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General Discussion
#1

It can’t go on like this.

Enough.

It is time to take the initiative into your own hands.

What do we have at the moment?
We are in a very difficult situation. All of us. Who suffers from side effects.

I do not know what to say to you. We are in hell, gentlemen
Believe me, we can put up with it. And then we will remain sick for a long time. Or we will give a fight and then we will break free.

I urge you all to take active action and propose methods of fighting. What are they? Read through to the end.

First of all, many of you have not even passed the online survey, which is here on the site.
I have one question. Are you all right? I’m sorry, but it’s very important - this data will then be used for research for scientists. You have to respect yourself enough.

Only one institute around the world is studying this problem and it is located in Italy.
I don’t know what is going on with Baylor’s research. Maybe they found something, maybe not.

Stop hoping for someone or a miracle.

It is not enough to write something on the forum to get to know us.

We need new tools to fight.

We need to be recognized.

We cannot expect the problem to be solved by itself.

I want you to listen to me.

Chapter 1

1.Go online for the survey. - is must have. It is simply necessary for the progress of science.
2. Order a DNA test by paying 100 bucks for it (23andme) It is very important that we do the test.
3. trying to convince the others to take the survey on the forum.

Chapter 2

1.Try to find journalists who can publish your story or just information about the finasteride and its consequences.
We need to think here and now how to write to journalists in the countries where we are located.
And who of the knowledgeable, authoritative people we can bring to our side so that they can help us spread the word about us and our disease.

2.Association:
Example:
I have a friend here at the forum who lives in France and you know what? The French association knows about the disease and has even given tests to detect it. Perhaps we should ask her to send letters on her behalf to as many urologists, endocrinologists, andrologists as possible. The Association of Physicians of Scientists - this is already serious, you should agree.

  1. We need advice from public relations specialists. We need to learn how to wage an information war against the ignorance of people - we should not be considered a bunch of crazy people. (Marketers, publicists, advertisers, etc.).
  2. We need to share our experiences here - and think about who can take our side.
    5.The idea of running a YouTube channel is becoming more and more attractive to me.

Doctors, media, mass media and other organizations don’t know about us - they just don’t know what happens.
We need a whole company to promote our condition - Germany, Italy, England, France, America.

Chapter 3

1.Do classical tests with endocrinologist, urologist and psychiatrist.

  1. After there is enough information about us on the Internet and we are at least not rejected by doctors, we can ask for medical tests based on the latest research (Baylor, Mellanie, Harvard). We are entitled to them because we are sick!

  2. Spinal fluid tests, DNA tests (gene methylation). And all other tests are the latest MRI tests, for example.

  3. And finally, on the basis of the data, collect the material for all of us and sue Merck.
    We should have tests that will give us grounds to sue in the end.

Finasteride should not be prescribed for hair loss. He should disappear from the market in this form

But the most important goal is to attract teams of scientists from all over the world who we can. So that as much research as possible and as soon as possible cure from this crap… THIS IS THE MAIN GOAL.

You know, I’ve even been to an endocrinologist and urologist in Berlin. They all told me one thing - you need to see a psychiatrist.

I haven’t been to the psychiatrist yet.
When I was 24 years old and my hair started to fall out. I started taking finasteride for 3-4 months and the finasteride stopped falling out. If all the doctors send me to the psychiatrist and the psychiatrist prescribes antidepressants to restore my sexual function.
I have problems with my libido, erection, potency - what is it about depression?
Then why did the hair loss stop, I got fat on the female type and my stomach grew bigger.
Why did my breasts get bigger
Why do I have a pale penis
Why does it feel like my dick is just separate from me?
Why has the amount of semen decreased?
**Can it be because of depression? Do doctors think I’m an idiot? **
If I’m not mistaken, depression does not cause such symptoms.

SHUTTERS
Write your comments, ideas and criticisms. We need to discuss this together.

We will either win as a team or die alone. I’m afraid for my future and the future of other people who will be in this situation.

I wish you good luck!

With respect Roman Kulikov is a pfs member of the forum.

6 Likes
#2

I think there are a couple of things we can do that will have a high rate of return for the community.

One of them is to write a long and authoritative article on PFS for the popular press. I have tentatively started working on that with another forum member. The article can also be turned into a full-feature documentary.

The problem is I am very unproductive and have a hard time concentrating, plus I have a lot of other work (that I am not doing). I can’t say if and when it will get done. If we can convince a top level journalist to do it - say someone like Dan Levine from Reuters - that might be better.

The second thing is raising money for rat studies that can be done relatively cheaply at universities in low cost destinations. I think we need to start testing treatment protocols with rats. I have written about this many times before but to no avail.

I also think we need to forget about Baylor. We need to try to recreate the study on our own as soon as possible. We don’t need to have as many participants but we need to get the right participants. The results may not be convincing to the world but will give us information what genes are affected so that we know how to design future studies.

All of this requires that we are much better organized as a community.

7 Likes
#3

If we could get research facilities to try treatment options based on the literature then I’d be one of the first to volunteer, this method was also used for people who had aids back when they had no treatment. I came across this website a while back that promising.

2 Likes
#5

the link doesn’t work. Can you share it again?

#6

Hello Airforlife, as you sites Association AVFIN, I allow myself to answer you. We try to send a maximum of emails to different specialists and researchers but it is not enough … And you’re right, everyone must feel totally involved and can help despite their questions, fatigue, …
I think I’ll do a post very soon here because it’s time to move!

1 Like
#8

I’m scared. I’m afraid that years will pass and we’ll stay sick and no one needs us.

We have a responsibility to stand together and act together.

If you have ideas or experience about how doctors and other information react, we can work on that.

4 Likes
#9

You motivated me to do a little post with some tracks within reach of all. I understand your fears, but I know that consciences are awakening, things are moving, I see it here. We must not forget that the history of PFS is relatively recent …

2 Likes
#10

One of the things I’ve noticed on this forum, and this isn’t an attack on anyone, including you @Sibelio, is that there are plenty of posts that say “this is what you/I should do” and not much “this is what I’ve done”

In all honesty, if you don’t think you can get it done, then instead you should aim to do something you can.

Your suggestion that writing an article is a good idea, isn’t a bad one but it might be better to work to amplify articles that have already been written.

@pursuit_of_happiness wrote an excellent article a while back. Perhaps you could share it with some people. That is as difficult as writing a tweet, Facebook update, email or forum post and is significantly easier than writing a whole new article, especially as you aren’t a journalist - which @pursuit_of_happiness is. It might be better to leave certain jobs to people who have a specific set of skills and take other jobs on instead.

It’s better to build on foundations than to start new ones every day.

If you want a plan of action here’s what you can do:

Every day send a single tweet, write an email or Facebook status sharing a PFS article, news report or one of our own blog posts here.

That will take you 5 minutes.

Pledge five minutes a day.

2 Likes
#11

No, it is not. What’s coming up is part 1 which will have no results from the gene expression analysis, as far as I know.

1 Like
#12

How do you know part 1 is coming out in october? Interested since it’s constant speculation to this point.

1 Like
#13

I find out this from a friend who’s a member of the French Association of Doctors.

3 Likes
#14

Allright hope it´s true, would be great, thanks

1 Like
#15

can you ask him if the genes affected is in the part thats coming out first?

1 Like
#17

No, you don’t understand me at all. I am very sorry.

#20

@airforlife @Al9000

First, go into the forum settings and make sure you have have chosen your language.

If you do this, the forum will translate for you. It will detect when posts are not in your language, when that happens a button that looks like a globe will appear. Click that and the translation will be done.

You can post in your own language and the forum will translate for people who want to read what you’re saying.

2 Likes
#23

can you please take the survey as you wait for airforlife to respond?

1 Like
#27

You have bad English.

I said I feel like I don’t have a DEPRESSION at ALL: I feel my self okey.

I love music, movies…

Nature. weather.

I love to learn German.

It can hardly be called depression.