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Subject: FAQ: CFS alt.health.cfids-action/CFIDS-L Guidelines

This article was archived around: 24 May 2006 04:22:21 GMT

All FAQs in Directory: medicine/chronic-fatigue-syndrome
All FAQs posted in: alt.health.cfids-action
Source: Usenet Version

Archive-name: medicine/chronic-fatigue-syndrome/cfids-guidelines Posting-Frequency: weekly Last-modified: 1999/11/14
CFIDS-L / alt.health.cfids-action Rules and Guidelines Welcome to CFIDS-L / alt.health.cfids-action! This discussion group is for political action issues regarding CFS/CFIDS/ME. Vists our web page at http://www.cfs-news.org/action.htm for information about current projects. Those who are looking a patients' discussion of health and other issues should join the CFS-L medical/support group, since none of those issues are discussed here. To find out about that group, see the web page at http://www.cfs-news.org/cfs-l.htm or contact the group's volunteer managers by e-mail at CFS-L-REQUEST@MAELSTROM.STJOHNS.EDU . This group, CFIDS-L, focuses on CFS/CFIDS/ME activism. CFIDS-L is not a support group. To unsubscribe from CFIDS-L, send an e-mail message which says UNSUB CFIDS-L to the address LISTSERV@MAELSTROM.STJOHNS.EDU, or ask for assistance by writing to CFIDS-L-REQUEST@MAELSTROM.STJOHNS.EDU where a human being will answer. ------------------------------------------------------------------- Access to the group The Action for CFIDS / M.E. group is mostly an e-mail list. Messages posted our speical NET: topic are seen through our companion newsgroup alt.health.cfids-action. -------------------------------------------------------------------- About CFIDS 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). For a wealth of CFS related information, see the web page at http://www.cais.net/cfs-news . Other lists of particular interest to readers of this discussion are described at the end of this message. -------------------------------------------------------------------- Group rules 1. Posts must be on topic - i.e. about CFIDS/CFS/M.E. activism. 2. There are to be no "flames", i.e. no personal attacks on a fellow participant. 3. No advertising. 4. Reports of rule violations must be sent privately to the moderators, i.e. no discussion of specific rule violations on the list. 5. Discussion of the group's rules shall take place only under the ADMIN: topic. A special directive is in place for the indefinite time being which bans the following: -- all criticisms having to do with PAST actions or communications prior to May 20, 1999 by (1) the CAA (the CFIDS Association of America), (2) NCF (National CFIDS Foundation), (3) RESCIND, AND (4) any of those organizations' individual board members, officers or staff, including but not limited to: Kim Kenney, Marc Iverson, Vicki Walker, Ed isenberg, Patti Schmidt, Tom Hennessy, Gail Kansky, and anyone else working on behalf of CAA, NCF or RESCIND. -- more specifically, comments to be banned will be those like: "Organization X" or "individual Y" are liars, or are working against the interest of patients, etc. Any disparaging comments about the groups, and their related individuals, listed above are be banned. -- only criticisms of actions / statements prior to May 20, 1999 are banned. Anything that happens after then is open for discussions and criticism. However, no reference can be made to past characterizations. For example, the following would not be allowed: "Their new announcement made today is false, SO THEY ARE LYING JUST LIKE THEY ALWAYS HAVE". Or: "Today's action by the X Group undermines the interests of the patients, ONCE AGAIN." There must be no open discussion of this directive while it is in effect (which will be indefinitely). Any comments about this directive must be sent to the moderators privately at CFIDS-L-REQUEST@MAELSTROM.STJOHNS.EDU. The moderators may from time to time, at their discretion, announce an action that they have taken regarding an individual case of a rule violation, and they may explain why they have taken that action. However, such announcements will contain a notice stating that no one may discuss or ask questions about these specific cases in public in the group, and that those who do may have their posting privileges suspended. Permanent rules for the group are made by the senior moderator (Roger Burns) only by fully consulting with the whole group first. Posted messages remain within the e-mail group unless the keyword NET: appears in the Subject: line of the message. The NET: messages appear both in the e-mail group and in the newsgroup alt.health.cfids-action, and so will be archived in many public search engines. -------------------------------------------------------------------- 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. --------------------------------------------------------------------- Other CFS-oriented discussion groups and mailing lists Below are listed a few of the more popular discussion groups and mailing lists about CFS. There are dozens of CFS groups, and to view a more complete catalog of them see the web page at http://members.aol.com/cfslists/lists.htm . About mailing lists To join a mailing list you can request assistance from the group's manager(s) OR you can self-subscribe. Each of the descriptions shown below contains an e-mail address for the groups' managers, and the procedure to self-subscribe. To self-subscribe you must know the list's name, and the address of the specific 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 (the automated mailing list manager). However, to post messages to a discussion group for the readers to see, you must send your message to the listname address. General example: To subscribe, send a message in the form of SUB (listname) YourFirstName YourLastName to the particular LISTSERV where the list is based; but to post messages for the whole group to read, send to the list's address. Specific example: To join the list CFS-L which is based at LISTSERV@MAELSTROM.STJOHNS.EDU, Ms. Sally Forth would subscribe by sending an e-mail message which says SUB CFS-L Sally Forth to the address LISTSERV@MAELSTROM.STJOHNS.EDU. After she has joined, she can post messages for the whole group to read by sending to address CFS-L@MAELSTROM.STJOHNS.EDU . For a more extensive discussion about mailing lists and LISTSERV, see the CFS Network Help file. To obtain it, send an e-mail message which says GET CFS NET-HELP to address LISTSERV@MAELSTROM.STJOHNS.EDU, or see the web page at http://members.aol.com/cfslists/net-help.htm#LISTS . SPECIFIC GROUPS ================================================== (1) Listname: CFS-NEWS Title: CFS-NEWS Electronic Newsletter Subscription address: LISTSERV@MAELSTROM.STJOHNS.EDU To get assistance: CFS-NEWS-REQUEST@MAELSTROM.STJOHNS.EDU Web page: http://www.cfs-news.org/cfs-news.htm The CFS-NEWS Electronic Newsletter focuses on medical issues about chronic fatigue syndrome. It is published between 1 and 4 times each month. It has an estimated readership of over 10,000 in some 50 countries. To self-subscribe, send an e-mail message in the form of SUB CFS-NEWS YourFirstName YourLastName to the address LISTSERV@MAELSTROM.STJOHNS.EDU. Or ask to be added by writing to CFS-NEWS-REQUEST@MAELSTROM.STJOHNS.EDU . The newsletter's web page is at http://www.cfs-news.org/cfs-news.htm . ================================================== (2) Listname: CFS-L (linked to the alt.med.cfs newsgroup) Title: CFS Patients discussion group Subscription address: LISTSERV@MAELSTROM.STJOHNS.EDU To get assistance: CFS-L-REQUEST@MAELSTROM.STJOHNS.EDU Web page: http://www.cfs-news.org/cfs-l.htm This is the most active CFS discussion group on the Internet. Topics include medical treatments, disability benefits, coping and other issues. The group can be accessed through Internet e-mail, through the Usenet newsgroup alt.med.cfs, or through a web interface. For direct posting privileges to the group, register by sending an e-mail message in the form of SUB CFS-L YourFirstName YourLastName to the address LISTSERV@MAELSTROM.STJOHNS.EDU. Read the newsgroup's Topics FAQ for the rules of participation. To get assistance, write to CFS-L-REQUEST@MAELSTROM.STJOHNS.EDU . ================================================== (3) Listname: CO-CURE Title: CFS/FM information exchange Subscription address: LISTSERV@LISTSERV.NODAK.EDU To get assistance: CO-CURE-REQUEST@LISTSERV.NODAK.EDU Web page: http://www.co-cure.org This is an announcements list (not a discussion group) where news about CFS and FM are exchanged. To join the CO-CURE mailing list, send an e-mail message in the form of SUBSCRIBE CO-CURE (FirstName) (LastName) to the address LISTSERV@LISTSERV.NODAK.EDU . ================================================== (4) Listname: FIBROM-L Title: Fibromyalgia / Fibrositis discussion Subscription address: LISTSERV@MITVMA.MIT.EDU To get assistance: FIBROM-L-REQUEST@MITVMA.MIT.EDU This is an active discussion group for patients and doctors about Fibromyalgia. The group makes some help files available. To get on the FIBROM-L mailing list, send an e-mail message in the form of SUB FIBROM-L YourFirstName YourLastName to the address LISTSERV@MITVMA.MIT.EDU . There is also a separate Usenet newsgroup alt.med.fibromyalgia . To find Fibromyalgia resources on the web, see http://www.cfs-news.org/fibro.htm . ================================================== (5) Group: LIVE CHAT (IRC) CFS patients participate daily in live chat sessions via Internet Relay Chat (I.R.C.). This is mostly a social outlet, and is often a lot of fun! See the web page at http://www.cfs-news.org/irc.htm ================================================== (6) Listname: CFS-DOC Title: CFS discussion for doctors Subscription address: CFS-DOC-REQUEST@MAELSTROM.STJOHNS.EDU To get assistance: CFS-DOC-REQUEST@MAELSTROM.STJOHNS.EDU Web page: http://www.cfs-news.org/cfs-doc.htm This is a private discussion group about CFS. Only medical doctors and doctors of osteopathy may participate. To apply to join, see the web page at http://www.cfs-news.org/cfs-doc.htm or write to address CFS-DOC-REQUEST@MAELSTROM.STJOHNS.EDU . Also see the Doctors CFS Web page at http://www.cais.net/cfs-news/doctors.htm . ================================================== (7) Listname: CFIDS-L (linked to the alt.health.cfids-action newsgroup) Title: Activism for CFS/CFIDS/ME Subscription address: LISTSERV@MAELSTROM.STJOHNS.EDU To get assistance: CFIDS-L-REQUEST@MAELSTROM.STJOHNS.EDU Web page: http://www.cfs-news.org/cfids-l.htm Political action discussion for CFS/CFIDS/ME. The group can be accessed either through Internet e-mail OR through Usenet as newsgroup alt.health.cfids-action. SUB CFIDS-L YourFistName YourLastName as an e-mail message to LISTSERV@MAELSTROM.STJOHNS.EDU. Also see the Action web page at http://www.cfs-news.org/action.htm. ================================================== (8) Listnames: CFS-Y and CFS-20S There are two groups for young people: CFS-Y for youths under 25, and CFS-20S for adults in their 20s. - - - - - - - - - - - - - - - - - Listname: CFS-Y Title: CFS Youth Discussion group Subscription address: LISTSERV@MAELSTROM.STJOHNS.EDU To get assistance: CFS-Y-REQUEST@MAELSTROM.STJOHNS.EDU This group is for young people under 25 who have CFS/CFIDS/ME. To join, send an e-mail message in the form of: SUB CFS-Y YourFirstName YourLastName to the address LISTSERV@MAELSTROM.STJOHNS.EDU. See also the Youth and Pediatrics CFS web page at http://www.cfs-news.org/youth.htm . - - - - - - - - - - - - - - - - - Listname: CFS-20S Title: 20-somethings CFS discussion Subscription address: LISTSERV@MAELSTROM.STJOHNS.EDU To get assistance: CFS-20S-REQUEST@MAELSTROM.STJOHNS.EDU Web page: http://members.wbs.net/homepages/c/f/i/cfids/cfs20s.html CFS-20s is for 20-somethings with CFIDS/CFS/ME, their spouses or significant others, and those with CFS related conditions. To subscribe, send an e-mail message in the form of subscribe CFS-20s (YourFirstName) (YourLastName) to address LISTSERV@MAELSTROM.STJOHNS.EDU . ================================================== (9) Listname: CFS-CARE Title: Caregivers discussion Subscription address: CFS-CARE-REQUEST@MAELSTROM.STJOHNS.EDU To get assistance: CFS-CARE-REQUEST@MAELSTROM.STJOHNS.EDU Caregivers of PWC's discussion. Please note that the discussion group is limited to caregivers of PWC's. To subscribe send a request to CFS-CARE-REQUEST@MAELSTROM.STJOHNS.EDU. ================================================== (10) Listname: CFS-OPEN Title: Unmoderated CFS Discussion group Subscription address: LISTSERV@MAELSTROM.STJOHNS.EDU To get assistance: CFS-OPEN-REQUEST@MAELSTROM.STJOHNS.EDU This is an unmoderated CFS patients' discussion group. Heated discussions that are too argumentative to be held elsewhere may be held here. Postings of long documents are also allowed. ---------------------------- CFS information documents The following web pages are quite useful: Main CFS/M.E. info page http://www.cfs-news.org Frequently Asked Questions http://www.cfs-news.org/faq.htm Quick Index http://www.cfs-news.org/quick.htm All of the following documents can be obtained by sending an e-mail message in the form of GET filename1 filename2 to the address LISTSERV@MAELSTROM.STJOHNS.EDU. For example: GET CFS FAQ CFS INDEX A complete list of basic CFS documents on-line. CFS FAQ Answers to frequently asked questions about CFS. CFS LISTS Description of CFS-oriented mailing lists. CFS NET-HELP Detailed info about CFS resources on Internet =========== From: CFIDS-L@MAELSTROM.STJOHNS.EDU =========== --------- end of document -------------------------------------