The CFS/ME/FMS 20-Somethings Support Group (CFS-20s) Please save this information for future reference. By confirming your subscription to CFS-20s you are agreeing to abide by the rules of the mailing list. CONTINUING YOUR SUBSCRIPTION ON THIS MAILING LIST WILL BE INTERPRETED AS ACCEPTANCE OF THESE RULES. If you do not agree to follow these rules, please unsubscribe now. List members who do not abide by these rules will be unsubscribed by the list owner. For full details, please see the CFS-20s Webpage: http://www.angelfire.com/me4/cfs20s/ or send an e-mail requesting a copy of the rules to: cfs-20s-request@listserv.icors.org CONTENTS CFS-20s Welcome, Rules/Commands, & Resources 1.Description of CFS-20s 2.Rules *Everyone must read this section* 3.Sending Mail to the list 4.List Settings and Commands 5.The CFS-20s IRC Chat Channel 6.CFS-20 Directories and Resources 7.Other Mailing Lists and Newsgroups 8.Common Acronyms and Abbreviations 9.Acknowledgements DESCRIPTION OF CFS-20s CFS-20s is an e-mailing list for 20-somethings with CFS/ME/FMS, their spouses or significant others, and 20-somethings with CFS/ME/FMS related conditions. 20-somethings begin to encounter a whole new range of illness-related problems. These include (but are not limited to) marriage, engagement, dating (or not being able to date due to health), financial, schooling, and career problems. This will be the place to provide support and discuss hopes and fears relating to career options, schooling choices, personal relationships, sexual issues, financial woes, dependence on parents at a time one longs to be independent, etc. This will also be the place for the significant others of CFS/ME/FMS patients to receive support, encouragement, and "coping" tips. It is a place for all involved to discuss experiences, frustrations, and fears, in addition to providing an environment to vent, ask questions, and receive help. The CFS-20s Board of Directors, along with other volunteers, keep the list up and running as a community as well as technically. E-mail the current listowner at cfs-20s-request@maelstrom.stjohns.edu. The current members of the board are: -Jocelyn 'ygg' (krasota or eye of newt), USA, cfs-20s-request@listserv.icors.org LIST OWNER -Michelle (Zzing), Canada -Penni, UK, james-penni@UKONLINE.CO.UK You may also want to contact some of the following volunteers directly. If in doubt, email the current listowner at cfs-20s-request@listserv.icors.org. -The CFS-20s Web Page was designed by Roger Peacey, CFS20sweb@rbpc.demon.co.uk -The CFS-20s Webring belongs to Nichole Everyone involved in operating the CFS-20s list and its related resources is a current or former list member. RULES (Everyone *MUST* read this section) We would prefer to run this list with the absolute minimum number of rules, so here are what we think are the essential ones. We reserve the right to alter, change, and add to these as it becomes necessary - the list will always be notified if this happens. Once new rules are posted to the list, it is automatically understood that members of CFS-20s agree to abide by them, or they agree to unsubscribe immediately. (a) Absolutely NO commercial advertisements of any kind, without express written permission of the list owner. The posting of bulk advertising, and bulk junk mail to the list as a whole and to its members is not allowed. Postings where the primary purpose is financial gain for the author are also not allowed, unless there is express written permission of the list owner. Chain letters, regardless of their nature, and "spamming" to the group and its members, are also strictly prohibited. (b) Disagreements may occur, and healthy skepticism or discussion is allowed, BUT the list discussion is intended to be supportive of all members. Flaming and personal attacks are NOT allowed. Flaming means to direct abusive comments at an individual, or about an individual, for something they posted. (c) Reposting private e-mail is a violation of privacy. Please check your message headers carefully before pressing REPLY or SEND. We understand brainfog, and if you do inadvertently repost someone's private mail, the best first response is abject public and private apology. Short messages such as "me too" or "thank you, so-and-so" should most likely be sent via private e-mail rather than to the list as well. (d) Reposting or rediscussing list mail to another source (or to another person not subscribed to CFS-20s -- excluding immediate family members, spouses, fiances, and S.O.'s) is not permitted unless permission is granted from all authors involved. This is a private list, and the e-mails contained therein are to remain private. (e) Assembling group messages into a database and archiving messages is strictly prohibited for ALL reasons except for personal, private use. (f) This list is designed for individuals only, as a private support group. No groups or organizations may subscribe. Individuals from groups or organizations may subscribe for their PERSONAL use -- from their PERSONAL e-mail account -- but these individuals must request and receive permission from the authors and list owner on CFS-20s before passing on *any* list mail. (g) Members of this list are expected to be who they say they are. Deliberately misrepresenting your age, sex, professional, or educational experience, marital status, reason for subscribing to CFS-20s, etc., is not allowed. (h) This list is a SAFE SPACE for CFS-20s subscribers to share information, conversation, and support. It is not intended to be a place to conduct research, sell products, "preach" religious or political propaganda, spy on other list members, harass other list members, etc. Use of this list for the purposes mentioned above is not allowed. Surveys and Questionnaires are not to be posted to the group without express written permission of the list owner. Replies to these will not be sent to the list as a whole, but to the one posting the survey/questionnaire. If a list member or someone they know is conducting a research project, and they need help from the members of CFS-20s, prior approval must be given by the list owner. (i) Do not post exceptionally large posts to the list, as well as (and including) files and encoded binaries. Many people do not have computer systems that can receive such large downloads, and several list members pay a by-the-minute connection fee. Please be understanding and respectful. And if in question about a large post, please seek prior-approval from the list owner. If these rules are broken, then the listowner and board of directors may do one or more of the following: 1. The board will decide that it was an honest mistake and it won't happen again. The error will be pointed out to the person(s) involved but no further action will be taken. 2. Messages sent by the person(s) involved will be moderated, this means that every post comes to us directly first and must be approved before everybody sees it. 3. Posting privileges may be suspended temporarily, this means you can read mail but not post. 4. The board may unsubscribe a member from the list, either permanently or temporarily, which means you can neither read nor post. Please note any "disciplinary action", if needed, is at the discretion of the list owner. The list owner and Board of Directors reserve the right to temporarily or permanently unsubscribe anyone from CFS-20s should they feel that it would be for the betterment of the list as a whole. This will be by unanimous vote, unless a list owner and/or Board member is directly involved in the situation in question -- in which case it will be by unanimous vote of the remaining list owner and Board member(s). If there are ever *big* problems on the list, for example a flame-war that won't go away, the board may set the list to be moderated for a short time, or even take the list offline for a few days altogether for the sake of everyone's health. SENDING MAIL TO THE LIST To mail the list, send your message to cfs-20s@listserv.icors.org and LISTSERV makes copies for all the people who have subscribed. Send commands to the LISTSERV address, listserv@listserv.icors.org. Do not send mail to the listserv address, only commands. See the next section for more information on commands. Trimming Replies When replying to a post, please trim your message. This means deleting text from the original post(s) that isn't directly relevant to your reply, to prevent emails from becoming too long. If there are several bits that you are replying to, you can delete the irrelevant bits in between and type in 'snip' to acknowledge that there is a bit missing. Some people receive CFS-20s in digest form, (several posts as one long email), because they are too sick to receive all the separate messages. If you don't trim, they will get the same message several times, making it harder for them to deal with the sheer volume of posts. If you are in doubt, contact the board for further guidance. Using the Subject line Please make use of the subject line when posting to the list. Some people are not able to read all list messages and a useful subject line helps them stay involved with the list without becomming overwhelmed. If you are replying to a post the subject line will be included automatically, but if the theme of the message has changed please update the suject line as well. For example, Subject: vitamin supplements (was: spinach recipes) Using Topic Headings CFS-20s uses the topic prefix feature because this method allows those who are very ill to select which topics they wish to see, and saves them from having to view things they aren't interested in, or are unable to cope with right now. This can mean the difference between being able to remain on the list or having to go nomail to someone who is going through a rough patch. As always though, we are understanding, especially as this will be new to some people. Please feel free to contact the listowner or members of the board if you have questions concerning the topics. The current topics available are SOC: for social things, HUM: for humorous posts and jokes, and OTHER: for everything else concerning CFS. The OTHER: prefix isn't necessary as everything without a prefix falls under that, and this is expected to include anything having to do with CFS, like coping, asking for support, medical topics, etc.. For information on how to change your topics settings, see the commands section. Using topic settings is fairly simple. When writing the subject of your e-mail, you just add the prefix at the beginning. For instance, say you wanted to post a humorous joke. The subject would look something like: HUM: Lightbulb joke The HUM: part would make the message go only to those receiving humor postings. It works the same for SOC: posts. Just add that to the beginning of the subject, and that's it. Your time and understanding will greatly help the list and assist those who find it hard to keep up with the list. Note: the topic prefix must appear as it does in the example. That is, it must be all capitals, followed immediately by a colon, then a space, and then the subject. Also note that those on digest mode receive all topics. Finally, when you reply to a message that already has the prefix, you don't need to move it to the front of the message. The Re: added in front will not affect it. For instance, replying to the above example would create the subject: Re: HUM: Lightbulb joke That would be fine and also get distributed only to those receiving humor postings. WHAT TO TALK ABOUT As subject matter is concerned, CFS-20s is intended to be an "anything goes" environment. However, subjects such as gender relations and religion tend to end up in heated arguments, no matter how good the authors' intentions. Please think carefully before you bring up, or respond to, such topics -- and take into account geographical differences, different (if any) religious preferences, societal backgrounds, etc. The key word in these discussions is RESPECT. This is a support group environment, not a platform. Thank you for your understanding in this matter. Some examples could be: Dating (or not dating)with this disease, school, career, intimacy, money, living environment, family, venting, and anything to keep your spirits up, even if it's not CFS/ME/FMS-related! - How do I tell someone that I'm involved with about this disease, and convince them that we can have a future with it? - How will I ever get an education/career with my health as it is? - How do others on this list deal with the sexual issues, problems, and concerns that go along with this illness? - How can my significant other and I make rent, pay bills, buy groceries, and purchase my medications on one income? - Will I have to live with my parents forever? - Support -- "How do I survive just now?" - Vent what is on your mind (the bad AND the good) One of the list rules prohibits posting advertisements or spam without the express permission of the list owner. Here are some guidelines about you should or should not post. If a post involves a member potentially making money or any material gain, or does not fit into the list's goal as a support group you must ask permission of the list owner before posting, and the message should meet the following requirements: 1.The content is appropriate to the list and provides a clear benefit to the members. 2.Any benefits the sender may obtain are specifically stated. 3.The sender should be willing to share the same information or resources without material benefit. If your message does not meet these criteria you should only write about what you are doing in a social context. If other members wish to pursue additional information about your topic it should be done outside of the list. LIST SETTINGS AND COMMANDS There are a number of commands you can use to personalize your subscription to CFS-20s. These commands are processed automatically so follow the instructions exactly, or if you need help contact the listowner at cfs-20s-request@listserv.icors.org For complete descriptions of the commands and settings available, read the online files LISTSERV REFCARD and LISTSERV GENINTRO, which can be obtained by sending the following commands in the body of a mail message to LISTSERV@LISTSERV.NET: INFO REFCARD INFO GENINTRO To contact the list owner, email cfs-20s-request@maelstrom.stjohns.edu and your mail will be forwarded to the appropriate person. How to send a command All of the following settings may be changed using the same procedure. Send an e-mail message to listserv@listserv.icors.org. In the BODY of the message type set cfs-20s followed by the command. Each description includes an example. The Subject of the message does not matter, it can be left blank. DIGEST Mode The default setting is to receive each post individually. The digest feature allows you to receive several posts as one message, or "digest", instead of separately. To receive your messages this way, please send the command: set cfs-20s digest To go back to receiving individual messages set cfs-20s nodigest Going NOMAIL Nomail is a setting that allows you to remain subscribed to the list, but to no longer receive posts. This is good for if you are going away or otherwise unable to check your e-mail for a bit. While no-mail, you are also able to post to the list, just not receive any messages. This allows you to post from several addresses if you so desire. Just subscribe the extra address and set it to no-mail. To go no-mail, send the command: set cfs-20s nomail To go back to receiving messages again, send: set cfs-20s mail Topic Prefixes See also Sending mail to the list - Using the subject line. The current topics available are SOC: for social things, HUM: for humorous posts and jokes, and OTHER: for everything else concerning CFS. The OTHER: prefix isn't necessary as everything without a prefix falls under that, and this is expected to include anything having to do with CFS, like coping, asking for support, medical topics, etc.. When you are subscribed, you are automatically set to receive all topics. Adding or subtracting subjects is very easy. Send the command like this: set cfs-20s topics: -topicname/+topicname For example, if you don't want to receive SOC: postings, you would send the command: set cfs-20s topics: -soc or if you weren't receiving SOC: postings and want to add them back, the command would be: set cfs-20s topics: +soc If you wish to receive all topics again, just sent the command: set cfs-20s topics: +all Subscribe and Unsubscribe If you have been sent the welcome letter, you have probably already been subscribed to the CFS-20s list. If you are considering unsubscribing because you can't keep up with the mail, read about the NOMAIL setting and the CFS-buddy program first. The format for these commands is a little different, the command comes first. To unsubscribe, send the command unsubscribe CFS-20s To subscribe to CFS-20s send subscribe CFS-20s Yourfirstname Yourlastname replacing Yourfirstname and Yourlastname with your first and last names. Note that the CFS-20s subscriber list is viewable only by the listowners and will be kept private. When you first subscribe, your membership will be moderated. This means that when you send a message to CFS-20s it will be viewed by a member of the board before being posted to the list. THE #CFS-20s IRC(Internet Relay Chat) CHANNEL We no longer have an IRC channel. CFS-20s DIRECTORIES AND RESOURCES The following features are 'extras' to the cfs-20s list. You don't need them in order to participate, but they enhance the cfs-20s community. CFS-20s Website The CFS-20s webpage is located at http://www.angelfire.com/me4/cfs20s/ The site includes lots of useful information about CFS-20s. If you need to contact someone about CFS-20s, e-mail cfs-20s-request@listserv.icors.org. CFS-20s Member Directory and Birthday Directory The member and birthday directories are no longer maintained. CFS-20s Address Book The CFS-20s Address Book is another feature inspired by CFS-Y. It is a list (which will only be posted on-list, and not on any web pages) of e-mail and snail mail addresses, as well as ICQ, IRC, and AOL IM nicknames. This is a voluntary listing, and you may submit as much or as little information into it as you feel comfortable. Some just have their name, e-mail address and IRC nicknames, where as others also have their snail mail address, etc.. It is entirely optional, so if you don't wish to be in it, that is ok as well. Should you wish to be a part of the CFS-20s Address Book, just e-mail your information to Janelle at p75kat@MEGSINET.NET. CFS-20s Buddy System If you leave the list because you are unable to keep up, but wish to maintain some contact, there is the CFS-20s Buddy System. is in charge of this and looks after volunteers who write to those who leave the list but wish to remain in contact. Please contact at for more information on either volunteering to become a buddy, or requesting one if you are leaving the list. CFS-20s Web Ring Members may wish to connect their websites through the CFS-20s Web Ring. For information please see the CFS-20s web site. CFS-20s Voice Gallery Members may share a message in their own voice on the internet in the CFS-20s Voice Gallery. For information please see the CFS-20s web site. CFS/ME/FMS-RELATED MAILING LISTS, ETC. If you are interested in other CFS/ME/FMS-related mailing lists, check out the ones listed on the CFS-20s website. If you have trouble accessing the site, you can ask to have this information sent to you by e-mail instead. ACRONYMS AND ABBREVIATIONS Here are some of the Acronyms and abbreviations you may see used on the CFS-20s list and especially on IRC. If you don't find what you're looking for here, just ask the sender what they meant. Common CFS/ME/FMS-related acronyms AWAP......As Well As Possible CFS.......Chronic Fatigue Syndrome CFIDS.....Chronic Fatigue and Immune Dysfunction Syndrome DD........Disabling Disease, D@mn Disease, Darn Disease, etc. dx/dx'ed..Diagnose / Diagnosed EBV/CEBV..Epstein Barr Virus / Chronic EBV EI........Environmental Illness FMS.......Fibromyalgia Syndrome GF........Glandular Fever GWS.......Gulf War Syndrome IBS.......Irritable Bowel Syndrome MCS.......Multiple Chemical Sensitivity ME........Myalgic Encephalomyelitis MPS.......Myofascial Pain Syndrome NMH.......Neurally Mediated Hypotension POTS......Postural Orthostatic Tachycardia Syndrome PWC.......Person With CFIDS RLS.......Restless Leg Syndrome SOTS......Systematic Orthostatic Tachycardia Syndrome TTT.......Tile Table Test (used to dx NMH) YPWC......Young Person With CFIDS Common General Internet Abbreviations AFAIK ....As Far As I Know AFK ......Away From Keyboard AKA ..... Also Known As ASAP .....As Soon As Possible ATM ......At The Moment AWAP .....As Well As Possible B4 .......Before BAK ......Back At Keyboard BBL ......Be Back Later BCNU .....Be Seeing You BFN ......Bye For Now BRB ......Be Right Back BTW ......By The Way CUL8R ....See You Later eg .......Evil Grin F2F ......Face To Face FAQ ......Frequently Asked Questions FWIW .....For What it's Worth FYA ......For Your Amusement FYI ......For Your Information ......Grin or Giggle GBH ......Great Big Hug {} or () .Hugs HAND .....Have A Nice Day HTH ......Hope This Helps IAE ......In Any Event ICBW .....I Could Be Wrong IDK ......I Don't Know IIRC .....If I Recall Correctly IMAO .....In My Arrogrant Opinion IMHO .....In My Humble/Honest Opinion IMNSHO ...In My Not So Humble Opinion IMO ......In My Opinion IOW ......In Other Words IRL ......In Real Life ISTR .....I Seem To Recall J/K ......Just Kidding or Joking L8R ......Later LOL ......Laughing Out Loud LMAO .....Laughing My a** Off OBTW .....Oh By The Way OIC ......Oh, I See! OT .......Off Topic OTOH .....On The Other Hand PMFJI ....Pardon Me For Jumping In rehi .....Hello Again ROTFL ....Rolling On The Floor Laughing ROTFLMAO .Rolling On The Floor Laughing My @$$ Off SO .......Significant Other SOL ......Sh*t Outta Luck SOS ......Same Ol' Sh*t (or Stuff) SYL ......See You Later TIA ......Thanks In Advance TIC ......Tongue In Cheek TNX ......Thanks TTFN .....Ta Ta For Now TTYL .....Talk To You Later TYVM .....Thank You Very Much WB .......Welcome Back WTH ......What The H*ll WYSIWYG ..What You See Is What You Get ACKNOWLEDGEMENTS ** Our very special thanks to Bek Oberin (Goss) and the ADDult Internet mailing list for providing a guideline for these rules, and to Goss for setting up/keeping the original list running with her Tech Goddess skills -- More special thanks to Jaime Wellman and CFS-P for all of their help as well -- A huge {{{HUG}}} of thanks to Roger Peacey, Rebecca Bailey, and Emily Ellis for seeing the CFS-20s Board of Directors through its first year -- More thanks go to Rebecca for originating the CFS-20s Photo Gallery, Mackenzie for originating the CFS-20s Web Ring and for looking after the CFS-20s Photo Gallery after Rebecca, Roger for compiling the #cfs-20s IRC FAQ and serving as board member for the list's first three years, Heather followed by Dorthy for helping with the Directory and Birthday Lists, and to Joanne for originating the CFS-20s Voice Gallery -- Many thanks and hugs of appreciation to Robyn, our "Founding Mother", for founding the list, originally authoring the list rules, and being listowner through the tough formative first year and for looking after the original web page and IRC channel. Thanks to Roger for designing the website and to Patrick for maintaining it. A score of hugs and thanks to Patrick, who helped ygg with the lengthy switchover and many thanks to former board members. Final thanks must go out to ICORS for providing us with the LISTSERV and hosting CFS-20s ** ________________________________________________________ The CFS-20s Homepage: List Rules, Commands, and Welcome Letter http://www.angelfire.com/me4/cfs20s/ ________________________________________________________ This document was last updated by Jocelyn Pace, December 2006. This document was last posted to CFS-20s on November 23, 1999