Thank you. What is this study aiming for?
Baylor will hopefully give us DNA level information
Suspected theory is dna methylation (gene silencing)
Hopefully Baylor confirms and we move forward
Suppose some genes are methylated. What can we do about it?
I’m sad that this discussion has ended up back at Baylor and how can we individually fix this.
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But what can we really do? We are not scientists.
That’s exactly the question we have to ask ourselves. We are not scientists. So, we need to get scientists involved. But scientists won’t just knock on our door to work for us. So, we have to find them. The forum staff and the Foundation are working on that. But to get scientists to work for us, we need money. And we need to raise awareness for this condition.
- So, save money. Because the day will come when we will need as much money as we can get and you better have saved for it.
- If you have access to significant amounts of cash, contact us directly.
- Report your symptoms to the authorities to raise awareness of this condition with them (see: https://www.propeciahelp.com/report-your-propecia-side-effects-to-drug-regulatory-agencies/)
- Inform your doctor of your condition and use our patient resources: PFS resource pack: letter and study abstracts for your doctor
- Volunteer in our YouTube project and tell your story: YouTube Video Project: Guide, Template and Submission Instructions
- Offer your skills: You have social media skills, statistics skills, anything that can help? Cool, contact us!
- Motivate other people to do the same.
If hundreds of people would do that, we would be further ahead. We need to be heard. People just don’t know we exist. When there is more awareness, we will find all these people who have these symptoms but haven’t made the connection to these drugs yet. More people -> more resources -> more interest from scientists. And, obviously, we think this is a public health problem beyond just Finasteride. When awareness of this increases, so will interest to study our condition. But we won’t be heard, when all we do is discuss Tribulus for the hundreds time. I am not saying, do not discuss it, but do some of the things above as well.
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This is the approach I have completely [my edit ofc] and I feel the very very best summary of the thinking I subscribe to. Well said.
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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