17 replies to this topic

[Trey]

I have been working with Dr Saltzman of LLS to improve the Community site, emailing and talking with him regularly.  Dr Saltzman is an L&LS patient first and foremost, with two separate blood cancers.  So he wants to help.  And he is trying to make Community better for us, and has, in my opinion, made good progress in the past couple days.  And there are more improvements coming.  So I want to suggest that Dr Saltzman is on our side.  He is the one who stepped up to deal with the Community issues when everyone else at LLS just told us "too bad, so sad."  So I am impressed with Dr Saltzman and his efforts to help.

 

Here is what he has done already to resolve issues brought up by us:

 

Made posting new threads more intuitive.  Added a "Start a New Conversation" button (instead of the "What's on Your Mind?")  This is already functioning now.

 

Posts can be edited or deleted by initiator within 48 hours of posting.  Functional now.

 

Internal messaging works without "Friending."  Functional now.  So the "Friend" function has no value.  Please DO NOT SEND FRIEND REQUESTS since it has no purpose and it may be deleted soon.

 

Coming Soon but Maybe not by February 1:

 

Old posts from the past couple years should be added soon.  The old platform Website Developer company is not being very cooperative on this.  So the timing is unknown for now.

 

Articles will be put into a separate folder instead of in with the posts.  There have not been any recently, maybe just due to article cycle timing.  So Community already looks less cluttered.

 

Working on the following issues, but no promises about whether these can be added:

 

Add titles to posts

 

Bolding / unbolding posts which have been read (need titles to make this work)

 

This old site will presumably be shut down on February 1st, and will probably not be visible any longer as far as we know.  The current Web Development vendor has not said what will be done.  It may just show a broken URL.  I would suggest if anyone wants to keep old posts, save them to your own computer instead of migrating them to the new Community site for now.  Then maybe add them back in later if they are significant.

 

Old posts from here (past couple years) will not be visible again until they are migrated over (may take week or weeks).  So if there are recent posts anyone cares a lot about and want to continue the thread, you might want to save them on your own computer, and possibly re-post them over at Community.  LLS is not certain about the old posts because the Website Developer has not provided information.

 

If you want to continue posting through LLS, here is some information:

 

Register at LLS Community:

https://communityview.lls.org/

 

CML portion of LLS Community:

https://communityview.lls.org/groups/chronic-myeloid-leukemia

Edited by Trey, 30 January 2018 - 07:23 PM.

[hannibellemo]

Trey,

 

I never even saw the original notice that said this board will be closing. Can you direct me to that?

[Trey]

This was posted by LLS sometime in January:

 

"The Discussion Board platform will be merged into LLS Community on Thursday, February 1, 2018 due to technical challenges and the need to better safeguard our community from inappropriate content.

We realize how important this platform is, and that many of you have relied on it for support for many years, so we are making every effort to help you during this transition.

Here's what you need to know:

    Your Discussion Board threads (posts, comments) posted within the last 12 months will be moved to The LLS Community forums.
    Conversations will continue within LLS Community. There are currently 7,000 patients, caregivers, and supporters engaging in discussion there now. LLS Community is better equipped to adapt to new technology and security needs.
    The Discussion Board platform will remain active until January 31, 2018.

The Leukemia & Lymphoma Society (LLS) is committed to facilitating a vibrant online community where patients and caregivers can connect with one another on the topics that matter most to them.

For more than a decade, the Discussion Boards have provided support for a diverse group of patients and caregivers impacted by blood cancer. During this time, technology has continued to evolve, and online security has become more important than ever. Further, inappropriate content posted within the Discussion Boards and recent technical difficulties have led us to reassess the viability of the current platform. On Thursday, February 1, the Discussion Board platform will be merged into another online platform called LLS Community.

We see that many of you are already members of LLS Community. We encourage all Discussion Board members to join LLS Community where you can continue to engage with the connections you've made and provide each other with the vital information and support you rely on.

To help you with this transition, we will share a brief video tutorial and printable instructions in the coming week."

Edited by Trey, 30 January 2018 - 07:28 PM.

[hannibellemo]

Thanks, did the video tutorial and instructions ever materialize? Will your information for the newly dxed be made available on the community site?

 

I am learning more about the site as I go along. At my age it isn't natural for me to just go clicking buttons to see what something does but it's getting easier! 

 

So is it 11:59 on the 31st or tonight when this ends?

[Trey]

What to do on the Community Site:

 

1) Register:

https://communityview.lls.org

https://communityview.lls.org/groups/chronic-myeloid-leukemia

2) Set up information, avatar, etc.  Also change privacy settings.  I suggest not being too open.  You can easily reveal too much on Community.

3) To start a new post, click "Start a Conversation."

4) To reply to a post thread, click on the "no# Comments" where "no#" is the number of comments on the thread so far.

5) To send a private message, click "View Members", click on the person you want to PM, then click "Start a Conversation"

6) To edit a message because you said something stupid, click the down arrow on the message within 48 hours, then click edit or delete.  If it is really stupid or whining, suggest delete.

7) DO NOT "Friend Request" people.  It has no purpose.  LLS can probably put a picture of a dog up if you want a friend.

8) To stop whining, simply stop typing.  My "Thanks" in advance.  I do not work for LLS.  I am not the site "administrator."  I am just another patient.  If you think my work with LLS to make the Community site work better is ill-advised, any comments you may have can best be administered in situ, aborally*.

 

 

* in situ: In place, where you are

* aborally: Other than oral, usually anal

Edited by Trey, 30 January 2018 - 09:07 PM.

[tiredblood]

I like how this old site goes to the newer post in the thread and not to previously read posts.

[IGotCML]

Trey, thanks for all your assistance and information regarding the migration to the Community site.

[DebDoodah22]

I am worried i will not do this right before it goes away. My email is deborahjnoe@aol.com .
If you dont see me on the new site by Sunday...can someone email me directions on how to reconnect.
If not, Godspeed and many thanks to Trey, Hannibellmo, Scuba,and so many others.

[hannibellemo]

Ok, I'm going to be an adult about this; I deleted my whingy posts! (She said stamping her little foot.)

 

Deb, I have you in my contacts will send e-mail so you have mine.

[cmljax]

Trey:

Your efforts on our behalf are very much appreciated.  Thanks for caring and for all your support to those of us in this community.  It has been invaluable.  I intend to give the new LLS Community site my best shot and hope everyone else here will as well. I think we can make it work for us and it is probably the best option for now if we all want to stay connected after today.

 

Thanks again Trey - you are still my hero.

Ted

[Red Cross Kirk]

Trey,

 

I never even saw the original notice that said this board will be closing. Can you direct me to that?

 

Here's the link:  http://www.lls.org/l...scussion-boards

[hannibellemo]

Thanks, Kirk!

[kat73]

Deb - I am not as computer sophisticated as Pat, but I have (hand)written your email address in the little notebook I keep next to my lumbering PC that has all my computer "tricks," fixes, instructions, passwords and other sundry cosmically necessary items feverishly translated into human-speak.  If I don't see you, I will come for you!

 

"What to do when the screen is all black"

"What to do when the border is off the screen and the mouse won't reach"

"How to scan to email"

"Cut and paste"  (This one I have never believed in and so don't touch, as it has special powers, and I am afraid)

ETC

[Trey]

THIS SITE WILL SHUT DOWN AT 11:59 PM EASTERN TIME USA

 

THIS IS NOT A DRILL, UNLIKE THAT HAWAII THINGY.....

 

Old posts from this site from Jan 1 2016 and on should appear within a couple days on the Community site, which is better than thought at first.

Edited by Trey, 31 January 2018 - 03:03 PM.

[scuba]

Goodbye, Trey. 

See you on the other side.

[M.A.]

Brilliant news that the posts from the last year should appear on the new site within a couple of days! Thanks for your advocacy there Trey!

 

I wonder if the signatures with peoples' responses will be carried over as well. I am guessing not, but if it could be done it would be fabulous.

[hannibellemo]

I can't help but think Tex would not approve! RIP

[Red Cross Kirk]

It's official!  Trey has copied his avatar to the new site.  There's no going back now!    Why does this emoticon remind me of JPD?