What worries me is that it could take years if not decades to fully understand PFS.
i know the prospect of this is scary, but it is what it is … all we can do is try our best and be proactive man … it is a good thing my friend, we have to stay organized and keep the momentum rolling
When do the US studies begin? I thought they were scheduled to begin before the end of the year. Shouldn’t they be recruiting people by now if they want to start by then?
i think only the foundation knows the answers to those questions
What is the difference between the U.S. study an the european? Who is doing it?
19, I fully agree that the research is extremely important in order to better understand and possibly solve our problem. The best chances of finding a cure is through the research being conducted. However, I don’t understand why we are kept so much in the dark about it. I think many people are frustrated for this reason. We are not given updates (I think last one was last summer) nor told what the data is showing beyond vague statements, such as “there is a problem at the AR receptor level” and “there is a problem with neurosteroids”. If the studies are ready to be published, why can’t we learn more? Also, doctors read this site and are probably looking for ideas or possible treatments. I believe the more information available and the more brains working on it the better. I am sure there are some outstanding endocrinologists and neuroendocrinologists seeing patients that are not involved in the study, shouldn’t they be able to learn more information about what is going on?
I’ll answer 19’s rehtorical question. Absolutely without question the guys will continue to believe they know more than the institutions engaged in scientific research and in astounding numbers. Personally I have given up on 95% of the guys on this board and spending time trying to explain things to people without the ability to understand is a waste of effort. For some of the guys I can chalk it up to age or diminished capacity from Fin use but that doesn’t account for everyone. Degreen’s, esermon’s and Mark2012’s comments are a prime examples.
It has been explained over and over again ad nauseam why there has to be confidentiality over what is going on with the research even though the reasons should seem completely obvious to any reasonable and thoughtful person. Yes, scientific research takes time but is that a reason not to pursue the only avenue we have out of this mess? And how do you know if a treatment is two or twenty years away? Of course the PFS foundation isn’t in the business of dispensing medical advice. They are organizing the research, not performing it. They are attempting to raise funds, acting as a liaison between multiple institutions, and so on.
Further, let’s be clear about another thing. Spending $10K-$15K on “treatments” with no real scientific backing while the actual research dollars from this board continue to be zero doesn’t make you a “hero”. It makes you a victim all over again. I think everyone understands that not everyone will be able to donate at the same levels but I’m pretty sure those donating at a substantial level would appreciate a nominal contribution instead of just being expected to produce the monies to fund these programs. As a community we’ve wasted hundreds of thousands of dollars just within the last few years. Without question were that money put into research we’d be light years ahead of where we are now and potentially may have even discovered effective treatments.
This commuinty needs a wake up call. You have a guaranteed return on investment by donating to the PFS foundation and you have a ten year record of failure in attempting to self treat this condition. The choice seems pretty clear.
This really doesnt fit with what i have seen on the forum.
i have to agree with your line of thinking, completely
19 and Boston, thanks for your excellent and to the point posts.
I am dismayed at the consumer mentality of some on this board. Many are expecting results from research while having contributed nothing to support it. The burden of financing these studies and investments in time are currently being carried by a very small number of individuals, with exactly ZERO coming from the “big mouthes” around this place. Some people are just bitching around and making demands. As Kennedy once said: Don’t ask what the Foundation can do for you, ask what you can do for the Foundation. If all you are going to do is bitch and make demands, don’t expect anything in return.
I have said over and over again, PFS is complex beyond what most people on this board are able to understand. If you believe that you have figured this out, you have NOT understood the problem. I am not saying that anyone is stupid, but it’s like believing that you can solve HIV with Google. Also, you are missing vital information. Forget it, once and for all. Solving this problem is going to require more massive, multidisciplinary research. Lastly, stop confusing trolls with scientists. Past propeciahelp.com history has proven over and over again, that the most vocal guys on this board are usually the ones with the smallest comprehension skills. Just because everyone is looking for an easy to understand, Google digestible answer to this problem, does not mean that OUR problem actually falls into that category.
The current research is on an excellent path. The basic problem is pretty clear, and there is no need for anyone in this place or elsewhere to continue theorizing on what is going on. Doing so is a completely senseless waste of time. The REAL challenge now is to determine the drivers at a gene expression level, to find out how we can influence the problem. That will be the first step towards finding a therapy. This will require at least six digit funding. I promise you that these funds will not only come from the pockets of the ones who have donated so far.
The guys on this board have a choice now: You can continue to believe in Google and quackery to solve your problems, while spending thousands of $$ for nonsense therapies, tests and various “specialists”. If you go down this path, you can be sure that we will not progress in finding effective therapies or even a cure.
Alternatively, you can invest into the only organization on this planet which is 100% focused on finding a cure for YOUR disease, even though you currently don’t know what they are doing. Even if you did, you have to accept that you probably wouldn’t understand it - because its COMPLICATED! I further guarantee you that the research coming out of this is going to mark a milestone in medical history, it is that significant, novel and complex (i.e. no answers to be found in Google). Print this out, and dig it out again in 5-10 years. You will then hopefully see.
It’s your choice and it’s in your hands. At the end of the day, it’s your life. You are not going to get a second chance at this.
Awor
amen awor
Well its been already 10 years for me.
I had 2 years of no sex just after fin
2 years of 50% functioning with exercise and the healthiest life style ever
2.5 years of overall body knock out
and the remaining years where ups and downs but in general crap because new metabolic problems and prostatitis kicked in as well ( and even using herbs/sexual stimulants or drugs to perform sexually is not what one should consider healthy but at least it was something better than nothing)
i guess i will be donating too
theres nothing else to be done or wait on
just curious though why the 3-adiol-g parameter was left out of researching. or wasn’t it?
exactly for most of us it is the fsh that has been really affected
lh is almost never a stable value it goes up and down too much during tests but fsh tends to remain stable and low
who cares its just another research though pinpointing how complicated our problem is
Is it possible that people are donating in installments rather than lump sums, thus distorting the picture somewhat as to how much is being raised? Might we not have a better idea after a few months?
Great posts guys. Let’s keep building awareness about this to every member both old and new, as forum participation is not always great and I bet there are hundreds of previous posters (and even some current ones) who don’t even know the Foundation exists. Maybe if a member or even a mod informed new members about it in their profile story it would help. Or PMing people to let them know too.
No.
Once the Foundation is officially a NPO, then the “big boys” will be able to contribute.
@awor, thanks and good luck in February
Here’s a question do ssri/accutane/SP suffers fall in the same category as PFS suffers? Then maybe we should also try to reach out to them as well ifspent this isget the case/highpothis, as it seems that SSRI suffers surmount ours number wise. Another question is if this is an epic scientific find, can’t this get some kind of government grant especially since we could benifit from cancer research, this would lead me to believe that maybe cancer research will benefit from us??? All said I really hope we don’t let this opportunity surpass us, and please close the theory thread it just sets us back. Thanks to everyone who donates even a little bit adds up.
yes i am an accutane sufferer and i will be donating
Since the scientists found low allopregnanolone, have they suggested supplementing that? Allopregnanolone has been shown to stop and even reverse MS symptoms. I’m not saying we have MS, nor am I saying allopregnanolone is a cure. But, wouldn’t supplementing it greatly help some of us until a better treatment or cure was found?
Bump.
Please consider linking close family members, friends, or anyone you feel comfortable with knowing of your problem (our problem) to the PFS Foundation website. I know this condition of ours is difficult to explain to others, in a number of ways, but if you can find the comfort in doing so, please do. The more awareness you spread and the more sympathy you can find, the more money we see towards this cause. I’m not asking anyone to expose themselves if they are too embarrassed, but weigh the potential risks with potential rewards. Thanks.
It might help knowing what is approximately the range of money needed for the funding of those reasearches. This can help pfs sufferers in weighing donations.