AA-MDS-TALK: Frequently-Asked Questions
Why did AA-MDS-TALK Change?
Web-based forums systems like Marrowforums use newer technology and are much more flexible than email-based listservs like AA-MDS-TALK. Forum systems are more easily accessible, increase privacy, provide many methods of searching, improve performance, and allow many simultaneous threads of discussion. They also allow members to exchange messages in private.
Even though the AA-MDS-TALK listserv was familiar to its members, we believed that the advantages of Marrowforums greatly outweighed the inconvenience of re-registering and learning to use a forum system. When we created Marrowforums, many listserv members joined the community in its new home. The AA-MDS-TALK moderators became administrators of Marrowforums.
See Listservs vs. Forums below for a detailed comparison of listservs and forum systems.
What is a Forum System?
Forum systems, which used to be called bulletin boards, are Internet websites. Anybody who visits the website can browse through or search any forum sections made publicly available. There may be private forum sections as well, requring registration and in some cases invitations.
Anybody who registers for a forum system (Marrowforums registration is is free) can participate in the forums by posting messages. Visitors who register are called "members".
To register for the forums, you specify an email address and select a User Name and password. Once you are registered, you do not need to send or receive email. Instead, you read or write posts directly in your web browser. Your email address remains private and is not shown to other members; they see only the User Name you selected.
Forum discussions are organized into forums (topic categories) and each forum has many threads (conversations on specific topics). In each thread, one member posts a specific question or comment and others post to answer the question or discuss the topic. At Marrowforums, the forum topics include AA, MDS, PNH, Drug Treatments, Transfusions and Iron Overload, Transplants, Clinical Trials, and many others.
There can be many threads active at once, and you can read and/or participate in whichever you like. You can also ignore threads that are not of interest to you. There are a number of ways to identify and track the threads you want to participate in, including a New Posts feature, a thread subscription system, daily or weekly digests, and email notifications.
Forums are searchable, so you can find previously discussed topics by searching for words of interest. You can also search by date or User Name and search within particular forums or threads.
What Happened to the Old Listserv Messages?
The archive of listserv messages from 2002 was moved to Marrowforums. It is accessible only by registered members. The messages submitted to the listserv by email in 2002 appear as if they had been posted (in "forum style") in the AA-MDS-TALK Archive forum at Marrowforums. Messages from 2003 to 2006 are not available.
The AA-MDS-TALK Archive at Marrowforums is not visible to the unregistered public or to search engines like Google. This maintains the level of privacy afforded by AA-MDS-TALK. (See the Privacy Policy for other information about how we work with you to protect your privacy.) The other Marrowforums forums (all forums except the AA-MDS-TALK Archive) are publicly viewable.
The AA-MDS-TALK Archive is closed to new posts but can be browsed by year and month and searched by keyword.
Listservs vs. Forums
Forum systems such as Marrowforums are based on newer technology than listservs and have many more features and conveniences. Here is a summary of the major differences:
Technology Email. Web browsers.
Software required A properly-configured email program. AA-MDS-TALK members often needed help in configuring their email software and problems often resulted from quirks of the various email programs. Any web browser.
Organization One single ongoing discussion. Forums (broad categories) and threads (specific topics).
Submitting a message Members send email to the listserv address. Members can start new threads for new topics and/or reply to other threads using a form on a web page.
Editing Once a listserv message is sent, it cannot be changed or retracted. Forum members can edit or remove their posts after the fact, to correct errors or remove information they didn't mean to post.
Privacy Member names and email addresses are revealed to all other members. Email addresses are kept private. Only a User Name selected by the forum member is shown to others. Members can choose to use their full name, their first name, or a nickname or pseudonym.
Downloading Members must download all messages, or a digest of them. Members can read whichever messages they are interested in in their web browser, one page at a time, without having to pick up email or wait for downloading. Every time they visit the site or click to display a web page, the newest posts are there, as are all previous posts.
Selection Members must skim all messages to find those of interest. Members can choose which threads to participate in and which to ignore.
Tracking Listservs do not track which messages you have read or have found to be of interest. The forum system can indicate for you which posts you have already read and can notify you when new posts are made to particular threads.
Searching Listserv archives are searchable by words in messages, by date, and by sender address. Forums are searchable by words in posts, by words in thread titles, by date, and by User Name. Searching can be across all forums and threads or within particular forums or threads. Results can be shown as a list of threads or as a list of posts. Public forums can be searched using search engines such as Google.
Moderation Listserv moderators have limited control over listserv messages because they cannot change them once they are sent to members. Forum administrators (see Meet the Administrators) can edit, rename, or remove threads or posts to help members, correct posting problems, protect privacy, keep unwanted posts such as advertisements out of the forums, and enforce the Forum Rules.
Email Listservs email you all messages submitted by all members. By default, forums send you no email, other than during the registration process. However, you can choose to enable forum features that use email: instant email notification of forum activity, daily or weekly digests, or the receipt of email from other members.
Private communications Private communications between listserv members are limited to email. Forum members can send Private Messages to each other without revealing their email addresses. They can optionally choose to allow other members to send them email or Instant Messages.
Ownership AA-MDS-TALK was hosted by the America Online Listserv system (discontinued in 2011) and was subject to its restrictions. Marrowforums was created by three members of the bone marrow failure disease community. The owners of the site were able to tailor it to best meet the needs of bone marrow failure patients and their families.
Archives AOL did not retain the oldest AA-MD-TALK messages, from 1996-2001, so they were lost to us. Marrowforums can saved its own history (2006 and on) and the data retained from the AA-MDS-TALK Archive.
Other features None. Marrowforums has an associated website with general information, a list of medical resources, an extensive list of Frequently-Asked Questions, and a section for Member Profiles.