This may come off as beating a dead horse or wishful thinking, but I really think we should meet about starting a fund to promote PFS research. I don’t even know if we have such a fund already, but I’m new to the PFS community. The fund could not only promote research but it could also try to reach out to sufferers who may not even be aware of the condition.
There are about 2200 members on this site and if each member donated 1000 dollars that would be over two million for research. In the research world that’s not huge money but it is a start. We could also try to get donations from friends and family members for the fund.
We really need to raise awareness to increase our numbers. It wouldn’t be unreasonable to estimate that the members on this site are only about 5% of the total number of PFS sufferers. If we increased our numbers to 50,000 organized sufferers we might actually be able to make a difference in terms of getting this horrible condition cured.
There doesn’t seem to be much organization in the PFS community. Do we ever have seminars or conferences to discuss future developments or anything of that nature. If not, I think it would be a great idea.
This whole post is unorganized and not very focused, but I think it calls attention to some important obstacles we need to overcome: Lack of organization, lack of awareness, and lack of recruitment.
That’s good to hear man. I have a feeling that if we band together and think positively we can beat this awful condition. Maybe not in the next five years, but certainly in the next twenty or so. I think it would be helpful to meet face to face with fellow sufferers. I know that they are here online but it just seems so much more reassuring to talk with people in person who are going through the same thing you are.
When the fund is ready, every penny that I can spare will go into it. Even if I somehow recover I know just how horrible this condition is and will do all I can to help other sufferers. My symptoms are pretty moderate (no complete numbness or anything, but some ED, moderate glans numbness, weak erections and out of whack hormones etc.) so I can only imagine the hell that the really unfortunate sufferers are going through.
At the same time, we need to keep our condition in perspective. It is not an imminent death sentence. While it may cause some life-threatening problems further down the road, at least most of us are currently able to live semi-normal lives and function as productive members of society. And thankfully brainfog (considered by many to be the worst symptom) does tend to improve with time. We can also find solace in the fact that many of the conditions that may arise due to PFS (osteoporosis, diabetes, Alzheimer’s, etc.) are becoming more and more treatable as the years pass.
Anyone can feel free to private message me if they need any support. We are all in this together and we need to treat the anxieties and worries of our fellow sufferers with patience and understanding.
SA, why do the vast majority of us know nothing about it? Fin2007 is right, I have been saying the same thing here like a dozen times and been largely ignored thou. No PM’s from mods nothing, everything is in secrets like its the F’n CIA here or something what a joke. Either the people who are running things around here think the vast majority of us are a bunch of idiots or they don’t trust us worth a shit.
90% of what has been done so far has been guys largely acting alone.
If you know something I don’t then great, you’ve been on this site less time than me and you’ve done quite abit and thats admirable but all this secret business is ridiculous.
I go to a scientist at a major research unversity, post her name up here the mods remove it then call her up themselves. Makes me wonder if some of the guys here are looking for some kind of glory when shit is solved finally, wanting to be the one who broke the puzzle or something.
I know you did SA, but that thread died and was never heard from again. At least not openly.
Ok, I am going to try to not get angry about the situation as I did above but I am going to be honest. Who exactly is we? Is it you Mew? Who else? Awor? two or three other guys you have on the “inside”?
When this site was started by whatever parties involved regardless if those parties like it or not they have taken on an assumed leadership role by default. Like I said they (the site creators) may not have wanted this but by starting this site shows you want to organize people and spread awareness to get help. This implied with it some level of responsibility, unfortunately that responsibility while not written anywhere does imply some things. You provided people a place to learn about this condition and gave people a place to come to, to discuss the problem. People come here to share their story and foremost to look for answers. Granted there are none at this time, many of us come here and hope that one of the various proposed treatments may work, more often than not they don’t. People being what they are try and try again. Eventually many burn themselves out and do not come back here, as the forum has essentially become a wall of moaning, crying** and some relevant knowledge inbetween.
When the people who are running this place took on their leadership role, they started something for the people suffering from this problem. Something they all could join in easily, maybe too easily. But that is where the organizing, combining joint efforts and connection with others with the condition stopped. Since then many members have gone it alone on their own personal crusades, mostly with not much luck. If you look at history it is wrought with examples of small human efforts becoming large ones by organizing and becoming centralized. For years now that has failed to happen here for the vast majority.
Now when things are kept from people they feel disconnected, even more so then we already are as many men here have lost their social, and family lives. People here are desperately in need of validation beyond that which a internet forum has provided. Do you know that many psychiatrists come here look at all of us complaining of our symptoms and think we are all suffering from personal anxieties and body image disorders? A big part of the reason behind this, is simply because the only real information on this condition is on the internet and that is it. Its not in any medical books anywhere and only 2(?) major published articles exist.
It has been stated numerous times about things going on behind the scenes with vague referances to Merck trying to stop us. Well the fact is a bunch of us are suing them and they didn’t manage to stop that now did they? And it took how long before this happened? 10 years people have been suffering? And in less than one year since the first suit was filed more than 50 more have followed.
Back to the leadership role thing. What we have here on this site is a considerable amount of men, many of them willing to go to extreme lengths to help solve their and our problem. Yet this is a under-utilized population many of whom do not know in what way they can really do anything besides going to doctor after doctor spending thousands of dollars along the way. Money which could be put toward more productive things like spreading information through conferances or other gatherings, media events, protests, additional websites, and of course scientific research. Well that is something you are working on correct? Well I don’t know anything about it but people PM me occasionally and ask me if I have heard about anything going on and yes I have heard a few things from some people about the supposed “behind the scenes” activity but generally I keep this to myself not because I think anything of what I heard is sensitive in the least WHICH IT IS NOT. But I do this out of respect for the people who tell me these things in confidence.
But the vast majority of men on this site know very little which is a bad thing. You, me and everyone here can’t afford to limit our efforts by hindering the flow of information from one sufferer to the next. There simply are not enough of us. Maybe we will get scientific validation soon I hope so, because that should be enough to make this thing explode. It should have already happened.
There needs to be a greater effort made in getting us together formally, and more organized. Whether it be through a more offcialized method for becoming a member of this site (so that you can trust the people you are giving information to are not Merck operatives) to organizing a conferance somewhere that many of us could take part in to speak and hopefully get more attention. Now it is understandable that there may be limited people running this effort and that maybe why it is slow but I know that many men including myself would be and are willing to help out in whatever way we can. But instead of finding and promoting ways for us all to get involved in a more proactive way it is repeatily stated that things are going on behind the scenes, this has been going on for sometime now. I know somethings do take time but many of them do not, and not much has been addressed to getting us more organized which will only take a few simple steps.
Many of us are almost being held back, everyday I wake up and THIS PROBLEM (PFS) is the first and foremost thing on my mind. Everyday I try to think, What can I do to try to help solve this today? And ultimately it has come to us organizing our efforts to generate the attention we need from the right people. I try to do this by spreading media attention everywhere I can think of that might help. My real name is all over the damn internet when you google propecia lawsuit, its also in John Peiges articles on the examiner although he got some information wrong on there and I didn’t ask him to put my name in there and hoped he wouldn’t, but I really don’t care as long as it helps us. But I come here and urge people to do things and get told over and over by Mew and others about how things are being handled behind the scenes. Really? Well PM me and tell me how I would really like to know and try to help if I can in anyway, shape or form. Honestly I haven’t seen awhole lot of occur from these behind the scenes efforts apart from Italian study, the BU study and Irwigs study thats it. I one man alone spoke with many scientists about this issue and even contributed in a case study at a University. Interested in what University? PM me I will tell you the school and name of the professor researching finasteride side effects and androgen metabolism. But my efforts and results would have been much greater if I could have had the support and resources available from other people on this site… assests that would be available if we were more organized.
In the end limiting individual involvement is litterally killing our goals here under the guise of secrecy. Well Mew I am not trying to get into dick measuring competition here as we all know that is rather redundant considering our condition, but what is your real life profession? I have a top secret security clearance from the United States Department of Homeland Security, my job title, from the job that this condition has essentially cost me is Special Agent. I have seen more than my share of truly sensitive information, information that if ill supplied would get a person killed or their face cut off by the Gulf Cartel. All these behind the scenes excuses are bullshit, Merck has money power and influence but there will always be scientists interested in the truth and I am sure if they were willing to put forth the appropiate efforts Merck could find out anything about the PFS work that is going on that they want to. Hell Awor said himself the Italian scientists approached Merck themselves.
So if you would be so kind as to enlighten myself and all of us here, what is being done to organize our efforts and what can we do now to help move this thing forward? If you resort back to the usual response I think I will take it upon myself to start another personal crusade to spread information and more aggressively and drastically than before. I was already looking for webpages to start an alternate site, which is how I came upon that item that you and I already discussed.
Or maybe I will just give up and forget about trying to help and be like 90% of the people who come here and end up leaving. Its up to you captain, like it or not you can help move this thing foward faster or it can be stalled and take years and years more before anything is done. Until someone really fed up with things does something mavrick style and it actually leads to something.
Broken Pecker I admire your willingness to help out and you are of course free to do whatever you wish. In fact, if you so choose, I would encourage you to setup additional websites about this problem, continuing to generate media awareness etc as every little bit helps.
It’s unfortunate as you say that many men burn themselves out and simply don’t want to help out but we cannot control the actions of others, we can only control those of our own. I think you are getting really riled up over something which is out of your control, and I would urge you to have patience as we work towards our common goals.
Time permitting, I am doing the best I can on a day to day basis to manage this site for the benefit of us all, and thus far this site has been instrumental in generating much of the action we are now seeing take place in the media, courtroom and in medical community. If you feel frustrated that at the lack of organization, please present some concepts that you think might help. If they are technically feasible for the web admin team, perhaps they could be developed.
Yes, before this site existed there was no central place for sufferers to communicate on the same topic. We have made significant strides in the past 2 years in generating media, medical and legal attention on the issue.
If anything we should be congratulating ourselves, the ball is now rolling and more people are aware of the dangers of Finasteride. PFS is starting to get more mainstream attention which will hopefully translate into further scientific research into the problem.
People are free to organize conferences or other gatherings as they wish, in fact I would encourage it.
However logistically and realistically speaking, such events would cost money for people to attend (flights, hotels, meals. Aside from meeting and discussing issues with other sufferers (which is of in itself a good thing), it would also be great if there were medical professionals involved to share their thoughts on the problem. Unfortunately as with anything, such attendance usually required honorariums or other such donations for the medical professionals, and there would need to be a clear consensus on the purpose of a conference, topics, outcomes etc.
We’re all part of this team. While there are a select few working behind the scenes to move things forward in certain areas for the benefit of all sufferers in the research side, that’s not to downplay anyone else’s contributions thus far or to say we have everything covered, far from it in fact.
I would encourage each and everyone one of us to help financially (save money for research donations), via media awareness, contacting FDA, legal participation and whatever else you can do to get this problem the attention it deserves. So I’m not sure where you are getting upset that I am “telling” you everything is being handled. People should do things of their own accord, just as you have, to draw attention to the issue as much as possible. And thank you for your and others’ contributions thus far to the cause.
But yes, by setting up and paying for this site and investing 1000s of hours into administering it on a daily basis, I and the co-Admins are automatically put forth in certain “leadership roles”, as you put it. However, if I didn’t care to be a part of this fight, I would just close down the site or would not have set it up in the first place. That said, I get the sense you are frustrated at what you feel is a slow pace of news or information; unfortunately I cannot help this as there are certain confidentialities involved with the research that I cannot discuss publicly at this stage, nor do I even have the full picture myself.
Such research efforts are dependent on other factors that do not involve members of this site, and are confidential. I’m sorry I can’t divulge much more at this stage but trust me, when I am able to speak more freely about things, I will. In the meantime I would urge you to have patience, I have no reason to doubt your willingness to contribute and in due course everyone will have that opportunity.
Again, you are getting angry about things which are out of your control (other people on this site). Again, if you have suggestions on how to better organize people, please provide.
I’m not trying to deflect your comments here but aside from research efforts, I would ask you to hang tight. There should be some big news coming in the next month or two that will enable all of us to help move things forward on a faster, larger scale.
Your response was good and more informative than previous ones, I thank you for it. I do have some ideas for the site I will try to develop further over the next few days and PM you about them. As far as the conferences, of course it would not be economically feasable for everyone to attend… and my thoughts exactly in regards to making them part of large medical conferences or symposiums. Particularly men’s health or endocrine related ones.
As far as the rest I do not know what to say other than what I have already said.
