Forum Support Groups
ListServer Support Groups | Web Forum
Netiquette for Support Groups | Support
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.
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
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
- 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.
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
Overview of E-Mail Lists & Web Forums
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
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!
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
on the ANA USA e-mail group support lists can be found at E-Mail
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
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.
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
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.
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
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
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
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, ;-)
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
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
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.
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
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:
C. Owen via PageServant@Neurosurgery.MassGeneral.org
Return to the
Service Web Site
Referrals to MGH Neurosurgery or to other
services at the MGH (MGH Physician Referral
MGH, and the Boston Area
In & Around MGH" ~ The NeuroScience Units