Is the PFS Foundation BS?

General Discussion Media & Awareness
#1

Is the PFS Foundation a bunch of BS? Everyone is donating lots of money to this “organization” but what are they doing on a daily basis? Are they sitting around drinking coffee, creating armchair theories at their leisure?

If we are donating our paychecks to this supposed organization, I want some REAL feedback as to what they’re doing on a daily basis. I want monthly reports about what progress they have made. I think members should be able to provide feedback and suggestions about where their research is heading. If they don’t have feedback from the real PFS suffers, there’s going to be a real disconnect between their research and the reality of what’s going on in our bodies.

As far as I can tell, with their current progress rate, we’re GUARANTEED to not find a cure for PFS within our lifetimes.

I would LOVE to be proven wrong about this MEW and others. Please prove me wrong with some hard data about what these doctors are doing on a daily basis with our paychecks.

Why doesn’t the PFS community, and active donators get to interview these people before they’re hired? Why can’t we vote in the doctors who we think are more likely to help us? Why don’t we get a say?

And yes, I’m partially raising this post due to the closing of the Theory thread yesterday. If we can no longer have our own theories about what PFS is, and we’re supposed to place all of our FAITH and MONEY in the hands of the PFS Foundation, then we deserve monthly feedback about what they’re doing. Maybe even weekly feedback.

We’re suffering on a daily basis with this disease. Some people on this forum have struggled on for over a decade. I don’t know if they fully understand that. I don’t know if they fully understand how much of a struggle it is to live with this disease on a daily basis. If they understood that, they’d be like us, dedicating every waking moment to trying to feel better. The least they can do is prove to us that they’re making progress.

#2

Before this becomes a shitshow…

Quick answer…

The Dr who heads foundation lost his son to propecia. Nuff said

They fund and organize studies for us. Studies take time. Publishing results takes time. There would be nothing to report weekly or monthly because its all about the studies.

Harvard study is done. We probably won’t hear back about it until at least a year. Baylor study is looking for participants. We won’t hear results from that until its finished + 1 additional year. Italy study just started. I haven’t been here long but that’s a Iot studies considering pfs foundation hasnt been around for that long. If you want to compare us to say accutane ppl, they have 0 studies, 0 foundation. They in fact are depending on us and accutane has been around for a long time

#3

This posts disgusts me you ignorant imbecile !!!

What exactly are you doing or have you done to help our cause???

Let me answer this properly in my next post, in the meantime, shut the fk up you ungrateful st!

#4

This post is disgusting. I cant believe you typed that out.

Do you realize that the foundation is our only hope? Without them, no serious scientists would be looking into this. We would be stuck with homebrewers in the theories section. The theories section has been open for business for the last 10 years you nut. Nothing has come about. The foundation just opened its doors two years ago and has already financed and organized major studies, which are just now being completed. Baylor and Harvard are top tier institutions. They are the only realistic hope of ever finding a cure or treatment.

Do you really believe they are stuffing their own pockets? Even though the son of the founder died because of PFS??? Are you that stupid???

Get the damn study filled in a more timely matter, and you will get your results. Right now Baylor ist STILL! looking for participants, even though they announced the study in October 2013. If anybody has a right to moan, its the foundation because the community is not signing up for the research it initiated.

You are the typical ungrateful peasant, who would rather theorize in the Theories section for the next 10 years, than participating in a study. People have to fly over from Europe because not enough of you guys are signing up.

#5

If you hadn’t noticed, in the last 12 months, they have funded 3 major studies, Boston, Texas and now Italy. As the other member said, these things take time!!!

  1. Let me ask you this, where would be without them?
  2. How much have you donated?
  3. What have you done to raise awareness of this condition?
  4. Have you took part in any of the studies?

Who do you exactly think makes up the PFS foundation? People that solely deploy all they’re time and effort to the foundation? No you numb skull, its run by John Santmann, father of the deceased Randy Santmann that lost his life to the drug. John is a fucking Legend in my eyes, he works full time as an Emergency room physician, has a family of his own, yet still has time to try and help all of us here and certainly doesn’t have time to sit around drinking cups of coffee you inconsiderate mouth piece!!!

Another member of the foundation that I know very well but I will not name, is heavily involved in the research, media and overall running of the foundation and he too works full time outside his work he does for the foundation!!! He is also overseeing all these studies single handedly and he made it possible for me and other PFS victims to be able to afford the expenses of taking part in such studies.

The foundation also updates it’s website regularly and sends out newsletters too!!!

ALL the members that form the foundation are volunteers, giving up,they’re FREE time to help us, so why do you think that gives you the right to say who is on the board? You really are clueless!!!

How can you say you don’t know if they are aware of our suffering when the founder of the foundation lives in daily grief due to the loss of his Son to Propecia you idiotic pathetic being!!!

Yes the foundation don’t protest to finding a cure but a better understanding of the mechanisms of PFS that could lead to a potential treatment!!!

When there is progress to report you have it here or on the foundations website, in the meantime, show some respect and wind your neck in, without them we’d be down stream without a paddle.

#6

I think OP watched a lot of hollywood movie.

#7

OK. I stand corrected. I will admit when I’m wrong.

BUT, I still think more insight and transparency into what the PFS Foundation is doing would be helpful, and make me and other members more motivated to contribute financially and physically. For instance, a monthly or tri-monthly video about what they have done, even if it’s very minor and not earth shattering, would make us as a community feel more connected to the PFS Foundation. I just want more feedback about what’s going on. Right now, it seems like a black box.

I have contributed to the PFS Foundation. Admittedly, not much as I have just developed this disease. But I am planning to contribute much more in the future. I may set up a monthly contribution. But right now, I don’t really have a good, concrete understanding of what the PFS Foundation is. I want to understand what I’m contributing to exactly. What are they doing on a daily basis? What is this research they’re conducting? Who is working on it? How do they research it? What equipment are they using?

I want to hear more about people’s personal stories who have contributed in these trials. What happened? What are they doing in these trials? Are people at risk if they participate in a trial, or are they simply taking blood samples, MRIs, ect?

I am probably not the only one on this forum wondering about these things. Maybe the reason why participation in trials is so low is because they sound scary. People are wondering, if I participate in a trial, will I get worse? What is going to happen. Answer these questions for us, and people will be more inclined to participate.

#8

Well there is not much to say, except:

Baylor, Harvard, Milan.

They publish the studies eventually, so you will see the results.

What more do you want?

#9

Unfortunately years of theories have produced very little results. If they had produced results we would have a very good treatment by now. I think the best thing that could be done by someone would be to post regular updates on the number of participants required to complete Baylor. Last I checked it was 10.

If you want more information on the PFS org you can see it here (link below). The org isn’t big enough to qualify for auditing. Its pretty amazing what they have been able to accomplish with such limited funding. Lets try not to let our desperation lead us down dead ends. The people that worked on getting this together realized that this was not a simple fix.

http://www.charitynavigator.org/index.cfm?bay=search.profile&ein=460573960#.VKtI3emPKcw

#10

@gham

There are three things you can do to speed up the process (finding a cure/ remedy):

  1. increase donation amount
  2. participate in studies (right now Baylor is looking for participants desperatley)
  3. convince other members to either donate more or to participate in studies.

While you do this, you can wait to see if your body can naturally recover, through mechanisms unknown to us as of yet (a few people recover, many stay the same, some worsen over time).

Of course you can refrain from further poisining your body by stoping alcohol consumption, smoking etc. The usual stuff. However doing so does not mean you will recover.

Theorizing on the Theories section, aka mental masturbation, is probably the least effective way forward. It didnt produce results the last decade and it wont produce results in the next decade. More than anything it distracts people from goals 1. 2. and 3.

Again, if somebody should be upset, it should be the foundation, because the Baylor study is taking so long to fill. We didnt support the studies, thus they could not be completed in a timely matter. No excuses regarding this, as the foundation is financing trips, for those who cant afford. Especially for the US guys, its a disgrace.

#11

Seriously guys. They’re a non profit organisation headed off by a dude who lost his Son because of this shit, they’re not taking your money. It’s being put to the best possible use it can, at lightning speed for medical science. The people fucked by accutane and ssri’s have a much bigger community than us and they’re still not medically recognised. Mostly cause they don’t have A foundation or a Mew or An Awor. (or THETIGERSHULL, Second Amendment and the other guys who got us media attention)

That’s more than just privilege.

And the people who expect the foundation to fill them in on every single last detail of the studies and their intentions are obviously living in a fantasy world. The Foundation are standing up to one of the biggest corporations on the Planet, if they release all of their information to us, they release it to Merck. Which allows Merck a chance to hire the best lawyers in the world and build a case before the information is viable enough to be used against them. That risks us losing the lawsuits and consequently the fucking money the foundation will need to fund research into our cure.

Do you understand now? They’ve your best interests at heart.
[/quote]
Quoting myself from another similar thread. This is why we don’t get updates on everything they’re doing. Use your brains fella.

#12

Admittedly, communication from the Foundation hasn’t been the best.

Cut the OP some slack. He’s relatively new but informed now.

I’m sure he wasnt the only one asking these questions, so he’s actually helped out in a weird way.

#13

Yes, again I apologize for my lack of gratitude. That was bad form.

I am extremely… EXTREMELY… EXTREMELY grateful for anyone who is helping our cause.

I am going to participate in the Baylor study. I didn’t really understand what all was involved in participating with a study. I have never done this before. It looks like it’s just one trip to Baylor. That’s simple enough.

I am probably the ideal case for them. I have used propecia for 14 years, and am suffering from most of the effects.

After spending last night shivering and profusely sweating all over my body, I began to wonder if this disease may end me soon. I might as well make myself useful somehow.

#14

Hi Buddy, I also want to apologise for perhaps been too defensive towards the foundation but they have helped so much already and continue to do so. Good on you for offering to do the Baylor study! I did the Brigham one in Boston, flying all the way from the Uk thanks to the help of the foundation!

At the onset of my crash I had exactly the same as you, felt very cold one minute with very low core body temperature, yet when I went to bed to sleep, I would wake after a few hours sweating profusely, this is all systematic with the CRASH that most of us have experienced. Things will get better for you, they have for me, now I’m perhaps 80% recovered mentally, physically I still have lost so much muscle and gained a bloated belly, sexually I’m ruined beyond repair, my sexual function has not returned in close to 2 years off the drug.

Once again, sorry if I leaped to the defence of the foundation, you sound like a decent guy, just in the early onset of your hell hole that is PFS. I wish you well with all my heart

#15

It would be awesome if you participate. These studies will eventually bear fruits. I am certain of that. We owe it to ourselves to participate, otherwise it will be increasingly hard for researchers to take us seriously. After all, how bad can it be, if guys living in the same country, wont show up for a study. I also have low body temperature problems (before PFS I never had this, actually the complete opposite, always walking around in a tshirt, even in winter)

#16

Hi Guys,

THETIGERSHULL, that is very, very encouraging to hear you had a similar experience to me, and you’ve recovered somewhat. Some nights I have been wondering if I will make it till the morning. If I could recover even 10% I would be grateful. It seems to be cyclical. I get increasingly bad for 5 days or so until I’m convinced I may not make it, and then I have a half day of relief, which is wonderful.

PVLD, it sounds like you also had this low body temperature problem. I bought a thermometer today so I can record my body temp. It is lower than normal, and I get cold quite often, even though I seem to sweat a lot, which seems to be a contradiction of terms. Made me wonder if I have a fever.

Thanks again all,
G

#17

This fever you describe is your present crash or at least it was for me any way, it’s 100% connected to your usage of Propecia

Look back through my old posts from July 2013 when it was red hot summer here in the Uk, yet I had really bad cold sweats whilst rotting away in the mental home due to my PFS

I only had these NIGHT sweats for maybe 2 months then they went all together, along with all my muscle too

#18

Some people around here seem to be promoting the idea that you recover eventually, well it has been years now for me and I still have PFS quite bad. Mentally, the side effects do lessen over time, sexually and physically I have seen far less if any improvement. However, without the most severe of the mental side effects life is possible.

#19

Its a great question, if it is even possible to recover physcially and sexually. Mentally I think it has been established, that recovery chances are quite good.

Obviousy the recovery section is very small, however there are some recoveries by members, which are not listed in the recovery section.

Some recoveries do sound strange though. Especially Chi seems to be a hypochdriac, that never actually suffered from PFS. Also cdnuts first posts when he came on here were absurd beyond believe (read them and you will see what I mean).

However there are some recoveries that seem legit. People like Mitch for example, who didnt promote himself as a recovery hero. Anyway, I think the chances are not great, for many it is permanent, until we figure out the mechanisms behind PFS and invent a treatmen/cure. Thus for most people, taking part in the studies is the best route, as they probably wont recover naturally.

And before Finatruth comes here and basks in his recovery glory. He has no credibility. His behaviour is too eratic, to take anything he says seriously. He derives pleasure from the fact that people are suffering here.

To have a better grasp of the recovery likelyhood, Mew could send out a mass email and ask to what extend people have recovered (those whos side effects lasted for 6+ month).

#20

I read cdnuts first posts and i can understand what he means. He is not absurd.