Here's your opportunity to respond with feedback on what you like about the content on this site and where you'd like to see changes. (I'm not talking about the site design and performance; that's a separate topic - see below.)
What I and other contributors want to know is what kind of postings and questions you like to see and what you'd like to see less of. Also I'd like to know why so few of our community are posting content. We've got over 500 members now, so why are only a handful active contributors? I'm sure many of you have unanswered questions, experiences you'd like to share, encouragement you'd like to give, frustrations you'd like to air. What's stopping you?
PLEASE let us all know what you want! Having CLL hasn't made any of us mind readers.
Thank you,
Neil
(Much as some of us might want to go back to way the old site worked, that's out of our control. The HU Team have taken note of our complaints and will be bringing back some of the greatly missed features of the old site and they are also promising improvements to this site, so hang in there! Yesterday the site loading times were again abysmal, but that problem is now fixed. [The HU Communities use the Amazon Cloud web service and Amazon had a major technical problem that impacted some big sites yesterday, so we weren't alone in having problems].
The HU Team are still trying to fix that extremely annoying problem of unreliable notification of posts, replies, etc. I'm sure that that is partly responsible for the lack of general activity, but again, that's out of our control and will hopefully be fixed soon. Site content is however within all of our ability to influence.)
Written by
AussieNeil
Administrator
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It seems to be a issue with most sites that only a percentage ever post but it's difficult to capture the reason why or to know how many benefit just by simply reading. Those people are often called 'lurkers' which sounds derogatory but isn't meant to be at all.
This site provides a wealth of information, scientific updates, health suggestions, links and international CLL developments which we may choose to read, absorb, delve further or dismiss. It's a purposeful site and sometimes moves at quite a high 'technical' level. We have to accept that many members will be left baffled at the depth in some information and feel inhibited about contributing. I know I do at times.
But I believe, site difficulties apart, that it has to have some kind of informal 'hub' so that people feel able to just say, 'I'm feeling so rotten today, I'm afraid, I feel guilty about the pressure on my carer etc. etc. Posting is not always a quest for clever answers, sometimes it's just about reaching out to people you know will understand without burdening loved ones. That will never detract from the main purpose of the site but may make it less intimidating to some.
Maybe a poll is needed to explore reasons for lack of posting. It could be as simple as 'too busy, 'the site is too technically cumbersome', 'I'm too shy or feel I can't find the right words', 'I don't need the help', 'I never feel well enough' or 'I just can't be bothered' etc. etc. At least then it has a degree of anonymity without people having to add explanatory dialogue (unless they want to).
My concern is not the people who'd rather not post but those who for whatever reason don't feel able to (and that may be about glitches with the site). A agree with Neil that there must be members out there who would benefit from support, advice and friendship. It's not about pressure, it's maybe about releasing the barriers to allow it to happen.
(And how do I get rid of this annoying green menu bar that's obliterating the middle of my message? Grrr! Lol)
Newdawn x
I lurked a while before I posted as do others I suspect. I think maybe, only maybe, some people are intimidated by some of the technically informative postings and questions. Many like me, 3 years into our CLL journey are only now starting to come to grips with all it means .That does not mean I don't like these details, I think its great to be able to learn in this safe environment, but I'm a reasonably confident person not worried to show my lack of knowledge. There will be thiose much more technically astute than I that just want to be sure to keep up and not share.
I'd guess others are living day to day and don't want more information, just want support.
Some CLLers maybe just need to share, their feelings, their fears, or just that they are having a really bad day and need a response from people like us that understand and care so they don't feel so alone.
How one communicates that this site is also for doing just that I'm not sure, perhaps just a forum within Cll would work, perhaps one that rolls over week by week and is deleted as 7 days pass so that the site does not get slowed up. I agree with all Newdawn says just putting it in my own words.
When all else fails ' hello! you who just lurk, hope you are having a good day, we welcome you and hope one day you will feel able to join us'.
I hope I have pressed the right button but cannot be sure. I have, as you know, posted blogs in the past but cannot on the new site as I do not understand how it works. I'm not even sure whether this reply has worked. I want the site to be everything. Medical, technical, informal "talk", especially videos where you cannot be there in person but still feel included. Its the world wide web after all. I want to carry on posting but am very put off with the new site.Sorry to be so negative but I want people to understand how much this site used to mean to me, now I just feel a sense of loss. Best wishes
Hi jangreen. I'm reading your response, so you did press the right button. You are not alone in your frustrations with the upgraded site; I think we are all struggling with it but if there's something you want to say or ask, then write it anywhere you can...... Better than nowhere!
I suppose I am one of the lucky members - recently joined - and therefore never experienced the old CLL Website. However besides a few glitches and slow downloads - I seem to be able to get my posts and questions through. (Unlike the more confusing CLL FORUM in USA - which I have seen NewDawn registered!!)
(IF IT HELPS --->> One thing that I use for generally for e-mails AND now for posts on this and other websites is typing the words in Microsoft Word or Notepad - then copying & pasting into this reply box.)
The advantages are:-
That you can see and edit what you are posting at leisure - without the pressure of will it work OR will my connection cut-out!
That you have a copy of what you have written - if the worst happens!
If you want to check some fact / spellings - you don't risk losing what you have written.
You can take a break or phone call - and not worry about being "timed-out"
In the last couple of months I have found the contents of this website varied, informative, humorous, useful, and above all friendly.
As a minor comment - information about diets appears to be missing.
Let the IT guys work their magic - and let us CLLers converse about their lives, thought and experiences.
Regards,
Marty.
[[In clinical trial treatment B+R and Idelalisib / Placebo.]]
However, I have asked questions when i have needed to and have really appreciated the replies but I also suspect there is a bit of me that doesn't want to bother anyone with what may be a daft question.
I like the support of knowing there are people 'there' who know more than me and also the interviews of CLL experts who are so informative, encouraging and helpful.
I don't feel on my own as a result of this site, I don't understand everything I read, but I keep learning, and I find one thing leads to another. I have benefitted from reading posts, others questions and answers and have followed the advice given. There isn't any thing I wouldn't want to have read about. I like to know everything I can so that I can help myself as much as possible but I have only really started learning more about CLL as a result of this site, and I am several years down the line. What has concerned me a lot in the past is what questions i should be asking my consultant and in what order at the varying stages. ( will I forget the obvious crucial question )
As regards posting something I may have found on another site, hmmm, I guess I wouldn't know where to start as to how to do it, not that good with computers! Or what others would want to know!
I really don't have a clue as to how sites are supposed to work, I just get concerned if I haven't received any blogs and then look for latest activity, I assume that at weekends it seems that blogs don't come through for a day or two.
For those of you who regularly post, thanks a million I think it's great, please continue.
Thank you to those that have replied. Some good suggestions there! It is also reassuring to know that those that contribute are providing helpful, interesting information and that we are a friendly community.
Marty,
You may be interested to look at the poll we took some time ago on what people have done to improve their health since diagnosis:
Diet changes are a fairly common response. I thought my diet was good prior to diagnosis but found it could be improved further and I know there is still room for improvement.
Perhaps we should start a discussion on diets or have a specific poll about them. Anyone want to start one?
For all you lurkers out there that have questions but are concerned they aren't important or are embarrassing or perhaps not related to CLL or whatever the reason is that you don't want to ask - well you'd be surprised at how many other lurkers are thinking the same. Sadly that means that all of you are missing out on some reassuring or helpful advice from someone else that has already gone through that very same issue. Just think of all the wisdom and experience 500+ people have in total!
I'd like to say that in spite of its technical failings, this site has been a WONDERFUL help to me. It's the people that make the difference - their acceptance, helpfulness, humour, sharing of human weaknesses as well as sharing the latest technical/medical stuff. I have learnt so much, as well as feeling much less alone on the CLL journey.
However, some folk feel intimidated (very understandably) by complicated medical language. I wonder if there could be some clear distinctions made, between "detailed medical/technical" stuff, and "friendly support/need a listening ear". So if someone wanted to skip the detailed scientific stuff, they could choose a clearly-marked "Friendly" section, and avoid the "detailed scientific" sections. Or vice versa.
As I think further, maybe that's making things too complicated. Human conversations can't be so easily classified, and if folk have to decide whether their contribution is "friendly" or "scientific", it would inhibit spontaneous comments. However, maybe the more complicated, scientific stuff could be CLEARLY labelled as such, so people wouldn't feel inadequate if they can't take it in. They could just ignore it, and not waste time struggling - wondering if they are the only ones who can't understand. (Like I do sometimes, even though I was a Registered nurse in my pre-CLL life).
Another thought - As I've looked back at previous postings and threads, I see that occasionally someone asks a question or seems to be looking for friendly support, and there is no answer (well not on the main site anyway). If that happened to a newcomer, they would probably not come here again. However, I'm very impressed that most people seem to get at least one response, if not many. Which is great.
It is very rewarding to hear how helpful this site has been to those that have responded so positively - after all this is what this site is all about, supporting each other.
I reckon we need to look at out categories again and include one for light hearted fun stuff. Also the HU Team are hopefully going to let us include our own tags again, so when that happens we could add in a tag to indicate heavy scientific/technical/medical posts.
Paula, what worries me most is that you've found unanswered questions. I suspect this is mostly due to the currently unreliable notifications process. That means the admins and volunteers don't always see these unanswered questions (especially if the reply is to an older question/post) unless they stumble over them. When this happens I'm sure we all feel that we've let that person down, so PLEASE, if anyone comes across a question that hasn't been answered after a day or so, let Hairbair or me know about it if you can't help and we'll do what we can to provide the requested support.
Thanks for that link to an old poll - 23 replies AND over 240 votes - someone must be out there.
There does seem to be a common theme about using Green Tea or tablets, vitamin D, exercise, positive thoughts and at beer / wine - in moderation.
Being in treatment at the moment, it is difficult to evaluate each on a personal level, but once out on remission I hope to adopt some of the above - although I am a confirmed black coffee drinker.
Hmmmm ---Thinks that "A green tea lager maybe a missed opportunity by some of the brewing companies !!"
At least your post brought some of the "lurkers" out from behind their keyboards and mice - to try joining in.
Keep up the good works,
Marty
Hmm! 11 replies are great but it would be good if we can do better and make Aussieneil's day.
I'd love to know how others in watch and wait (like me) are doing and how you cope. :- )
You are in plenty of company in missing that feature. It was also very useful when answering questions as knowing just the country the questioner came from helped the responder provide a better answer. We may see a replacement once higher priority items are addressed by the HU Team.
All new sites take some getting used to. I have just come back from holiday and the site seems now to be working well (ok, notification problems ongoing). I think it provides useful info and for those of us who want to find out more, useful post/question functions
OK only a minority actually post (and I am irregular, only percentages of active posters, so this site not unusual. After all, sites of this type are still fairly new. Once those currently at school/uni get CLL (and who see internet as part of core life), the number of active users will go up!
You should be able to get data on numbers who visit and perhaps that is an important indicator - they will be viewing questions/posts. It will be a higher number than active contributors. Question is how much higher and how close is it to total registered?
Another thought is the nature of CLL. You have a burst at start whilst you try to understand disease: then nothing might happen for years (so why visit site?) until you require treatment (when you might come back to the site)
So perhaps it is ok for a significant proportion (on W&W) to not visit: important thing is when they do need something, it is there to provide info/support
We are flying blind at the moment with respect to site visits - Analytics Reporting is understandably a lower priority with the HU Team than getting the site working well - and that has taken them considerably longer than we'd hoped would be the case. We still don't know when reporting will be available.
I'm certain that you are right about the nature of CLL influencing the frequency of visits by members. Also, we've recently found out that some member's notification settings may have been corrupted, hence my recent post on checking your email preferences: healthunlocked.com/cllsuppo... If these are turned off or weekly preferences are selected, then that will result in less visits than would otherwise be the case.
I've had to learn a great deal about living with CLL because I'm at the stage (IV) where it is having an every day impact on my quality of life. Having seen the personal benefit of education in helping me get much of my quality of life back, my vision in becoming involved in supporting this site is to help others to achieve the same. I need to remember that many members have no symptoms of CLL other than an elevated lymphocyte count and they wouldn't even be aware of their CLL if it hadn't been for an investigation into an out of the normal blood test result. That's excellent for them and as you say, the "important thing is when they do need something, it is there to provide info/support."
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
a while before I posted as do others I suspect. I think maybe, only maybe, some people are intimidated by some of the technically informative postings and questions. Many like me, 3 years into our CLL journey are only now starting to come to grips with all it means .That does not mean I don't like these details, I think its great to be able to learn in this safe environment, but I'm a reasonably confident person not worried to show my lack of knowledge. There will be thiose much more technically astute than I that just want to be sure to keep up and not share.
New to Site Imbruvica & Rituxan how are they tolerated together.
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