IMPORTANT RESEARCH POLL -- DO YOU HAVE A BROTHER?

We are in the process of finalizing the design of a major US based molecular level study. The study will require a small penile tissue biopsy (works both for circumcised and non-circumcised subjects). For this purpose, I urgently need all of you to respond to a quick poll.

The question is regarding control groups. We would like to have at least a subset of controls to be brothers of PFS patients. I would like to get a feeling on how realistic this could be (ideally we would have around 15 brothers participating). In other words, how many of you would be prepared to participate together with a brother (as control). Your brother would also be required to give a penile skin biopsy. The purpose of a control is to provide a molecular reference against which the patients are tested, because there is no such thing as “reference ranges” where we are going. The brother has the advantage of high genetic similarity, which will make the interpretation of the data easier and more precise.

You will have to meet at least the following (preliminary) requirements:

  1. have taken finasteride against hair loss
  2. be experiencing persistent sexual dysfunction (and preferably penile anesthesia) for at least 6 months after quitting finasteride.
  3. have no prior diagnosis of sexual dysfunction before finasteride
  4. have no prior diagnosis of psychiatric problems before finasteride (anxiety, panic, depression, psychosis, neurosis, etc.)

The brother must meet following (preliminary) requirements:

  1. should be as aged matched as possible, that means ideally no more than 10 years apart from your age
  2. must be at least 18 years old
  3. must be in good general health and not overweight
  4. must not be experiencing sexual dysfunction
  5. must never have used any substance which reduces androgens at the cellular level including finasteride, dutasteride, saw palmetto extract, isotretinoin, antidepressants, GnRH agonists/antagonists, statins and other forms of anti-androgens
  6. must not be using steroids

If only one meets the criteria but not the other, the one who meets the criteria can also participate alone.

I cannot share any further information about the study at this point, neither in this post nor via pm. All I can tell you now is that the study will be of highest significance and will provide us with data which will hopefully help us in assessing potential therapeutic molecular level targets.

If you would be willing to participate in the study, please respond either directly in this thread or via pm.

Thanks.

To all trolls and doubters: I will delete any posts at my own discretion which I consider to be derailing this thread. This study will be done at a world class institution by leading scientists and is an incredible chance for all of us. A huge amount of work went into getting this far. I am not in the least interested in your unqualified opinion as to why you may believe that this experiment is not relevant. We have clear evidence from the previous penile tissue experiment that what we found is relevant to PFS in general, otherwise we would not be doing this. If you feel that we are not doing the right thing, then don’t participate. Period. Go get whatever checked that you feel needs to be checked on your own and don’t post in this thread.

Are half brothers – maternal or paternal – allowed?

Are we allowed to know the location of the study before we commit?

Half brothers is ok too, still “better” than not related at all.
Sorry, can’t disclose location at this point besides that it is US based (major US city, well connected to airport). You are not committing yet, this is just a poll so I can get a feeling if the objective is realistic or not. Of course, please only respond if you are serious about participating.

Awor,

Shoot! I do not have a brother. If I can afford to make the trip, I feel I owe it to the community in general to participate. I will help in any way I can. This is GREAT news!!! Thank you so much for the update.

great work. Awor pfsfoundation.orgp is also taking part in this research or they are doing their own separate research? I am asking this because you started your work much earlier than Pfsfoundation.

Awor, it may be a good idea to re post your info/ poll in a brand new thread because i think it will catch more eyes

It will be a PFS Foundation study.

I have a brother and would consider participating, obvioulsy with more information, including what the study entails, who is directing the study, what the ultimate goal is, how do they believe that this study encompases the vast array of side effects assocated with PFS, and ultitmatley based on the existing theory why do they believe this is “persistent” for some men (1-2 years) versus years and years with no upswings or improvemets.

oh, and how does neurosteroids and the possible deprivation affect the overal picture of our syndrome.

I have two brothers who have not used finasteride.

Both brothers took Accutane. We’re out.

studies to complete missing???

Shouldn’t this be a headline on the main webpage to make sure all see this post so we can make sure we get the 15 pairs needed as soon as possible??? BTW AWOR you are the man for making this happen!!!

dumb question … would a cousin do?

it will be awkward as hell asking one of my cousins to get their dick cut, but under the circumstances, IF a cousin could work, i bet they would do it under the circumstances

haha one more thing, does anyone ever understand what the hell deluxxxxxx is saying?

I could be mistaken, but I’ve been told that delux uses google translate to translate his thoughts. Most of the time I can understand what he’s trying to say, other times it’s more difficult.

that is the fault of Google Translator. ajajaja

Thank fuk some guys are doing something about this mess we are in, I prayed there would be,only found this pfs web site over xmas you could say ive been sufferin since 1998 but i came of that rat poison xmas 2010.

Yes I have a brother whether he would do it is a completly diff question but if you cant get 15 pairs ill ask him. anything to find a resilution to our misery… and anything to help. Thank you good man!!

Awor, I honestly think you should re post your poll in a brand new thread so people will see that you are the author. It might catch their eye a bit more quickly, and this is obviously VERY important.