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.
1 Like
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.
4 Likes
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.
9 Likes
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.
4 Likes
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…
2 Likes
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
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.
3 Likes
It’s probably not a false negative based on the slideshows And presentation they put out
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.
1 Like
So why don’t you suggest a concrete plan? It seems like you’re no different than what you’re complaining about.
1 Like
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.
1 Like
can you point out the part where i suggested any of that?
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”.
1 Like
…except create new theories.
2 Likes
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
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.
2 Likes
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.
2 Likes
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.
1 Like
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.
2 Likes
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.