A few Forum ideas

    • Anonymous
      October 7, 2007 at 6:13 pm

      I would like to suggest a few Forum related ideas for discussion. My hope is this thread might yield some useful suggestions that I will include in a letter to the GBFI staff, which might help someone down the road. Do any of you regular visitors know the correct contact for such correspondence?

      Please offer feedback on the items below in that they are just a few ideas that crossed my silly mind the other day. I would like to know if you like the idea or do not think such a recommendation is a good idea. Also, please add suggestions if you have one, and I will include it in my letter. I understand most of you think things are fine as they are, which is fine by me in that I see the Forums are a wonderful resource. I like to brainstorm every now and then

      Idea 1
      *Create a master “sticky at the top of the category’ thread for each of the major Forum categories, which means it remains at the top of the list of threads ( http://usalug.org/phpBB2/viewforum.php?f=10 ). The thread itself would be facilitated by an admin, ether staff or volunteer, because it is what you call a working thread and requires updates regularly. The geeks of the world are familiar with this concept in that the computer techs have used forums or bulletin boards (BBS) to troubleshoot and brainstorm technical matters for over twenty years now, and administrators of large Intranets need a place to share server info updates quickly, such as a change in computer IP or Port. Such a definitive thread helps the subscriber receive updated information at a glance, and links to resources they are searching for, as opposed to digging through the various threads to find the information.

      The application of this type of thread here would be to offer updated GBS/CIDP links related to pertinent topics. Visitors who have new information post in the thread and offer updated information i.e. broken links, new information,etc. The admin reviews the links and adds the information to the appropriate topic area, if they deem it worthy. Eventually posts below the top post are deleted, after review of the information.

      The sticky thread intro might read: “The information below are Internet links presented by forum visitors who think the related information might be useful. Please post a note concerning new links and updates for administrative review. ” The thread itself might start by using broad categories. For example, let’s work on a master sticky for the GBS-Adult category- I will add a few links just to show you how the topics might appear as linked text; not a full list, so please make suggestions.

      I would like to suggest a few Forum related ideas for discussion. Sorry but I could not get my text to link to to site and make it look pretty- HTML is off ?

      Topic of interest Address Source

      Care givers
      Chronic Fatigue
      …General information
      ……Centers for Disease Control and Prevention (http://www.cdc.gov/cfs )
      ……Wikipedia (http://en.wikipedia.org/wiki/Fatigue_%28medical%29)
      …GBS related information
      ……GBSFI Newsletter Fall 2000 ( http://www.gbs-cidp.org/newsletters/2000fall.htm)
      Definitions of GBS
      …General information
      ……MayoClinic (http://www.mayoclinic.com/health/guillain-barre-syndrome/DS00413 )
      ……GBSFI FAQ (http://www.gbs-cidp.org/aboutgbs.htm)
      Financial aid
      Government resources
      Long term rehabilitation
      Mental Health
      Other GBS Forums
      Pain Management
      Physical therapy
      Risk factors
      Screening and diagnosis
      Support Groups
      Treatment options

      Idea 2
      * A new category titled “POST GBS’ or some other title defined as an area of discussion related to long term issues living with residuals, etc.

      Idea 3
      *Add a different Forum category called “The local bulletin boards” and list the 50 United States for starters, perhaps later include International countries. The brief instruction related to this realm might read ” Select your State and interact with others from your area. Feel free to use this Forum to share contact information and schedule casual gatherings or Internet meetings. To find out additional information concerning formal chapter meetings, visit http://www.gbs-cidp.org/news-events.htm”

      Once a State is selected additional sub-categories or threads would appear as a hyper-linked list the various cities or territories- ether created by the users or an administrator- where upon participants might interact by leaving thread notes. That is, it might yield interaction with Forum visitors who reside in their own area. A sticky thread at the top of each state might offer regional Chapter contact information, as well.

      Idea 4
      *Create a “testimonial” type category, where recovering Internet users might create an introduction thread, sharing their individual story with others who can relate. I note that lots post introductions all over the place, so why not offer the visitor the podium at a place the reader might easily find them.

      That’s all folks!

    • Anonymous
      October 8, 2007 at 12:33 am


      send to: Barbara Katzman Executive Director GBS/CIDP Foundation International. no links allowed here. but you can post urls to copy & paste. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      October 11, 2007 at 2:02 am

      I know that sounds like a good idea, I’ve tried the same thing myself. I was gonna say it’s not a good idea. I take that back. To have an ongoing thread with helpful information is an EXCELLENT idea.

    • Anonymous
      October 11, 2007 at 11:30 am

      Note to self: Annie likes idea # 1. Thanks for the feedback!

      /thanks gene! If only we could cut and paste your GBS knowledge here 🙂

    • Anonymous
      October 11, 2007 at 12:22 pm


      Thanks for your innovative ideas. I know you posted some useful ideas on the old forum and you took a lot of flack for it. All of that flack was undeserved. I appreciate the fact that you were brave enough to offfer your reasonable suggestions a second time.


    • Anonymous
      October 11, 2007 at 1:27 pm

      I like idea #3 too. Furthur resources on getting support in your area would be helpful. I noticed when I was writing this that many of the members locations are listed on the top right corner of the their post. Like you’re from Dayton, Ohio. I haven’t done a profile. Not that I’m being secretive, I just haven’t gotten around to it. Too me it’s too complicated. I live in St Petersburg, FL. Hopefully the forum will become more sophisticated as GBS and CIDP awareness raises and more funding becomes available. The “mystery diagnosis” show is a step in the right direction.

    • Anonymous
      October 17, 2007 at 4:47 pm

      Thanks for the feedback, gang.

      Lee, I appreciate your support. Yes, I thought I should give it another shot thinking that, as indicated by improved web site, some new players may be interested in progressive BBS ideas, perhaps not. As for flack, well, I ignore silly folk like water off a duck’s back.

      Actually, I expected a higher volume of feedback. Come on , give me more input!

      /BBS changes cost close to nothing

    • Anonymous
      October 17, 2007 at 11:45 pm

      Great Idea I got another forum that uses BBS and I love it. It doesn’t have a frozen main page like we do.



    • Anonymous
      October 18, 2007 at 2:32 am

      Good find, Sue. I noted their main category has a working sticky thread with links, although it is not as interactive as I suggest. I also noted the disclaimer statement at the top of the BBS. They use html for links, which is comon practice (I assume our BBS was attacked or spammed at some point and the admin did away with the hyperlinks for some reason:confused: ). Anyway, Sue, I trust you like a few of the ideas posted above?

    • Anonymous
      October 18, 2007 at 9:18 am

      Rocker I love the ideas but it cost money and I don’t think the foundation has the money to revamp the forum.


    • Anonymous
      October 22, 2007 at 6:45 pm

      [QUOTE]Rocker I love the ideas but it cost money and I don’t think the foundation has the money to revamp the forum.


      Nope- a real cheap thing to do! There is nothing to buy and little work on 3 of the 4 suggestions; the 50 States might take a few hrs to set up. Heck, I’m no geek and I have set up quite a few Forums over the years- even I could do the work. It is just the desire and motivation to make changes.