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Anna 
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Joined: 12 Jan 2011 Location: Welshpool Points: 32 |
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 Topic: facebookPosted: 23 Jun 2011 at 12:05pm |
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Hear hear!
I think we all know that if we need help, are uncertain about something, or generally need a bit of support, then the forum is here to serve that purpose. Likewise if we can offer support, help or information to others that may be helpful.
Otherwise we get on with life, and do what we can do knowing that the forum is always there - a bit like a comfort blanket!
Anna x
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Still fighting, still positive...
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JAldred
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Joined: 02 Nov 2010 Location: North Yorkshire Points: 104 |
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Posted: 22 Jun 2011 at 11:07pm |
I suspected that you were probably trying to protect the vulnerable. I asked the question because I wasn't sure if it was advisory or mandatory. I post mainly on technical news groups / forums where the contributors are largely IT professionals and enthusiasts. The only problem I used to have was spam, as I have been using the same e-mail address for 14 years. I guess it must be on every spammers list on the planet by now! However with good ISP filtering, combined with my own systems it is no longer a problem. Note to Aleksandr: Not seen a single offer of Sildenafil for months now. What a shame  . Wish I had all these bank accounts that the phishers seem to think I have access to.
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John
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Aleksandr
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Joined: 21 Oct 2010 Points: 209 |
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Posted: 22 Jun 2011 at 10:14pm |
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Other good reasons that email addresses are not displayed or are disguised by using AT and DOT instead of @ and . is to avoid web-crawlers. This site has a lot of posts with the words Sildenafil and Viagra or Revatio in them. Post your email address on here and await the deluge of spam/porn/scam links. I think the PHA would like to reduce the incidence of that sort of thing.
More and more employers search the internet for prospective or current employees too. Not all people want everything to be known by everybody. Ps.There are six mods |
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Simples!
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Tracie
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Joined: 14 Oct 2010 Points: 131 |
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Posted: 22 Jun 2011 at 9:51pm |
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Hello John, If you read the terms again it actually says, please do not post personal details.... It does not say you are not allowed, it is more of an advisery then a term.... Purely about protecting our members and safety... Recently we had an incident on here that involved someone wanting to speak to our young members!! Fortunatly this was dealt with and turned out to be very innocent as far as we can tell..But could of been different if personal details had been visable and not an innocent request. Also many members post about dates and times of hospital visits and stays, which announces that their home is probably empty also.... Real names and IP address can help anyone track someone down if you are mad enough. Most internet savvy people post as little identifying stuff as possible especially on forums yet others will post stuff that they would not be happy giving to a stranger in real life. So the PHA recommend that members do not post personal details for their own safety, and will not be held responsible for those who choose to ignore this request/advice. Hope this answered your query, Take care Tracie |
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amandahale
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Joined: 24 Oct 2010 Points: 35 |
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Posted: 22 Jun 2011 at 8:34pm |
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Online everytime,lol I am addicted to it!!!xx
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DX with IPAH 2008, VSD repair age 4.
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JAldred
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Joined: 02 Nov 2010 Location: North Yorkshire Points: 104 |
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Posted: 22 Jun 2011 at 8:11pm |
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I see that there are 3 moderators viewing this thread.
Perhaps one of you could answer a query that I have. I was re-reading the Terms and Conditions, and noticed the piece about Personal Details. I've been posting on Usenet for some 15 years now. My real name and e-mail address always appear in the headers for all to see. Other users in web based forums such as Microsoft TechNet often display their full name and contact details in their sig file. What is the reason that you will not permit that on this forum? |
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John
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paulinemjc1
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Joined: 21 Oct 2010 Location: Shropshire Points: 106 |
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Posted: 21 Jun 2011 at 6:39am |
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You can't play games on here and some of us like to play a game very occassionally
so we use Facebook. I too check in here every day.
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Mum of 7. Nick, age 23, has Downs syndrome, PH, Eisenmengers, tube fed, other complex medical needs.
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Annie**
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Joined: 08 Nov 2010 Location: bucks uk Points: 317 |
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Posted: 20 Jun 2011 at 11:59pm |
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Firstly may i apologise if I upset any moderators as this was not my intension at all and I am truely sorry if I gave the wrong impression. When you have to pull threads you have to pull them and I know you think long and hard about doing so. when you do pull a thread or an entry on a thread you do so for very good reasons.
Actually I was refering to some members who always seem to comment in the negative when some threads get expicit. My intention was not to insult but rather to explain why the number of posts - even during the winter - have been low.
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EM79
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Joined: 31 Jan 2011 Points: 35 |
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Posted: 20 Jun 2011 at 10:28pm |
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Alot of us are on facebook including myself i come here now and then and still post from sometimes x
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njm
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Joined: 21 Oct 2010 Location: Fife, Scotland Points: 55 |
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Posted: 20 Jun 2011 at 9:28pm |
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I use both sites - just not got a lot to post on here just now.
Do check in at least once a week - used to be daily - but since I have my mother-in-law (who has dementia) stying with me at the moment soemtimes don't seem to be enough hours in the day!!!
Hope everyone is well,
Take care, Nic xx
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Miriam
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Joined: 25 Oct 2010 Points: 240 |
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Posted: 20 Jun 2011 at 7:18pm |
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Agree with Tracie, except for the fact that it was not the ground rules that made this site the success it is. Hardly!
Speaking for myself, it actually was the general chit chat, interaction of Phers, getting to know each other through the chit chat and meeting up at conferences to put faces to posts, that made this forum the success it is.
There were a number of times that moderators had their say and I had to think long and hard about whether I wanted to continue posting here. But we are a community and we care about each other and it is to the credit of trustees that we're still tootling along helping, supporting and cheering each other on.
And the most memorable thread on this Forum was???
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Live, Love, Laugh!
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Aleksandr
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Joined: 21 Oct 2010 Points: 209 |
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Posted: 20 Jun 2011 at 5:22pm |
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It's summer...sit online or get out and enjoy life? Decisions, decisons
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Simples!
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Moderator4
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Joined: 14 Oct 2010 Points: 52 |
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Posted: 20 Jun 2011 at 5:18pm |
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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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Moderator2
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Joined: 14 Oct 2010 Points: 36 |
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Posted: 20 Jun 2011 at 4:57pm |
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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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Tracie
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Joined: 14 Oct 2010 Points: 131 |
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Posted: 20 Jun 2011 at 3:47pm |
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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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Miriam
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Joined: 25 Oct 2010 Points: 240 |
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Posted: 20 Jun 2011 at 1:59pm |
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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
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Live, Love, Laugh!
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Annie**
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Joined: 08 Nov 2010 Location: bucks uk Points: 317 |
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Posted: 20 Jun 2011 at 1:18am |
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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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Kathryn
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Joined: 26 Oct 2010 Location: UK Points: 145 |
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Posted: 19 Jun 2011 at 11:35am |
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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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jet
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Joined: 21 Oct 2010 Location: Reading Points: 349 |
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Posted: 19 Jun 2011 at 10:42am |
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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
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Had Lupus for at least 27 years diagnosed with secondary PH in 2006
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Karen
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Joined: 21 Oct 2010 Location: Essex Points: 558 |
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Posted: 19 Jun 2011 at 9:59am |
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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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Tracie wrote: