A letter to you, forum

@basementdweller yeh public awareness is key

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I hate to highlight this but

I don’t hold anything against any of the members who are currently unable to contribute as a result of PFS, or due to other extenuating circumstances.

But it’s really sad to see the number of people who aren’t even willing to donate something (whether that be their time and energy, or finances). The number of people who just say we should do xyz but aren’t willing to invest in any manner is sad.

Look, guys, we’ve been dealt a bad hand. Some of us worse than others. None of us should have to take on the burden of trying to figure out how to fix this disease, but well, sometimes in life you have to do stuff other people have the privilege of not having to do. It’s not fair. It’s not right. But that’s just how it is and for all of those who are capable of contributing in some way, we should. It’s not hurting your PFS in any manner, it has the greatest chance of helping you (right thing to do for yourself), it has the greatest chance of helping other people (right thing to do morally).

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The more this forum can get away from the idea that

not curing PFS = my life is over, I can kill myself now

the quicker we will progress.

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Thanks for this reminder, Borax. I will be donating today and I will respond back in this thread once complete. I don’t have time for anything right now, but I can spare some change and I will do that.

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There are a few recoveries that are not one and done / fly by night members. Maybe it’s 1/1,000 chance, but there’s still a chance:

Chi
Towm8er
Moonchild

Also, many have improved even if they didn’t completely recover. All this supplement talk though, people seem to forget the pillars of health:

Meditation
Exercise
Diet
Sleep

I don’t understand why we have to choose science OR health and wellness as a perpetual fight.

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The point is to look at what’s not working, not find reasons to just keep going as we are.

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funding and additional studies are clearly important

Experimenting with treatments and supplements also helpful, for example tribulis… not the cure but has greatly improved symptoms and improved my quality of life. I wouldn’t have found it if someone on here hadnt tried it first

BS recovery, from either a hypochondriac or a very mild case or a scam artist.

Not a severe case, not legitimate. Have looked at this case closely. There is a good chance that he actually is an alt account of scammer cdnuts or working with him.

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Yes, it’s probably significantly more than we can raise amongst ourselves.

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@Greek, thanks for your clearly heartfelt ‘letter to the forum’. I can tell it’s genuinely coming from a place of true concern and good intent.

Your recommendations are pragmatic,especially for the cerebral types.

I however don’t entirely agree with you on several important points. Please don’t take it personally, but I felt I had to reply just to put emphasis on a few things which I deem important for the health of our community, both in the present as well as the future.

From my interpretation your general argument concerns itself with four points.

  1. That people in the PFS Help forum should leave science to the experts and not bother worrying about something they cannot affect.
  1. Members should have a level of reverence towards the Foundation as a benevolent entity which we should be continually grateful for, and avoid criticising.
  1. The Foundation is very limited in what it can do to benefit the PFS community, so we should have very low expectations as to any future assistance from them, be it research initiatives, or otherwise.
  1. Don’t bother experimenting with ‘homebrew solutions’. Forget it because it never works.

And, I feel, your holistic thesis is fundamentally that nobody is going to help you and you cannot help yourself. Just accept your fate, and through it’s acceptance you will have the best chance of maximising your contentedness with your lot.

I take issue with all four of your main arguments, to varying degrees and I will address them one at a time before putting forward my thoughts as to how we can advance as a community.

  1. I feel that the Science should be something the community engages with. Even though many, including myself aren’t on the cutting edge of the biological science knowledge, it is important to engage the community in both attaining a detailed understanding of our present situation (what PFS actually is), as well as offer them hope as to what is realistically possible to help them in the future.

Without an understanding of a path forward, there is no way we will get people donating to the Foundation. Why should they? If there is no foreseeable benefit, nobody will donate. I know I wouldn’t.

  1. The PFS Foundation’s own mission statement (taken straight from their website) is the following:
    "The Post-Finasteride Syndrome Foundation’s primary mission is to fund research on the characterization, underlying biologic mechanisms and treatments of post-finasteride syndrome (PFS). Other goals include generating public awareness of PFS and providing support for patients suffering from the condition."

The Foundation was created, in it’s own words, for serving us. Nothing more, nothing less. It doesn’t exist for any other purpose, other than also attempting to remove Finasteride from being sold.

I see no reason to place them beyond critique. I also fail to understand why admins on this forum are so timid to ever air any criticism of anything the Foundation does (or doesn’t do).

I appreciate what they have done to date, but I also have many questions which I almost feel I’m not allowed to ask, lest I my comment gets deleted. I have been a member of this forum for four years and I have always felt criticising the foundation is entirely off-limits. I have seen members get blocked and deleted for having the ‘nerve’ to do so. Members quickly learn that doing so is taboo.
This, in my mind, is wrong.

Rather, us, the sufferers, should be actively engaging with the Foundation. There should be an active and ongoing dialogue. This does not exist with the exception of an odd member plucking up the courage to email Phil, or the sterile and impersonal Annual Address which is issued yearly.

In my mind, there should be a member of the Foundation right here on this forum, engaging with members, their raison d’etre, creating a dialogue. This is the only way we will get donations. Currently people see the Foundation as an ivory tower which ‘knows best for us all’. Do they really?

We need an essential dialogue with them directly. No through a few admins who ‘have their ear’. Sure there are people of many stripes on this forum, some of which come across as being desperate and irrational, but if the Foundation is true to it’s purpose, it must engage us on a personal level, and clearly communicate a long-term strategy. Their opacity serves nobody.

  1. Mark my word - members will only donate if they see a reason to donate. The Foundation must be clear as to how monies are being spent, what their strategy is, and how donation will yield a measurable benefit. You argue that the Foundation is ill-equipped to help us. If a Foundation set up with the express purpose of helping is is unable to do so, I cannot possibly see any way to advance. Unless we set up another Foundation - is that what you’re proposing? Or just simply give up hope?

  2. I cannot see how you or anybody else can possibly blame members for trying, in throes of desperation, to try things to improve their condition. If nobody else offers them any hope, it is entirely unreasonable to expect a person to just give up trying. A failure of leadership is the reason why people are resorting to potentially dangerous off-the-shelf solutions. Nothing else but a failure of leadership by the people who have dedicated a Foundation to helping us. If people would see a path forward, they can hold out hope that maybe, just maybe, in the next few years, there will be something which can improve them, at least a little. If they see nothing but a dark, unlit tunnel ahead, and nobody shines a beacon of light down the far end, they will experiment themselves. It’s as simple as that.

I commend the mods for creating the survey which at least gives people hope for something. I mean it is something, if not much.

But we need an active path forward. I don’t agree with your stoic and nihilistic approach. Yes, acceptance is helpful, but if one accepts too willingly there is no chance of improvement. If we’re to have a chance of finding ourselves out of this quagmire we cannot embrace our lot too generously.
The path must be illuminated by those who have the ability to agglomerate funds and contact scientists to advance research. This falls squarely in the lap of the Foundation. If a lack of funding from forum members is the main obstacle holding them back, they have little other than themselves to blame. And I feel, us as a collective are too accepting of their opacity, and it in turn harms all of our prospects to herald in at the very least a small improvement to our shattered lives.

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i find some agreement with you @orthogs

additionally, there are certain things that are just not realistic:

one example is making everyone change their minds on experimenting. the people that are going to do it will do so regardless how much we shame them.

and disclaimer i am not endorsing self experimentation, you can go to my recent history to discourage people from engaging in that activity.

what im saying is if we want to reduce this homebrew nonsense, we need to move forward significantly in both research and funding, and maybe even communication.

this looks like an obvious statement, but let me rephrase

in order to reduce harmful activities, we need progress

people will never change their minds otherwise

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Absolutely. With dialogue comes money from the hundreds of sufferers. Look at the Italian Foundation - they consist of less than 20 people in their entirety and have been able to raise significant money to fund at least four studies by Melcangi. It’s no coincidence either - their community is tight-knit and have an active dialogue with Melcangi directly. In fact they recently had a conference call where they all had a chance to speak to him.

If this kind of openness was present on this site and between us as a collecting and the Foundation, I am certain that much more progress would have taken place over the years.

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I am a science student and i will be writing a review paper on Post Finasteride Syndrome once my cognitive dysfunction improves. I will be publishing it in a local journal here. I will be allegedly sending more and more informational mails to doctors (derms and endos) in my country regarding the long lasting side effects of Finasteride, Accutane and Antidepressants.

Suggest me something if anything else i can do.

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I use Tryptophan to reduce anxiety and fear to improve my mood. Because it increases the serotonin in my head.

It doesn’t treat or cure, but it’s the only thing I’ve found after a lot of trying.

Thank you for volunteering! There are already plenty of literature reviews, e.g.

And, of course, our own @Axolotl has compiled a very comprehensive review of the existing literature on PFS as well as potential links to other diseases and other known mechanisms: https://www.propeciahelp.com/post-androgen-deprivation-syndrome-abstract/

Since I assume that a paper that you may write will neither have the same weight as the first two nor the comprehensiveness of Axolotl’s paper, I don’t think this is an angle worth pursuing.

What exactly are you studying and what is your level? We are always looking for people with advanced skills in statistics and related tools, e.g. “R”.

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Only chiming in on this thread to say I disagree. Having been to see Gillian Hamer myself she remembers him, and without giving too much away let me know he was VERY serious about curing PFS and by the sounds of it put a LOT of money into doing so.

Take comfort in that though. A genuine, serious case did in fact get better.

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It took us 1.5 years to get around 230 people to take a free survey that only takes at most an hour to complete. The hundreds of people that would donate do not exist and never did. Everything was funded by very few individuals who donated significant funds. The community at large has donated an amount in the low 5 digits. That is over around 8 years and despite a lot of hype and initially a lot of communication from Awor, when things started in 2012. Hell, I can calculate my share in this donations and it is significant, same is true for some other staff members here, which means the community at large outside the big donors and the staff has contributed very little.

Just for reference, for what we would love to do and what we think we need to do, we need around €350k. Unless there is a fundamental shift in the community, this is not going to happen. And sorry to be sarcastic, but a scientist of the level that we need will not do a sit down interview with a couple of guys who do not understand the science in the hope to get another €10k in donations (and that is optimistic). Not going to happen. This level of expectation is way beyond what we can reasonably expect. We need them more than they need us. And we are neither important nor wealthy enough to demand this kind of dedication, unfortunately. People need to understand our position in this world. We are a small, obscure group with very little resources and a problem that is widely unknown or even dismissed. Some of the expectations are completely at odds with the reality of our position.

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This is something that everybody needs to understand. Genuinely worthwhile scientists in our relevant field are in short supply. Ones who are actually interested in researching our condition are even more scarce. They’re not just at our beck and call.

If we want them to work with us we have to be organised and mobilised; a hell of a lot more than we are currently.

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@Northern_Star, it isn’t just about hundreds of people donating. If 20 people donated large sums that would also prove to be valuable.

Melcangi did just that. He is a scientist of the highest repute in his field. I don’t think it’s as unreasonable as you seem to think.

The fact is that The University of Milan has produced insight into our condition - more than any other institution over the past few years. One can debate the significance of their findings, but based on interest and sheer output volume, they remain to be surpassed.

Has exactly what the €350k will be used for been communicated to the community? I struggle to see why we would need such a large sum in order to forge forward with research.

This is where I particularly disagree with you. For a start, new people are joining this forum every day. That’s a heck of a lot of people since eight years ago in 2012. The more people are engaged in the dialogue the more likely they are to donate. Simple as that. I don’t see how that can be refuted. Heck, it’s also not outside the realms of possibility that some members of this forum are wealthy or have wealthy relatives who would contribute. But the dialogue and the mission and the roadmap just isn’t there, or at least hasn’t been adequately communicated to the forum members.

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No universal remedy indeed, certainly not 100% cure, but some and they are not so rare manage to continue in better conditions, regain some of what they were and manage to potentiate these elements of recovery. So no, it may not be miraculous and many think that a more favorable outcome is impossible but nevertheless …

Very often this goes through a phase of “acceptance” which does not mean being totally resigned and accepting this unjust fate without doing anything but rather establishing the observation of what we have left, stop going round and round about the injustice of what is happening to us and about this feeling of guilt that almost everyone encounters and start a fight with this pathology with its many faces. To be able to exchange while being understood is of capital importance for the future…

We must never forget that PFS is a relatively recent syndrome that is talked about much more than a few years ago but still appears to be relatively rare, why and what can we do? DARE to talk about it, register as a victim without shame because there is none, help the cause with your abilities and stop waiting for others to find the solutions. This is not a criticism, but we must recognize that if the lament is legitimate and understandable, action is necessary! Everyone can tell their story, write again and again but not only on forums: to the media, to Health Agencies, to Ministers, to researchers,… DENONCER can also help you and allow others, because you are much more numerous than the numbers show us, to express themselves, to make the community grow.

The American Foundation is an unhoped-for opportunity, where would we be without it? But it can’t do everything, so how can it be strengthened, how can it become a relay? By investing, as always, in its own way, financially but not only, by encouraging the creation of small associations in each country,…

I am not a doctor, not a scientist, just a mother fighting simply, humbly, with few means, but I see that it is possible to make oneself heard, to obtain some results. Of course, we are small in front of a huge machine that can frighten us, but is that a sufficient reason not to try? Every little progress contributes to recognition, opens some doors for the whole community. Why hide, what is there to be afraid of? Isn’t it legitimate to ask for help, to point out the flaws in the system?

What solutions are available to us? Waiting in anonymity for others to do all the work will take a long time, too long, too long…

Let us be, let us be proactive. You have a wealth of knowledge on the subject and no better explanation of this syndrome than you can explain it, you can’t imagine the potential of your actions.

Be aware that people who study PFS in health institutions do not have a tenth of your resources, it’s incredible! And by telling them about your ills, your experiences, by showing them your analyses, by making yourself known,… You have an influence that can lead to the initiation of studies, care pathways, additional examinations, new alerts, better protection of future users, …

Thank you for having read me, I do not judge you, I know that some people undertake like these young people who are currently working on a future European Foundation, I just try to tell you that together we can do much more. Don’t be afraid anymore…

Translated with www.DeepL.com/Translator (free version)

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