------------------------------------------------------------------------------ ÿ@SUBJECT:CFS-NEWS #22 Index and Review From CFS-NEWS@LIST.NIH.GOV Sun Jul 11 22:45:48 1993 Date: Sun, 11 Jul 1993 22:35:58 -0400 Reply-To: Chronic Fatigue Syndrome Newsletter CFIDS/ME Sender: Chronic Fatigue Syndrome Newsletter CFIDS/ME From: Roger Burns Subject: CFS-NEWS #22 Index and Review X-To: cfs-news@list.nih.gov To: Multiple recipients of list CFS-NEWS HHHHHH HHHHHH HHHHHH H H HHHHHH H H HHHHHH H H H HH H H H H H H HHHHH HHHHHH HHHH H H H HHHH H H H HHHHHH H H H H HHH H H H H H HHHHHH H HHHHHH H HH HHHHHH HHHHH HHHHHH Chronic Fatigue Syndrome Electronic Newsletter -------------------------------------------------------------------- No. 22 July 11, 1993 Washington DC -------------------------------------------------------------------- INDEX FOR FIRST HALF OF 1993; REVIEW OF NETWORK RESOURCES CONTENTS >>>1. Index of CFS-NEWS articles for first half of 1993 >>>2. Review of network resources >>>3. Fidonet conference >>>4. Internet >>>5. Commercial Networks -- Discussions and Files >>>6. CFS Information on Electronic Files >>>7. Where to find the latest edition, & back issues, of CFS-NEWS >>>8. CFS Resource File (CFS-RES.TXT) This special edition of CFS-NEWS is mostly devoted to reviewing where CFS discussions and information can be found on computer networks and BBSs. Hats off to Bill Jackson of the (USA) National CFS Assoc. who has set up a CFS information section on a BBS in Kansas City, tel. 1-913-642-7907. The new Compuserve discussion area for CFS is becoming active (GO GOODHEALTH, message & Library sections 17). -------------------------------------------------------- >>>1. Index of CFS-NEWS articles for first half of 1993 The previous "Index and Review" edition of CFS-NEWS was issue #11, dated December 30, 1992. #12 January 18, 1993 >1. Fibromyalgia Research Conference Feb. 6-8 in Seattle >2. CFS/ME world action called for May 12 >3. New York Times story on CFS [3 study centers est'd] >4. CFIDS Awareness Rally in Sacramento, Feb. 6 #13 January 19, 1993 >1. Medical Update from I.F.M.E.A. >2. New resources: British BBSs, Ottawa FREE-NET #14 February 7, 1993 >1. NIH study on CFS immune abnormalities >2. U.S. Senate vote to affect CFS research funding >3. Physician's CFS network discussion >4. Lyme Disease electronic newsletter >5. Any Prodigies out there? #15 February 11, 1993 >1. FDA Hearing on CFS issues -- Feb. 18 >2. Studies on ICL disease are published >3. New England medical educational symposium -- March 12 >4. Gulf War Disease update >5. Medical publications update #16 March 1, 1993 >1. Educational video-tape on CFS >2. U.S. Senate approves research measures >3. Muscle study by Alberta researchers >4. March is USA CFS Awareness Month >5. CFS service center opens in New York City #17 April 22, 1993 >1. "Infection of NK Cells by HHV-6" study by NIH scientists >2. Conferences: CFS & Neurobiology / Lyme Disease >3. CFIDS Chronicle: Advocacy >4. CFS information at NYSDH file server >5. Changes at CFS-NEWS: A report from the editor #18 April 24, 1993 >1. Medical publications update >2. May 12 "ME/CFS Awareness Day" >3. Help to influence the TV News >4. Dr. Byron Hyde on speaking tour >5. USA budget hearings on CFS set for May 12-14 #19 May 5, 1993 >1. New edition of "Living With M.E." by Dr. Charles Shepherd >2. May 12 Update >3. USA budget hearings: clarification >4. Networking News #20 June 3, 1993 >1. CFS underdiagnosed according to Lyme study >2. Lyme research conference >3. Official W.H.O. classification for CFS >4. Compuserve conference on CFS >5. EI/MCS discussion created on Fidonet >6. Haworth publications update #21 July 1, 1993 >1. New book by Dr. Jay Goldstein: "Chronic Fatigue Syndromes: The Limbic Hypothesis" >2. USA CFIDS Research >3. UK M.E. Research >4. Medical publications update >5. Gulf War Disease medical study >6. New CFS electronic magazine: "Catharsis" #22 July 11, 1993 >1. Index of CFS-NEWS articles for first half of 1993 >2. Review of network resources >3. Fidonet conference >4. Internet >5. Commercial Networks >6. CFS Information on Electronic Files >7. Where to find the latest edition, & back issues, of CFS-NEWS >8. CFS Resource File (CFS-RES.TXT) -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>2. Review of network resources The following 4 articles show where CFS electronic files and active discussions can currently be found. All of these resources are very helpful and many are free or low-cost. The editor of CFS-NEWS wishes to encourage every CFS/CFIDS/ME support group to have at least one volunteer monitor or participate in one or more of the various electronic discussions so that information and news can be quickly exchanged among all groups. On the Fidonet volunteer network of BBSs, information can exchanged (usually at no charge) within a day or two. On the Internet and on the commercial networks, information is exchanged within minutes. The Fidonet network of BBSs is the most accessible; it is available around the world and usually at no cost (see article 3 below) and it hosts the CFS "Echo" (discussion group). Internet is usually thought of as a network of mainframe computers only, but you can access it if you are near one of the Free-Nets or the no-cost public unix BBSs listed in article 4 below; the Internet offers quick access to CFS-NEWS and access to the CFS-L discussion group. Commercial networks (article 5) offer discussions that are faster than Fidonet and often have many information files available. The most active discussion groups at this time are the Fidonet CFS "Echo", the GEnie CFS section, the Internet CFS-L "list" (also available as newsgroup alt.med.cfs), the Prodigy CFS section on their Medical bulletin board, and the new group starting on Compuserve, in the GOODHEALTH forum's section 17. Several medical journal articles and other useful information are available on various electronic files, as described in article 6 below. The different ways getting CFS-NEWS electronically, as well as its back issues, are listed in article 7. And finally, although the electronic resource information found in this edition of CFS-NEWS will appear twice a year, a file version of this and other CFS information will be regularly updated and is available on many computer systems as described in article 8 below. -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>3. Fidonet 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. Each day, participants exchange and discuss experiences about treatments and other issues. The CFS Conference on Fidonet is sponsored by the West Virginia Research and Training Center in Dunbar, West Virginia USA. The conference can be reached at any of the 121 BBSs listed below (although additional BBSs are joining every week). 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 near you, follow the advice in section 7 of the CFS-RES.TXT file (see article 8 below). The following BBS listing is maintained and updated by Mr. Sandy Shaw, sysop of the Wholebit Computer News BBS in Ottawa, Canada. CFS CONFERENCE BBS LIST as of July 5, 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 CASAN Anaheim CA 1-714-952-2110 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 MedInfo Jacksonville FL 1-904-246-1481 NE Florida CFS Jacksonville FL 1-904-292-3904 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 úÿ (continued next message) ****************************************************************************** From Packet: CHANNEL1 Message # 153571 Area : 700 [Unlisted Conferenc From : Cfs-news@list.nih.gov 07-11-93 21:35 To : Eliot Gelwan Subj : CFS-NEWS #22 Index and R ------------------------------------------------------------------------------ ÿ@SUBJECT:CFS-NEWS #22 Index and Review úÿ(Continued from last message) area #11. The service offers access to Internet e-mail. 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/month. The hourly rate is $4/peak, $12/off-peak. Four hours of free credit are allowed to all customers each month. PRODIGY computer service has an active CFS discussion group. Prodigy is available in the USA only. To join call 1-800-776-3449. There are 2 pricing plans. The "value plan" is $14.95 (plus local tax) per month and includes "core" services for no extra hourly usage fee. The "alternative plan" is $7.95/month for all core and Plus services plus an hourly rate. Participants in the Medical bulletin board (where the CFS subsection is) who are registered as being disabled get a price special break: 5 hours free usage per month plus $2.40 per each hour thereafter while in the Medical/CFS section. The other parts of the Prodigy system have hourly fees that are more expensive (call the phone number above for specific information). Prodigy plans to add Internet e-mail in the near future. To get to the CFS section, enter the Bulletin Boards, choose the Medical section, and then the subsection devoted to Chronic Fatigue Syndrome. 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. There are information files in GOODHEALTH's Library 17 as well -- do a keyword search on "CFS". Compuserve offers Internet e-mail access. 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. There is a $9/month mail allowance, and Internet messages sent or read are billed at $0.15 per 1st 7500 characters, $.05 for each 2500 characters thereafter. The Alternative plan is $2.50/month and use of the mail area is simply billed at the regular hourly rate. The hourly rates are: 300 baud, $6.30/hr; 1200 or 2400 baud, $12.80/hr; 9600 baud, $22.80/hr. 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. 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. MCI-MAIL offers Internet electronic mail, faxes and other communication services. For sign-up information in the USA call 1-800-444-6245. The annual fee is $35.00. There is a charge for out-going messages depending on the size of the message. In-coming messages are free. 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. -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>6. CFS Information on Electronic Files Many helpful CFS files can be found on some commercial networks. Check the GEnie and Compuserve computer networks described in the preceding article. === BBSs === PROJECT ENABLE BBS : 1-304-766-7842 Dunbar, West Virginia USA Sysop: Tom Freeman > origin of Fido CFS Conference; moderator is Roger Burns MEDBASE / TUCSON CFS BBS : 1-602-790-7420 Tucson, Arizona USA sysop: Molly Holzschlag > an excellent BBS source for CFS information USA CFIDS/CFS BBS : 1-207-623-8486 Augusta, Maine USA Sysop: John Kossowan > the most comprehensive source of CFS electronic information WHOLENOTE BBS : 1-704-251-9863 Asheville, North Carolina USA Sysop: Will McGruffin > over 100 files of CFS information N.E. Florida CFS BBS : 1-904-292-3904 Jacksonville, Florida USA Sysop: Gail Hitson 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 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 Portsmouth, BRITAIN MEGAHERTZ (Midn-6am): 44-81-595-1921 London, BRITAIN Sysop: Lloyd Hopkins DUTCH HEALTH BBS : 31-55-337951 Apeldoorn, NETHERLANDS === FILES ON INTERNET === A general description of, and means of access to, the Internet appears in article 4 above. 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). CFS-NEWS back issues are available on the Albany Listserv. Send the command GET CFS-NEWS <###> where <###> designates the issue number. E.g., to retrieve issue number 5 send the command GET CFS-NEWS 005 . -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>7. Where to find the latest edition, & back issues, of CFS-NEWS CFS-NEWS gets copied by various people to many BBSs and other computer systems; however, to obtain CFS-NEWS in the speediest fashion you may note that the editor personally transmits the newsletter by 4 means: 1) Internet e-mail, by subscription. If you have Internet access (see article 4 above) type in the command SUB CFS-NEWS , where your name replaces , and e-mail it to the Internet address LISTSERV@LIST.NIH.GOV or to LISTSERV@NIHLIST.BITNET . 2) it is posted as a message to the CFS "echo" (i.e., electronic discussion group) available on Fidonet BBSs. To find a Fidonet BBS that currently carries the CFS echo, see article 3 above. 3) it is uploaded to the Project ENABLE BBS in Dunbar, West Virginia USA at tel. 1-304-766-7842 in file area 22. (Back issues in that same file area.) 4) it is posted to USENET newsgroup bit.listserv.cfs.newsletter. Newsgroups are available on many BBSs and mainframe computers. For back issues, note the following: - on Internet, create the command GET CFS-NEWS ### (where ### represents a particular issue number, e.g., for issue #21, ### would be 021) and send it as e-mail to LISTSERV%ALBNYDH2.BITNET@ALBANY.EDU - on the Project ENABLE BBS in Dunbar, West Virginia USA at tel. 1-304-766-7842 in file area 22; - on the CFS echo or USENET newsgroup, check previous messages. - back issues can be found on Compuserve in the GOODHEALTH forum, section 17. Also on GEnie on page 970, Category 18, file area 11. And on the MEDBASE / Tucson CFS BBS at tel. 1-602-790-7420. -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>8. CFS Resource File (CFS-RES.TXT) This file contains the network resource information found in this edition of CFS-NEWS, and other basic references for CFS information. The file has sections on: CFS -- Information and Networking; What is Chronic Fatigue Syndrome?; Support Groups; Periodicals and Books; Sources of Electronic Information; BBSs which carry the CFS Conference; and Access to Internet, USENET and Fidonet. Download the file as filename CFS-RES.TXT from the Project ENABLE BBS at tel. 1-304-766-7842 in file area 22. On the Internet, send the command GET CFS-RES TXT as e-mail to the address LISTSERV%ALBNYDH2.BITNET@ALBANY.EDU . =================================================================== CFS-NEWS (ISSN 1066-8152) is an international newsletter published and edited by Roger Burns in Washington D.C. It is distributed: through the "CFS echo" (discussion group) on the Fidonet volunteer network of BBSs; via the NIHLIST Listserv on Internet; and as USENET Newsgroup bit.listserv.cfs.newsletter. Back issues are on file on the Project ENABLE BBS in West Virginia USA at telephone 1-207-623- 8486 in file area 22, and the valuable patient resource file named CFS-RES.TXT is available there also. Suggestions and contributions of news may be sent to Roger Burns at Internet CFS-NEWS@LIST.NIH.GOV or by Fido NetMail to 1:109/432, or at telephone 1-202-966-8738, or postal address 2800 Quebec St. NW #1242, Washington DC 20008 USA, or post a message to the CFS echo or to the Internet CFS-L group or to newsgroup alt.med.cfs. Copyright (c) 1993 by Roger Burns. Permis- sion is granted to excerpt this document if the source (CFS-NEWS) is cited. Permission is also granted to reproduce the entirety of this document unaltered. This notice does not diminish the rights of others whose copyrighted material as so noted may be quoted herein. Note that Fido and Fidonet are registered marks of Tom Jennings and Fido Software. =================================================================== INTERNET users are encouraged to obtain the CFS-RES TXT resource file and other CFS files at the NYSDH file server. Send the command GET CFS-RES TXT (or for a full list of files, send GET CFS-D FILELIST) by Internet e-mail to the address LISTSERV%ALBNYDH2.BITNET@ALBANY.EDU . Distribution of CFS-NEWS on the Internet is sponsored by the NIH Computing Utility. However, the content of this independent newsletter and the accuracy of the sources which it cites are solely the responsibility of Roger Burns. To subscribe, send the command SUB CFS-NEWS to the address LISTSERV@NIHLIST.BITNET or LISTSERV@LIST.NIH.GOV . Back issues can be more readily retrieved from a different site; send the command GET CFS-NEWS ### (where ### equals the issue number, such as 019 for issue 19) and send to LISTSERV%ALBNYDH2.BITNET@ALBANY.EDU . =====================================================================