Ahhh I woke up this morning to a flood of emails in my inbox too! For those of you here, I want to express my sincerest apologies for absolutely INUNDATING your inboxes. We’re still trying to figure out what went wrong, but all email has been disabled for now.
I want to also share a little back story on our new website. Just like you, I started with Ben’s Friends when our old websites were up and running. I liked them a lot, too! The layout was familiar, and it was easy to make really connections. Unfortunately for us, the company that hosted those websites went out of business, and they went out of business FAST.
We had to scramble to save years of discussions and community building in order to still provide a site where you can come for support, advice, and friendship. We recognize that this site isn’t like the old one, and we’re working hard to make it better for you. For that, we need your help!
It would help us out if you could comment here about changes you would like to see. We will keep you updated on our progress in getting those changes made.
From all of us volunteers at Ben’s Friends (it is 7:20AM here, and I have yet to have my morning coffee!), I hope you all have a wonderful week and that we will talk soon
It isn’t that we don’t appreciate these circumstances, we do ( now comes the BUT). But we just want to talk to each other about our experiences, our treatment or lack thereof, our frustration with inexcusable delays in diagnosis, our benefits or complications from various treatments, in short, we want to learn from and support one another. That helps all of us deal with this most confusing of diseases. I speak for myself when I say I am not interested in anything (read clutter) that distracts us from that goal. Or worse, frustrates us into disusing the site, Clean, uncluttered, simple, and easy to navigate web sites get the most traffic and are the most beneficial. All the subdivisions and use of databases that may be neat to programers, may be frustrating and confusing to users. Bob N.
I don’t know that we have all of that, but we have only add two additional categories from the original two sites that were combined and eliminated 12 (they were groups and several hundred seperate blogs were categorized)There are seperate areas for the three main Polyneuropathies While they are very much the same there are some distinct differences.
Heres the funny thing The MOST common request we are getting is to add back those categories. I personally would be happy with many fewer but most of our members in our 30 active communities can not or will not use the search function to find quick answers to their questions.
The main difference with the new site is everything categories and most recent posts are all on one page instead of 6. Trust me I understand what you are saying but to customize what we have to be like we had comes at close to $250,000.00 in custom coding. We needed to first to save what had which was brought over categorized as it was on the old sight. Many many hours (over a 1000) were spent by 3 volunteers recategorizing the posts in the categories we eliminated to simplify what we had.
I do think though as you look at all the categories after the newbies guide, we could probably eliminate the subcategories and make them a single category. What do you think of that?
Also we will be replacing the messaging set up we have with a “shoutbox” direct chat that will make group interaction much easier… Expect that in the net few weeks.
I first found this site 2 years ago when I was searching for anyone in the world who might be experiencing what was happening to me and possibly understand what my doctors did not. It has meant so much to me through my recovery. I appreciate all of the hard work in trying to preserve this forum and hope improvements will continue. Looking forward to the direct chat! I do miss being able to individually message people with specific questions. It might be possible now but I haven’t been able to figure that out.
To get into the messaging system click on your avatar in the upper right hand corner and click on the envelope. you can send messages from there. (as well as see what you have recieved) You can use the search function to find your friend where it says add a user start to enter their name and a list will pop up. You don’t need to have their complete name
an other way is to simply click on the avatar of the person you want and it will take you to their profile and a blue box saying message will pop up
Another cool feature is in any post put the @ sign and a list will pop up (of people active in the thread) you can start a search by starting to type their name so if you for for example @Tarhealing they will get an email directing them to the post.
Another option is if you look at the bottom of a thread right next to the blue reply box is another icon labeled invite. If you click on it, you can send an invite (and a message) to a friend inviting them to the thread.
