A letter to you, forum

General Discussion
#42

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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#43

For the record, if I’m ever to be rich I will donate millions and fund the studies personally.

#44

Hi @orthogs, I feel that you’ve somewhat missed my point(s). The fundamental point I was making is that this isn’t working. Not for me, not for you, not for most people here. Propping up or continuing with the status quo is not helpful or desirable imo. Please stop again and think about what the long term successes have been these past ten-fifteen years and ask yourself, should we continue with the same course of action. Do you expect better results doing the same things? Why?

This forum seems to prioritise the recoveries of a fraction of a percent of it’s membership and wishes to ignore the experience of 99.9% of people that the current forum preference for self experimentation does not help. And those people who it is not helping seem to be fighting to maintain the status quo because of various fallacies which have become ingrained here.

“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.”

That’s not correct. You can’t do the science and you don’t have the money to fund the science, home experimenting does not work and might make you kill yourself.

So what can you do instead?

This is what the community should be asking itself in my opinion. There are more ways to approach this than hoping to get lucky with a special diet or to become leading scientists in the field of molecular biology or becoming fabulously wealthy and paying for someone else to do it. Buy a lottery ticket if you like, but the odds are so stacked against you that you wouldn’t consider it an investment.

People are waiting for the foundation to do the work for them. The Foundation is a single room in an office block with one employee as far as I know. You can criticise that foundation if you like, I don’t care. But you can’t really do that when the criticism is essentially that they don’t have enough resources.

I’m not picking on you, but your argument is, as I mentioned in my opening post “Somebody should…” and not “I will….” The entire forum needs to wake up to the fact that the foundation doesn’t have the money and the membership here doesn’t give them any (in any meaningful way), what’s more the numbers are probably too big for us to buy the research we want. I’m not telling you to donate or not to, but be realistic about the effect of giving them $10, $100, or $1000. Be realistic about how much funding is required and how likely that is to be achieved by individuals.

Asking the foundation to be held to account or to regularly schedule meetings with us is so far away from the way you need to think about this, we’re not entitled to demand anything just because the (probably non existant) sign says “post finasteride” on it. This is still “someone else needs to do something” not “I will do something”

What can you do if the options don’t include develop your own cure? How else can we get there?

I’m not going to get too in-depth with my response to your ideas about scientific understanding because I’ve already laid it out in my opening post. I will reiterate that unless you have studied that degree and completed your masters, don’t bother with it. We’re at a point where people post up any nonsense they feel like and the forum will applaud because they have no idea if that hypothesis is even a possibility. Use your time and effort wisely. Be realistic about the complexity of the task and the suitability of average people working on it. Use facts, not emotions and idealism.

You have to get past these ways of thinking about the situation.

You cannot buy your way out, you can’t understand the science and nobody else is coming to save you. What are you going to do? I’m not telling you to accept anything. What are you going to do? That’s what this conversation needs to be.

2 Likes
#45

The dialogue is “you can heal yourself with asparagus”. The dialogue needs to change.

As I said in my opening post, every time someone says that they think something in a health food shop will help, we get further away from reality and put off dealing with this problem properly.

It’s cruel and unkind to give people false hope and stops us getting to a place where we can actually make a difference.

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#46

One of the major concerns of our community is perhaps linked to the extreme difficulty of communication.
Whether we agree on the protocols, on the percentage of recovery or not should not prevent us from moving forward. We are all in the same boat and must have the same interests! Concretely, what do you propose?

#47

You specifically mentioned the hundreds of people. And I see this mentioned again and again on this forum. “I’m pretty sure we could get 500 pfs people to donate $1,000 pretty easily…” (Is there a way for take gene therapy). It’s far from the reality, unfortunately. Of course, 20 people could be enough if they offer sizable donations. The Foundation knows a few bigger donors who have financed most of the activities so far, but their pockets are not infinite. Other than that, where are these people? We have repeatedly asked people to come forward to us who are able and willing to offer sizable donations, but they never come forward.

Again: If you are reading this and are both able and willing to make big donations (e.g. well within 5 digits) in order to finance scientific investigations of this problem, please contact the staff.

What Melcangi does (e.g. his calls) is irrelevant. He leads a relatively small operation and is clearly attached to this condition. But he is an outlier. Knowing a bit about outreach efforts to scientists, most of them won’t even speak to us. We are talking about directors of large biological centres. These are busy people who have never heard about our problem before, do not normally engage with people outside the scientific communities and have to be convinced that this condition is worth investigating next to their research in prostate cancer, for example. Do you know how insanely difficult this is? Now go tell the few scientists who are even willing to speak to us to have calls with some anonymous forum members who will ask them weird questions about semen volume, their opinion on the CDnuts protocol and alternative health bullshit. Sorry, not going to happen.Like I said, the level of expectation is so far off from the level of contribution. When this community donates millions, we can make those demands.

What we would like to do has been mentioned several times before:

Axolotl: Found a huge fund for research on endocrine disruptors
We obviously don’t dictate research - unless we come into several million dollars. I can only tell you what we would very much like to achieve as an organisation: Collaboration with a leading molecular biologist to undertake genomic research of patients per their design. We would very, very much urge the inclusion of a secondary patient cohort (likely smaller for practical availability reasons) who are suffering an ostensibly similar syndrome after serotonergic antidepressants and isotretinoin.

Axolotl: Propeciahelp: An update on site efforts
At the end of last year we began efforts to gather the interest of scientists with appropriate expertise working with cutting edge technologies. We have been in discussions with scientists in a couple of leading centres to propose, design and (with appropriate fundraising) conduct research that would use next-generation sequencing technologies to hopefully uncover important information about our condition. This would have investigated urgent priorities including the potential for underlying genomic differences in PFS patients that make us variably susceptible to it.

And yes, this costs the kind of money I was talking about. The question is how do we get this money? And the forum community was never a big source of funding. People are more eager to spend money on their next experiment than research, because they hope for the quick fix. 99% have donated nothing, the amount of people who donated more than €1k is small, the amount of people who donated significantly more than that is probably low two if not single digits. We have had road maps and so on before. In fact, in 2012 there was much more hype with Baylor and Harvard coming up, there was a road-map and everyone was optimistic. Yet, donations were scarce and it was hard to even fill the studies with enough participants. That lead to cost cutting measures and eventually delays that have frustrated all of us.

Yes, we have had plenty of new members since then, but many of the original members have moved on as well. While we have made progress, what I wrote about our status in the world is still true. And it amazes me that you think otherwise. Go contact 10 specialist scientists and see how many respond.

Sorry, everybody needs to contribute much more than they have before.

5 Likes
#48

Chicken and egg problem

To move forward we need to change

To change we need to move forward (in some areas)

As far as donations and survey conversion rates go

You guys shouldn’t be surprised

These types of things are generally inefficient

#49

This, I’m thinking about some “go fund me” project. That has more potential.

Btw another issue is transparency, if you want people to donate, they need to know where te money is going and the foundation needs to show it is to be trusted in one way or another.

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#50

This, I’m thinking about some “go fund me” project. That has more potential.

We have an obscure condition that nobody really knows about, we are all largely anonymous, most of us are not dying from this condition. Who is going to donate to this cause? Very few if anybody.

What we need is more awareness of this condition, we need to make people understand the horror of this condition, we need to gather sympathy, we need to put voices and faces on it. Then, people outside this community may donate.

That’s why we have created the YouTube video project and have other ideas lined up to create content that will raise awareness and may support external fundraising. But guess what, only 2 or 3 guys stepped up.

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#51

I’ve repeatedly said that I am not compelling people to donate.

1 Like
#52

If you guys who moderates this site doesn’t want the teurapathic threads and only science, what’s stopping you from deleting them? If this is the approach all of you in charge have, just decide for yourself. It’s not like people here like myself have the power to change it. This thread isn’t a discussion. I’m 34, doesn’t get better, instead worst and was told for years to wait for an upcoming study. So what’s the issue here exactly? Wait for 5-10 years until next one? You guys claiming that no one been cured. That’s an arrogant statement. Your comments isn’t an discussion, it’s a start of a policy change. So do it already.

3 Likes
#53

If you guys who moderates this site doesn’t want the teurapathic threads and only science, what’s stopping you from deleting them?

Nobody said that we don’t want any therapeutic threads and that’s why we do not delete them. We want people to report their experience. What we do not want is people to focus alone on experiments that have failed for 15 years.

So what’s the issue here exactly? Wait for 5-10 years until next one?

The issue is that we do not want to wait. We want to make progress. And we can only make progress, when people stop throwing all their time and money into the next wild goose chase and instead start to support systematic and coordinated efforts to raise awareness and initiate research.

You guys claiming that no one been cured.

Nobody claims that. But the fact is that there is no reliable and safe way to treat this condition. There are just unreliable reports of “cures” that curiously never help anyone else.

Your comments isn’t an discussion, it’s a start of a policy change.

Incorrect.

1 Like
#54

These are my thoughts, as a member of the forum. I thought I was quite clear about that in the first line of the first post.

#55

when people stop throwing all their time and money into the next wild goose chase and instead start to support systematic and coordinated efforts to raise awareness and initiate research.

Dont you think people can raise awereness and trying to get better with teurapethic methods at the same time? I made contact with a doctor in sweden who working on an an article about pfs in a magazine for doctors in Sweden for example. I also manage other pfsvicitms in sweden to get a contact for this doctor.

The fact is that we all waited so long for this study and the transparency was not great at all. I mean what happend? And all banning and ending of threats that criticizing something is very frustrating as well. I understand that you guys want a forum a sertain way but you are no gods either.

Nobody said that we don’t want any therapeutic threads and that’s why we do not delete them. We want people to report their experience

Then why does every teurapathic thread gets spammed with people who advocate your idea everytime with negativity? We all know its a long shot but you guys always writing that its pointless and only science.

1 Like
#56

I don’t think that’s what happens.

#57

These are my thoughts, as a member of the forum. I thought I was quite clear about that in the first line of the first post.

I don’t think that’s what happens.

I find you a bit arrogant and snobbish and everytime someone trying to answer they dont have the understanding of your writing.

Exactly, your just a member of the forum. A member who´s been more fortune than others and thats why it seems like you cant fully understand that someone else, who is worst case than you, needs to get better in different areas. Even if its not a cure

2 Likes
#59

I’m sorry I haven’t made a better impression on you.

Whatever you think of me, I’ve written and answered honestly about this.

I’m not sure how I’ve answered inappropriately to someone who hasn’t understood what I’ve written, but I will look out for it.

You’re wrong to paint me as someone who has no empathy and I think you need to take some time to think about how much time and effort I’ve put into this place before you start accusing me of having no care for people who may have had a worse experience than I have.

It is because I understand the severity of this condition that I don’t think we should continue down the path that we are on.

Investing in snakeoil and fantasy may well placate you but it does not help you longterm.

I’m really surprised by what you’ve said.

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#60

Good on you man. Sending an abstract to some media sources, maybe with a couple personal stories could make a good story

#61

You did this once again. Its remarkable.

Investing in snakeoil and fantasy may well placate you but it does not help you longterm.

So elevate some symptom with this illness its just snakeoil? Thats why i find you a bit arrogant. Everything you doesnt agree with is snakeoil. Everything peopled tried and find relif of is snakeoil to you?

I count myself as one of the fortunate ones in a cohort of exceptionally unfortunate people

You said it yourself. Thats my point why point fingers to people who suffer more than you and reduce everything to snake oil.

It is because I understand the severity of this condition that I don’t think we should continue down the path that we are on.

I myself am much more science literate than most people I meet

This isnt humble at all

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#62

I agree with the mods. That’s the truth.