I am sure this must have crossed most of or thoughts before - but I am wondering if there is any collected or possibly 'collectible' data from this forum about who or whom do or don't eventually 'get better'and leave us. My GP wryly commented to me (he is a rather nice chappie usually) that many health forums tend to inordinately reflect the experiences of those 'doing the worst' with their ailments. In other words he is suggesting that we hear the wailing voices the most and therefore have a skewed view of the impact of a particular illness which may impact a spectrum of individuals with less severity and (even) duration than we are inclined to think .... Well I am sure many of you will heave a huge sigh at such a statement - just as I did - BUT I am wondering just how we can get more info from those who do manage to get 'better' or go into remission over time as many of them have or will - some without 'farewell' - just disappear forever from the forum.
The long-termers here will no doubt have the most insight into this phenomena - if it can be described as such a 'thing' but it seems unfortunate we cannot at least derive some final and potentially valuable comments or insights from them before they depart. Given the number of followers on this forum and the percentage of regular posters here I am inclined to think there is something in this observation and wonder how we could request more info from these less than usually loquacious people ? I am not sure how this could be achieved - maybe an 'exit survey' of some kind - or just a straightforward initial request for this as a requirement when joining . Am I dreaming that this might even be possible as it is quite evident that forums like these hold a wealth of info with great potentialities if they could just be 'mined' more effectively. What do you think ???
All good wishes
Rimmy
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Rimmy
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I think that is a great idea! I have been documenting my hopefully remission of GCA, and I would certainly complete an exit survey upon completion, though I imagine I would still be checking in as this forum has become an important part of my GCA journey and I care about those I have met here. And I am more of a reader than a contributor. I have only been on this journey a year and a half and only contribute when it is something I have been through or felt. You, Rimmy, are one that I always read your posts.
Many thanks - and like you I am sure when it is (hopefully) eventually 'over' for me I will likely continue my connection with this forum as I have 'met' so many wonderful people here. But I can imagine after a while many will 'disappear' into other worlds - and understandably so. Obviously such a 'survey' could only be voluntary but it could be useful to elicit some basic info such as - duration of illness etc etc .... The big question is I guess who would do the necessary 'work' ... ?
I don’t know how many people are in “Club Zero” but some do post on here occasionaly. I am sure others would too if they thought it was interesting/helpful.
My reason to “stay around” is to give back to the charity for all the work they do, and the help they gave me.
They don’t have a local charity shop to work in, even if I had felt like it early days, there were 2 local support groups already organised in my area, plus I was looking after my late hubby, so the only thing I could do was offer support on this forum.
It never really crossed my mind to leave once I reached Club Zero, I just hope my presence confirms there is life after GCA! And darned good it can be at times!
Hopefully - always helpful, sometimes interesting.
There are others in Club Zero who contribute, but when they aren’t on here, they are still involved in the charity’s works - so not all of us disappear.
Biopic- diagnosed GCA April 2012 (after 18months undiagnosed). Start dose 80mg. Last dose zero Sept 2016.
Thanks DL and what an ASSET you are !!! I think your wee 'biopic' is a great idea !!
What would we do without you - always there 'on the ball' and with so much excellent info and 'advice' - I know I am one of so many who really appreciates you !
Good question about relapses - but if people 'return' this would be invaluable info in itself. I guess (we hope not though) we may have to 'exit' more than once .....
Agree wholeheartedly, even though I'm still a Newbie. Your GP's observation/hypothesis sounds quite sound! It's natural that we do hear (for the most part) from the "wailing voices," and we probably do have a "skewed view" of the illnesses based on those prevalent loud wails! ...but what about all those other people who were here, got better and left?
I've noticed that even as I have have better days and weeks, I'm not as inclined to post something, as I do when I am down or not feeling well. It makes sense that if I were no longer plagued with the disease(s), the Pred symptoms/side effects, doubts, and questions, I may not post or be on the site at all!
I'd be out living life wouldn't I?
I bet the site Administrators could run analytics to determine which Users no longer sign-on anymore, and send some kind of survey/questionnaire to find out why; asking specific questions about the experience with the illness and Pred, etc.
I think you’ll find that post GCA you have the energy to “live life” and contribute to this forum. (See my activity during 3 months in NZ) . Nor do you need to be “down or feeling unwell” to contribute.
We all need to be reassured during our journey that there life beyond GCA or PMR, so when you are in remission I expect you to still be on here!
Yes no 'piking out' Melissa - but I didn't expect you would - and I shall try also to chime in if and when I am ever 'well' again (today I am having doubtful moments - but they pass) as I have TRULY appreciated the continuing contributions of the experienced ones here - what would we have done without them !!
YOU are not going anywhere! Whether you are well, or not! You are a gem and we are keeping you here with us for the duration!
Me? I have a feeling I'll be "voted," out. As I become older, more cranky and outspoken... and my use of obscenities becomes more uncontrollable, Kate will be deleting my posts and asking me to turn in my registration card! She'll be looking for (begging) other Forums to take me on. *laughing*
I love your rants and even usually any 'obscenities' - and 'outspoken and cranky' are things I also expect to be (more of) as I age. I always envisioned myself with a walking stick (rather Maggie Smith - like) waving it at someone (non-violently of course) - after all we cannot just grow old and not have SOME fun !!!
XX
PS - You'll NEVER be 'voted out' here - it wouldn't be the same now without you!!
Thanks Melissa - yes the obvious question is about who would do the analytical work involved and what kind of incentives could be offered. I guess almost anybody could trawl back over past postings and look at information - but clearly any serious analysis would need to be organised in an appropriate way - and then if people 'say' little or nothing and then depart the forum (for whatever reasons) we are 'losing' a huge source of data which might later prove to be useful ... many questions and no doubt lots of problems to consider !
Yes.... serious (statistically sound) analysis = ££££ and the charity barley gets by now... It is a great idea and would reap valuable data if done properly, but... £££ will always be an issue.
Unfortunately I think once it`s over for most people when they are well, they want to try to forget about having been ill....
Obviously the majority of us on here still have PMR or GCA...and I admire those like DL to keep on advising....not sure what the answer is but agree with all you`ve said....
This is a very interesting idea. I also think we have to be aware there must be hundreds who read these posts but who don't post themselves, and that 's fine. They are benefitting from advice and experience like the rest of us. Would be good to see some analysis.
"I guess almost anybody could trawl back over past postings and look at information"
You do realise how many posts there are? The users figure is in excess of 7K but many have joined and never posted - who knows how many read without posting as many, but not all do.
Before I started posting on patient.info over 9 years ago I had read every single existing post. It took me months. You couldn't do it now.
The primary problem is that everyone's journeys are so different - you couldn't collate them under headings to analyse them as the variables are enormous.
Yes clearly impossible to read everything - and 'collate' - without any criteria for selecting info. When I said 'trawl' I was thinking more about maybe some keyword searches or using other sifting principles at least - but DL's example of a short 'biopic' on leaving the site could be a useful example which could be developed into a concise exit survey of some kind.
Have you ever looked at the keywords the site chooses? Hilarious and nothing to do with the topic at times!
I can look for a specific post, typing in the title, and the new search function on HU won't bring it up because it is "old" and apparently "old" means no longer relevant. So I use Google - which with all its warts works better for patient.info and now also healthunlocked than their own search functions.
Yes I have used keyword searching quite usefully here a few times - remember you asked me recently how i found an 'old' post of yours that way? I didn't think this was a way of searching exhaustively though and use Google as well obviously. I have no idea how the data of HU is managed - especially 'older' material but from what I have found myself much of it is several years old but still very 'relevant' at times.
You may be interested in this which I came across at the bottom of one of the forum posts. You click on the subject in the right & scroll down to see the results.
Thanks again for this - which was a pretty BIG survey with lots of interesting detail - I think a lot of forum members would also find it interesting - if like me they missed seeing it on the forum when the link was posted previously.
Maybe any survey should start small with each local support group collecting info and a volunteer collating it. Of course, someone will have to draw up the survey questions that can be answered on a grid, with room for comments for discussion at groups. I believe these should be anonymous to avoid data protection issues.
I am still here, I do not think I have ever posted but I try to help when I can. I am in remission and have been since March 2015 so thought that alone might give some comfort.
Hello Jannie. Could you tell us how long you had PMR/GCA and did you have a relatively smooth run? What were your main difficulties when decreasing to zero?
I was very lucky, I only had PMR which only lasted for 2 years. My GP saw me regularly and guided my reduction. I saw my rheumy only twice and she was not very interested, in fact she told me the second time that as I was on a low dose (about 4/5mg) and it was not doing anything!!!!!! I continued with my GPs reduction needless to say. I cannot recall any significant problem with reducing except for an exacerbation of my bronchiectasis at the end of a cruise when many people had had infections. At this time I was just finishing my pred so I was lucky as I say.
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