Folks, I’ve seen a few posts where people are getting emotional defending their views and/or disagree with peoples opinions.
I’ve seen comments calling people ignorant, intentionally not listening, stupid and much more when they don’t agree with what they are saying. I realize that people are stressed with their personal situations and also that it’s frustrating for those who know more than others but can explain it to them.
It’s not helping anyone when people do that. People should be free to ask or comment about anything without having to treat lightly and end up in some heated exchange. PCa is hard enough to deal with without any of that.
Can I suggest we all try to keep it respectful?
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MrG68
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There is a difference between calling a person ignorant (which is an ad hominem attack) and saying someone is ignorant about something (say randomization). The former has no place on a civil forum, while the the latter is entirely appropriate. Sometimes a patient is so convinced that he knows something about a certain subject, that he defends it even when actual evidence is shown to him. This is called "confirmation bias" and is a common and human cognitive defect. Sometimes egos get in the way of important things that must be acknowledged.
If we are to get anywhere in treating prostate cancer, it is important to not take offense at every perceived slight, and to be open to learning new things.
That may be true, but it doesn’t mean anyone needs to engage into some kind of online humiliation. If people don’t want to listen to any one’s advice there’s no need to be disrespectful.
I agree that humility is needed at all levels. Nobody has the answer to long term remission of CRPC. It seems to me that arguments about fine points of treatment or diagnostic options are missing the point, even when backed by good science.
There is also a different point of view for those if us with all our skin in the game. This isn't mewrly an academic discussion but life or death. I think it's important to show compassion to those with the greatest risk.
Personally I have rather thick skin and it takes a lot to come to the conclusion that someone is trying to humiliate me. Others, my guess is that they come from abusive households, are less tolerant.
Dear Allen, with all due respect to your knowledge and your experience! If a person is called an "Idiot" or a word close to this meaning, then both in the first and in the second cases you have given, regardless of the goals pursued by the speaker.. - a person to whom such a word is addressed will feel the same! It is important, under no circumstances, to use words in dialogues that can hurt the opponent's personal dignity to one degree or another! You can always find a neutral substitute for any word in any language, well, or translate everything into the plane of humor.. Well, either in the most difficult cases, just exit the dialogue or put it on pause.. Otherwise, later, no melatonin will be enough to just fall asleep peacefully..))
P.S. It is more important not to offend a person than to demand from him later that he not be offended!
If someone calls you an idiot - take it up with Darryl. He will delete such posts - there is never any excuse for ad hominem attacks. I have been the brunt of several. But it's a different matter if you stated something that you learn is wrong. We all have erroneous preconceptions that we may use to "fill in the blanks." The Internet is full of false facts and statistics are not intuitive (I worked with research and statistics for 20 years, so I knnow how counter-intuitive it can be). If you feel like an idiot after raising an erroneous point, that is a self-esteem problem. Perhaps cognitive behavior therapy may be of use.
I almost always provide reasons for what I say and sometimes provide links. Sometimes, the same person "doubles down" on his error, and refuses to even look at the evidence. Such willful ignorance and self-deception is harmful to the patient.
TA you put so much into it that asking you to be soft spoken on top of it is too much. I think that if you stop being adamant about your points of view, it would not be you. I never met you but I feel that your passion for truth and your love for thy neighbor can be overbearing at times, but do not stop being you, there is too much at stake and too much that you can give
Thanks for that! I do get worked up when people post Internet garbage as truth. So much harm can be caused to the most vulnerable people (psychologically as well as physically).
I sometimes marvel at your ability to stay level headed and doggedly with self discipline maintain your intent to protect those that might be influenced by said "garbage" (although I get so infuriated I have many more adjectives than garbage to ascribe to it).
Saying thank you is a measly offer in light of my overwhelming gratitude.
I'm pretty patient in real life. I know how counter-intuitive all this is. Not just research and statistics, but the "natural history" of prostate cancer. It's bewildering, yet of vital importance. We all want biology to be like physics - you do A, you should get B. It's frustrating that it doesn't work that way.
Respectfully, why use "ignorant" at all, when it may be misunderstood by the recipient? Better........perhaps you are not aware of the relevant studies..... less desirable...... you seem to be ignorant of the relevant studies.
Ignorant is a charged word regardless of how it's used. Unless you're looking for a fight you wouldn't use the word in a f2f meeting. Even "uninformed" is condescending and obnoxious.
Yes there are much less "loaded" terms than ignorant that can be substituted. Unaware is much more neutral. As daven says uninformed is also condescending. If you want to be really diplomatic, maybe "may be unaware"
For example. someone may be ignorant of "levels of evidence" that informs all medical science. I see that here all the time. I can provide links, but if someone refuses to read those links, he is willfully ignorant and prone to self-deception.
I'm finding it a bit ironic that you would like people to be open to your posts , which I agree are based on good science, but are not open to suggestions from the group that are offered in a much more gentle manner.
I'm open to any evidence. I'm even open to new approaches that are based on something. Today, I'm responding to about 50 emails and I also run 3 support groups. If my responses are too terse for you, I hope you understand that I'm not paid and do have a life.
I do understand your perspective re use of "ignorance" as defined in Webster...it is just that "ignorant" has a different meaning to many folks, so why use it?
Everyone here appreciates and is thankful for your doing what you do!!! As my Doc said " we have many more questions than we have answers"... i think that was in response to one of my questions.
I am a writer. If you have a different meaning for words than the dictionary uses, it is a better idea for you to adjust your personal meaning to the common ground. That's how people communicate.
As a writer, maybe good to realize how certain words can be misinterpreted by large numbers of people.....we have different views here... I don't expect to change yours.
About looking up words in the dictionary, yes. Fortunately, you can look up the right definitions too. Communication is impossible without shared definitions.
Not the way most people operate......and when folks believe, even mistakenly, that they DO understand what a word mean, they are not going to use a dictionary. Any way, the list of words that could be misunderstood as being derisive is probably not that long, and I truly believe most people understand that possibility with a word such as ignorant, and thus are careful when using the word. I don't expect you to agree Allen.you have one view, and I and some others a different one. There is obviously no "winning " this argument. Like convincing someone that a certain former President was a bad guy.
Unfortunately, we all have words we misunderstand. The dictionary definitions are consensus definitions, so most people (perhaps not you) do understand them. No one is going to rewrite the dictionary for words you personally misuse.
Tall_Allen is all about tough love. His love of helping others (like me) have been invaluable. I don't have thin skin which allows me to take his information and advice for what it is. Tough Love for patient advocation is a gift that Allen brings to all of us on this forum. Accept the love or don't accept it but quit criticizing this incredibly knowledgeable and giving man.
I use the word in both of the ways it is commonly understood.....but I consider the situation and possible misunderstanding by someone. Again Allen...... we view this differently.....I guess I'm more sensitive to someone else's possible misunderstanding.Maybe I'm too sensitive.....God only knows?
I do not know the conversation that led up to this post, allthough this is chess and not checkers I, am ok with someone calling me out, or even be taken behind the woodshed, but only if they have the knowledge and facts to back them up. I dont want to play patty cake, if I need to be corrected. If I want nice I will talk to my mom. At this point just shoot me straight.
I am married as well. And still cry openly at sad movies and other folks difficulties like our ukraine brothers, for one. And even a couple hours ago for the pain im enduring. Hourl, Minute by minute, but I have a best friend whos a Dr and one thing I can say until the day I die he tells me the truth sometimes not always with a bow on top, but I know he truly cares because he doesnt always candy coat it. Yes there was a time when I found slight in someones verbiage , now, the message and intent are more important , just one mans perspective.
I support your proposal to respect the personal dignity of the opponent in any discussion that arises in this group! You cannot accuse a person of ignorance, unwillingness to learn, and call his thoughts absurd under any circumstances! This group brought together adults, people who have taken place in many fields of activity, each with their own baggage of knowledge and personal life experience behind their backs! We, under the influence of circumstances insurmountable for us, have united here in order to share new knowledge and personal experience in one specific area, which is called prostate cancer.. And it is clear that someone has faced this disease for a long time, and someone just yesterday and for this reason, everyone has different knowledge and experience about it.. The goal of each of us and our common goal is, armed with new knowledge and practical experience of each other, to overcome these circumstances in order, if not to defeat this disease completely, then try to prolong our existence on this mortal earth as much as possible.. And to prolong our life so that during this campaign to minimize pain in all its manifestations for ourselves and for the people around us! It is necessary to remember that words are necessary for us to share our knowledge, personal experience, to support each other and express our love for this world. And at the same time it is necessary to understand that a careless word can hurt a person, and sometimes even kill.. Let's take care of each other at least because we are all running in the same direction now - away from this very death! Good luck to all of us on this path and God bless us all! Amen!
Here I agree with you! The erroneous point of view is inherent in the same degree to both opponents! Do not refuse to at least take a look at the information that is provided to you! I suggested that you take a step-by-step review of the melatonin study, which was conducted on a sample of 995 patients for 19 years..?! Just look into it and see that in this study all the requirements of a randomized trial were met and even more with the division of groups into study groups, those who received melatonin and control groups who did not receive melatonin.. Moreover, the separation of all groups took place according to international requirements! I asked you to justify your vision of why these studies cannot be trusted, I wanted to understand the essence of why doctors and patients who spent 19 years on this study were wrong..?! Your answer that this is wrong just because these studies were called retrospective - I was not personally satisfied! I know how retrospective studies differ from prospective ones! But I also know that funding for such research often becomes an obstacle in order to conduct prospective studies! In these two concepts, only the approach is important! The main thing is to observe the randomized approach - and it was fully observed in these studies! And that is why I asked you to carefully look at the results of this particular study and explain where the mistake was made... But you preferred to grasp only the interpretation of the definitions themselves without studying the results and conclusions of the presented studies.. I do not agree with this approach in understanding the information provided! I'm sorry, but I definitely don't consider myself ignorant and stupid even in front of you!
P.S. Perhaps your mistake is that you decided that you are the herald of the ultimate truth and you can judge that even the possibility of thinking about melatonin is absurd ..?! How then would you comment on these randomized trials about melatonin:
I do not pursue thoughts of offending your experience and your knowledge, I respect that! But meanwhile, I want to get to the truth because my life is at stake! Excuse me, Allen!
I did read it. It is NOT a randomized trial. It is a retrospective data review. Did you read the links I provided? I've patiently explained why their conclusions are erroneous - I understand it's not something you are capable of understanding due to confirmation bias. I'm tired of this - if you BELIEVE that it is equivalent to a randomized clinical trial, you are just practicing pseudoscience.
Let me ask you this- Is there anything that would convince you that it is not true? (I would be convinced by a randomized clinical trial - would you?). See #1,2,15, & 16 in the pseudoscience checklist below:
OK, let's leave it! Time will judge us! I'm going to live up to that time.. And for this I will eat melatonin!))
P.S. Well, I really don't know how else to get through.. When a serious meta-analysis of 20 conducted, original, randomized clinical trials with melatonin is called an ordinary retrospective review of data, and everything else is just a blind eye.. Just click on this link: ncbi.nlm.nih.gov/pmc/articl... / from my previous comment, where it is written in black and white that the authors of this publication analyzed the results of exclusively randomized studies!
- people often interpret the written word differently - from each other and from the author's intended meaning
- we are all subject to various cognitive biases - easier to see in others, almost impossible to see in yourself. In addition to confirmation bias, one of the most common, there are at least a dozen more, and Dunning Kruger (people with limited ability or knowledge of a task overestimate their ability) is a good one that often applies to even well-intentioned platforms like this one.
- prostate cancer sucks
What I really appreciate about this forum is the real information and experiences that we get. And it never hurts to try to up the standard on that. Cheers, K
Well... Although I believe in civility, and outside of true agreesion... Bringing attention to a person's shortfall in understanding something is more helpful than it is hurtful. Especially to other readers who might take the errant information as being helpful.
There is an effect to which TA refers to as bias, and yes that's true, but there has also been a study on the subject and there is a term associated with the affliction! It's called Dunning Kruger!!! And although I'm no genius and generally a newbie to this advanced PCa stage/playbook. I have seen and read and understand enough to recognize some postings which meet this criteria. I also have recognized my own folly into that level of incompetence, ie, absent the knowledge of such and mistakenly believing that I'm 100% such my conclusions are spot on, lol.
Humility, is a powerful thing! And yes, I think any disease which has an effect upon OS for the patient is going to excite emotional passion into a discussion, let alone on a thought or position someone feels emotionally attached to. But humility is in receiving, and if a person has a weak constitution, and it suffers badly contrasting opinion to ones own, then they should really examine their participation in a public forum because undoubtedly it has also been shown that to create an argument in this setting, one only needs to post an opinion, and then await a response as there will definitely be a contrasting result.
The problem then is to be so closed minded and entrenched in your opinion and beliefs, as shown in Dunning Kruger, that you are joyously dancing to your own ruin. And that is ok too. I agree that there should be some decorum, but I also agree that when someone is way off the reservation in what they're posting, that those posts get the attention they deserve. Sometimes this may not be handled in the appropriate manner. Usually I will lend attention to the effect of Dunning Kruger as a possible affliction for a post or user, rather than resorting to using a label that may abrade someone's skin. Funniest thing is many don't bother to even investigate what it means, lol.
I don't subscribe to the everyone gets a prize, and I know I would appreciate being corrected if I'm posting something inappropriate or erroneous! This would cause me to take pause and objectively investigate the opposing viewpoint. But in contemporary social media and forums such as this, it's too often a person who is armchair qualified believe they're correct regardless of their understanding or strength of knowledge. And many, sometimes, it appears they post just to create the discourse. Absent any other gainful activity they may pursue in their day... Hahaha
Sorry for the diatribe... But it is an interesting subject to delve into. Remember Dunning Kruger!!! It is a humbling thing to do!
I guess that there are some posters that are more competent and confident with their knowledge of SOC treatments/big pharma R and D and there are some posters that are more competent and confident with their knowledge of research of adjuvant treatments that are not subject to big pharm R and D and subsequent clinical trials. The first category of posters might not be so competent with the second category of knowledge and vice-versa. This is bound to cause disagreement. I think there is a place for both categories of knowledge and posters on this forum.
I've been corrected more than once n this forum, and when I'm "ignorant" or simply "Uneducated" about a topic, I want to be called out, corrected, or challenged. That's how we learn. Society has gotten so wrapped up in feelings over facts, that we're all seemingly ignorant to reality. The proof of this is right in front of us, yet we ignore it because we're forced to ignore the truth, and the facts, or be ridiculed and excommunicated from society. If we don't accept that a Man is "Woman of the Year", and a Male Swimmer has every right to pretend he's a girl so he can win medals, somehow we're labeled as the freaks, misfits and malcontents. There are FACTS and there are FANTASIES.......I choose to life in a world of Facts, thus preventing a lot of heartache later.
To add to what you've posted, there have also been comments by non MDs on this forum stating that MDs are wrong( Snuffy Myers, Eugene Kwon, and others), as well as some on this forum that regularly dispense medical advice without being an MD or medical professional. Without medical credentials this should never be done in these forums.
When you worship doctors, you are in danger of disempowering yourself. Doctors are people and subject to the same errors and biases we all are. It is OK to be wrong (as Snuffy Myers often was - hypothesis testing is the bedrock of science), but it is not OK to state things contrary to facts.
The difference is, doctors are people that are trained medical professionals, with extensive clinical experience, and have case histories with the patient. They have the credentials to give medical advice. Evaluating complex medical issues needs to be done by an MD, or other medical professionals.
The folks who post here are not an MD nor medical professionals, with very few exceptions. Without medical credentials, treatment recommendations or medical advice should never be given. There have been numerous examples on this site where posters have crossed that line. Patients have used this forum for a 2nd opinion, and often there are those here that are more than willing to offer that opinion, giving medical advice/treatment recommendations/evaluation of imaging/ etc. without the credentials to do so.
Anyone can tell another person what the data say or don't say. That doesn't require a degree, just some proficiency with research ( which I have, btw). In fact, many doctors include someone who is proficient with statistics and research methods in designing and evaluating their studies.
I agree that some on this forum lack that proficiency and comment nonetheless. I ignore them unless the comment is directed to me. But you are right that there is a lot of bad advice here and also a lot of good advice. I would spend all day if I corrected every poster. Patients who come to this forum are not medical professionals and certainly caveat emptor applies.
I agree. that members should avoid dispensing advice as if they were a clinician that has examined a patient and all their tests. I try to limit my posts to explaining research or trial results, and end them with a suggestion to discuss with their doctor. There is a long way from understanding reports and professional qualifications of a doctor at the top of their field.
The reaction that caused me to pull away from the group for a while , was when I posted about how new cancer had grown while Lu PSMA treatment was killing my existing cancer. Instead of discussing that, I got a dressing down for listening to my medical team on the type of scan, rather than members of the group.
This was right after I returned from chemotherap , and was feeling beat up. I'm thicker skinned than most, coming from engineering background, and even there my challenging people's logic in public has caused them to stop communicating with me. I'm trying to be more civil with the few years I have left to get it right.
Hello, Javelin18! Here I didn't understand a bit, although I see where you're going.. Explain to me, please, all participants know that they communicate on this forum not with doctors, but with the same fellow sufferers who undergo their treatment according to different protocols, are at different stages of progression and with different levels of knowledge in various fields.. Some have not even fully learned how to correctly appeal with complex medical terms! In this situation, the participant creates his own post, describes his situation and asks for advice, or clarification, or to share his experience and knowledge in a specific field of medicine that they encountered during their treatment... Based on your logic, everyone who does not have a medical education is obliged to keep silent and not talk about what they know and what they have personally encountered? Then why does the author of the post publish all his questions and in general why are we all gathered here?? Perhaps I misunderstood the course of your thoughts - then explain exactly what you meant..?! Thanks!
P.S. If I had always listened to my doctors, and not delved into everything with my brains, then I would have been lying in the cemetery with my total lesions of the bones of the skeleton for a long time, and not fought with them and did not dream of living until those distant times when this magic pill for cancer was invented!))
I do think you misunderstood my post. In no way did I suggest people not respond. What I was referring to was sn off topic reprimand for following my doctors recommendations and giving that more credence than members opinions.
I hadn't actually asked a question. I was only sharing my personal experience with treatment in hopes of increasing understanding of why it doesn't work for some.
I'm not concerned with related questions to the post, and try to answer them with civility even when I disagree. I felt the response to my post crossed a line. As you pointed out not using trigger words is more likely to get a acceptance from the reader. We have a saying for that here, "You catch more flies with honey than vinager."
I do not need yet another censored site that everyone must tiptoe around so as not to “offend” anyone. Everyone here has a equal right to post or not, or read posts or not.
I'm on every day and don't see a problem. Some posts contain minimal peer reviewed scientific evidence and if the poster wants to put it out there, then that person should expect some contention from individuals. Keep the site as it is, a vital source of information and support please
Very well stated. Cancer support groups are for “support” and not admonishment or emotional conflict. Most men come to groups like this for descriptions of fellow patients’ own personal experiences, not for prescriptions of medical device. When people start preaching to other people they know little about, it feels more like a parent/child relationship than an adult to adult dialog. Condescension in any forum is destructive behavior. How we share our thoughts is at least as important as what thoughts we share.
I too do not know exactly to what the original post was a response. But I come to this group to learn things because there is much of which I am ignorant, and I appreciate the people who help me learn, and point out misleading, incomplete, or false information. But.... I still remember a college course many years ago; I knew the professor outside of class (we were both in the civil rights movement) and I respected his opinions. He was rudely critical of his students in class, treating them as if they were intentionally dumb, especially if they didn't know something he thought they should, or if they disagreed with him. It was one of the most unpleasant classes I was ever in; I never took another class from him. More importantly, I think he made more enemies for his ideas (which I almost always agreed with) than converts. Riding the bus here in Minneapolis I think I have seen more unpleasant arguments (between strangers or people who know each other) in the last two years than in all my previous years of bus riding. Many people are ready to take offense and explode, for real reasons; it's contagious--if I don't feel that way when I get on the bus I often do by the time I get off. But on this site, even if nowhere else on the internet, we need to be sure we create a healthy emotional climate in the face of a disease that has many of us on edge to begin with.
If one is angry after reading a post by an absolute stranger, or all chuffed-up about it, don’t type. Let the small maelstrom you are spinning in subside for a while, and think about the context. Then, close your phone or computer, look outside, and have a drink. Does whatever triggered you really matter in your present life? Really? Probably not.
Ok boys and girls, let’s all take 3 deep breaths! Ooooonnnnneeee, tttwwwwoooo, tttthhhhrrrreeeee! Now let’s enjoy this beautiful day we have been given 😎
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