As somebody has already pointed out Dr. Michael Irwig says in this interview that they should hire “independent researchers who have not received money from pharmaceutical companies because there is a potential conflict of interest”. The Foundation in my opinion has been naive and spent money we can’t afford to waste.
I won’t go into the Harvard study there’s been plenty discussed on Solvepfs.
Okay. Maybe you can write an email to the foundation and list your worries as well as make suggestions for future studies. They will eventually get this right. We have to believe in that. We have to see this as a team effort, and help out the foundation, if we believe something went wrong.
Good day.
Yeah, eventually I’m sure…they’ll get it right eventually… meanwhile think about a little home-brew…
Haha thanks bizz.
I am actually doing a little homebrew in the form of workouts and a healthy diet …
One thing I can say for sure:
Big pharma loves the FDA, as it destroys competition from smaller companies by dramatically increasing costs of bringing a drug to market. Thus I better hope that the hate I see here for big pharma is even more intense when it comes to the FDA.
I guess I’m old fashioned, but trusting the same medical system that fucked you over and left you in the dark to suffer, to find a cure or someway of fixing you, seems like like putting gas in a leaky tank.
Another thing I’m sick of seeing is people talk bad about or shame people who aren’t donating to the foundation. It’s not a requirement and nor should you get any privilege for it. Home brew has worked fantastic for me and others, yet I continually see this quote from certain users that it has “failed for a decade”. Maybe I’m just a blooming idiot, but I see plenty of people who succeeded. Personally talk to quite a few of them regularly. I would prefer to not give the same worthless western medicine system which fucked me over any more money to consistently let me down. That’s my opinion and all your shaming won’t change that.
I’m not here to preach or put anyone down who differs in opinion from me, just offering my .02.
Max, maybe for you it was time, or it was what you did or maybe the fact that you just caught it early enough to stop it (stopped in february wasnt it?). But some guys did the same and they haven’t recovered. Research is for those guys
Its not about ashaming people or preaching to them. People donate if they want, but out of respect for those who donate and those who made/make an effort to make these studies happen, it would be fair that the others avoid negative comments around the very same thing that gives those people hope. You might be destroying whatever little they have to hold on to. Doing that is NOT COOL and you will always get people telling you off for that.
Even if the studies dont show anything, isn’t it the right thing to support a battle against the big pharma industry who freely kills people everywhere for profits?
This quote is from your first post:
But look at your last post below:
…
Michael Douglas tried every “home brew” treatment you can dream of, even fecal matter transplant. He died at the age of 21.
We donate to the foundation to try to understand what killed him and others like him, to help prevent further tragedies, and to develop treatments for everyone who is suffering to whatever degree.
I’m not saying that you don’t have any right to do so - and you’re correct on my first post on here I said I would donate to the foundation, and I did so my very next paycheck to the tune of $50. I don’t have the e-mail receipt from PayPal handy nor am I going to dig back to February to find it, so either take my word on it or not, I don’t mind either way. And again, just stated my current opinion… however I definitely changed my stance the more I looked into recovery and what things in my life I could change to help benefit myself. It’s not that I don’t think the PFSF is a good cause or well run organization, I just don’t have any faith in medical researchers and such anymore, and it’s way too easy for big pharma to skew results anyway they want in clinical trials. Again, purely my .02.
And you’re right maybe my recovery is natural and maybe I caught it in time, I can’t tell you for sure really and neither can you, and I never said it would work for everyone…I literally just said to say homebrew is a failure is not accurate. For some it may be, for some it may not. I’m sorry that fortune wasn’t on Michael’s side to recover, however his case was probably the worst on this forum due to issues from AIs (not PFS) that me or you haven’t had to face with PFS. I think using him as an example of homebrew failure is a little extreme with all due respect.
And you claim I’m destroying hope that people hold on to? There’s probably people out there who could benefit from home brew who will never touch it now because certain members (not you directly) say it won’t work. That’s just as bad as someone like me sharing an opinion that doesn’t line up with the PFSF. You’re entitled to defend the foundation, I’m entitled to defend homebrew. We don’t have to agree on it…I think we both want the same result in the end anyway.
Wait a minute: You cant just take one example of where the medical system fucked us over and ignore all its successes. Thats illogical and emotional nonsense. Of course we have to bet on science, when homebrew didnt work in our cases. I never said that nobody will recover. Only that the majority doesnt, despite the fact that they tried all your homebrew. And btw: Science is the only method to explain what happens in the world. You seem to suffer from technophobia and you seem to be anti science. Well let me tell you one thing: Nobody will cure cancer, aids, alzheimer etc. pp. with your attitude that science sucks and that we only have to eat a healthy diet to cure those diseases. Get your head out of the sand.
Also I find it more than arrogant to come on here, being one of the lucky ones who recovered apparently very quickly, and tell those who are affected much worse than you, that they are naive in supporting science and being realistic about homebrew. Again: For many it doesnt cure them and those who recovered might just be lucky. I never said, dont have a healthy diet or workout. Those are good at making symptoms more tolerable. Cant you get that through your skull: We want to push on all fronts. Its not an either or!
And Im sick of people like you who are actively working against the foundation, by spreading conspiracy theories and treating PFS like its some small disease that can be cured in the gym. You arrogance is incredible. You have PFS for a few month and want to tell people who suffer much more severely than you for years, that they just need to work out more?
Would you behave in such a way on a cancer forum?
Again: I encourage people to eat healthy and work out, but I stress the importance of science.
And btw: Of course its shameful, if you want to have research done and have the money, to not at least contribute a small sum. If you are against research or already recovered or if you only want to bet on homebrew, thats another thing.
I find it curious: I always empasise that all members should pursue natural homebrew (workouts, healthy diet, regular sleep). I also stress the importance of the foundation since natural homebrew does not cure many cases. Thats so very reasonalbe but you always get the homebrewers whining about a realistic perspective on homebrew. But they have no problem completley discrediting science, the foundation or any effort to understand our condition through studies. They really do their upmost to crush momentum in that direction. If I would be as vicious about natural homebrew like you are about our efforts on the foundation side of things, you would be screaming bloody murder.
First off I’m not recovered. I’m progressing that way, slowly. But let’s address a few things:
First you are just as negative regarding home brew and how it has “failed for a decade” that it literally used to be your signature (unless I’m getting you confused with someone else, then I apologize)and showed in everyone of your posts. Don’t take the innocent, non-biased “high road”
I also have better things to do than write a soliloquy akin to you as to explain that I was simply expressing my opinion. I didn’t like western medicine before PFS, and if that makes me ignorant then so be it. I also didn’t tell anyone to do jack shit, I’ve just told people what has worked for me. I also POINT BLANK admitted I don’t know if it will work for everyone. I don’t care if you try it or agree with what I’m doing, because frankly it doesn’t change my life one bit.
I also haven’t “spread” anything negative about the foundation…I “spread” negative things about big pharma and the current research environment for medical trials, IN GENERAL. I actually clearly stated that I had nothing against the foundation and that I thought it was a well organization…how is that hate? Before you get butt hurt and ramble on, please READ. As a veteran, I don’t donate to the Wounded Warrior Project either - I’m just of the personal belief that you have to cause positive change in your life yourself, so I don’t give my money to others to do what I believe I can do myself. NOTE, THAT is MY OPINION, nothing but opinion…I’m not saying everyone else should believe or act the same way.
Jesus dude, did you even read MY POST? I never once said “screw the foundation, homebrew is the only way!”…inliterally just shared my opinion. Which you obviously have a major complex regarding people having different opinions than you. Quit acting like a pampered college student and expecting everyone to agree with you and realize in life that not everyone thinks like you do, it’ll serve you well.
You didnt say it directly but the post had the effect.
By saying that science cant solve this (i.e. western medicine sucks) you effectively are saying that the work of the foundtion wont bear fruits.
I am not biased against homebrew. I am realistic. If being realistic is being biased, then ok. I encourage people to do natural homebrew, as it helps ease some symptoms.
Yes you are correct. I had it in my signature, that homebrew has been tried and failed for a decade. And I believe that is true: Homebrew has failed to deliver a cure to the vast majority of people. Many who recovered only claim that time helped them. Some said that homebrew did. If we take this at face value, we have to conclude that homebrew failed to move the needle when it comes to recoveries. Why do you think that the recovery section is so desolate?
I think that you always try to hide behind the phrase: Its just my opinion. Well frankly, thats not enough. Think about the effect of what you are saying actually has. If you think science sucks, you indirectly are saying that the foundation sucks. If you say that all studies will be corrupted by big pharma, you are saying that the foundation cant succeed. To then hide behind the fact, that you didnt come out and directly bash the foundation, is kind of ridiculous.
I on the other hand actively encourage natural homebrew, as it eases symptoms. I think anyone who takes a realistic view will concede, that natural homebrew will completley recover at best only a minority. I dont think I am bashing natural homebrew in the slightest. You on the other hand actively discourage people to donate. If you would say: It is vital that we support the foundation while trying other stuff, I would have no problem. If you would stop bashing the foundation in study and foundation related threads or in general, I would have no problem.
Also: Do you see me actively posting in new threads created about homebrew to bash it? No? So why cant you return the favour and not post in foundation related thread to bash the foundation?
If I can support natural homebrew, even if I admit that its a low chance probabiltity, why cant you do the same for the foundation.
We can go all day back and forth about this but it doesn’t change we come from opposing viewpoints and I highly doubt that will change. Let’s just save ourselves some time that we’ll waste doing so and agree to disagree.
But why do you feel the need to bash science and the foundation in a study related thread? Isnt that counterproductive, even if you have no confidence in medical institutions? Isnt it better for a PFS sufferer that the foundation exists. If yes, why would you bash it viciously? I have no problems with productive criticism of the concrete study or suggestions of how to improve their work. But what you do is dumping all over the idea that science can solve anything.
It wont make homebrew more likely to recover you. That much I can tell you.
Do you see me bashing homebrew in your threads? Why cant you do the same for the foundation?
Again: I encourage natural homebrew. Pls stop with the bashing of scientists that are trying to help you. The ceo of the foundation lost a son to PFS and you bash his work? Dont you have any decency?
Ive already answered your concerns. In my previous post. As far as your last line goes, once again I never bashed the damn foundation or his work and I’ve pointed this out to you multiple times now. Quit making my statements more than they are. Have a nice day. Just let it go and agree to disagree.
Ok. Lets agree to disagree. I never wanted to discourage any natural homebrew. Just to make that clear. I only state the obvious: That its not a cure that works for the vast majority and that thus research is needed.
Well I think you did, but its ok. I probably have also sometimes overstepped my case in regards to homebrew, despite it being a good band aid and maybe even a cure for a lucky few.
Nevertheless, I will leave you with this quote of yours. Think about the severe PFS sufferers and the ceo of the foundation, who lost his son to PFS and is trying to help us, next time you deem it necessary to write something like this:
I wish you continue success in your recovery.
Lets push on all fronts.
I think that we all have a collective responsibility on this site and some members don’t need much to have them reaching their wit’s end. Therefore what we post is important. Irrespective of whether we bracket a statement with the small print that it is merely our opinion, anything that can evaporate hope or lead to someone giving up on the foundation should be called out. In a community that has experienced so much death and suffering, there should be an acknowledgement that for some lifestyle changes and protocols haven’t improved their lot and that for the whole community the foundation is vital, at least for the preservation of hope. Yes, we all have the freedom to post what we like, but to present the foundation and our own efforts as mutually exclusive, and to express that your desire to donate to the foundation has dissipated as your own health has improved under the notion that All Pharma Is Rubbish comes across as the selfish postulations of someone who is currently of the mindset of “I’m alright, Jack”. Big Pharma is shit, but we have to work with what we’ve got. Otherwise we have nothing.
What the hell are all of you talking about? What the study seemed to indicate, which is what yours truly has been saying for 5 years, that we suffered neural changes due to finasteride, and we may have had some pre-exhibiting neural abnormalities, so as I have been saying it truly is “all in our head” this was groundbreaking
Wow, was I the only one on this entire site who said it was a neurological affect? Kudos to me!
Agreed with this ^^ roflcopter
Retard checking in; can someone explain to me as to how it is neurological and yet some people suffer drops in T?
At least this study does provide closure (in my mind at least) about not going on hormone therapy.