CHRONIC FATIGUE SYNDROME RESOURCE file for patients Latest version: September 20, 1992 Copyright (c) 1992 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. CONTENTS 1. CFS -- Information and Networking 2. What is Chronic Fatigue Syndrome? 3. Support Groups 4. Books on CFS 5. Information files available via Internet 6. BBSs that carry CFS information 7. BBSs which carry the CFS Conference 8. World BBSs which could carry the CFS Conference (ASK!) =================================================================== 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 (published by the CFIDS Assoc. USA) 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 the Chronic Fatigue Syndrome Electronic Newsletter. Internet users may subscribe by sending the command SUB CFS-NEWS [where is replaced by your name] to the Internet address LISTSERV@LIST.NIH.GOV or LISTSERV@NIHLIST.BITNET . Compuserve users must precede the Internet address with >INTERNET: Users of the United Kingdom's JANET network must reverse the order of the components of all Internet node names, e.g. they should send the SUB command to the address LISTSERV@GOV.NIH.LIST . The newsletter will also be posted to the CFS "echo" (or conference) on Fidonet -- see the next item, and section 6. 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. See section 6. INTERNET DISCUSSION. In addition to the CFS conference on Fidonet, there is a CFS discussion list on the Internet. To join, send the command SUB CFS-L where is replaced by your name, to the Internet address LISTSERV@LIST.NIH.GOV or LISTSERV@NIHLIST.BITNET (in the United Kingdom, send to LISTSERV@GOV.NIH.LIST). To send messages to the CFS-L group, however, the messages must be sent to the address CFS-L@LIST.NIH.GOV or CFS-L@NIHLIST.BITNET . Please take care to send messages intended for the entire CFS-L group to the CFS-L address only, and to send administrative commands (to subscribe, etc.) to the LISTSERV address only. CFS INFORMATION AVAILABLE FROM BBSs AND THE INTERNET. Many helpful information files on CFS are available on certain BBSs accessible to anyone with a personal computer and a modem -- see section 5. Many files are also available from the Internet -- see section 8. This file has been created and is maintained by Roger Burns of Washington DC, a CFS patient, who can be contacted at Internet address CFS-NEWS@LIST.NIH.GOV or CFS-NEWS@NIHLIST.BITNET, or at Fido NetMail address 1:109/432 or by posting a message on the Fidonet CFS conference. The author welcomes suggestions for improving this resource file. The file has been uploaded to CompuServe as filename CFSRES.TXT on the forums GOODHEALTH (Library 17) and MEDSIG (Library 3). It is also available on GEnie as filename CFS-RES.TXT on the Disabilities Round Table, GEnie Page Number 970. The latest version is always available on the Internet -- see section 5 below. 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. It has been associated with viral activity and medical research is trying 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 (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. 3. SUPPORT GROUPS === USA === CFIDS Association P O Box 220398 Charlotte, NC 28222-0398 USA 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 ea. 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. National CFS Association 3521 Broadway / Suite 222 Kansas City, MO 64111 USA telephone: 1-816-931-4777 Available: Quarterly newsletter $15/yr. general information packet $1 patient info. packet $15 physician's packet $10 how to be a phone contact $4 how to form a support group $6 CFS info. bibliography $3.50 === CANADA === The Nightingale Foundation 383 Danforth Avenue Ottawa, Ontario K2A 0E1 telephone: 1-613-728-9643 membership: $35/yr. includes quarterly newsletter services: they support a network of local support groups; publish a CFS medical encyclopedia edited by Dr. Byron White, MD M.E. Association 246 Queen Street Suite 400 Ottawa, Ontario K1P 5E4 telephone: 1-613-563-1565 membership: $35/yr. includes monthly newsletter "The MEssenger"; list of medical articles regarding CFS/ME provided on request. === UK === M.E. Action P.O Box 1302 Wells, Somerset BA5 2WE ENGLAND membership: about #14/yr. includes Interaction journal 3 times/yr. 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; 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. Myalgic Encephalomyelitis Association Box 8 Stanford-le-Hope Essex SS17 8EX UNITED KINGDOM === AUSTRALIA === ME/CFS Society of New South Wales P.O. Box 449 Crows Nest, NSW 2065 telephone: 61-2-906-3165 ME/CFS Society of Victoria 24 Livingstone Close Burwood, Victoria 3125 telephones: information/support: 61-3-888-8798 admin/social worker: 61-3-888-8991 ME/CFS Society of South Australia P.O. Box 383 GPO, Adelaide, South Australia 5001 telephone -- counseling & information: 61-8-373-2110 A.C.T.M.E. Society c/o SHOUT Office Community Centre Wisdom Street Hughes, ACT 2605 telephone: 61-62-81-2983 ME Syndrome Society of Queensland P.O. Box 12 Oxenford, Queensland 4210 Far North Support Group P.O. Box 511 Manunda, Cairns, Northern Territory 4870 telephone: ring Pauline Norris (070) 534-408 === NEW ZEALAND === A.N.Z.M.E. Society P.O. Box 35-429 Browns Bay Auckland 10 NEW ZEALAND === NETHERLANDS === (Dutch M.E. Foundation) M.E. Stichting Office: Robert Scottstraat 4 NL - 1056 AX Amsterdam Postal address: Postbus 57436 NL - 1040 BH Amsterdam telephone: none === HONG KONG === Hong Kong ME Information 60B Conduit Road, 3rd floor HONG KONG === PAPUA, NEW GUINEA === Papua, New Guinea Myalgic Encephalomyelitis Support Box 44 Ukarumpa, Via Lac PAPUA, NEW GUINEA === REPUBLIC OF SOUTH AFRICA === ME Awareness Group 66 Third Street Lower Houghton, 2198 SOUTH AFRICA 4. BOOKS ON CFS "Running On Empty: Chronic Fatigue Immune Dysfunction Syndrome" by Katrina Berne, Ph.D. softcover $13.95, hardcover $21.95 1992, Hunter House Inc., Alameda, CA "Hope and Help for Chronic Fatigue Syndrome" by Karyn Feiden. $17.95 Prentice Hall Press, 1990 "CFIDS: An Owner's Manual" by Barbara Brooks and Nancy Smith. NOTE: For now, the publisher/author is out of stock for this excellent resource. It may be best to try to borrow a copy from a local support group. When available, the book costs $16.50 plus $3.00 to cover shipping; make checks payable to BARBARA BROOKS Send to: BBNS Box 6456 Silver Spring, MD 20916-6456 USA 5. INFORMATION FILES AVAILABLE VIA INTERNET "The Internet" is the name for the worldwide communications network which uses electronic mail and other services to link mainframe computers belonging to universities, research organizations and government offices. Several commercial services have e-mail links to the Internet such as CompuServe, America OnLine and MCI-MAIL, and plans have been announced to connect GENIE and Prodigy. Information files about CFS are available for retrieval by e-mail from the Internet (the procedure is described below). The files currently available are: INDEX 87 lines; brief descriptions of the CFS files available from the NIH file server on the Internet. RESOURCE 753 lines; latest version of THIS file. NIH.PAMPHLET.FOR.DOCTORS 709 lines; CFS: "A Pamphlet for Physicians", published by NIH, May 1992. TREAT.MENT.PROTOCOL 221 lines; developed by a committee of physicians sponsored by the CFIDS Foundation of San Francisco. This protocol is offered for guidance only and will be modified as new research and other clinical information provides better data. Spring 1992. SCIENCE.NEWS.UPDATE.DEC91 326 lines; News update on CFS research published in Dec. '91 issue of Science magazine. BBS.FILELIST.MAINE 466 lines; brief descriptions of each of 153 info files on CFS available from the USA CFIDS/CFS BBS in Augusta, Maine at 1-207-623-8486; this is the most comprehensive source of electronic files regarding CFS information. BBS.FILELIST.ARIZONA 325 lines; brief descriptions of each of 129 info files on CFS available from the Tucson CFS BBS at telephone 1-602-749-0040; an excellent resource. CDC.DEFIN.ITION 363 lines; the medical article by GP Holmes MD, et al. which gives the current CDC definition of CFS; published in the Annals of Internal Medicine, 1988. MEDICAL.BBS-LIST 704 lines; listing of over 400 medical and health oriented BBSs around the world; compiled by Ed Del Grosso MD of the Black Bag BBS of Newark, Delaware USA, telephone 1-302-731-1998. MEDICAL.BIBLIOGR.#1992 450 lines; listing of recent medical articles and monographs regarding CFS. NIH.BACK.GROUN.DER 526 lines; CFS information from NIH. LYME.CASE 161 lines; CFS and Lyme Disease discussed by patient Carol Esposito. These files are retrievable by sending a command via e-mail to the NIH file server on the Internet. Place the command GET FTP CFS. (where is replaced by the name of the file in question) in the Subject heading of an e-mail message (note: the message text is ignored). Send the e-mail to the Internet address SERVER@CU.NIH.GOV or to SERVER@NIHCU.BITNET . Compuserve users must precede the Internet address with >INTERNET: For example, to retrieve the latest version of THIS file (which is named RESOURCE), prepare an e-mail message -- the message itself doesn't matter because SERVER ignores it -- and when prompted for the Subject, enter the command GET FTP CFS.RESOURCE and when prompted for the Internet address enter SERVER@CU.NIH.GOV . Internet users may use anonymous FTP to cu.nih.gov or 128.231.64.7, password=guest, directory=CFS, filename= . 6. BBSs that carry CFS information: USA CFIDS/CFS BBS : 1-207-623-8486 noon to midnight, Eastern Time Augusta, Maine USA Sysop: John Kossowan descr: most comprehensive source of CFS information on file Tucson CFS BBS : 1-602-749-0040 6:00 AM to midnight, Mountain Time Tucson, Arizona USA descr: another excellent BBS source for CFS information PROJECT ENABLE BBS : 1-304-766-7807 Dunbar, West Virginia USA Sysop: Tom Freeman Origin of Fido CFS Conference; moderator is Preston Richardson WHOLEBIT COMPUTER NEWS : 1-613-521-3690 Ottawa, Ontario CANADA Sysop: Sandy Shaw WHOLENOTE BBS : 1-704-251-9863 Asheville, South Carolina USA BLACK BAG BBS : 1-302-731-1998 Newark, Delaware USA Sysop: Ed Delgrosso, M.D. WELLSPRING BBS : 1-714-856-7996 Irvine, California USA UC/Irvine Biomedical Library UK HEALTHLINK : 44-942-722984 Wigan, United Kingdom DUTCH HEALTH BBS : 31-55-337951 Apeldoorn, Netherlands 7. BBSs WHICH CARRY THE 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 Dunbar, West Virginia USA. The conference, moderated by Preston Richardson, can be reached at any of the 60 BBSs listed below (although additional BBSs are joining every week). Each day, participants exchange and discuss experiences about treatments and other issues. CFS CONFERENCE BBS LIST as of September 20, 1992 === USA === ADAnet(tm) NetHub Birmingham AL 1-205-854-9074 MetaBoard Birmingham AL 1-205-254-3344 Ken's BBS Montgomery AL 1-205-244-0296 Golden Valley PonyRom Kingman AZ 1-602-757-0385 WPGS Adelanto CA 1-619-246-5166 CASAN Anaheim CA 1-714-952-2110 ST-Keep Support Citrus Heights CA 1-916-729-2968 Shenk's Express La Mesa CA 1-619-697-8873 One World Los Angeles CA 1-310-372-0987 Body Dharma Online Oakland CA 1-510-836-4717 Mushin BBS San Diego CA 1-619-535-9580 Cuerna Verde BBS/2 Pueblo CO 1-719-545-8572 Denver Goodwill Westminster CO 1-303-650-7732 The Handicap News Shelton CT 1-203-337-1607 Black Bag BBS Newark DE 1-302-731-1998 The Above Board Sarasota FL 1-813-377-1470 SpaceCon BBS Audubon FL 1-407-459-0969 Southern Crescent Forest Park GA 1-404-363-0194 I Can! BBS Chicago IL 1-312-736-7434 Silver Slipper BBS Pekin IL 1-309-346-6829 BearWhiz BBS Peoria IL 1-309-697-1011 Special Needs BBS Whiting IN 1-219-659-0112 Real Times Boston MA 1-617-783-8820 Middlesex News BBS Framingham MA 1-508-872-8461 The Idea Link Silver Spring MD 1-301-949-5764 DRAGnet - Disability Resources Anoka MI 1-612-753-1943 Great Lakes M.O. System Marysville MI 1-313-364-5119 Boat Town USA Mt. Clemens MI 1-313-468-0912 Doc in the Box BBS Jefferson City MO 1-314-893-6099 Electronic Dreams BBS Jackson MS 1-601-372-6998 The Orphanage Charlotte NC 1-704-873-2058 SelfHelp BBS Elizabeth NJ 1-908-289-3981 Med TechNet Buffalo NY 1-716-688-1552 CIC/S.I.G.C.A.P.H Churchville NY 1-716-293-2692 Olman BBS - 10pm-9am EST Beavercreek OH 1-513-426-9695 The Emerald City Miamisburg OH 1-513-434-6953 Nerd's Nook II Rocky River OH 1-216-356-1772 MED-Tech BBS Union OH 1-513-832-1532 SoundingBoard Pittsburgh PA 1-412-621-4604 US Telematics Yardley PA 1-215-493-5242 The Equalizer BBS Dalzell SC 1-803-469-2018 National Amputee Connection Dallas TX 1-214-238-0928 Houston Outdoor Info Line Houston TX 1-713-890-2336 MacEndeavour Houston TX 1-713-640-1298 HandiNet B B S Virginia Beach VA 1-804-496-3320 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 Dunbar WV 1-304-766-7807 === CANADA === Generations Calgary AB 1-403-251-5540 The Messhall Calgary AB 1-403-286-7545 Bev's Serenity Shack Burnaby BC 1-604-436-3271 MegaByte BBS Mailer Cobble Hill BC 1-604-743-1293 The BandMaster Vancouver BC 1-604-266-7754 Acropolis HST Grimsby ON 1-416-945-6131 Sugar Bush BBS Ottawa ON 1-613-837-5473 Wholebit Computer News Ottawa ON 1-613-521-3690 Canada Remote Systems Toronto ON 1-416-798-4713 === AUSTRALIA === The Runway Stanmore NSW 61-2-569-5130 The Homeless BBS Frankston VIC 61-3-7831275 8. WORLD BBSs WHICH COULD CARRY THE CFS CONFERENCE (ASK!) If you don't have a nearby BBS which carries the CFS conference 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 any Fidonet BBSs nearby then the following list may be helpful. These are medical & health oriented BBSs which are on Fidonet, and so have the technical capability of carrying the CFS echo, which is on the "Fidonet backbone". Please remember that Fidonet BBSs are run by volunteers. If they accept (although a few may require) monetary donations, they deserve your support. Many thanks to Edward Del Grosso, M.D. from whose Medical BBS List most of the entries below were derived. Ed's BLACK BAG BBS, based at Newark, Delaware, USA can be reached by dialing 1-302-731-1998. U.S.A. *** ARIZONA St Joseph Hospital 1-602-235-9653 New Parents Network 1-602-326-9345 *** CALIFORNIA Babinski's BBS 1-209-636-3333 Emergency Public 1-408-298-2740 24 Hours a Day 1-408-448-1126 Fire BBS 1-408-683-0282 MacScience BBS 1-408-866-4933 Survival Forum 1-707-545-0746 HIV/AIDS Info 1-714-248-2836 12 & 12 Anonymous 1-714-539-5394 Beckman Inst 1-714-773-8818 Medical Education 1-714-796-8368 LLUMC Online Medical Libr 1-714-824-4328 COMPSEA 1-714-865-8586 Calif Self Help 1-714-952-2110 Blue Star BBS 1-916-872-1444 *** FLORIDA CG Medterm 1-305-444-5615 Med Talk 1-305-749-2395 FIU Sci BBS 1-305-940-5740 The Firehouse BBS 1-305-948-4382 Health Source 1-813-979-7307 MedLink BBS Node 1 1-904-431-1913 Medical Info Health Network 1-904-221-9425 *** GEORGIA Middle GA Medical Forum 1-912-477-8741 *** ILLINOIS Check Source 1-217-244-6954 The Cloud Chamber 1-217-684-2081 Eye Resources Net 1-708-299-1296 *** INDIANA Special Needs 1-219-659-0112 *** IOWA Hemophilia 1-319-356-1632 *** KANSAS South of the River 1-913-642-7907 *** KENTUCKY Fido Racer 1-502-762-3140 Nurses Station 1-606-932-9597 *** LOUISIANA Psychonomical 1-318-254-0274 The Fire Scene 1-504-641-4789 LA Medsig 1-504-738-5100 Resource Access 1-504-897-9204 *** MARYLAND Braille Inn 1-410-893-8944 *** MASSACHUSETTS Physics Forum 1-413-545-1959 Boston Gas 1-617-235-6303 VI/BUG 1-617-767-2909 *** MICHIGAN Emergency Room 1-517-651-5945 AAPS 1-616-329-7569 Bloom County Hosp 1-616-361-8345 Intensive Care 1-906-428-3250 Social Work 1-906-774-8555 *** MINNESOTA DisABILITY Connection 1-507-281-3692 Medical Software Exchange 1-507-281-1989 *** MISSOURI Optometry Online 1-314-553-6475 IN MED BBS 1-314-968-9140 Fire BBS 1-417-831-7171 Point of View 1-816-254-9116 *** MONTANA Community Memorial 1-406-482-5211 *** NEBRASKA National Bio Med 1-402-559-6023 *** NEW HAMPSHIRE Easy Does It 1-603-228-0705 Tactical Edge 1-603-352-0194 Emergency Net 1-603-529-1948 *** NEW JERSEY Maple Shade 1-609-482-8604 *** NEW MEXICO NASW 1-505-646-2868 *** NEW YORK NYC Fire Dept 1-212-964-8090 Steamer One 1-518-753-7421 *** NORTH CAROLINA The Medical Forum 1-919-455-1075 Entropy BBS 1-919-471-0634 *** NORTH DAKOTA UND Psych 1-701-777-4495 *** OHIO EmergiNet 1-614-461-7620 *** OKLAHOMA Pill Box BBS 1-405-681-5818 SITE 1-405-366-1449 *** OREGON Sherri Lynn Knobel 1-503-244-5711 Recovery Northwest 1-503-288-3218 Busker's Boneyard 1-503-771-4773 *** PENNSYLVANIA Fire BBS 1-717-566-3500 Emergency Services 1-717-566-3500 *** SOUTH CAROLINA Periscope 1-803-650-9022 *** TENNESSEE Promises 1-615-385-9421 TDIN 1-615-577-7290 Humanities Forum 1-615-662-0371 Stepping Stones 1-615-977-7359 *** TEXAS Health-Link 1-512-444-9908 Diabetes Discussion 1-512-451-9737 SON NET 1-512-471-7584 ACS Connection 1-512-828-5948 DigiMed 1-806-798-3259 Bone Box 1-817-244-7136 Gas Company 1-817-265-8938 DD Connection 1-817-429-0508 Feet First BBS 1-817-753-4999 Health Professions 1-915-590-9798 Sky's the Limit 1-915-594-7806 *** VIRGINIA DARKNESS III 1-703-768-2751 HandiNet BBS 1-804-496-3320 *** WASHINGTON Spokane In Recovery 1-509-325-1058 The Hartmann Medical BBS 1-509-884-7803 *** WISCONSIN SciQuest (154/32) 1-414-353-1576 ARGENTINA Med-BBS 54-1-88-7112 AUSTRALIA AlphaMed Link 61-2-438-2137 BELGIUM BBS Med-Mail Headquarters 32-2-6607515 CANADA RCI Youth Science 1-416-886-4156 Doctor on Board 1-416-937-1907 Vision Talk 1-519-250-0675 Vision BBS 1-613-523-8199 Challenged 1-613-547-2479 FINLAND Scientist's RCom 358-0365163 GERMANY Medic-BBS 49-721-694986 The Medical BBS 49-223-449479 Medical System 49-89-295223 GREECE DDLG Disability Support BBS No2 30-31-930980 DDLG Disability Rag 30-31-214071 HONG KONG MedInfoNet 852-760-4228 labMED 852-782-5048 Handicapped Comp 852-8550569 ITALY TELESIBioC 39-268-89009 TeleMedical 39-50-589351 ValMedical 39-571-242193 NETHERLANDS Nurse Net 31-10-4101933 HIV+BBS 31-20-6814230 Dutch Health BBS 31-55-337951 RUSSIA MedInfoPro 7-095-293-2135 SINGAPORE Medline Bulletin Board Systems 65-7750170 UNITED KINGDOM Clinical Chem 44-867-368123 Focus Medical Resource Centre 44-489-577514 UK Healthlink 44-942-722984 Disabled Data Link Group [HQ] 44-502-518274 Tara Recovery 44-442-231693 DDLG Link Line 44-484-681753 P H A C S 44-752-361291 Sijos BBS 44-525-261365 Chemi Call 44-322-278652 The Alchemist 44-666-504597 ==================== END OF CFS RESOURCE FILE =====================