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Quiet |
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paulinemjc1 
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Joined: 21 Oct 2010 Location: Shropshire Points: 106 |
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 Topic: QuietPosted: 22 Apr 2012 at 7:05pm |
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If a pity its so quiet in here now that most of us use Facebook instead of the Forum. I hope new members don't think we are a very inactive online community!
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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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Joe - Torquay
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Joined: 21 Oct 2010 Location: Devon Points: 85 |
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Posted: 22 Apr 2012 at 10:36pm |
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Hi Pauline
Like you, I've found that there's been less and less posts on this forum, mainly due to members using facebook as opposed to the PHA forum. Like you too, I hope that our PH family continues to support those newly diagnosed and those who at times get low due to PH symptoms, which we know can be life-threatening at times. I personally don't use facebook, perhaps I'm missing out, but I feel that THIS PH FORUM has given me the support I've needed from my PH friends and also the support I've offered to others when we are at an ebb with this illness, perhaps outcomes may have been so terribly different. Sharing our PH experiences does help put things into perspective, when at times, we feel that our symptoms may taking us down into an abyss, then, we learn from each other - that we are not alone with this condition. Best regards ... Joe. |
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Life is for living - make the most of it, and enjoy it.
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Susanna
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Joined: 25 Oct 2010 Location: Herefordshire Points: 108 |
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Posted: 22 Apr 2012 at 10:50pm |
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This is so strange because I was thinking exactly the same this afternoon! I also personally do not
use facebook either!!!
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Karen
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Joined: 21 Oct 2010 Location: Essex Points: 558 |
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Posted: 22 Apr 2012 at 11:06pm |
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That is what I was trying to get across on the PH site on FACEbook, Its killed the forums here. I feel sorry for the new people that join up here and find nothing is happening. Some of the people like Susanna dont use Facebook.
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joanielg
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Joined: 24 May 2011 Location: Australia Points: 106 |
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Posted: 23 Apr 2012 at 3:37am |
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We find the same here in Australia with our PHA Aus. forums, a lot of our members don't use facebook or know how to. PHA Canada's members forum is used rarely too. It is possibly because of Facebook and the use of the PHA Org. forums. The only thing we do is repeatedly encourage members to do both.
Aussie Joan aka JoanieLG |
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staciep90
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Joined: 22 Apr 2011 Location: Swindon Points: 171 |
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Posted: 23 Apr 2012 at 11:04am |
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I use both but I do make a point of using the forum although I do use the facebook page more often, probably because I can access it everywhere on my phone. I think people probably should use the forum more often though, I do check it everyday though incase someone has posted :o)
xoxo |
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Life is worth the fight :o)
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george
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Joined: 31 Mar 2011 Location: east sussex Points: 22 |
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Posted: 23 Apr 2012 at 11:16am |
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Hello pauline and everybody else im still on here when i can remember my pass word,facebook is easier but not quiet the same hope your all well xx
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"stop the world i want to get off"
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margwxs
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Joined: 21 Oct 2010 Location: Cornwall UK Points: 237 |
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Posted: 23 Apr 2012 at 6:08pm |
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I only found my way into Facebook group, after numerous times trying to use the link on PHA page. However I visit both here and the FB group, as it is thanks to the members here that I learned all I have about PH, and their support has been fantastic, so I will keep on coming here as well, though I too had noticed it was much quieter here.
Take Care all Margaret |
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Music makes the world go round
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AngelAli
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Joined: 17 Dec 2011 Location: Ely Points: 55 |
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Posted: 24 Apr 2012 at 1:41pm |
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I come on here most days, but Facebook has the advantage (or disadvantage) of pushing notifications through.
I have little to add to the threads on either place at the moment as I am way out of my depth & barely even at a stage of acknowledging the problems I am facing.
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Kathryn
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Joined: 26 Oct 2010 Location: UK Points: 145 |
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Posted: 24 Apr 2012 at 4:25pm |
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I visit the forum everyday too as well as using facebook. It was on the forum that I first got help and support from fellow patients and I will always be grateful for that. I think we do need to remember that patients , especially newly diagnosed ones will look here first, even just reading the threads can be useful and reassuring, as I remember well when I first came on this site. I just used to read some of the threads and find out as much as I could about PH from a patients point of view, so it is important that we keep posting on here.
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Carole
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Joined: 26 Aug 2011 Location: Halifax Points: 459 |
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Posted: 25 Apr 2012 at 8:32am |
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How strange that we have all noticed how quiet this site had become. I was getting quite worried about it but hopefully we will get it busy again. Without this forum I think would have gone mad
And I feel I have made some good friends here. Facebook somehow seems more impersonal though I do respond to posts there I never post a new topic, I use here for that. hope this keeps strong for us, we need each other as who else can understand how we feel as our bodies let us down. I think it would be good if family and friends, though very understanding, could walk a few hours in our shoes and see how hard it is to do every day simple tasks. Keep posting everyone , we NEED this site Love Carole
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CA
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linda b
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Joined: 31 Oct 2010 Location: TELFORD SHROPSH Points: 10 |
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Posted: 28 Apr 2012 at 2:53pm |
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Hi all, I havent been on this site for a long while, but when i did want to log in i couldnt, i knew i was putting in the correct info but was locked out. it took me a while to find out who and where i should email to solve the problem, it is sorted now with new password set up for me,
Maybe that is why it is so quiet, as unless you come on here regularly you get locked out, so a lot of folk will just give up and not bother coming back as they go instead to facebook and twitter. It is shame really because after going through some of the posts i realize that this site does still help a lot of people, especially newbies who dont know who to turn to for information, I remember the great help and advice i got from people who i cannot find on here anymore, a few have sadly died, and others prefer to stay friends via social networks so they can talk about other topics, I agree with Carole and hope this site will always be available, to people looking for a shoulder to cry on or for informative discussions and advice. I for one am glad i took the time to come back again.  linda b |
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linda b
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Karen
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Joined: 21 Oct 2010 Location: Essex Points: 558 |
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Posted: 28 Apr 2012 at 6:23pm |
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Linda the reason being is that if you have not been on here for a long while is cos this site was upgraded. There we all had to re register and get new p/words. It is to stop the illegal postings of certain companies and people. I will always come on here like you cos this is where I got and still do get alot of support from people. I think FB is ok for chatting and general stuff but PH is here.
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Ken\'s Barbie
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Joined: 30 Apr 2012 Location: West Lancs Points: 178 |
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Posted: 30 Apr 2012 at 2:24pm |
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I have an fb account, but TBH I can't find anything about the UK branch. It only seems to bring up the American ones
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Good humoured positivity is far better than grumpy negativity
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Ken\'s Barbie
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Joined: 30 Apr 2012 Location: West Lancs Points: 178 |
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Posted: 30 Apr 2012 at 2:28pm |
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My opinion - I feel that if you have ph then this is surely the best place to get information. This is more private and I find that only friends will get the notifications. There re too many weird people on fb as a whole
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Good humoured positivity is far better than grumpy negativity
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joanielg
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Joined: 24 May 2011 Location: Australia Points: 106 |
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Posted: 01 May 2012 at 3:22am |
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I use both but recommend the forums. Our Aussie forums are very secure and don't have any medical staff accessing them unless they are a PH patient or carer and we make it clear that they are not a clinician but a sufferer. It has worked well for 7 years. Clinicians have their own locked section that patients/carers cannot access. Facebook is handy for the quick comment or question but it is very public and open to abuse so I never ask anything there. It's more social connections I think rather than in depth discussion.
Aussie Joan  |
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AngelAli
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Joined: 17 Dec 2011 Location: Ely Points: 55 |
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Posted: 01 May 2012 at 10:59am |
I question whether or not this is more private as the forum is publicly viewable and is indexed by search engines. Perhaps we do not use real names, but there can be many clues in what people post. The FB group is a closed group which, in theory at least offers a level of protection to group members. FB also has FB has rudimentary control and allows people to be reported for their actions. FB has also gone to some trouble recently to evict false accounts recently.
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Ken\'s Barbie wrote: