Posting on the BB ...

Posted by Moderator-JB , Feb 20,2002,16:17   Archive

I'd like to draw your attention to an excerpt of our policy which is always listed at the top of our bulletin board.

'....In order to post on this bulletin board, you must register ..... Although your e-mail address will be on file and accessible to the moderators, it will not be known to regular bulletin board users unless you include it in the appropriate field in your postings.' This protects your e-mail address.

This is the wonderful World Wide Web. A fantastic library of iformation at our fingertips, accessible without moving from the chair in our home.

If we want to find out information on most any subject we need only do a search on it.

If you wish to have a completely private conversation with someone - e-mail them or pick up your telephone.


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Re: Posting on the BB ...

Re : Posting on the BB ... --- Moderator-JB
Posted by Webmaster , Feb 20,2002,21:06 Top of Thread Archive
Thank you, Judy. You and Shirley have pretty well said it all so I will just reiterate.

For the most part, information on the World Wide Web is publicly accessible. That means that anyone who finds it can look at it. Search engines aid in finding information by indexing it. They do this by sending their robots (also known as spiders and crawlers) out onto the web to find web pages and add them to their indexes. Posts to web-based bulletin boards are web pages and, as such, may be indexed by robots (depending on the particular search engine's criteria about what it indexes).

If you have information that you want to restrict to only certain individuals, you should send it to those persons by e-mail. In fact, if you want to be sure no one else sees the information, you should use encrypted e-mail.

On the bulletin boards I administer (Blepharospasm, Dystonia, Spasmodic Dysphonia and Musicians with Dystonia), if a poster leaves the E-mail field blank, his (I am sorry but I am not going to use a dozen his/her, he/she, him/her) Username will show inside the meassage but it will not be a link which can be used to create an e-mail to him. If someone who is not a registered member and who is not logged in, clicks on the name of a message author on the main index page, he will just get a screen asking him to log in. If he has logged in, he will see the information which the author has included in the Home Page, Location and Description fields. For example, Shirley has location as "Arkansas (AR) USA" and description as " 49- RN-Dx. BEB/Apraxia/Meige-June 99--married-two sons-18&20-upper myectomy-4-01"). This is information about herself which she is willing to let any registered member see. If the author chose not to include any information in the Home Page, Location and Description fields when registering or subsequently removed it using the "Modify your registration" (first screen after logging in), then the viewer will not see anything other than empty boxes. One thing which is not displayed in this Member Information window is the member's e-mail address (although the moderators can access it).

There are pros and cons to including your e-mail address in your postings. If you don't include it, the e-mail spiders which harvest addresses for SPAM won't get it. On the other hand, if someone would like to follow up something with you on a more personal level, he can't do so. Many friendships have developed as a result of followup e-mails. It is a bit like a man considering asking a woman out. If he doesn't ask her, he definitely won't have to deal with being rejected but he also definitely won't have the pleasure of her company. If you do include your e-mail address, one thing which you can do to reduce the probability of your address being harvested by a spider is to replace the @ with @

It is possible to create a bulletin board for which only persons who have been supplied with a password by the webmaster can even see the index page. If we had that, we would probably get very few new members because most people don't like to join a forum that they have not seen. I would not. In addition, there are still a lot of people out there who have not yet been diagnosed or, if they have, do not know about BEBRF and the support offered on this bulletin board. The other day, Anne Brett sent a note to the On-Line group telling about a man who just found out he had dystonia after being misdiagnosed for 32 years. There is still ignorance out there in the medical community so the more exposure we get, the better. I imagine that we have members who came to us after running across one of our posts in the course of an Internet search.

Bob who gets a lot of SPAM but does not find using the delete button an onerous task

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Re: Posting on the BB ...

Re : Re: Posting on the BB ... --- Webmaster
Posted by June in Toronto (June Floyd,June in Toronto), Feb 21,2002,05:23 Top of Thread Archive
Thanks to Judy, Bob and Shirly for their explanations on all this.

June in Toronto

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Re: Posting on the BB ...

Re : Posting on the BB ... --- Moderator-JB
Posted by Lyn Patterson , Feb 21,2002,04:30 Top of Thread Archive
I think that most of us sort of knew that anything we put on the BB was open to anyone but I imagine it was a shock to see it out of context and with one's name on it.

I mentioned this problem on a technical forum I use a lot, without specifying THIS board - you may be interested in one of the replies I received:

" This type of monitoring has long term effects on those who put the information out on to the board..Health insurance, life insurance, potential employers and the list goes on..Information brokering especially in health care right now is a big profitable business and can alter the course on what choices in life , you will be offered..

The best way to deal with it..most health sites are sponsored by insurance companies or a sibling of a parent company...e.g. Medscape is part of CBS news and Web MD is fighting to have all patient information transferred via website data base..

1) use a free based web address
2) Don't give out any information you don't want to come back to haunt you or you wouldn't tell anyone else..besides your doctors.
3)Understand even if you consult a medical personnel online , they are not bound by patient confidentiality.
4)Not all medicall sites are monitored/or run by medical practioners
5)There is a way to track down the medical info that is out there about what they know about you but it costs money..
6)This medical info will fall you around longer than a bankruptecy(which is limited to 7 years)..As insurances HMO's and genetic laboratories become one entity..drug companies and hospitals are merged..The right for privacy will shrink immensely..
7)2000 , a bill was passed by the gov't that in order to stop drug companies and insurances from selling your info , the gov't allowed them to send you "information " from the drug companies based on your usages and conditions treated by prescriptions..

I am sorry you have been exposed to this but maybe by your posting this it will protect others.."

I hadn't thought about the interest in our board perhaps by drug companies, insurance companies etc - the list goes on.

We just have to be sensible about it and don't say anything you would not want the whole world to know.


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