General rules of conduct for the OCF forum. FAILURE TO ABIDE BY THESE WILL CAUSE YOU TO BE BANNED FROM THE BOARDS. While this is a public forum, use of this message board is a privilege, not a right. OCF, for any reason and without explanation, may ban a particular user or remove any posting at its discretion. We want The OCF Survivor/Patient Forum to be a place where people are free to express their concerns, and share information and support. But we also want the lists to be SPAM-FREE, to stay within the bounds of the law, and to be civil. We also want to protect your privacy to the degree we can. So we do need a few rules. If you have any doubt about whether a posting would break the rules, please write to us at OCF before you post! - Commercial Postings are STRICTLY PROHIBITED.
- The lists are for Patients, Their Supporters, and Allied Professionals
- Respect Copyright Don't Post Chain Letters, Virus Warnings, or Other Off Topic Material
- Be Civil Respect Religious and Political Diversity
- Do not advocate for unproven cancer cures or treatments. More on this below.
- You may NOT put a link in your signature block.
- Two Important Rules. We put these two up front so you cannot miss them - please read!
RULE #1:
Commercial postings are STRICTLY PROHIBITED If you have something to sell, you are very definitely in the wrong place. Anyone posting advertisements to this list will be deleted immediately and without warning. In addition, we may request that your ISP terminate your account for willful abuse, and if we think you are making unsupported claims of a cancer cure we may register a complaint with both the Federal Trade Commission, and the Food and Drug Administration. We are very serious about this. RULE #2:
The OCF Forum is for patients, their supporters, and allied professionals The forum is primarily for cancer patients, their supporters and loved ones, and health professionals who wish to lend their support and knowledge. If you are posting to the forum for any other purpose, please contact the foundation PRIOR TO POSTING ANY MESSAGE. This includes people who want to post a survey or questionnaire of any sort, who want to post an announcement for a charity, or who wish to archive or redistribute the contents of any posting on the message board. We also request that anyone observing our list for research purposes contact us. Attorneys researching cases, or looking for clients are not permitted on the OCF forum. Anyone else who is not a cancer patient, supporter, or health professional should contact us at [email protected] . Requests will be considered on a case-by-case basis. Things which are always OK to post include: Anything you write yourself, including a summary of another's copyrighted work.
The URL of a page on the Internet array(post the URL, not the content of the page!), after checking with OCF. AGAIN - Please check with OCF prior to this. YOU MAY NOT POST URL's to alternative cures, religious sites, or other cancer sites which we have not reviewed for accuracy and appropriateness to this forum. For all of its good, the web has a great deal of misinformation, outdated information, and outright wrong or deceptive information on it. We wish to protect our readers by reviewing other site's that you may wish to refer people to. This requirement does not apply to US government sites like the NCI, or the American Cancer Society sites.
A reference to any paper in the medical literature.
Quoting a message someone else posted to the list.
Anything which you have permission of the copyright holder to post.
Medline abstracts
Please note that there are tons of bogus cancer cure claims, herbal remedies without documented proof of efficacy, and treatment centers in foreign countries trying to sell hope, that have no proven clinical benefit. If you are a proponent of these ideas and places -DO NOT BRING THEM UP ON THIS MESSAGE BOARD. OCF is dedicated to the discussion of proven treatment modalities, and adjunctive array(not alternative) therapies to treat side effects. FAILURE TO ABIDE BY THIS RULE WILL GET YOUR URL BANNED FROM THE BOARD. This is not an unrestricted open forum or democracy. We regulate what is posted here, and unsubstantiated treatments with no peer-reviewed published support in science are not welcome. Please choose a different message board if you are interested in discussing these kinds of things. A good rule of thumb is that if it has been put on the quack watch site array(www.quackwatch.com) it should not be discussed here. Members posts become the property of The Oral Cancer Foundation. If the member decides the post needs to be edited, it can be edited up to 3 hours after is are published. If its been longer than 3 hours and you want to make a change please contact our head forum admin, ChristineB. Only moderators can edit any post at any time. The OCF message board is monitored a minimum of 3 times every single day of the year. Most days it is checked every few hours or 7 plus times a day. By constant monitoring our members are ensured to be protected from advertisers attempting to make false claims and sales attempts. All our moderators are oral cancer survivors who speak from both their own personal experiences but also from working for years on our forum. They volunteer their time to monitor the OCF public message boards. No one from the OCF moderators to the organization itself is affiliated with any institution, device manufacturer, pharma company or other entity that would constitute a conflict of interest. The opinions expressed are the moderators own and not representative of the position of any outside entity, unless clearly stated in any particular post. This is for instance; if the published and FDA approved indicators for use of a drug, and the pharma companies instructions for its use are mentioned, we clearly state this is the FDA approved language that the company must adhere to when prescribing a drug. No OCF Admin would ever suggest off label use for any product, device or drug. There are no conflicts of interest between moderators, OCF itself and comments they post on the forum. No OCF moderator receives compensation of any type from any outside entities to express a certain point of view or is a consultant to any such firm. Things which MAY be OK to post array(and to which OCF usually won't object) include: Short quotations from copyrighted material to illustrate a point.
Press releases or other material clearly intended to be distributed - but remember advertising is not allowed! Only post PR material if you have absolutely no interest or involvement, and are completely sure it's relevant! For the most part news releases from companies about the results of a drugs efficacy in clinical trials etc. should be posted to the OCF oral cancer in the news section. Please forward these types of things to OCF at [email protected] for our review and inclusion in the news section.
Things which are NOT OK to post without permission include:
News articles and other copyrighted material from web sites, newspapers, and the like, except for small CREDITED EXCERPTS.
Private correspondence RULE #3
If you are unsure of your facts say so. If it is an opinion say so. If it is your personal experience say so. There are few absolutes in the world of cancer. Do not post anything that might be considered such. Try to qualify your statements and opinions. Do not speak in absolutes unless you are completely certain that the information is correct. Following wrong advice or misinformation can hurt people. You have a responsibility to those who read your posts, and you must be careful to do no harm, even in your attempt to assist others. Speak from your own personal experience, and identify it as such. This way others realize that what worked for you may or may not work for them. If you are a doctor please do not identify yourself as such on the boards. We do not wish to have any reader construe your comments to constitute medical advice. Clearly without personal examination and the revelation of all the facts, none of us can, without reasonable doubt, tell another what is best for them over the Internet, regardless of our knowledge, or expertise in any given subject matter. RULE #4:
Don't Post Chain Letters, Virus Warnings, or Other Off Topic Material By a chain letter we refer to any message which asks you to forward it on to others. Internet messages like this acquire a life of their own even though it turns out they are usually hoaxes or scams. Typical examples include warnings about computer viruses, or claims that you can help a charity by going to a certain web site. Even in the rare case where one of these letters is actually accurate, they are off topic. So before you forward a chain letter message on to the list, stop and think:
Is this on topic?
Have I checked to be sure it's accurate?
Some places where you can check on the status of various hoaxes and virus warnings are:
Break The Chain is an anti-chain letter site with good advice on recognizing e-mail chain letters, and a searchable database of known chain letters. The site's author will also check-out possible chain letters for you if after researching you don't find anything definitive.
Computer Virus Hoax Page from Symantec Corporation. Symantec is one of the major anti-virus companies, and if there is a real virus, you will certainly find information on it in their Virus Encyclopedia
VMyths Virus Myths Page - a bit commercial but lots of info
Hoax Busters is a comprehensive site which covers myths, chain letters, fake virus warnings, and much more.
Urbanlegends.com - covers various other stories you might find floating around on the net.
Finally you can always go to a high quality search engine such as Google, and type in a key phrase from the chain letter you got. You'll almost always get telling results. RULE #5:
Be Civil
Fortunately we have had very little in the way of personal antagonism on our forum. At the same time, disagreements and occasional friction are inevitable. It's perfectly OK to disagree with someone, but it's important to keep the tone civil. No verbal wars! If you writing an angry post, stop and ask yourself if you could make your point in a calm way before you press "send". If you think that someone has criticized you, keep in mind that our words don't always come out exactly the way we meant them to, and occasional misunderstandings are possible even when no criticism is intended. This is especially true on the Internet where you can't see the person's face, look in their eyes, and hear their tone of voice. We reserve the right to delete posts at any time that OCF unilaterally finds offensive or inappropriate. RULE #6:
Respect Religious and Political Diversity Religion is a delicate topic. Faith is very important to many, especially during a life crisis like cancer. No matter how strong your personal faith, it's important to realize we have a great diversity of religious beliefs among our posters, and that not everyone shares your faith, whatever that might be. Many people will be offended by posts which preach to them, or which assume that they believe in the same God you do. Don't post messages which advise people to pray, or tell them that they will be helped by a particular religion or even by religion in general. Anything which might be considered proselytizing should be avoided or it will be deleted. At the same time asking people to pray for you, or expressing how your faith has helped you should be fine. Sometimes it's a very fine line - use your best judgment. If disagreement occurs on the board regarding this topic, we ask that those involved in the disagreement take their discussions off the board and if they desire conduct their discussions by email or private messaging. The most important rule of thumb - if the first and original poster did not mention prayer, religion, God etc. you should not in any responses to that persons post. OCF may edit religious references out of any post or delete it altogether. Remember the rule of the first poster's religious tone. Politics is generally off topic and not an appropriate subject for the forum unless related to oral cancer activism. Occasionally a legislative bill touches directly on cancer, and in this case, careful discussion in your own words would be appropriate. Again, please use your best judgment. Forwarding calls to action relating to political causes that you've passionate about falls under Rule #4 above on chain letters. Please don't. This doesn't cover every possible issue with posting on a public board, but it is a good starting point as you begin to participate in OCF's online support forum. If you have a problem with a particular posting and wish to bring it to the attention of the board administrator, you may copy the postings URL and email it to any of the admin moderators whose names appear on the board.
By agreeing to the above terms you allow The Oral Cancer Foundation to send you periodic emails with news and related announcements. You must have a valid email to be a board member. We will never sell your information to third party companies. Get help! Come back and give help. |