If the ICN has helped you Please Read Our
Disclaimer
Created: June 1997
and/or given you
comfort
during those difficult nights,
we hope that you will become
a subscriber.
Jill Osborne
Revision: May 2003
Diane Lopresti
Revised: May 8,
2000
ICNLesa
Internet Safety Guidelines
After seven years on-line, we've had the chance to see both the good and the bad side of the world wide web and internet. Though it is filled with people with the best of intentions, medical information on the web continues to be controversial.We hope that the following "frequently asked questions" (FAQ) offer insight into some of the basic safety issues that we have seen on the web. If you have children, please review the A Parent's Guide to Internet Safety Welcome to the ICN! We hope that your journey on-line is a happy and hopeful one. - ICN Management
- Can an IC patient on-line give you medical advice?
- Who should I believe? Should I do what people suggest for my IC?
- Is there one definitive source of information online for IC on-line?
- Should I believe everything I receive online about IC, either from patients or websites?
- Should I give my e-mail out to other ICers?
- I wrote something on a newsgroup or message board and someone sent me a nasty note (flame) in response. What should I do about it?
- As an on-line support group leader, what do you think a new patient should beware of?
- Should I get involved in an on-line debate or flame war about any topic?
Can an IC patient on-line give you medical advice?
The theme of the IC Network website is to encourage IC patients to become active participants in their medical care. As such, an informed, active IC patient understands implicitly that no patient on-line is a medical authority nor can they give you medical advice. Even a doctors post should not be taken as medical advice, for it is no substitute for face to face medical care.
Who should I believe? Should I do what people suggest for my IC??
A new IC patient is at the beginning of a new road. As you progress down it, and as you learn more about IC, you will find forks in the road with a patient, or doctor or researcher beckoning to you saying "Come my way" or "My way is the right way."You must remember that you cannot follow anyone elses journey. IC patients are so uniquely individual, with very different needs and circumstances, that you must do the extra work to forge your own path based upon the information you gather. BEWARE OF ANYONE WHO SAYS I'M THE EXPERT ON IC.
Is there one definitive source of information online for IC on-line?
No. Although we strive to the ICN represent the latest information on IC, it is NOT the only resource available for your research purposes. We also encourage you to visit the ICA's website, as well as many more listed in our WebSites Worth Watching page. Websites which conform with the Health on the Net Foundation Code of Conduct for Medical Websites are often good places to start.
Should I believe everything I receive online about IC, either from patients or websites?
The answer is No. We want you to be skeptical consumer. Your job as an active patient is to learn as much as you can about IC, including the pros and cons of any specific issue. As such, you're going to get a lot of information that you won't use, and some that you may use for the rest of your life. Always discuss any new treatments or strategies with a trusted medical care provider.
Should I give my e-mail, phone or address out to other ICers?
Basically, we don't think that you should give out any information until you've had the chance to leave messages with them in a neutral message board or newsgroup. If you have come to respect their opinion or perspective, you may then wish to first exchange e-mail. If you feel comfortable with that exchange of information, you may wish to exchange phone numbers. Under no circumstance should you give out any personal information, phone or address to someone you have just met. Always trust your instinct and use common sense.
I wrote something on a newsgroup or message board and someone sent me a nasty note (flame) in response. What should I do about it?
Sadly, there are some members of the public and ICers on-line who can be bullies. They fail to understand the most common etiquette rule of the internet - Debate the message, not the moral character of it's author.If you receive ANY e-mails from someone that attacks you personally, that's a clear indicator that that person isn't functioning properly on the internet. We suggest that you not waste your time trying to sway them to your perspective. You're best option is to ignore them completely. And, if a message is posted on the ICN boards that you feel is hurtful or inflammatory, Contact Us immediately, and we will delete it for you.
As an on-line support group leader, what do you think a new patient should beware of?
Ninety five% of the on-line IC community are wonderful, sweet caring patients who truly wish to offer support to others. Unfortunately, there are some who seem to offer more distress and depression, than support and encouragement. Don't feel like you HAVE to be anyones friend. If someone is making you uncomfortable, or not sending positive support to you, then let them go. Not everyone will stay in your life for a long period of time. And some will not belong at all.
Should I get involved in an on-line debate or flame war about any topic?
There have been several long standing debates of notice in the IC community, most relating to the use of antibiotics in treating this disease. In fact, the same debate has occurred for the past four years in the IC newsgroup with various levels of antipathy. We suggest that you not get involved in any on-line debates which appear to be hostile. If there is an issue worthy of your time, always remember our cardinal rule: Debate the message not the moral character of it's author.