As you guys might know I suffer from facial wasting, facial bone loss (less pronounced jaw cheekbones and chin), muscle wasting and sexual side effects.
I have noticed that a lot of you are wasting time on this forum, discussing vague theories and hoping for natural remedies.
Instead of posting here, and or wasting money on natural supplements we should all be earning money and donating it to the foundation. This site should allow direct donations to the foundation and should keep track of how much each member has donated (the amount should be displayed next to the user name). Focus on donating part of your income MONTHLY to the foundation.
Instead of theorizing on possible remedies, natural supplements and running to doctors to get blood lvls tested, you should think about how you can increase the amount of money you are earning and thus donating.Also participate in the studies.
Any poster (like Chi etc) who claims that he knows the cure is fooling you. All of this obsessive talk of what kind of natural remedies are best is a distraction from the real solution: science.
Yes eat healthy and excercise, but this mental masturbation is really going nowhere. The only solution is a large sum of money spent on solving the problem. Either increase your donations, raise media awarness through protests but dont hope for some miracle natural cure.
To those who have true PFS, and who have suffered the anguish that goes with it, would you be willing to pay back $100 000 to recover your health? I’m betting that most would to regain their normal sexual, physical and mental capabilities and all the happiness (social, sexual, professional) that goes with it.
Instead we can pay even a small fraction of that over an extended period to instigate proper research into this, which will prove the condition exists, see further research snowball and ultimately could cure us. A thousand guys donating $1000 (less than $100 a month over a year) would mean a million raised, and anyone who has substantial assets should be investing more.
No one will help us but ourselves. Merck isn’t going to give us any money for many years, even if the lawsuits are a success, see what they did with Vioxx where they just appealed lawsuit defeats for years on end to avoid paying up. And if we don’t get scientific proof of what happened first it will be even harder to beat them anyway.
I like a lot of what you guys have said, but disagree that donation amounts should be displayed. That will discourage people to make accounts IMO.
I’ve donated $50 to the foundation. I lost my job, have two kids, and am in major debt (mostly because of this condition). I’m currently looking into bankruptcy because I can’t pay my debts. I simply can’t give a lot of money to the foundation. Does that mean I need a cure any less than others? No. I fucking wish I would win the lottery so I could give millions to help!!!
I agree we need scientific help. If time was all it took to get better, we’d have about 500+ more recovery stories saying, “Hey guys, all it took was time!”
Donations are important, but we don’t need to turn people off by comparing what people can and can’t afford.
Also, I think a lot of people are looking for things to ease their suffering. I can understand trying things to help alievate pain or improve other sides.
Lots of us, probably most of us, have been screwed over financially by this. No one would expect you to donate much given your situation so don’t feel bad about that at all.
It does piss me off that we don’t appear to be raising that much given what’s at stake, and I bet many of the DIY theorists are the ones who aren’t helping. I bet over $100k would have been wasted in that Greek prostate doctor shambles of 2011 alone.
I agree that listing donations is a bit silly but do wonder if the forum should become a subscription service of some sort that requires an initial fee. Either way I think there needs to be more encouragement from admin for members to donate.
I believe there are members who have mainly sexual side effects, and their brain functions normally. These members should focus on donating as much as possible. Other members, that have severe brainfog and fatique, should participate in the studies if possible.
If the individual contribution amounts are not displayed a total contribution amount at the top of the website should be. This will motivate people to reach the next funding milestone (100.000, 500.000 and 1 million dollars etc). I believe the financial aspect of finding a cure has to be highlighted by this forum. At the end of the day without funding there wont be a cure. There also should be a direct phone number listed at the top of this site, which shows the number people have to call to participate in studies, if there is a recruitment problem. We have to remember that in 200 years for example a cure will be found. However, the time it takes is correlated to the resources. If we have twice as many resources aimed at the problem the time it takes will diminish.
I believe that the motiviation for young people should be to focus on their skillset and to earn as much money as possible, not to become overnight doctors guessing on what could help them.
One has to temporarily accept the sexual, facial and other changes and move on with personal goals. Achieving success in your area of expertise is now more important than pre PFS. If we have one rich member (and remember there are lots of young PFS sufferes on here), then this might be enough to provide enough funding.
I believe that focusing on PFS is actually the wrong way to go. Its better to implement a healthy lifestyle and then not think about it anymore, direct your energy towards financial success in your field of work.The less you think about PFS the better. The monthly donation should be an automatic bank transfer that increases over time.
I believe this site can be dangerous as depression and negativity will mean that a lot of young people like myself are stuck forever on this site, instead of striving for success that is still possible despite sexual side effects (brain fogged people who lack concentrion are of course another story). Yes this drug might cause permanent depression due to neurotransmitters, however a lot of people might just be depressed because of their situation. We really have to set goals here financially guys.
It might sound primitive, but financial success is now extremly important. Also convince your family to donate a small amount if you can.
I will donate to the PFS foundation when they start releasing information about what they are doing, what money is being spent on what, and what progress is being made, etc. Blindly donating to a cause where I have no idea what is happening and everything going on behind the scenes is being kept in secret is something that I don’t see as the best interest for everyone.
awor made some post on here like last year I think and said they are making huge progress, yet I haven’t seen anything posted on that as of yet and they are waiting for proper scientific journals to be released. Yeah it’s a slow process… I get it. But again, there is nothing being released as to what is being studied, not taking anything from the community based on what they should be studying, instead they are taking a single sided agenda as to what (they think?) is the cause and pumping money into it? I have no idea what they are doing.
Or how they are distributing money? I read a post on here that someone received like $500 or some shit in compensation for participating in the study. What the fuck?? Did that come from the PFS foundation?
Start releasing meaningful info… I will start donating. Until then… I will do what I have to do to fix this on my own. Or release how much money is being placed where.
In no way is trying to find a cure on your own “mental masturbation” because no one else has figured it out… might as well do it on my own… becuase living in this hell is not worth waiting all day for someone else.
They have been injected thousands of dollars from various quarters which have part funded the two so called studies at Brigham and Baylor and we are told to apply yet me and a number of others have been fucking ignored, it’s common knowledge that the suicide victim Dr Daniel Stewart’s family have donated large sums of money to the foundation too
Not good practice, misinformation at its worst
Many men here pin hopes upon the foundation and this needs to be addressed
We get no update from the foundation from they’re website, Facebook or Twitter etc
I am in the process of considering setting up a PFS foundation here in the Uk and if I succeed I will send out a weekly newsletter to all members of the uk forum I may set up
Thus far, it’s simply not good enough to be kept in the dark constantly
Please tell us why we should donate!
What response do we get from donating? What updates do we get and how often from the foundation?
They seem happier publishing suicide stories and negative stories of guys like myself and Ben King than addressing daily PFS business’
Please let me know here if you would support me setting up a Uk and worldwide PFS foundation?
I completely understand Bryce’s frustration. However, keep in mind that the situation we are in is wholly unique in the history of medicine. We have a debased and ruthless drug making (really money making) corporation that has already shown they have ZERO qualms about lying, covering up and making up research. The results of these studies will be used in the courtroom, and therefore must be guarded. The fact the studies have both been started SHOULD be enough evidence that your money is being put to good use.
Since Bryce and others will likely stop funding the Foundation, its imperative on the rest of us to STEP up the amount you can contribute. I was going to fund $300 a month, in light of Bryce’s post I will up that to $400 a month. I understand some of you can’t work, but for those of you that are still employed, we need to increase our donations until Bryce and others can contribute again.
Believing that you can find a cure rather than the professional researchers is unwise. I don’t understand why people think they can outsmart the doctors and researchers at these two major US medical institutions: individuals on their own have an extremely poor track record of getting “cured”. This forum has very few examples of people who have done this, in all the years that it has existed. People have spent thousands on home-cooked ideas, with minimal results. The wise option is to back the PFSF and back the studies which are going on. This is the way out of this mess.
It is unlikely that we stumble on the cause of PFS through self experimentation. Two points, however. Number one: self experimentation is what directed the trial experiments used to decide the ongoing large scale clinical research. Number two: you place far too much faith in these researchers. I have worked in research labs before, and I think you would be rather more concerned for your future well being if you knew how these places worked. It is not some TV CSI lab filled with savants who get answers with 3 mouse clicks. These are, for the most part, normal people working with normal brains that contain moderately more background information than we have on the subject matter.
Finally, I can’t get a job. My brain is a bowl of mooch since I sleep 1-2 hours a night. I would LOVE, LOVE, LOVE to get a job. I cannot even explain how badly I want my brain to function so I could get a job and donate to the foundation. I was just offered (after 4 interviews) an $80,000 + yearly bonus salary as a computer programmer, but the anxiety of accepting it gave me insomnia so bad I didn’t sleep for a week, which turned my brain to gelatin. I FUCKING WANT A JOB SO BAD I CAN’T EXPLAIN IT.
Researching PFS, or symptom management for PFS (in particular, insomnia treatment) is something I do in an attempt to make my life livable before these studies find the actual root of our problems. It is not mental masturbation. ANY improvement in my insomnia and mental function could LEGITIMATELY save my life, as I struggle to continue in this vanilla sky nightmare. I have all of the sexual shit, and the facial changes, and the lack of libido, and the dark veins in my dick, and all of that terrible shit, and I am telling you that insomnia and mental sides are a fucking million times worse. Managing those sides is EXTREMELY IMPORTANT to those of us that have them
But to address your post: self-experimentation informed the studies in the sense that nothing anyone tried worked. When people tried testosterone, this didn’t work. That is what is one of the unusual features of PFS which is eye-catching. But I’m not sure what further self-experimentation can offer at this stage, to the investigation of the problem. And, respectfully, your post hasn’t done anything to address the fact that very few people have had success with these home-based treatments. The overwhelming point remains: the home-brewed methods have had very limited success, despite the money that people on here have chucked at it.
I just believe that the research studies are more likely to deliver treatment possibilities than home-based experiments. That’s all.
Hey, in the end, I deeply hope that you can get relief for your sides. It is great that you were able to get so far with your job interviews, I know how stressful these can be, and it is so fucked up that this drug is wrecking peoples’ lives like this. I hope that in the near future you will be able to get the job you want. We’re all on the same side here and I genuinely want the best for people.
As far as I can see the foundation was only set up in 2012 and they already have managed to get two elite universities started with vital research. You have to remember that the group experiencing side effects like us is a small minority. If PFS would be a common problem the drug would have already been off the market place. So I am not sure if its a wise idea if we divide the limited funds we have.
@pvdl You’re right but I don’t agree to your last sentence regarding how common our problem is … if it is about life or death yes , but when it is about mental and sexual issues I highly doubt even if a big percentage appears to have problems in that area , the fda won’t do a shit and it begins with your local doctor who does not believe you and doesn’t even make report to the fda . I know and you know that it is a more COMMON problem than pharma industries would admit .
I have always been of the opinion (long before I got fucked up by propecia), that the fda is more harmful than helpful. The FDA/ and other government institutions give us a false sense of safety, does a lousy job reviewing medicines and keeps effective medicine of the market. If the FDA/government wouldnt test any medicine, people would take more responsibility and do research for themselves or consult a number of private reviewers, which would be much more competent. Again, had we researched before we swallowed this wouldnt have happened. Its the false safety that goes along with government approved medicine.
So what in your opinion is in the best interest of everyone? Blindly flying to Greece, blindly spending 5 digit sums on stem cells? Blindly doing millions of tests? Blindly buying tons of supplements? Blindly running to every “PFS Doctor” known to mankind? Ranting in this forum? What evidence do you have from the past 15 years of PFS history that these actions have a track record even worth considering?
Considering that the Foundation has been around since barely 2 years, I would say that this is pretty impressive.
So which one of the 100’000 theories generated on this board would you recommend we should start investigating? Should we maybe focus on the prostate or carpet bugs? Consider that PFS is a manifestation of:
That is a pretty damn good track record in my books, better than any patient generated “theories” so far. The current research direction is guided by scientifically validated results from past PFS studies as opposed to wild claims from guys with no relevant scientific background (or infrastructure).
Patients and controls receive compensation for participating. This is the norm for clinical studies and transparently communicated at registration and documented in the study protocol (which was approved by IRB).
We have. Now looking forward to your donation and support of our common cause.
Good luck. Without the information regarding precise molecular level targets, which the Foundation and these studies aim to eventually deliver, you may very well end up “fixing yourself” for a duration longer than you can imagine.
It will take the help of each and every PFS sufferer, as small as this help may be, to make this process as short as possible. Above all, the participation of PFS patients in current and future studies will be key to our success.
this wouldnt have happened. Its the false safety that goes along with government approved medicine.