I try to be as positive on these forums as possible, but I am disconcerted with the foundation right now. Two major studies were announced nine months ago, and we still haven’t heard a word. I don’t expect anything to be conclusive at this point, but why have we heard absolutely nothing? Something interesting, a recruiter contacted me in fall of 2013 to take part in the study, and I was all on board. After submitting to a couple of interviews, they disqualified me because I took anti-depressants for ONE MONTH when I was 22. This was over 3 years prior to PFS. That same gentleman e-mailed me a couple of weeks ago, asking why I wasn’t taking part.
ARE WE STILL IN THE RECRUITMENT PHASE!!??
If we are, perhaps we need to assess the eligibility criteria. There are thousands of sufferers - surely you can find enough to take part in your study. Also, if the foundation is having trouble finding eligible men - WHY AREN’T THEY ACTIVELY TELLING US THIS AND MAKING MORE OF AN EFFORT TO RECRUIT!?
Furthermore, I think the foundation needs to keep us updated on progress. We have heard literally NOTHING in nine months. Let us keep in mind… we funded both the studies and the entire foundation!!
My guess is a low participation rate plus the exclusion of ‘non-qualifiers’ is the reason it’s taking so long.
By the way, the founder has put in hundreds of thousands of his own money so it’s not just donations supporting them.
He lost his son to suicide, so I’m sure he shares the same concerns we have over the dangers of Finasteride.
I share the same frustration with progress. But my frustrations are aimed at Merck, the FDA, and the Legal system for knowing about this for so many years and the product is still on the market and not a single case has been tried in court yet.
Since the foundation is trying to establish a ‘causal link’ as well as identify some sort of ‘treatment plan’, I think the wealth of information found on propeciahelp.com could easily be compiled into a multi-faceted treatment protocol.
The effects of Fin is so far reaching into our bodies that I doubt there will EVER be any sort of medication developed to unwind the damage. It’s such a complex situation with neurosteroids and hormones, and each person may have varying degrees of damage.
As for me, I’m recovering thanks to the guys who came back to post their recovery protocols. But I didn’t start improving until I got off my arse and got serious about it.
ıf ı am stıll here that because of studıes but ı dont understand eıther WHY DONT THEY EXPLAIN US CLEARLY ıf they stıll need people?
Im one of the worse case on forum, ım so happy the a foundatıon exıst and wants to help us. But ım really losıng my belıef.
A foundatıon member must sıng ın as a forum member and must talk us dırectly IMO.
That ıs a huge problem, why foundatıon dont contact us dırectly?
Propably mew wıll be angry me when he wıll read thıs but my purpose ıs not blackened foundatıon, ı just need to hear some posıtıve thıngs. Im not capable to donate for now but ı wıll donate when ı earn some money.
I hope they wıll fınd somethıng, ı hope they wıll develop a medıcatıon, ı hope they wıll show all the world thıs fuckıng pılls are poıson, But am ı so sılly because actıng optımıstıc lıke thıs?
i have donated monthly to the foundation from the very start and will continue to do so,but it would be nice to hear something about how the studies are going,no one seems to know anything atall,have they got enough people to test or not???,we cant seem to get one snippit of information one way or the other,if they were short of people surely mew and co would be on here trying to recruit more people???,maybe everything is going smoothly and they’re holding there cards close to their chests eh???..
In that post Awor asks for people to contact him if they experience problems with the recruitment process. It seems that a recruiter had initially excluded you but then later re-contacted you, asking why you haven’t attended. This could have just been a mistake on their part, or maybe some wires were crossed along the lines.
Either way - it seems that you experienced a problem - so it’d be best for you to let the relevant people know. So, you could message Awor and let him know about the situation.
I did. They all agree that I am ineligible. I am not insisting on participating. I’m insisting that the foundation stop disqualifying obviously qualified people.
I met a guy and he said harvard study will publish 5 months later and i ask them how do you know. If he isnt lying he said wait and see im really sure… its just can be a lie but i would like to share. Same guy claimed dr. Daniel had his genome map and he said he has mutation. Again, i dont know who is he and if he is lying…
Edit : its just a speculation from a normal guy but why do a guy say lie about serious condition?..
I gather that the Foundation is doing a huge amount to support these studies, and I’m incredibly grateful for all their work. All donations to the Foundation make a real difference, so please do give as much as you can to support them.
I think we are going to be a much, much better position next year once these studies have been completed - enabling the search for treatments/cures.
The biggest problem here is a completely wrong level of expectation of many PFS sufferers, in particular regarding scientific studies.
I have said a few times, and also not too long ago, that the studies are still recruiting and need patients, this is all the information that we can provide. Scientific studies do not usually provide updates until they publish. So please drop your expectation that you will get regular updates, this is not going to happen. If you want to see results, then everyone participate and help us complete these studies.
One of the main problems around here is that many seem to believe that it is the “others” who will take care of whatever needs to be done. The others will donate and the others will participate. I am disappointed at how few people have bothered to donate even a small sum to the Foundation. Having said this, many thanks to the ones who did. On the other hand, people seem to have no problem in coughing up tens of thousands of dollars for trips to Greece, gazillion assays, stem cell therapies and whatever other “save your own buns” therapy people come up with. After 10 years+ of collective PFS experience, there still seems to be a overwhelmingly naive expectation that this highly complex problem is doctor or even patient solvable, armed with not much more than Google, a ton of simple commercial assays and “common sense”. I am stumped by the self-confidence certain individuals around here seem to have, thinking that they have (finally) understood this problem just because they have good grades in school and consider themselves to have good spatial understanding skills (I seriously had a guy pm me this). Theses guys and their nonsense theories are an important reason why not more people are participating in basic science research (never mind even helping to fund it). After all, those top notch scientists from two of the world’s leading medical research institutions don’t have a clue what they are doing, they should rather be looking at X, Y or Z, so the stance of our community enlightened ones. Many desperate young guys around here don’t know who to listen to any longer and the idea of a quick Internet supplied snake oil fix appears more attractive than participating in a study with uncertain outcome.
Meanwhile, a small group of individuals have invested a significant six digit figure into funding currently 2 major molecular level studies at Baylor and WBH. Again, the same “others will take care of it” crowd doesn’t see the necessity to participate in these studies that they didn’t even have to finance. It probably makes more sense to them to just rant around in this forum and jump on the next snake oil therapy band wagon that some barely-out-of-high-school “genius” came up with.
To the guys I am talking about here, and you know who you are: You need a very serious change in attitude. The 10 year+ proven fact is, that there currently is no general solution to this problem and there won’t be until we understand it better from a biological perspective. The quicker you will accept this, the better for your future. Get your act together and start applying to both Baylor and WBH. If anyone is experiencing recruitment problems with either studies, please let us know via pfsfoundation.org/contact/. If you are facing cost issues with the Baylor study, and this is keeping you from participating, let us know as well, maybe we can help.
Gentlemen, the ball is in your camp. It is up to ALL of you to make this happen. Neither snake oil nor posts in this forum or theories are going to cure you. Science is not promising a cure either. But no matter what, we desperately need a much better biological understanding of this problem in order to even start thinking about what can be done to solve it. Without this understanding and your support, it is highly likely that most PFS sufferers will be faced with this problem for a very, very long time. The choice is yours.
Awor, thank you for your kind update. I for one am not in the list of members you mentioned
I am eternally grateful for all the work that the foundation is currently doing thus far and despite living in the uk, I have applied to participate in both studies this last week and currently awaiting a response from Brigham and Baylor
People need to have a bit more patience too and I’ve said many times that members need to get involved more, not only in these studies but on podcasts and with other general awareness schemes and opportunities
maybe im the last guy to asking you because i dont have financial freedom so i dont partipicate or donate for now. Awor is right, there is currently no cure. So please guys , please help these studies.
I’m currently speaking to four men who claim to be at various stages of recovery from PFS. One is at almost 100%, another around 70-80%. In addition, if there is no solution to the problem, why is there a “Recoveries” section on this forum?
I’m not trying to argue by the way, I’m genuinely confused.
I think you misunderstood me. I am not saying that no one has recovered. My point is, that there is no general solution to this atm. I think this is pretty obvious, or we wouldn’t all be sitting here. Just look at what is going on in this place. Yes, people do recover - fortunately. Some believe that their body just healed with time, while others believe that XYZ therapy did it to them. The ones that believe that their XYZ cocktail got them out of this mess will start their “I found THE solution” thread.
Next, everybody will then jump onto their recovery band wagon and try to reproduce the success, which never materializes for any real number of therapy followers. The recovered guy will then typically try to cook up some theory as to why his therapy is working and what others need to do to make it work. People then start getting all worked up and everybody runs out to buy whatever the therapy calls for - supplements, stem cells, trips to foreign places, tons of assays, you name it. Then, eventually, after hundreds of posts, thousands of dollars down the drain, reality starts to set in as people start realizing that no one is really recovering except the original guy that started the thread. This recovery carousel has been going around many times in the past decade, is going nowhere, but people nevertheless eagerly keep jumping on it.
As much as I can understand that people desperately want to believe that they just need to take the right combination of supplements, in the right dosage (best carefully tuned with a ton of assays) to get out of this mess - it is exactly this hope that is leading many down the wrong path. By wrong path I mean that people are repeating the same nonsensical approach over and over and expecting a different result. Albert Einstein once defined this kind of behavior as insanity.
Again, don’t get me wrong. I am not against people trying things and trying to recover, of course not. Where I do have a serious problem is when everybody is sitting on the damn insanity carousel while we are trying to recruit a fricking 25 guys for a massively expensive molecular level study, which is broadly looking at why our cells are not doing what they are supposed to any longer. This kind of information would be vitally important to allow us to really start targeting and tuning those therapy cocktails. This kind of information would allow us to become infinitely more effective. But it is not happening (fast enough) in large part because everybody is so busy following the recovery cook books and pseudo-science of i numerous recovery Messiahs on this site.
In short, people are putting all their eggs in a basket with a very poor track record. The Foundation put a lot of effort into creating additional options for us to pursue, which are not getting the support from this community that they deserve. Because of this, the community is not getting back the information that it would need to start developing more effective therapies, that work not only for one but for many. In other words, we are wasting precious time.
I hate to belabor the point, Awor, and I agree with what you have posted - but I would gladly fly out tomorrow and be subjected to any number of rigorous tests should the foundation not deem me ineligible due to the fact that I took a mild anti-depressant for a month, three years prior to PFS. I am sure there are not enough willing participants, but the foundation is also at fault for disqualifying those of us who shouldn’t be. I am a classic PFS case, with nearly every symptom, who has been suffering for 2 1/2 years, yet because I took anti-depressants for a month SIX years ago, the founation isn’t interested. They then cannot complain that they don’t have enough recruits. Sorry.
In your case, you tried. But there are hundreds hanging around this place that haven’t. My complaint is to those.
As for exclusion criteria: There are various interest groups out there that will try to rip those studies to shreds once they get published. We don’t want that, for reasons I think you can understand. The scientists have designed the studies in a way as to provide as close to zero attack surface as possible. Antidepressants unfortunately are a confounding factor, as they are also known to cause something similar to PFS called PSSD. Once the study gets published, no one will pay attention to your particular story. The nay sayers will just take the fact that it didn’t exclude antidepressants to throw a smoke bomb in the show.
That is the way things work and I hope you can understand this.
