129 replies to this topic

[Buzzm1]

get the rope ... 

[scuba]

Interesting ... I agree with Trey. Now I am concerned.

 

Hopefully LLS is taking our feedback to heart and will postpone or abort their planned move from the current structure to the new one. If not - Perhaps an alternative discussion board can be set up so proper thread control and topic titles can be continued.

[missjoy]

I wonder how useful the information LLS would gather from the discussion board. LLS could get all information needed if oncologists and hospitals report and share information with research institutes. We,users only post isolated information regarding questions asked. We do not need the latest technology but a place to get support from folks who have similar experience. Whoever pays for the service does not change the reason why the board exists .

[xGunner]

It appears that you have to be completely registered in order to see any of the posts.  Given the nature of the required fields, you need to be prepared to either have a throw-away email account to catch the likely spam that will come forth, plus they are asking for a lot of information that many folks should not be posting without considering the potential impact.

 

Newly diagnosed folks are looking for information about how to deal with CML and what to expect. I'm not sure I would jump through the hoops plus give up all that information without ever seeing what is on the boards.

[MarCap73]

I just want to come to a site where I can learn more about what other CMLers are going through, search through various prior posts about topics relevant to me and maybe add my 2 cents once in a while.

 

I think that sums up precisely what most of us are looking for! 

[MarCap73]

I received an email response as well stating. " I would very much like to speak with you concerning your insights as well as sharing with you the bigger picture of what is planned."

 

An update: I didn't speak with LLS but sent a response to them along with my opinion on the new site.  I received a second reply thanking me and stating "thank you so much for your review, thoughtful comments, and constructive critiques.  We are going to take these to heart and will do our best to accommodate all the suggestions we received."

 

Additionally, I was provided with a link to a YouTube video meant to provide a high level overview of the direction they are going in. The link is to a power point video being narrated by a staffer.  It's an unlisted video as of right now so I am not going to post the link.  I don't want to stir the pot too much (yet) and be banished to the The Discussion Board Penalty Box by LLS.  It will be public soon enough, I think.  

 

Just commenting on one slide here (The Privacy Statement) and when you see the video yourselves, note this.

•  "The more you share the more we can learn and drive change." 

•  ​"We will store the information you chose to share in a safe place".  (Well that's not a very convincing statement... Target said the same thing.)

• "The info may be used to provide you with personalized information."  

• "We will never conduct scientific research without getting your consent"  (After hearing that said on the video I am even more convinced that LLS is doing nothing but trying to grab personal data for it's own purposes.)

[Trey]

L&LS has heard our inputs and has decided to keep the current Discussion Boards open.  They will open the second site and see if it is useful for some purposes.  This is great news and shows us the L&LS is supportive of our needs. 

 

Quoting the L&LS response to our concerns:

 

"LLS has taken your input to heart and has decided to continue to support and allow current and new users to post to and review posts from the current discussion board site.  The URL will stay the same.  In essence, we heard you, want to support you, and are committed to doing so. 

Having said that, we are still planning to release the new Community site beginning Feb 1. As you can understand, some folks have different needs and interests and we want to provide options.  A constituent can choose to be a part of the current discussion boards, or the new Community, or they can join both or neither.  The choice is up to the person.

We will, of course be monitoring both sites to provide support on each."   

 

So all is well, and we are GRATEFUL to L&LS leadership for stepping in and making an excellent decision which benefits the Patients. 

[scuba]

Very good - they reached a correct decision.

[Kellyb333]

I am so grateful!!

[Kali]

Thank you LLS for keeping this discussion board. This means a lot to us!

[soundoff]

Great news

[kat73]

Whew.  Thank you Trey and everyone else who helped bring about this very sensible outcome.  I didn't post because I am too computer-ignorant to even evaluate or critique - I am so grateful that there are better heads than mine who spotted and delineated the inherent flaws in the new approach.  To lose this place, operating the way it does currently, would have killed my spirit.

[mamawarrior]

Thank you trey for informing us on the transplant forum of the proposed changes so that we could voice our opinions as well. We have some really sick folks, relapsing and going through chemo again,  that are in no position to express their opinion, let alone learn the ropes of a new forum. Heck some are probably finding it very difficult if not impossible to post a few words right now. But hopefully when they are better, they can find their way back to the forums, see their notes of support, instead of wondering what the heck happened and where did the site go. 

 

So glad that LALS heard our concerns. 

[roamingdoc83]

Whew!

Contemplating "ruining something great"... even in the face of so many complaints... (hmm, sounds like our government)

 

Glad they listened, glad they are keeping the current format. BE ON THE LOOKOUT for anything that might change in the 'background!'

 

Good JOB Trey!

[Red Cross Kirk]

I was curious how things were going on the other "discussion" page.  It sounds like things aren't great for people who've been away for a while and want to reconnect with us.  I sent a message with a link to this page to vwoyak.  Hopefully they'll get it and check in back here.

 

I copied some of the interaction vwoyak had with LLS staffers and pasted it below.  I guess they don't want to refer old timers back to this page.

 

 

vwoyak

in

Chronic Myeloid Leukemia  

4 days ago

 

Wow! I have not been on here in a very long time and things have really changed! I hope to reconnect with some old friends (as soon as I figure out how to find them) and make a few new ones as well. I think I will be doing a bit of lurking until I get the hang of this new set up. In the mean time, hello everyone!

 

May  

2 days ago

 

Hi vwoyak, welcome to LLS Community!

 

vwoyak  

2 days ago

 

thank you May, but I will be unsubscribing. I do not see how the new "facebook" format is conducive to the free flow of sharing between members on specific topics/questions/ideas that it once was. I feel I can be of more help to those just beginning their journeys on other forums.

 

 

vwoyak  

4 days ago

 

Hadn't been on here for quite a while. Not what I was hoping to find. Appears to be great for anyone newly dxd and seeking articles, etc. but no longer really set up for "chatting" with your peers or sharing experience and support as it once was. I look at the dates/times on the comments and it's one here one there. Reminds me of a small group of individuals trying to communicate with one another from different corners of an empty auditorium. Since this no longer offers me any more contact, info and updates than I can get from my email inbox, I am going back to my other groups. At least now I understand the feedback I was getting from the "new" folks I was routing here. I will be eternally grateful for the love and support I received on the old site. The beginning of my journey so many years ago would have been so much harder without all those great folks who selflessly shared and offered a supportive hand and later gave me the opportunity to "pay it forward". Why am I left with the feeling like an old friend had passed away?

 

Julie14  

3 days ago

 

Hi vwoyak welcome! FYI you can join your forums of interest in the Groups tab up top, depending on who you would like to chat with. Thanks for being here to support others!

 

 

 

[VickiW]

Hi Kirk!  thank you so much for the link!  There is no way I would have otherwise known that the original forums still existed 

Already seen some familiar names.  Great to know they are still here.  I am sure that I am not the only one who is grateful to Trey for much of my early education.  Thank you once again, now I am off to find some more old friends and see if I can make a few new ones.

 

eta;  noticed much of my original profile info is missing (20 posts, really?  I was a total chatterbox but then a lot was lost when they did the previous "update") At least they didn't delete me completely 

[Red Cross Kirk]

I'm glad you found your way back!  I wonder why the LLS folks didn't mention that we're still here?

[MarCap73]

I got an email from apparently one of the site admins today:

 

-----------------------------------

Hi XXXX,

 

Thank you for your support on LLS Community! I wanted to reach out to confirm the birthday question on your profile, it states as 12/25/1900, age of 115.

 

Best,

 

XXXX

-----------------------------------------

 

This raises an alarm in my mind and one of the concerns I had brought up, it comes across as a grab to gather as much personal info on users as they can, build profiles on users, and target marketing.  

 

Ummmm, yeah....I am 115...  

[Antilogical]

Congratulations on reaching such an advanced age, MarCap.  You don't look a day over 73.

[rcase13]

These TKI's really work. I'd be thrilled to make it to 115! Who knew that the drugs not only hold back CML but they actually extend our lives beyond the normal lifespan. Awesome!