71 replies to this topic

[tiredblood]

I'm gonna miss this. Sometimes I'd look back at my posts to get a timeline of my symptoms or side effects.
Will our signature line/CML history function still be available? The cessationist thread?

[tiredblood]

I've been on the community site and I just don't see myself participating there. Maybe I'll give it a try, but if I don't, I want to thank you all. Couldn't have navigated CML without you.
We're loosing all our PMs too, aren't we? Just copied the CD34- one where you explained my sleepwalking CD34-, Trey.

[Red Cross Kirk]

I'm gonna miss this. Sometimes I'd look back at my posts to get a timeline of my symptoms or side effects.
Will our signature line/CML history function still be available? The cessationist thread?

There's a thing over there called "MY STORY".  You can access it by clicking on your user name at the top of the page, you will be delivered to the page with "MY STORY".  Come back to this forum and copy your signature.  Go back to the new forum and click on the big red "Edit my story" button toward the bottom.  Paste your info there and then click the "Save" button.

 

It's not exactly the signature thingy we have here, but it's easily accessible when someone clicks on your user name.

 

Hope this helps.

[Melanie]

So what happens to this forum? Who owns or controlls it? What happens to all the information and discussions? Once it goes offline, can someone re-start it? I don't understand how these things work!

I can't seem to get registered on the "Community". It just keeps saying my email or password is invalid...

[Red Cross Kirk]

So what happens to this forum? Who owns or controlls it? What happens to all the information and discussions? Once it goes offline, can someone re-start it? I don't understand how these things work!

I can't seem to get registered on the "Community". It just keeps saying my email or password is invalid...

I believe the LLS owns the data (words we've written over many years), and they lease the platform (software) that we use to input and retrieve said data with.  Technically, there is no reason that all of the discussions that are in this database couldn't be restored in the newer forum.  Hopefully they don't just delete the older stuff just out of convenience.

[scuba]

I received a nice response from Dr. Nichols on the impending changeover from this forum to the new community forum. She told me that they are very much listening to our concerns and making adjustments. They intend to carry over our discussion threads from 2016  Unfortunately, that leaves a lot of historical knowledge lost when the move takes place at the beginning of next month. 

 

I don't know if I will be as active on the new site as this one. Only time will tell. But it is a sure bet that this forum is coming to an end.

 

If anyone can suggest an alternate forum already up and running which is structured similarly to this one, I would be happy to check it out.

 

All the best to all - I have enjoyed learning and contributing with everyone here. I might even miss Trey.

[cmljax]

I also heard from Dr. Nichols (see below) and I think we need to give LLS Community a chance before we find another.  The best I have found is the one in the UK, but it has differences from this forum and is not nearly as active. I am going to try my best to use LLS Community in the hopes that LLS will listen to us and continue to work with Trey to improve it. I am hopeful that this will happen. I am going to try LLS Community for a while and hope others on this forum will give it a shot as well.

 

 

Dr. Nichols:

Thanks very much for this email. All of us who have been heavy users of the Discussion Boards appreciate your concern for us and your willingness to work with us to improve LLS Community. No need for a call at this time as I think Trey can best represent the interests of the Discussion Board users.  I commit to you that I will use LLS Community and provide feedback to you as and if I think it is warranted.

 

Part of the issue is just getting used to something new, like a new phone. But part of the issue is certain formatting and functionality that exist in the Discussion Boards that does not exist or is limited in LLS Community.  Over time, I hope we can all work together to make LLS Community as good as if not better than the Discussion Boards.

 

Best regards and thanks again for your involvement in this issue,

Ted

From: Mission Communications <MissionCommunications@lls.org>
Sent: Saturday, January 27, 2018 12:27 PM
Subject: RE: Discussion Board Platform

 

Hi Ted,

 

Thank you for sharing this feedback. As Trey mentioned on the Discussion Boards, we have discussed this feedback further with him. We are listening.

 

Please know that LLS is seriously considering all this feedback and intends to continue to enhance LLS Community. In fact, LLS will be posting questions on LLS Community to members in the coming weeks to gather feedback about the platform, and hopes that you and other Discussion Board members will weigh in. LLS plans to make changes, based on user feedback, so that it can better suit the needs of members.

 

Unfortunately, there are ongoing and serious systems and technical problems with the Discussion Boards, outside of the control of LLS. Our hope is that you, and other members, will join LLS Community, so we can work together to enhance the platform while preserving this community as place where you can continue to give each other information and support.

 

Please know that we are here for you, and I am more than happy to set up a call with you to discuss this further.

 

Thank you,

Dr. Gwen Nichols

 

Gwen Nichols, M.D. | Chief Medical Officer

The Leukemia & Lymphoma Society | www.lls.org

 

Sent: Tuesday, January 23, 2018 10:06 AM

To: Mission Communications <MissionCommunications@lls.org>

Subject: Re: Discussion Board Platform

 

Thank you for this response Dr. Nichols.  Please allow me to share a very recent post from the Discussion Board by a guy named Trey who has been active on this board for over 10 years and incredibly helpful to all of us with CML who use this format/site. Here's what he said:

 

Give posts titles.  Add a title block.  Without titles it is just a jumbled mess.

 

The "Search" function only searches on the stuff posted by LLS, unless the user clicks another button,  Not very intuitive.

 

Must separate the Member posts from the LLS posts -- need separate sections of the site.  Sorry to say, the LLS posts are generally useless to us, and they take up a huge amount of space with all the graphics.  And most are just ads for drug companies. 

 

This Community site is mainly a "push site" where LLS pushes stuff toward us.  That is not what we want or need.  We want and need a place to communicate with each other, not have LLS push stuff at us.  The LLS stuff gets in the way of the stuff we care about, which is talking to each other.  Sorry, but we do not want to talk to LLS.  We actually know more about this disease than LLS does.  We should be treated accordingly.

 

If our old posts are migrated over it will be useless unless they are searchable.  This Community site does not currently do that.

 

Ditch the Medvizor graphics, if not all their stuff entirely.  They are spam to us.

 

We almost never had a spam problem on the other LLS site.  Justifying this new site as protecting us better from spam is misinformation.   If the issue is cost, LLS is paying way too much for the Community site since they are getting junk.

 

Please understand that these are not my words, but I do share many of Trey's sentiments - the Discussion Board is a true virtual support group and the community site is not.  I live in Jacksonville Florida and there is no live support group he just for CML.  Please keep the Discussion Board if at all possible.  Thanks and best regards,

Ted

 

 

From: Mission Communications <MissionCommunications@lls.org>
Sent: Tuesday, January 23, 2018 9:48 AM
Subject: RE: Discussion Board Platform

 

Dear Ted,

 

We realize our Discussion Boards have become a place patients and caregivers rely on to find support and exchange information. We know how important this forum is for members, and are doing everything we can to preserve the discussions and aid in a smooth transition over to our new platform, LLS Community.

 

While we have relied on the technology for LLS Discussion Boards for many years, this technology no longer allows us to update the platform in a cost effective manner and maintain full control of its functions. Further, LLS Community better safeguards our community from inappropriate content and provides the ability to update the platform as technology evolves.

 

We truly appreciate your feedback regarding LLS Community. We will consider this, as well as feedback from other members, as we continue to enhance LLS Community.

 

Please feel free to respond with any additional questions or concerns.

 

Thank you,

Dr. Gwen Nichols

 

Gwen Nichols, M.D. | Chief Medical Officer

The Leukemia & Lymphoma Society | www.lls.org

3 International Drive, Suite 200 | Rye Brook, NY 10573

 

 

 

 

[Jan0080]

I too, received a note from Dr Nichols,  I am please that Scuba received a response from his note.  They are not just treating this as a PR issue.  I have requested a 60 day delay to solve our issues prior to pulling the plug.  I am glad that Trey is receiving appropriate feedback.

[campanula]

I received a note from Gwen Nichols, too - there is a lot of cutting and pasting going on at the LLS right now. 

 

Last night I signed into the LLS Community.  RED FLAG:  to sign up, you have to give your name, e-mail address and birth date.  This will show up for anyone to see when they click on your name, unless you adjust privacy settings.  To do this, click on the "gear" icon next to your user name in the upper right hand corner, and choose "Privacy Settings."  Enter "LLS Researcher" as the only person who will be able to see all information.  (I would appreciate it if someone would let me know if they can ever see more than "campanula" and "diagnosed" on mine). 

 

I also signed up for https://www.cmlsupport.org.uk/forum/1 and plan to use both sites for awhile.

[Buzzm1]

Each of the individual posts on this discussion forum have a unique URL address which allows them to be linked to,  another feature that is sadly lacking on the LLS Community forum.  

[M.A.]

So to sum up, although we want to work with LLS, they have chosen a crappy forum and not done user-testing on it.

[tiredblood]

Thanks for the info RCK. Will take a look at it.

[Red Cross Kirk]

Thanks for the info RCK. Will take a look at it.

Who's RCK, I thought?  Duh, it's me.

[Red Cross Kirk]

I received a note from Gwen Nichols, too - there is a lot of cutting and pasting going on at the LLS right now. 

 

Last night I signed into the LLS Community.  RED FLAG:  to sign up, you have to give your name, e-mail address and birth date.  This will show up for anyone to see when they click on your name, unless you adjust privacy settings.  To do this, click on the "gear" icon next to your user name in the upper right hand corner, and choose "Privacy Settings."  Enter "LLS Researcher" as the only person who will be able to see all information.  (I would appreciate it if someone would let me know if they can ever see more than "campanula" and "diagnosed" on mine). 

 

I also signed up for https://www.cmlsupport.org.uk/forum/1 and plan to use both sites for awhile.

You did good! We can't see much about you over there. Your status level is: incognito! You may want to unfollow the CML group if you want to be more stealthy. You can still read the group, you just have to find a Chronic Myeloid Leukemia link and click on it.

 

This is pretty much all that can be seen about you:

 

campanula

Member since January 2018

 

Looks like campanula has no story yet.

User Info Groups

• Chronic Myeloid Leukemia
• Welcome to LLS Community! Introduce Yourself.

[campanula]

Thanks for the feedback, Kirk!  I'm dealing with some real trust issues right now...   

 

Another strategy I have been deploying is to "print screen" some useful information from this old forum and send it to myself in an e-mail.  For example, I did that with my signature timeline - haven't decided if I want to share that on the new community yet.  So far, I am underwhelmed by this new option - but I'm trying to keep positive moving forward.

 

I have a feeling a lot of us might be losing touch with each other and I want to thank you all for such invaluable advice (and humor) these past two post-diagnosis years. 

[Red Cross Kirk]

Thanks for the feedback, Kirk!  I'm dealing with some real trust issues right now...   

 

Another strategy I have been deploying is to "print screen" some useful information from this old forum and send it to myself in an e-mail.  For example, I did that with my signature timeline - haven't decided if I want to share that on the new community yet.  So far, I am underwhelmed by this new option - but I'm trying to keep positive moving forward.

 

I have a feeling a lot of us might be losing touch with each other and I want to thank you all for such invaluable advice (and humor) these past two post-diagnosis years. 

I'm hoping we can keep our community together on the new platform, including all of our shared history contained in our posts.

[Trey]

All changes to Community are in the hands of Dr Saltzman.  I gave him my inputs by email and phone, and he is now working on changes.  He will migrate up to 3 years of old posts.  Some changes may appear sooner, but it may be weeks rather than days for most changes.  So in the meantime people need to migrate to Community.  Or go to one of these:

 

https://www.cmleukemia.com/forums.html

Edited by Trey, 27 January 2018 - 08:03 PM.

[Buzzm1]

Dr Saltzman will migrate up to 3 years of old posts. 

Migrating a volume of posts from this discussion forum, without the Invision software to navigate them, will only result in a wasted effort, and a large pile of garbage.   A better idea would be to leave this forum intact and searchable until the new forum reaches a level of capability where this forum is no longer needed.

[Red Cross Kirk]

Migrating a volume of posts from this discussion forum, without the Invision software to navigate them, will only result in a wasted effort, and a large pile of garbage.   A better idea would be to leave this forum intact and searchable until the new forum reaches a level of capability where this forum is no longer needed.

Buzz, that does seem to be a very reasonable idea.

[IGotCML]

Thanks for the feedback, Kirk!  I'm dealing with some real trust issues right now...   

 

Another strategy I have been deploying is to "print screen" some useful information from this old forum and send it to myself in an e-mail.  For example, I did that with my signature timeline - haven't decided if I want to share that on the new community yet.  So far, I am underwhelmed by this new option - but I'm trying to keep positive moving forward.

 

I have a feeling a lot of us might be losing touch with each other and I want to thank you all for such invaluable advice (and humor) these past two post-diagnosis years. 

I am searching for pages in the forum that have information that is relevant to me and I am saving them on my PC as HTML webpages. Same idea as yours, just a different process.