Why i'm not overly confident about PFS studies?

Those of you waiting and hoping for PFS studies to save us. My message to you is to be as proactive and exhaust ALL options as much as you can because PFS will never get the recognition of it being debilitating or devastating because it doesn’t in the outside eye cause life threatening consequences, no one gives a flying fuck really. We will go down as vain idiots, who got burned whether temporary or permanently for taking an anti-baldness drug for cosmetic gains. To them, it hasn’t directly caused blindness or death so it’s not that dangerous after all.

The PFS Foundation could find the cause of PFS, but not a cure. Unless Merck finds a resolution, if we’re not fortunate enough to recover naturally or by alternative means were fucked it’s us against the world. I hope we can all survive!

I disagree Danny that people will be as dismissive as that. Finasteride shines a light on the whole of the pharmaceutical industry which nearly everyone will at some point be exposed to. Our story is everybody’s story. It’s just in how we tell it.

I tend to agree with Danny Francis… People may feel bad for you but generally speaking nobody will be concerned. Can you imagine a charity collection for people with PF enough to take action. There are lots of other illnesses that people are more concerned about. We need to keep fighting ourselves for a better outcome in our lives. We won’t find it from external sources…

How would we expect to find a cure for PFS without knowledge of how finasteride has affected us? It’s simply not possible to conjure up a treatment without knowing exactly what to treat.

I know that we’re small in numbers, but that’s what makes it all the more impressive that highly knowledgeable and accredited scientists are actively researching this and have a genuine interest in ending our suffering. I would encourage you (and everyone else) to donate to the foundation. There’s a lot happening at this very moment – and how far we go all rests on the how much funding we can contribute. I could choose to give up too, but I’m not willing to accept my current condition as my fate.

I think you misunderstood my sentiments Davey… I travelled to Houston myself to participate in these studies and will do the same again. I will participate in every study but in the mean time I will be proactive and attempt to cure myself through a very strict protocol. I don’t believe that a treatment will come very soon through these studies so I’m going to take action. People are curing themselves through consistent and strict focus on diet and training. The research will eventually give us answers but I believe it will take a long time to get the answers. By no means am I accepting my fate. I abandoned the various protocols that people have found helpful and things have got worse and worse for me. Too much time will pass while we are waiting for these studies to provide answers so i am taking action in the mean time. That’s just my perspective Dave.

I would agree that a solution is not just around the bend. I’m not trying to say that we should all wait on the edge of our seats for the researchers to come up with a solution. If a treatment is ever discovered, then great. I completely support trying out various treatments on myself, and I’ve been doing just that for 7 years already – TRT, HCG, vitamin supplements, and many of the things that have shown any promise to forum members. Some of us find treatments that at the very least make our symptoms slightly more tolerable to deal with. Given the devastating effects we’re facing, even the slightest relief can make all the difference in the world.

Totally agree Davey… thanks for that. I think we are both arguing the same point

Anyone who thinks the studies will provide a cure is delusional. If that was the case MS, RA and other diseases would be cured.

Studies however will tell us what broke. Which i really want to know.

Most disease are never cured by studies or MDs. They are managed with drugs.

But nothing can manage pfs as its a hormonal disease and balancing serum hormomes doesn’t work! !!!

Surely if you know what is broken, you can pursue a way to resolve it. No reason to be so negative.

Going against being negative is against status quo for this forum. Having a negative outlook on life is what is contributing to a lot of these guys staying in this state for so damn long.

Look at his age: In his twenties and thinks he KNOWS that PFS cant be cured/treated.

Thats delusional and pathetic.

Fact of course is that he knows nothing and just is an emotionally out of control egomaniac, directly reducing the amount of donations to the foundation because of the nonsense he posts in this thread.

Why? Because he FEELS like it. Some very tough diseases have been treated, but he just KNOWS that PFS cant be.

I could just jump through this screen and kick him in the teeth.

At the same time, he wants to know what propecia did to him.

Well guess what genius: If you continue to claim that a treatment is impossible, people will start to reduce donations and you wont know.

Get a grip.

Everybody should be setting up a monthy recurring donation, however small, to the foundation (pfsfoundation.org/donate/).

To come here daily and wallow in your self pity while simultaneously actively working against the goals of the foundation, by stating that a successful outcome of their work is impossible, is extremly stupid behaviour. The arrogance it takes to come on here and state that a treatment/management for PFS cant be found, even after the mechanisms behind PFS are understood (via studies), is BREATHTAKING.

I have no problems if people try out new methods to reduce symptoms (diet, excercise, alternativ treatments, drugs). But: Everybody should understand that financing the foundation is key and that you have a moral responsiblity to do this.

Why is it key? Because detailed understanding will enable the search for effective treatment and help us with lawsuits against Merck. At the same time it will arouse interest with scientists working on similar/related diseases. The studies might unearth something that will increase the amount of research dramatically or they will find a relationship with other better researched diseases.

Fact is: YOU DONT KNOW! NOBODY KNOWS! SO STOP SAYING YOU KNOW and just set up this damn monthly donation. It doesnt have to be much, but lets get going.

Even if there is no cure/treatment, at least we will know what happened.

Just think! about the effects of your statement before you post it. Is this sensible? Is this advantageous to MY situation? Do I want to know what happened to me? Do I want researchers to work on this problem? How about this thread title: Despite initial doubt, I decided a small monthly donation to the foundation cant hurt. Wouldnt that be a more sensible thread titel?

On the one hand you say that your life is over, on the other hand you are unwilling to support the foundation with a small monthly sum.

Let me tell you something: The likelyhood that the foundation is successfull in finding effective treatments is MUCH! greater than you finding one in your parents basement armed with a limited budget and no relevant scientific background. Think about what you just wrote: You wrote that pooling resources and studying PFS at top medical institutions with researches that have worked their whole life in this field is LESS! effective than you homebrewing in your parents basement.

Its because of idiots like you, that decades were wasted on homebrew (sry to be so blunt). Dont you know the history of this forum and the PFS community? Dont you understand that homebrew like you are advocating has failed to find a treatment that works for a signficant amount of people? Dont you realise that the foundation is the ONYL! hope of PFS being taken seriously? Dont you understand that impotence, anxiety and all the other symptoms are taken seriously only the CAUSE (i.e. propecia) isnt. Dont you know that enormous resources are invested yearly into the sexual health industry? The foundation might bring us forward signficantly with their work in this arena. Not just for PFS victims but for everyone. How do you know that this case is not relevant for many cases?

THINK!

DUPLICATE

Let me repeat:

[b]

  1. Small recurring monthly donation (THAT WE DONT TOUCH)[/b]- finances competent research team at top medical institutions (potential to test and find treatments and explain PFS mechanisms).

  2. After! you set this up you can start homebrewing and supporting your body with whatever you deem necessary. But remember: Many people got worse after taking more medication. The best way to reduce symptoms is still excercise, diet and sleep as well as reduction of stress.

3. No fucking posts that hamper the success of the foundation by poo poing its potential and work. Thats like shooting yourself in the foot after you have been kicked in the balls. Again: THINK! Who has a better chance of understanding and finding a possible treatment for PFS: A research team at a top medical institution or you in your basement all by yourself with no relevant medical knowledge.

On whom would you bet, if those two possiblities are presented to you? Team medical institution or team anonymous poster on a forum living in the basement of his parents house…

  1. Yes a treatment/ explanation wont be found over night. Yes the time it takes is measured in years not months. But dont kid yourself: You wont find a cure yourself any faster. Thats just wishful thinking. Your body! might achieve healing. But not you in walmart, shopping for homebrew treatments…

Another way to look at it:

Do you want to fight PFS with all tools or just one tool? If with all tools you support the foundation AND support your body with your own “homebrew” methods.

Its stupid to basically discard the scientific method and go all in on homebrew(which has failed for over a decade, despite what some might tell you), when a monthly donation doesnt have to be huge.

For some it might be a form of greed: They hate giving to the foundation if they dont immediatley get something concrete in return. If thats your instinct, switch off the monkey part of your brain and try to think about it in an strategic/intellectual/ logical! way.

Great post. Conditions like HIV can now be treated much more effectively because of scientific research, rather than sufferers stumbling across scientific breakthroughs in their quests to heal themselves. We have to take the same approach with PFS and support the Foundation and its research efforts; that’s the only hope. And yet people still persist in spending lots of money on finding their own "home-brew’ solution, living up to Einstein’s definition of insanity - i.e. doing the same thing over and over again and expecting different results. I am of course not saying that sufferers should do nothing: I’m trying to have a really healthy diet and lifestyle. But my hope is that once researchers know what has happened to us they will be able to find effective treatments.

And let me add one last thing danny_francis:

Dont expect me to take you seriously, when you wont set up this recurring monthly donation. I think you deserve to waste your money on homebrew doctors, when you havent done this. I will laught at your self pity posts from now on, if you refuse to fund the solution. Same goes for douglasmich.

The entire forum should ignore your posts from now on if you refuse to help. Basically we have real men, fighting at the foundation for the health of current and future PFS victims. Then we have danny and douglas, wallowing in self pity, and poo poing the work of real fighters. Shameful and pathetic.

The least we can do is support them.

Give it another year and PVDL will go from, “Oh I think I will exercise now and avoid sugar and such and such and oh by the way don’t forget to donate to the foundation” to “I can’t wait any longer for the foundation… I need HOMEBREW!!!”

It’s alright peeweeDL, eventually you’ll get it too.

No, I never said that excercise and avoiding sugar is not a good idea (it makes symptoms more tolerable). I do however challenge your theory, that it is a cure. Your claim is that people who arent cured yet, just arent pushing weights enough, or arent dieting strict enough. At least thats what your lack of support for the foundation and brown nosing of homebrewers implies. Apparently the above distinction is too much for your tiny brain to grasp.

What I despise is people actively discouraging sufferers from donating to the foundation. Especially because its not an either or. You can excercise and homebrew and donate.

If you are already cured bizzbee, why are you still here? Nobody in their right mind believes that your are. Your violent reaction against me and many others not buying your homebrew cured me thesis, shows that you actually dont believe it either. You arent cured, you know it, I know it, the rest of the forum knows it and it terrifies you that you arent. I believe in fighting. That I can respect. But you are a liar and actively working against one of our best hopes, the foundation.

I wont engage you further, as past interactions have shown me, that you are a sociopath and extremly primitive.

Bizzbee has PFS since 2003. He has been homebrewing for at least 3 years.

Now isnt bizzbee the perfect example of the failure of homebrew and the need for real research to figure out PFS:

  1. Has PFS for over a decade!
  2. Still posts on this forum.
  3. Goes into a rage whenever you question the truthfullness of his claim that he is basically cured.

Anybody believing that this maniac actually stumbled upon a cure, must be extremly naive.

The guy comes on here to convince himself that he WILL BE CURED with his methods. His rage against posters like me, shows that his method is failing to cure him, and he knows that its failing.

PFS must have really taken a toll on him. Poor guy has it since 2003.