Please treat this discussion forum with the same respect you would a public park. We, too, are a shared community resource — a place to share skills, knowledge and interests through ongoing conversation.
This site is a virtual community intended to be a safe place for patients and family members as young as age 13, to visit for information, discussion, and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are young people and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey and we try to help each other.
Though we get occasional visits from medical doctors, the site is not routinely supported by medical professionals. Nobody here can diagnose you or tell you what your treatment choices “should” be. We might inform your choices by sharing individual experiences and information developed by study as laypeople. But this community is not intended to replace the advice or treatment of licensed medical professionals. Readers should validate any information they take away from here, against the experience of a licensed medical doctor. Site owners and moderators are not legally responsible for the accuracy of information shared on the site.
Visitors should also be aware that our discussion forums and groups are publicly accessible and searched by Google. Your speech here should be considered “public”. If you’re tempted to write something about another person that you wouldn’t say to their face, then we counsel you to think first. Speech can be consequential.
These are not hard and fast rules, merely guidelines to aid the human judgment of our community and keep this a clean and well-lighted place for civilized public discourse.
Help us make this a great place for discussion by always working to improve the discussion in some way, however small. If you are not sure your post adds to the conversation, think over what you want to say and try again later.
The topics discussed here matter to us, and we want you to act as if they matter to you, too. Be respectful of the topics and the people discussing them, even if you disagree with some of what is being said.
One way to improve the discussion is by discovering ones that are already happening. Spend time browsing the topics here before replying or starting your own, and you’ll have a better chance of meeting others who share your interests.
You may wish to respond to something by disagreeing with it. That’s fine. But remember to criticize ideas, not people . Please avoid:
- Ad hominem attacks
- Responding to a post’s tone instead of its actual content
- Knee-jerk contradiction
Instead, provide reasoned counter-arguments that improve the conversation.
The conversations we have here set the tone for every new arrival. Help us influence the future of this community by choosing to engage in discussions that make this forum an interesting place to be — and avoiding those that do not.
Discourse provides tools that enable the community to collectively identify the best (and worst) contributions: bookmarks, likes, flags, replies, edits, and so forth. Use these tools to improve your own experience, and everyone else’s, too.
Let’s leave our community better than we found it.
Moderators have special authority; they are responsible for this forum. But so are you. With your help, moderators can be community facilitators, not just janitors or police.
When you see bad behavior, don’t reply. It encourages the bad behavior by acknowledging it, consumes your energy, and wastes everyone’s time. Just flag it . If enough flags accrue, action will be taken, either automatically or by moderator intervention.
In order to maintain our community, moderators reserve the right to remove any content and any user account for any reason at any time. Moderators do not preview new posts; the moderators and site operators take no responsibility for any content posted by the community.
Nothing sabotages a healthy conversation like rudeness:
- Be civil. Don’t post anything that a reasonable person would consider offensive, abusive, or hate speech.
- Keep it clean. Don’t post anything obscene or sexually explicit.
- Respect each other. Don’t harass or grief anyone, impersonate people, or expose their private information.
- Respect our forum. Don’t post spam or otherwise vandalize the forum.
These are not concrete terms with precise definitions — avoid even the appearance of any of these things. If you’re unsure, ask yourself how you would feel if your post was featured on the front page of the New York Times.
This is a public forum, and search engines index these discussions. Keep the language, links, and images safe for family and friends.
Make the effort to put things in the right place, so that we can spend more time discussing and less cleaning up. So:
- Don’t start a topic in the wrong category.
- Don’t cross-post the same thing in multiple topics.
- Don’t post no-content replies.
- Don’t divert a topic by changing it midstream.
- Don’t sign your posts — every post has your profile information attached to it.
Rather than taking an existing topic in a radically different direction, start a new topic. You can link to the previous topic if important using the link icon under any post.
You may not post anything digital that belongs to someone else without permission. You may not post descriptions of, links to, or methods for stealing someone’s intellectual property (software, video, audio, images), or for breaking any other law.
This site is operated by your friendly local staff and you , the community. If you have any further questions about how things should work here, open a new topic in the site feedback category and let’s discuss! If there’s a critical or urgent issue that can’t be handled by a meta topic or flag, contact us via the staff page.
Yes, legalese is boring, but we must protect ourselves – and by extension, you and your data – against unfriendly folks. We have a Terms of Service describing your (and our) behavior and rights related to content, privacy, and laws. To use this service, you must agree to abide by our TOS.
This community is supported by unpaid volunteer moderators who admit new members and monitor the public areas of the sites. Very often, moderators are themselves patients or family members of patients. Most of the time, moderators tend to keep a low profile, except in their roles as members of the community who may be well informed about the state of medicine and research.
There are occasional exceptions to the low profile that moderators and site owners like to keep. Moderators have administrative authority to warn, edit, delete, temporarily suspend, or permanently ban members who engage in any of the following kinds of behavior on the site:
SPAM: Unsolicited advertisements or messages off-topic to the mission of the community or otherwise intended to generate financial gain for the poster or others. Physician self-advertisement or patient solicitation will be treated as SPAM. Regrettably, we must also treat fund raising (such as GoFundMe) or solicitations by members on their own behalf in the same way.
Members should report to the moderators, any site email inviting them to correspond with another member off-site, especially concerning undefined or “urgent” topics. We are becoming large enough to be a target for spammers and scammers, and we’ve had to ban a few from soliciting for scams.
Offensive Content: Profanity, pornographic text or images, sexually or racially charged references, advocacy or facilitation of illegal activity, or defamatory posts. If you wouldn’t say it in front of your neighbor’s ten year old child, then please don’t write it here.
Personal Attacks on Members: Honest people may disagree on facts or opinions without engaging in personal attacks, punishing or angry written speech. We are here to share our journeys with others not as critics or judges, but as friends and co-participants. If you feel you must disagree with a position taken by another member, please try to remain courteous. Personal attacks will not be tolerated in either the public forums or by site email to individual members. If you receive such a message, please forward it to a moderator for corrective action. Likewise, please do not cross-post private messages to public discussions without the agreement of all participants.
Religious content or conversations of a religious nature: Because this is an international community, comprising people of many faiths and beliefs, we ask that members restrict their discussion and advice related to religion, to the Prayer and Healing Energy Requests category. Others can be invited to join you there if they wish.
Medically Dangerous or Negligent Information: Postings may be removed if they advocate for unproven or dangerous therapies, medically unsupervised withdrawal from medication, or which threaten or encourage self-harm. Any discussion about therapies that are not yet proven in the context of mainstream medicine will be placed in the Complementary Therapies category, or may be removed. Patients in crisis will be referred to local medical resources or national telephone crisis hot lines for assistance. All site content, and assessment of unproven or dangerous claims is at the sole authority of the site moderators and owners.
Practitioner Reviews: We welcome and encourage personal comment or reviews of hospitals or doctors (by name, specialty and location) with whom you have had a positive experience or outcome. To keep our community supportive and positive, and due to fairness, legal and other concerns, we cannot support negative reviews of practitioners by name in the public forums of the site.
Note: these are examples of areas where you might expect the moderators to step in, not an exhaustive list.
Revised November 5, 2021