US research studies

Science PFS Research
#21

It is dispiriting to learn that we have to reach in the high six digits to get through these vital studies, and even worse to learn that even now hardly anyone is donating. People would seemingly rather pay ten grand to some guy to stick leeches on their dick after they heard about it on the forum than commit to a longer term project with recognised scientists behind it. I know it’s tough to admit to yourself how complex this problem is, doesn’t mean you should avoid attempts to try and figure it out and be duped by someone offering a fake easy fix.

Even a sum of a million should not be beyond us really given the total gravity of the situation, it would basically amount to twenty dollars a week from a thousand guys. There have been more than a thousand nightmare stories on here. I think it’s time that everyone on this forum showed, or was made to show, a greater commitment to this problem from every angle.

I should add that if anyone thinks a lawsuit win will fund this, I don’t know the status of the lawsuits but I do know that Merck will appeal again and again, and in the case of Vioxx they didn’t pay up for about five years afterwards. So this is the only thing we have for the forseeable future.

#22

there is no doubt, whatsoever, that the pfs foundation is our future, and quite possibly the only chance we will get of having a happy life again

#23

It’s just human nature. People want to be cured now, not decades from now. If someone says they saw results or were cured from method X, that is a real, tangible result and there is a chance, however minuscule, that it could help or cure the person reading that story as well. On the flipside, when they read about the foundations’ efforts, it is all very nebulous. “This helped/cured me, it might help/cure you” is an easier pill for them to swallow than “please wait indefinitely.” Especially if the person has been suffering for a long time and/or with extreme sides.

And before people jump down my throat, I know why the foundation is slow and information is sparse. I get how research works. I’m just trying to illustrate why people jump on these other bandwagons. Personally, I eventually donated to the foundation because regardless of my personal feelings toward it I think the research is important for the future, however I’m not holding my breath waiting for the foundation to cure the condition. On a long enough timeline I’m sure it will, but a cure being produced when I’m 80 doesn’t do a lot for me. So I’m forced to continue trying different things, hoping I happen across something that knocks everything back into place.

#24

@cap

i get you. i just want to add one thing and then i am completely done here. you mentioned " a cure when i am 80 will do me no good". this is not the first time that i have heard this line of thinking on this forum.

the simple fact is, no one, NO ONE, has any idea what the research will yield, where it will direct them next, or what matches or possible ideas will come from it. who the hell knows… if something grabs them in this next round of studies, it may point them in a seriously promising direction and speed the whole thing up in a big, big way. … again, NO ONE KNOWS!!!

all i am saying is, we need to drop that frame of mind, and accept that the pfs foundation if BY FAR our greatest chance of healing ourselves, and that any negative line of thinking that is only opinion and completely out of our control, is dropped. we have to treat this in a positive fashion, and grab the bull by the horns on this one. we cannot screw this up.

thats it. these are the facts. i have nothing else to say here.

#25

Even if they figured it out tomorrow, it would be years before the results were verified, published, treatments developed, etc. The foundation is important, I absolutely agree, but in addition to donating to it, everyone should continue to try different things that may get them better. Don’t sit around waiting for the foundation to cure you. It’s not going to happen anytime soon.

#26

again, you completely misunderstand what i am saying

no matter … i need a serious break from this forum i think … it is just soooo unproductive here

good luck to everyone, please do what you can to help the foundation

feel better

#27

There has been some amazing progress over the last 24 months and numerous projects are underway. For the first time ever we have actual data to move on and numerous avenues under investigation with the real potential for an actual treatment. It would be nice if people understood enough to get excited over that instead of being brought to tears of joy over unconfirmed claims from guys in the theories section for this or that treatment. We all know how that always turns out. Why guys continue to make sarcastic remarks about the research is really beyond any explanation.

#28

Today, I made my first contribution to PFS. I would do so every month going forward.
I decided not to spend any money on any treatments and still willing to bear the pain.

Still, I am not opposing anyone who would want to try his own treatments which make him feel better.
At the same time, request a little contribution to the foundation.

I have a little suggestion to the foundation:

We may not understand the technical aspects of the research. However, if we will be shown how much funding a particular research requires and how much has been contributed, will make the donations really quick.

(Wikipedia example: (They get more than $5M in little more than 30 days). We may not have so many users who can contribute, however, this approach of showing the bar on the website will surely pull in some extra funding).

I am also trying to reach some bigger organizations which fund some health projects. But, at this minute, I have lack of data to show them to assert this point. Suggestions welcome.

#29

I make a US$75,00 donation every month. It’s not much, but it’s what I can give for the time being.

#30

We’re all here because of Finasteride. If you were willing to pay a monthly price to be prescribed that poison there is no excuse for not contributing to the PFS Foundation.

Whether the contribution is big or small it all adds up. Don’t take the foundation for granted. We are lucky to have it as a means for us to channel and pool our resources. If we want to be taken seriously we need the foundation to be a success. Things will move even slower unless we all contribute - if you can’t raise media awareness then donate, if you can’t donate then try to raise media awareness, ideally do both.

There isn’t enough interest in our predicament for us to be complacent and expect others to pick up the slack, for now it is down to us to ensure that the ball continues to roll and builds momentum. Once this is achieved some real progress will surely come.

You’re on here because you want to get better, donate to the foundation so that the necessary research initiatives can help us get there.

#31

I think the two main reasons people aren’t donating are:

  1. that they think they will somehow get lucky and come across some magical treatment and get cured on their own (which they won’t)
  2. we are sort of left in the dark as to what is happening with the foundation and research, i.e., not having a single update since the conference in Italy

Even so I have made a pretty substantial donation and I plan to again in the future when I can afford it.

#32

[quote=“dgreene”]
2. we are sort of left in the dark as to what is happening with the foundation and research, i.e., not having a single update since the conference in Italy
/quote]

Everyone must understand that lack of updates does not mean lack of progress. The foundation must be careful about what it announces since the likes of Merck are no doubt going to be monitoring the progress of the research initiatives and the conference in Italy. Unless the foundation can deal in absolutes it is too dangerous to share info that has not been certified.

One or two forum members have expressed they have been privy to information that has not been made public as yet so we must have faith that things are moving in the right direction. It’s frustrating but we must be patient.

#33

Everyone is so quick to bitch that they think no one is donating, but how do you even know who is and is not donating!?

The foundation obviously is not going to release any information on how much $$ is currently being generated, so why should we expect people who are donating to come here immediately and brag about how much they donate???

Prior to now, I have not disclosed any info, but I can assure you that I and at least 5 others who do not come to this board have donated and will continue to. Also that does not mean that we are not going to continue to look for alternative options as well. The two are not mutual and do not affect each other.

#34

Hi Moonman,

I just thought it may provide a bit of positivity to the forum by letting members know that donations are coming in. It has nothing to do with bragging - as I’m sure we can all agree when you’re suffering with PFS the trivial things in life such as that hold no relevance any more. I just don’t want people to lose heart (myself included) because info on the funding side of things has been sparse.

Thank you for contributing to the foundation.

#35

I agree, but it should be done like the following
allthingsmale.com/forum/misc.php?do=donate
A graph or real-time tracker of how much has been donated.

Not by expecting individuals to come post how much they donated every time they donate.

The Phoenix Rising Foundation, which is also a 501©(3) non-profit organization has a similar set-up…
forums.phoenixrising.me/index.php?donations/

#36

From what I’ve recently heard, a lot of information is being kept secret because of the fear of what Merck would do to try and stop us. So have confidence in the foundation and donate. Its our only chance. And for those who may see some improvements or think they may be cured, just remember people have felt cured for months only to have their symptoms return. The only way you will know if your body really is back to normal will be via the tests, etc. The research will also probably indicate possibility of passing problems down to children. Babies may be born apparently normal, but you don’t know what could happen down the road, i.e. when the child hits puberty.

#37

How much sick you have to be to prevent people from curing the illness that you have caused ?! Oh men, if we don’t get better in coming years Merck simply must pay for it! I’m so sick of these (pharmaceutical) corporate bustards that are, from day to day, looking for way to beat George Orwell’s imagination.

#38

No offense, but that is wild speculation.

#39

Lincoln28 I total agree. I just had a son born in Feb Of 2013 and have asked a researcher involved in these studies if its something I should be worried about and he reasured me that I shouldn’t worry about it and that not all epengentic changes are inherited. As far as my son goes he is a perfectly health baby boy, as far as puberty goes I guess I will just have to wait and see. At this point I figure I have two options one is to sit here and mope about the future that I have no control over or the second is to just deal with what future throws at me weather its good or bad at least I will have a few good times…

#40

I might be oversimplifying it but since normal AR function is necessary for the development of male characteristics during development even before birth you’d think since things look “normal” now that’s a very good sign. It’s still possilbe to pass on epigenetic changes. If PFS is epigenetic and potentially inheritable I wonder in this case if he inherited a normally functioning AR from his mother?