MPN-NET – We Welcome You
An Online Support Group for Myeloproliferative Neoplasm Disorders:
We invite you to become a subscriber to this un moderated discussion list for patients, family and friends to discuss clinical and non clinical issues and advances pertaining to agnogenic myeloid metaplasis (primary myelofibrosis), chronic myelogenous leukemia, essential thrombocythemia, myelodysplastic syndrome, myelofibrosis and polycythemia vera.
Our discussions include patient experiences, psychosocial issues, new research, clinical trials, and discussions of current treatment practices and alternatives. The principal focus is expected to be information and reassurance for patients and loved ones.
This list is entirely free, and is run completely by volunteers. While some of the messages will be devoted to announcements and discussions of medical advances, as well as to therapeutic treatment, both main stream and alternative; the main focus of the MPN-NET Mailing List is intended to be a forum for patients with Myeloproliferative Neoplasm Disorders and their loved ones to exchange experiences on coping with the disease and to gain information which is often hard to find.
SUBSCRIBING
When you subscribe to MPN-NET you join a group of approximately 3000 patients, caretakers, doctors, nurses, and/or social workers from over 38 countries who share information about diagnoses, treatment possibilities, options and alternatives. No specific medical advice will be provided for individuals. That must be discussed with one’s own medical practitioner. However, suggestions for clinical trials, treatment possibilities, cancer centers, and patient experiences with each of the above, are grist for the MPN-NET mill.
To SUBSCRIBE email: listserv@listserv.acor.org subject: blank (if you’re on AOL use a dash) message: subscribe MPN-NET your first and last names.
POSTING
Once you have joined our list you are encouraged (if you feel like it) to send a note to the list to introduce yourself. Do include specific details about your disease or that of your loved one, if you are seeking help, so that the responses from the list can be relevant to your situation. The answers to your post may be relevant to many on the list. So please be sure that you disable the reply to your email address in your mail program. Otherwise answers will go directly to you. Please do not be reluctant to post your questions and responses. Many of us are in the same situation. Do not worry about typos or spelling. Do not let these concerns keep you from the help that the mailing list can provide.
SECURITY
One must join (subscribe) to be able to post to the list. Only the owners of MPN-NET can determine that you are subscribed. No one else can retrieve the list of subscribers. Only subscribers can send email to MPN-NET and only subscribers directly receive email distributed by the MPN-NET listserv. Posts on the MPN-NET are not searchable via the public internet. However, other subscribers can see your posts, so please consider this when sending email to MPN-NET.
PROBLEMS?
If you have any problems, don’t be frustrated. Just write your friendly list owners and you will get help:
Address:
mpn-net-request@listserv.acor.org
Subject – Short description of your problem Message – Detailed description of your problem
MESSAGING ETIQUETTE
- When you ‘reply’ to a message, make sure you look at the header and reply to whomever you really want to reach. It is easy, accidentally, to reply to the list when you meant to reply to an individual – and this can be quite embarrassing at times, depending on your message.
- Be brief; reread before sending; cut and paste so you quote just that part of an initial message needed for clarity when replying. If you are using the digest please
- CHANGE THE SUBJECT HEADING
- from: MPN-Net Digest-Date
- to: disease, subject, or individual being replied to
- In that way, your response will be associated with the original post that appeared on MPN-NET and archives searching will be facilitated. This should also make it easier for those who prefer to concentrate on only one disease.
- Do try to make the subject line succinct and meaningful. It certainly helps people make selections about which messages to read first.
- Also, please cut and paste the key parts of the message to which you are responding instead of including the entire thing. This keeps the digest shorter and saves money for those who pay by message length.
- NO COMMERCIAL POSTING OR ADVERTISING OF ANY KIND are permitted. NO SURVEYS may be posted without permission from the List Managers.
- Rude or inappropriate messages will not be tolerated, and could lead to removal of your subscription.
- If you have a conflict with anyone, settle it by private email. If you are upset or angry, wait a few days before answering.
- Humor does not carry over well in email, at times. Many people manage this by adding a smiley face at the end of a line. They can be in many forms, but one typical one is 🙂
- If your signature is in a file, try to keep it reasonably short. Recommended length is no more than 4 lines.
- Please configure your email client appropriately. Turn off fancy fonts, and other word processor features.
- Use hard line breaks that keep your lines shorter than 70-75 characters.
- Be careful if you prepare your message with a word processor and then paste it into an email client; the email client may interpret your paragraph as a single long line.
- Microsoft Mail users should should turn off RTF.
- Pegassas mail users should delete the space after the caret when using the reply function.
- Netscape mail users should change their mail option from allow 8 bit to mime un coded – quotable and printable. All users should select plain text instead of html.
- If you send a message in html, there will be all sorts of coding in the text and then the message with html codes will appear below.
DISCLAIMERS
Information posted to this mailing list is for educational purposes only and is not intended to replace or give any medical advice or treatments. Any information pertaining to your health should be reviewed with your personal healthcare professional. No liability, explicit or implied, shall be extended to the owners, maintainers, or subcontractors of this listserv location for messages posted to the list. The owners make no assurances of the accuracy and/or the relevancy of the information posted to this list or to information referred to by messages to this list.
MPNinfo.org is a resource of the MPN Education Foundation.