why are discussions from here on the internet?

    • Anonymous
      October 3, 2007 at 11:03 pm

      I googled my name to find a newspaper release, small letters and spaces between first and last name, and a big bunch of my responses to the forum here are on the list that came up. I haven’t been here real often lately, but was it announced that our forum replys were going to be put out there for all to read on the internet? Nice to let people know about GBS but that isn’t how it is listed and I feel that I said personal things that I don’t want everyone to read.

      Try it yourself, the subject will say like, judy paluch off line judy paluch, then my answer to a thread will be there. I thought that all the discussions were to be on here only and people could come here and read them; like privacy.


    • Anonymous
      October 4, 2007 at 12:21 am

      Hi Judy,

      They have what they call web crawlers that post things to the internet. This site submits to search engines so it can inform the public about this. Since this is a public forum anything can be displayed I think. This is just what I think but really don’t know for sure. Hope this helps.

    • Anonymous
      October 4, 2007 at 1:03 am

      Judy, I am like you and don’t like things like this at all !!! We have no privacy in this country anymore with all kinds of things and people spying on us. It is just like being in the hospital and I was trying to use the urnal and two Drs. and a nurse pulled the curtains back with no notice they were about too. I struggled to cover up real fast, but Dr seen me and said “there is no privacy in here’ and kept right on talking.
      Judy, I suppose you and me, and any others like us, will just have to start e-mailing each other and stay off the web. ๐Ÿ™ It truly is upsetting to me to say the least !

      God bless,

    • Anonymous
      October 4, 2007 at 8:42 am

      Being a public forum, anyone can read things here. Only way they would not is if it was a private, locked group. Even then, there are no guarantees.

      The rule is, if you don’t want anyone to read it, don’t place it on the internet.

      I am sorry that you feel violated. I would too, had I not known.

      I run a private support group, locked, and have for 6 years now. (Not for GBS or CIDP) But that still doesn’t stop someone from copying and pasting something said in a private forum to a public one. That happened once that I am aware of. Someone was using my responses to answer a question in another forum, posting them without my permission.

      I knew then, that private, locked still doesn’t protect. I have been careful in all my postings and email since then.

      Sorry you found this out this way.


    • Anonymous
      October 4, 2007 at 9:16 am

      Although it is too late to change past postings, I would recommend when people create their user name that it NOT be their real name. For all sorts of reasons, privacy being the biggest.

      Web crawlers do catalog everything that is posted on the open internet, so that when you search, you can find what you are looking for. My own name, when googled, pops up on a university web site. I was surprised, it was not a university I ever attended or even visited. Then I discovered my name was buried in a long list in their annual report because I contributed to their public radio station. It was in a pdf document, not even on a list on their actual web site.

      This is not an issue for me: I don’t mind people knowing that. However, health information is so personal. That is why I don’t use my own name here on the forum.

      I don’t think the forum administrators have any control over this. From what I understand it is just the way the internet works. I tell my kids, be careful what you say/post out there. It never goes away.

    • Anonymous
      October 4, 2007 at 1:26 pm

      Even if you don’t use your correct name on the forum, they can still find out who posted it by finding e-mail address attached to the posts on this forum. No privacy is right. ๐Ÿ™


    • Anonymous
      October 4, 2007 at 2:26 pm

      FYI:From the FAQ under “Can I send email to members”
      [QUOTE] Yes! To send an email to another member, you can either locate the member you want to contact on the member list, or click the button on any post made by that member.

      This will usually open a page that contains a form where you can enter your message. When you have finished typing your message, press the [send email] button and your message will be sent instantly. Note that for privacy reasons, the email address of the recipient is not revealed to you during this process.

      Note that if you can not find an email button or link for a member, it either means that the administrator has disabled email functions for this forum, or that the member in question has specified that they do not wish to receive email from other members of the forum.[/QUOTE]

      This seems a reasonable protection of privacy to me…but you can always change preferences if you wish to not receive emails.

    • Anonymous
      October 4, 2007 at 2:47 pm

      Hello all:

      I have read your thread about personal information being placed on the Internet. While I find this an awful breach of confidentiality, I believe there is nothing we can do to eliminate this threat. You could change to a ficticious name, as was advised. I find it hard to believe that people will have so much time on their hands that they will reserach your information to get your correct name but I have long ago ceased being surprised at what people will do. It is not quite as effective but you can contact an individual privately by clicking on a person’s name. If you wish to take information off your posting, you can edit your submission.

      I am sorry about this but I want you to know that the Foundation tries as hard as it can to prevent this type of thing. Sometimes, there is just nothing anyone can do to stop it.

      Barbara Katzman
      Executive Director
      GBS/CIDP Foundation International

    • Anonymous
      October 4, 2007 at 4:47 pm

      I do use my real first name on this sight, but have never used my last name. Not that it is that big of a deal, as my entire name, phone number, & address are all in the phone book; easily accessible via QuestDex.com I would be more concerned about my credit card number being out there!

    • October 4, 2007 at 8:56 pm

      I don’t even care about privacy any more, it means nothing! After the doc gave my name, Kevins name and our phone number add. and med info to the gov., I doubt we have any privacy left. Who cares! I think next time we go to the doc, I am going to mess with them and refuse to sign the privacy agreement just to see what they say.

      Regarding the info from here being public, when we were first dx, I googled particular symptoms and I was led to several medical studies with other postings by people like us on this forum. I learned much, and would not be objectionable to have my posts for all to see if it would help one person. My husband obsesses about identity theft, through the computer. I am tired of worrying about it. Since gbs, I am becommi9ng very complacent! Good? Bad?

      You know who
      (just kidding!)

    • October 4, 2007 at 8:58 pm

      Wow, lots of spelling errors on the previous post, guess I am tired!

    • Anonymous
      October 4, 2007 at 11:37 pm

      I thought I was “safe” since I didn’t use my full name. I turns out that if I typed in my screen name and “CIDP” I found listing for this form. That means the anyone can look at what I posted on “Forum Info”. I going to update that right now delete some of the info that could help someone seal my identity. It might be a good idea for everyone to check what they have posted.

    • Anonymous
      October 5, 2007 at 2:49 pm

      You can have the administrator over this forum to let you change your user name, to a made up name, and you will be pretty safe. You will have to have the Administrator’s help to do this. If you just try to reregister with a made up name it will not fly, because it will come up that there is a user name already useing this, yours, e-mail address. That is the reason you will need the help from the top. lol ๐Ÿ™‚ That is no problem for them to fix this for you and would do it gladly if you would just ask them. That is what I have done at different times, because I was on this forum years ago and have seen it turn over two or three times. Oh yeah, I am older than dirt itself. lol ๐Ÿ™‚ The reason I am telling you this Judy is because I don’t want to see you stop posting here. We all need each other here and each and every person counts.

      God bless,

    • Anonymous
      October 5, 2007 at 4:41 pm

      Sorry that happen to you. I went and ran a search on my name and none of my post came up. I think it is hackers that just grab some post and put them out there. I was told by a professional, everyday go to your tools and delete all your browsing history and then do disk cleanup. I do it faithfully and I don’t get as many junk e-mails anymore.

    • Anonymous
      October 5, 2007 at 7:48 pm

      I just put my user name I use everywhere on the internet through Yahoo search and every forum I ever joined under suewatters1 had a post come up. 34 result showed up about 4 were bogus didn’t lead to anything but the others did.

      Never thought of that. So I am glad I am using a different name then my own.


    • Anonymous
      October 24, 2007 at 5:30 pm

      I’m really sorry to hear that people are getting upsetwith this but, of course, they should be. Take a look at the responses to this post as many of them are very good suggestions.

      Also, look up the short story called “Scroogled”, recently published on the internet (where else???).

      Do use a screen name that allows you some semblance of privacy and, one other suggestion, get a “throwaway” email account. I have one with servers in a foreign country. You can find them just by looking for “free email”. They are not as common as before but they do exist. When you find a site, look it over carefully to see if you can find the name and address of the company operating it, then use that address in your registration and a “phony” name.

      Yes, it is unfortunate to live in such a world but, even though I don’t think I have anything to hide, I’m not ashamed to take a few simple measures to throw any snoopers off the track.

    • Anonymous
      October 24, 2007 at 8:11 pm

      I searched my real name and found there is another me living just 45 mins away from me in the same state. No wonder everybody thinks they know me when I tell them my name;)
      I agree with the others, use a screen name, and a different email addy for forums etc.

    • Anonymous
      October 27, 2007 at 1:28 am

      Hi Everyone,

      Thank you all so much for all your suggestions and helping me find ways to eliminate the problem of no privacy. I appreciate all the ideas and ways to lessen this problem. All the information has helped me decide which way to go. Thanks, Drummer, for letting me know that I have to call the administrator to change my name. Many people probably don’t know this.

      I am going to do a few things, but I will be here. The white tiger will be my dead give away though.

      Thanks again and thank heaven for the forums,