This thread will keep track of study participation. Anybody who plans on going, wants to call out somebody who should go or has gone to a study, can post in this thread. If you want to discuss current homebrew versus science trends in this community, you can post here also. Same goes for any ideas about how to increase study participation, so that studies are filled much more quickly.
[Size=4]1) Reason for lack of participation: [/size]
A lot of members of this forum, refuse to participate in studies. This is proven by the fact, that Baylor is still looking for participants, despite launching their study in October 2013. The reasons for the lack of participation are:
a) Overinvestment in homebrew.
This is what I call the homebrew insanity carousel. It starts off with one person recovering. If he is sane, he says that he doesnt know why he recovered and leaves it at that. But many people are not sane. Instead they draw a CAUSAL! relationship between their actions during recovery and their recovery process. Meaning: If they ate aspargus, they believe aspargus cured them. If they worked out, they order that everyone should hit the gym. If they swallowed XYZ pill, they order everyone to swallow XYZ pill. This call to homebrew, is immediatley answered by desperate, PFS stricken patients. They run out and buy the protocols ingredients. Then they start asking the thread starter thousands of questions: When should I swallow the pills? How should I work out? What amount of aspargus should I eat? What where your signs of recovery? Their normal symptom fluctuations are suddenly all casually linked to the protocol of their Messiah. Meaning: Today I was feeling a bit horny BECAUSE I ate aspargus. 1000s of dollars are wasted and hours of time spend on these Messiah threads. Eventually people realize, that nobody except the thread starter is recovering. Instead of drawing the right conclusions they jump on the next insanity carousel. It escapes them, that time is the common element of recoveries and that the rest is conjecture.
The problem with this is, that the posters put all their eggs in the Messiah protocol basket. They dont participate in studies, and they are not donating as much as they should.
Basically, they would rather invest their time and resources in the theory of an anonoumous homebrewer, than in scientific research at top institutions, that will uncover the biological mechanisms of their condition.
Over a decade has past since this insanity carousel and homebrew bullshit started. The results are anything but impressive: No treamtent and no explanation of what might have caused PFS.
b) In Denial
This leads me to the next reason, why people do not want to participate in studies: They are hoping for the quick fix. Study participation would mean that they at least partially ackknowledge, that this problem is to complex too be patient solveable. It would also mean that they recognize, that a cure or remedy might take time and is out of their immediate control. Thus many homebrewers are in denial mode. They will quickly fix themselves for the next decade as they have done for the last decade.
c) Lazyness & false assumptions
The last one, is that many are just to lazy to participate. They make excuses for their lazyness, like that they are physical incapable of participating. They also hold the believe, that somebody else will do it anyway. Their lazyness thus has no negative effect. The reality is, that these studies are taking ages to fill.
I want to call all of you to arms. Lets get science involved! Lets ALLOW! researchers to do their work, by participating. Passive behaviour is not enough. If you dont participate, scientists cant do their work, as YOU! are their research subjects.
The basic question is the following: Would you rather invest your time, trust and resources in a homebrewer, or a harvard researcher?
Up till now, the clear answer has been: Homebrew. Studies are not completed because people are to busy praying at the altar of the latest Messiah.
[Size=4]2) What is the research trying to accomplish?[/size]
"Determining the underlying biologic mechanisms of post-finasteride syndrome requires further clinical and basic science research.
Through such research, we aim to uncover the underlying biologic mechanisms of PFS while broadening media, medical and scientific awareness of the syndrome to better enable:
-Identification of novel PFS risk factors (genetic predispositions or otherwise) in a subset of the population
-Identification of novel underlying biologic mechanisms for the syndrome and why it persists even after quitting the drug
-Development of effective treatments for PFS patients worldwide
Current research is focused on determining underlying biologic mechanisms for the syndrome at a molecular level, as will future initiatives. Specifically:
-Genetic risk factors for PFS
-Androgen receptor expression in PFS patients
-Hormonal profiles of PFS patients
-Full genome gene expression profiles and pathway analysis in PFS patients
-Proteins encoded by androgen responsive genes (ARGs)
-Neurosteroid levels in PFS patients
-Epigenetic chromatin alterations in PFS patients"
[Size=4]3) How to particpate: [/size]
If you want to participate in a study contact Phillip Roberts at media@pfsfoundation.org. If you cant afford to travel to the study site, the foundation can help you out. Often contacting Phillip Roberts will hasten the process; direct contact with the university conducting the study will often consume more time.
If you still want to follow a particular quick fix, or homebrew method, do so, but at least simultaneously participate in studies. Only then can you go to sleep with the knowledge that you are attacking the problem from every angle.
Anybody who wants to commit to participate in a study, but needs somebody to kick his lazy butt if he doesnt follow through, can announce their participation here.
[Size=4]This thread will be a measure of the health and productivity of this community. If there are no posts in this thread documenting participation in a study, you can be certain that this forum is highly irrational and miles away from a cure. [/size]
