Reply To: My, this forum has slowed down since I was active…

January 18, 2015 at 8:02 pm

I guess I’ve expressed my frustration with how much more helpful this site could be for those of use who have residuals, especially on the CIDP side. Certainly, this presence provides knowledge and focus, but most of the GBS literature points to this site… many medical staff send families here. Yet, look at the participation level on this forum! 35,000 GBSers in the US, and I see a post here once in a blue moon– they are getting their questions answered elsewhere. GH, I know the forums have never been correctly moderated. There is more to moderation than taking care of the basics like spam. That is part of the problem I see here. Yes, the content is better now, as are zillions of other sites, many who take social aspects much better.

I’m not clear on your understanding of social networking, but this is what we are doing right now? My take is that those who are social are utilizing the strength of the group to heal; a strong social network is important! What, the place is better off now that highly knowledgeable, and helpful, GBSers have left for greener pastures? Look, the support here for families with questions is far worse than it ever has been, so my guess is they go elsewhere. What’s the sense in taking time to register if there isn’t anyone here? I’ve earned the right to express satisfaction because for YEARS I’ve made excellent recommendations, which for YEARS sat unattended, and now look. I am disgusted, for sure.

GH, I’ve been involved in virtual communities for close to 15 years, even built a few. The concepts apply to a medical forum as much as any other special interests: a web presence becomes stronger when volunteers take a vested interest. It helps build a knowledge base and helps the friendly helpers by giving them something to feel good about. This is an outdated medical model I see here, a static website where the moderator is an IT guy taxed with technical matters whereas trusted long-term participants should be at the core of this point of presence. Yes, you are right, GH, I don’t like it and, like so many who can help those in need, I don’t use it. So, I see the significance of the foundation, that this site will remain helpful, but why have a forum if know one uses it? May as well pull the plug if it remains as such. That said, cya in a year or so, to see what may have changed… fingers crossed.

/can only edit my post twice? I can’t see the paragraph while I am writing it! Blaaaahhh!