Use of the forum

Re: Use of the forum

Postby emer » Mon Jan 02, 2012 2:22 pm

Hi Bill - sorry, please don't misunderstand me, I know acromegaly is extremely rare, as are a lot of the other disorders on the forum! I merely meant that on a global forum like the internet, where there are literally millions and millions of people, it is relatively easy to find forums and support groups of numerous people with the condition, even though these people may never have come across someone else with acromegaly in "real life" - purely because the internet facilitates the meeting of these very rare people, even though they may live thousands of miles apart.

I was speaking purely from my perspective as someone with a TSH-producing pituitary tumour, which is even rarer than acromegaly - or possibly just vastly under-diagnosed, although either way it pretty much works out as the same thing, in that I have never found a single other person on the internet with my condition, in the past year-and-a-bit since my diagnosis, whereas I have found numerous groups for people with acromegaly, cushings and other disorders. Which I'm very grateful for, please don't get me wrong, a lot of the treatments etc. are the same and I've enjoyed reading the websites and blogs written by people with different but in some ways similar conditions. I simply mean that for someone with a rare condition like acromegaly, I can see that joining a support group for people with their specific problem, especially if it's free, may be more appealing than joining a more general support group like the forums here.

I just mean that I live in vague hope of finding one of the others out there with a TSHoma and that for me, and others who have either stupidly rare conditions (or maybe unusual combinations of conditions), it's great to have a forum for people with all kinds of pituitary issues, and that it would be even better if it were in more regular use!
emer
 
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Re: Use of the forum

Postby Bill » Mon Jan 02, 2012 3:13 pm

It would be good also to see more people using the Facebook page the PF should maybe push it a bit more in the newsletter. :)
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Re: Use of the forum

Postby emer » Mon Jan 02, 2012 5:10 pm

I don't know if anyone else would agree, but I thought it might also be nice to have a section of the forum just dedicated to general chat - somewhere that new members can introduce themselves and people can chat about things not directly related to the rest of the forum? It might be a nice way to get to know other members of the forum and encourage more of a "community" feel?

Although I have to admit, I haven't seen the Facebook page so I guess that might fulfill a similar function already. Will have to go check it out!
emer
 
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Re: Use of the forum

Postby Bill » Mon Jan 02, 2012 5:24 pm

People just aren't coming to the forum on any sort of regular basis. We really need something to draw them in, and,to be honest I don't think a "general chat" section would do the trick. I still think what we need is to be able to chat in real time - in other words an actual chatroom as well as the forum.
At least on FB you do have the option to chat in real time. :)
Bill
 
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Re: Use of the forum

Postby emer » Mon Jan 02, 2012 6:03 pm

I'm not sure - I guess a chatroom might work, but if you look at the forum statistics, there's never been more than 11 people online on this forum at once, and that was over a year ago and probably included non-members anyway. Chatrooms are good in large forums but this has such low useage that I doubt it would work - you'd just go into the forum, leave a message, wait, and no-one would come in! Plus it's nice for new members to be able to read old topics and discussions that may be relevant to them. I think a general chat board on the forums would give the option of chatting in real time, but also allow people to continue conversations over longer periods where they want to?
emer
 
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Re: Use of the forum

Postby emer » Mon Jan 02, 2012 6:04 pm

It would also have the advantage of being somewhere obvious to put posts like this debate itself, thinking about it - as it is, members who don't use growth hormone might not read this thread, and we have a couple of parallel discussions on this same topic going on all over the place!
emer
 
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Re: Use of the forum

Postby Bill » Mon Jan 02, 2012 8:21 pm

If people knew that they could speak to someone live in chat I'm sure this would encourage more people to come in. As you say, if you look at some of the posts on here there are posts about the same things being posted all over the place. Its far from an ideal situation. :(
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Re: Use of the forum

Postby Mgh » Tue Jan 24, 2012 4:32 pm

I have just joined the forum having joined the Pituitary Foundation about nine months ago when I was first diagnosed with a pituitary macroadenoma. Once I actually got around to it joining the Forum was very straightforward. My experiences of the past nine months have resulted in a steep learning curve and I am in a very different place from where I expected to be at this stage. Having said that I am now happy that I am on the right road. I hope to be able to contribute to and gain from using the forum in the future. I have kept a diary of sorts through these last nine months which reminds me of much I had temporally forgotten.
Mgh
 
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Live Chat Please?!!!

Postby Coco » Wed Jan 25, 2012 11:49 am

Maybe the PF could set up online social events in a live chat format (or Facebook or here if they have the facility) e.g. every Tuesday and Thursday between 7.30pm and 9pm. If there were specific times for live chat I think it could attract enough people to make it worthwhile. It could be done with the minimum organisation - a feature on the website and a few lines in Pituitary Life so that people are aware of the times.

I think a lot of people (including myself) would find this a great support and wonderful way to connect with other pituitary members.
Coco
 
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