Why i'm not overly confident about PFS studies?

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.

And the point is that nothing will have happened without our support. But you are right, lets hope everyone makes a correct decision.

This will be my last post in this thread.

Lets keep it real:

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! :stuck_out_tongue:

Good luck to All.

Guys lets get real.

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.

Good luck to you all

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.

pfsfoundation.org/donate/

1 Like

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.

I guess it takes a special kind of stupid, to be a pfs victim and quibble over a tiny monthly donation.

1 Like

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.

1 Like

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.

Best Regard

I saw this trailer yesterday, they made a movie about radium girls. It’s similar to our situation in many ways…