129 replies to this topic

[Trey]

L&LS has put a link on the top of the Discussion Boards regarding "Get Ready for LLS Community".  It can also be seen here:

http://community.lls...-lls-community/

 

https://communityvie...yeloid-leukemia

 

I have looked at the new site and am severely disappointed.  I asked if it will replace this current Discussion Board, and the answer was "Yes". 

 

The new site is set up pretty much like Facebook.  It is a social media format.  It is disorganized, random, and cluttered.  Here are some of the comments I sent to L&LS Admin:

 

Overall the site is cluttered.  Too much stuff we don't care about.  It seems this new site is trying to offer too much information when the user wants to control what is seen to reduce the clutter.  In the future when a lot of users are signed up this clutter will ,ake the site even more burdensome to use.  The simple listing of discussions with most recent ones first works very well on the existing L&LS Discussion Board. 

On social media sites the clutter, randomness and disorganization may work.  The social media model does not work for a Discussion Board.  Social media format is not the answer for every website.  It certainly does not work here.

Overall assessment:  Cluttered, random and disorganized, this new site breaks all the features that make the current Discussion Boards work well.  This is not social media -- that concept is a failure here.  I give this attempt a D- grade.  Starting over would be a very good idea.  Better yet, leave the existing site alone. 

Remember who your audience is.  We are an average age of about 55 years old.  We did not grow up with social media.  We would use social media if it worked better, and we could set up our own apart from LLS, but we don't want a social media concept.  We are your CUSTOMER.  We are grateful that you have provided the existing LLS Discussion Board since 2009, and an earlier version before that.  It works very well for us.  It has greatly benefited many hundreds of people looking for help.  This new site will not work well for us, and it would be a disservice to LLS patients everywhere.  So if you care about us, you will NOT implement this new site. 

I don't mind new as long as it is better.  I also don't criticize just to criticize.  This site is not better in any way we patients care about.  It breaks just about everything that helps patients on the existing Boards.  I don't see the point in making such a large scale change to the highly successful L&LS Discussion Boards which have helped so many patients over the years. 

I wish I could say something more upbeat, but that would not reflect my opinions.  This new site is a disaster.  My suggestion is that L&LS should keep the existing Discussion Boards and add this new site for whatever new purpose it intends, which frankly I don't see what that is.  Maybe someone could explain it to me.

 

So that was my input to L&LS on the new site.  They apparently intend to implement this within a few weeks.  So sad to see L&LS destroy something that has been so useful for L&LS patients. 

Edited by Trey, 20 January 2016 - 10:27 AM.

[soundoff]

Typical of LLS not to care.
The chat is the same BS the moderator has no clue of the 1st amendment. Trey I'll back you up and make some phone calls tomorrow. I'm tired of the BS.

[Harper3994]

I am new to the forum and asking please do not change anything. It is so important for all of us to be able to have consistency. We have had enough changes in our life..it's called CML.

[rcase13]

It is good as it is. A better search engine is all it needs.

[Tucker1]

I never use a social media site just as Trey said they are too cluttered and you have to wade through a lot of stuff that is useless and annoying. I like the site the way it is, why did they decide to change it?

[r06ue1]

I too am not a fan of the social media format, love message boards but it seems they are going the way of the Dodo.  Impossible to find any useful information on the social media pages, cluttered with garbage.  I do use Facebook but the only reason is to keep in touch with old friends and schedule get togethers with family and current friends.  I doubt any amount of complaining will change their minds though.

[rcase13]

I agree I doubt there is anything we can do. It is too bad. This has been a real valuable tool to have in helping deal with my CML. Trey, thanks for speaking up for us.

[hannibellemo]

I have tried CML sites on facebook and find them impossible to have a discussion. Everyone's comments are out of sync and I never know which comments go together. As was said earlier, if I wanted that type of website I'd use facebook. That's why I come here, instead. 

 

I foresee the end of my beloved discussion board if they move forward with this.

[rct]

Yeah.  Won't that be great first time someone here walks into a meeting they drug themselves into work for and some joker says "hey is that you on that lymphotosis or whatever it is facebook I saw the other day?".

 

Should go well for everyone.

 

FACEPALM.

 

rct

[missjoy]

Patients and their families are the users.LLS should meet its users needs and listen to its users. Can we do something to stop them from implementing it?

[blueheron]

The new site is a solution in search of a problem. It's very sad to see these boards go by the wayside. My status right now is PO'ed!

[Harper3994]

I have been relying on this site since I was diagnosed and really need it since doctors don't have time to explain things. Please leave as is. I am not on Facebook...don't know how to use a lot of this social media stuff.

[Buzzm1]

like Facebook, the new site will try to pick up every bit of marketing information they can.  don't divulge anything.  

[Kali]

I am fairly new to this site but had read it since my diagnosis the summer of 2014. This site and Treys blog are the only two things that helped my fears, my grief over this diagnosis and gave me hope. The information I learned was so valuable because my onc told me little to nothing and it was this board who gave me a wealth of information. This board is very user friendly and made it simple to get information. That meant a lot to me with all the stress and lack of energy. The reason I took so long to join was because I am a very private person and only my family and 3 friends know I have this disease. I used to have a Facebook account and got rid of it because of no privacy. I don't like social media. Not sure why they want to go to a social media website but that would be horrendous. Is our discussion board not sacred? If it is not broke why fix it? confidentiality is sacred. I do not want myself or anyone to feel vulnerable in sharing information and having discussion on here. A social media format would be a disaster for several reasons in my opinion. we live in a society that likes to broadcast everything about everybody. I believe our health is something that we can be private about but also network with one another to provide support and help. The agenda of social media is the opposite of protecting our privacy.

[Kali]

The more I think about this, I will bet money is driving this change. Maybe they think a social media format will generate more donations. Just a thought since money drives the world we live in.
The social media format is a bad idea anyway you look at it for us, the patients.

[Red Cross Kirk]

I agree!  Please leave the discussion forums as they are.  As far as I can tell, they are working fine as they are currently configured.

[Dona_B]

To the Administrators and those in charge:

I agree. If it isn't broke don't fix it. There are many sources of information on the web today. Here the information is user friendly and easy to understand. It's easy to check back on a particular thread for recent comments. And we can control how much personal info we wish to share.

 

Social media is good for general topics of interest but discussion boards work best for specific issues like health concerns, car issues, pet breed concerns, etc....

[Buzzm1]

the "Contact Us" button: http://www.lls.org/contact/contact-us

[kat73]

I agree completely with everything Kali said (and, see, you can just scroll up and read it again, easy). I have gotten more real help and information here than I ever have in six years gotten from all the doctors put together X 3.  And, like radio instead of Pandora, I never know what I'll find here - but it will be interesting and generate thoughts - with the bonus of sometimes being able to help someone else.  I don't do Facebook and never will.  Can't understand the appeal, for the life of me.  I'm too old and I like my privacy.  Even if the privacy loop were somehow closed, it's still not REPLYING to what someone said - you know, like a CONVERSATION.  It's like the difference between a billboard and a letter.  I agree, it's probably about fund-raising, but I also suspect it's because LLS hired a millenial to be cybermedia director and he/she was horrified to see how out-of-date we all are here.  Naturally, someone who does NOT have CML would NOT get it!  But, aside from jokes and some personal anecdotes, we don't come here to party, you know?  Can we sign a petition or something?  Can we deputize Trey to carry the sword?  Can we re-form ourselves in some other format so we don't lose each other?  I don't know what I will do - on my grimmest days, at least I had this.  I don't know how I will go on alone.

[SUE]

This forum is absolutely essential for us.  The knowledge and experiences shared and the questions answered have enabled me to understand my disease and to intelligently discuss my treatment with my Oncologist.  Also, as kat73 says, we have the emotional support and closeness from our fellow CMLers that is so necessary to help us cope.

 

If LLS takes this away, we must figure out another way to continue our forum.

 

Sue