New Member
Posted 08 September 2009 - 10:32 AM
I posted a full comment on the Discussion about the Board section, so won't repeat it all. My question was simply whether anyone from LLS ever tries to connect with those who leave the discussion boards abruptly. As we all know, several former contributors no long visit the CML Board, and I was just curious if anyone (administrators or whoever) ever tried to reach out to those folks and ask that they return or question them about what made them stop posting?
Thanks,
-janekaye
New Member
Posted 09 September 2009 - 09:27 PM
I used to be a regular poster on the CML boards, but since they have switched to this new board, it is hard for me to follow. The other board was easier for me to find things on. Also, I can only view the board on my home computer, for some reason it is blocked at my work. So I can't even view on lunches or breaks.
New Member
Posted 09 September 2009 - 09:39 PM
I agree with CML Survivor. I read the boards occasionally, but seldom post since changing to this new board. I find it difficult to navigate, very slow and frustrating! The old board was much more 'user friendly'. Hopefully those 'in charge' will hear us and make some changes to accommodate us.
Many thanks to those who take the time and share the helpful information! (That's you Trey, and others)
Carole
Advanced Member
Posted 12 September 2009 - 08:26 AM
I know that Trey has mentioned other discussion boards, do you, Carole and Jane, use other sites now? Trey, do you have a list you'd share with us?
Pat
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
New Member
Posted 12 September 2009 - 08:38 AM
It isn't just the CML board that is missing former posters, it seems to be on all the various boards. The opportunity to share our treatment experiences isn't so easy anymore.
Don't know about anyone else, but the changes were very hard for me to deal with. It used to be so easy to check in quickly to see if someone replied to my posting, or to see if someone else in treatment had posted about their own situation. I tried having the e-mail sent with there was a reply but it filled up my e-mail box too fast & that wasn't working.
I feel any new people coming here are very reluctant to post when going to the 'Living with" sections because those aren't all that active. And personally, if I posted for help, and my post sat there for a week or so before anyone 'found it' I'd be hurt and never return.
The LLS really messed up on this one.
Sorry to know you are feeling the same sense of loss I've been feeling as well. Too many of us feel this way. And too many have left completely. People I began to feel I could count on to help me when the old chemo brain wasn't working, when I was feeling down about the latest test results, people who 'got it'. But I guess I'm preaching to the choir here, you know the feeling all too well.
New Member
Posted 13 September 2009 - 02:10 PM
I am new, joined in May, but don't think I posted then. My first post was yesterday, Don't know how it used to be but,
I do know " it's the squeaky wheel that gets greased"
1st
Get list of people with ability to fix this and their email, phone and ext.#s, and snail mail.
Not just one person, i.e.
1. person in charge of this site
2. person in charge of customer service
3. person in charge of outreach, publicity
4. person in charge of donations,
5. And all their bosses
6. the Board of Directors or equalilant
2nd
Move this up from CML to Main thread, get more people involved
3rd
each one list main problems and changes you don't like, suggestions of what you want fixed, that wil help us all not forget something,
send individual emails which works better than a form version.
4th
anyone with contact info of people who have gone missing can send them list of email addresses and ask them to contact the "powers that be" and tell them why they have left and what they have lost because of it.
Why I care since I am new and lol, have no clue "how it used to be",
well, beside obvious connection with people with this disease, I have dial-up and old computer and I can't tell you the # of sites that have made changes and are just too slow and hard to deal with in last few years that I just dropped. And another thing, what is it will all the dark backgrounds, and dark sites that I can't even see? the Sprycel site for example
I'm sure a lot of you have more and better suggestions,
so, take it away . . . . . . . . . . .
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