First - thanks to Paula for reminding me to ask this question.
I remember how bad I felt when diagnosed with CLL and then some time later when I found you all on HU, how much better all your posts made me feel - I'll never forget that.
Thinking about new members, I note the "Pinned" posts on the RHS, also the "recommend" feature.
However I think we all see some great posts, but as yet I'm not sure if we are using the "recommend" feature, and the intentions for this.
I note posts are "Pinned" by the community admins, and I'd agree some manual control is a good idea (don't rely on the computing alone).
I guess HU is perhaps not supposed to be a reference library, however CLL is so dynamic that I think a forum is a good place to keep the information live and relevant.
The start point for new members for me is the "Developing a reliable and current international list of CLL Information & Resources" post.
So me silly question is, should we be using the "Recommend" button more to help the admins identify the best posts to pin ? (I appreciate there may be technical hicups for some)
Guess I'd like a bigger "Pinned" list, if that might be possible ?
You have all written some great posts - I just don't want to lose them.
Recent IGVH/IGHV was a good example - I got well confused by that when I asked my team (I just didn't understand enough before asking), but great answer here on HU.
Thanks all.
Ernie
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Ernest2
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I think you have raised an interesting need for us to address we have not been updating the list after starting it and recommend is somewhat erratic but when working and used it would provide us with some additional direction in admin..
We will extradite this as soon as we can. unfortunately search and tags are broken preventing any of us from accessing the data base of posts. so finding and pinning posts has not been able to be carried out, HU are promising a fix on this and that it is at the top of their list.
In the meantime we will manually go through all posts to source important topics that are well discussed and explained and post these. Also suggest we start a few that may be lacking and update the wall.
we won't lose the great work we all have done, HU assure us that their priority work is providing us with a working search and tagging system to allow us to archive and retrieve our information
I must admit my patience is wearing thin I can only imagine that is the same for all. Please raise any questions on any topics we will continue to provide links and information if we cannot locate an earlier discussion thread at the moment.
I am with you on this, just get a bit frustrated at times that after we have all done so much to get the good stuff down for others the internal search is limiting us. I just did a few google searches myself and was surprised to see how many HU comments come at the top of the search when prefixing a google search with healthunlocked,com/CLLsupport this has answered my problem .
I just used watch and wait with this in Google and two and a half pages of our discussion on this appeared.
these links could be used to direct people to key topics in the shorterm? while we await a fix perhaps
Testing this for watch and wait : healthunlocked.com/CLLsupport watch and wait
18 Sep 2013 - is it down to the individual what they experience ie ......some are really soaked and have to change pjs and do others may experience a mild ...
There must be many of us on this site that are fortunate enough not to have required treatment for our CLL yet. However, that does not mean we do not ...
I cannot fully update my profile because watch ... - HealthUnlocked
"Watch and Wait" is a common 'treatment' for chronic conditions in which the disease is monitored by a specialist to determine whether intervention is required.
I was diagnosed 18 months ago, and am still on watch and wait. I ...
23 days ago AussieNeil Administrator. May I ask what is the purpose of your question? Finding like company doesn't mean that being in this situation is ...
18 days ago HAIRBEAR CLL Support Association. Thanks Chris for the ... Hi , Night sweats ....still on watch and wait not experienced night ... Aug 3, 2013 .
How long after diagnosis did you first receive treatment or are you on watch and wait? Feel free to post a comment about what treatment(s) you've had, incl.
Many commercial organisations would go for that kind of approach, because it does not require maintenance intervention (that costs them money and needs budget etc. . . )
I'm trying to think of something with best of both worlds.
The great thing about HU is the live nature of the info, and I don't want anything that puts a dampener on that.
Minor detail - I link will be required (or is preferable) to whatever everyone thinks is the best solution.
Great that these things come up on google, but that's not where I want to find them. I'm afraid I'm increasingly unimpressed with HU and am beginning to think that a different service, even if it means chipping in and paying for it, might be better. At the same time, Nick, take care of yourself first! This problem will wait, but won't be dealt with as well if you overdo now and aren't here to find the solution. I appreciate that it is a good thing to have a group that is not US based, as the issues regarding health care systems vary a great deal from country to country - Oh, the things you learn that you really never wanted to have to when you get a diagnosis like CLL - but so far it seems like the administrators of this group are teaching HU how to do their job.
First thing to be aware is anything posted on the internet is available to Google (and the like) whether we like it or not, unless HU had a special encryption tools / service that we would have to install (Hence Neil's recent advice on security).
Aside: Personally I don't want to join the dark internet - or whatever they call it.
I see the openness as a bonus because of the great searching power of such tools as Google, and that it will draw new people to HU (Have a look under the "Members" button (purple header) and you can see CLL on HU is upto nearly 600 members. That's great, but there are lots more potential members out there I think. I guess we are restricted to the English speaking world until they build in translation tools one day. e.g. I'd love to see some members from Japan telling us about their new drugs for CLL.)
Unfortunately I think Google don't give away their search engine for free (Anyone please provide any further thought on that - point out where you have seen that or other good search engines built in anywhere)
In the commercial world, the search tools many major companies provide on their own web sites, are not the best, to put it politely (so you resort to Google and the like)
So please have a go at Googling (or equivalents) - It is amazing what you kind find.
It's not that I necessarily find the HU built in search particularly bad, but (out of habit) a search from outside may give you more interesting results
You can then post us all new topics / ideas here on HU
I've got some ideas for workarounds I want to discuss with Nick - will let you know.
Personally I see it as a good thing that the "admins" are feeding ideas to HU (and I'm glad for HU folks to be burning the midnight oil, as the CLLers need to be getting to bed on time - time wasting is a bad feature of mis-bahaving computers . . . )
P.S. Anyone: Can you add your favourite search engines ?
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