|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
|
Dear All It is with some sadness that I type my last forum post. Over the years the Forum has been a great place for making new friends, learning about other people’s experiences of living with a chronic disease and sharing my own knowledge gained from personal experience of living with long term RA. There was a time, going back two or three years, when the Forum was always a hive of activity; buzzing with a wealth of up to date information and shared experiences. Events dictated that such equilibrium could not continue and members were forced to leave after significant discord caused at the outset by just one member. Daily visits had recorded as many as 20+ members online at any one time. A community of shared problems; one of honest altruism and the need to care about our fellow RA companions. In my opinion, and as I have said before, the Forum lost its way with the introduction of the free Health Unlocked site. As a blogging site, with limited access to those who applied to blog on it, it worked well. Once opened to the general public, however, it detracted from what I believed to be its original purpose and offered no encouragement for those using the site to join NRAS at a cost of £25. Why would you bother? I guess, like many small businesses, NRAS is suffering the same Economic downturn problems. However, with a membership of about 4,000, against a potential of almost 690,000, the problem seems to be much more than this. Awareness of RA and increased membership growth is not consistent with the upward trend of more prevalent diagnosis. Who knows why this is the case? It is certainly one for addressing in the very near future if the company is to survive. For me the Forum has run its course. It has little of worth to offer anyone that can’t be found from other resources including the NRAS Helpline. So, Forum and its remaining friends, it is farewell from me. May you each continue in good health with only the minimum of problems coming your way. Remember, you have Rheumatoid, even at the worst times it is NOT insurmountable despite what you might think (and yes, I’ve been there and feel well qualified to say this!). My best regards Lyn x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
|
Lyn. I am so very sad to read your post. As a relatively new member I'm not really aware of the issues that you mention around the forum losing it's way. I have been on the health unlocked site and it's quite good for people who are not diagnosed yet but suspect they have RA. I went on it a few times when I knew I was ill with an autoimmune arthritis condition but the consultant wasn't sure if it was lupus, RA or something else. At that point it didn't seem worth actually joining NRAS without a definite diagnosis. Once I had my diagnosis however joining up and using the forum has been a lifeline for me. This is particularly true of when I was first diagnosed and was terribly frightened. On the forum I've found that answers to questions have been answered more personally by people that I feel I almost know. It has been a much more supportive experience than simply using health unlocked.
I totally respect your decision but I do want to say that I will miss your posts terribly. I could always rely on you to give an honest answer even if it was a difficult one. You were never afraid to go against the grain and give your honest opinion on things. I will also miss your wisdom on matters of fact as you often taught me things I didn't know and were very good at dispelling common myths about RA. I'll also miss hearing how you are getting on with your current health difficulties. You have been an inspiration to me in the way you have bravely tackled everything RA has thrown at you. Secretly I'm hoping you'll change your mind but I realise that I'm probably going to be disappointed here.
Thank you for everything. You've made such a positive difference to my experience of RA and have helped me tremendously in this difficult first year. At one point I was having counselling for depression and thought I was falling apart emotionally and your replies helped me to pull myself together again and get on with life and with fighting RA. So thank you Lyn, good luck with everything, best wishes for your health, lots of love from Naomi. X
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 561
|
Lyn I'm very sad to hear this , you are an inspiration to me as you have many different health issues and never seem to get depressed and are always there to give good advise to others , I agree the forum isn't what it use to be and I miss old members too .
Like Naomi I hope you will chage your mind , the forum won't be the same with out you . Thanks for all the advise youve given me , wishing you good health , lots of love Sophie x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 6/18/2010 Posts: 351 Location: Herne Bay Kent
|
Lyn I am so sorry to hear your news. I agree with all that his been said, you and your wit and invaluable honest advice will be sorely missed. I know you have had a really difficult year and totally respect your decision. Wishing you all the best despite this horrid disease, thanks for all the advice. Sue  
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 62
|
Hi
I've been a member since diagnosis in 2007. At the beginning the forum was a lifeline to me and I am still grateful for that early help. I understand what Lyn is saying as I've also noted a great change since the problems. However, the new members who have joined since those times are finding encouragement and support from each other and I hope they will continue to do so. My best wishes to you all.
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
|
 Sorry you feel that way Lyn, I wish you all the very best for the future xxx Hi Brendab I'm being nosey, what do you mean by problems on the forum? Hope you don't mind me asking. Jane Xxx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
|
Dear Lyn
I write this post with much sadness this morning. I just want to say thank you for all the unstinting support you have given this forum over the years and you will be sorely missed by us all. With your great knowledge and understanding of RA, you have been a true inspiration and enabled many of us to move forward and not remain in such a dark place, and only those with the illness can truly understand. Your words of wisdom, positive approach and sense of humor with always be treasured and remembered with fondness.
With love Julia xx
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 62
|
Hi Jane
I can honestly say I don't know what the problem was. I must have been away at the time and just came in at the end of whatever had been going on. There had obviously been some upset which made me feel very uncomfortable. I hate controversy of any kind and always turn off the tv if a debate gets heavy. This forum was amazing for me after I was diagnosed and I feel all you new members can support each other the way I was supported. In turn you can teach the future members from your experiences.
Love Brenda
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
|
Hi Lyn,
I know exactly what you mean, for the same reasons I will not be renewing my membership when it runs out next month.
You will be missed on the forum, we have had some good times on here.
Love Doreen xx
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
|
Doreen, i will be so sorry to see you go too. Like Lyn you have been such a support and wealth of knowledge on here. I honestly don't know what the problems have been on the forum and just wasn't aware of them. Maybe they were before my time. All I know is that I feel quite bereft at the thought of losing two valuable members.  If there is something that can be done to resolve whatever the issue is then let's do it. I would find it very hard to bear if other members follow suit. I feel quite in the dark about this whole issue. I wish I knew what it was all about and that we could discuss whatever it is openly and come to an amicable resolution without people leaving, even if it left people agreeing to disagree on whatever it is. I respect people's right to vote with their feet but it's very confusing for those of us who don't know what this is about. Whatever it is I wish both of you well. I think I know you well enough from your posts to know that you wouldn't make these decisions lightly. From a very sad and confused member, Naomi.
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
|
Doreen, I'd love to meet up on fb. I don't know your surname. Please could you send me a friend request. Naomi Griffiths. My fb photo is the same as the one on here so I should be easy to find. Thanks so much.
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
|
I found you, Naomi and sent a friend request.
Doreen xx
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
|
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
|
hi Lyn,
am really saddened to hear you will be leaving ( fully understand why ) .. i joined when the forum was a thriving community and you amongst many others were there for me when i was in a dark place.
i will miss Doreen as well, as i have followed her path with my meds ending up on Humira.
but to be honest i don't really contribute to the Forum like i used to .. i read it more these days, as i feel i don't have the knowledge for many of the questions as i have progressed fairly straightforwardly with each drug i started on.
really sorry to hear about the angst at the last meet,
i would also like to thank you for all your Charity fund raising Lyn, RAlph RAbbit sits proudly amongst my teddy bears still .. lol,
i'm not sure if you still have my email in your address book but if you ever fancy saying hello please feel free.
i do agree that it's great the newer Members are getting support from each other .. i know how important it was for me when i first posted.
take good care of yourself Lyn and i hope that things start looking up for you.
and all the best to you Doreen and for all your support.
Love and Best Wishes,
Suzanne x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
|
lyn,i have renewed this year but as i am still relatively new and have no idea what is in the past i will continue on the forum,i cant really add any more to this but i thank you for all the advice and help i have had from you,i wish all the people who leave this time all the best,good health and take care,dorothy
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 1/21/2012 Posts: 388 Location: Powys
|
Hi, I read these posts through last night before bed and it made me feel so sad. I have only been using the forum for a relatively short time but have found it fun, beneficial and informative. I feel that I have gained many new friends and like Naomi feel sad, puzzled and bewildered that it can have happened.
I would like, if possible, to keep in touch with both you, Lyn and Doreen. I have enjoyed talking to you both on here and am very grateful for your support and know that you will both be greatly missed. You have such a wealth of knowledge between you, have you both been on here since the forum first began? you both seem so much part of it. It won't be the same.
I did try to send you a friend request a couple of weeks ago Doreen but must have sent it somewhere else, still not too good at all this, will try again but I am Zena Watkin.
I am going away for a few days, first time in three years that I have felt comfortable doing so, but will get back on here soon.
Best wishes to you both, luv Zena xxx.
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
|
I'll look for you on facebook Zena and send a request. You can get Lyn on there too.
Enjoy your holiday !
Love Doreen xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 9/30/2010 Posts: 55 Location: St. George, Bristol
|
Hi Dorat I also am not aware of the problems and although I have not posted that many times have always found your replies rewarding. I too will be very sorry to lose contact. I am on FB - Rose Pursey and would love to keep in touch. Take care xx Rosie
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 346
|
Sorry to hear that you are leaving the forum Lyn and Doreen.
I have not been on here all summer due to things going on at home and have only just logged on again today.
The forum has been a place of great support to me in the past due to you both and others on here.
I wish you both all the best for the future.
Bevxx
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
|
What on earth was wrong with my post that it got deleted due to "inappropriate content"?  Aren't the moderators supposed to let us know if one of our posts is being removed? I didn't swear or write porn or break any forum rules....honest! All I said was that you are all doing a really good job of supporting each other on here, and to look me up on facebook if you want. I did say .now I remember, that there are reasons we can't go into on here, but that's not breaking any rules! Doreen xx
|
|
|
|
|
|
|
