With all due respect, that’s not what has been happening and it is not just one thread.
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Guys, will you please just get over Baylor. It will come out when it comes out. There is nothing to be done about it and it is out of our hands.
Focus on worrying about things that can be controlled that may even positively affect your lives.
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We also merged some topics, but we have not been deleting topics about Baylor.
As @frustrated says, it’s a waiting game.
There’s little point in having topics about Baylor which consist of speculation and complaints that only generate either misinformation or bad feeling.
There is no conspiracy.
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I’m pretty sure it was more than one thread that disappeared. Besides, people theorize about all sorts of things on this forum. I think that some of the “cure” stories that people share are far more dangerous. One person says he got cured by X, 10 other people use it, 8 doesn’t experience any changes, 2 get worse than before…
Censorship is not a good thing. It raises suspicion, even when there is nothing to be suspicious about.
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That’s why in our guidelines, we don’t allow people to say “take this cause you will feel better.” Instead, the guidelines say to word things through your experience and not as medical advice.
As examples, instead of using definitive statements about the condition that can appear as factual claims such as “PFS is this”, “This will work every time” or “Do this and it will cure you”, consider using language such as “I believe…”, “You could try…”, or “This has worked for me”.
We have to have guidelines in place to make this place progress with conduct, safety for members, and to clean up redundant topics/statements. In addition, personal attacks aren’t allowed. Theories are welcome here, as stated in the guidelines, when backed with evidence and reason. If you have a specific rule or topic that bothers you, please just message us kindly. Us (the moderators) and you are much more alike than different, but we just have to have some rules in place for us to get somewhere.
The state of PropeciaHelp has changed a lot for the positive in the last few years, including the overall usability of this place and quality of discussion. Thanks to this community, we have a clean looking website, survey data, a 23&me project, YouTube video project, and thousands of users stories. We’re ripening this place for when its time for the medical community to accept our condition.
Like I said, please just be forward with us if you have problems with any of our topics/guidelines. We would truly love some feedback to make it better.
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I could dig out the closed, archived and often unlisted threads and count them, unless you do delete them in the meantime.
Don’t you think it is a bit ironic to argue there is no censorship on PH on a thread that requires pre-approval to post? (My posts on this thread require pre-approval)
Nobody is saying there is a conspiracy. Censorship is as old as the world and it always exists for the same reason - to shield the ones in power from criticism.
To illustrate the point above, just replace the word Baylor with Propecia and imagine who might say that.
“There’s little point in having topics about Propecia which consist of speculation and complaints that only generate either misinformation or bad feeling.”
And criticism at least in the form of critical analysis – which is currently not allowed on PH – is absolutely necessary for moving forward in a better direction, for learning the mistakes of the past and hopefully correcting some of them.
None of that is currently happening in our community.
UPDATE Note that this update was added after the posts below up to Orthog’s post starting “In my view”.
The posts below this one directly concern what I say above or in fact directly address me. Unfortunately, I am being prevented from responding to these points in the thread because my posts on this thread are being blocked, all the while the admins are proclaiming in public that “censorship” either doesn’t exist or was only on previous threads.
No, censorship is here and now - on the present thread, and it is not because of “slander” or “speculation” on Baylor. The post that was blocked (denied publication) is highly relevant to the present discussion and is not in violation of any forum rules. It was blocked because it proves the points about censorship I make above - and the act of blocking it proves the points beyond any doubt.
The blocked post was in direct response to an admin’s claim that there was no censorship on PH. It read the following:
“If these words would have any meaning whatsoever, you would lift the pre-approval requirement from this thread and pledge not to delete or censor any of the comments to follow or close the thread itself in the future. Only then can we continue this debate. If you refuse to do all of that, that would be an absolute confirmation of what I said above.”
I am asking the admins: why was this post deleted (not approved)? What forum guideline did it violate?
Widespread censorship on PH is enabled through the forum’s rule that admin decisions cannot be questioned or discussed in the forum. This rule effectively means that a user cannot talk about the act of censorship and has no recourse against any arbitrary act of censorship even if the censored content itself was in line with the rules.
This rule effectively means that no other forum rule has any meaning, as any rule can be arbitrarily violated by admins without any trace of evidence and without repercussions. It means there is absolutely no due process on the forum. This kind of censorship, citing this rule, has happened to me multiple times. In fact, I have been prevented from starting a discussion in the forum questioning these very forum policies, all the while the admins keep claiming in public to be welcoming to feedback (as is being done on this thread as well).
The ultimate answer by admins to such criticism, after all others have been exhausted, has traditionally been that access to the forum is not a right but a privilege. I have personally been told this in response to my criticism regarding freedom of speech. In other words, this is a private venture and admins can do whatever they please on it. I am not sure this is the kind of argument that will be helpful in uniting the various fragmented communities affected by PFS, PAS, PSSD, and others. And if this is what’s offered, perhaps we need a different platform going forward that would provide basic freedom of speech, transparency and due process for the members of our communities.
Tellingly, in past discussions about lack of due process on the forum, administrators have consistently replaced the term “members” with “patients”. This is not a coincidence. Members of any social group need to be bound by a social contract which grants them certain rights and obligations within the group. Patients, on the other hand, are individuals who can be passive receivers of care and therefore have no rights or collective power. This distinction seems to have been deliberately employed by admins to evoke the notion that forum members have no rights and forum admins have complete discretion on the forum.
Further, in response to criticism, I have been reminded that this forum is maintained by the volunteer work and personal expense of the administrators - for the benefit of suffering members – and that it requires a lot of difficult moderation and often intervention to save people’s lives. This of course is true and I applaud the admins’ hard work and dedication, and I am grateful for it. I believe PH provides tremendous support to suffering members, as it has done for me. In no way, however, does this invalidate criticism against systematic and not just accidental or collateral censorship, which stifles debate that is sorely needed for our community to make progress.
This debate is not about Baylor. This is about our future. Freedom of speech is the most fundamental requirement for progress in every community. We need to be able to debate freely the directions we are going to take as a community. Many legitimate threads attempting to do exactly that have been blocked under the pretext of stopping “speculation” about Baylor or often without any justification at all. Other threads have been blocked with other similarly specious argumentation (commonly used in the history of censorship), such as appeals to order, unity, or presenting a good face to outsiders.
Below is an example of such a thread, by @Andrew35, that was closed without any justification or warning; there are many more examples: Gene Expression Study for PFS Note that this thread was closed AND unlisted, which means it cannot be searched for unless you have the exact link. Why? Here is the opening post of the thread, by @Andrew35:
<<This was posted by @sibelio in last nights Baylor thread, I will leave it here for viewing. "My opinion is that we need to forget the Baylor study and stop waiting for it. The substantive, gene-expression part of the study will not publish within two years. I will not comment here why this has happened. Instead, we need to try to recreate the most critical parts of the study ASAP from scratch. Rather than investing money for 23andMe, which in my humble opinion will not produce any results, we need to fund-raise for a targeted gene-expression study with a small number of participants. Doing the right tests on even one true PFS subject will answer a lot of questions. Similarly, we need to fund-raise for and do an animal study. I hope I will be able to respond soon to some previous comments regarding a lack of feasibility of animal studies.”>>
As you can see, this is a thread which attempts to start a substantive and highly necessary debate about the future direction of this community with regards to research. It is highly focused on ideas for future research - not even dwelling on past mistakes. It also questions the current strategy of the admins in a reasoned and civilized manner, which should be allowed and encouraged in a free community.
It is important to acknowledge that this censored thread or any other may very well be proposing a wrong approach forward. The approach, however, deserves to be discussed. This is what freedom of speech is about. Instead of debating the merits of these ideas, however, the admins simply close down the thread, and unlist it so that nobody can find its content.
Ultimately, censorship is a method of control. This is how it has always been used in history. It shields the ones in control or power from criticism, challenge, or opposition. The ones in control, as always in history, believe they know the one “true way” forward and they don’t want to deal with dissenting opinions. However, as always in history, silencing free debate is detrimental to progress.
None of the arguments above amount to a denial of the tremendous work admins on this site are doing for our community, for which, as I said earlier, I am personally extremely grateful. It should be self-evident that an appeal for transparency and freedom of speech on PH does not question admins’ otherwise good intentions and great contributions to the community. Any line of defense against the important points raised above using such argumentation, as in fact has been used before, would be deflective.
Finally, I would rather not spend my and anyone else’s time and effort fighting over this issue. I would rather we spend our collective time discussing the ways we can make progress as a community and working towards finding a cure for PFS. However, no progress in any community can be made without the firm foundations of freedom of speech, transparency, and due process – something that has been discovered and established in human civilization long ago.
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Criticism is allowed! Specific feedback is actually really helpful to us. That’s why we have checkmarks by our usernames along with DNA for the 23&me particpants - members suggested those things and we listened. That is just one example, friend. We also have members that help us with projects and things that they have talents in that we do not possess. Please do give us specific and constructive criticism of things you would like to see. Negative posts about leadership on here without any sort of aim just brings down morale, and doesn’t help.
I’m sorry you feel that way, but I strongly disagree with your statement that we are not moving forward in a better direction. We have a survey with data we intend to publish, a genetics project via 23&me, and we are starting to become even more well presented in the media (see Reuter’s). 2019 was our best year yet for raising awareness for this condition and putting ourselves in a better position. In addition, this website looks much more beautiful and is much more functional than it was only one year ago. And compared to three years ago? We have made tons of progress.
I know we aren’t in the perfect place, but I think we have made leaps and bounds in this terribly uphill battle. I’m just like you - I want to feel better one day and regain what I’ve lost. The more we act as a team the better we can meet our goal as a community.
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I back up Sibelio on this one. Several threads have been put on closed just because there was being talked about Baylor. They weren’t put into one thread, and in many of these threads people were not insulting each other nor fighting. Many threads about Baylor were just being insta-closed.
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The fact that this train wreck of thread is still open and that the closed/merged threads had dozen and more posts shows that threads are not being “insta-closed” and that there is no policy to “censor” people on this topic.
But this thread is also a prime example why some threads about Baylor were closed. They tend to bring out the worst in some people here. People were frequently insulting the lead scientist, spreading conspiracy theories, making inflationary sarcastic remarks, spread their general disagreement with the direction of the research etc. Now some people use these threads to play avengers against “censorship” of previous threads making this a self-fulfilling prophecy, because it’s precisely their behavior that will lead to another of these threads being closed.
It’s easy. If you want Baylor threads to remain open, refrain from such behavior. Otherwise this thread will be closed as well. This is not an anything goes forum. There are rules that the moderators are tasked with to enforce to keep this a sane place. Some of the older members or those who have gone through some of the old discussions, know what kind of place this forum used to be. And we will not allow this forum to return to these days.
If our initiatives pay off the way we anticipate, this forum will get a lot of attention and needs to be presentable. Threads like this are detrimental to our cause. I will leave this thread open for once as a gesture of good will. But this debate ends here and anything not about Baylor and/or showing the aforementioned behavior will be deleted. Any future threads that turn out like this one will be closed again. I am sorry if you don’t agree with this approach, but this is the direction the admins and staff of this forum agree on. In the end, we cannot please everyone.
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We are all very disappointed and frustrated about the way Baylor went, and most of us can’t talk to our friends and families about it. It further adds to the frustration when we can’t talk about it here either.
I understand that the thoughts that we share about it can be very negative, but wouldn’t it be better to assure people that these delays could occur but people are working on it and we still have other things to look forward to, because locking threads doesn’t make all the negativity magically disappear, it just makes us unable to express it.
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Are we really bitching about the Baylor threads?
Come on guys, there was nothing of value being “censored” in there
It was just a cesspool of conspiracies and speculation
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In my view censorship should be kept to an absolute minimum. We are all equal. We have all been blighted by the same condition. Why should some sufferers have the right to voice their opinions on the direction of research and progress whilst others are silenced, even though their opinions are well-reasoned, well-argued and very valid. Often they are silenced merely in the name of avoiding disunity, and running the risk of the forum being seen as disorderly and irrational by outside parties. I understand the motivation, given many see us as a bunch of hypochondriacs suffering from psychosomatic ailments. But I urge people on here, admins included, to be open to criticism, and views which they may disagree with.
As sufferers, we are equals. We need to be an inclusive space for all who are afflicted by this horrible condition. Even if one invests a considerable amount of time benefiting the community as many of our administrators have done, often thanklessly, views should not be silenced unless they pose an immediate danger to others in the community. Opinions which are unorthodox should be challenged with logic, not with suppression.
Often a messy home is a healthy home.
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Yeah unfortunately it kept bumping up the only posts with substance, and caused a lot of unnecessary confusion. Often repeated questions and more recruitment to conspiracies.
Despite my love for free speech no matter how harsh and offending it is, I saw little reasons to keep those threads.
I think our unit online has to operate differently, and we do need a little bit of centralized leadership until things really start rolling in momentum
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I’m not into hostile speculation, nor am I ungrateful to the mods here, but I also find it very odd that they’re so touchy about the Baylor study in particular.
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From my honest perspective, we just close down or merge threads related to “when is Baylor coming out?” because there are already hundreds posts with no one with the knowledge. We merge many topics together to make the knowledge easily accessible onto one topic and avoid redundancy. That’s why we encourage members to search before creating posts.
And we didn’t run that website. Whoever did shut it down and had it merge to our website when you attempted to go on that site. We’re grateful for them merging their site to ours because we want to unify all the patients onto here.
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Seriously do you realise that a small proportion of the funds collected here don’t even make a dent on the money acquired to pay for the studies. If everyone breaks apart that is a terrible situation, we are already a tiny community we need to stick together even if everyone doesn’t meet eye to eye on decision making. Everyone is frustrated moderators alike with the studies, people forget they are in the same situation without these people this forum would be derelict and dead in the water. This situation requires a tremendous amount of organisation and work which is all on a voluntary basis. I honestly couldn’t imagine if the moderators disappeared how fast this website and our cause would fall into complete chaos.
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Thank you @Papasmurf ! We will try to be as transparent as possible from here on forward. We understand how important it is to be heard, and we do not silence and will not silence “weird or unorthodox opinions” as users above said. We have heard you all and made yourselves clear.
We will, however, absolutely continue to merge topics into existing ones to keep the readability and searchability of this place functional and close threads that don’t abide by guidelines. Creating posts that are inclusive, logical, and respectful is hopefully universally agreed upon by all of us and should be a responsibility we maintain.
Unity is key! Alone and apart we have no power and that is what Merck would love to see. But thousands of users with the same story and voice are powerful.
Please remember that a moderator himself (awor) created the Baylor study in the first place. He is probably more frustrated with the progress than all of us combined. Let’s rally behind him and the cause until we solve PFS.
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I would take what the foundation says with a grain of salt…Philip told me this back in April or so saying it could publish any time now…He also told me about it being in 2 parts…Then they said to check back month after month ever since…
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To be fair, while not formally published yet to my knowledge, Baylor have already released a study on PFS this year, the abstract of which can be viewed in this thread The Persistent Effects of 5a-Reductase Inhibitors Used in the Treatment of Androgenic Alopecia on Men's Health
As Axo said in that thread
“This is an additional publication with regards to the same cohort. They have also conducted a full genome expression analysis per a further protocol.”
So there are two separate publications. Also, I can’t speak for them but I imagine the Foundation are as frustrated as anyone at the time it’s taken for publication to happen.
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Maybe it’s better that it doesn’t publish. Maybe it’s another false negative like Harvard was. The tragedy with Baylor has not been the delay of its release so much as the failure of the community to do anything themselves/to promote other research.
If indeed there is a conspiracy to cover up PFS, then we ourselves are responsible for letting it happen because we ourselves sat and waited for Baylor rather than doing what we could to get our story out and promote other studies.
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