British Lung Foundation
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The forum has changed

Have not been on here for months up until about 10 day ago and I feel the forum has changed miss a lot of the jokes and peoples conversion.

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62 Replies
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People still chat and laugh CEC but maybe we are still recovering from Christmas/New Year plus some are suffering health wise.

The site is changing all the time as new people join and some leave for various reasons. It’s all good though and still caring and helpful.

Stay in touch if you can, it’s good to see you. Xxxxx

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It has changed CEC47 and imo much for the better. The humour is gentler and less dominating now. The previous jokes, exchanges etc were fine but since they have become less dominant we have far far more new members coming on with questions about their symptoms, diagnoses etc. Which is what the forum should primarily be about. If there is too much of the socialising, it may feel less welcoming to newbies - maybe a bit cliquey? I think the balance right now between the social and the clinical is good. If you hang around, which I hope you do, you will soon fit back in.

I think some members left to form a Facebook page so the conversation you mention is probably happening there. Alongside the jokes etc, there was quite often bad feeling, which hardly ever happens now. So you take your pick. Welcome back :)

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Laughter is lifes best medicine so said Robin Williams from Patch Adams

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Nice to see you CEC, Agree wholeheartedly with 02 - definitely a much better place to be - a nice mixture of posts and so much less aggro and more welcoming to newbies. It is largely, I believe, down to our voluteer moderators, who do a thankless job very well.

cx

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I agree about the mods' work cof, but fair does, some of it must be down to us as well :D

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😀

xx

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I personally didn't notice agro or domination by any particular group and i think the site has always been welcoming to new members,so maybe i haven't noticed the renaissance.i think Sassy sums it up very well.............skis and a non social media scruffy cat x

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Probably because at the time you joined skis and scruffy the site was as it is now. As you say no aggro or domination and always welcoming to new members, but believe me it wasn't always that way!

love cx

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I never noticed any domination either just good friendly people who enjoyed each other’s company and stories

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I don't know when you joined Sjm, but there were far less new members asking for help a year or so ago.

Ok, edit: just checked and, like skischool, you joined in 2017. What we are talking about happened way before then. The last year has been lovely, like you say, good friendly people etc etc.

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I joined in 2016 due to HU,s system messing up I had to open another account and HU deleted the original account so I’ve been here for a couple of years, the new account was opened in 2017 just to clarify.

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Ok, thanks for that Sjm - even though my view is different to yours, I understand where you are coming from now.

That’s all I can ask for o2 we shall agree to disagree on this occasion.Enjoy your night.

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Glad to hear it Sjm. It just shows what a great job the moderators have done in 2017.

cx

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Come on skischool - seems like you and scruffy joined in April 2017. If this is so, then you can have no idea how it was historically. You were part of the renaissance, a very welcome part too.

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Charm will get you everywhere my dear O2,i am usually referred to as the Placental expulsion or runt of the litter at best,xx

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Crikey . . . seriously skis? Placental expulsion is a bit heavy lol. I could never think of you in that way :)

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When I joined there were many other people who commented and shared their experiences and lives and were very supportive of me, those people have now left and I feel this forum has not been the same since.

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Sorry you feel that way Sjm. But there were hardly any new people coming on with their concerns and now there are loads. Swings and roundabouts I guess.

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Funnily enough Hidden I remember your first posts because I really felt for you. I just checked and all the people who replied to those posts are still members, except one who I remember did decide to leave. But all the rest of us I'm sure are here for you any time you need our support, you've only to say the word.

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Thank you Hanne 62 I appreciate the offer. [edited]

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Sjm2121, if you witness anyone being bullied, then do report it immediately. I have to say I haven't seen anything like that in a long, long time.

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Some of your own moderators have two accounts Toci so I could be getting asked questions by a moderator in an official capacity then be in a conversation with them not knowing that it’s the same person.

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I can't see how that would matter at all. The mods are ill as well, you know. Would there be a difference in what you would say depending on who you were talking to? Surely the point is we support each other at all times?

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I’m all for support Toci for anyone who needs it, I’m not allowed to operate two accounts why should that be any different for anyone else, does that mean that the rules do not apply to everyone?Do they only apply to us mere members?Im just asking as that seems to be what is being said here.I appreciate that moderators May be I’ll also and I wish them the best with their health issues.

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Why on Earth would you want to run two accounts? I can see why a moderator would have to but why would you want to?

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I’m just pointing out that there is a double standard which is unfair and I find it hard to understand how moderators can be impartial when they have a double identity,

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Anyway, they are doing a great job as far as I am concerned. :)

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Oh dear, I'm really sorry that's been your experience. There 's so much genuine concern & kindness here, indeed what's the point in being anything else, we're all in this together aren't we? This is a difficult time of year, I think lots of us feel more depressed and less optimistic. It's so hard to get out & about in this cold & dreary weather and we're all battling the bugs. Please keep posting Hidden, especially if you're having a hard time.

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Thank you Hanne2 for jogging my aged memory ..yes some of us are still here,sadly others have left for reasons known only to themselves...but after reading the post and subsequent replies..are we not ALL forgetting the reason we came here

We ALL have lung disease or are carers for loved ones who have this terrible burden. We need to draw on the support of all members while desperately seeking help and information about our own health issues. I read with some distaste the word "Bully"

I pray that this is incorrect, as this type of behavior is the last thing anyone on this site needs.

Like many others I visit the site daily but do not comment, unless I can give some positive input,

Has HU changed....arguably yes, as I believe we have become more clinical...It is all about the disease...but have we forgotten the human factor?

If I may "pinch" the words of Robin Williams (Patch Adams) "If you treat the disease you will win some of the time...But if you treat the patient you will win every time...no matter what the outcome."

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Snoopy I do love that comment and oh so true, healing only can start with acceptance. If you stress about things you have no control over it only gives your illness power. Relax, breathe and think of all you have not what you wish you had.

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I too was new Sjm not only learning about my COPD but the language difference listening and learning and the patience from all the good people. I am still learning about my disease which is a positive.

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Great to see you back on here Bandit..

Hope the weather is going to improve in Canada...must be freezing for you...stay warm.

Oh by the way..due to a muck up by me i cancelled my account here...was known as Burraboy, Just in case you are wondering who I am...you remember?? from "Down Under"

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could never forget a mate, good to see you

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I’m very new to this forum as I was told I had bronchiectasis in December.

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Welcome Matilda :)

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Welcome. x

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Toci I must ask because I've not seen a volunteer tag, since the mods are volunteers does that mean you are now a mod? I noticed you said you left and came back and now as a volunteer or is that another capacity of HU?

Hi, Bandit. I have a volunteer tag because I am a volunteer (not a moderator, they have an 'Administrator' tag). There are three of us volunteers and we are helping a little because the forum is getting so big, with so many new people joining, and it's good to say hello and help them find where things are and how they work. It also gives me the opportunity of 'giving back' a little because I got so much from this site when I first came here, before this forum was actually started. There was a previous HU forum and before that there was a BLF forum. Things move on. I left because of all the arguing on here about five years ago and the little cliques which formed. Then rejoined because I missed some members very much, many of whom are no longer with us.

As I said, that was nearly 5 years ago and it is so much better here now. :)

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Comments removed by administrator.

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Welcome to the site Matilda...sorry you needed to find us but glad that you did...please remember we are all sufferers of some sort...we can laugh,cry and shed stories and our experiences on this journey, with you, but, for any medical advise you need to consult with your doctor. Hope you find friendship and good company here.

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My word you are very new Matilda_1922 . I hope you're going to enjoy the site. There are quite a few members who have bronchiectasis and I know they'll be happy to help you with any questions. Nice to meet you, Sheila x

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Just want to nip on and say thank you to everyone who is a member on here, whether a regular contributor or not, you are all very much appreciated and welcome on here!

And thank you also to our wonderful volunteer moderators who dedicate a lot of time and effort to helping out on here and do a fantastic job!

Ben

BLF admin

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Yes it’s important to remember our moderators are volunteers who give up their time to keep the forum a welcoming, safe and respectful place for all. There was a time when they were subjected to a lot of criticism and even abuse, merely for enforcing HU & BLF guidelines about use of the forum, but thankfully we seem to have got past that now

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I must admit I miss some of my old friends . I still read stories on Ipernity .

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So do I knitter so many people are missed.

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It can be really upsetting when someone passes away. I am sure we all miss old friends. Thankfully other members are still with us and we have their posts to look forward to.

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knitter your friends will never leave you and are always keeping their eye on you.

Hope you are doing well my friend?

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Go to ipernity.com and type Hedgewitch in the search box. All her stuff should come up.

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I have been here since the Ark landed! Or it feels like it at times. This is my second membership, because I left due to the horrid arguments and bullying that developed on here. Thankfully, that is all in the past and it is good that newer joiners are not even aware of that time. It shows how well we have moved on to the great forum we have now. We are growing so much. Has anyone else noticed we have nearly 30,000 members now? I remember that we only had around 13,000 towards the end of 2015 when the volunteer administrators were recruited to help, so they must be doing something right! :) Add in our fantastic members and you see why this is such a great place to come for support.

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Hear hear Toci and a huge thank you xxx

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Seconded by me Pen, well said xx

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Well I got people talking, with this post didn't I! This is want I missed.

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So sorry to read you’ve been having a hard time lately,I truly hope it improves for you soon.Take care.

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Thank you, hopefully coming out the other side.

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I’m glad as you sounded like you were struggling and I know it’s not nice feeling I’ll and low.All the best

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Thougt I would drop in and wish you all a happy new year albeit belated. Love Pergola. Recognise some familiar names - keep well as well as you can. X

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I think it's a lovely forum. 30,000 people! From all over the world, all bringing their different experiences of lung illness, yet 99% of the time being kind, supportive & respectful to each other! What's not to like? The MOST important thing is that those who are newly diagnosed, probably anxious or frightened and reaching out for support, get it here, and that support is ongoing for us all as our conditions change and get more challenging. The facebook one is for COPD, but many of us don't have that, or aren't facebookers.

We don't all always get it right (well, some probably do, I'm speaking for myself here :D ) but often that's because we're ill, tired and/or on medications with horrible side effects, which make us ratty & irritable (prednisone being a prime example.) I've written hastily before now & then deleted (or been edited!) but so what, just move on.

The forum is what we make it, so if you want more chat or jokes CEC47, just bring it on :)

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Hi I really miss some of the good people who left and think there is less humour now. It did get a bit much at times but it was more fun. Sometimes laughing is all we can do isn't it? x

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Hello CEC47,

You had a lot of replies to your question!

The forum has changed, that’s for sure. Maybe it’s too big now. I know that there are at least two small groups which have separated from this one. Maybe it’s no longer a place where people want to come when they’re feeling ill.

I notice that no-one’s asked how you have been while you’ve been away.

I hope you’re ok. It’s nice to see you again. Take care of yourself. xxx

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I suspect that's only because CEC47 hasn't mentioned their previous name. That's fine, no problem, but it's hard to ask after someone, or say it's nice to see them again, if you don't know who you're talking to.

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Hi folks,

This has been a good discussion, but as we've veered off away from the main focus of the forum, we're locking this post to any further replies.

Thanks for your contributions.

Regards,

Ben

BLF Admin

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