It doesn’t matter how many years we are ahead, we got brain damage + chemical castration + life completely ruined because of a pill that everyone, doctors, fda etc. said was safe, all for a little bit of hair. Does that feel very advanced to you? And even when the cause is discovered, you won’t be suddenly magically cured, it could take decades till there is a cure, if ever. Besides, there will pretty much always be new people getting diseases like aids, ms, etc. Once finasteride is off the market or is known by everyone to cause PFS, nobody will use it, so there will be nobody new with PFS anymore. That is how we are similar to radium girls, do you see anybody rubbing radium on their bodies nowadays? Same thing with fin, there won’t be anybody left using it in a few years.
I’m not saying you should give up and stop trying things, donating, etc., everyone definitely should keep doing those. The alternative is probably worse and little hope is better than no hope at all. All I’m saying is this is how the world works and that the situation really doesn’t look very bright.
It is exagerated to say you are chemically castrated, brain damaged. You arent, its some imbalance. I guess you didnt experience any temporary recovery or youd know this.
We got fucked from fin because of corruption not technology. All the studies were flawed. Its not about advancement its about mankind.
As long as there will be people funding research on fin there will be advancements in this field, doesnt matter if the drug is taken out of the market or not.
If the alternative is much worse than donating in hopes for a cure, then why come here implying that its pointless to donate because chances are slim??
Dont you understand that withouth research we wil be in a much worse situation?? Do you prefer coming to this site in 10 years and read people talking about the same things over and over again or do you prefer to have a clearer picture of what is happening, maybe who knows even have a treatmrnt or a cure?? Because none of that will miraculasly happen withouth donations into research.
Ever since fin was developed youve got the human genome mapped and now you got gene editing knocking on the door with crispr. Lots of things changed and still are changing regarding understing of epigenome.
All you guys are doing with this kind of speech is bring hopelessness and diverting all the funds (even 10usd) from research into homebrew BULLSHIT or to some doctor. How much money have you put into treatments and doctors vanquish? To no avail…
Ffs we are talking about 10USD a month. Thats how much an illegal car parker makes in 30minutes in my city, to waste on heroin at night. How much money have you guys put into homebrew doctors and etc? How much more until people realize that we need this research to happen ???
Youre all looking for the finishing line, but you need to keep your head up and keep running it should eventually show up…
Well that is certainly an altruistic viewpoint. Donations are a good thing, no doubt about it. But I am relatively impatient and I would rather find an approach that may take a few years and that I’m sure will have a good chance of working. And it has been working, phenomenally. You don’t necessarily NEED to know the etiology or precise pathological mechanism for some diseases or maladies in order to find remedies to treat them. Effective herbal treatments have existed for millennia to treat a myriad of conditions. We don’t yet fully understand many phenomena and yet we make use of what limited knowledge we do have to fix things and solve problems. So while theorizing and reading papers may yield some insights here or there, I think if you’re impatient like me you may find experimental approaches more desirable. My life is completely different than what it was. I’m sorry it didn’t work out for you and others. If I were in your shoes I would probably have to hedge my bets on the results of research. I suppose the regimen I followed is not for everyone, and I believe I’ve made this clear several times on this forum. But to determine whether or not it works requires extreme dedication and discipline and that is no doubt lacking amongst many who have vented frustration with it after only a few lousy months. I am so glad I didn’t give up even though I had my doubts. Today, I ran up a small mountain in record time (yes I said ‘ran’ up) and I felt great afterwards, plenty of energy. Only a few years ago, this would have left me exhausted and feeling ‘crashy’. I have to tell you that focusing on healing the gut really did push it into the 75-80% region from the 60% region of recovery only a year or two ago. I just need to find out how to capture the remaining 20% and I will be sure to post something on this forum, replete with all the details and observations over this 5 or so year period. Good luck!
If you look at serious life threatening diseases you will see a minority manage to get cured or survive while the rest die or continue to suffer. PFS is no different to these different types of cancer. A minority will or have recovered from PFS while the rest continue to live with the condition and it’s side effects. Why did 4% of people survive with stage 4 Pancreatic cancer, what did those patients do differently to the 96% that died? Did they do squats and sprints 4 times per week, eat asparagus or fast 2 weeks at time. Maybe they took a series of herbs in a bizarre order or confessed to a priest once per week. A minority of people quite often recover from serious conditions and there maybe no explanation as to why. Some are just able to respond to the treatment but it is a matter of nature, probability and luck. With PFS, certain parties claim to have been cured by various protocols and then we have a generalized thinking that these said protocols are the key to curing all with PFS. No the protcols have simply helped a minority, the same minority that seem to get cured across a range of serious medical conditions. There is a list of names that I read on here of people who got cured from PFS who had something similar with their protocols and it was like 10 names. Ok so there’s currently 3944 people registered on this forum presumably sick with PFS. If you do the maths 10 into that 3944 isn’t even 1%, it’s a decimal number at best. Yet how many here have jumped on these protocols thinking they would get cured when the odds were massively stacked against them. You know the protocols by now so I won’t bothering name them. But is it any wonder that we still haven’t found a cure with this type of thinking?
I also question the guys who come on here complaining that they are sick with PFS yet can still get to the gym 4-5 times per week, but their life is so bad because they can no longer bench press the same amount prior to PFS. Then when these guys get better suddenly they hold the key to being cured are bouncing around the forum like a March Hare. Seriously if you are still well enough to hit the gym all week how can you claim to be seriously ill? If I could get to the gym 4-5 times per week but had difficulty getting erections with my girlfriend I sure wouldn’t come here crying like my world had ended. It’s that same obsessive behavior that led these men to take finasteride in the first place.
How many here would like some closure to PFS? How many would like to know exactly what’s happened to our bodies and know once and for all? I don’t want to die in ignorance do you? I’ve no doubt PFS reduces life expectancy for the worst affected cases here. PFS is a degenerative condition like old age, that’s not something that helps you to live longer. There are enough major studies out there that link declining testosterone levels to reduced life expectancy and other serious health conditions.
What age group does your testosterone level belong to? As I mentioned earlier, declining testosterone is a degenerative condition, and those who have this will age quicker regardless of how many pills and supplements they take. Testosterone is a major player in good health and longevity.
For the worst affected by PFS I would think they would want to know what’s wrong with them. We need to know what PFS is for the sake of our futures and to make proper planning. The Foundation will for certain find out what PFS is and what it’s done to our bodies. I wonder how many will take stock or comfort from this information when it’s announced yet haven’t donated a single dollar to the cause. I’d be fucking ashamed if I were amongst that group.
Understanding is the first step to finding a cure. Who would have thought that a medical Dr would lose his son to a prescription drug and then set up a Foundation in honor of his son’s life? We will find out the mechanisms behind PFS because there can be no greater motivation for answers than loosing your son. One day we will have our cure, the only thing that’s stopping us from finding out today is money. When AIDs came out it shook the Western world, it was heavily reported in the media and was talked about like some doomsday condition. Today AIDs is often reported with words like treatment and potential cure and people no longer have to live in fear of the condition. So for people to come on here and say the Foundation will not find a cure for PFS is unfounded bullshit and scaremongering at best. You have to question the motives behind suck talk and wonder what their agenda is. Peddlers of misery can be found in all areas of life and sadly they always manage to drag a few people down with them. When these people get to close to my car they always see my bumper sticker that says fuck you and keep moving.
No I dont think it is an elaborate scheme on your part. I just think that you are overhyping the potential of excercise and diet. You and cdnuts are a small minority of PFS sufferers that recover in a significant way. What you dont appreciate is that this is a serious disease that will only be solved through research.
The post above is basically a good example of what I dont like about your posts: You overhype the potential of homebrew while downplaying the potential of the foundation to make significant progress. Yes it will take years (how many we dont know), but your method wont work at all for the great majority of PFS suffers. It will only make some of the symptoms more tolerable. I support this “natural homebrew” (excercise, diet and regular sleep) method as well because I believe it is a reasonable band aid for many. [b]But I want more than just a band aid.
[/b]I would totally accept all your posts if you would remind people that the real solution for everyone will only be found via the foundation.
Also I am not advocating to donate half of your income. I am advocating for everybody to set up a reasonable monthly donation (minimum 10 dollars per month). Every PFS sufferer should donate monthly, just like someone who might be subscribed to another service will pay monthly.
I really cant understand these posts. They seem counter productive and self destructive. You admit that the foundation is the only hope for the great majority of sufferers (regarding PFS being treated successfully) but at the same time write a post that will result in less people donating.
You make many stupid and counter productive assumptions. Why not not assume, shut up and donate instead? Let the miracle of science and progress do its work.
1) Assumption 1: PFS is an isolated uninteresting/ obscure mechanism: How do you know? Maybe PFS is related with many different sexual, mental and physical syndroms? Maybe PFS has pinpointed a major lack of understanding in crucial body mechanisms. Maybe if we understand PFS we can solve lots of related syndroms and diseases (that also have symptoms like anxiety, low sex drive, constant fatique, and concentration issues).
Again your comparison to the radium girls or problems like tinnitus makes a massive assumption. Since PFS is so central and impairs so many bodily functions, maybe the better assumption is that it is HIGHLY RELEVANT FOR MANY DISEASES!
2) Assumption 2: PFS= brain damage. Again you dont know and it is the worst possible of all explanations. Funnily enough a researcher recently wrote that he thinks that there is a good chance of finding an effective treatment for PFS (he believes it is a resistance not brain damage). Again highly negative bias is resulting in self destructive behaviour. This assumption contradicts your claim that researchers probably wont find an explanation. If researchers wont know, why do you know its brain damage?
3) Assumption 3: It is highly unlikely we will find a treatment or explain PFS. Again: How do you know this? You dont!! I repeat: A researcher thinks it is likely that a treatment can be found. Especially if it is related to major syndroms and issues, we might solve it much more quickly than previously thought.
All of these assumptions will directly result in lower donations and less study participation. Basically your posts is self destructive because your post directly results in the method you admit is the only possible solution for all sufferers receiving less support.
I think you are anxiety ridden, self destructive and you have started to love self pitty. You have stopped trying to work for goals and basically have surrendered. If you expect us to surrender as well, I can only say: Fuck you!
In conclusion: The tiny minority who have recovered completely have led this forum astray. This is a serious condition, start acting like it by donating. If anything, your bias should be to overhype the foundation (which I am not doing btw), as it is the only solution that has the chance to work for everyone.
I’m not trying to discourage people to do anything. I said do what you think would help, as long as you are doing something, donate, try therapies, etc., which means these are the only little hope we have, so everyone should be doing these. I still try things myself, and post about it hoping that it helps someone. I hope we all get cured before we become old men with no use for their dicks anymore. I just find it hard to believe it’ll happen based on what I know and have seen in life.
Every once in a while I hear of a new miracle treatment for cancer or whatever, which they say will be available in a few years, and then never heard of again. In the modern world, things are made to make a profit, not to help people. And we are such a tiny minority that in a few years there won’t be new PFS patients anymore, and in a few decades we’ll become two paragraphs of text in a med school student’s book. This is what my knowledge and experience tells me, but who knows, maybe we’ll get lucky if enough people are doing something about it.
Totally missed our point. With posts like these even the supposed tiny chance (I dont believe its tiny) is eliminated because nobody will be motivated to donate. Think strategically you idiot. It does not work in the way you think it works: If you write highly negative chances on humanity curing anything let alone PFS; this will result in people giving up and donating absolutely nothing.
I have a totally different perspective: Before this century is out, many of the great diseases will be either cured or receive highly effective treatments.
Also: You are again making stupid assumption: Maybe PFS has pinpointed highly relevant mechanisms in our body. How do you know that these mechanisms arent interesting for other diseases? You dont! Most PFS patients are also very young (early to late twenties)! So we wont die any time soon.
Just recently a researcher working on PFS said that there is a good chance it can be treated. Again think strategically. If this is your only real chance, why actively post posts that destroy this chance?
Since you hate profits, do you want us to combine resources in a way that we are making massive losses??? You dont understand anything about how to strategically attack PFS and you dont uderstand anything about economics and the real world. I dont trust your judgement one iota. For your own sake, stop posting about the foundation, as you are ruining your only chance (as you admit). You have surrendered and want others to join in your misery.
Actually I’m far from giving up, I still try different drugs, therapies, and I’m not against donations either… As I said, I’ve only stated my opinion. I don’t see any benefit in arguing about this, hence this is my last post on this topic. People can decide for themselves, they aren’t children who need me or you to hold their hands. We’ll see what happens in 10 years or so. My criticism was on why this was allowed to happen in the first place, I think this is something we should all be asking from the authorities, we’ve used an FDA approved drug for cosmetic gains and ended up nearly as bad as a heroin addict.
What I am requesting is really nothing extraordinary. All I ask is that we are firing on all cylinders. Thus I ask anyone reading this, who has not set up a monthly recurring donation (in my opinion 10 dollar minimum), to please do so in short order. The foundation is led by a guy whos son committed suicide because of PFS.
After you have done that, continue with what you deem necessary. That might be fitness/diet, visiting a doctor or taking medications.
However pls dont put all your chips on the homebrew table. We all want to ensure that in 5-10 years we have enhanced the scientific knowledge in this field significantly. Donating means you enhance your chances. Donating does not mean that you might not recover before they find a treatment. Donating does not mean that you are wasting money. An explanation of what happened or a cure might be invaluable. Think of it like ordering netflix, only that you get something much more important. Dont overthink it!
Dont make this more complex than it is: you want to increase your odds of having a solution, you shouldnt dont put all your eggs in the same basket.
You can do your stuff and you can support research, 10usd a month like its been said, is not a huge amount of money, and is not going to be a huge diversion of funds from your diet, homebrew, suplements, etc. 10 usd is really Nothing, i bet many of you spend 20 times that per month on homebrew.
At the same time you can try your homebrew or doctors etc.
Its not like anyone is asking you to move a mountain really, or spend a fortune. Just increase your, our odds.
If you dont want to donate at least dont post stuff that diminishes the efforts or results of people who are scientists, and are trying to find a solution FOR YOUR PROBLEMS. Its arrogant, its narcisistic, it is pessimistic,it will stop people from donating and will only make you look like an ASS when results will be achieved.
Guys we should be donating. You have no idea how close we are to a treatment/cure.
A girl was cured from cancer using gene/cell manipulation just a year ago. And they are curing cancer using similar techniques in China since August.
Next year a trial will begin to cure a rare genetic eye disease in the U.S. All of these are getting the green light because of their effectiveness…just think where this
technology will be in 5 years. Theres billions of dollars being invested into CRISPR and TALENS. Not only should you be donating but you should also be reaching out
to researchers/doctors/companies/investors connected to this tech. This and Stem cell will most likely be used for the cure. But all the whining and saying theres no
hope will prevent that. Also the PFS studies will most likely end up saying that 5ar inhibition caused an epigenetic change in the body.
The absence of 5ar turned off a switch or multiple switches required for the body to function as pre-fin. Therefore we just need those cells and receptors to be
turned on and we already have the tech to do it. So donate and point everyone you can to this issue. Theres hundreds of researchers identifying genes and cells
affected in PFS and they’re working for pretty much nothing. Why? because they want to contribute a breakthrough in medicine and of course gain recognition.
Keep motivating them and let them know we’re counting on them. You just need the system reverse programmed. Its not that difficult.
Actually I am proof that you are not quite right there. I am 33 and I currently train 3-4 times per week fairly heavily. I can squat about 170, bench 125 and deadlift 215. Im holding muscle and i’m fairly jacked really. Still, rarely any libido. When i look at a women there is not a lot of difference to when i look at a tree or a lamp post. I still have a lack of zest for life and really feel like its all pointless.
Really this thread is all about ego, and i understand both sides of the argument. I also don’t feel a cure will be forthcoming any time soon (if ever) but i agree that science is definitely the best step forward. I’ve come to realise that everyone should donate just in the chance that it makes the difference. The science might actually help homebrew. Perhaps if something is pinpointed it could verify some of the things homebrew people have been trying and advance them.
One problem i have with the foundation is i don’t know how much money they have, I don’t know what they are thinking and what they are going to do with it. I actually agree with the path they have taken so far (not that i have any idea at all) but it seems more plausible than the gut health stuff that most people on here come up with. I just wish they said “come on guys we need 40,000 more for this study to be funded” - i think id then be much more inclined to donate. I’ll admit, i haven’t donated yet. Perhaps that is shameful and i’m thankful to those that have. I promise to donate after the Baylor study but id love to at least hear what the foundation are considering. I can see why they wouldn’t reveal this kind of thing but still. If they market it better i’m sure they could get heaps more donations.
This is the last writing from the Foundation from december 2016:
"Meanwhile, we have several new projects in the works for 2017, designed to increase PFS awareness further still. Chief among them is a more robust, multilingual website that’s on track for completion by winter’s end.
Needless to say, such expansion comes hand in hand with new and increased expenses, including language translation, email-distribution, video production and web hosting.
So as we enter the holiday season, I’m asking you to consider making a contribution to the foundation to help us reach our 2017 fundraising goal of $50,000."
I think that there is no medical plan for the future yet because they have to wait for Baylor and Italy to plan and run new studies based on their results.
I agree that there will be a increased motivation to donate if we knew what amount is missing and what the money is spent for.
Nice to here that you donate after Baylor too beacause - as you said right - the probability to receive a cure or an effective treatment is much higher throught science than by homebrew!
Stop overthinking it. Just set up a $10 or $20 or whatever amount you can afford monthly donation to the Foundation. If you have a Netflix subscription, you can afford this. You can’t expect other people to help us if we won’t help ourselves.
This is exactly the obsessive, over analytical behaviour I was talking about. Do people ask these questions when they donate to cancer charities or for children in Africa? When people walk past a charity bucket in the supermarket/high street and throw some change in do they ask “how much money does this charity have?” No. They look at the cause and if they support it they just donate. Dr Santmann the CEO donated $500,000 of his own money into the Foundation and you can’t spare $10 a month? $10 is less than 1% of your monthly earnings if you’re in a full time job earning the national average. If you have PFS you just donate a small amount of money each month that you won’t miss or have to sit around on a forum wrestling with your conscience about and that’s it. Those who wish to donate larger sums will but all those small amounts add up to something. Every study they do creates awareness for PFS especially in the medical community and this increases the chances of other researchers working on PFS. The opening page of the PFS Foundation now has quotes about the condition from 23 medical professionals pfsfoundation.org/ our donations are at the very least creating awareness.
People love posting about how Merck employees have blood on their hands. Of course, I wont disagree. However anybody not donating a small monthly sum, despite knowing how deadly (suicide) this condition can be, ALSO has blood on their hands.
Dude, i ve readunfe your posts… they are cocretee and focused tightly I dont knkw where are you from, but what i can tell is here in ltaly its been made a Victims Association with legalvv support , eveni for reach money (for the damages) . soon will be online the website. I hope it will inspire all peole like you, providing a real arm to use and stop the pasive mood.
If you want we can speak via skype one of these days.
