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Web Forum Support Groups
Patient-to-Patient Services
MGH Neurosurgical Service

E-mail ListServer Support Groups | Web Forum Support Groups
Netiquette for Support Groups | Support Groups
How to Subscribe

We now host a growing number of Web Forums. They are based on E-Mail Support Groups. They are web forum and e-mail based server systems that allow you to Subscribe and/or Unsubscribe to web forums & e-mail mailing lists that will provide information about neurosurgical related diseases, disorders and treatments from a "Patient-to-Patient" perspective.

The Web Forums are:

These web forums are based on the E-Mail ListServer lists:

You can use either method (E-Mail ListServer or Web Forum) or both to access "Patient-to-Patient" information about neurosurgical related diseases, disorders and treatments.

There are a number of issues that should be considered before you join these or any E-Mail List or Web Forum Support Groups:

  • These E-Mail List/Forum Support Groups are designed as a Patient-to-Patient information resource. Some lists may also have a number of professional members that watch, listen and occasionally respond to posted questions. Information directly from MGH Neurosurgical Service may also be posted to members of these lists. The opinions expressed in these MGH Neurosurgical Service E-Mail Support Groups are the opinions of the individuals involved. They do not reflect any official opinions or positions of MGH Neurosurgical Service.
  • MGH Neurosurgical Service is not engaged in rendering professional medical or other healthcare services. All medical and other healthcare information that is discussed on any of these lists should be carefully reviewed by the individual reader and their qualified healthcare professional. Any actions taken based on the information found in the MGH Neurosurgical Service E-Mail Support Groups are entirely the responsibility of the individual and healthcare professionals involved in such actions.
  • Unlike the MGH Neurosurgical Service GuestBook, the messages will be posted only to other members on the list. Any messages that you submit to these E-Mail List Support Groups will be public messages and will be posted to other members of the list (i.e., they should not be considered private mail). Message archives will be made but they will not be available to the public.
  • The membership of these lists will not be made available to the public. However, if you post e-mail messages to these lists, your e-mail address will be available to all others on the list. If you feel that you have been harassed, either by e-mail, regular mail, by telephone, or in any other way, by someone on this list, please report it to the PageServant - the "List Owner" is the MGH Neurosurgical Service. Anyone engaging in any form of harassment will be unsubscribed.
  • Netiquette: There are standard rules of etiquette that apply to those who subscribe to these e-mail lists. Please see the basic guide to Netiquette as a condition of joining any of these lists. These rules may change at any time so please refer to the page indicated.
  • List User Guidelines: Additional rules as a condition of joining these lists may apply depending upon the specific list. Please see the individual ListServer Lists below. These rules may change at any time so please refer to the page indicated.

Web Forum Use Guide
Web Forum & List Guidelines

Overview of E-Mail Lists & Web Forums
and
Information for New Subscribers

    Welcome to the Web Forums & E-Mail ListServer Patient-to-Patient Information service! This Web Forum & E-Mail ListServer was established as a Patient-to-Patient support group for those with interest in a variety of Neurosurgical related disease processes and Neurological disorders. The list is hosted by Massachusetts General Hospital (MGH). These guidelines were developed, however, by the subscribers of previous E-Mail ListServer syetems. The opinionms expressed on these Web Forums and E-Mail Lists do not necessarily represent the views of MGH, or the MGH Neurosurgical Service. Please see the standard disclaimer. The forums/list are consider be self-monitoring.

    Subscribers are persons with interest in Neurosurgical related disease processes, Neurological disorders and treatment options whether as a patient, physician, friend or relative, etc.

    If you're newly diagnosed, get ready for good information from people who have been through the process or are in various stages of handling the disease themselves. You will find not only information, but also some inspirational talk, and even some laughs. You might find people whose experiences include specific treatments and doctors that mirror your situation. Or if you are not a patient yourself, we hope you will find the information and discussions helpful to your needs, hatever your situation. Please feel free to dive right in with your questions and comments!

    Important: this information supplements but does not replace or override any information on the list posted at the MGH Neurosurgical website. These guidelines are subject to change at any time. The current guidelines for this list will be posted to this page. The MGH Neurosurgical can be found at MGH Neurosurgical Service.

    Information on the ANA USA e-mail group support lists can be found at E-Mail Support Groups

    Again, none of the opinions or information on this list qualify as medical advice. For medical advice, consult your physician(s).

Purpose and Use of the List

    Purpose and use of the list -- This list does not give medical advice.

    This list is intended as a "Patient-to-Patient" resource. It should not be used for advertising of services, personal gain, or marketing other commercial services. Again, it is intended to be a "Patient-to-Patient" resource for group support of issues relating to Acoustic Neuromas.

    It is important to understand that this list in no way constitutes medical advice. Your choice of treatment, or indeed whether to receive treatment at all, rests with you and your physician(s).

    We know that each individual patient has differing needs, concerns, desires, and medical situations. The information on this list may help you learn the opinions of other patients, and may suggest questions you can ask of your doctors or research yourself, but it is not medical advice.

    You don't have to post messages to the list but you are strongly encouraged to share your thoughts and experiences. The more information that is shared, the better. And whatever your questions, you will find many persons willing and eager to provide information and suggestions -- and most of all, strong moral support that comes from a shared medical problem! You are definitely not alone.

How to Subscribe & Post Messages

    If you are reading this, odds are you have already subscribed to the lists or web forums. But in case you haven't, please see E-mail List Support Groups for the E-Mail Lists, or go directly to the forums. Directions on how to use the Web forms are on those web pages and self explainatory.

    When you send your e-mail to the List or Forum, your message will go to the whole group of subscribers. So, dive right in with any question or suggestion you like, jump into the middle of an ongoing conversation, or just enjoy the e-mails and forum that will be coming to you as a subscriber to the list.

Attachments to posts

    Generally, do not send messages with attachments. Attachments often cause problems with some e-mail systems. If it is a short attachment, insert it instead into the body of the message. If it is a long attachment, let people know you have them and that they can write to you instead of sending the attachment to the list.

Avoid Posting The Same Message Twice

    It's common for all of us to occasionally post the same message twice. Here's how you can avoid this. When you are responding to a previous post you typically choose a "respond to all" or similar feature depending on your browser or e-mail system. However, if you do this, you may be responding to the list and also to the person that originally posted the message.

    This can cause duplicate posts being received by some recipients. Therefore, make sure your posts are addressed only to List/Forum orto the originalposter (and of course any other individual e-mail addresses you want to include).

How to Reply to a message

    Generally, if someone writes you off list, do not post their message to the list. They may have assumed that it was a private message to you. Posting those messages to the list sometimes also causes confusion since the thread of the message is missing from the current discussion on the list.

    Carefully read the e-mail header information on messages that you receive or plan to reply to. Checking the header "Reply-to", "From" and "Reply" addessess will insure that your posts go where you intend to send them.

How to Unsubscribe

    To unsubscribe, send an e-mail message to:
      LISTSERV@brain.mgh.harvard.edu
      containing only
      UNSUBSCRIBE ListName
      in the message body. Note: Nothing else should be in the body of the message. The AN-Info List server will respond with a mail message indicating the success or failure of your attempt.)

      You may also use the web forum to unsubscribe.

Netiquette and Getting Posts Read (see also Netiquette)

    Here are some tips that may assist you in posting productive messages.

    1. See the MGH Neurosurgical Service E-Mail & Web Forum Core Rules of Netiquette Take some time to look over netiquette (net etiquette) guides. You can also find info on Netiquette at http://www.albion.com/netiquette/corerules.html.

    2. Curious about those symbols like ROFL and ? Here's a place you can look them up at http://homepages.enterprise.net/clyne/acronyms.html

    3. Always use a subject line. The more focused your subject is, the more likely it will get the attention of other subscribers on the list. For example, a post with the subject may not get as many readers and responses as the same post if the subject is . If you change the subject or add a new topic, then change the title of the subject so that others can follow the new thread (a series of responses to the same original post).

    4. When you are responding to a thread leave the subject the same as the original post. This is how readers can follow a topic and read all the responses to it. For example if the original post is the responses will carry the subject . If you then changed the subject on your response to you will probably still get readers, but it will not be clear to folks on the list that you are following the same thread. If you change the subject or add a new topic, then change the title of the subject so that others can follow the thread.

    5. Above all, remember that e-mail is impersonal and lacks the many non-verbal cues we see when talking face to face. Use of symbols like :-) for smiling or joking, ;-) for winking or teasing, :-0 for mock surprise or shock, can help replace seeing someone's face to some extent. But the safest route is to be tactful and diplomatic, keeping in mind how easily words can be misunderstood between two people who do not know each other and cannot see each other's faces.

    6. If someone posts a message to you directly (that is, off the list), most folks do not consider it proper for you to then forward the message to the list as this tends to violate some privacy. To handle this situation, you might consider some alternatives. For example, say someone contacts you off list with some information you would like to have others give their opinions on. You might simply post your own message to the list saying you had a question on ... (and describe the question).

    7. Try to keep discussions focused on facts and debates about facts. There is no need, and no merit, to conjecture on the motives, financial investments, age, maturity, good or ill will, preference of types of coffee, or other supposed traits of anyone on the list. We don't wish to "flame" (write derogatory personal attacks) about one another or make presumptions about each other. We want to share information. Example: challenging a person's facts or asking for sources of information is not an attack; telling them they are missing half their brain is an attack. (That's AN humor, BTW -- by the way -- and just kidding, ;-)

    8. Remember to post your messages just to the correct list or web forum. If you do this, everyone currently subscribed to the list will see your message. If you address it to the above address *plus* to the private e-mail addresses of folks on the list, they will receive double messages from you.

    9. When responding to a thread, it is helpful if you put your new message at the top of your post, then people will not have to read or scroll through the previous post to find your new message. Because it's always a challenge to keep new information clearly separate from old, it is suggested that you not interweave your new thoughts through the previous message. It gets very confusing for readers.

    10. As a rule, do not post attachments unless someone asks you to, and then consider posting to just that person. An attachment can take time to download on a slow modem and viruses are always a concern. Remember, probably very few are running on 56.6 modems :-).

    11. Keep messages as short as you can and to the point.

    12. Send thanks, words of encouragement, congratulations, etc. to the person off list rather than posting the message to the individual to the entire list.

Guidelines for Messages

    The following are guidelines for messages. The list is self-monitoring, which means the subscribers work together to keep the list functioning well in terms of communication. The following principles should serve to keep most interchanges productive and to help insure there is a high quality of information for new and old patients alike and that there is a diverse set of opinions and experiences shared on various issues.

      1. We do not give medical advice. The opinions on this list do not constitute medical advice nor in any way substitute for it.

      2. We respect the diversity and dignity of each person's individual choices, beliefs, stories, problems, and successes.

      3. We do not promote any mode of treatment. We recognize that different treatments are appropriate for the different needs, wishes, and situations of different patients.

      4. We seek to nurture and support others emotionally and spiritually in our own unique ways through the difficulties and challenges associated with AN.

      5. Whenever we share statistics on treatments and outcomes, we try to cite references so others may research the data for themselves.

      6. We are committed to expanding the knowledge of AN through sharing of data, literature, and experiences.

      7. We are open to questions and do not seek to suppress debate. We recognize that valid questions may be asked of the data presented by ourselves or others.

      8. If discussions evolve into interpersonal conflicts that focus on persons and not AN issues, the parties in conflict should move off list to resolve the matter.

      9. We tolerate ambiguity, recognizing that not all doctors and not all patients agree on what might be the best course of action for a given patient or situation.


Any suggestions for additions to the Web server should be forwarded to:
PageServant C. Owen via PageServant@Neurosurgery.MassGeneral.org

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