Guidelines to Follow Correct Etiquette on Discussion Board
The following are a few guidelines to use. These suggestions will help all of us to have a healthy and encouraging interaction, to be less confused about who is who, and will keep the messages readable.
Respect - Our number one "rule" is to always show respect for others in what you post, and particularly in how you respond. Sometimes discussions can "hit a nerve" and your reaction is to start typing fast and furious - please consider waiting a few hours, until the next day, or perhaps even using the delete button instead of sending off a quick response. We are here to encourage, support, and educate each other with our experiences. We all are suffering and have bad days and better days. Please be patient when others have those same ups and downs.
Privacy - We are a family and when we share it is expected that we will honor each other's privacy. It is not OK to talk about people and experiences shared on this list with others or behind people's backs (i.e. off-list). Part of being a family knows that we can get through the "tough stuff,” the disagreements, the troubles, and still love & encourage each other. Sometimes you may want to share message information with a medical professional or some other person. You must remove all personally identifying information before sharing any information is this way.
Replies - Don't feel like you need to reply to every message you receive. If we all replied to everything, it would be too hectic. On balance, it is good for the "lurkers" to speak up every once in a while. We do want to know about you and your families. Sometimes just saying thanks or that you have the same experience is beneficial to you and to the others to know that they are not alone in their experience, feelings or reactions.
Quoting Styles - We allow both "top replies" and "bottom replies". Most of us prefer top replies as they are easier to read (a big topic of debate in some circles), but however you want to participate is OK.
Changing the Subject - Message content tends to drift away from the original topic after a while. Please don't change the subject unless it no longer matches the content of the message or your reply. Making the subject applicable to the message content can help us to find messages later ("Backfilling Questions" is much more insightful than "Drug Questions"). Please don't change the subject to put a person's name in it - list messages are really for the benefit of everyone and while your comment might be directed to only one person everyone will be reading. When changing a subject it's courtesy to make the new subject: ": "New Topic - [was: Old Topic]". Some of us can use software that "threads" messages - i.e., it pulls messages together by the subject so that we can follow "threads" of messages even when they don't all arrive at once. If the topic of a message changes as it is replied to over time - feel free to change the subject and keep going. Don't change the subject every time, though as that is too confusing. Blank subjects are not good,
Quoting Earlier Message Content - Please don't quote the entire message that you are replying to. Only quoting a few sentences that apply is good. Your e-mail software will allow you to delete the lines of the prior message that are not germane to the ongoing discussion. Remember that others will have seen the prior message just like you have.
Message Signature – Don’t forget to sign your message with your first name, and the first name of the person and their age. This helps us to keep track of each other and to not be confused by who is who. It gives us reinforcement every time we read a message. For example: Regards, Dean (Lindy - 20).
Deleting Messages - Always feel free to delete a message. If we use good subjects then you will generally know what you are missing without having to read the message. Some messages might be too close to home for you to read - it's OK to skip them by deleting. We all have emotional boundaries and time constraints.
Topic of Discussion - All topics are OK. We have talked about Do Not Resuscitate Orders, decisions to have or not have a treatment, decision on care, etc. Some topics may be particularly sensitive to others depending on what's happening in their life at that moment. We promise that we all will have differing opinions on various issues - it's the variety that we can learn from - but YOU DO NOT need to always agree. Likewise you do not need to feel obligated to convince someone of your opinion either. Please remember - we are here to share and care for each other while respecting each other.
Read the Entire Thread Before you Respond - Before you respond to a message that really impacts you, consider reading the subsequent replies that others might have already written, if any. That way you can reply to the entire discussion, not just an early message. What you have to say might have already been stated. This is particularly valuable when there is a lot of discussion going on. Sometimes we need to say me too,” other times we don’t.
Acceptance of Other's Decision & Beliefs - Please do not assume that your experience is someone else's. One thing that this list has taught us is that no progression of CADASIL is the same as any other. Be open to hearing how someone else's experience might have been - it could be what you experience next week! Likewise - if someone speaks firmly and is in contrast to your experience or knowledge - please remember that we all have some tunnel vision - We do not believe that anyone here intends to offend anyone else (if they do we can and will take care of that off-list). Try to not react by pounding out a message as soon as you are offended. Wait a few hours - try to understand what the intent, oversight or experience of the author was prior to assuming that they meant to hurt anyone else. Then reply gently!
Formatted/HTML Messages – Please consider formatting e-mail (colors, fonts, bold, etc.) is not preferred. Even though it's pretty, some folks cannot read formatted mail. Plain or "normal" mail is the lowest common denominator.
Attachments & Pictures - The discussion lists do not allow attachments or pictures.
List Moderation - This list is not moderated in real time meaning that as soon as you push SEND, your message immediately goes all over the world and cannot be recalled. It is up to each of us to “self-moderate” -- if there are a lot of messages being sent or strong emotions or opinions being shared – please remember that your quick reply might just be adding to the situation. Our “self moderating” request is that you write your e-mail, and then perhaps wait a few minutes, re-read it, and then reconsider if you want to push SEND. With that said – feel free to share, always with respect for others, how you feel or are reacting to what others are saying. The list host does read all list messages and reserves the right to moderate or remove individuals that cannot comply with the etiquette described above as the health of the list members as a whole take priority over any one individual.
Restricted Posting & List Membership Revocation – If these common sense rules are not respected, the list hosts will contact you and ask for your cooperation. Should concerns persist, the list hosts could restrict your posting abilities or revoke your list participation privileges completely.
Thank you in advance for making this forum successful for all.