"FACT CHECK" flag?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2011

    Athena, why would you report my post and not elmcity,s. Are u taking sides ?

  • Kathy044
    Kathy044 Member Posts: 433
    edited August 2011

    thenewme, thank you for your post.

    Instead of flagging individual messages, do you think it would help if every talk page had a link to the BCO general site search instead of just the talk search? Then responders could refer readers to BCO information if needed without judgement.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2011

    RB, thank you for your post :)

  • thenewme
    thenewme Member Posts: 1,611
    edited August 2011

    I deleted my post.  I'm GONE. 

    *****NOTE TO MODERATORS, PLEASE DELETE MY USER NAME AND ALL POSTS.  I NO LONGER WISH TO BE ASSOCIATED WITH THIS SITE.  I HAVE NO TIME OR INCLINATION TO WASTE MY TIME ON A FORUM WHERE FACTS AND RELIABLE INFORMATION ARE NOT VALUED. *****

  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited August 2011

    thenewme, if you are seriously looking at a message board for credible and reliable medical information, than you are in big trouble.  If you worked for Apple, would you look to your coworkers around the water cooler for credible and reliable information about what Steve Jobs is planning to do with the company?  

    No, you look to them about their experiences working for the company or maybe what TV show they like.  This is just a big water cooler, with the common thread being cancer.

    All this board - or any message board - is a collection of people to share their human or personal experiences.  I'm sure there is a board for doctors out there somewhere if you want credible medical advice.

    Unlike many, I don't think women here or anywhere are incapable of making their minds up.  Yes, some may be desperate and fall for snake oil - and how has that changed since the beginning of time?  Some people are just gullible.  Because they are though, you will not be able to talk them out of it, so why even try?

    The only way the moderators can control what happens on a busy board like this is to decide not to have the bulletin board section of the site. I know, for I'm a mod of a busier board than this one. It is completely impossible to read every single post and then decide which one is medical opinion and which is personal experience.  

    And, all those cut and paste posts sound horrible but I bet you could take any sentence of mine out of context too and make me sound like I'm giving terrible advice.  

    Well, maybe I am but everybody here is a big girl and can ignore me or not.

    For your own peace of mind, I suggest you do as I do:  stay far away from the alternative section, and let those who want to believe that stuff believe it, and use the ignore button liberally.

    People are all grown-ups.  Let them make their own decisions.  They do in the great big world when you aren't around and they will here on this forum too and I have found that you rarely educate people when they want to believe something.

    If everybody would just let everybody be, then this fighting would stop.  Let the alternative people believe and talk about what they want and the rest can all stick in the realm of science.

    Mods:  Maybe this whole thing would be solved if you separated the alternative and complementary sections.  Do a "holistic/alternative" forum and a "complementary" forum with a good description of each, and then immediately begin to ban anybody who posts flame-bait on either side.  Maybe after a few bannings, people will let each other live with their own beliefs and stay in their own areas.

    Even that probably wouldn't work because bottom line?  People like to fight and feel self-rightous. 

    Now, I'm out of this thread, didn't mean to get sucked into the midst of this war, I find the entire thing pretty childish.  My SIL died of cancer this morning, and I can't help but think I'm next and this is not the way I chose to expend any more energy.

  • River_Rat
    River_Rat Member Posts: 1,724
    edited August 2011

    Hillck, that would be a solution and it doesn't sound to hard to incorporate.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2011

    Thank you Coolbreeze for your most eloquent post, my sympathies to you and your family

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2011

    Ciindy - great idea!  Can't imagine what Patzee's post has to do with thenewme's suggestions...

    eta: Mods:  Maybe this whole thing would be solved if you separated the alternative and complementary sections.  Do a "holistic/alternative" forum and a "complementary" forum with a good description of each, and then immediately begin to ban anybody who posts flame-bait on either side.  Maybe after a few bannings, people will let each other live with their own beliefs and stay in their own areas.

    THANK YOU THANK YOU THANK YOU THANK YOU - many of us have been asking for that for a LONG LONG time....

  • thats-life-
    thats-life- Member Posts: 1,075
    edited August 2011

    coolbreeze, i agree with your post. It reflects another suggestion of mine to the moderators. that the alternative forum be seperated from the comp. forum. then, anyone who chooses to venture into the alternative forum, is aware of what they are doing. bco disclaimers heading that forum would also assist newbies.

    if my last post was confusing, i meant a header to each forum, not each comment, stating that 'these discussions are opinion only etc etc..'

  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited August 2011

    petjunkie wrote:
    I really wish that more posters here could just take a step back, breathe, and realize that they can't control what other people may choose to believe about cancer and treatments. Agree to disagree and move on. . . come here for support from like-minded people and ignore those who you don't agree with. Neither side is ever going to change the other's minds.

    1Athena1 wrote:

    To be sure, there are egregious statements like the ones thenewme quotes in her OP HOWEVER, if we were to fact check properly, we would find that many of us make errors, misstatements, confusion of words, terms, etc... There has to be a place where people can speak freely without being held to expert standards or even standards where they are expected to be correct every time.

    Beautifully put, thank you to both. My head is spinning this morning from lack of sleep, my cold, the death of my MIL yesterday and the grief of my husband and in-laws. I can barely concentrate.   I missed the OP but can guess the gist of it, so thank you for stating those points so well.

    CoolBreeze - Your whole post is sensible, I agree wholeheartedly with it. like, like, like.
    Sorry about your SIL, my thoughts are with you. Death shakes us up and flattens us for a while, then we reassess our own life.

  • rosemary-b
    rosemary-b Member Posts: 2,006
    edited August 2011

    Oh Athena I am so sorry.

  • Moderators
    Moderators Member Posts: 25,912
    edited August 2011

    Will separate Alt forum from comp forum, and do some other things to help. Cannot promise to be or handle anything beyond our means. We wish we could provide ONLY medically-reviewed, research based information on the discussion boards  --- truly! But WE do not create the content. YOU do -- our extremely diverse group of members. WE (Breastcancer.org) create our core content with the expert medical reviewers, editors,etc. That is all we have the ability to do. We can NOT control all the all content posted on our discussion boards, or the medical validity of every assertion. Please try to understand the purpose of the discussion boards, of what a small team is able to handle, what our Terms of Use and Rules of Conduct outline (and you agreed to upon joining).  Again, we sincerely appreciate the points that are being brought to the surface here, and understand your concerns. We sincerely mean this. But, please explain how this is even possible, and if you sincerley understood this as the mission of the discussion boards (that is, that we medically "validate" all information posted). Please review the Terms of Use that you agreed upon when registering for our discussion boards: http://community.breastcancer.org/help/rules

  • Kathy044
    Kathy044 Member Posts: 433
    edited August 2011

    For the record, for those who care, (and I really really do), the cut and pasted quotation beginning "Cultivating a Positive Mindset" is from the book Strength Training for Seniors by Michael Fekete. I'm sure that MIchael Fekete might care too that his words have been posted to BCO without proper attribution. Is this not against the BCO terms of service, Mods? If not this should be imo.

    I found the lines in a couple of places on the web -- each time the source was provided, that's how I found out about the work. It's not at my local library so I may buy it. The book was first published in Canada in 2005 but there is also an American edition. The quote was on p. 36 so that would put it in Chapter 4 Healthy Lifestyle Habits: Good Nutrition and Stress Management. I consider this  to be more Complementary/Holistic than Alternative. Just saying

  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited August 2011

    Thank you moderators for listening and responding. I think anything is worth a try as it can always be reversed if it's not working out.  I don't envy you your job as I see complaints from all sections and I'd like to thank you for providing such an excellent service that's been a lifesaver for so many. 

    You said...

    We wish we could provide ONLY medically-reviewed, research based information on the discussion boards

    I'm sure much of that information was at some stage awaiting trials or validation and it would be unreasonable to expect us never to discuss unproven treatments or remedies. By definition, everything on the "Clinical Trials, Research..." forum would fall into the "not for discussion" area.

    I'm wondering if you meant exactly what you said?  Please clarify. 

  • Moderators
    Moderators Member Posts: 25,912
    edited August 2011

    What I meant was that I wish that we could indeed do what thenewme is suggesting, and look for a study, clinical trial, paper, presentation, etc. that could provide "facts" or at least a "reference" for the topics and treatments discussed in the boards. This, however, as you can imagine, would be extremely time-consuming, limiting to some members and completely beyond our means in many respects. I agree that it would be nice to substantiate 'all' comments, but simply not do-able or even the purpose of the boards. This is however the intention of the core content on the site. 

    Is this more clear?

  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited August 2011

    Dear Mods,

    I think the suggestion I made (on the first page) would work.  But I'd be interested to hear what you think.

    It wouldn't require you to try to vet the information on the boards or link it to a discussion in the core content pages, it would allow those who have concerns to register them, and it would only lead to a reminder that this is a discussion forum, and that anyone who intends to rely upon "factual" information presented in the forums should vet that information.

    It need not be linked to a particular member, just to a particular post.

  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited August 2011

    Thanks for the clarification. Thenewme deleted her posts so I've only got a rough idea what was in her posts. I'd like to add that I've always found thenewme's posts intelligent and thought provoking and am sad to see her leaving.  My apologies if I tend to jump on things I disagree with and forget to show appreciation where it's due.  I'll do my best to remedy that in the future but there are so many wonderful people here it's hard to keep up with all the good threads.

    If only all suggested remedies had studies to back them up.  There lies the crux of the problem, that many age old or new potential remedies just don't get the research attention or grants as there's not enough resources to go round.  I don't think we should avoid discussing those remedies simply because they aren't medically approved or we wouldn't have a lot of things in general use as their status has changed following popular usage.

    I agree that it's impossible to moderate every post or even every thread and I wonder how you can keep on top of it all.  2,500 daily posts is impressive but hard to moderate. Please accept my huge imaginary bunch of flowers as thanks.  

  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited August 2011

    I'm sorry thenewme may be leaving.

    I appreciate what CoolBreeze is saying about not relying on a Discussion Board for medical information.

    I appreciate what the Mods are saying about the difficulty of reviewing 2500 posts daily.

    But I would like to present some food for thought -- a paper published in 2006 that used to be quoted a lot when I first joined BCO in 2007, which found that a great strength of an internet breast cancer discussion board was that misinformation was quickly corrected by subsequent posters:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1444809/

    Esquivel A, Meric-Bernstam F, Bernstam EV. Accuracy and self correction of information received from an internet breast cancer list: content analysis. BMJ. 2006; 332(7547): 939-942.

    The authors concluded: "Most posted information on breast cancer was accurate. Most false or misleading statements were rapidly corrected by participants in subsequent postings."

    It has been very sad for me to see that, lately, posting of corrections or even of differing opinions is often characterized as "bullying."  I think it's unfortunate that the potential strength of a large community's collective intelligence is not being recognized, and even seems to be discouraged.  There are people posting here who do know a lot. And, to name just one example, almost every woman here knows more about the symptoms of inflammatory breast cancer, and the fact that a clear mammogram and ultrasound cannot rule out IBC, than some general practitioner MDs. 

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited August 2011
    Ann - you are right - we can be the voice of reason - pity it's called bullying.
  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited August 2011

    Ann, You're right about the self-checking and I also really appreciate that the women here are so well informed about BC in all it's forms.

    The problem with some of the "factual" corrections is that judgemental terms crept into them and sometimes blatant insults too. I'll be keeping a watch for them in our new Alternative forum which I see has now appeared under the Complementary forum.  I will also be challenging grossly inaccurate information posing as fact. I suspect there are many alt gals who don't appreciate the extreme views. I'm sure we can work out an improved forum once the dust settles.

    5pm eastern Australia time. 

  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited August 2011

    Well said, Joy.

  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited August 2011

    Joy and SusieQ -- OT, but do you remember what I said a few weeks ago -- that I'm a nightowl and therefore "keep Australian hours"?  Case in point!  lol

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited August 2011

    Ann - what time is it there? It's 5:30pm here on the east coast.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2011

    thanks to AnnNYC, Joy, and SusieQ for your contributions.  I've learned a great deal from you and information you've posted. Wish that word "bullying" could be "flagged" as it is an attack.

    Also want to THANK Kathy044 - I feel strongly, as you do, that a person's words should be attributed to the person who wrote them, and not quoted without that information. Best, as it takes up so much space, to use just a few words, and link to the proper location.  Other wise it really does turn into the "telephone game" where we aren't given the original context. Thanks for posting the full information.

  • Lynn18
    Lynn18 Member Posts: 416
    edited August 2011

    AnnNYC:  I appreciate your post.  This community's "collective intelligence" is really amazing.

    Some people have said we should not look to this board for medical advice.  But, to be honest, I used information from this board to decide what chemotherapy protocol to choose, (along with my onc's advice.).  I knew no one else with triple negative BC until I came here.  I was able to see what kind of treatment other people had, what their doctors recommended, what their outcome was, etc.  So, this board should not be a substitute for medical advice, but people do use the information here to make decisions . . .

    Which is why some, like thenewme (and many of us), want to comment on some of the misleading or inaccurate information we see here. 

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