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

General Discussion
#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.

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#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

#41

I don’t agree that this web site is useless. If people would actually do something then we could finally make research happen and get a cure. The next ten years do not need to be the same as the last. If you have some info that awor and axolotl already have everyone covered and all anyone needs to do is just sit then do share, though.

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#42

The real problem is that we have NO REAL references! I tried several times to let the doctors and my family read the forum and each time they answered “yes, but do you know who the people behind the moderators’ avatars really are?” or “who tells you they are real people?” If I think about it, it’s true. Who looks at us from the outside, can only read niknames that they write on a forum, without noticing that behind them are REAL PEOPLE. An outside observer will read the pseudo mad scientists’ posts that improvise absurd cures, based on tons of useless supplements (in most cases, they even make them irreversibly worse). We will never get anything if we continue like this. But do you think what would happen if only 20 of us went to demonstrate in the street? We will certainly get much more attention than we have achieved in decades.

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#43

I didn’t say the website is useless.

Constantly screaming about why people aren’t doing anything, is useless.

There will always be a large majority that won’t contribute to make the real progress.

A medium amount of people that will try to go explore in their own ways with different theories.

And then a really small community that understands all the technicals, unknowns, as well as the practical steps involved.

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#44

I agree that the video project is great. The mods have stated that they are working on an explanation for why PSSD and PAS are closely related to PFS. Once they or someone else with medical know-how has produced that I believe perhaps our biggest focus beyond what is already listed in the action guide should be to contact as many former users of those drugs as possible to get them to produce videos.

It would also be nice if we could find some famous and/or obviously high credibility public figure to share their story publicly. That way we could point people to that story as a way of getting their foot in the door to learn about all the others who have been affected. There is no question that the average person will assume that we are all hypochondriacs. That image is compounded by the fact we have overwhelmingly only been sitting here ruminating and bitching (like hypochondriacs) For over ten years, rather than coming across as serious people with a real problem.

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#45

Are you saying that you are satisfied with the established and current state of progress?

Do you think we are in a better position now than we were ten years ago and do you attribute significant improvement of our position to the work of forum posters here? I would love to hear what specific achievements made within this community (aside from work of mods of course) have been most notable to you.

#46

last ten years no

last 2 years, yes, factoring in the amount of resources we have.

we are making a push for institutional money, which is the most notable milestone for me.

“asides from mods” — youre obssessed with that not me.

you are not accepting the reality that most people won’t do anything.

i am accepting that fact, so i am not bothered with it, as i am willing to work with what i can.

#47

This conversation feels a little bit like you two could be good friends, but you’re getting caught up in the details of how someone said something.

What’s the best outcome from the conversation for both of you?

#48

i acknowledge that @vkg1 has great desire and drive to push us forward by making the most of this website and the people that come to it.

i can respect that. if he wants to try and push forward by figuring out how to convince people then i have no problems with it

was just voicing my opinion that i think a more efficient way is already being taken. but hey man nothing but respect from me. and we are both on the same team as far as i can tell

#49

Yeah, you are right that I don’t accept that a situation where you have 5 guys committing their lives and tens of thousands of hours of work while no one else does anything of note (you can’t list anything?) is optimal.

What’s your point in saying that you accept that? Just curious. Also still curious to hear what the big institutional money that you say “we are making a push for” (by which I guess you really mean the same couple guys always doing all the work while nearly everyone else is too cheap to even contribute data for?) is.

#50

This is going way off-topic.

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