I received a response from the American Foundation that the research is complete.
*And we will probably know for sure within a month or two if that journal will publish the study. *
- I quote the answer from the foundation.
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Probably next spring then…Wonder how much pressure Merck puts on that journal to stop this?
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Plus they’ve said that shit for a year…
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Do we know if they have found anything significant ?
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None, because (censored)…
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we can’t know that.
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Is it true that the study will be split in 2 parts?
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What does that mean we will know “if they will publish”?
Serious answer only please, unfamiliar with this terminology regarding these things.
Does it mean they will publish within that range? Or it means something else
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We all have to wait.
Moreover, baylor can repeat the Harvard’s fate.
We just have to wait.
Scientific articles need to be reviewed by… scientists not implied in the project. The aim is to try to find mistakes and disapprove experimental work to ensure that research has been done properly. This is normal and logic way to make science. Otherwise any uncontrolled or false (merk’s clinical trials for finasteride as per my understanding) research could be published.
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lol. It’ll be “published in a month or two” for what, since the last two years? Also, threads that Baylor is talked about get deleted I believe? What a joke. Saw this pic today on facebook, fitting:
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We aren’t deleting them. We closed one of the threads regarding Baylor (still visible, not deleted) because it was just theories on top of theories without evidence of what is happening with the Baylor studies.
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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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