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Narcolepsy InterNet Welcome Information and FAQ |
This email-based discussion group is a distribution list for people with narcolepsy, their partners and families, and care-providers for those who suffer from narcolepsy. Its charter is to act as an electronic support group and a place for dissemination of information about narcolepsy. We discuss things like treatments for narcolepsy, new research, coping with narcolepsy, and simply how it feels to live with narcolepsy.
The Internet is a place filled with many people; some are good, some not so good. Some are well meaning but unfortunately, unable to play well with others. This is a *private list* and its "owner" wants clear communication to be available to all its subscribers without risk of abuse by unwanted messages, harassment in public, or having their words and writings posted to public forums without their consent. All participants are encouraged to remain focused on the primary charter for this discussion list and refrain from unnecessary or extraneous discussions in the list itself. (Private, off list discussions are encouraged.)
Below you will find information how to use this list, guidelines for acceptable use and behavior, and some frequently asked questions -- with answers.
Please read this message in full. Please take your time and try to understand each section. If you have any questions, please send email to owner-narcolepsy@lists.mv.net. If in doubt, better to ask me first, rather than expose the list to unwanted traffic. Failure to abide by the guidelines stated below may result in your exclusion from this list, please make sure you understand these guidelines.
The discussions in this list may be received in two formats.
If you subscribe to the regular list, you will get messages throughout the day in the form of email "from" each person who sends their message to the list. The "reply-to" field is set to the original poster. The "Sender" is owner-narcolepsy@lists.mv.net.
There are a lot of messages each day on narcolepsy, some of our readers have been overwhelmed by this volume of mail. For those people, the digest option is a solution.
Those who subscribed to the digest get a mail message sent once a day at 3AM (in the eastern US time zone). In this one message is all of the messages sent to narcolepsy@lists.mv.net for the preceding 24-hour period. If you are primarily just reading this list and don't expect to post, this may be your best option.
If you want to get the digest and are presently on "narcolepsy", or you wish to change from the digest to the more interactive "narcolepsy you may want to have the list owner (owner-narcolepsy@lists.mv.net) do this for you. Since all subscribe requests must be approved, there could be a "lag time" between when you request to be moved from one format to the other.
If you subscribe to narcolepsy, send email to majordomo@lists.mv.net and in the body of the message say:
unsubscribe narcolepsy
end
If you subscribe to the narcolepsy-digest, send email to majordomo@lists.mv.net and in the body of the message say:
unsubscribe narcolepsy-digest
end
To participate in a discussion, send email to "narcolepsy@lists.mv.net". If you just "reply" to the message you receive from this list, by default your reply will go to the individual who posted the message; if you get the digest, the email will bounce. Your mail program may be configured to send email to the individual and the list simultaneously. If you feel your message would be of interest to the rest of the list, then please include us in the discussion. If your message is private, please just send email to the individual.
Those who receive the digest version of the list will have to create a "new" message when they wish to reply to a topic. The digest includes the posters' email address so that you can address your comments directly, if you desire. If you wish to participate in a general discussion, address your message to "narcolepsy@lists.mv.net". Please make sure that the subject line in your message is appropriate for the topic you are addressing. Please *never* include the whole digest in your message. You may want to quote parts of this digest for "context".
When replying to a message on the list, try to include "less" of the original message than you contribute. You should not quote 50 lines of text and reply (to the list as a whole) with a single "me too".
Do not send attachments of any kind to the list.
Do not send "formatted text" to the list. Not everyone can read it -- and it does cause some problems for digest readers.
Please read "Acceptable Use" section below.
Sometimes a machine will go down between "MV.NET" and your internet provider. When that happens, all mail to you is returned to "sender" -- in this case,the owner-narcolepsy account at MV. Addresses that bounce are rather quickly removed from the distribution.
There is nothing personal about that -- its a normal function of administering a large list.
If you feel that you have been cut off, you can send email to majordomo@lists.mv.net and in the body of the message say:
which
end
This will return a list of "which" lists at MV.NET you subscribe to. If majordomo does not find you listed, it may be that you are subscribed with an address "slightly" different that the one that your present messages indicate. (Some schools and corporations have "clusters" of machines and you cannot control your return address. Sometimes you have an alias for your return address. An example of an alias is "owner-narcolepsy "). If you do not find yourself on the majordomo server, feel free to send "owner-narcolepsy@lists.mv.net" a note asking if you had been removed for network troubles.
Also, there have been brief moments when everyone on the list took a nap. It happens. :-)
Archives are available through the majordomo server.
To get a list of what files are available, send email to majordomo@lists.mv.net and say in the body of your message:
index narcolepsy
end
Once you determine which files you want, again send email to majordomo@lists.mv.net and in the body of the message say:
get narcolepsy <filename>
end
The membership list of this forum is private. Nobody but the system administrators at MV Communications and the list owner have access to this list. It is not available to anyone else.
Individual privacy is considered one of the most important aspects of this list. If you violate a persons privacy you will be excluded from participation and denied access to this list in the future.
If you only "read" the discussions here, your identity and email address will never be revealed. If you participate, your email address will be revealed to those who read this list. If you wish to make an "anonymous posting", send email to "owner-narcolepsy@lists.mv.net" with your message appended to a request that it be sent anonymously. If the message is not abusive or inappropriate, the list-owner will forward it to the group.
If you deliberately expose who participates in this forum in a public discussion group (like alt.support.sleep-disorders) without the permission of *all* those who you are exposing, you will be excluded from participation.
If you take writings posted here and post them to other forums or publish them in any way *without the original author(s) permission*, you will be excluded from the list.
This list is maintained in the United States. Under US copyright law, all materials published in this forum are copyrighted by the *original author* of the posting. (The person in the "From" field.) The list owner does not retain *any* copyright control over content published in this forum.
This discussion group is not moderated. The list owner does not accept responsibility for the accuracy or appropriateness of the email sent to this group. If material is found to be deliberately misleading, is offensive to the general readership, or is considered abuse -- the list owner will consider excluding the individual who is responsible for this material.
Anything dealing with narcolepsy, coping with narcolepsy, treating narcolepsy, living with narcolepsy, and improving your quality of life -in spite of- narcolepsy is considered appropriate material.
What is not considered appropriate material are topics that have nothing to do with narcolepsy, or any posts that are abusive (see below). Particular note should be made that any message that starts with "send this to as many of your friends" is likely not appropriate for this forum. Any chain mail letter posted to this forum will result in an immediate revocation of your subscription to this forum. Seasonal greetings, cute humor notes (that have nothing to do with narcolepsy or sleep disorders), and insider jokes will be actively discouraged.
When replying, trim as much of the original message as possible. This is typically done by replacing the deleted text with the tag: "<snip>". Leave just enough of the original message so that the "context" of the discussion is kept. Again, you should *never* include the whole digest in a reply.
Do not reply to the list as a whole and say "me too" (or something equivalent). This is fine as a private reply but need not be included in general discussion.
Do not send "test messages" to the list of any kind. If you feel that mail isn't getting to you, check your subscription (see use of the majordomo "which" command above) and/or send email to the list owner.
Do not send attachments of any kind to the list. Sometimes you might want to point people at an FTP or WWW site where they can see an image, hear something, or download some program. Just send the URL (the pointer) to a file, do not send the whole file. If you do not have access to a site to put a file, mention you have it available and have people ask you for the file (privately). Some digest users have selected to have attachments "rejected" automatically. By including an attachment, you are denying them access to the whole day's conversation.
Do not send "formatted text" to the list. Not everyone can read it -- and it does cause some problems for digest readers. Some email programs will default to formatted text. You can change this behavior through settings usually found in a menu option called "options" or "preferences". If your email program asks if you wish to send the text with 'formatting stripped out', 'formatted text' or 'both' please select the 'formating stripped out' option.
Please remember that people with narcolepsy may not be able to easily sift through many mail messages each day. Some people do not read their mail each day. As such, if you are not adding anything to the public conversation, keep your replies private. Finding the balance between public and private replies can be hard. You may want to read the list for some time and a get a feel for this balance before jumping into a conversation.
Mistakes happen, the list owner is not harsh or unforgiving. (At least, not always and often. :-) If in doubt, check your actions with the list owner before proceeding.
Humor is encouraged. Use of "emoticons" or "smileys" is encouraged. These "electronic hieroglyphs" help describe emotion in a note. The most common is ":-)" which means "humor" or "smile" or "something said in jest" or "sarcasm". More are listed in the Narcolepsy InterNet FAQ on TLA's and Smileys at URL: http://www.narcolepsy.org/faq.tla.html. The FAQ is semi-regularly posted on the list.
For instance: "Its so nice of the list owner to spell out appropriate use so clearly to us. :-)"
These symbols and other abbreviations used frequently in this forum are frequently posted and are available at the Narcolepsy Internet's WWW site (http://www.narcolepsy.org).
Humor that has nothing to do with the current topic(s), sleep disorders, or narcolepsy probably should be in rec.humor and *not* on this list. Humor that is simply "cute bantering" should be done in private.
There can be times that topics need to be discussed that can cause readers discomfort. Some particular examples include: "religion", "sex", "dating a person with narcolepsy" and "morality". Of course, we have had fairly caustic discussions about "the best pet for a person with narcolepsy" and "parenting as a person with narcolepsy".
Some of our readers may be less than 18. Undoubtedly, some of our readers do not have the same moral values and religion as you.
Be sensitive to each other's feelings. Respect each other differences.
When approaching these topics do not be vulgar, crude, or callous. Please be careful about any sarcasm or attempt at humor. The list owner reserves the right to cut off a topic if it causes too much distress.
On the other hand, be aware that the person who is sending a note to the list probably is not trying to cause you hurt or insult. Don't get immediately offended. Maybe the person forgot to put a "smiley face" in the text of the message -- indicating humor. Maybe its there, re-read the note. Instead of replying to the whole list immediately in an emotional way, take some time away, think about the note. Then write to the individual, privately, and ask for an explanation.
Remember, people cannot see your face. You cannot see theirs. You might inadvertently cause hurt feelings with a quick or sharp reply. Think about what you are saying and how it may be read. Sometimes, if you are angry or emotional, it is better to "file" the reply for later. If after a nap or some good rest you still think its reasonable, then send the reply off.
Sometimes material is posted to "narcolepsy" that may or may not be true. The Internet is often called the "net of 1000 lies". While we can assume that the participants of narcolepsy are not deliberately lying, the reader must be aware that no one has all the answers. Even things that work for one person may not work for another. Take all "facts" posted to "narcolepsy" with the knowledge that they may be incorrect or at best, misunderstood concepts or theories. There are participants who are involved in the forefront of narcolepsy research. There are also many participants who are laymen just trying to make sense of a very confusing condition called "narcolepsy". Under no circumstances should information received from the list be taken as medical advice. You should consult your doctor before making any changes in your treatment.
Be open, but beware.
Foul language is consider abuse.
Repeatedly posting off-topic material is consider net-abuse.
Advertising is considered abuse. (Exceptions may be made for narcolepsy specific material approved directly be the list owner. Send email to owner-narcolepsy@lists.mv.net for more information.)
"Bantering" and "harassment" is considered abuse.
"Flaming" is considered abuse.
Abuse will result in your subscription to narcolepsy being suspended without warning..
This list can provide contacts for local support groups, national support organizations, and is a great place to learn about different treatment options. If you are presently having trouble with your care provider, many people here have been through this. We might have ideas that can help -- at least we can identify with your situation.
*Know that you are not alone.*
If you are new to the Internet, you may want to read over "EFF's Guide to the Internet". There are many copies around on the World Wide Web, one copy can be found at: http://colossus.mathcs.rhodes.edu/eegtti/eeg_1.html
There are many things you can do. Just participating is one major way you can help. If you know ways to cope you can pass on that knowledge to someone who does not! If you have a skill, like computers, you might be able to help someone who is struggling to use their machine. You can "meet" through the mailing list and then take specific questions outside of the list.
You can surf the web and find new WWW sites for Narcolepsy InterNet's readers. You can submit an annotation to owner-narcolepsy@lists.mv.net for inclusion in the lists "JumpSite" at URL: http://www.narcolepsy.org/narc.links.html
Maybe you can "explain" some of the confusing medical jargon.
Maybe by sharing your experience, others can identify with you and gain hope.
In addition, encourage the friends you make on the list and the other participants on the list to follow the guidelines set here. We are community. Disruptive behavior in a community harms us all. No one person can "force" good behavior. We have to encourage each other to be polite.
Send private mail to: owner-narcolepsy@lists.mv.net. He will try to help as best he can. (Basically, he can help in discussion "use" of email lists and maybe help you with problems you are having with your computer.) If he cannot help, he will try to refer you to someone or some agency that can help.
The term "list owner" is imposed by the software used to manage the list -- Majordomo. It is now a term that has entered into internet vernacular usually meaning the "human" who takes care of "exception handling". This list is hosted by MV.COM -- an Internet Service Provider -- voluntarily for one of their customers, Dana Groff. He manages and maintains this list as a volunteer. The list was created for him as a restricted access discussion group. That means, he controls who can subscribe.
As such, in a very real sense, this list is owned by Dana Groff. He is neither big or bad. But since *any* large email list can get out of hand, he has decided to take an active role in managing this list. The attempt is to provide a forum that is supportive without exposing the participants to outside criticism and abuse. Further, the hope is that he will *never* have to exclude anyone from this list. All he asks is that you think before sending a message to this list. You are *his guests* here, please act appropriately.
Dana is a person with narcolepsy who has been running email distribution lists on the Internet since 1984. He is not politically correct and is willing to venture an opinion. If things start to get out of hand, he will usually start with a warning. (It is highly recommended to heed his warning.) Since he usually does all maintenance activities in the evenings, do not worry if he does not answer your request for assistance immediately.
Comments, corrections and enhancement suggestions are encouraged.
Maintained by: owner-narcolepsy@lists.mv.net Last modified: 24 August 1998Permission is granted for this document to be reproduced for individual or non-commercial use provided that it is reproduced intact. This document is also available as a text-only document.