Baylor's research is finished and checked by a medical journal

General Discussion
#21

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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#22

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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#23

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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#24

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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#25

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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#26

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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#27

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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#28

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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#29

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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#30

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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#31

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.

1 Like
#32

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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#33

It’s probably not a false negative based on the slideshows And presentation they put out

#34

So I guess we should just sit here and hope that there is something good in part 1 which, since it is 7 years late or whatever must be coming out any time now, right? No point in doing anything but sitting and not doing anything as long as Baylor must be so close to coming out. And even if part 1 doesn’t immediately cure us, still no need to do anything but sit, because part 2 will probably have the cure too, right? And part 2 must come out soon also because it has been so many years that we have been expecting Baylor that now there is no chance it will be any longer. No chance at all that part 2 would get delayed further or never appear. We’re practically cured already. It’s almost like we can buy champagne and plan a party. To do anything other than sitting and waiting for Baylor would clearly be the dumb thing to do at this point.

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#35

So why don’t you suggest a concrete plan? It seems like you’re no different than what you’re complaining about.

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#36

Have you read New user? START HERE? That’s a good place to start. There are also several other projects and things that be done to get the word out and bring suffererers of SSRIs and Accutane into the fold. But at least do the things there.

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#37

can you point out the part where i suggested any of that?

#38

Wasn’t replying to you. Just tired of general communal impotent bitching about Baylor/victimhood and/or interminable assumption that it’s just around the corner so no point in doing anything. No matter what, communal interpretation always seems to be “let’s not do anything”.

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#39

…except create new theories.

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#40

I only responded because I got an alert notification so I assumed it was towards me

Either way, typing up text isn’t going to roundup the herd here.

Only action will. We did the Survey, and awor and axolotl are getting funding

All we can do help the mods in a focused direction I highly doubt forcing people over online messages will change anything