2012 Scientific Research Initiatives into the Post-Finasteride Syndrome - DISCUSSION THREAD

Science PFS Research
#221

Guys, we do not have access to the Foundation’s bank account or funds. As has been mentioned in past posts, once the Foundation attains NPO status you should be able to see the status of current funding efforts via annual reports. Therefore this is not possible at this stage.

There are no plans to charge membership fees to PH.com, this site is essentially a non-profit in of its own accord as the Admins cover the costs for web hosting etc for the benefit of all sufferers. I understand the concept of charging funds for membership which could then be donated to the Foundation, however as others have mentioned, membership fees for a self-help group would drastically impact membership and give the wrong message that this is a a for-profit business, which it is not whatsoever.

notcrashedyet – you make some valid points and I would encourage you to email the Foundation directly with your suggestions.

The best thing we can all continue to do is donate directly to the Foundation, whatever/whenever we can, as much as possible.

Cheers

#222

Why not add some sort of symbol to a members profile so it is clear by their posts if they have donated. They do a similar thing on Dr Crisler’s forum.

Of course this would depend on being able to send your user name with your donation (which I think is possible to set up?) - and that info being relayed over to the admins here.

#223

great idea

#224

Please, no, ever. Donating should be voluntary. Users shouldn’t be persecuted if they choose not to donate. The board would just descend into a shitstorm of cat-fights, which there is enough of already. People will continue to make important discoveries and explore other avenues not covered by the research initiatives. I want to hear what these people have to say, rather than have them chased off the board for not donating $100. The focus has to be on raising targeted amounts, not on who and who isn’t donating.

We’re better off putting together a list of persuasive arguments in relation to the research. The positive aspects that may come about from such research initiatives. Such as…

  • raise awareness through published scientific papers
  • kick start further scientific research, funded by someone else
  • published papers would help our interactions with the medical community in our own countries
  • something might be discovered that can be used in our legal action against Merck eg: that shows causation
  • possible removal of drug from market or further updating/disclosure of possible side effects by regulatory bodies and Merck
  • the feel good factor of contributing to a joint community effort that could provide redress for everyone
  • possible elucidation of PFS mechanism
  • possible cure

That’s eight to start with, can’t think of anymore.

#225

Fuck anyone that doesnt want to donate.

‘notcrashedyet’. Ive already noted you are a time-waster/hypochondriac with posts like this: viewtopic.php?f=5&t=5594#p44293 amongst many others (not to mention your username).

My idea wont weed out all the wierdos/morons like you, but at least you’ll have to pay for the privilege.

#226

^This. This right here. Just pushed me from not feeling financially able to donate to going ahead and doing it anyway. Not Oscar or anyone who believes in guilting people into supporting a cause they most certainly want to but just financially can not.

I was actually pretty content with how we were doing as a group as of late but this little outburst:

made me sick. I know it’s most likely a long way off but once we find our cure, I’ll be happy to never again have to hear the bickering from morons like Oscar.

#227

Oscar is correct, we all had no fucking problem taking this drug for $80 a month, now that we want to raise funding to investigate these horrific side effects people stick there heads in the sand and act like a modest baseline donation of $100 is the end if the world. Get your priorities straight people. I guarantee those not willing to donate are the same people posting about bullshit candida and other wild theories.

#228

It’s nice to see people finally taking the initiative to speak up against the idiotic nonsense around here from the ilk of domino and notcrashedyet (whatever his name means). In this instance Oscar is far from the “moron”. He’s spot on.

Domino, what’s this “we” find a cure business? What are you doing to support the foundation/research? I think you meant “they”.

Notcrahedyet, constantly seeing a 20-odd list of itemized demands from you in every post makes me want to reach through my monitor and shake you by the lapels. You just don’t get it. Spare us the pain of your “list of persuasive arguments” that is of no use and no one is going to read. You have zero grounds to be making any demands or requests. Quite the opposite, you should be asking what you can do to help support the foundation. Either line up to support the research or get comfortable with the idea of a lifetime of Fin sides.

It had been bantered around at one point to change some of the requirements of membership here. Maybe that should be revisisted. Those unwilling to donate or support research are of little use to this community.

#229

Not that I think any of us should Have to have done something around here to have a position but you asked so here goes…

My contributions: I reported to several doctors my persistent side effects, reported to the FDA the severity of my adverse side effects, I told my story to the examiner and allowed my picture to be posted in that article and on this site, I Just donated to the foundation, I’ve tried several treatments myself with some under the direct guidance of a doctor (go ahead and critique this one but part of science is based on experimentation; therefore it shouldn’t be judged so harshly), I follow the propecia foundation on twitter, I have offered to help in other ways possible, and am informing more friends and acquaintances about the horrors of Propecia on a daily basis.

Granted that wasn’t all done in direct support of research but any little bit helps. My main point was that donating shoud be voluntary…that’s all I was saying. Notice how I’ve never made any demands around here. So, you questioning my motives/integrity is completely appalling. And all I meant by “we” is humanity…not us in specific, nor doctors, nor researchers. So boston, with all do respect, fuck off and pick a more deserving target for your derision.

#230

Oscar and Boston- such venom, where do i start? I’ve never encountered this level of antagonism before in my life. It beggars belief that i would get this on a board with the level of suffering that goes on here - i would have expected support??? I’m fighting the temptation to hit back at you with some wild low level insults but i’ll try and keep it as thinly veiled as possible, for the sake of professionalism, forum rules, respect for my fellow sufferer etc etc. The worse thing about it is i feel i need to take time out of life to reply to your personal attacks. For the record, I’ve read a significant amount of both your input on this board, and i respected it and (dare i say it) i was glad to have you on board, if not for your predicament.

Oscar - i know you’ve made your feelings towards me well known in the past, which i’m still shocked at - even though you’ve never met me and i’ve never set out to attack you in anyway. For that reason i’m not concerned about your comments that seem aimed at me as a person, i could’t really care less as i’m not on the board to make friends. I do take umbrage at the way you seem to be questioning my condition or the way i’ve handled my condition - i’m not sure which one it is? I want people to take me seriously as i feel i can make a good contribution to the PFS cause going forward - like i feel i have done in the past with my experience with tamoxifen (which you kindly highlighted for everyone). Hopefully ‘normal’ people will disregard your comments as random drivel, i’m not going to explain myself over and over to you or anyone. My username isn’t helpful i agree, but if you read the unfortunate way i crashed, you’ll understand how i found this board before i crashed.

Some questions - why would you even want to enter into the territory of who and who didn’t have a crash - what possible benefit could this bring? Why would you want to even create distrust between users? Even if there are fakers or hypochondriacs on the board, why are you wasting your time trawling there posts and trying to shoot them down at every opportunity? Don’t you want there financial contribution to the research - since you feel pretty ‘fucking’ strong about that? Why risk being wrong about someone’s condition, when they could make an important discovery that helps everyone - surely you realise you have a good chance of being wrong about them, as ultimately you know very little about them or their condition?I despaired when i read your suggestion that you wanted to label people as ‘donator’ or ‘non-donator’. I pray to heaven this doesn’t gain support here, it would turn into a pretty scary place if it does. What happens if they don’t conform?

Boston - I can’t understand such hatred to me or my suggestion. Again, you seem to want to resort to some pretty low level insults, i definitely had too much respect for you before. Your now on Oscar’s level well done. I’m putting it down to your alleged absenteeism from the Alpha Male Group you claim you used to belong to - i seemed to remember a comment from yourself to that affect, ‘the more Alpha we are, the harder we fall’ you should write a song about that one. I used to belong to that one as well, you definitely definitely weren’t in it though. Granted my ‘essays’ are a bit over the top sometimes. But i’m not demanding anything merely pointing out sensible options for the forum to explore regarding funding the research going forward. You are going off on some mad tandem.

For you - would you prefer to leave these things as they are and do nothing or try and force people to donate by insulting them? What don’t i get - that donations are poor? Yes, that was the whole point in me suggesting another route. Boston, i’m seriously questioning your sanity here. This is all over the small matter a of few emails that would get sent out to try and kick start funding and build up momentum with it? Isn’t it even worth a try, are you having a mental block? Why would people not read 8 short statements (or more) about what the research could achieve? Are you 100% sure everyone understands the clout published research brings to the table, what doors that could open up on all fronts? Or should they donate it because Boston the great 21st century dictator says so? Tell me what grounds i need to make requests Boston, i never realised what a tight ship you were running here? I never realized Propeciahelp had become so authoritarian? Are you growing a small pruned moustache? And again i despair at any suggestion to ban people from the site, and if the research comes up with nothing, you have just cut out people that could be coming up with vital discoveries because they choose to try things themselves on their own, but won’t tell the board because boston kicked them off the board for having ‘little value’. You don’t know what medical trials people are going to try, what people may bring to the table in the media, legal and scientific frontline? You are a fool for suggesting this, its embarrassing. See Domino’s post for a perfect example of this who sums it up quite beautifully. And if people say they don’t have the money you should just leave it. It might not be $100 it be a $1000 in the end or more after all the research is completed, when are you going to draw the line?

#231

So getting away from the personal attacks. I made suggestions and put my point forward, as a way of addressing the reported lack of donation’s to Awor’s research initiatives. I hoped this would be seen as a positive contribution and a way of galvanising a group that seems to be bickering with each other over funding. I still feel strongly this may be a promising way of increasing donations for the research, despite such a sudden unexpected initial backlash. If people still feel the Oscar and Boston route of ‘give me your fucking money or your a bunch of cunts’ way is the best route, so be it. On Mew’s suggestion i emailed the PFS Foundation with my suggestion’s. I had a courteous reply from Dr. Santmann, asking whether i wanted to help with funding efforts. He said to give him a phone to discuss, which i haven’t as yet. I’m not sure where i could help and i don’t think i have the time at the moment. And after such an initial reaction to me/my suggestions, i’m not sure if i want to be involved and would feel pretty uncomfortable doing so. I’ll speak with him soon because i have the utmost respect for him and what he’s doing for us, i will help if i feel i can and i would like some answers for myself anyway before donating. But some further input here from Mew, Awor (or other people involved with the forum or PFS Foundation) or other users, would be appreciated. I don’t want to be stepping on people’s toes where i’m not wanted and wasting my time.

FYI, they expect non-profit status in a matter of weeks. He said he didn’t want to get involved in fundraising until then, so it sounds a bit up in the air anyway until then. He also mentioned there are ‘other complicating factors’. If someone else could shine a light on these comments in the meantime, it would be appreciated.

#232

If my tone with either of you is harsh it is because I have given up on you both and could not care less of your opinions. Neither of you are capable of understanding where this community needs to go and what it will take to get there. You are part of the “constantly theorizing about nonsense” set and as such you are a detriment to this community. You represent the millions of dollars fleeced from the gullible while research projects remain unfunded. The notion that people are coming up with “vital discoveries”, as you call them, is laughable to be generous. Suffice it to say the idea that either of you think there should be a debate on whether or not we should support this research, or attach conditions to it’s support, speaks volumes about your mental state. Keep your $20 for further candida treatments, I’ll cover it.

FYI- I’m perfectly aware of the NPO status as is everyone else.

#233

notcrashedyet - Try and edit your posts ffs, this an important thread and it could deter people if they have to read through a wall of text. Mocking a guy for claiming to be alpha then saying he wasn’t because you were and can spot one is also a bit pathetic, even more so in this context.

I would agree that donations should be a personal thing and not mandatory, that doesn’t take into account the many guys on here whose careers have been damaged or destroyed by severe physical and mental sides, may have families etc. Not to mention the biggest economic crisis since the 1930s shows no sign of ending. I would hope that anyone who ‘only’ has severe sexual sides which haven’t affected their earning potential would be willing to give as much as possible from their disposable income given the importance of this in anyone’s life, which hardly needs stated.

I would go back to an earlier point I made that a possible reason why funds may have been low was that guys were donating incrementally; it is perhaps better to judge six months down the line, though a kick in the rear to remind people can’t do any harm. It also appears that some have been holding off until the Foundation gets NPO status to donate big sums which again distorts the picture.
There is also some confusion about how tax applies outwith the US, I personally e-mailed them and was told to ask an accountant! This doesn’t affect my willingness to contribute, but it would be good to know as much as possible is going where it is needed.

#234

i lost my job due to pfs, and currently have no income, whatsoever … still, i am in the process of selling some belongings to try and scrap together what i can for a donation … even if you can only do a very little bit at a time, that is ok, everyone just do the very best they can, as often as they can, and if we all stick together, it will begin to add up … just do the best you can guys

i have heard it mentioned before i think, but if it can be established that accutane, saw palmetto, ssri’s, lupron, birth control etc. etc. is capable of causing a similar if not identical set of symptoms, we can potentially increase the people making donations astronomically … the future is bright, but for now it is up to us

guys, just do the very best you can, that is all any of us can do

#235

I wonder if becoming a massive douchebag is a pfs side effect. It would definitely explain a lot of posts here.

#236

Boston, after this one, just leave it, we’re wasting our time here with this, ok. Having to constantly defend myself against your ludicrous statements and wild accusations isn’t taking you or us further forward. For the record, and what should be obvious in my posts, is that i fully support the research, Awor’s theories behind the research and then obviously the funding of it. I don’t theorise about anything, i believe it’s probably some androgen receptor problem that somehow decreases our response to androgens, as a result of the potent DHT hormone returning when we quit. I believe, this is much the same as what Awor’s research is based around but at a molecular level, correct me if i’m mistaken. I haven’t looked into it at greater detail yet. But i’m fully behind it. I’m not behind excluding people or punishing them for whatever reason. From a selfish point of of view, i want to hear what all sufferers are doing to get themselves better - they might hit the jackpot. I’ve taken a lot from the board and used it to good effect already - none of this involved the research. So i don’t understand why you would hedge all your bets on Awor’s studies and try to force everyone else to do the same. Awor might not even find the right answers we need. And my posts were mainly about increasing the funding by using a more structured, fairer and clearer effort. Your starting to make things up to suit your own agenda.

#237

Definately sitting on your ass and expecting others to support research while you indulge yourself in delusional thoughts about having the answers to PFS could be a side.

#238

wtf are you rambling about?

#239

No, they won’t “hit the jackpot”. This is nonsense. 19 is a doctor with the ability to perscribe himself whatever he wants and he’s had no success. If he had no success the idea that one of your contemporaries is going to find something is beyond ludacris.

#240

Delete my account or whatever but this had to be said; Boston and Oscar… you guys are two of the most pompous windbags I’ve ever encountered on the interwebs (and that’s saying something considering the level of discourse one usually finds on the net).

Your every post reeks of self-importance, utter douche-iness, and complete disregard for basic courtesy and regard for others.

Have nice evening though.