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scooky1

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Reply with quote  #1 
It has been brought to my attention that not so many of us have been posting to the board, I know summer is comming on and most of us must stay out of the heat (heat sets me off bad) but with all the hard work the people who run the board and what they do for the cause it would be nice even if you have good stuff to post, that just might be something for people who were just looking around for help perhaps someone who needs us might stop by and check us out, most of my friends are face bookers and I try facebook but keep comming back to pukebook, this is world wide and I see there is need for support in the UK and I'm sure many other countries. What can be done to further our cause? I am so sick of it,LOL but when I read the MB last and the people who are asking/begging for our help and I hear from some of the moderaters that people are  not posting as much anymore, that tells me that there are not so many people haveing CVS! Don't think so! if we band togather we can make more things happen for the young families, the adults and the cause. please post, stay involved and come up with ideas to get the word out(don't shave your head and go to the airport!) but keep up and support the three moderaters we have who are working so hard for us,not to mintion the people/person in the CVS office, thank you,thank you,thank you to you guys. just wish there was a way to repay you's. BIG LOVE TO YOU ALL! all I can do is say my deepst thanks! Be well, Steve
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wynnak

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Reply with quote  #2 
Steve, 

It's not that there aren't people suffering. Quite the contrary, I think I am hearing more diagnosis than ever. They are just looking somewhere besides the Message Board for support. Someone on Facebook commented that they didn't know about CVSA, that they couldn't find the Message Boards, the responses are not immediate. Facebook, there is always someone there to respond. 

We have banded together to do something. It's called CVSA. Although people know about CVSA, most everyone I talk to who is a sufferer, Caregiver or family member is not a member of CVSA. Has not or does not intend to be a member or support CVSA with a donation. CVSA is a non-profit and they run on Donations, fundraisers and membership fees. The brochures, the Newsletters, the New Adult Guidelines that Ginny has been telling you about, the booth at the GI conference that was just in Chicago. The moderators, the Facebook Admins, the Support call people, The Board and so much more, are Volunteers. You can see that from the post time on here.. and the days.. We are here all the time. As volunteers. 

We love enthusiastic and involved people like yourself. SO keep spreading the word. GO visit "PukeBook" and let them know that you like it better here. I do recruiting over there as well. But with the low involvement on the Message boards, it is hard to keep people's attention. That  is why we have tried things like Topic Tuesday.. But.. no one is commenting on the topics. We can't learn from each other if we aren't sharing or talking. 

Keep up the conversations, Steve! It keeps people talking! Thanks for the thumbs up! 

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Blynda
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ginny

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Reply with quote  #3 

Great post and topic!  Much appreciated.  I check the views on the inner workings of the MB and the numbers are there but not all visitors are "real".

It is true that most don't join CVSA. At one time I was required to remove MB members if  they did not join CVSA either with payment or with a scholarship.   It was very difficult to remove active participants who needed the support.  Many years ago this was all changed and while CVSA is heavily dependent on donations, somehow the founder, Kathleen Adams, has always found a way to keep the organization up and running.

The Sunday that Chandra Wilson joined and then telephoned me was the day we had the highest number of visits on the MB.  

I keep checking our numbers and when we hit a low it will be time to take this format down.  I assumed decrease in activity was because people were getting great help from their medical community and were more readily diagnosed.    


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ginny CVSA Moderator
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ginny

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Reply with quote  #4 
Here are our numbers.  I think around 1/4 are bots.

Page View History

2017 

MonthViewsViews/DayChange
May316,36514,380 
April446,22414,87426%
March609,53819,662126%
Feb269,6729,63171%
Jan157,1185,06870%

3 months change: 184%

 

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ginny CVSA Moderator
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wynnak

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Reply with quote  #5 
Removing Non-members was quite awhile ago though, I believe. Just like the High, as you mention was Chandra's first initial diagnosis as Ginny said. That was at least six-years ago. The Height of the worst for me, when I relied on the Message Boards for support. I don't see that happening now. More and more people are turning to Facebook and other social media sites for support. 

Those numbers Surprise me. A lot. I see the views on the actual topics on the message boards and see the views vs the comments and don't see a lot of change each day. March had a couple things affecting it though.. The CVSA Facebook page was posting direct links to the Message Boards, and Topic Tuesday Posts. 

Steve, we have been working to redirect people to the Message Boards. The archive base alone is worth stopping in to read old posts. We've been trying to post topics that interest people to get people talking. It is all a process. Your ideas are not falling on deaf ears. We have all been trying [smile] and trying new things. We all work very hard. 

So like I said.. let people know on other platforms how much you like it here. Let them know it's here. Becasue what we have going for us.. is the drive, determination and support of the people using it [smile]!!!

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Blynda
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scooky1

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Reply with quote  #6 
thank you!
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