suicide

Symptoms Neurological
#185

I just dont its very effective for members to invest a lot of time or money in either A) trying to cure themselves by trying out homebrew protocols or B) trying to increase media attention or trying to reduce the (safety) reputation of finasteride.

That A) is not effective has been impressively shown by the last 10 years of unsuccessful attempts of finding a cure on the shelfs of walmart. That B) is not as effective as just plain old donations and a regular job is also probably true, since nobody cares and will care unless you produce concrete scientific evidence that this medication is very dangerous for a subset of users, which you cant.

If you think about it, we dont want the repuation of finasteride safety to be questioned, since then it will just be taken off the market, and any motivation to understand the mechanisms behind finasteride will be eliminated.

#186

can you pls stfu with your “guys dont have hope” attitude ? it really sucks. and its just you trying to look smart. but your posts about this arent smart at all. it just brings nobody further.

6 Likes
#187

when this shit gets taken off we are lucky because more people will get this disease

#188

No, since the attitudes that “we have hope”, “I will cure this by myself” have been terrible for this community. I would rather that we are realistic instead of hopeful, since being hopeful is not going to be the best way to solve this.

#189

So what is your proposal that we take a back seat and allow other young men to end up in similar positions? Once finasteride is taken off the market I can Guarantee you the amount of men being hit with PFS will be unprofound.

#190

Either way, it will not move the needle much if we dont have concrete evidence.

But yes, if your aim is to increase the chances of getting cured, taking finasteride off the market would most likely be harmful because the motivation to understand its mechanisms would be eliminated. Maybe I am wrong on this, but thats would be my assumption.

#191

If there is no hope to get better @pvdl we may as well take a running leap off a mountain top because hope is what keeps people alive. You’ve become hopeless but it shouldn’t mean you project it on others.

We do have concrete evidence from the spinal taps of PFS patients that show altered levels of neurosteroids. What about the Italian guy on here that’s going to get his receptor genes checked to see if there’s any alterations if there is that’s all the proof you need.

2 Likes
#192

That assumes that life is worthless if you have PFS. I think this not true. I am not hopeless that we cant make progress, we can. But from our level of understanding to a cure it will take lots of intermediate steps and intermediate successes.

Is it possible to recover from the syndrome?
Unfortunately, there is no way to “go back” and return one’s body to the state it was in prior to using the drug. “Many studies have been carried out by now, but we still have not succeeded in even precisely defining post-finasteride syndrome. It will take years,” Melcangi adds.

#193

Being hopeless about the situation is eqally as bad, I would say worse. Hopelessness is what drives people to do hopeless things. And there were recoveries so its not right to say that there are not any ways, its just possibly pretty risky with all the possibilities out there which helped people and not easily repeatable for everyone. Its good to point to risks, things can get lot worse mostly with quickfix solutions, but its not accurate to say its all only hopeless out there. Its not right to crush all hope in the name of science of “after many decades”. There should be some balance, truth is its not all a fairytale scenario at all but neither a doomed situation

#194

I think those members who are most “hopeful” are also more likely to believe in a homebrew treatment. Because if you dont believe that you can fix it by yourself, you are left with the scientific route, which will probably mean you are much less “hopeful” that a cure will arrive in a few years.

But those who are less “hopeful” are therefore also more likely to donate to the foundation. Maybe this is untrue, but in any case its better to assess the situation realistically.

I bet only 10% or less of forum members have set up a monthly donation. I have done so, precisely because I am not particularly optimistic, that a homebrew treatment, or miraculous scientific breakthrough will arrive shortly.

Reality is not always very nice.

Ok, whatever, I cant move the needle anyway. I have long suggested that a marker is placed on those people who are donating to the foundation on a monthly basis. But in todays politically correct times it was rejected by the moderators of this site.

1 Like
#195

I see the good goal in Your mind, but the form with which You try to apply it is kind of rough. Like survival of the fittest. Its great that You came to terms with this condition, but unfortunatelly - not everybody did. To someone the talk of science of multiple decades is a reason to flip, trust me, I am in regular direct contact with suicidal sufferers. Please, take into consideration some really weaker sufferers when posting. Also, nobody can tell when will what happen in science and predict dates, so many things run now in parallel so I wouldnt necessarily say its all possible only after decades. Your goal is good, but I would change the tools and methods and with the right approach things can change even in aspect of donations for the better

#196

You never will fully come to terms with it, unless your symptoms are very mild. I think I am moving on while I am in the process of accepting this condition more and more. However I will never fully get rid of a strong sense of regret.

You might be right. However I always found the “If you dont throw a hail marry pass and cure yourself with the help of this protocol your life is over” mantra discouraging. I would have much rather heard that you can continue with your life even with PFS. Of course it wont be the same, but this “your life is over unless my protocol works for you” mantra isnt particularly heart-warming either.

#197

"your life is over unless my protocol works for you” mantra isnt particularly heart-warming either

Noone is saying this and if someone does its simply untrue

#198

Loads of people said this only a few years ago, until some of those people migrated over to other forums.

However the excessive focus on curing this quickly kind of implies it. Its creating a panic, since it puts this idea in your head, that you have to cure yourself or else your life is over. You said it yourself, when you said that if you are not hopeful for a cure you might as well jump off a mountain. :upside_down_face:

If you listen to many members, a lot of people seem to believe this.

#199

I surely did not say that exactly and what I meant was that for -some/many- people lost hope equals to no point in anything, no point in surviving, no point in nothing. Look, its kind of simple (I think/hope :slight_smile: ), when posting something think of everybody out there reading, from a freshly affected teenager to a longterm sufferer. Posts do have impact. Lets let it be already I think as noone can predict future here and good things indeed may happen scientifically in upcoming years. Well, You seem to be energized towards collecting money resources for the Foundation. Any ideas? And lets this time leave the philosophy behind. I personally think that a shortcut to donation would be helpful here on the forum, many people perhaps wanted to donate but its not clearly visible anywhere. Or some friendly motivational ideas how to boost people to take action towards donating? Like badges?

1 Like
#200

Yes I have suggested all of this, but it was not taken up by the moderators or even rejected. I.e. donation banner, a badge on the username if you set up a monthly donation etc.

#201

Well, I am surprised it was rejected. Maybe they plan some action in this sense that we do not currently know about, otherwise I do not understand. Anyway, I think the more ideas the better, keep it up, I am sure something will be done about the donation aspect, its for the good of things and the ability to push studies so its very likely something will be done about it from the Admins/Mods side

#202

I think the issues surrounding donations is that members need to see were the money is going, a monthly update into were resources are going and what future plans they have would motivate everyone to start donating. Transparency

3 Likes
#203

Hold on there. There are some of us who have been pro-active in specific directions and have improved to zero or almost zero symptoms. I know many of them and I’m one myself.

Epigenetic modifications are done by the body itself, in response to outside influences. I believe it’s in our body to reverse it, it has mechanism that can do this.

I made a success story thread to find out what were the commonalities of those recovery. It seems that time, healthy diet, especially very low carbs ones, fasting and exercise once starting to feel better are common things. But also, every one who got better and diid something to improve believed it was possible. Belief is more than hope although hope is at least an opening to believing you will recover.

When you stop hoping, you seal your fate. from what I understand, we can get epigenetic changes from social traumas and those are subject to our attitude toward them. You can only be made ashamed and ridiculed if you have pride to begin with. Humility would prevent that. In my opinion, attitude can improve or decrease your condition so be careful what you wish for.

And what helps in not at walmart. In my opinion it’s at the grocery store.

That being said, we are all free to believe and to think what we want, you included.
But please people don’t let yourself be dragged down by negative attitudes: it leads to the title of this thread.

I wish all of us the best in dealing with this condition.

Ozeph.

2 Likes
#204

I looked at your story thread.

I am not talking about mild cases like yours, where many symptoms disappeared one month after cessation of the drug.You are not a chronic case, since A) many symptoms disappeared within one month after your crash B) after a year you are saying that you have zero symptoms or almost zero symptoms. This is not a chronic PFS case, it is if anything at all a very mild PFS case, where you have basically no symptoms within 12 month. Many people wouldnt even call this PFS at all, as they define PFS as persistent symptoms after 3-12 month period. Of course this is all just a question of how you want to define it.

I know you attribute this to your diet, but that is irrelevant to me, as its the typical correlation causation nonsense, and has been discussed to death. The cliffnotes is, that many people including me and my brother did what you did and had no improvements.

Please don’t lecture those of us who have been hit much harder, how you have been “proactive”. I am happy for your improvements, however many people have been ridiculously proactive and have stayed the same or gotten worse. Thanks for your understanding.

2 Likes