class of drugs that some find helpful; several risks MCS -- multiple chemical sensitivities, also known as EI ( = environmental illness). Very similar to CFS except that in MCS, chemical & fume exposures are a clear trigger that worsen symptoms. Often discussed on the "immune" discussion group (to subscribe, contact immune-request@weber.ucsd.edu ME -- myalgic encephalomyelitis; the name for CFS used most commonly outside of the USA. MRI -- magnetic resonance imaging; a kind of brain scan NIH -- National Institutes of Health (USA agency); largest medical research institution in the world NK -- natural killer cell, a type of immune cell NSAID -- non-steroidal anti-inflammatory drugs; examples: naproxen, ibuprofen; used for pain PCR -- polymerase chain reaction; a DNA technique used for identifying viruses and other life forms PET -- a kind of brain scan PHS -- Public Health Service (USA agency); under the DHHS, the PHS includes NIH, CDC, and SSA PNI -- psychoneuroimmunology; new field that studies relations between emotions and the immune system PWC -- person with CFS PGS -- Persian Gulf Syndrome; see GWS. PVFS -- post-viral fatigue syndrome; term used in Britain, associated with CFS/ME SoPWC -- spouse of PWC; significant other of a PWC SPECT -- a kind of brain scan SSA -- Social Security Adminstration (USA agency), responsible for retirement and disability benefits SSDI -- disability benefit program form the SSA (USA) SSRI -- selective serotonin re-uptake inhibitors; examples: Zoloft, Paxil, Prozac; often used to address fatigue, cognitive dysfunction and depression T4, T8 etc. -- kinds of immune cells TCA -- tricyclic anti-depressants; examples: doxepin and amitriptyline; often used for sleep disorder, and muscle and joint pain; Computer Land btw -- by the way FAQ - frequently asked question; or, a document that answers frequently asked questions FTP -- file transfer protocol; a nifty Internet utility for storing/ retrieving files FWIW -- for whatever it's worth HTTP -- hypertext protocol; a nifty Internet utility which can link multiple resources IMHO -- in my humble opinion URL -- universal resource locator; an Internet term that identifies specificl locations for ftp, http, etc. resources w.r.t. -- with respect to :-) -- a "smilie", meaning "meant in jest"; (look at it sideways to see the smilie face)