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kasa x View Drop Down
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Joined: 17 Jan 2011
Location: hampshire
Points: 45 		Post Options Post Options   Thanks (0) Thanks(0)   Quote kasa x Quote  Post ReplyReply Direct Link To This Post Topic: facebook
    Posted: 17 Jun 2011 at 6:58pm
Hi phers why doesnt anyone go on this site now,is it because everyone is on facebook, xxConfused
kasa x
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paulinemjc1 View Drop Down
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Joined: 21 Oct 2010
Location: Shropshire
Points: 106 		Post Options Post Options   Thanks (0) Thanks(0)   Quote paulinemjc1 Quote  Post ReplyReply Direct Link To This Post Posted: 17 Jun 2011 at 7:30pm
Could be!!! There are quite a few of us on Facebook.
Mum of 7. Nick, age 23, has Downs syndrome, PH, Eisenmengers, tube fed, other complex medical needs.
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Rita View Drop Down
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Joined: 21 Oct 2010
Location: Brecon Wales
Points: 397 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Rita Quote  Post ReplyReply Direct Link To This Post Posted: 17 Jun 2011 at 10:42pm
Hi Kasa
As Pauline said there are a few of us on Facebook, but it doesn't
stop me still looking in on the site, as I know a few others do, perhaps
with a little bit of luck nobody is having problems, so it might be a good signThumbs Up
Take care
Rita x
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joanielg View Drop Down
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Joined: 24 May 2011
Location: Australia
Points: 106 		Post Options Post Options   Thanks (0) Thanks(0)   Quote joanielg Quote  Post ReplyReply Direct Link To This Post Posted: 18 Jun 2011 at 3:15am
I would say yes.  Unfortunately we are finding this in Australia too, it doesn't look good for new members either and I don't know how we can change it.  We do have members that do both but I just wish the members would understand that it's the association websites  that new patients go to first and the older ones don't necessary use facebook.  I do both.  If anyone has ideas how to overcome this I would like to hear them.

Aussie Joan Smile
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Karen View Drop Down
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Joined: 21 Oct 2010
Location: Essex
Points: 558 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Karen Quote  Post ReplyReply Direct Link To This Post Posted: 18 Jun 2011 at 9:18am
I look on  this site every day at least two or three times. I must say too that alot of us are on facebook and we do chat from time to time. Though if anyone got a PH problem they would put it on here first I am sure. At the moment maybe it is like Rita says that maybe no one got any problems so that is a good thing. Smile 
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Rita View Drop Down
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Joined: 21 Oct 2010
Location: Brecon Wales
Points: 397 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Rita Quote  Post ReplyReply Direct Link To This Post Posted: 18 Jun 2011 at 10:36am
If you look on the memberlist about 50 members out of 140 have actually logged in
the last week, that is without the ones who don't neccessarily log in, so I don't think
that is bad in numbers.
 
Rita x
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Miriam View Drop Down
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Joined: 25 Oct 2010
Points: 240 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Miriam Quote  Post ReplyReply Direct Link To This Post Posted: 18 Jun 2011 at 2:58pm
So here's the thing.  I'm here almost every day and my feeling is that nobody has problems that are bugging them enough to ask about, because we all have problems!   Am also on Facebook but I only look at that maybe once a month, if not less....
 
It's fashion!  Today Facebook, tomorrow something else, but this forum is always here and, as Rita & Karen say, many of us are popping in and out to see what's going on, if there are questions or something to discuss or if someone needs help. 
 
So I don't think that the fact the sometimes there are periods when people don't add posts means that we've deserted the Forum.
Live, Love, Laugh!
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debsie View Drop Down
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Joined: 29 Oct 2010
Location: West Midlands
Points: 117 		Post Options Post Options   Thanks (0) Thanks(0)   Quote debsie Quote  Post ReplyReply Direct Link To This Post Posted: 18 Jun 2011 at 8:25pm
I must admit i do use facebook but the first thing i do everyday when i put on my lap top is check in on the site,then i go on to facebook and play my games ,but i also check back in before i close down every night,like the others have said i think we must all be fairly well at the moment,im sure like most of the others if i have any problems with my ph its on here i will be telling people not facebook,take care all ,love Debbie xx
hugs and kisses
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jet View Drop Down
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Joined: 21 Oct 2010
Location: Reading
Points: 349 		Post Options Post Options   Thanks (0) Thanks(0)   Quote jet Quote  Post ReplyReply Direct Link To This Post Posted: 18 Jun 2011 at 8:28pm
I agree and if I had something PH related I would put it on here, however posting things on FB does extend the knowledge of PH to others who may well have never heard of it.  I know plenty of my friends on FB have asked me about PH, so it does some good too! x
Had Lupus for at least 27 years diagnosed with secondary PH in 2006
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joanielg View Drop Down
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Joined: 24 May 2011
Location: Australia
Points: 106 		Post Options Post Options   Thanks (0) Thanks(0)   Quote joanielg Quote  Post ReplyReply Direct Link To This Post Posted: 19 Jun 2011 at 4:20am
That's the way I look at it Jet.  Facebook will reach a diverse "audience" and spread the PH Word.  The forums will answer our questions and assist the newly diagnosed.  Just wish some of our long time PHers would contribute to our website more to help the newbies.  Can't force them take part though, we can only encourage them.

Aussie Joan Smile
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nicky View Drop Down
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Joined: 23 Oct 2010
Location: Leicester
Points: 21 		Post Options Post Options   Thanks (0) Thanks(0)   Quote nicky Quote  Post ReplyReply Direct Link To This Post Posted: 19 Jun 2011 at 8:52am
I still look on this site to see how you are all doing.
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Karen View Drop Down
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Joined: 21 Oct 2010
Location: Essex
Points: 558 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Karen Quote  Post ReplyReply Direct Link To This Post Posted: 19 Jun 2011 at 9:59am
I am here every day from time to time . If there are any newbies I am here to answer ?'s just like any of the other long time PH'ers. If there was a new post I would be here to answer if I can. At the moment there dont seem to be anyone posting with problems which is good in a way. 
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jet View Drop Down
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Joined: 21 Oct 2010
Location: Reading
Points: 349 		Post Options Post Options   Thanks (0) Thanks(0)   Quote jet Quote  Post ReplyReply Direct Link To This Post Posted: 19 Jun 2011 at 10:42am
I wish we had a l ke button on here!!!! lol.  I agree with Karen I come on here every day at some stage xxx
Had Lupus for at least 27 years diagnosed with secondary PH in 2006
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Kathryn View Drop Down
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Joined: 26 Oct 2010
Location: UK
Points: 145 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Kathryn Quote  Post ReplyReply Direct Link To This Post Posted: 19 Jun 2011 at 11:35am
I check on here everyday too as well as being on facebook, just thought many of us are having a good run at the moment or at least haven't got new problems!
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Annie** View Drop Down
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Joined: 08 Nov 2010
Location: bucks uk
Points: 317 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie** Quote  Post ReplyReply Direct Link To This Post Posted: 20 Jun 2011 at 1:18am

Here goes

 
whenever we get an interesting thread we are told to kerb it in case we worry onlookers who dont even have the condition.  maybe thats why people cant be bothered to put on here things that would actually interest us. 
 
There said it hahahaha
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Miriam View Drop Down
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Joined: 25 Oct 2010
Points: 240 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Miriam Quote  Post ReplyReply Direct Link To This Post Posted: 20 Jun 2011 at 1:59pm
Good for you Annie!   Yep, there;s nothing like having cold water thrown at you!  It is so obvious that we all post less now
Live, Love, Laugh!
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Tracie View Drop Down
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Joined: 14 Oct 2010
Points: 131 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Tracie Quote  Post ReplyReply Direct Link To This Post Posted: 20 Jun 2011 at 3:47pm
Good afternoon....
 
 Well i hope we all feel better for getting that off your chest.....
 
 Firstly i would like to say that this forum is now being used exactly as it should be used and for the purpose that it was designed for...  This is not a social networking site and nor will it ever be. What this site/forum is, is for the support, help, advice and understanding. 
 
  Now i do understand that many of you feel that the moderators maybe a little extreme but to be honest, there has to be a liine and at what is exceptable to some is not to others. Where to draw that line is also not easy.....
 
 I would like to add that this forum is outstanding in what it offers to you the members and those who are just starting there journey and many of you have already stated, look in daily and each and everyone of you are there for each other..We know that if someone had a worry or concern then someone would be here to offer help and support. We achieved that through this forum..... ;)  Simply by having a few ground rules... 
 
 This forum is generally quieter through the summer months, normal or it has beeen for the last 10 years that i been here... people are busy enjoying the sunshine and feeling brighter and weller in the warmer weather.  Winter as always sees more activity here.
 
 Yes many of the members do use face book, but not generally for PH issues, but for social chit chat... Most will return here when in need of info, help, support, understanding and advice.....
 
 Take care
 Tracie
 
 
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Moderator2 View Drop Down
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Joined: 14 Oct 2010
Points: 36 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Moderator2 Quote  Post ReplyReply Direct Link To This Post Posted: 20 Jun 2011 at 4:57pm
Hi Annie
I am sorry that you feel the "interesting" thread are curbed. As moderators we try to take an independent view as to whether the post is within the rules and not likely to cause distress for other readers. A thread is never removed lightly nor without consultation and trust me as moderators we do not always agree.
We hope that we get it right but decisions made will never suit everyone.
I just think everyone is out enjoying the summer and as a general rule PHers tend to fare better in the summer months
 
mod 2
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Moderator4 View Drop Down
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Joined: 14 Oct 2010
Points: 52 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Moderator4 Quote  Post ReplyReply Direct Link To This Post Posted: 20 Jun 2011 at 5:18pm
I've been using this forum for a number of years now and every summer it quietens down. Plus, as Tracie says, the forum remains more on-topic than it used to as we can have the chats on Facebook and stop digressing onto talking about trivialities in the middle of a request for help.

Ps.In case anyone is wondering...the other moderators are not all Tracie
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Aleksandr View Drop Down
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Joined: 21 Oct 2010
Points: 209 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Aleksandr Quote  Post ReplyReply Direct Link To This Post Posted: 20 Jun 2011 at 5:22pm
It's summer...sit online or get out and enjoy life? Decisions, decisons LOL
Simples!
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