New Decision regarding posting events and products

• By bluestar30
• Posted March 31, 2009 at 11:00 pm
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I am not sure what all the fuss is about. I come to this site to learn everything I could about LC, and wish I had it while my dad was still around. When my mom got sick, I struggled again trying to learn about her cancer...and found this site when it was too late.

It takes a very long time to figure out what's going on when your loved ones get sick. The doctors don't tell you very much, and they can often waste your time. It is impossible to figure out things on the web without significant time investment, and I found myself taking care of my folks all day long, and then up all night trying to figure things out. As I said, I wish I would have had this site while I was going through the worst nightmare of my life in losing my parents. I would have loved being able to offer more information.

I have always been of the mind that people are smart enough to figure out what is junk and what is not...I am not a huge fan of too many rules...Cancer is bigger than all of us. Trying to manage people who are scared, who are looking for information, comfort, meaning seems almost as hard as managing cancer itself. Why not just let the site take on a life of it's own...so far I have never seen anything that annoys me...except new rules. Don't you just hate rules? I thought there was a rule that my parents would never die young...and look how that went.

To all of you, a sweet night, there will be a cure sooner than later. And for all of those who feel sick tonight, there is tomorrow, and that's where hope lives for all of us.

BTW, yesterday was my birthday, my first one without my parents, it felt as if I lost them all over again.

Chris

• By rmhayes
• Posted March 31, 2009 at 12:48 pm
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You might be interested to know everyone that the person who was advertising so diligently to contact so and so....is gone. This person joined and with the first post to the lst post it was all bout you should try this. Person had a "story" but never asked questions...just replied with the "ad" and the link. Those were the posts that bothered me the most.
robin

• By Bette_Tx
• Posted March 30, 2009 at 1:44 pm
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Thank you very much for this new decision. One suggested 'we' should be the one to make the decision to decide what is a solicitation or marketing product and/or snake oil treatment.

That might work fine for some of us veterans who've been here a few years. But for a newbie to lung cancer who comes here, scared to death, and hoping for an immediate cure, those type of posts could be dangerous. Also this website is free to all of us and should not be used to promote the selling of a product from another website.

Thanks for all the LCA does for us.

Bette

• By Toddy
• Posted March 30, 2009 at 12:01 pm
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Speaking just for myself, I don't think enforcing a standing rule is about censorship, it's about a clearly marked (sponsored message board) having rules in place by that sponsor, Lung Cancer Alliance. To the best of my knowledge the rules have always been in place and available for anyone who wants them. They were in place in 2006 when I joined. The fact is that LCA maintains and supports this site as a service to those who want to use it along with help and technical support from team inspire, it's not something they have to do.

There are other LC boards, many of us visit several, most have guidelines and moderators too. It would be sad to see people leave over this, I for one don't want this site to go away and I understand that it's here for all of us at the behest of LCA.

• By Munker
• Posted March 30, 2009 at 11:07 am
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I'm with joyner4u. I think this is censorhsip. My god, so there is a company that is going to make money on a nailpolish but at the same time create awareness about LC. We should jump on it. No matter what retail store you go in to there is PINK represented and I am certain lots of companies have gotten rich but who cares as long as our cause gets out there to as many people as possible. Folks still don't know the ugly facts about Lung cancer and it is imperative that we use whatever vehicle necessary to get the word out. I posted the information on Facebook and have already received numerous emails from people that did not know the stats on Lung cancer and who are going to spread the word to family and friends. Everyone has the freedom to make choices wheter it is hitting the delete button or making decisions regarding treatment but we don't need big brother telling us what is/is not acceptable - that is what I find offensive.

• By Joyner4u
• Posted March 30, 2009 at 2:01 am
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You should never take away our learning tools,such as we find ,( OR FOUND ) ON THIS GREAT SITE. iF IT HAPPENS ALL I CAN SAY IS THAT IT WAS NICE WHILE IT LASTED.I WILL BE LOOKING FOR ANOTHER SITE. I SPENT ALOT OF TIME PROMOTING THIS SITE BUT ALL FOR NOT.Sey,a,nora..Jack Joyner

• By TeamInspire
• Posted March 27, 2009 at 10:51 am
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Lee,

Inspire is upfront about all the things you mention. All of our guidelines, principles, privacy policy, terms of use and other helpful links are at the bottom of every page for easy access.

Also, note that we do not automatically remove posts about alternative treatments, when they are obvious promotions or ads, we do. There have been several discussions here about alternative treatments that continue to go on.

Hope this helps clarify.
Beth, TeamInspire

• By jgaynor711
• Posted March 27, 2009 at 10:14 am
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Thanks for clarifying, Amy. That helps. I'll post any event or advocacy info to that other events section.
Julia

• By Chi-Dreamer
• Posted March 27, 2009 at 10:10 am
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Sounds pretty simple to me. We can still chat about our trial and tribulations, what works or didn't work and check the link on the right for events and fund raisers.

I think this discussion has run it's course.

PS. Had 2nd treatment yesterday of PDX (trial drug) first CT follow up will be end of April. Also met a fellow poster on this site who also goes to Northwestern. So great to meet someone face to face.

Wishing everyone a Great Day!

Linda

• By amymaura
• Posted March 27, 2009 at 9:53 am
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Hi Julia,

The link to the right was not always there on the right, but it has always been on the LCA website. We put it there when we decided that we were going to start enforcing the rule because we felt it was necessary to have a place for people to post awareness raising and fundraising events.

It's all about context. This community is to swap tips on what helped you or your loved one through lung cancer. If a product such as a cream or shampoo helped you to deal with a side effect, great. Post it. Don't post the link, but post the full name of the product so someone can talk to their doctor or pharmacist about it or look for it if it suits them.

Post the scientific breakthroughs and the links to the articles discussing them. That's not marketing or solicitation. That's information.

As for the fundraising/awareness raising events, those will not longer be allowed on this site, which is why we opened up the link on the right. So if the Mass. chapter of LCA is having an event, it cannot be posted here. It CAN however be posted on the LCA events page. And the link is there so that anyone who wants to see where events are going on can click and read whenever they want to. In a way, if you think about it, this helps for events to not get lost amidst the posts on this website. It's a streamlined place for them to be "held" and always available and visible until the event has been held.

Hope that clarifies.

And to everyone, I will not be answering anymore questions about this online, but please feel free to email me at apearson@lungcanceralliance.org if you need more clarification about this.

Thanks,

Amy
LCA

• By jgaynor711
• Posted March 27, 2009 at 7:23 am
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I have to admit, I'm pretty confused about this rule now, not less. I might be dense, but please can you help clarify?

So it's ok to post about different treatments, supplements or shampoos or even nail polishes that might financially benefit a corporation as a result of us purchasing them - as long as we don't include a link to the website?

What if we read about some scientific breakthrough in a news item or a new clinical trial? Can we mention that and include a link? For instance, i read an article yesterday about how the woman Obama appointed to lead health care reform lost her mother to lung cancer. Info like that gives me hope and I was going to share it with the community. Would I be able to, and with a link to the article?

And does this apply for awareness building events or fundraisers as well? So, for instance, if our local Massachusetts chapter of LCA was gearing up to start planning our annual candlelight vigil (which we are) and wanted to let any local folks know that they could be part of the planning efforts, could I mention that here - and just ask people to contact me via email or this site? Or if I was planning a local 5K run to support lung cancer and wanted to see if anyone wanted to help organize it, could I mention that here? I would never actually solicit for donations on this site, but I would love to let people know about local advocacy opportunities.

Until you mentioned the "events" link to the right, I'd honestly never noticed it before, so while you are providing the forum, it's not as prominent as this discussion group, and in that sense, it's much less effective.

And yes, I know LCA does a lot of grassroots advocacy work. I'm one of your grassroots advocates!
:)

I'd love to have that info clarified. Thanks!

Julia

• By Lee
• Posted March 27, 2009 at 4:46 am
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It's understandable that people are confused every time one of these new "rules" appears. "Inspire" does not make it easy for you to understand where they are coming from. The information about "inspire" is hidden somewhere on this website but even I can't remember where. I believe it should be prominently displayed; hiding it is much like the behaviour of the people who come here pretending to be like you and me when their true agenda is to sell a product.

1) Inspire is a BUSINESS. Their first priority is profit. I suspect many people do not realize this. I'm constantly seeing posts that lavish praise on Inspire employees for all the good and wonderful work they do for us. Yes they do a good job - that's what they're paid to do.

2) Inspire's clients, both directly and indirectly are pharmaceutical companies. Again, I think this should be prominently displayed but it is not. Once you realize where the money is coming from, the reason behind many of the "rules" becomes apparent.

3) WE are not clients, we are Inspire's "product". However, it is necessary to keep us "happy" because if everyone left the board, Inspire would have no product to sell.

I am pro-business. The thing about 1), 2), 3) that bothers me is Inspire is not upfront about it. Otherwise everyone wins: Inspire makes money, the pharmaceutical & spin off industries make money and we have a fine (and cost-free) meeting place where we can make friends, find support and discuss certain subjects. If you want to discuss "alternative" treatments you would be better served elsewhere. I don't even try to talk about it here. The first response almost seems scripted and is invariably negative. And those who persist are eventually banned from the board. If Inspire made it clear who their clients are, people would understand why only a brief discussion of non-pharmaceutical treatments will be tolerated.
I admit I was somewhat perplexed by the ban on announcing fundraisers on the board. But I note that Amy's last post included a little promo (including a contact name & address!) for the fundraising group they are affilliated with. Perhaps they don't want money siphoned off to other groups.

Lee

• By bayrealtor
• Posted March 27, 2009 at 1:05 am
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Ahhhhhhhh dear Robin,

Thats me your talking about (China and censoring) and I meant every word. I was of the understanding that we could not talk about our issues such as a rash and how we solved them. Example I used was the tarceva rash. The folks in power here have explained more clear what will and will not be allowed and I am in complete agreement. At the same time.......If I see something I'm not sure about or perhaps dont like I will always want the opportunity to decide for myself instead of having others decide if I can even have access to the information.
Based on the posts above, I think the majority of foks here feel exactly the same way.
Love to you as always....just wanted to give my opinion again as you made it a point in your post.

• By rmhayes
• Posted March 26, 2009 at 8:57 pm
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in reply to those that are comparing this site to china and censoring: they are adding a link on the side for those that want to advertise their useful info...but i have found a couple of people who came to this site and having just joined starting advertising for a "cure" no matter what post they were answering to. wasnt just one certain person ive noticed it with a few and i had never seen these same people post before on any subject until they signed up and starting out selling a product. and ive not been here long just every day since august and i never saw them before the advertising post. i found it worrisome to say the least and im sure im not the only one. you have offered valuable information ray and several others but none of the regulars have posted anything but latest news or things like gels for the itch, rash, nausea med. u havent given a link and said u should try this it "cured" so and so....youve given valuable information when you tell what works for you. theres a difference in offering advice and being a part of the community and than joining to act like your part of the community to gain trust and then start telling you about this great cure. believe it or not this has happened. and if ya'll want to try anything when all else fails..i can understand that..thats why they (the modulators) have provided a link just for those who want the advertisement.
robin
robin

• By rmhayes
• Posted March 26, 2009 at 8:46 pm
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that was one of my main concerns as well: what works for one mght not be right for someone else and should never be taken or used without talking it over with your physician. i didnt find the kind of info marylou was offering bothersome but there seemed to be more and more "commercials" happening on here.
robin

• By rmhayes
• Posted March 26, 2009 at 8:38 pm
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I for one am so glad that it will no longer be permitted for someones cure to be posted on here. I do not like nor do i appreciate some of the "commercials" i have seen lately. I realize though some people do so at the same time i am glad they will have a place to post but not on here. tysvm.
robin

• By amymaura
• Posted March 26, 2009 at 4:52 pm
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Hi Jodi,

I looked back at your post. You did not tell anyone to buy the OPI polish and you did not include a product website. That is absolutely not a problem.

Amy
LCA

• By jazzbo
• Posted March 26, 2009 at 4:31 pm
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Hey , you know every once and awhile we all need to get our blood pressure up. I truly believe it invigorates us and keeps us on our toes. Information is great thing to have and its a great asset also. The policies are here tohelp us not to limit us. I think we can get used to not using links and as Amy says if someone wants to post about something great just don't put the link. As far as mentioning that you were o are involved in a program, Great. Mention it and that is that. If we want to know more we have to go to the LCA website and post it under events and find it. No big earth shattering idea. Maybe by doing that you might get more people to see it. I know when I first came on here I was on the LCA site and followed a link to here. Enough said by me unless my blood pressure goes up again. I make no promises. lol- John

• By MarionW
• Posted March 26, 2009 at 3:25 pm
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I just want to thank you all for the work you do to provide this site to us. when I was diagnosed, I had no where to go for support. This site has helped me and I have tried to post when I think i might have some useful experience and hope to share.

Thank-you for being concerned about what is posted here. You can never win in these things and please everyone. I trust you all to be be caring and diligent in ensuring the value of the site is preserved.

Thankyou again for all you do.

• By jmichelle
• Posted March 26, 2009 at 2:35 pm
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Hi Amy,

I have a question regarding this policy and hope I'm not being repetitive. I scanned the replies and didn't see what I was looking for specifically.

I originally made a post regarding the OPI nail polish ad campaign. I was not asking people to buy the polish or anything like that. I just happened upon the ad.. noticed it was about lung cancer awareness... got excited and wanted to share the good news with everyone here. Are you saying THAT is not allowed either? I just want to be clear on this. I see no harm in making people aware of companies that support our cause... that's all I was trying to do in my specific post.

Thanks,
Jodi