karenl Posted July 5, 2004 Share Posted July 5, 2004 HI All This one is off on a bit of a tangent, but some of you may remember that my sister, Jana, posted about a message board run by our local Cancer Council. We have been having an ongoing feud with them about their .,.,.,.,.,. regarding discussion of anything outside of surgery, radiotherapy and chemo (they wouldn't even allow us to refer other members to lchelp!!). Well, the last straw came when I recommended that a young woman with stage IV colon cancer ask her doctor about using Celebrex. That post was not put up either, so I wrote a (bit nasty) letter to the CEO, and today I received a reply that they are reviewing their practices and the moderators will now only delete posts that are defamatory, offensive, or solicitous in nature!!! This has really all come about because Jana and I know how wonderful and helpful a well-run message board can be (thanks to lchelp), and now, hopefully, many cancer patients and their families in Australia are going to benefit because of the great example that has been set by this board!!! Hope everyone has a good day today. Karen Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted July 5, 2004 Share Posted July 5, 2004 Good for you Karen. To paraphrase Margaret Mead: Never doubt that a small group of thoughtful people can change the world. Indeed, it is the only thing that ever has. Cat P.S. Yeah, I know. It's not the WORLD but it's an important enough part of it to make a difference. Quote Link to comment Share on other sites More sharing options...
Larry Posted July 6, 2004 Share Posted July 6, 2004 Great Job Karen.....when i read your original post about your cancer board down there i was stunned and all i could think at the time was STUPID STUPID and so on.............GOD BLESS....... Larry Quote Link to comment Share on other sites More sharing options...
karenl Posted July 7, 2004 Author Share Posted July 7, 2004 Cat and Larry Thanks for your words of encouragement. Of course, we should have known better than to get too excited about this apparent change in attitude! Jana put up a post mentioning the alternative and complementary therapies that mum has been using in conjunction with her chemo. They did allow this post to go up, but the moderator put up a subsequent post dismissing everything mum is doing as quackery (and she made incorrect remarks about evidence and clinical trials for these therapies). No encouragement, no support, not even "glad to hear that your mum is doing well, how are you going?". Just that alternative treatments are dangerous, and there is no evidence to support their application. The battle continues........we still have plenty of fight left in us!!! All the best to you. Karen Quote Link to comment Share on other sites More sharing options...
Jana_W Posted July 7, 2004 Share Posted July 7, 2004 Thanks Larry and Cat for your encouraging words. We will keep up up the fight. I am lucky I have such an excellent sister batting with me! Wishing you all well Jana xxxx Quote Link to comment Share on other sites More sharing options...
Larry Posted July 8, 2004 Share Posted July 8, 2004 Jana and Karenl keep fighting as it is attitudes like the people your describing that causes so much distrust in the medical establishment.I understand also that this is a problem with thinking of people educated in a system that believes the state (goverment)along know's what's best for you.So keep your independent thinking and fight fight fight.....Let freedom ring........ Larry Quote Link to comment Share on other sites More sharing options...
karenl Posted July 8, 2004 Author Share Posted July 8, 2004 Larry I think our Cancer Council has strong links with the medical community (as you would expect), and that is likely to be the main reason for their pig-headedness (is that a word??) regarding anything outside of mainstream medicine. We do seem to be making some inroads in recent days - will keep you posted on our progress!! Thanks for your interest in our plight!! Karen Quote Link to comment Share on other sites More sharing options...
jamie Posted July 8, 2004 Share Posted July 8, 2004 Karen, Dosent it make you appreciate our board that much more??? It sure does for me! Good job speaking up! Jamie Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted July 16, 2004 Share Posted July 16, 2004 You girls go! Good for you! And yes, this board is incredible. When my mom got diagnosed with colon cancer I looked for a similiar board for that and nothing came close! Karen C. Quote Link to comment Share on other sites More sharing options...
Melinda Posted August 2, 2004 Share Posted August 2, 2004 Continue to fight the good fight, Karen and Jana. If your posts help even one person to look into something that benefits them... That's victory unto itself. My hat is off to both of you while you struggle with these frustrating individuals. Melinda Quote Link to comment Share on other sites More sharing options...
teresag Posted August 2, 2004 Share Posted August 2, 2004 Nice work, Karen! You and your sister did a great thing that will help many people. - Teresa Quote Link to comment Share on other sites More sharing options...
karenl Posted August 3, 2004 Author Share Posted August 3, 2004 Hi Everyone Thanks for your ongoing interest in this. We seem to have made some headway now - the Cancer Council have stipulated in their policy that they do not want alternative/complementary medicine promoted in preference to orthodox medicine (which we have never done!), and they have also included a medical disclaimer on the message board, and so far, so good. No editing of posts seems to be occurring. Thanks for your words of support! Karen and Jana Quote Link to comment Share on other sites More sharing options...
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