"The Rules of the Road"
Bulletin Board Policy/Etiquette
The Dystonia Medical Research Foundation (DMRF) sponsors this board to encourage patients with all forms of dystonia - particularly those who do not have access to a "in person" support group - to share their experiences and frustrations. It is intended primarily for patients and their families rather than health care providers or other professionals, although they are always welcome to drop in and visit.
All messages on this bulletin board and the chat room represent the personal opinion of the individual posting the message. The Dystonia Medical Research Foundation and the moderators do not assume any responsibility for verifying the identity of any participant or for the content of any message posted here. Nothing on this bulletin board or the chat room should be considered medical advice.
The "Chat Room" attached to the bulletin board is for the convenience of registered members. The chat room is not moderated. Neither the DMRF nor the moderators assume any responsibility for anything posted in the chat room.
An examination of history indicates that some rules are necessary to guide most human interactions. Experience has shown that this bulletin board is not exempt from this need. Bob Campbell, Mary Beth Chan, Linda Walking Woman and Jeff Harris have been appointed by the Foundation to coordinate Internet activities. One of their duties is to moderate the Dystonia Bulletin Board by defining rules and enforcing them. The moderators are not here to swoop down and punish you for infractions of the rules. However, they will delete or modify postings that detract from the ability of the group as a whole to achieve its goals.
Comments and suggestions about the bulletin board can be directed to the moderators via the Comment Form. Although the moderators will read all comments, please realize that they do not have the time to get into a discussion of, or justification for, every action taken. The moderators are like baseball umpires. Not every call is perfect but it is final.
The following guidelines presented in the form of a FAQ are not arbitrary. Rather, they are designed to help make this an informative and productive group and to prevent recurrence of past problems
IMPORTANT: This bulletin board is not a crisis intervention center. If you are undergoing a crisis of some sort, you can find some suggestions in the message Are you feeling severely depressed or suicidal?. A link to this page always appears at the top of the main page of the Dystonia Bulletin Board.
What other sources of on-line information are there about dystonia?
- There is a lot of medical information in the DMRF Web pages. Links to numerous other on-line resources can also be found at the DMRF site.
- Can I ask a dumb question?
- Most of the people who participate in this board knew little or nothing about dystonia before being faced with it in themselves or a loved one. So, newcomers tend to ask very basic questions. The advantage of a support group such as this is that, in addition to newly diagnosed patients, it contains people who have lived with dystonia for many years. We don't have all the answers but we have a wealth of experience about coping with the condition.
- Should I change my medication/treatment?
- In reading or commenting about specific medications or treatments, keep in mind that what is right for one person is not right for another, and that a doctor should be consulted before changing medication or treatment.
- I don't like what X wrote. I'm going to tell her off!
- We do not attack anyone for complaining or feeling sorry for him/herself. Dystonia can be devastating. We are anxious to help members to find better ways of coping with the things that upset them. If you disagree with what someone wrote, feel free to do so - but please do so in a civil, polite way. If a post is inappropriate for the bulletin board, the moderators may decide to delete it.
- I don't agree with or believe what X said.
- Keep in mind that the opinions expressed in postings on this board are those of the individuals making the postings and thus do not necessarily reflect the views of the DMRF or currently accepted medical thinking. We each come to this board with different personalities, symptoms and backgrounds. Please take what you like and leave the rest.
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- What about this new therapy?
We often discuss questions like, "I read an article by Dr. Y who suggested ABC", or "My doctor wants to try treatment X - anyone had experience with it?" These threads are totally appropriate - we can discuss ABC or X. If the treatment is experimental or unproven, please say so, but that does not mean it may not be discussed.
- What do you think about alternative treatments?
- Because there is currently no known cure for dystonia and even the best of the regular treatments are only partially effective, many patients search for additional relief outside the standard medical sources. A variety of treatments have been tried, including manipulation, diet, herbs, food additives, magnets, relaxation techniques and spiritual approaches. From time to time, individual patients will report some success with one of the alternative approaches, but no pattern has developed through the years of any one method permanently helping a number of patients. The Foundation does not discourage patient experimentation, and we often discuss promising methods of treatment.
- Is advertising allowed?
- We do not allow advertising of proprietary products or services. There is a definite danger of desperate and vulnerable patients being victimized by either well meaning or unscrupulous purveyors of unproved or ineffective claimed treatments or cures. Advertisements or posts which, in the opinion of the moderators are direct "plugs" for commercial products are not permitted, and will be deleted. On the other hand, in the context of a legitimate discussion if a member feels that a link to a commercial website will be useful to readers, that link may be included in a post. However, the post should include a caution that the link is to a commercial site. In addition, if the product advertised is experimental or unproven, that information should be included in the post as well.
- Can I talk about things other than Dystonia?
- There are hundreds of bulletin boards and chat rooms on the internet, but this is one of the few about Dystonia. We're glad to help people "connect", but the BB is a dystonia forum, not a "chat room". At times, discussions which may have started as a question or "venting" related to dystonia moved so far afield that a reader who had not followed the whole conversation might wonder why it appeared on a discussion board related to dystonia. Posts that do NOT relate to dystonia may reduce the effectiveness of the bulletin board by pushing "legitimate" dystonia messages to the 2nd or 3rd pages (where very few people seem to read), or become so pervasive as to hide from a "newbie" what the board is "really" about.
- A balance is important. Some off topic discussions are valuable, because they help build a sense of community. We are proud of the way members of the BB help each other, with advice and with "virtual hugs" when they need it; but we want to ensure that bulletin board can perform our main function - information and support. Therefore, we ask you to use the BB to "make contact" with people who have common "non-dystonia" interests, but then continue the off-topic discussion via e-mail, Instant Messenger ("IM") or "chat room". For those with dystonia and some other ailment, we ask that you try to focus your questions here on the dystonia "part" of your health, and discuss the other condition on websites or bulletin boards dedicated to those conditions.
- As part of our normal housecleaning of the BB, we will delete off-topic posts that are more than a few days old. That will enable people to "connect", and then move the discussion to a more appropriate medium.
- I'm looking for a new doctor. Do you know any?
- Because of geographic diversity, generally we refer people to the Dystonia Medical Research Foundation for doctor recommendations. They have a large database of doctors known to have experience with dystonia. Posts like, "If you have SD call my doctor, X, he's great" are not really appropriate - remember the people here are from all over the world, and your doctor in New York is not the best choice for a patient in Chicago, Denver or Melbourne.
- However, you should realize that the fact that a doctor's name appears on the DMRF list is not a recommendation. Doctors can ask to appear on the list, and the foundation does not "screen" or interview them. You should ask all the questions you would if a doctor was recommended by your insurance company or a stranger, and not assume that because a doctor is on the list he or she will be the right doctor for you. Questions like personality, inter-personal style, cost and insurance coverage are things only you can judge.
- Is he a good doctor?
Most people talk about their doctors, and we are no exception. Questions like, "I've been referred to Dr. X - has anyone heard of him/her" are entirely legitimate, and will often yield many comments. In general, the idea is to provide general information that might help group members evaluate a doctor's style or approach to treatment, but not to attack an individual. Remember, there are laws against libel and slander, and the internet is a public forum. You may wish to provide more details by e-mail.
- I like to communicate with other dystonia patients but I don't like this format.
- Different strokes for different folks. There are a number of other dystonia forums. Please note that the DMRF does not sponsor these other forums, and assumes no responsibility for them or their content.
- Separate bulletin boards for patients with specific forms of dystonia. We know of specific boards for patients with:
- There is a "chat room" as part of the BB software. Some members like to go into the chat room for real-time conversations. Just click the "chat" icon at the top of the main menu of the BB. Scheduled chats are sometimes announced on the BB.
Keep in mind that the chat room is unmoderated, and we assume no responsibility for anything that happens there. Be sure to read the instructions for technical requirements and other warnings.
- A web chat room at http://www.wemove.org/chat
- How is my privacy protected?
- A bulletin board, by its very nature, is a public place. Everything you post can be read by anyone who wants to read it, anywhere in the world. You should be aware that anything you post could turn up in "Google" or another search engine if someone were to search on the words you use, or even your name if your post is signed. We encourage you to use the BB to share your thoughts, feelings and experiences but we caution you to use good judgment. Please bear in mind:
- The internet is anonymous, but if you give your full name you lose your anonymity. If you are concerned about privacy, you might register using your first name and initial or some other "handle", in place of your full name. In order to enable members of the group to get to know and trust each other, at least by pseudonym, we urge you to be consistent and use the same alternate name all the time.
- If you send personal information via e-mail to someone you meet on line, either in a message or in response to a "survey" of some type, keep in mind that you have no control over how, where, or to whom that information is distributed.
- NEVER give your home address or telephone number in a public post. If you feel comfortable with a particular member of the board, you can send your address or telephone number to that person by e-mail.
- Your friends, co-workers, employer and family may read the bulletin board without your knowledge. Don't say things that might prove embarrassing (or worse) if they were known to people around you. In at least two cases, we have heard of bulletin board posts being cited as evidence in legal proceedings.
- Be careful about attacking someone over the internet. Most states and countries have laws against libel.