I am receiving broken links from members, not getting any more notifications, cleaned posts, likes for my post are removed, etc. I am slowly being erased from the forum. The censorship is already starting, the forum is being molded into a vision of some members. If you doubt that take a look at the original Part III of the Constitution of Science post back in July.
healthunlocked.com/advanced...
Magnus
The ability to reply to this post has been turned off.
Do you have evidence for that? Would be a real no go for me.
There is no "evidence for that." It's simply not true.
Hopefully not. As that would be a terrible shame.
I can only restate. None of this is true. Why would you doubt that by saying “hopefully?”
Please give us a Link for the post you are referring to and if you can describe what I should be looking for.?
A few days ago the thread for The Constitution of science when I viewed it was extremely long. Now when I go to that thread it's nearly 2 or 3 pages.
I no longer receive email notifications on etc.
so... you're referring to T_A's "Constitution of science" (1of3)?This is more than a little disturbing.....
Thanks for your concern, but I deleted my post myself. There are moderators now to keep the discussions civil, and that was my main concern.
Moderators, that is what I and many others did not want. So this whole discussion was futile. Everything was already in place. No can send or receive posts not approved by "the moderators." That would include anything on supplements. Thank you T_A
Darryl has always been available to get rid of ad hominem attacks. There appear to be a couple more moderators to help him out.
I don't think anyone will stop you, me, or anyone else from talking about any supplements you want.
TA just responded to you. Normally if you have email notifications set up you will see in your email that he responded.If that has not happened then somehow your notifications have been turned off or there is a temporary glitch in the system.
No you are not being "erased". Please try to avoid such alamarist, dog baiting claims.
My cancer is very much against me but not the whole world or this forum to say the least.
I hope I dont have to blame you for losing quite a few compassionate compadres whose compassion and comradery I truly appreciated.
This whole "the forum is changing conspiracy thing" has caused that loss of special guys and gals. Doesn't matter what their treatment beliefs are. Can take or leave or even argue against them. But behind that when the chips are down they were here with their caring words. Gone now thanks to the nonsense "sky is falling" crap said by you and a few others.
Perhaps Darryl will post what type of stuff the moderators are authorized to "moderate". I would hope nothing but off the rails personal attack where politeness has been abandoned. Perhaps if it evident to anyone that a post is nothing more than a sales pitch ..of course I guess we could argue that proposing anything other than SOC is a "sales pitch" ? Hmmmm..what should be "moderated " other than personal attacks??
I don't think there's any kind of conspiracy going on here with regards to notifications. Quite a few people have been having this problem for a while now.
One thing I do suspect though is that rants about the forum might not be tolerated by the moderators so your post may become a kind of "self-fulfilling prophecy" if it gets edited or deleted.
Can anyone respond to this message that has been on the forum for more than 3 years? Or am I responding the "moderators."
I’ve been here for around 3-4 years and nothing out of the ordinary is happening on my end. I’m getting the usual amounts of email notifications. In my case , I’ve probably barely walked the “ line “ and been abrasive to some to the point that I’ve experienced as many of the the “ scrambled screen “ one day access blocks as anyone here ….and I’m willing to fess up they were probably warranted. I’ve changed my behavior in recent times and everything has been ok on my end.
I will say tho , that personally I’m not fond of all the ultra right wing political material, dog whistles and direct personal attacks that have suddenly popped up here. Imho, this group is and should be about men that are in the throes of death ( on their way at least ) and about experiences - questions of their caregivers as well. There should be no place for extremist political rhetoric and personal attacks ( I’ve been on the receiving end of numerous of those over the years ).
It’s just my own view , I’m croaking and this group provides me camaraderie and medical support … it’s kinda a resting place I hang out in , filled will friends in my same boat … politics here ??? And how you bring yourself to personally attack a dying man , even if they are on here talking gibberish ( brain Mets and heavy Lupron fog. ) …. I dunno … I feel like some people should step back and take a breath and reevaluate what they are doing. I’m pretty sure the attackers and extremist aren’t at home waiting to croak. I’m pretty sure of that. Dunno how THAT could be possible. Hey there are croakers by the gazillions here … what’s with all this ?
Just IMHO, just say’in.
And a big Amen to you too.I knew if you stepped in here you could express it better than I lol.
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I'm keeping count of your "likes" and if someone takes them away, I'm going to tell.
I can see how men could become agitated or grumpy on a site like this, especially the ones experiencing powerful SEs of ADT , old age senility, or chemical brain effects from past treatments for example. … never mind the strain of facing death. this isn’t the first event like this … probably won’t be the last.
Previously ,its been more of a clash of egos or ( I think this one is ), clashes of established cliques. It happens, I see it … I’ve been accosted by one before … its just inexplicable.
This is my old, ADT, cancer treatment affected, riddled brain.
This is my old, ADT, cancer treatment affected, riddled brain in the digital world lol.
It applies to me ha.
There are most definitely posts and even messages that have disappeared. Specific is private messages I've had with other members that have disappeared. Not with you, but others. So just verifying I've experienced it as well.
I haven’t see that … but I do erase many of my PMs and a lot of my posts , which may cause the appended parts of the post to vanish. LuLu usually erases all his posts which causes ALL related posts disappear. Many others do as well. I don’t attribute anything sinister or conspiratorial about any of it …. I’m not emotionally invested in it enough to care much … I’ve got other things on my mind. I’ve seen the worse of the worse on the web ( flame wars ) . This is hardly worth mentioning in retrospect. Everything I’ve ever said will be irrelevant before long anyway. No biggie ….
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If I started a post about something non critical pertaining mostly to my I often delete the post and responses once the post has served it’s purpose.
Yes , many people do … that can sometimes cause all kinds of consternation, especially if done by the medical brains. I’ve gone back to reread some posts and sometimes the poster completely rewrote the post … and makes you think the looney bin has opened yayahahahaya. Bbbb ba bbbbba ba …what’s up doc ?
😂😂😢😢
😥I'm so sorry that has happened to you Kaliber. That makes me sad.
You’re a ⭐️ Kaliber, I agree with everything that you’ve said.
One other thing, where is the respect for Darryl, would we all be talking if it wasn’t for him ?
“ I could while away the hours, picking petals off the flowers “ If I only had a brain 🤪
I'm responding Magnus. I'm so busy but I'm sticking around and checking in here and there. I hope you're doing good. 🌻Jackie
Magnus, what you are saying about moderation is simply are not true. No one prevents posts or replies. Posts and replies are not being filtered. Moderators exist to "moderate," to keep the conversation civil, and as I am doing with this reply, keeping the conversation accurate.
I have sensed that my access to the forum has been cleansed. My posts are not reaching the full membership, what I view on the threads is not complete, Your monitors have been heavy handed. This is why I left Twitter.
I do know of a few members that have been erased from the forum and I saw no reason for that action.
This forum is a a valuable asset to members, all members. Please keep it that way.
I am seeing your posts. This group has been so helpful to me in caring for my dear husband who was diagnosed 2013 and had RALP, then IMRT, then Radiation Cystitis, now total incontinence from the RC (procedures only made things worse in final analysis). There was knowledge and support here that I really needed and still need.
Hi Magnus. I empathize with your "sense." You feel that you are not being read or heard. That said, your posts and replies are going out to all members of this community, except private messages to some people who may be blocking you. Only four members have been banned during the previous twelve months, and all four had their posts and replies reviewed by multiiple people and all agreed that these four individuals violated community standards most egregiously, such as with hate speech or threats of violence. That said, our community is growing every month and many lives are enhanced, supported and saved.
That said, this isn't a Gulag. People are free to come and go. Our communties are meant to suppliment lives, not to substitute for life.
How does one "block a member". I am with CAMPSOUPS and have seen the departure of 3 people in the last month whose input I valued as did many. They left of their own volition and I suspect a couple were do to the extreme comments from others. At any rate, where can I find instructions to block an individual?
Hi I meant to say " except some people may be blocking your private messages. " Group posts can't be blocked, except by the obvious, "don't read posts from people you don't want to hear from"To private messages from a member:
Click on the chat message from the member you wish to mute.
Click the button 'mute' located at the bottom of their message.
Confirm if you would like to mute the member
A confirmation banner will appear at the top of the page
NOTE: You can also mute a member after reporting them.
Here are some important points to remember when you’re muting a member:
You can only mute a member from contacting you directly (one-to-one messages only)
The messages exchanged with this member will be removed from your ‘Chat’ inbox
If you are in a group with a muted member, you may still receive group messages from this member
The member will not be notified they have been muted
Thank you Darryl for the quick reply. I belong to a couple of car enthusiast forums which allows users to block people they deem personally offensive. I found it handy for the relative few who ranted about Politics and Covid (yep even on a car forum). They were all eventually booted but it took the moderators a long time to do it.
How it worked was that a thread is always visible but if you blocked someone, you didn't see their response.
But se la vie, I shall just skip past the posts of those who offend me and hope others do the same to me if I offend them somehow.
We are all Stage IV cancer and suffering from this horrible disease. I can't for the life of me understand why anyone would waste their precious moments in this terrific cancer forum on topics that are unrelated to their healthcare, raise their blood pressure and fill them with anger or worse, rage.
Thanks again for the info.
I do know of a few members that have been erased from the forum and I saw no reason for that action.
I have followed threads and witnessed in real time racist comments, suggestions of supplements containing sulfuric acid being beneficial. Name calling. The list goes on.
When they disappeared I SAW REASON FOR THAT. For some the removal wasn't fast enough. They were warned a few times before removed.
How do you "know" your posts are not reaching the full membership? If you are going to make a claim like that you should back it up with evidence so that members can evaluate your claim.
Fair enough, but Magnus is a longtime member. Unique experience, always civil, not a nut on any side. Let's get to the bottom of his concern. No need to demonize him because something bothered him and he spoke up.
In what way did I demonize him? All I did was ask him, in a civil way, to explain why he "knows" that his posts are not reaching the entire membership. If you interpret that as demonizing someone then I don't think there is any hope of having a conversation/debate.
I hope Darryl will address the specifics of your observation!!?? Reasons, other than censrship, for what you are observing.....maybe you can provide some specific example that Darryl and staff can trace?
moderators is euphemistic for CENSORS. i joined this group i dunno, about 4 yrs ago? at that time, there were no moderators! it was free speech, all the way, every day. that's the way i like it, having a father that almost got shot in a POW camp, fighting for our freedom of speech, among our other freedoms. too political? aww gee whiz. bind and gag me then. Cancer affects every aspect of my life, including my emotional well-being. Censoring me while i'm trying to communicate here is nothing I want to continue. It HAS happened only once... so far. I call that strike one. If/when I get to strike three, I'm outta here, fellow warriors. Magnus' experience and willingness to share his story SAVED MY LIFE.... if that means nothing to some people here, so be it. I'm gonna post this in reply to him also, AND keep a copy for myself. Stay safe, brothers.
There have been moderators here since day one. You are entirely wrong to say otherwise. Moderators will continue here, too.
So now it's a whole team of moderators? Someone else thought you were the only moderator... and I remember thinking that also. I respected your research at one point and mostly agreed with your opinions. Now all I'm seeing is telling people they "are entirely wrong to say" yada yada.... what happened to you, pal? There's shit going on here, pretty obvious when you have even a mere few complaining about the same thing... but hey, have it your way.
Well here was a thread that was extremely helpful in regard to neuropathy... It's gone.
healthunlocked.com/advanced...
And many other thread links I saved are mysteriously void of posts made by certain members who provided valuable information that also has been removed. Not sure who makes those decisions, but it's problematic...
My problem is I should have saved those pages and converted them to PDF as I've done numerous times on other informative sites and saved to my own collection. Unfortunately, I cannot find that information any more... Other threads and posts on outside the SOC box like BAT and also Adaptive Therapy, etc. SOC is all well and good, but for a patient like myself, that there is NO Patient history, NO way to prognosticate my condition due to MY RARE presentation of my PCa, these outside the box threads are invaluable! And I can't find them...
Contact the original poster and ask if they took it down, …or just ask them to pm it to you , if you want to save it. Just a thought.
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Perhaps the poster deleted the posts you are seeking. I doubt a post and thread about peripheral neuropathy would have been deleted by anyone at our end.
So there's no flag on deletion of a thread as to who initiated it? Why would someone who posted information to help others, then remove that help? I provided the link above, and it's not there right? Do we have server backups? Restore ability!
I believe only the initiator of a thread can delete it. I only do it if I have a question very specific to me and unlikely to be of help to anyone else. I do it because people tend to go on and on about minuscule issues, to be helpful, and I feel it’s better to just delete it once the question has been answered.
Cooolone, content is controled by the poster. If a poster deletes their post, that's it. Neither Malecare nor HU will restore it. Surely, you don't want Malecare to become like any of the other communities who claim the right to own all content that is posted. I wish people who complained about privacy and data would take the time to compare Malecare's platform to the other platforms. You'll see we're the most protective and progresive in the English language internet world. I don't have a problem with people feeling concerned, or, even a bit paranoid, but I do have a problem when scare tactics are used to drive people away. Our platform is as cool as you would want. I'm open for improvements and your suggestions are deeply considered. Please send them to me in private message. The time to focus on prostate cancer posts has arrived.
Truly, I appreciate all you do here for us. But can you understand why this issue has arisen, and multiple members have concerns?
The last post I saw from pjoshea13 said this:
"Thanks to all who have voiced support recently. Stay in touch.
Best,
-Patrick"
What??!! I have no idea what happened with Patrick, but I DO KNOW that several of the replies to this thread were deleted (and no, they were not "offensive" or contrary to the ideals of civil discourse... I read them prior to deletion). So something happened.
If a member chooses to delete his own post, why can there not be a function that tells us this? If a mod chooses to delete a post, why can there not be a function that tells us this? These functions DO exist on other platforms, Instead, posts here are "disappeared" as if nothing had ever been there.
Further, the ability to reply to Patrick's thread was turned off. Why? Was Patrick excommunicated for some reason, or made to feel compelled to leave? Do I have to start PMing other forum members to find out what's up with a member who contributed about 1200 thought-provoking posts and provided great counterpoint to TA, whose posts I also greatly appreciate? I like BOTH sides of the issues to be available.
I don't know, but by virtue of the thread being shut down, should I not suspect there is some desire to have Patrick "disappeared" without a full array of comments and concerns by members who have followed him?.
Thankfully the history of all his prior posts still remain.
When the ability to reply to a thread is turned off, a reason should be stated. "Just cuz" is not sufficient, because things like that are the exact reason so-called conspiracy theories get started. If you want a forum without conspiracy theories, be FULLY transparent, always. How is this a problem?
Patrick is still here. He has not been restricted or anything like that. His replies were turned off because his thread was attracting trolls. Why someone would say they are leaving but not do so is a good question. the motives of 16,300+ people from our community are up to them. Privacy is respected here. By the way, I never said “just cuz”. It is entirely wrong for you to suggest that I said that. Please don’t become part of the problem. We have zero tolerance for trolling and making misleading comments is part of the trolling tool kit.
That's fair enough, and sorry if that came across as claim of what MUST have happened. I am not trying to say that, I'm trying to ask, are there not fairly easy and simple ways to just avoid the perception of that as a possibility?
So again:If a member chooses to delete his own post, why can there not be a function that tells us this? If a mod chooses to delete a post, why can there not be a function that tells us this? With reason given?
And no, of course you never said “just cuz”. But when the ability to reply to a thread is turned off, why can't the reason be stated? What should the default assumption be for someone reading that post and then wishing to comment? He can't know that trolling was occurring, so he may start to wondering.
If no apparent reason is given then "just cuz" becomes a possible default. I am not accusing you of that or trying to mislead or misinform anyone. I am trying to say that if real reasons can be stated, but are NOT, then imaginary reasons can be created.
So I think you are missing the point here. It does not necessarily have to do with what is really happening, but with a conception of what MIGHT be happening.
Please understand, I am not claiming this is the REALITY of what happened. I am pointing out to you that it is a possible perception, and when people feel they are given cause to perceive things in a certain light, well, then perception can (and will) trump reality.
Perhaps Patrick has not decided to leave all together just yet, because people like me are sending him personal messages asking him to PLEASE reconsider. We value his posts enormously and hope he decides to continue posting for the benefit of not just us, but a great many people on this forum.
I have to say I am with Magnus on this 100%. I have noticed it too. There is a creeping dogmatism. Many of our most interesting serious contributors are gone or silent. The belligerent one now is an unashamed apologist for big pharma and scientism (not science. look it up). For god's sake! Found abuses are proof the system is working! Think of the logic in that. The sound you hear is Orwell turning in his grave. This is not the HU I signed on for. Sweet words don't cut it Darryl. Something is happening here and I do not like it.
Nothing is happening. “Dogmatism” is Not being installed. However, Spreading toxic innuendo is an aspect of trolling. Please refrain from that.
Darryl, I hear what you are saying. Can you please clarify these questions:
1. What has been changed in the last months? I‘m pretty new to this community but some members with a longer history perceive a change in the way this community is moderated.
2. I thought, you are the only moderator of this community. Understanding that moderating a group can be pretty challenging: Who are the other moderators? How many do we have? What‘s there background?
3. I rarely see a discussion between contributors and moderators, ending up in e.g. a deletion of the post. Are some comments deleted right away when they appear? How often does this happen and could we aim for more transparency?
I think TRUST is absolutely essential for our community. So you and your colleagues have to make this sure.
1. Nothing has changed during the last few months2 I am flattered that you think I can moderate a community of this size by myself. There have always been several moderators, all of whom are volunteers. 90% of the work is spam and scam patrol. With rare exceptions, all are vetted and trained by Malecare. All are supervised by me. None can single-handedly restrict accounts or delete posts.
3. In the old days, we deleted spam and scam almost daily. Not so much occurs these days. Ad hominem attacks happen in spurts, but average just a couple per month. Content is not censored unless harmful-such as telling people to sit in the sun four hours a day to. burn off cancer- or items entirely off topic like anti-Vaxer diatribes. Political content is my call and I am flexible if it relates to prostate cancer policy. Everyone is welcome to private message me with specific questions.
Hummmmmm…
Dunno if you ever watched bugs bunny cartoons … maybe not. Bugs said that quote when he was creating mayhem and disorder all around him. mayhem and disorder broke out on the group . Seems to fit perfectly.
Forgot to mention that mentioning “ loony bin “ … is related to the fact that buggy bunny cartoons were called “ loony toons “ 😂😂😂
I’d rather like to see another cartoon characters famous quote … Porkey Pig , “ that’s all folks “ and refocus the group back on stage 4 cancer support.
I hope you coming from a better place than to be thinking about questions of sanity ..
Just say’in
When I was a kid, at the end of his show Porky would say, ‘well it’s time for us to say goodb….goodbuh a goodbuh… leave.’
I thought it was really funny that he substituted ‘leave’ for goodbye because he was stuttering and used it to get unstuck. I had no idea it was a common technique stutterers used.
So I guess you’re saying it’s time to refoc..refocuh..refocuh, get back to supporting each other😀’
Yea meee too buddy …. that’s good advice. . I’m not taking anything to heart … Teflon don here yayahahahaya. There’s a problem with that tho …..I have so much Lupron fog , I don’t remember who they were a little while later ….dang. Yayahahahaya yayahahahaya.
I see no lack of content here.... guess I'm missing the problem??? This whole internet thing can seem like a mystical experience.....who really is Magnus1964, and JPOM, and etc etc etc?????
Hope that your experience improves !!!
Who cares who what or why as long as at least one person on this site benefits from whatever information my boo died over 3 years ago from this shitty disease but I STILL come on to this site as it feels like family and home when I am feeling down just to see how everyone is doing what’s knew out there and I tell my boo so yes who cares who what or why
Soon I will turn off replies so we can return to helping people like Wongle1. We’ve entered the “beating a dead horse” phase as someone else pointed out.
We'll, I think you've been fair all around to this point. Keep that open mind.
Water off a Duck's Back, can't allow other's crap in my pile, mine stinks enough. Be WELL as can be 'cause we all gonna kick the can some Day
We've had a nice run of replies. Malecare, founded in 1999, but actually begun by me in 1997, is one of the pioneers of health related remote/online support, as well as an in-person support group network. We've learned a lot since day one, right up to this moment. We will always work harder to be better. That creed makes our work fun and gratifying. We know we are helping people live longer and happier lives, and for that, each of us is honored. For now, replies are turned off. Further conversation about community management can be had with me via direct message (click on my avatar). This is a prostate cancer support community. Let's us focus on helping ourselves, our brothers and our sisters. Replies for this post are now turned off.
The ability to reply to this post has been turned off.
Can i take vacation when already 5 years PSA < 0.01
Xtandi already failing? How is this possible 
Not yet 50 and already a bad diagnose 
6 months in and ADT already failing
The power of two words (or what happens when they are forgotten)
