I want to make my YouTube video (telling about my situation) about what the finasteride did to me, if you have people who can mount the video and make inserts with graphics and animation please PM me.
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That’s great to hear. Unfortunately, we don’t have a production crew, though! 
Could you please post a member story in our member story forum using the template, so that we get the basics of your personal story? https://forum.propeciahelp.com/c/member-stories/20
Thank you,
N.
@Greek: Palladium here may be interested in recording a video.
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If there ever comes out a medication for PFS and they say “take 20mg a day” there would still be people on here taking megadoses of 500mg and wondering why they’re worsening their condition…
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I still don’t understand, we have a study incoming soon with result? Shouldn’t we wait for that until take the next step? If Baylor release their study in September then we rely on science which is what we want. Or have the foundation or moderators already got a glimpse on the result?
I don’t understand, before the community asked us to wait for the study and we waited and waited and now before the second study is on the way we need to take action?
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Another user and I have both expressed 2 different roads to get more funding
No one commented on them and as expected were ignored
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We can take next steps without Baylor
There are other angles that we have to hit in research
Combining all the results of the studies would tell us where to go afterwards
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I resemble that remark…
First of all, I am not sure if there is a study coming soon. People treat this like fact, but in the end this expectation is grounded on information passed on from a single member with a history of misrepresenting things. I am not holding my breath. It comes or it doesn’t.
Either way, we have waited long enough and preparing the next steps takes a lot of time. So waiting for the study and preparing next steps are not mutually exclusive.
Doing the things I mentioned in my most above is independent of any study.
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Sorry, lakehouse, but a “business plan” is not a road to funding. I mean, we understand very little about this condition. We are nowhere near a treatment/cure (i.e. a product). There are very few people who identify with this condition (i.e. potential consumers). We are a small community with an obscure, widely disregarded, complicated and poorly understood condition. Nobody who is largely commercially motivated will invest in this. We are still very much at the beginning of very basic science and nowhere near a position, where we can develop a product that one day may generate income.
That’s why this was ignored. It is just too vague and IMO completely unrealistic.
No offense, I think brainstorming ideas is important and it is only natural that most ideas will not be picked up.
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@lakehouse, I am sorry. I haven’t had time to read every reply here, I have been extremely busy with work these past couple of days.
I will try and catch up.
I have just seen Northern Star’s reply to you, I hope that it makes sense to you, but if you want to speak to me specifically, let me know.
I appreciate you thinking and trying to find new solutions.
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From that angle, I can agree with your logic. However, by curing PFS, is it not expected that we can find the cure to each of its SEPARATE symptoms AS WELL? How widespread and comercially promising are the ISOLATED issues like ED, mental well-being, insomnia, etc? It is not just us 300 WHO CAN BENEFIT FROM THESE OUTCOMES. How many out there suffer from “mild PFS”, be it A NATURAL DEFICIENCY CAUSING ANY OF THESE SYMPTOMS(“1 in every 10 men”) or CAUSED BY DRUGS that are not even aware of their condition? IMO we are talking about potentially taking over markets from CIALIS, Xanax, etc.
P.S. Even if we say the research outcomes could only be applied to us, we are a very desperate group of people and could raise large amounts fast if that was guaranteed to speed up the process, we are literally talking about the best years of our lives. Anything more than house mortgages per capita, however, will only come with a business plan. The way things are currently going donations will only come as warm as the annual address, and I cannot see on whose best interest that is. PS2 sorry for the caps, just highlighting my point.
But again, I am new to the gang, and what do I know about business or science? While we brainstorm I will keep my yearly donation and hope for the best while preparing for the worst.
Thanks for the space and wish us all better days ahead!
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It’s a fairly common belief that the numbers of people affected are much higher than reports would suggest. I think there are many people who don’t realise they have symptoms, or dont realise the cause of their symptoms.
As for development of drugs, we need to treat the cause, not the symptom. The things you mention might be able to be masked with treatments but really they are all problems which come from one central problem. Fix that and everything else gets better. What’s more, don’t fix it and you are vulnerable to further crashes and worsening, as we have seen many times here.
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I agree with the last sentence fully
But I extend that same thought to our dilemma here
Members funding will not be efficient
Members taking the survey will not be efficient
We can and should continue to make progress in these efforts
But without refining our unconventional campaigns methods, we are at mercy of a slow and painful process
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This epitomises what’s messing with PFS sufferer’s minds. The Science has made little progress yet they read weekly accounts of people recovering by taking ‘substance x’ or ‘substance y’.
It’s entirely understandable that people have little patience in waiting for any Scientific progress, and instead revert to following ‘protocols’ that people have said work for them.
Furthermore, I think the Coronavirus situation, and how little we still understand about the virus, despite the hundreds of billions of dollars being invested into research lends people to think that we have a scant chance of ever understanding the biological basis of our condition, let alone developing a ‘Scientifically precise’ treatment or cure.
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coronavirus situation goes through a lot of bureaucracy bullshit tbh
our shot has always, at least since this website took a turn, geared towards a more private solution
so instead of nasa its space x
coronavirus = nasa
if the tools are available, then we’d have a shot at it
This is an accurate description of events, yes.
However, the options available to people are greater than
- risk further damage to health
- wait for someone else to save me.
Finding a third option is what we need to explore. But I think it is extremely important that people think about what isn’t working here, we have already seen that people are most keen to go back to waiting for Baylor and continuing to run experiments, which as I laid out early on have been unsuccessful for almost everyone. And by almost everyone, I mean that the people cited are often the same accounts with doubts attached to their veracity.
In my opinion it should be small steps with this thing - rather than expect a miracle cure we first have to :
-
before anything else get this thing where it is recognized as an illness where it has an official diagnosis , a test , it’s in medical literature, even if there’s no treatment or prognosis at this stage just get it accepted into medical literature.
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then perhaps come together to pitch in and give money , contributions for research into treatment , trials etc
I honestly feel it’s a dead end situation looking into a cure and raising money at ‘this stage’ as from the medical industry’s point of view there’s no illness/ disease that needs curing …yet.
Once you get to the second point I made about raising the funds for research - we would have to look into what exactly is a ‘cure’ .
There’s plenty of ‘cures’ for depression right ? There’s probably 75 different anti depressants used for depression , if you take one of these will it cure you for depression ? Maybe , maybe not .
Is this ‘cure’ gonna be something like that - a pill like an anti depressant that regulates Allopregnanolone levels?
Is it gonna be in the area of Endocrinology instead and the cure will be something hormonal ?? Even though a lot of our hormonal levels come back as normal all the time !
I honestly think the ‘cure’ will have to be something eventually that’s in the neuro science field , it could even be a neurosurgery to fix this thing .
Anyhow just a few ideas here of course !
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Oh, this is totally understandable. But, obviously, the science has been slow, partly because people did not get behind it. The whole science track was driven by a small group of people. And while we are still far away from treatment, we have a better understanding of the condition and have a decent idea of what we need to do. At the same time, there is huge progress in epigenetics and related tools that may help us.
But I get it. Science is difficult, slow, expensive, unpredictable and there is no guarantee that it will yield results. There are always stumbling blocks as we have learned with the two biggest studies so far, which were/are disappointing, frankly. I understand that this is not an attractive proposition.
On the other hand, these out-of-nowhere recovery stories give the impression that recovery may be right around the corner. The next substance, the next cycle, the next “protocol”, the next “regimen” could be it. That is far more attractive, but it is also largely a delusion. As I said I have been here for eight years and have read threads back to the beginning of this forum. This has been going on for about 15 years and hasn’t yielded any reliable treatment either. “Recoveries” are typically stories from new members who show up out of nowhere or patients who have been suffering for a short time and probably recovered natural but attributed this recovery to whatever they did at this time.
I get that to new members it seems like there are recoveries and that’s what they should do instead of going on the very long road of science. But to me it is like Groundhog Day. The same thing is happening over and over and over again, just without the happy end. I wish people would learn from 15 years of forum experience and experiments that have not yielded any reliably effective treatment either. With that perspective, the experiment track is not really faster than science either, is it? At least, the science has made some progress, while the experiments still include substances that have been discussed for eternity. I mean, use the search function and look for Proviron and Tribulus as well as their first mentioning. At this rate, they will also be discussed in 2030.
Finally, both approaches are not mutually exclusive. You can try to get lucky with experiments and still support the science track. Surely, even the most ardent experimenters realize that there is a chance that they may not be successful and that understanding this condition better will give them better ideas on what to experiment with.
We have already lost a lot of time. I don’t want to be here in 2030 with new members still jumping on the same bandwagons and still without a sufficent understanding of this condition.
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None. I use Cialis for obvious benefits, but that’s it.
You will ask, how I expect to get better. I don’t expect to get better soon. There is no reliably effective and safe treatment for this condition. I have researched an endless amount of “recoveries”, “protocols” and substances that were suggested on the forum. None have a convincing track record. In the past I even collected data going through each story case by case, collecting the evidence and weighting the experience. It always ended in a dead end. More people should collect such data systematically and not focus on this or that story that fits their narrative or jump blindly on the next bandwagon.
The only things that can modulate symptoms systematically in some people are androgenic and anti-androgenic substances. For some reason a few individuals react positively to them ( at least temporary), but a comparable amount of people get worse, some significantly and permanently so. We need to find out why. But until we do it’s Russian Roulette, and I am not willing to play. Many people argue that they have nothing to loose, but they underestimate the reality of the most severe affected.
What we need is a better understanding of this condition to find treatment with better odds with regard to safety and effectiveness. Right now people just jump on random bandwagons with very poor track records. And quite a few got burnt doing so, including people of the staff. We even have some deaths in our forum membership attributable to failed experiments. That cannot go on. That’s why I am doing post after post to convince people that we need a more systematic approach to solve this puzzle.
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While we cannot rule it out, at this point it is far-fetched to think that solving our condition will also solve ED or Depression. Individual symptoms can be caused by various causes.
However, we think that solving (or at least understanding) our condition can give vital information with regard to other conditions and vice-versa. Prostate cancer is subject to androgenic signaling, of course. @Axolotl has made the link to Spinal and Bulbar Muscular Atrophy in his paper (https://www.propeciahelp.com/post-androgen-deprivation-syndrome-abstract/) and there are other overlaps. And, of course, we are convinced that all antiandrogenic substances can have this effect on predisposed patients (including certain antidepressants and Accutane). Unfortunately, this is all too vague now to be of any interest to investors, but we hope these links will help us convince scientists that this condition is worth exploring and may give interesting insights into human biology.
Thanks for your thoughts, your donations, for participating in our survey and make sure to participate in other projects going forward as well. Then we may have better days ahead!
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