My, this forum has slowed down since I was active…
May 7, 2014 at 9:09 pm
It’s been a while since I was active on this forum– perhaps six or seven years. My alias was “Rocker.” I think I was the only person banned from the other Forum, which occurred because I called another participant a few foul words. I was upset and frustrated by his foolish comment on one of my threads, and lost my sense of judgement. I found it ironic that after helping many GGSers, I’d get the boot over a topic that was related to improving the BBS/Forums, but I did not abide by the rules. It was the only time a Forum/BBS administrator from the foundation actually participated in the Forum, the one post explaining why he closed my thread.
The forum is slow-moving with few participants despite the fact that over 30,000 GBSers are afflicted each year in the US alone. It has become an inactive Forum with little structure to differentiate it from other web sites that have the advantage of being multifaceted. Generic medical sites, with no emphasis on GBS/CIDP, have become the places where those researching GBS/CIDP receive their information, is my guess. What’s more, those who visit this site do not enroll and participate in engaging Forum discussions; the conversion of new visitors to forum participation must be abysmally small at this point.
You see, I’ve been an active participant in quality forums and Internet community building around the world since 2000, and, sad to say, this Forum was far more active five years ago than as it is now, as indicated by the number of thread and post counts. What, nobody at the foundation noticed the decrease in participation as an issue?
*No sticky threads pasted to the top of a category, “working threads” in the lead poster continues to change and update, as members participate and help to develop the thread usefulness.) For example, to name a few, a knowledge links thread that provides links to medical research found on the Internet, and a government resource thread that provides hyper-links to FED/State/Territory resources, and related articles. A strong ‘working’ sticky thread would have been so useful to so many.
* No Forum-based development resource threads, such as, State forum categories that promotes local team-chapter building, a virtual mode of communications for members to find each other, as opposed to the one-slot general forum.
* No structure for the long-term chronic residual issues. That is, no closed forums for long-term participants to express themselves without concern for family and general surfer participation. Such venues provide a greater level of intimacy, promoting community building.
* The foundation touts ‘international’ status, but the only forum is English? More GBSers in China and India than anywhere else, since they have vast populations. This is a clear indication of non-forward thinking, since country-driven web pages and forums fall directly in line with the foundation’s objectives. I still hold the premise that an active Forum yields far greater community services than one with few posts. This is sad, to see this important Forum set way on the back burner, where as it could be the driver for improved fund raising.
The CIDP side of the partition is most certainly more active, due to the chronic nature of the disease, yet I still don’t see any live-texting or voice program support, which does not bode well for differentiation when compared to other websites that promote community building. Nor do I see a place where chapter groups can exchange ideas with each other via a forum designed for such a purpose.
In closing, a highly active Forum will generate additional foundation donations, provide a medium where member participants can interact with foundation staff, to make the web-presence stronger. Of greater importance is to build a web-presence that promotes interaction, as opposed to a corporate structure seemingly preoccupied with other matters.
Thrilled to see this site exists today, that the afflicted and family members have a place to read and ask questions. Certainly, this Forum is of great value. And I realize most are probably fine as things stand today. I’ll try to stop by more often!
September 23, 2014 at 10:19 am
it has all but come to a dead stop. The information here is poor for the most part and lack of support makes getting through the tough times more difficult. Wonder if people looking for information or support know that MDjunction has a ton of different active groups pertaining to GBS? I guess they do now. It is a shame this forum has fallen by the wayside because it was at one time a haven and a big help.
September 23, 2014 at 4:37 pm
This forum was once very active but has fallen prey to inactivity and spammers since the ‘foundation’ has focused its efforts (unfortunately) on its Facebook page. I will have nothing to do with FB due to its anti-privacy data-mining business model.
Yes, http://www.mdjunction.com/guillain-barre-syndrome appears to be a little more active. But the real deal these days is: http://www.livingwithcidp.org/forum You will find many of us ex-CIDP forum members there.
Too bad the foundation doesn’t support its forum anymore.
September 23, 2014 at 9:28 pm
Jim, I agree. It’s a disgrace that the Foundation can’t be bothered to do elementary maintenance of its website to eliminate spam. I used to complain about it, but nothing much came of it. I’ll probably stop contributing (financially) If they don’t do something soon.
September 26, 2014 at 3:35 pm
I wrote the foundation about the forum problems and got a response this time! It seems they have already started to clean out the spam and add security measures to keep the spammers away. I hope they don’t make it too hard for us members to view the forums and participate.
A big thank you to the foundation for their efforts to improve and support this forum!
September 26, 2014 at 4:10 pm
I did also. Part of the problem is that the person who had been doing what little administration there was has been gone for awhile.
September 26, 2014 at 5:39 pm
Very much appreciated fellas. It was becoming totally out of hand. It had all bar ruined the most informative information forum that we have. God only knows we all have enough problems already without that rubbish.
September 30, 2014 at 6:08 am
I agree that fixing this website is a must. Oct 15 will be 2 years for me. I will always be grateful for many of the insights I learned, especially during the first year.
November 28, 2014 at 8:27 pm
This is the first time that I’ve been able to login in months! I kept getting the red screen warning me of malicious behaviour.
January 17, 2015 at 4:51 am
Yes, it is as if the perception with the foundation is that this forum of interaction is not significant. From what I read, it seems like the focus is exclusively on fund raising, such as grants to support salaries and office space in PA, and symposiums at places where doctors might enjoy leisure conversation, compared to practical aspects related to education and therapy for the GBS afflicted. Again, the issue of residuals and chronic care for ongoing patients with residuals is lacking in planning, and this forum is a perfect example of a core lack of insight fostered here for many years now. That is, this web presence speaks volumes on a skewed focal point…. just look at the web pages and the content, how the forum link is as if an afterthought. Perhaps I should read up on what the foundation does with the grants, and the financial statements of the institution, which I am sure are public? (please post a link to financial report for the foundation) Look, I’m sure some workers are doing a great job… but the lack of focus on creating a virtual meeting place is inexcusable, and indicative of something more systemic. In fact, this web site is far less professional than many internet computer gaming groups I participate in, whose budgets is nil. At least they had the common sense to not use a flash BBS…. blah, and comprehend the significance of sticky threads to update participants on a host of issues. So, I hope someone receives support and knowledge here, but as stated above, the level of customer services for this medium is poor at best. Getting rid of spam…. an elementary aspect of any forum. Please help me understand that this foundation is run well these days?
My post was initially written what… ten months ago… but no reply from a staff member or an authorized volunteer… same as usual, since I see no change in behavior compared to many years ago, when the forums were still slow and as poorly run, except at least there was some activity. May as well shut the joint down, from what I can see here. Disgusting, I say. Totally symbolic of the internal workings of this institution, is the way it seems to me.
January 17, 2015 at 6:37 am
Hey, I found the financials! Thanks!
January 18, 2015 at 6:26 pm
Matt, it has never been the case that moderators participate in the forum to any significant extent. The moderation has improved recently, with the spam finally being removed.
You were not the only participant blocked for bad behavior. I don’t see this as a signifying anything wrong with the site, but rather with certain participants who don’t adhere to rules of decorum.
Much of the content of the old site was from people who were treating it as a social networking site, which it is not, and they have moved to a site which is a more appropriate place for that. There were also quite a few people promoting quackery of various kinds who seem to have given up. Good riddance.
My view is that the site is more substantive than it used to be. The substance was present in the old site, but buried in a lot of noise.
The site will not be shut down merely because you decline to participate or express dissatisfaction with the way it is operated. If you don’t like it, don’t use it.
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!
January 19, 2015 at 12:23 am
This is constructive criticism, so I don’t mean to implt that I think such criticism is unwelcome. I hope the new administrator reads these posts and considers your concerns and suggestions. It would be better if a forum were devoted to site issues, however.
The site could use a little work, but I suspect that they don’t have the resources to devote to it. I think they have been spreading their resources thin by implementing an alternative site in another place. Since I do not use the other environment, it might as well not exist, as far as I am concerned.
By “social networking” I mean more than merely the ability to have a conversation. People who are into social networking want features like private messages, “friends,” the ability to block the view of some members’ posts, and other junk in that vein. We had private messaging in the old site software and somebody used it to harass me. That crap doesn’t belong here. If you have something to say, say it openly.
It might be better if there were more participants here, but I suspect the low numbers just reflect the fact that most people with a medical disorder get their advice from their doctor, as they should. I rely on my doctors for medical information and advice, but come here regularly to try to help anyone who may have questions or concerns. True, there aren’t many here, but if I can provide a little help to someone now and then, I feel it is worth it.
February 12, 2015 at 10:13 pm
One of the reasons I have not been here much lately is because of the red warning screen I got for the longest time when I tried to login. My anti-virus warned me that it was dangerous. Eventually, I quit trying and forgot about checking in here. Still hasn’t become a habit again.
February 13, 2015 at 12:06 am
Those using IE, especially an older version, may get the warning screen Azgold mentioned. The reason for this is The security certificate presented by this website was issued for a different website’s address. The foundation has since made server changes that affect the certificate. The foundation needs to update their site certificate before the warning will stop. In the meantime, it’s safe to ignore the warning and you should click “Continue to this website (not recommended)” if given the option.
February 17, 2015 at 8:46 pm
Thanks, Jim. I only use Firefox but I’m sure it’s the same for both browsers.
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