Why has so little been done over the years?

General Discussion
#1

I don’t mean this in an accusatory way. But it’s been decades since this drug has been on the market and during that time very little has taken place to try to remedy this situation medically or legally. Only a handful of patients have gone public. If it wasn’t for Mitch, Axo, Awor and John Santmann this issue would not have progressed at all. I was speaking to another recent sufferer today about some posts made by Randy Santmann (RIP) from 2008 and we remarked that we’d be in the absolute stone age had his father not got involved and generously put several hundreds of thousands to work.

If 1,000 patients had put in 1,000 dollars over the course of a year that would have amounted to 1,000,000 for research. If this had been done over the course of a decade we’d have had 10,000,000 USD invested in this issue. It is very likely we’d have a mechanistic understanding by now and would be working on trialing therapeutics with an animal model and launching class action lawsuits. Instead, until very recently, we have relied almost exclusively on John Santmann to bankroll the entire effort. My god. What is everyone doing? I know this disease breeds apathy but this is not respectable behaviour. We cannot just rely on others to do everything.

This dynamic needs to change. It’s almost 2023. We need to get behind the serious effort that currently exists and push. Enough with the excuse making. It is completely unacceptable to waste our lives in this mess. No one enjoys going public about this or parting with their money, but there simply is no other choice.

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#2

How many people are registered on this forum? I believe it’s several thousand if I’m not mistaking? That is incredible when you look at it from this perspective. If just maybe a third of us donated less than $100 a month, we’d be at that $1,000,000 mark in less than a year as Erik said. Compound this with more willing to step out of the shadows and we’d have a cure incredibly soon.

This is bigger than PFS. This is about every man and woman who has been damaged by pharmaceuticals they were told were safe. I’m going to keep saying it. This would save thousands of lives if we find the mechanism is behind this. Let’s step up.

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#3

Completely agree.

I urge everyone to set up an automatic monthly donation of whatever you’re able to miss. I don’t have a high salary but over the last year I have donated well over a thousand dollars without even noticing it in daily life.

Consider all the money you’re spending on coffee on the go (like Starbucks etc) or lunch at work. Try and save a little on that and bring your own lunch for instance. You’ll be able to safe up serious amounts of money each year.

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#4

I am now officially subscribed to donate $100 monthly. I know this is a lot for some people, but if need be, try to make small sacrifices here and there (coffee, snacks, eating out, etc.) to donate more. However, every bit counts. Remember, if just 999 more people do what I just did right now, we’d have $1,000,000 by his time next year. You can’t put a price on your health AND this keep in mind that this is only temporary.

I’m going to talk to my friends and family over the holiday season to see if they’ll help. I’m sure some of them will.

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#5

I will also be talking to friends and family in the next few weeks to hopefully raise some money. We need more people doing this, especially since many members are unable to work.

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#6

Visiting all the pfs doctors, making hormon paneels and buying medications a pfs patient spents between 5000 and 100.000 Euro:

Privat Urologists, Andrologists, (only Zitzmann is a pfs specialist payed by health insurance) Wonderdoctors, penis examinations, monthly hormon panels, consultation with pfs soecialists by phone, multiple antibiotics to cure brain inflamation and lyme borreliosis in the brain, multiple antibiotics to kill gut microbiome and get a microbiome transfer, microbiome transfer, all connected with a high expensive brain and gut infection specialist and high expensive laboratory tests, auto antibodies elisas, hcg from Merck and Ferring, Clomid, Enclomiphe, Proviron, Mifepristone and Ella female abortion pills, Electric Helmets, tribulus, cistus, cistance, pelvic floor training, shockwave therapy, forbidden illegal steroids, medication and substances from darknet and black market resellers, cats claw and all the south American potence teas, Aridmidex, Arginine, Citrulin and all the proteins, Vit B 12 overdose infusions, Vit D 3 overdosed, Vit C Infusions overdosed, Glutamin, Glutathione Infusions, Vit B Conplex overdosed given from privat pfs specialists with never ending costs and bills for month, Doctors and specialists wirh very special treatments, Immun apharesis, extrem expensive and need permanently with high expensive immun lab tests, sodium Butyrate and thousands more.

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#7

What a sad and accurate list. This must change immediately. We have to understand that this approach has a track record of complete failure over many decades. Enough now.

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#8

Day by day more pfs patients commenting on pssd subreddit identify with the solidaric and lovley pssd community. Campaigns like faces of pfs, pfs photo campain, pfs patient spotlight we need to reintegrate the community in thats whats going on again. Some are shy to speak out in the podcasts.

A littel minority has built up such a pressure to inject and to “recover” (with the hammer into the skull), that the majority feels guilty not to recover and the real pfs victims hide totally.

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#9

These are not the recovery chats, there have been the false hope from the pfs hormone doctors from the beginning and there have been some very sustainable intruders stories which influenced the community.
From the Merck surrounding?!
No way!
Conspiration theory!

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#11

Agreed, for such a severe disease, we only have a handful of people donating.

Each to his own capacity of course, but even if it’s only a small amount… something.

I’ll be donating more starting next year when I have more funds available.

We all must do what we can.

Nobody is coming to save us people. We must do it. Act now before finasteride becomes obsolete and the clinical interest fades away. Do not let this happen. Let’s keep the momentum going. Everybody step up.

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#12

We really need to think very soberly about our current situation.

There is a very logical way out of this. Discovering the mechanism and definitively linking the drug to the condition will enable very large grant funding and class action lawsuits. The funds from this can be funnelled into therapeutic development. The path out of this situation is very clear. But it isn’t as comfortable as sunning one’s balls or ordering herbs online.

Research and class action lawsuits are going to take time. There are certain time constraints we don’t have control over. However, getting resources and focus on this issue is certainly in our control. And if we get going now those of us who are in our 20s and 30s will be able to reset our lives with new friend, relationships etc. Personally speaking, right now I can’t partake in sports, I can’t enjoy romance, can’t ride my innate ambition to a productive and successful existence. It’s paramount that we push hard now and get an extremely serious and robust effort underway. This is not a criticism of what has been done thus far. But if we are to get out of this in a reasonable timeframe we need to act now.

If we don’t get going now we run the risk of waking up 5 years from now with no clear end in sight to this complete bullshit. We only get one life. We shouldn’t be alright with wasting it like this.

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#13

I had a few conversations with people who would love to donate but they have not donated since they don’t feel comfortable with the lack of transparency with the funds held. I think more money could be raised if we knew where funds are being held with seeing a notarized statement from the bank ? With transparency the community will always know the amount of money raised to date ? When money is withdrawn, it’s good to know where it’s going and much?

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#14

I understand the desire for transparency but don’t you think having to provide a notarised statement is a bit much? The president of the PFS Network, Mitch, is a long time sufferer who himself donated 40,000 euros from his personal account. The charity is officially registered in Australia. Mitch did a gofundme which his friends, colleagues and family donated to for the benefit of the charity. There’s really no reason for people to assume malfeasance.

I’ve never seen such onerous demands made of other charities in my life…

#15

The transparency criticism has been around since the PFS Foundation was founded in 2012/13 and I struggle to understand it. We’ll say the same thing as when people used to ask for transparency from the PFSF.

As a registered charity in any major country globally, you are required to submit a financial report and audit report annually. Both are publicly available on charity databases, in the case of PFS Network, it’s on the Australian Charities & Nonprofits Commission website and takes about 2 minutes to look up. I’ve seen second hand reports of some absolutely laughable accusations about my situation personally, asking whether I’m pocketing funds raised for personal gain. Firstly, our charity would be deregistered as soon as an auditor caught wind of this. It would also be illegal and I’d receive either a fine or jail time, or both. Secondly, I work full-time in a high-paying role for a tech company, so I have absolutely no need to set up a personal piggy bank.

What could I or any other member of our charity possibly have to gain from this? The amounts I’d be siphoning off would be less than my annual salary.

In our case, the funds we’ve raised are also publicly available on our website: pfsnetwork.org/donate. We regularly provide mailing list subscribers updates about funds raised and current projects, and we go into more detail on quarterly webinars. These webinars are open for anyone to attend yet we tend to see the same 15-20 faces every quarter with little/no attendance from those criticising our work.

I really struggle to understand how much more transparency we could provide and frankly, the argument feels like a thinly-veiled excuse for those who don’t support our work or organisation.

This isn’t aimed at you personally either. It’s a public statement regarding the ask for transparency.

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#16

There is the famous cave allegory of Aristotiles, which is traced back to Socrates.

Young men sit in a cave around the holy hcg godness from Merck and scream I am healed all time. However, no one dares to come out of the cave.

Then some brazen blasphemer comes along and says, “there’s the light on the horizon, all you really have to do is get up and go the way outside.”

They are in ugly rage about this “You forbid us, I’m healed to scream, and you want to take our cave away from us” and no matter what they do out there, they’re angry.

Trust those who promise to bring the twilight into the cave, the main thing is that nobody forces them to come out of the cave. Anyone who tries gets to feel their rage and anger. Thats not a personal thing.

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#17

The allegory of the cave is perfect in this context.

#18

I am addressing these concerns out of total respect. Transparency is the only way when a group is handling a large amount of money. People who donate to a charity should know the exact amount in the funds to the date. There is nothing wrong to ask for this type of information when people are donating their money on a monthly basis? It makes people feel comfortable.

The concerns I heard were the lack of transparency of the pfs network. I am not sure why we are redirecting this discussion to the PFS foundation?

Less than a year after its launch, the PFS Foundation announced its Harvard Medical School study, followed soon after by its Baylor College of Medicine study, both of which were well under way, complete with formal protocols, at the time of those announcements:


By contrast, it’s been–what?–two years now and the PFS Network’s first (and only) study is not even near ready to go, to say nothing of the fact that no one has ever seen a formal protocol from the institution that is apparently going to conduct the study. My point is no reason to compare or attack the pfs foundation. I wish both organizations united.

PFS foundation posted the patient-recruitment flyers, complete with contact info at each respective hospital:

Also, if Mitch is so well paid and dedicated to this effort, has he himself donated any money to the PFSN? If so, how much, and can he verify it?

#19

My guy, did you…read my reply above? Every one of your questions about transparency of funds has been answered.

The comparison to the PFSF was made because the same concerns about transparency were used by patients many years ago as an excuse to not contribute. There was no “redirection”, merely pointing out these concerns are not unique to our organisation, but seem to be concerns that persist in the patient community, despite the very public information available to ease them.

It’s been one year and we’ve continually and painstakingly provided updates here and via our mailing list about the status of the study, including why much of this year was spent planning sample collection and obtaining ethics approval. It’s also beginning in Feb?

There’s also a lengthy description of the study protocol on our website which we’ve provided dozens of times here and via our mailing list.

Lol.

I do want to say publicly this is a little inaccurate, but you get the point.

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#20

You realise the PFS Foundation’s studies were exclusively funded by two families, most notably John Santmann. John Santmann personally invested somewhere between 500,000 - 1,000,000 USD.

The broader patient community collectively contributed a fraction of this amount over its 10 year history.

Maybe it’s time for us to stop being entitled and coming up with ridiculous excuses to not support and get involved? Wouldn’t that help get us to where we eventually want to be? Call me crazy.

Mitch already addressed this and doesn’t need my help in the matter, but I want to highlight it again. Did you bother to show up to any of the 8 webinars hosted by Mitch this year? He spends almost an hour giving specific details about the studies and how things are progressing. I’ve attended each one this year and it’s almost always the same people attending. Out of a patient community of many thousands. There’s also an in-depth email that gets sent with updates every quarter, which addresses points such as the understandable delay given the need to collect new samples. There is also an in-depth description of the study. There are also regular updates here, on the forum, discussing the delay due to the need to collect samples etc.

You mention the need for transparency when handling “a lot of money”. Where is this “a lot of money” exactly from this horde of eternally skeptical patients? Half of the first study was funded by the PFS Network themselves. I’ve been trying to recruit patients for our monthly donation group for the better part of a year now. I’ve messaged individual patients, posted on the forum numerous times, and posted on reddit. We managed to get 46 members, many of whom are my personal friends and family and those of some other patients. I would have been happy to address any reasonable questions and concerns. But no, there was little interest, as is sadly the case with the webinars and every other initiative that involves patients showing some maturity and low time preference.

Seriously man, from one patient to another, can we grow up now please? I don’t want to be rude but it’s just embarrassing at this point. I’m not even part of the PFS Network but as a patient who is actually serious about getting out of this in the future I cringe at the level of excuse making and lack of gratitude from a group of grown ass men.

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#23

The transparency criticism has been around since the PFS Foundation was founded in 2012/13 and I struggle to understand it. We’ll say the same thing as when people used to ask for transparency from the PFSF.As a registered charity in any major country globally, you are required to submit a financial report and audit report annually. Both are publicly available on charity databases, in the case of PFS Network, it’s on the Australian Charities & Nonprofits Commission website and takes about 2 minutes to look up.

(My response ) Sorry, My friend and I can not find the site of the charity database. Why not just provide the link to the database on PFSN webpage to make is easier for everyone to find ?

I’ve seen second hand reports of some absolutely laughable accusations about my situation personally, asking whether I’m pocketing funds raised for personal gain.

( my response) Why are these considered laughable accusations? With all due respect, the PFSN donors should just accept your word on everything? You seem very sensitive and take it personal when people are asking to see a record of finances?

Firstly, our charity would be deregistered as soon as an auditor caught wind of this. It would also be illegal and I’d receive either a fine or jail time, or both. Secondly, I work full-time in a high-paying role for a tech company, so I have absolutely no need to set up a personal piggy bank.

( my response) You think theft is OK if it does not exceed a persons salary income? I don’t mean to accuse you of stealing, just asking for transparency in a respectful way. It isn’t reassuring to know that you make a “high paying tech salary”. A basic level financial transparency in this operation would be reassuring.

In our case, the funds we’ve raised are also publicly available on our website: pfsnetwork.org/donate 6. We regularly provide mailing list subscribers updates about funds raised and current projects, and we go into more detail on quarterly webinars.

( my response) For a charity, the record of funds spent is as important as that which are raised. The allocation of those funds to those same projects of interest would we be useful as well. Trying to pass off your powerpoint on money raised is sufficient ?

These webinars are open for anyone to attend yet we tend to see the same 15-20 faces every quarter with little/no attendance from those criticising our work.

( my response) I am not criticizing your efforts, however there should be access to obtain legit information at anytime. We should be able to obtain studies showing the formal protocols at any time or read “ use of proceeds” document that outlines how much money is set aside for research projects and how much, if at all, goes to administrative expense, such as web-hosting fees, annual tax returns, etc? Can you share that document with the rest of us?

Rig22:

Also, if he is so well paid and dedicated to this effort, has he himself donated any money to the PFSN? If so, how much, and can he verify it?

Lol.

( my response) Why is this funny? You know what everyone is donating, but we have no idea what you are donating to the fund… Again… transparency! Just like when investors want to know if Warren Buffet buys back stock within his own company.

I really struggle to understand how much more transparency we could provide and frankly, the argument feels like a thinly-veiled excuse for those who don’t support our work or organisation.

( my response) I appreciate you want to be transparent so please share with the PFSN group …

(1) I ask to share a copy PFSN donors of the OFFICIAL protocol, i.e., the one on the letterhead of the institution that’s conducting the study–including the name of the chief researcher and confirmation that the study has received sign-off from the institution in the form of what’s called “IRB approval.” If this study is really going forward, all that will exist.

(2) Why, according to the Australian website that houses details of local nonprofits, it appears as if one of the other board members is a RELATIVE of Mitch’s. Nepotism does not make for good transparency.

(3) Does the PFSN intend for its first study to be published in a reputable, peer-reviewed journal? Or are is PFSN hiring this researcher just to produce and hand over a report directly to you? If the latter, PFSN will have a hard time getting any institution to be involved in any followup research, because non-peer-reviewed research counts for practically nothing in the reputable scientific community.

I look forward to learning more!