| Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | At least some of us do care about the facts. See Joanne Bamberger's column in today's USA today: http://www.usatoday.com/story/opini...ccine-hpv-jenny-mccarthy-column/3884785/
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OP OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 |
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | What a powerful story in the Dailykos! Love the reference to journalism schools and whether they teach statistics or how to tell evidence from coincidence. Reminds me of a class in Logic I took years ago. How these stories continue to come en masse. Maybe they will serve to pry open the eyes of some of the anti-vax groups.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | The syndicated TV show "The Doctors" is broadcasting a segment today (check your local listings for time/station) in which two sisters, ages 19 and 20, are saying that Gardasil caused premature ovarian failure and left them infertile. More details on their claims here (article is from early November).
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Great! Let the anti-vaccine ball build even more momentum. This should be a no-brainer to get immunized. Here in the land of choice, and everyone being entitled to their own opinion it saddens me to see this anti-vaccine push for the Guardisil shot.
Oh well, two steps forward and one step back happens with just about everything in life. Charm would be having a stroke over this. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | Christine, You are right, indeed! Thanks for the smile as I thought about Charm .
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11) SCC L oral tongue (no risk factors) L partial gloss/MND 3/28/11 @ 25 wks preg T1-2N0M0; no rads/chemo Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-) Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx. Various scans since rx ended are NED! Part of genetic study for rare cancers @ MGH. 44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | The entire anti-vaccination movement needs to be viewed for what it is - BS and kooks! And you know there is no sense wasting time trying to have a rational conversation with them, so don't waste any time and energy on them. Keep the focus on educating those that subscribe to a science based approach to medical diagnosis and treatment.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Maybe I'm just a never-give-up type (and sometimes to a fault), but as I see it, those that are advocating the anti-vaccination movement like Mercola, Natural News, Sanevax, VAERS are doing it to promote their own agenda or product sales. They do it by changing or leaving out info to make their own version of "research" what they want it to be and they play on people's emotions, in order to accomplish this. When anyone is advocating something that is downright dangerous to one's health and life, especially any organization or individual that is in it for their own financial gain, or other advantage, they need to be exposed for what they are doing. If enough people or organizations take the time to do this, maybe the blindly following sheep will begin to see that they need to do their own checking. The FDA has ordered Mercola and its coalition members to stop making illegal claims. Others like Quackwatch and Skeptoid have also found it important enough to expose the anti-vax quacks. If they can do it, I can too and I will - every chance I get. I don't want anyone (not even the "kooks") to have to go through what my son did in surviving his oral cancer. I don't want any other mother to have the fear of losing her child or to see him (or her) suffer the unbearable torture that comes with surviving oral cancer.
Last edited by Anne-Marie; 12-09-2013 06:42 PM. Reason: typo
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OP OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | "All that is necessary for the triumph of evil is that good men do nothing". This has been attributed to Edmund Burke, who actually never said this exact phrase, and has even been rewritten more succinctly as in "Evil only prospers when good men do nothing."
But in our modern world of the Internet, it carries a different meaning than when originally penned 200 years ago. Myth, misinformation, half-truths, outright lies, permeate the online information world. For the most part we all ignore most of nonsense that is out there; but what if someone less informed, less analytical, comes across an answer to an important question that is one of these fabrications?
In some instances, as pointed out by several of the high profile commentators of what occurred on this TV show, there is the potential for people to be hurt, even die. I disagree with Don respectfully. To allow this kind of misinformation to live is dangerous. We all know all to well, in our roles as cancer patients, caregivers, and survivors what the cost of all this might be.
While I agree that you likely cannot change the mind of a fanatic, it is important that the argument for the facts, the truth, be fought. Not necessarily in the comments threads after some article, those are the kinds of no-win situations that do not really change the dynamic. But every opportunity we are afforded to state the risks, to state what we know is backed by scientific evidence, to tell our stories of harm from this virus, of a battle with cancer that had we been vaccinated might not have been fought - we need to keep that quality information out in the world. To do nothing only allows this cancer of misinformation and innuendo to survive and prosper.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Great comments.
[quote]they need to be exposed for what they are doing.[/quote] [quote]To allow this kind of misinformation to live is dangerous.[/quote]
What follows is more from the head rather than the heart.
If the overarching goal is to achieve awareness of the vaccine and convey the positives, then, given limited resources, strategies and tactics to accomplish this goal are defined and executed.
A few guiding principles:
1) limited resources, 2) achieve the greatest progress with the fewest resources, 3) understand success is less than 100% (population of target age) getting the vaccine, 4) existential threats will be defined and resources applied as necessary.
Number one is pretty obvious and especially relevant to specialty causes such as this. Given number one, getting the most progress with limited resources is critical. The common saying, "achieve 80% of the goal with 20% of the resources" means get all the low hanging fruit knowing some at the very top are left behind as too costly to retrieve. Number four means even if one of the fruits at the top of the tree can infect the whole tree and kill it, you must apply whatever resource you can apply to go get that one at the top.
I've not spent any time looking into the variations from this standard model as it applies to promoting and educating a potential lifesaving medical vaccine and certainly there are nuances requiring some adjustment of the basic business model to address this issue. I KNOW Brian thinks about this everyday, so I'd love to hear his take.
I'd love to hammer, stomp out, and totally discredit every false and misleading message just as much as you. But we are in the Internet and hyper mass media age and information flow is so accessible to all, it is impossible to stop all negative messaging.
If the Katie interview was deemed so detrimental to the cause then you may be obligated to address it head on and expend resources, maybe all of it, to go to war.
One would expect companies producing and profiting from the vaccine have more to gain if they can prevent the false messaging creating confusion in the market. The fact interviews like the Katie show go on indicates to me it is a battle they chose not to fight for whatever reason. With a battery of legal force at their disposal, it would not take much to file some action to disrupt the airing of that episode. Why they don't shut this nonsense down forces one to dig deeper. It it would provide a better balance between heart and mind.
Great dialog, don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | |
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