Have you watched any GBSFI webcasts?

    • Anonymous
      February 28, 2011 at 6:29 pm

      I guess I really am just an old fashioned, non-technical (even curmudgeon) dinosaur internet user.

      When I went to the gbsfi website and signed up, signed in and then selected a webcast I received an error message stating something like this- “Sorry, you are required to give us your twitter account to view these webcasts!”

      Is that necessary? Did I make an error?

      Is that why you have not watched the webcasts? I don’t have a ‘smart’ phone, I have neither joined Facebook nor Twitter. Do I really have to ‘get with it?’

      I’d love to hear your take on it.

    • Anonymous
      March 1, 2011 at 11:34 am

      didn’t know there were webcasts!?

      I must also be in the dark ages LOL!


    • Anonymous
      March 1, 2011 at 11:45 am

      As Rhonda stated, I had no idea there were webcasts.

      I suspect I’d be in the same boat; I’m not a Facebook user and still haven’t determined a reason for Twitter. Don’t feel like a curmudgeon; I even had texting removed from my cell phone. 🙂

      Take care,


    • Anonymous
      March 1, 2011 at 12:44 pm

      I had heard ‘talk’ on this forum about the big meeting and that webcasts are/were going to be available.

      From the main website:

      [I]GBS/CIDP Foundation’s 11th International Symposium

      The GBS/CIDP Foundation’s 11th International Symposium held in King of Prussia, PA November 5-7, 2010 was a huge success. Thanks to Sonic Foundry Inc., many of the sessions presented were taped and are available for your review. To access these sessions, [U][B]click here[/B][/U].[/I] Italics, bold and underline are my own. click here will not work.

      Well, ‘click here’ takes you to: “[I]User Login

      Welcome to the on-demand webcasts from the 11th Symposium of the GBS/CIDP Foundation International. If this is your first visit to the website, please click below to register.[/I]”

      at: [url]http://register.mediasite.com/?nd=login&logout=1&setsite=20[/url]

      So go figure, they want your e-mail address and a password. Seem fair? Keeps lookey loos out I guess. Maybe it keeps out web crawlers too, but I doubt it.

      Well, today I signed in again. Perhaps there was an error in my ways. I have an Active X script blocker on my non-admin Internet account. Apparently that stopped the webcast script. Maybe Twittter is only required if you want to post a comment.

      So, I released the script blocker and, Guess What? Now it tells me “Install Microsoft Silverlight.” Good grief. what happened to click and play and please leave my computer alone?

      Worse yet, the comments I can see are either in a foreign script or are about gun control.

      Anybody? Anybody successfully viewed a gbsfi webcast?

    • Anonymous
      March 1, 2011 at 12:50 pm

      Here’s the answer(s), at least a beginning-

      “[I]Technical Requirements

      To ensure that your computer is set up for a smooth AU Virtual experience, this page tests if your computer meets the minimum requirements to run the AU Virtual Player.

      The test checks the following components:

      * Browser — Note : Your browser window needs to have a minimum resolution of 1024×768. 1280×768 or larger is recommended for optimal viewing.
      * Flash version
      * Silverlight version
      * JavaScript
      * Screen resolution
      * Twitter account activation

      You are using a supported version of Firefox.
      You are using Flash 9 or greater.
      Please install the latest version of Silverlight.
      Please use a larger resolution to view the AU Virtual Player. (Minimum: 1024×768, Recommended: 1280×1024)
      Your bandwidth is less than the recommended bandwidth of 750 kbps or greater. Performance of the player not be at the desired level.
      OPTIONAL: You have not authorized us to post to Twitter.
      Test your audio and video connection. You should see the video stream and hear the audio. Note that proxy servers may prevent you from accessing content, learn more. If you have trouble viewing the presentation try disabling accelerators such as Google Web Accelerator.[/I]”

      So, I’m supposed to change my screen resolution, change Internet service providers because my bandwidth is too low, and authorize somebody to post to my twitter account.

      Are you kidding me?

    • Anonymous
      March 1, 2011 at 2:34 pm

      I didn’t have any problems signing in.

      I went to the link you provided, click on “Register” and got this link:


      I filled in the prompts & was immediately directed to the links for the webcasts…which will not play – I just get a black screen.

      I have a brand new computer with Windows 7 with lots of extra stuff…that I know nothing about. My husband says there is no reason for the webcasts to not play for me so there must be something wrong with the site.

      Maybe just keep trying?


    • Anonymous
      March 6, 2011 at 12:42 pm

      Which is it- nobody on this forum gonna say they watched any webcasts, or nobody has watched them? A rhetorical question I guess.

      Thanks to Rhonda, Tina and emily’s_mom for your replies.

    • Anonymous
      March 6, 2011 at 9:47 pm

      I have watched some of the webcasts, and I do not have a Twitter account. I do meet all of the other requirements, though.


    • Anonymous
      March 6, 2011 at 11:19 pm

      “say What?”

    • Anonymous
      March 8, 2011 at 6:18 pm

      No, don’t Say what? Say yes, I watched them or Say No, I did not watch them…..

    • Anonymous
      March 8, 2011 at 6:20 pm

      Yeah! Successssss. Thanks Mark. I’ll keep trying.

      I did try. I gave in, downloaded micro soft silverlight and now I am able to watch the webcast.

    • Anonymous
      March 23, 2011 at 2:22 pm

      Are they worth the effort, yuehan..???? I am just beginning the process…

    • Anonymous
      March 23, 2011 at 2:58 pm

      Okay… I got on finally by using the url [HTML]http://gbs-cidp.org/[/HTML]… When I typed that in to first enter the site it went to that address but with “index” after it and was apparently very old… It was announcing the symposium but no links to it… It must have been an old main page that my computer remembered…

      At any rate, I clicked on the link to get the pod casts, registered, and then gave them permission to access my twitter account (I never use it really and was surprised that my ID was changed to a variant I was using to get into another site) and BAM.. I was in…

      I think the twitter part was meant for those who wanted to comment on the presentation could share information… Unfortunately, this HAS been taken over by those disputing gun control… Just ignore it…

      The rest of the podcast was FANTASTIC..!!! You get to hear and SEE (I was a afraid it was just going to be an audio to listen to) AND they even give you the PowerPoint presentation that the people are seeing in the auditorium… It is pretty amazing…

      I have just started watching the first one on CIDP (hold on if watching it; she has to get a different mike when she moves away from the podium) so I will comment on the presentations themselves later if I can (if I CAN remember…)…:)

    • Anonymous
      March 23, 2011 at 3:34 pm

      Hello aimee,

      In fact, I do not have a twitter account and I am able to watch the webcasts.

      I agree that seeing the power point slides is nice. The first presentation I watched ended, I thought, at 39 minutes.

      However, the question and answer session which followed was also informative making the total time 59 minutes.

      I learned that when IVIG becomes ineffective one presenter likes to put her patients on plasmapheresis for a short time and then, bingo- the IVIG starts working again. She stated she does not know why.

    • Anonymous
      March 23, 2011 at 4:06 pm

      Don’t you get the feeling that we are all gunea pigs.. Good grief..!!!

      I am one of those “rare” persons she mentioned at the beginning who has had a spontaneous remission… About the time I was diagnosed and given treatment options (none of them sounded great) I thought I was starting to get over it… I just had an “inkling” that I could climb the step(s) needed to get in to my house… One day when I got back from town, I had my husband help me and with a rake in one hand and a hoe in the other I used them like ski poles to get up the back steps… First time on my own… I think if there had been railings I would have tried it before…

      Now I just have residuals but they are preventing me from getting the exercise I KNOW that I need… I am hoping one of these podcasts might give me some clue… My neurologists says the myelen has healed like 98% but I still cannot stand for long, have trouble with balance, and my arms get tired and fingers sensitive when used too much…

      What is your situation..???

    • Anonymous
      March 23, 2011 at 6:37 pm

      Thanks for the information regarding plasmapheresis being used to reactivate a response to the IVIG. One of my worst fears is that the Gamunex (which has worked so well for me) will lose its effectiveness.

    • Anonymous
      March 23, 2011 at 7:04 pm


      You’re welcome.

      It’s the benefit, for both of us, of participating in this forum.

    • Anonymous
      March 23, 2011 at 7:21 pm

      [QUOTE=aimee]What is your situation..???[/QUOTE]

      Hello aimee, If your meaning for ‘your situation’ means my personal situation, and not generally to all readers, then it’s this- I have severe axonal loss, severe nerve damage and major muscle atrophy distally with damage and weakness proximally also.

      It took 33 years, or so, from the first left side foot drop to get a tentative diagnosis by specialized muscle biopsy. However, there were also 20-25 years without symptom progression. I receive IVIG once per week, every week with a follow up clinical exam and testing due in July this year.

      After 13 years of getting worse I may, at least, be stable now.

      I’ll continue to watch the webcasts.

    • Anonymous
      March 24, 2011 at 2:14 pm

      Hi everyone. I have had CIDP for 18 months and work for the company Sonic Foundry that captured the sessions and providing the webcasts for the Symposium last November. Sorry to see some of you are having trouble logging in. in response to some comments/ questions:

      1. you do not have to have twitter account to watch the webcasts. there is a twitter feed associated with the event so that people could have had conversation around it.

      2. the webcast runs on any browser and you do need internet connection. if you can watch youtube videos you should have no problem watching these webcasts.

      3. The page that opens up is your ‘player’ of the webcast, and it is built on silverlight technology. it is a one-time plug in to your computer. it is a fairly standard much like flash but does require a one time plug in

      4. Why do you have to register? GBS/ CIDP is using the reports of who accessed/ when/ what sessions…to get a sense of what sessions are actually of most interest to people and how often. This will help them also make speaker/ topic decisions as the next symposium comes up

      Personally I review the webcasts quite regularly; info i have forgotten, or go back to as a reminder. I have passed the links along to my neurologists who weren’t able to attend the symposium as well and they too have found it helpful.

      If you still have problems accessing the webcasts, you can reach out to me directly at [email]pamelaw@sonicfoundry.com[/email] and i will do my best to help you. good luck!

    • Anonymous
      March 24, 2011 at 7:11 pm


      Thank you very much for sharing and offering to help.