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Who Will Answer Questions Regarding The Forum?


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#1 sleepless sleeper

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Posted 01 September 2009 - 03:22 PM

I have asked several questions regarding the new design, of which none have been answered. One moderator said that he hoped Stu got to my questions, but he hasn't. Stu did, however, state that he pays attention.

Last Thursday during chat in a separate chat room, Stu asked what topics or suggestions should be used for chats. At first the other lady and I were joking around, but we realized that Stu wanted some answers, which was great. I told Stu that in my thread asking questions regarding the web site that I had stated my doctor said that he would consider a chat on here one time, but I also said that Stu did not respond to let me know. Stu then said that he was not the only person here. I still did not get an answer to the question.

So, I have two questions. The first is geared toward moderators and web admin. I was going to send this in a message to every moderator listed, but I realized that the list includes board members and didn't want anyone in trouble. Who is responsible for web site questions and chat suggestions?

The second is for everyone: Is anyone interested to have a sleep doctor on here for an hour chat? A few months ago several members here said that they would love that, and not long ago I visited my doctor and asked if he'd do it because I thought that it would still be something that people here would like to have.

It would be nice to hear from a few of you.

#2 Stacy D

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Posted 02 September 2009 - 04:43 AM

It would be awesome to have a sleep doc on for a chat. I'm not sure one hour would be enough, but maybe there's one out there who wouldn't mind a regular gig answering our questions.

#3 Bafflegab

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Posted 02 September 2009 - 09:52 AM

Instead of having your physician chat live, might it be better to put together a Questions & Answer posting?

#4 sleepless sleeper

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Posted 02 September 2009 - 02:28 PM

BG, that was discussed with him. At first he was hesitant stating that he had recently given a lecture on insomnia. At the end of the lecture people kept him around for two hours asking questions (he's the kind of guy that wants to help so has a hard time saying no), and he was frazzled. I asked if it would be better if we would first compile a list of questions so then he could sort through and determine what may be more relevant to many of us. He could then come to a chat, discuss those, and then field a few questions. He was much more amenable to that, and said that he probably would with no promises. Like I said, though, he is a super nice guy that likes to help so I am pretty sure that he'll do it especially considering that NN is more widely recognized as a "gathering place" and a source of information for people with n.

It's been more than a month (July 27) since I first brought this up so don't hold your breath until whoever represents chat admin on here responds. As you can see, no one has responded to that question, either.

#5 sleepless sleeper

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Posted 03 September 2009 - 10:24 AM

Stu, are you going to answer? Marcianna? Mike? Whoever else is involved with this forum?

#6 Marcianna

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Posted 07 September 2009 - 01:06 AM

Sleepless,

I am so sorry. I have taken some time off due to a couple of funerals I needed to deal with. Im still not doing so great at the functioning thing right now... But I am sorry I did not see this post till just now.

I did not realize your questions havent been answered yet. I was not even able to make it to the first Chat which I wanted to badly.

As far as having your Doctor here, it may take longer than you would think to look into this, as it is not up to us. Likely Stu will have to take it to the web committee first, then probably be approved by the

Board. (which could take a very long time) We need to be careful, as anyone could come on here and say they are a doctor you know? His credentials and all will have to be checked etc etc... And legally we

cannot give medical advice on the forum officially. We just have a range of topics that we discuss here as patients and our experiences.

What Mike, Kelli and I do is basic stuff. Stu pretty much handles everything of any sort of importance. And Unfortunately he has been extremely busy lately, because of the changes in the website and the

conference being right around the corner. I will give him a call and ask him to address these concerns of yours.

Thank you very much for your patience.

~ Marcia

#7 greatbig47

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Posted 07 September 2009 - 11:04 AM

Who is responsible for web site questions and chat suggestions?


To answer your question, the board members of the Narcolepsy Network are responsible.

It has been brought to my attention that I performed outside the scope of my job by holding this chat, even though all of the chat preparation was done on my own time, and with NO admin functions, meaning ANYONE could have done exactly what I did.

It is my understanding NN has the abilities to hold extremely successful chats, but is terrified that some kind of legal repercussion from doing so may hurt them later. They have shown no interest in serving narcoleptics with this technology at this point in time.

I highly reccomend contacting a board member and make these suggestions. While the numbers from our first experimental chat were spectacular, the response I've received was of great grattitude, the number of return users to the forum was impressive, the board has shown no interest in using the Chat function to further their progress. I have no explanation why this would be. You would have to ask them.

Neither my wonderful moderators or myself have any control over this whatsoever.

Many of the board members are involved with the chat over @ TAS, and haven't shown any interest at all in having chat sessions here, where the user is Narcolepsy-specific. The oppurtunities and benefits of using a chat session to promote the conferences are plenty. I have no explanation for their decisions. I do not know why they choose to promote a commercial for-profit site (TAS) and not their own website (where, again...it is narcolepsy specific).


Is anyone interested to have a sleep doctor on here for an hour chat?


Everyone is interested. Until the board members are convinced this is something the online community is screaming for, I doubt it will happen any time soon.

Thanks!!!

-Stu

#8 greatbig47

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Posted 07 September 2009 - 11:05 AM

Who is responsible for web site questions and chat suggestions?


To answer your question, the board members of the Narcolepsy Network are responsible.

It has been brought to my attention that I performed outside the scope of my job by holding this chat, even though all of the chat preparation was done on my own time, and with NO admin functions, meaning ANYONE could have done exactly what I did.

It is my understanding NN has the abilities to hold extremely successful chats, but is terrified that some kind of legal repercussion from doing so may hurt them later. They have shown no interest in serving narcoleptics with this technology at this point in time.

I highly reccomend contacting a board member and make these suggestions. While the numbers from our first experimental chat were spectacular, the response I've received was of great grattitude, the number of return users to the forum was impressive, the board has shown no interest in using the Chat function to further their progress. I have no explanation why this would be. You would have to ask them.

Neither my wonderful moderators or myself have any control over this whatsoever.

Many of the board members are involved with the chat over @ TAS, and haven't shown any interest at all in having chat sessions here, where the user is Narcolepsy-specific. The oppurtunities and benefits of using a chat session to promote the conferences are plenty. I have no explanation for their decisions. I do not know why they choose to promote a commercial for-profit site (TAS) and not their own website (where, again...it is narcolepsy specific).


Is anyone interested to have a sleep doctor on here for an hour chat?


Everyone is interested. Until the board members are convinced this is something the online community is screaming for, I doubt it will happen any time soon.

Thanks!!!

-Stu

#9 duff8

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Posted 07 September 2009 - 01:41 PM

I have asked several questions regarding the new design, of which none have been answered. One moderator said that he hoped Stu got to my questions, but he hasn't. Stu did, however, state that he pays attention.

Last Thursday during chat in a separate chat room, Stu asked what topics or suggestions should be used for chats. At first the other lady and I were joking around, but we realized that Stu wanted some answers, which was great. I told Stu that in my thread asking questions regarding the web site that I had stated my doctor said that he would consider a chat on here one time, but I also said that Stu did not respond to let me know. Stu then said that he was not the only person here. I still did not get an answer to the question.

So, I have two questions. The first is geared toward moderators and web admin. I was going to send this in a message to every moderator listed, but I realized that the list includes board members and didn't want anyone in trouble. Who is responsible for web site questions and chat suggestions?

The second is for everyone: Is anyone interested to have a sleep doctor on here for an hour chat? A few months ago several members here said that they would love that, and not long ago I visited my doctor and asked if he'd do it because I thought that it would still be something that people here would like to have.

It would be nice to hear from a few of you.


Hello and thanks for your inquiry. I am only reading your post for the first time so please bear with me.

Administratively this topic should be presented to the website committee specifically and then to the entire board. We already have a medical advisory board that deals with questions specfically from NN members. Their commitment to help PWN amazes me.

I will make sure this message is presented to the website commitee.

The workings of the board for just the month of August include: the Newsletter, JAX conference, conference 2010, NSART, Nurses brochure, (the tasks are endless). Please continue to ask. So stay tuned while we work for all members of NN to the best of our ability.

#10 sleepless sleeper

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Posted 07 September 2009 - 04:10 PM

Thanks guys. But what about my other questions in the other thread?


Back to the Chat topic:

There were many pwn's here the night that we had it. The next day, several of us were discussing how great it was on facebook. If the NN Board is so worried about legal actions, then why don't they at least allow the chat room to be open for us to talk to one another? Until whatever issues are worked out regarding guests, why don't they allow us to at least use it for ourselves? Stu was quite gracious with his time, and we all appreciate him for doing it. It was a success and a resource that many of us want to use.

I understand that the Board is committed to serving our community of PWN's, but so are we. I am absolutely committed to helping others like me. I do it on facebook everyday. From that, I know that we can help one another on here with a chat that would never cross any legal boundaries. There are many of us that need another pwn to talk to "immediately" in order to cope with what they are going through that day in regards to their Narcolepsy. Some of us only have a day or two here and there, but a few others need a similar friend on a more regular basis. I often refer them to information that is on NN and within the forum, or I ask them to post a topic here. What is sad is that there are many pwn's on facebook that are not members here, or they are but have not been in a long time and haven't wanted to come back.

When I first signed up with fb, I gathered as many pwn friends as I could. I sent many of them here. Coincidence that during that time period that NN saw an increase with new users? Last week I posted a fb poll asking if pwn's would like to have a sleep doctor on chat here. I then talked to several and incouraged them to come here to take the poll. I know for sure that at least one new member came here and a couple others came back after not having been here in a while.

This happened with the Chat that Stu had. Several of us on fb rallied a few troops, and I know that there were some pwn's here that had not been here in a while. They enjoyed it. They wanted to come back. I've had a few ask me on fb when we were having it again. If anything, wouldn't the chat get people here? Is that not the number one reason for NN's existence?

#11 Marcianna

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Posted 07 September 2009 - 08:50 PM

Thanks guys. But what about my other questions in the other thread?


I addressed most of these last night. If there is anything I missed let me know.

#12 sleepless sleeper

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Posted 08 September 2009 - 12:49 PM

I addressed most of these last night. If there is anything I missed let me know.


Where would these other issues from the other thread answers be located?

AH! There it is. Curiously it did not show up yesterday in Active Content, but it is there today.

#13 sleepless sleeper

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Posted 10 November 2009 - 01:12 AM

Hello and thanks for your inquiry. I am only reading your post for the first time so please bear with me.

Administratively this topic should be presented to the website committee specifically and then to the entire board. We already have a medical advisory board that deals with questions specfically from NN members. Their commitment to help PWN amazes me.

I will make sure this message is presented to the website commitee.

The workings of the board for just the month of August include: the Newsletter, JAX conference, conference 2010, NSART, Nurses brochure, (the tasks are endless). Please continue to ask. So stay tuned while we work for all members of NN to the best of our ability.


What happened when this was presented to the website committee? Several people have asked about it.