BrainTalk Communities Inc FAQ

Here you can find answers to questions about how the board works. Use the links or search box below to find your way around.

What are the Terms of Service for the BrainTalk Communities?

Please read this carefully. If you register for this webforum, then you must accept these terms:

By using this website, you acknowledge and agree to the terms of the Official Disclaimer and Privacy Policy of BrainTalk Communities, Inc.

Use of this site does not constitute an attempt to practice medicine. Use of the site does not establish a doctor-patient relationship, and individuals should consult a qualified health care provider for medical advice and answers to personal questions.

IF YOU HAVE A SERIOUS MEDICAL/NEUROLOGICAL PROBLEM, CONSULT A PHYSICIAN IN PERSON FOR PROPER CARE!

These forums are NOT an appropriate place for threats to commit suicide, hurt yourself, or self-injury. If you are feeling depressed and wish to share your feelings, that is encouraged! If you are feeling suicidal, contact a professional suicide counselor immediately by telephone. A website that lists suicide crisis centers and emergency hotlines around the world can be found at the hopeline network

This is a continuing effort by BrainTalk Communities, Inc. to foster online discussions between patients, caregivers and physicians about various Neurology-related topics. Please feel free to post any questions or comments.

These forums are NOT designed to be places where you can get unlimited medical advice. Rather, the forums are primarily intended to foster discussions between interested patients, caregivers, and physicians. These are OPEN FORUMS. That is, anyone can participate, and we want to provide a place where people can discuss medical issues freely. If you wish to remain ANONYMOUS, please do NOT enter your real name when registering. Also please remember that all posts here are viewable by anyone on the Internet, and posts may be indexed by global Internet search engines (e.g., Google).

While the site attempts to remain current, health care information changes rapidly and thus the site should not be relied upon as comprehensive or error-free.

This site reserves the right to change its disclaimer or other terms and policies, so users should review these periodically. Current versions can be found on the privacy and general disclaimer page.

Considering the real-time nature of this bulletin board, it is impossible for us to review messages or confirm the validity of information posted. Please remember that we do not actively monitor the contents of posted messages and are not responsible for any messages posted. We do not vouch for or warrant the accuracy, completeness or usefulness of any message, and are not responsible for the contents of any message. The messages express the views of the author of the message, not necessarily the views of this BB or any entity associated with this site. Any user who feels that a posted message is objectionable is encouraged to post a message in the Forum Feedback area of the forums. We have the ability to remove objectionable messages and we will make every effort to do so, within a reasonable time frame, if we determine that removal is necessary. This is a manual process, however, so please realize that we may not be able to remove or edit particular messages immediately.

You agree, through your use of this service, that you will not use this BB to post any material which is knowingly false and/or defamatory, inaccurate, abusive, vulgar, hateful, harassing, obscene, profane, threatening, invasive of a person's privacy, or otherwise violative of any law. You agree not to post any copyrighted material unless the copyright is owned by you or by this BB. We reserve the right to delete any user and/or user posts for any reason whatsoever.

Although this site does not and cannot review the messages posted and is not responsible for the content of any of these messages, we at this site reserve the right to delete any message for any or no reason whatsoever. You remain solely responsible for the content of your messages, and you agree to indemnify and hold harmless this site, BrainTalk Communities, Inc. and their agents with respect to any claim based upon transmission of your message(s).

Please note that general advertisements, chain letters, pyramid schemes, and solicitations for money are inappropriate on this site. Posts about commercial websites ARE allowed if the products are directly relevant to a specific conversation about a neurological disorder, but using the forums for the sole purpose of advertising for ANY commercial product is NOT allowed."

If you are a writer/researcher...PAY ATTENTION to this part:

Scientific and medical research is essential to improving the well-being of patients and caregivers around the world. Recently, there have been scientific and medical researchers who are increasingly interested in the online interactions between patients and caregivers in public patient support groups such as these forums. As part of this research, such scientists may wish to passively observe the interactions between people online here, and to analyze the general content of the discussions in order to perform a behavioral analysis that may shed light on what patients and caregivers truly need to live healthier lives.

In other words, "online research" (studying how patients and caregivers interact in public forums like this one) is fundamentally a GOOD thing, since it can ultimately help the well-being of people and advance the understanding of medical science.

However, there is always the potential for abuse. Researchers may decide to "secretly" record personally identifying information they read, or worse...they may think that the people online are "guinea pigs" to be "experimented" on and could actually make up imaginary topics or illnesses in order to "test" people's reactions.

Also, people such as students, writers, or market researchers may wish to "use" the forums for their own personal gain by "harvesting" data and publishing the results.

Such activities do NOT help medical research. And they can HURT the patients and caregivers here by eroding their sense of trust and privacy.

These forums and chatrooms are FOR PATIENTS AND CAREGIVERS to find support and help. That is the paramount goal. Therefore, it is my OFFICIAL POLICY that I cannot allow anyone to use these forum for any kind of research or behavioral studies (either PASSIVE LISTENING or ACTIVE PARTICIPATION) without my explicit consent or the consent of the specific individuals in the forums.

If you are a researcher/writer and you wish to "study" these forums to advance some type of medical research or to write some paper/book, you MUST CONTACT ME before you do anything here. You must FAX ME (617-726-2353) a detailed and signed copy of your proposal, including all references, methods, and co-author information. I will review it, and if I feel that it is a valid proposal, I will make a public announcement in the specific forum you wish to study and I will see if the USERS here wish to participate. After I hear from the users, I will make my FINAL decision on whether or not to allow the research/study to begin. You will be required to sign a legally binding document that guarantees you will adhere to our mutually agreed-upon conditions of your study of the forums.

There can be NO EXCEPTIONS to this. I must protect the true purpose of these forums (patient and caregiver support), and while I value medical research very highly, I will not allow any experiments that take advantage of people to happen here. These forums and chatrooms are filled with REAL PEOPLE. This is a sea of conversations and sharing and support...it is not a petri dish.

If you are a member of the press and wish to write a general story about these forums/chatrooms, then these rules DO NOT apply to you. However, if you plan to interact in ANY way with the users here, or you plan on including quotes from conversations, or you plan to ASK people questions...then you MUST follow the conditions I have described here.

If any researcher/writer VIOLATES this policy, I will consider it not only a breach of my Terms of Service, but I will not hesitate to pursue legal action against them. I'm very serious about this.

The Association of Internet Researchers is in the process of forming a task force to draft international guidelines for researchers who want to conduct research on the Internet. If you'd like to learn more, please visit their website at http://aoir.org/

A few points about compassion, tolerance, and personal beliefs...

These forums are like REAL communities in the REAL world...they are filled with people with different opinions about many different things. This includes different opinions about religion, politics, science, favorite colors, ...everything!

Now, these forums are MOST IMPORTANTLY filled with people dealing with DIFFICULT medical problems. Serious medical problems that can cause emotional distress and even chronic physical pain.

This is a PRIMARY cause for ARGUMENTS, because it can cause people to say things they might not REALLY mean...this can cause people to post things sometimes out of ANGER....and this ANGER is MOST OFTEN NOT really intended as anger towards individual people. This anger arises because people are angry at the DISEASE, or angry BECAUSE the disease can make them short-tempered and frustrated.

Sadly, this can sometimes translate into arguments....flame sessions between people of different opinions...and anger that can appear to be directed at other people.

Arguments happen! That's OK. We're human beings, and we sometimes argue.

BUT

Please remember how this anger can start, and please try to STOP it when it flares up out of control.

Feel free to AGREE to DISAGREE with people. But you MUST let people have their opinion and allow them to state it without attacking them personally.

This INCLUDES opinions about those TWO MOST ARGUABLE topics in the world...religion and politics.

Political debates are NOT appropriate here, because they are typically very volatile and disruptive. These debates and arguments are not appropriate for a community that is focused on providing support for people dealing with neurological illness. If you want to debate politics, please use a different forum on the Internet.

Religion, however, is a different matter altogether....

Religion is an important part of the healing process for many people here, and it is important that people be given the chance to integrate their religious beliefs and spiritual expressions into our online communities. This goes for any religion, naturally. The Chapel here is a place EXCLUSIVELY for expressions of a religious and spiritual nature. But people are free to express themselves spiritually in any forum here. At the same time, people who are expressing their religious beliefs have to be aware that not everyone will share those beliefs. People should tolerate each other's beliefs in a non-judgemental manner. Naturally this means that any kind of blatantly excessive religious posting or attempts to convince other people that their religion (or lack thereof) is wrong simply cannot be allowed. Such posts damage the community at large because they can be DISRUPTIVE, and NO kind of disruptive posting is allowed in the BrainTalk Communities.

These forums are full of DIVERSE people with different beliefs, and people have to respect that diversity. For the sake of everyone and their own personal beliefs, people should not make large numbers of posts of a purely religious nature on non-religious threads. At the same time, if people see threads that involve individuals praying with each other to help each other deal with a difficult medical situation, please remember that people who choose to share their religious feelings in the context of providing support for a neurological illness should be given that opportunity (as long as it is not intentionally disruptive to other non-religious threads). If you don't agree with their beliefs, then simply don't participate.

Some communities solve this "religous tolerance" issue the EASY way. They simply ban ALL cases of religious expression. Other online communities do this, and in the physical world, for example, you cannot have nativity scenes on public property in some states and you cannot have prayers in public schools. While I COULD do this with the BrainTalk Communities, I do not WANT to, since I feel spirituality of EVERY kind is a VITAL part of the support and healing process...and that's what the BrainTalk Communities are all about...a place to find support and healing. Rather, I'm simply asking for tolerance from EVERYONE, and to remember that these communities exist for people to find SUPPORT while dealing with serious neurological illnesses. This isn't a place for trying to win arguments or debates (neither religious nor scientific), but it IS a place for us all to learn more about human tolerance and to practice it to the best of our ability.

These forums are for SUPPORT. And the ONLY way we can get that support is if we follow the path of TOLERANCE for ALL beliefs, be they spiritual or simple matters of opinion. Without tolerance and acceptance, there will never be ANY support for anyone.

And if someone sounds irrationally angry and a bit argumentative, REMEMBER that they are most likely dealing with a serious medical issue, and try to understand the REAL medical reasons they might be angry...

The real purpose of these forums is to extend knowledge and support to people who have concerns with neurological problems, in a warm, caring, kind, and sheltered environment. One where people feel safe to come and talk about their problems, and share.

Abusive posts, attacks, "slamming," and obscenities (irrelevant of context or cultural attachments) have no place here.

This is a place to come and seek help, or to come and give help. It is not meant to be a battleground or a free-for-all debating society. Kindness and helping should be our watchwords. Our good manners, decency, and civility are welcome and NEEDED here more than anything else.

Lastly, if users connect to the BrainTalk Communities using illegally accessed network resources such as open proxy servers without the proxy server administrator's explicit permission, their account will be deactivated immediately, the server added to the banlist, and the incident reported to the server administrator. Of course, there are many LEGITIMATE proxy servers that people use (such as AOL's), but I am specifically referring to improperly configured "open" servers that allow anyone on the Internet to use them as a proxy server without entering a username and password. Also, as a general rule to limit the potential for abuse, accessing this server via anonymizing services is not permitted.

What is the PURPOSE of these forums? How should we "behave" on them?

A few points about compassion, tolerance, and personal beliefs...

These forums are like REAL communities in the REAL world...they are filled with people with different opinions about many different things. This includes different opinions about religion, politics, science, favorite colors, ...everything!

Now, these forums are MOST IMPORTANTLY filled with people dealing with DIFFICULT medical problems. Serious medical problems that can cause emotional distress and even chronic physical pain.

This is a PRIMARY cause for ARGUMENTS, because it can cause people to say things they might not REALLY mean...this can cause people to post things sometimes out of ANGER....and this ANGER is MOST OFTEN NOT really intended as anger towards individual people. This anger arises because people are angry at the DISEASE, or angry BECAUSE the disease can make them short-tempered and frustrated.

Sadly, this can sometimes translate into arguments....flame sessions between people of different opinions...and anger that can appear to be directed at other people.

Arguments happen! That's OK. We're human beings, and we sometimes argue.

BUT

Please remember how this anger can start, and please try to STOP it when it flares up out of control.

Feel free to AGREE to DISAGREE with people. But you MUST let people have their opinion and allow them to state it without attacking them personally.

This INCLUDES opinions about those TWO MOST ARGUABLE topics in the world...religion and politics.

Political debates are NOT appropriate here, because they are typically very volatile and disruptive. These debates and arguments are not appropriate for a community that is focused on providing support for people dealing with neurological illness. If you want to debate politics, please use a different forum on the Internet.

Religion, however, is a different matter altogether....

Religion is an important part of the healing process for many people here, and it is important that people be given the chance to integrate their religious beliefs and spiritual expressions into our online communities. This goes for any religion, naturally. The Chapel here is a place EXCLUSIVELY for expressions of a religious and spiritual nature. But people are free to express themselves spiritually in any forum here. At the same time, people who are expressing their religious beliefs have to be aware that not everyone will share those beliefs. People should tolerate each other's beliefs in a non-judgemental manner. Naturally this means that any kind of blatantly excessive religious posting or attempts to convince other people that their religion (or lack thereof) is wrong simply cannot be allowed. Such posts damage the community at large because they can be DISRUPTIVE, and NO kind of disruptive posting is allowed in the BrainTalk Communities.

These forums are full of DIVERSE people with different beliefs, and people have to respect that diversity. For the sake of everyone and their own personal beliefs, people should not make large numbers of posts of a purely religious nature on non-religious threads. At the same time, if people see threads that involve individuals praying with each other to help each other deal with a difficult medical situation, please remember that people who choose to share their religious feelings in the context of providing support for a neurological illness should be given that opportunity (as long as it is not intentionally disruptive to other non-religious threads). If you don't agree with their beliefs, then simply don't participate.

Some communities solve this "religous tolerance" issue the EASY way. They simply ban ALL cases of religious expression. Other online communities do this, and in the physical world, for example, you cannot have nativity scenes on public property in some states and you cannot have prayers in public schools. While I COULD do this with the BrainTalk Communities, I do not WANT to, since I feel spirituality of EVERY kind is a VITAL part of the support and healing process...and that's what the BrainTalk Communities are all about...a place to find support and healing. Rather, I'm simply asking for tolerance from EVERYONE, and to remember that these communities exist for people to find SUPPORT while dealing with serious neurological illnesses. This isn't a place for trying to win arguments or debates (neither religious nor scientific), but it IS a place for us all to learn more about human tolerance and to practice it to the best of our ability.

These forums are for SUPPORT. And the ONLY way we can get that support is if we follow the path of TOLERANCE for ALL beliefs, be they spiritual or simple matters of opinion. Without tolerance and acceptance, there will never be ANY support for anyone.

And if someone sounds irrationally angry and a bit argumentative, REMEMBER that they are most likely dealing with a serious medical issue, and try to understand the REAL medical reasons they might be angry...

The real purpose of these forums is to extend knowledge and support to people who have concerns with neurological problems, in a warm, caring, kind, and sheltered environment. One where people feel safe to come and talk about their problems, and share.

Abusive posts, attacks, "slamming," and obscenities (irrelevant of context or cultural attachments) have no place here.

This is a place to come and seek help, or to come and give help. It is not meant to be a battleground or a free-for-all debating society. Kindness and helping should be our watchwords. Our good manners, decency, and civility are welcome and NEEDED here more than anything else.

Thanks for taking the time to read this. I hope it we can all move ahead, agreeing to disagree whenever appropriate, and allow everyone to express themselves. Regardless of our own individual beliefs, we can still HELP EACH OTHER. And that's the whole point of these forums.

What are BTC's Policies on suicide announcements??? What should I do if someone is SUICIDAL and posts a message saying, "I'm going to kill myself right now."; What if *I* am feeling suicidal?

If someone posts a message on the forums saying in effect that "I'm going to kill myself right now," then you should tell them that they should contact a professional suicide counselor immediately by telephone. If you are feeling suicidal, CALL SOMEONE RIGHT NOW. Disconnect from the Web and call 911 or the operator. You need to talk to someone right now...preferably in person, but at the very least on the telephone. Please remember that these forums are NOT an appropriate place for threats to commit suicide, hurt yourself, or self-injury. If you are feeling depressed and wish to share your feelings, that is encouraged! If you are feeling suicidal, contact a professional suicide counselor immediately by telephone.

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The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.