Yes and that’s encouraging. Now we have much more. Now we realize it isn’t just middle-aged, bald rich guys trying to look younger, but also teenagers having their lives rekt before they’d even started (Accutane), as well as people of all ages and genders who were already struggling with depression (PSSD).
I agree with you on that we all must lead by example.
I recall there was someone in the news who tried doing a hunger strike at Merck headquarters. For what it’s worth, I would honestly be willing to protest in some fashion, if other people were. Unfortunately I don’t live near Merck or Roche headquarters.
What’s the best way to initiate research ourselves? I imagine funding is the main issue.
Just to comment on this, the YouTube video project is, and has always been presented as, a project for those who want to publicly share their story and have the benefit of it gaining more exposure and raising more awareness by releasing it via the Propecia Help social media accounts. This was made explicit in the very first public post on the subject here Are you interested in sharing your story for our Youtube project?
Each individual can decide whether this is right for them. Furthermore, one of our moderators, @Dubya_B has shared their story publicly on YouTube, here:
Maybe instead of things people can contribute to being described in threads placed randomly about, that have to be dug up by people who already know about them to be found, it would be good if the site had an “action center” where people can go to find ways to contribute.
A guide is live, setting out projects users can help with. There is also a sub-forum dedicated to community projects:
If anyone wants to help us out on these projects - we need everyone to pitch in. We need people to get involved.
No harm came to myself or @Luckydevil resulting from the making of that video. It would have actually been nice to have a structured outline to follow rather than being all over the place, me looking more awful than usual from poor lighting and video quality, and running 2 hours longer than necessary. A man named Edward also revealed his identity in the press regarding PAS without insult or injury. There was another young man whose mother outed him on facebook for having PAS with his consent. Worst case scenario seems to be that no one cares. …To be expected with the low number of people who speak out about this condition.
Can anyone state a specific reason they will not participate in the except that the majority of mods/admins haven’t? The guidelines don’t sound very restricting in my opinion. Basically don’t make threats, don’t bring up this week’s dumb theory, etc.
Wow I didn’t know that was you Dubya. I appreciate your strength for showing yourself to the public and talking about it.
I think most people wouldn’t want to go on because it would basically be admitting to everyone that we have all these problems that should not be seen in us at this age. I remember asking my doctor for Viagra and he was almost laughing. I was 24. He even said that finasteride was good for him because his sex drive was too high and it calmed him down. Thanks Doc.
I know. They’re great. I just think they could be elevated a little more over the regular posts. I thought calls for action and actionable items, or at least particularly significant ones, could be highlighted more so everyone sees them without having to look for them.
@Luckydevil and @Dubya_B great work!!! Will you guys be doing the YouTube thing also? My only excuse was the fact you’re kinda focusing on fin first as I read in the outline. I could also make other excuses like my brains dopamine function is fried so can barely move but I would find a way to over ride that. It’s only 6 people I’m surprised we don’t have that immediately!!
Anyway… I want to hear the conclusion because i’m not a english speaker so i can’t undersatnd the whole conversation but can understand a little.
sorry for poor english.
The conclusion is that We just have to wait until the Baylor study come out?? and we need more studies to confirm our condition??
In this thread, there are many talking not about baylor study. so very confused.
Anybody let me know Our state and future!
living with this condition 2 years… is very hard time
but I have a hope one day i can be a healthy person!
Essentially there is nothing in progress or even proposed with the scope and comprehensiveness that the Baylor study is looking to cover.
In plain English, the conversation on this thread is whether the community is being too complacent, by pinning too many hopes on the eventual publication of the Baylor study rather than attempting to create new avenues of inquiry and outreach.
You are entirely correct - this is way off topic for this thread.
Thank you for your answers.
You mean Baylor study can not be the key study to check our condition? and we will have to make another study to make progress?
This thread originally had no point. There hasn’t been any news on Baylor in about a year. It got submitted to a journal, supposedly, early 2019. We’ve know that since when it happened. It normally takes much less time than has transpired now since for a journal to approve and publish. Nothing has happened. For all we know it will never be published and/or there isn’t anything interesting in Part 1 and Part 2 will never publish. It’s utterly pathetic that we continue to sit here talking about it. Don’t know why this thread was created.
Everyone has been sitting and waiting for Baylor for 7 years or something thinking it would come out in a few months and that it would yield a cure. It never even came out.
there is no “key study” but a piece of the puzzle.
one of the mods helped design the study, so of course it will have valuable information if it was not corrupted.
however, we cannot rely on baylor alone, hence why we are raising more funds to do other projects.
we also have our own 23&me DNA project, you should contribute to it, it would help a lot
Of course it’s the key study. If a full epigenetic analysis of a wide cross-section of PFS sufferers isn’t a key study, I can’t possibly imagine what makes the cut.
The 23&Me project will at best shine light as to whether there are any genes which render people more susceptible to contracting PFS - as a preventative measure I can certainly see the utility. And I feel that’s a best case scenario. Likelihood of unearthing such a correlation would be rather low given the limited part of the genome being analysed. Either way it will say little about our current state and nothing about the epigenetic changes which are likely to have taken place.
Nothing comes close to the Baylor study in terms of breath and relevance - it’s no small reason people have been holding out for it’s arrival. It’s because it’s super important.
A few members have proposed doing something which mirrors the Baylor study. I consider this to probably be a mighty waste of money. It would only be worth doubling up if we are very certain that the Baylor study will not publish. Otherwise we’d have to be fools to waste resources on doing something which is likely to have already been conducted.
7 years and another years…It’s hard to wait.
They say it’ll come out soon every time, but now I can’t believe it.
But after seven years of research, wouldn’t there be any success?
I would like to ask Awor and Axolotl directly, but they are busy and can’t ask because they are really grateful for the effort for us. Anyway, I’m really grateful to Axolotl and Awor.
I am a 26-year-old man from Korea and I am still young, but I am really sad to spend my youth like this. But we live with hope because there are people who are working for us.
No one knows what the future will be like.
Wouldn’t there be a conflict like this if the management team could at least give us a rough idea of when the research will come out?
I think that some people want to downplay the importance of the baylor study because it would be devastating to admit that if baylor yields nothing, the foundation has made little progress despite the best of intentions in the 7 years since its founding. A large sum of money (1 million USD) would have been deployed and no significant progress achieved.
How do you assess such a situation? Maybe 1 million USD is a large sum for the community but a small sum for the problem we are facing. These kinds of questions and conclusions are tough to face.
I think it is unacceptable that in 2020 we still don’t know definitively the answers to very simple questions about PFS that are easily answerable with little money. These questions are cornerstone questions that will determine the direction of future research, as well as inform us at least a little bit about treatment options.
Is DHT tissue concentration in the penis of people with PFS normal or reduced? This should be easily testable for little money. The answer will be important because, if DHT is low, it will for the first time provide a potential cause for shrinkage and also for the overexpressed androgen receptor in the tissue.
Is our 5a-reductase broken - in penis tissue and elsewhere? That could be answered by testing the gene expression of SRD5A2, similar to Melcangi’s latest study. If so, this would explain low DHT in tissues.
Is our 5a-dihydroprogesterone low? This is another product of 5a-reductase with important functions in the nervous system. Allopregnanoline is produced from it.
Do we have detectable neuropathy - reduced sensitivity of the skin, and what is the source of it - in the nerve endings, in the larger nerves, in the spine or in the brain? Many people I have talked to and myself have this symptom. This is an easily answerable question because neuropathy is measurable, unlike many of our other symptoms.
Going towards questions that require setting up an animal trial but are still straightforward and relatively cheap as far as research goes: Do a fraction of mice given a single dose of finasteride get PFS? As far as I know this has never been done.
What hormones and genes are affected in mice with PFS? Once there are a couple of mice with PFS, a lot (everything) can be tested in them to uncover the etiology of the disease, which is much harder and more expensive to do with humans.
There are many PFS people but perhaps even more PAS and PSSD people with extreme joint pain. Does systemic DHT administration (transdermal) relieve the joint pain, and if does, what does that tell us about the disorder? I know DHT does wonders for my joint pain but it is important that this result is confirmed in other people as well.
The reason we have not answered these questions and done these tests is not for lack of money.