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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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LOVING THE SWIMMING, jACKIE - sorry about the caps!
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Rank: Advanced Member  Groups: Registered
Joined: 5/7/2012 Posts: 149 Location: S E London
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I use both HU and this forum and enjoy both of them. I don't think one detracts from the other but they are definitely different.
The HU forum seems to be a lot more chattier with this forum being more informative (just my opinion).
I'm sure people will start posting again after the hols.
Mary
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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smith-j wrote:Sorry distracted by the swimming  Second to last paragraph should have read "it was only by chance that I found out about NRAS on the internet"............... So distracted by possible medals It's not the medals that are distracting me!!!  YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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See I did not post again. I had recorded Tom Daley and the diving .......... say no more. (In my defence my maiden name was Daly). Such a shame they lost out.
xx
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Rank: Advanced Member  Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi All - I agree with Lyn - I haven't been here long but there's definitely a lot less posting in the past few weeks, with few new topics, but still quite a lot of views. As a new member I don't like to start many new threads mainly because I haven't had any big problems so far, but I find the forum has been so helpful and encouraging and I like to participate by commenting whenever I can. I try to look in once a day and just read the active threads - it's important to note that comments often wander (very interestingly) away from the initial heading so I usually read whatever is new since my last visit and post something to show support! This forum has been of special value to me simply because we all share the same diagnosis, so everyone's experiences have some relevance to me personally, and I find the comments very moving, and a good balance between the moans and groans; the informative and even the fun, silly stuff! I realise that we can't predict when someone has an urgent request or new diagnosis, so it's important to drop by frequently. But ( and it's a big BUT), a forum like this will only remain valid and interesting if lots of people participate - if there are no new topics then eventually we'll all get bored and go elsewhere, and then who will support new members or indeed promote the work of the NRAS! I echo Jane's comments camping dude wrote:
Shame that more people don't feel they want to join in, maybe they prefer just to read.
If you are the person that just reads the posts, type something back say hello!!!
And if the absence of posts is because you're all feeling really well, then please say that too. I'm scared witless at times when I try to think ahead and plan the future, so as a newbie it would be reassuring to know that RA isn't always bad for everyone and there is always hope. Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Thank you everyone for posting your thoughts and comments on this. All are very valid observations and it's always good to know the thoughts of others. It is holiday time, the Olympics are on so to be expected that numbers of posters are less than in the winter months. It does seem to happen each 'summer' (I use the term loosely!!) and things improve throughout the autumn. However, as Tracey points out numbers of posters over recent months has dropped, so it's not just a summer thing this time, it seems. Also another valid point is that many 'viewers' gain support simply from reading the posts of others. Some would not want to join in because it's just not 'their thing'. It is important, I believe, to keep posts fresh and interesting to encourage others to join in and become involved. This needs people to post as Sylvia points out! As time has gone on and I've seen the decline of the Forum and the increased usage of HU, it has become eminently clear that the forum is always going to flounder in the face of 'free' competition. Few are going to pay a subscription for a magazine and a forum when the latter is freely available through HU. There really is little incentive in being an NRAS member when the website, publications, helpline and HU are free to all! Of course, we can be altruistic and say members are subscribing for the good of the NRAS community as a whole but in the present economic climate I'm not sure I can convince myself that people actually feel this way! I'm a great believer in information being available to all but I really think, in this case, the introduction of HU as part of the NRAS community is a shot in the foot when such a facility is already available as part of the website and a benefit to members. I'm sorrry Mary but I do think HU detracts from the Forum by virtue of the fact it's free. Why would anyone pay membership to use a forum when they can get it free? It was originally advertised as a blog site and I believed that was how it would stay. I was an original blogger on HU and during the time I was on there received the most hateful mail I have had in my life. Anyone can sign up regardless of whether or not they have RA and it's a target for those in our society who have nothing better to do or are lonely and looking for company. I was on the receiving end of much unpleasantness and threats. I closed my account. Jackie, as always, has made very useful comments but again are we really fighting a losing battle whilst HU remains part of the NRAS community? I don't know but a good debate nonetheless! Lyn x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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100% with you on this one Lyn. I will go further and suggest that (in my opinion only) HU actively works against people joining NRAS.
You just put it so much better than I do! I remember very clearly making my thoughts on this known to NRAS a good while ago, but none of them were taken on board - do I remember you doing the same? xxx
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Rank: Advanced Member
Groups: Registered
Joined: 10/21/2010
Posts: 178
Location: aberdeen
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Hello all
I'd like to add my thoughts.
There are some fantastic contributors/discussions both here and on the HU site though I must admit after my initial shock at diagnosis and the need to learn all I could, whilst I still check in everyday on both, I do not participate as much as I did and there are several reasons for this.
I have only had to have methotrexate for treatment and when it comes to questions of biologics and longer term diagnoses I do not feel qualified to participate on many topics but am eternally grateful to all those who made me welcome, gave reassurances and advice.
I am invariably moved by the plight of many of our friends on here, and whilst I can empathise, I cannot always comfortably find the words of support to express my feelings.
Over the past few months my computer has identified malware on some of the posts, so I have not gone in to follow the discussion or perhaps comment upon, though with hindsight I should perhaps have alerted NRAS web support - my mistake.
Email and chatrooms are a notoriously difficult medium through which to communicate with people that you do not know personally. I naively imagine that everybody will rub along nicely because we share a common bond but I have seen a couple of bust ups on the HU site and felt quite unhappy that people can so misconstrue the intentions of another.
Has the membership of NRAS fallen? - I daren't go an look at the list because I will probably lose this post - the last time I looked there were hundreds of members and I hope that most will be getting the benefit of the forum even though they may not be actively participating at this particular time - I believe membership means different things to different people at different times.
.....eve x
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Rank: Advanced Member Groups: Registered
Joined: 5/7/2012 Posts: 149 Location: S E London
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Hi all,
I found the HU site through the NRAS site, so assumed (wrongly) that you had to be a paid member of the NRAS to use the HU forum.
I did think it was strange to have the two different forums on the NRAS site but assumed they worked side by side.
I agree Lynn, not many people will pay for something that they can get for free.
I certainly wouldn't cancel my membership as I realise the advise given on this forum is invaluable.
Like Eve, I read all the posts on here most days, but only being recently diagnosed I don't have the experience or knowledge to comment on many of the posts. I do like to join in with the chit chat etc.
Hoping for more members and more people posting soon.
Mary
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi everyone I am afraid that I am one of the members who rarely gets on here now. It has nothing to do with the H U site, as I dont go there either, and was unaware of the problems going on there. Lyn, especially you having threats made, its unbelievable!! I'm so sorry to hear that. Personally, its just that I childmind four days a week, and am exhausted on the evening and in bed by 9 after the children go home around 6 I am on here now as I am off this week!!!! yay!!! I have found this site invaluable, when I was first diagnosed people such as Lyn, Jean, Dorothy etc were here to advise and support me, and I am eternally grateful for that. Although I still need the support, I am rarely able to be here. It doesnt mean I dont want to be, or dont need to be. I do use f book, and occassionally go on rheum at the inn, but not often. I just want to say, this site, and these forums are invaluable, I dont believe NRAS is advertised well enough. I was lucky my consultant advised me to join, and there were posters around, but none mention the forums and how they can help you. A new campaign is needed to encourage more people to join. H U cant take the place of these forums, and it needs to be stressed how invaluable these are  BARBARA
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Rank: Administration
Groups: Registered, Administrators
Joined: 3/20/2012
Posts: 87
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NRAS Myth Busters! Dear all, We are delighted that most of our members find the Members’ Forum incredibly beneficial however, I also feel that there are some myths flying about regarding Health Unlocked and NRAS Membership that need to be looked at so I hope you don’t mind me addressing them below: • Health Unlocked is an external platform with over 75 communities which cover a range of conditions and was not set up by NRAS. We had the choice of making a Rheumatoid Arthritis community with our branding/links to our website etc OR wait for another charity or group to take up the opportunity. • “Different strokes for different ‘folk” - As a forward thinking charity, we want to reach as many people as possible and understand that each platform has its own audience, whether it be social media (Twitter, Facebook), other forums ( Patients like me, Health Unlocked, Rheum at the Inn) or other websites (NHS, ARUK, Wikipedia) etc Many of our Members use ALL forms and it is right to encourage personal choice. • Almost 12,000 people a month visit the Health Unlocked site, of which 20% are from overseas and include both patients with RA, their families, carers and health care professionals. The NRAS Forum is made up of almost solely UK patients who have RA and many Forum users feel the addition of another platform is a real benefit. • Since the launch of Health Unlocked, we have noticed an increase in traffic to our own website (2nd highest number of referrals) which is excellent publicity for NRAS and allows us to reach a much wider audience. Also, 40% of users of Health Unlocked feel they would be more likely to join as a paid member of the charity and 72% feel they would be more likely to help the charity raise awareness of the condition. • Our membership numbers have continued to grow since its introduction with an average of 70 new members every month. All our new members receive information about the Forum, including a username and password, and many have commented on how welcome they are made to feel when they post for the first time. Please keep encouraging them to post, perhaps have a ‘topic of the week’ to encourage discussion of the latest research or drug in the news, gadget on the market, NRAS fundraising ideas etc • NRAS members join for a number of reasons, for some it is because of the Forum but for many it is the other aspects of membership that attract them, such as being part of and supporting the RA community by giving NRAS a louder patient voice. The Members’ Care Plan, the NRAS Magazine and having the opportunity to volunteer or campaign for NRAS are also greatly valued. Our Members’ are the voice of NRAS and we actively encourage you all to participate and get involved. Membership isn’t a spectator sport! The best way to promote NRAS and membership is by word of mouth – there are 4,000 of you and only 20 of us! • The NRAS magazine is sent out 3 times a year to all of our members, so please pass it on once you have finished reading it. Also, we still have copies of our spring edition available and so we would be more than happy to send you a few to put in your local waiting room on your next visit to the doctors, hospital, dentist, church, community centre. • Although we would love to advertise, the cost is too great and we currently feel our resources and funds are best used in other ways, such as providing a better service to those with RA and their families. I do hope this has alleviated some of your concerns, particularly over Health Unlocked, and please be assured we take all ideas/suggestions very seriously. Please do keep them coming! Happy weekend to all  Emma Membership Supervisor
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Rank: Advanced Member Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Emma - thanks for such a thoughtful and detailed reply. It has certainly helped to clear up a few of my concerns. I hadn't really looked at HU, but after this discussion I went and had a looksee. It does indeed look very lively with loads of posts every day (it seems), but I think I will stay here with the forum, and my reasons are this: 1. RA already takes a lot of my time away, and I don't want to spend hours online every day, but I do want to make contacts with people who understand what I go through and can offer support and companionship. I like this forum because there are a lot of friendly people, who ALL know first hand what it's like - as a daily forum it is attractive because it is compact - small and beautiful! 2. I've learnt a lot about RA in a very short time, but the future looks very cloudy, with lots of uncertainties and that makes me very worried! However this forum helps because people are in various stages and levels of severity, and by coming here everyday I'm getting to know their personal journeys through RA. That knowledge is starting to give me a better perspective on what could happen to me and how I can help myself to avoid some of those complications and how to deal with those that are inevitable. 3. It takes a lot of trust to open up and share inner details of our health both physical and mental, and I don't do that lightly. And I respect and value other people who do. Over the couple of months that I've been coming here, I am happy to say that I have quickly felt reassured by the honesty and integrity of the people who post here. And now that we've had this discussion, I find myself further reassured that this forum is limited to RA sufferers who have the commitment to join the NRAS and make their mark. I'm not sure that I want to be so open with people who do not suffer as I do - how can they really help me? And finally how do I get hold of some back copies of the NRAS mag? I'd love to put some in my GP and dentist - their current stuff is sooooooo outdated!!!!!!! Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member  Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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Hi Emma I agree with Sylvia, I'm happy on this nras forum......small, friendly, I enjoy reading personal day to day of living with RA. I would not dream of sharing such personal things face to face. Glad I joined nras! Thankyou everyone for sharing such personal stories and experiences. Jane Xxx
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Rank: Advanced Member  Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
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i personally prefer this site,i did go on the hu site,too much nonsense for me at the time but felt on here it is more like talking to friends as said and still have a laugh,hopefully more people will come on board,i constantly talk about the web to the nurses and physio about how i have been helped,keep going guys,dorothy.
ps,been out playing on my push bike between showers but have popped on for a nosey now and again,
i will take mags as well, i can leave them at the coffee shop where i meet with the red hatters.
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Rank: Administration
Groups: Registered, Administrators
Joined: 3/20/2012
Posts: 87
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Thank you all for your positive replies. I've sent out back copes of our magazine to Sylvia and Dorothy today but if anyone else wants a few spares for their DRs/Dentists/coffee shops or to give to friends who might be interetsed in membership etc then do send me a quick email at emmas@nras.org.uk or give me a ring on the office number 0845 458 3969. Thanks! :o)
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Rank: Advanced Member Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
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thanks emma got post today, will pass on, fingers crossed,dorothy
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Rank: Advanced Member Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Thanks Emma - I'm currently in Paris having a fab few days - just me and hubby   , so hope to get the mags when I get back. ps - I've been shocking staff at the Musee D'Orsay today as I bowled up with sticks and little tri-pod seat and they were absolutely great. They took one look and immediately ushered us to the priority queue where my little seat was a godsend as I could sit and admire the Gauguins and Van Goghs without getting too k*****ered. I did get a little bit peeved in the Orangery with the waterlilies by Monet, when they wouldn't let me take in my seat - I had to sit on the public benches with everyone else, and it wasn't nearly as gratifying! Ho hum - I guess I can't be special all the time! Cheers to all - Sylvia Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello All I am still here. I am afraid though I have only looked in once in the past month. I had been off work with vertigo again, busy with Grand Daughter, Olympics and having to have an 'investigation' at work as I am not perfoming in my sales at the office. This really stressed me out . I have been on holiday past week and spent 5 days in South Ireland - Dingle Bay - beautiful part of the World loved it. Home now with very swollen feet as I was on them much more than usual. I do not participate in HU. This forum has helped me so much in past couple of years, along with admirable people like Lynne, Jean Doreen etc etc. When I first joined there were a lot younger people on here who had young children , so perhaps the HU is more suitable for the likes on them. I love you all and would be disappointed if the site disappeared - so I promised I will try and post more often. Hope the closing ceremony of the games will be as good as the opening Rose
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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sorry . .. .
not forgetting Jenni B - she is amazing x
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Rank: Advanced Member Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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sylviax wrote:Hi Emma -
And finally how do I get hold of some back copies of the NRAS mag? I'd love to put some in my GP and dentist - their current stuff is sooooooo outdated!!!!!!! I've just tried to leave a couple of copies of the mags in my GP surgery when I went for my usual blood test and have been astonished by their reaction!!! I asked the receptionist and fully expected her to say "I'll check with my office manager" which she did, but she added that it will have to be discussed at the next practice meeting before it can be approved. I'm pretty staggered on so many levels, not least because that they have approved OK magazine and Saga, but seem to have doubts about a well respected medical charity. I suppose I should be thankful that RA will at least get a mention at their practice meeting, but it seems a bit of overkill to me when I was simply offering a bit of light reading for bored patients. I asked to be told the result, so I'll let you know what they decide. Sylvia xx btw - my GP practice have just implemented an online system for ordering repeat prescriptions plus I can look back on my appointment history - progress eh!! I've just ordered folic and MTX so we'll see if their system works better than their awful phone ordering service. Be kinder than is necessary because everyone you meet is fighting some kind of battle
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