A letter to you, forum

Dear forum, I wanted to write to you. These are my personal views on the situation we all find ourselves in. It’s not an official statement.

In my couple of years living with this condition I have had many ups and downs. I know that for many people, there have been either precious few or no ups. I count myself as one of the fortunate ones in a cohort of exceptionally unfortunate people who did not deserve any of the things that have happened as a result of taking medications and supplements that are approved as safe.

Early on, I was helped immensely by the admins here, both of whom who have been living with this condition longer than I and with worse symptoms. Their kind, helpful replies to my requests made all the difference to me. It is entirely possible that they saved my life, and for that I am extremely grateful to them. Other people who I had messaged here also helped a lot, particularly Scotsman who I think had we met under other circumstances could have been a great friend. As is, he’s a great friend who I mainly email, rather than socialise in person with. There are others too, early on I met with UKguy82, which despite my fears about how vulnerable I would be meeting a stranger from the internet, it turned out to be a very helpful meeting, and an enjoyable one too.

The moderators here don’t get credit for how hard a job moderating a place like this is. When I signed up, I remember frantically looking for something that could help and found great comfort in certain posts, but as I read on, I realised that, cruelly, some people look to exploit and troll communities like ours. There are many people who will happily tell you what you want to hear about how recovery is achievable if you buy the products they are happy to sell you. History suggests that the membership of a site like this wish to believe (I did) and in the event of the products not working, will happily give undue attention to these claims, and will invest ever further, both financially as well as emotionally. They will tie themselves into knots to agree with a statement which doesn’t condemn them, and I can understand that. There are also recommendations which are made in good faith, but history suggests are hazardous. We are aware of suicides as a result of people worsening their condition following taking advice from people on internet forums. It’s quite a task to feel that you are trying to hold back people who wish to exploit your friends and community, at a cost of their lives, potentially. Also, the community itself is often clueless (in the true sense of the word, not a pejorative) about the potential outcomes of recommending and taking substances that previous to their visiting this forum, they had never even heard the name of, let alone know how it may affect us. Taking advice from someone who only appears to know more than you is not ideal.

Early on, I was surprised at how many scientific articles got posted. I myself am much more science literate than most people I meet and yet I have read approximately zero scientific journals. I’ve seen pop science tv shows, heard podcasts by scientists, but these articles are something else. I quickly realised that I would be dramatically out of my depth if I tried to engage with the science of this. I think this is understated very often here. People assume that a plausible theory can be stumbled upon, but I think we should get real on that. On the subject of those who are certain the answer can be stumbled upon, or just thought through in essentially layman’s terms, I will say that at one point during my membership here I saw what I thought was an extremely knowledgeable person make a series of arguments supporting his theory. The problem is that all of his arguments were built on a fundamentally incorrect statement. It all seemed quite reasonable to me, until it was explained. At that point, I knew that random people posting on a forum with no previous experience of cutting edge science were not going to read a few journal articles and come up with a solution. Be careful who you put your faith in.

I’ve written about this next part recently already. Before joining here, I had no clue about how “science” works. The image I had is probably fairly similar to what many imagine, a scientist tirelessly trying to work out why cancer happens, or how to stop HIV progressing …or pick another worthy cause. They work with passion and a drive to make the world a better place. I think that scientists likely do wish to improve the world, and that if they could, would. The reality is that those things cost cold hard cash. Unimaginable amounts. Far more than we could fundraise here amongst our membership. I have read many times that we need experiments and research happening now. I agree. However, all research is not equal. If I go to 3 scientists, explain what we think the problem is, and would they like to accept our money to research, it’s quite possible that all 3 scientists will take different approaches. If I’m expected to choose one course of action, how do I know which to choose? I don’t have the qualifications or experience. If we spend the community’s money and it turns out that what happens is no good, then I’ve messed up. Money, time, hope gone. That’s why I don’t think the community needs to concern itself with science. If it’s not your field, don’t try and make it your field - unless you’re starting a degree and planning a masters in an especially relatable field. In which case, see you in five years.

Which brings me to fundraising itself. The community is often quite outspoken in how much it donates to the foundation to fund research. The reality is that at current levels, the forum contributes a low single figure percentage of the foundation’s funding. This is because the amount is very small, not because the foundation is a well funded organisation. The word foundation conjurs up big buildings, huge sums of money and many staff. This is not accurate. Having the foundation on our side is great and I appreciate their efforts, but I think the community expects more than is possible from it.

In my opinion, the community needs to work out what it thinks the future should be. The options I suggest are to actually further our cause or to continue as we are, repeating the same loop and arguments forever. Every single time someone posts “this might help” and links to a health food shop, we get further away from reality. Guessing that something might help and suggesting that it’s worth a try is worse than saying nothing. I am quite comfortable saying that anything for sale in a health food shop today will not cure you of this condition. If it could, the past decade of experimentation and posts by thousands of people here would have seen some sort of emerging trend, and we’d have more replicable successes. There is no trend, that’s why I can say these things do not work.

A number of people say that being negative is not helpful. Being unduly positive or optimistic about things which do not work is worse. As long as we perpetuate the idea that you can fix yourself through self experimentation (normally using substances that have repeatedly failed with others) we postpone actually dealing with this problem.

So how to do that? Firstly, nobody’s coming to save you. I’ve already explained that the foundation is ill equipped to do this. Secondly, I’ve explained why you can’t do the science. You don’t know what you’re doing. Thirdly, you will not stumble across a magic combination of health food products. So forget all of that. Leave the things that you can’t do to people who can.

I’ll leave you to think about what a person with no scientific skills can do to help a scientific problem which has zero media presence and is underfunded. If your answer is “someone should…” then you have failed.

I implore you to think seriously about this. Nobody is coming to save you and you cannot directly save yourself. If people could get onboard with that, the future will likely be much brighter than it currently is.

15 Likes

Okay I read your long post, but what do you want us to do then? Just donate more money to the foundation so we can have more studies and hope some cure comes out of these studies?

I also find your post very negative and don’t agree with it. Yes we are right about being on our own, but more studies won’t help us, atleast not in the coming years/decade(s). I’m not saying these studies shouldn’t be done, but putting your hope in these new studies coming up with some magical cure is foolish imo.

We need to get better by testing things ourselves and many did recover doing this, nobody recovered yet from a study about fina sadly.

2 Likes

Okay I read your long post, but what do you want us to do then? Just donate more money to the foundation so we can have more studies and hope some cure comes out of these studies?
I also find your post very negative and don’t agree with it. Yes we are right about being on our own, but more studies won’t help us, atleast not in the coming years/decade(s). I’m not saying these studies shouldn’t be done, but putting your hope in these new studies coming up with some magical cure is foolish imo.
We need to get better by testing things ourselves and many did recover doing this, nobody recovered yet from a study about fina sadly.

I was amazed by your intelligence. Are we alchemists?

I’d like you to think realistically. Though you say you have read the post, your reply reads like you haven’t. You need not put words into my mouth about what I’ve said.

As I mentioned, this is something which has not been replicably successful. As a result you can draw the conclusion that it is not going to help, if it had we’d have more successes. As I said, it’s my view that people who persist in promoting treating themselves stop us from getting to a point where we can actually improve our position.

Yes, I said that people think it’s negative to not believe in being able to cure their serious health condition with products available in a health shop.

Beyond parody.

1 Like

When you say “further the cause or remain as we are stuck in a loop” …what do you have in mind precisely for furthering the cause - Is it to have more doctors on board and promoting the cause in general , more research in the pipeline , more media coverage and awareness raised etc

What I get from the majority of your post is that you are anti health supplements and people sharing their stories on things that helped and this is creating the endless loop which I agree with you can be an issue here .
You can go back to posts on here from 2007 - 13 years ago and people are still posting the same ideas and questions today as they were then , there doesn’t feel like much progress at all in nearly 15 years .
The way I see it though - finasteride has a basic umbrella of symptoms in general but it seems to affect everyone differently . Some are purely sexual sides, some get brain fog , other people have the Insomnia and severe sleep issues , some have skin changes , tinnitus etc. the list goes on.
In the same way finasteride affects us all differently perhaps the same can be said for supplements and medications . I know the thing you credit the most to your improvement is by letting the body heal naturally through time and avoiding any supplements or minerals etc That’s great that it helped you and on a personal note here that’s what I’m currently doing going forward - just letting time do the work and letting the body recover naturally.

perhaps though a supplement that does nothing for one person here actually does something for another and that’s why I feel the forum is useful for this purpose . If L Arginine helps someone’s erections compared to a placebo then great . If Remeron takes the edge off someone’s anxiety and helps them sleep great .
We need a place to share results , prognosis and a place to encourage and offer advice .

1 Like

Yes I have read your post but didn’t understand what you wanted us to do, hence me asking. But it seems you want us to think “realistically” then. Well that’s what I did and waiting for studies to come up with a cure is unrealistic in my opinion, alteast in the coming years/decade(s).

Who is promoting anything here? People try to recreate things that helped other people to recover, that’s it. Nobody here is selling or promoting anything so far I’ve seen. (maybe CDnuts be he is long gone)

And you say:

Again how? Funding studies then? But how does that improve our situation now?

It’s quite detrimental in ones healing process/life to be negative. Some herbs helped people here, of course it won’t be enough for some. One thing’s for certain, the last thing we need is more negativity.

The real parody is thinking studies from X will come and give us the magical cure we have all been waiting for.

So far all the studies that came out brought us what? Nothing. You really think the next studies will come up with the answer?

So you say to think “realistically” right.

Scenario 1: Pray a study comes out with a cure, in the best case we’re talking about 10+ years. Probably even longer, especially if you know how slow the medical world is.

Scenario 2: Keep on trying new things to get better like many others did that recovered. And sure it could be possible that you never recover but atleast your tried instead of just waiting and seeing your life fly by.

2 Likes

Regardless of Baylor dropping next month or not

We need to evolve into a fundraising machine

My outreach has barely started to companies and private investors

The first 6-18 months they will say no. But I will keep in touch. I will build a relationship, and I will systematically continue to reach out and fine tune a process until we hit a gold mine, and then refine that process to get consistent funding, like we are a professional organization.

That’s what we need

If Baylor drops, it makes everything much easier

Anyways, just my thoughts. This is extremely hard, so I don’t expect people to do this. I’m working on it though

4 Likes

Das, I don’t want to get into an argument with you, despite your best efforts. I have written up my thoughts honestly and think that our positions are perfect illustrations of what I think is going wrong here.

There is scant evidence that the home experimentation has done much for anyone that time hasn’t. Neither of us have stats, but I think doing nothing has at least as high a success rate as doing random experiments on oneself and has the advantage of not making people’s condition worsen. The idea that everyone responds favourably to one random substance from a potential list of millions is more a “magical cure” than anything you’re claiming I’ve written.

As I have said repeatedly, my preference would be that people think about what they’re doing here. What the outcomes will be from endlessly repeating the same failed experiments of the past. What isn’t helping.

1 Like

I agree with @Greek.
I have been on this forum like 3 years now and I see some things rotate over and over again.
Things like wellbutin etc…
I mean that stuff has been done so many times I don’t understand why people don’t realize that that stuff doesn’t work.
On the other hand I also agree with @Forwardsnotbackwards.
There might be something that someone accidentaly stumbles upon and it might be ‘‘the cure’’.
Saying that I don’t think it’s gonna be some herb or amino acid, it’s likely going to be something strong on a chemical compound level like finasteride.
But to know what that is we need more studies, and for studies we need money.
So I think hat the best way forward is to donate and visit as many doctors as possible (to convince them we have a problem).

3 Likes

The honest way to solve our condition is to urge the medical community to change its perception.

But I also understand people’s minds. Time is finite and youth is especially so.

4 Likes

I have been here for eight years now and have read old posts back to the origin of this forum in a desperate attempt to find treatment. It always ends the same. Somebody claims to have “recovered” and announces his “protocol”. People jump on it. Some add some word salad that the call “theory” to explain the recovery. People repeat the “protocol”. Sometimes some body claim “improvements” (potentially from placebo). Sooner or later people realize nobody else has recovered. Sometimes even the original poster comes back and is not recovered at all. In the meantime, a new “recovery” is announced and everybody jumps on the next bandwagon. It has been going on since the inception of this forum.

Of course, all these “recoveries” have no common pattern. They are random. One may even think that the “protocol” or the “supplements” do not have anything to do with it ;-). Personally, I think most “recoveries” are natural. They often involve people will mild symptoms who have not been suffering for very long. The rest are probably fake, tolls or scams. I cannot rule out that some fortunate souls may get lucky with treatment affecting androgenic signaling. We know that both androgenic and antiandrogenic substances can modulate symptomatoly. But this is very dangerous and we have lost people to suicide who went down this road.

That’s why we need to understand this condition better. People like @Das always try to paint this as a black and white picture. Cure by experimenting or cure by science. But even to try things oneself, it helps to understand this condition better. It could help us to narrow down substances that may provide a cure or at least therapeutic relief. And results from experiments may inform the science going forward. For instance, the idea that some sort of androgen insensitivity is at play came up, because people did not respond to things like TRT, including people who were strong responders before PFS and were able to assess their response before/after.

That’s why I am not categorically against experimenting. But currently people are experimenting with the same things that have been tried for over a decade, while we have gaping holes in our understanding of the condition. Clearly, there is a dis-balance here.

9 Likes

Thanks Greek for taking the time to write this and also for your honesty. I agree that herbs and supplements are bad news I am one of the many who have found this to be true at great personal cost to my health. However I was on the trial and error wagon even before I found out I had PFS… Healing naturally remains my hope. I do believe that more media coverage is what we need. Scientific papers could help give leverage as without, we can be still seen as a bunch of hypechondriacs. I am also very grateful to you @Greek and one or two others who have pulled me back from the brink on a few occasions. Without stumbling across the forum over 2 years ago I doubt very much that I’d still be here. I seriously thought I was going insane. For that reason the forum does add value. It saved my life. While I’m in this world there remains hope.

6 Likes

Number of diseases that are solved by using supplements: 0

Number of diseases that are solved by researching a condition, understanding it, and developing therapies based on that understanding: >0

Jokes aside, if people want to experiment on themselves, that’s up to them. I’m not denying that for some people, some degree of improvement or symptomatic relief is possible through supplementation/lifestyle changes/medication. This is an undeniable fact. But it is not a fix. The degree to which it works varies from person to person, what helps one person harms another, etc.

So what is the ideal solution? Pursuing research, having a better understanding of this condition, so that we can develop therapies. And while we’re waiting for those therapies to develop, since we have a better understanding of this condition, experimentation won’t have to be so blind and random.

5 Likes

I agree with your thoughts. In my opinion there has not been one serious case that has recovered. There are no legitimate recovery stories of a serious PFS case. There are however a lot of scammers that pretend like they have had PFS and recovered in order to sell supplements. This fraudulent behavior is rampant in all communities suffering from chronic, untreatable diseases. There are also people who are so desperate to recover that they delude themselves into thinking that they are recovering even though they are not.

The best thing are donations to the foundation. If Baylor really does reveal what was speculated here recently, it is a real step forward. Let’s continue on that path.

Will it cure us quickly? No. But it’s the only chance we got.

But the truth is also, that too many people are too delusional to see the truth of what the OP wrote. They would rather believe in fairy tales.

8 Likes

The problem is, this forum and pfs has been for more than a decade and we still don’t know what the fuck pfs is and what is the actual mechanism behind it, turning people hopeless. Almost 15-20 years of pfs and more than a decade of donations, still nothing. We have not been able to even generate enough awareness about this poison among doctors. These cruel doctors prescribed me propecia in 2020, but still i didn’t knew pfs even exists even after the existence of pfs since 20 years.

2 Likes

You can still do the survey along with doing self experiments.

2 Likes

@FinDestroyedMe, I’m with you. This isn’t working. So we need to think about what about our current system (if we can call it that) is worth continuing with and what we should be doing instead.

1 Like

I agree with @pvdl I think Khera will deliver the reason “why” these symptoms happen…Whether folks accept that result is another entity entirely.

3 Likes

to say there have been no recoveries is simply not true, and is not helpful. The one thing we have left is hope, and ultra negativity does not help

There are loads of recovery stories on this site, at least 100+

I know this cos I have read the entire forum. I have also spoken to these ppl personally, they had similar symptoms to myself and they all resolved…so I know for a fact they are not “scammers”. Also factor in the amount of ppl that dont bother to report back once recovered and it’s probably a multiple of the 100 number above

Re supplements, certainly no silver bullet but they definitely provide symptomatic relief which is surely a positive

7 Likes

There are a lot of people on this forum with the potential to create a lot of public awareness. Awareness leads to scientific interest and research. I think this has been underutilized.

Drugs and/or supplements are not going to cure people, but they can make life a lot better. I would have been dead a long time ago without my “emergency” meds.