Article Posted About PFS by VICE

[Rid]

Not sure if anyone saw this article from vice, but I think it's important for the community:

The Medical Mystery Behind America's Best-Selling Hair-loss Drug

It talks about the men who have commited suicide from PFS and the 1,400+ that are bringing merck to court.

It's really awful that so many have fallen from this illness and how many of us continue to suffer. I know that this is the hardest thing most of us have and probably ever will go through in life, but I'm also a bit relieved that this is finally getting some much needed attention.

As shitty as PFS is, the complete lack of awareness, acknowledgement and even the straight rejection of it's existence has been very challenging as well.

I've definitely been in a haze this last year and a half after my first crash, some days I would question if I'm really just going crazy or if it's all in my head like I was told. but now that things are looking up, It's easier to see this thing for what it is. We can't get our time back, but we can get better and raise awareness so that others don't have to go through this alone. Good luck guys and girls, hang in there. We're all gonna get through this thing, no matter what weird sickness you have here

edit: wasn't as recent as I thought, but still relevant.

 

[MNK99]

I saw that, it's pretty good. It's absolutely horrible what happened to Eric Rodriguez. I think I saw it pre fin use too, but obviously I forgot/ignored it. Its from 2016. It should have raised more of an uproar.

Then you see idiots who write things like this:
Calm Down: Propecia Probably Isn't Causing Your Erectile Dysfunction

The Atlantic... I only post this to show that good work by honest journalists, (docs and other experts too) are discredited by so-called "experts" like these. The Atlantic's a rag anyways.

 

[Rid]

damn that's disheartening... my computer told me it was more recent for some reason. thanks for the correction.

I expect it to be quite a struggle to get more mainstream acceptance until we can really narrow down the underlying causes and issues going on. I see the point the guy's making, even though his words can be dangerous to the few who are susceptible (like us.) fin sides have definitely stirred up a frenzy when some people simply won't suffer from them the same. hell if I could get my hair loss under control without sides from fin, I'd probably be hesitant to believe my magic pill is causing problems for people when I got such good results.

but i'm on the other side of the fence here and people have gotta be pretty open and understanding if they're gonna believe us, not to mention, the whole nutcase argument made against us won't be easily delegitimized if we approach the situation with hostility.

I just keep reminding myself that it's people being ignorant, not hurtful, when they try to tell us that it's "in our heads," hard as that may be haha.

 

[Canari]

I just keep reminding myself that it's people being ignorant, not hurtful, when they try to tell us that it's "in our heads," hard as that may be haha.

Tell them your head is also in your body...

Whatever the size or form of the agressor, it hurts, that's all! Suffering is a consequence, not a cause!

Target more the labs than doctors.... but also you need awareness from users. I have read it! Some users are happy with the drugs, and say "fu** off the others, if you are not you-name-it enough to handle it, let us have it"!
If not much % get post syndrom, then you are just considered as the risk factor, as the sacrificed ones.... and the ones who profit of the treatment, for how long without side effect, are the selfish ones as much as labs. I hae read this in a forum, read the warnings, and read the answers of happy users...

 

[Rid]

Tell them your head is also in your body...

Whatever the size or form of the agressor, it hurts, that's all! Suffering is a consequence, not a cause!

Target more the labs than doctors.... but also you need awareness from users. I have read it! Some users are happy with the drugs, and say "fu** off the others, if you are not you-name-it enough to handle it, let us have it"!
If not much % get post syndrom, then you are just considered as the risk factor, as the sacrificed ones.... and the ones who profit of the treatment, for how long without side effect, are the selfish ones as much as labs. I hae read this in a forum, read the warnings, and read the answers of happy users...

my head is in my body. I love that.

we sacrifice it all so others can get their hair, heh.

well I'm happy you're understanding even though you're not dealing with PFS, Canari.

 

[bruschi11]

LOL if its in my head how did my genitals shrink and then magically grow back?

Did the ruler change sizes? Did my eyes go? Why were my nuts stuck to my body with no avail? Sorry for graphicness, but the "in your head' by modern society thinking is just so abysmal that those who promote this literally should be castrated for life.

I'm not even a negative guy here and most of you know that who have read my stuff. I'm glass half full, very optimistic, I know I'm going to get better. But realistically, there are some people who spoke down to me in this past year who if I were to see again, I don't know how I wouldn't stop myself from absolutely beating the shit out of them.

Telling someone "its in your head" literally deserves worst of the worst punishments. Jail should be one of them. Not fair to myself and so many young people who have had to deal with these symptoms. Instead we see these "doctors" wearing thousand dollar suits walking around mental institutions telling people that this little pill is going to fix them and they go home to million dollar houses.

Insanity. Someone has to pay for this bullshit.

 

[Canari]

Well I might have a few things from Lyme giving me a few symptoms...
But yes, I understand because what matters is not the story, it is what is experienced even though the event is past. You are off the stressor, the drug, the agression or whatever, but it lingers. It sticks like the sticking plaster you remove from one hand just to stick to other fingers...

I am also a half full glass person, and also make fun of what is not funny, just because it is good for us!
Today I was talking with friends about the "in your head" belief, which is indeed a crime! But those criminals have circumstances, they feel so helpless to not be able to help that they have the automatic fuses jump off, so they have to be forgiven, and got their mouth taped with the best glue too!
I know people who could angryly say "who thought it was in my head?" when they were finally diagnosed with their real issue.

 

[joekool]

Decent read and upsetting to hear again, of the suicides... We will have a cure this year. So much done in 3 months... We'll get this

 

[Rid]

Well I might have a few things from Lyme giving me a few symptoms...
But yes, I understand because what matters is not the story, it is what is experienced even though the event is past. You are off the stressor, the drug, the agression or whatever, but it lingers. It sticks like the sticking plaster you remove from one hand just to stick to other fingers...

I am also a half full glass person, and also make fun of what is not funny, just because it is good for us!
Today I was talking with friends about the "in your head" belief, which is indeed a crime! But those criminals have circumstances, they feel so helpless to not be able to help that they have the automatic fuses jump off, so they have to be forgiven, and got their mouth taped with the best glue too!
I know people who could angryly say "who thought it was in my head?" when they were finally diagnosed with their real issue.

Apologies, didn't mean to sound like I said you weren't free from your struggle canari, I think just about everyone here has an "invisible illness" or at least an illness that isn't yet understood by western medicine (therefore it doesn't exist in their books, fuckers.) PFS, CFS, PSSD, PAS, etc, we're all working on something with similar symptoms that are all similarly misunderstood and unfairly interpreted.

It sucks when people feel they have any right to tell us what's wrong with us, it's natural for them to believe that it's a mental issue because it's easier than accepting that there are simply things we don't have a full explanation for, especially when the issue can be a deep imbalance like we suspect is wrong with most of us in some way.

And it's just as natural for us who deal with these symptoms to get pissed off. But we gotta understand that it won't further our cause when we let our emotions take over, hard as that is sometimes.

But I mean, until we have to have that discussion publicly, fuck those people lol

 

[Canari]

Apologies, didn't mean to sound like I said you weren't free from your struggle canari,

Well I apologize too for making it sound like this (that's writing...), as it was not the case, but you are right for sharing what you thought, that was more a to the topic mentioning common points between lyme and pfs! Was just humbly saying it is not so difficult for me to understand others.

Mental issues are less than what we think. Even vets are in a new tendency of missing diseases and tell that a dog's behaviour is from some bad training! Then the truth is that the dog is aggressive or shut-down just because he has pain! I remember a vet warning of this in a talk... And few things are mental as meaning "in the head". They start to say we have a brain in our heart, in our gut, and just saw an article about a brain in our skin.... They just forget to say this is the same brain, and that it is already known and has a name, the ANS or autonomic nervous system. And as you know from body suffering, its lenguage is body feeling. Some have coined the term "embodyment of emotions", but it is actually the reverse... how can you say emotioniment of body sensations?

NERVOUS ISSUES ARE NEVER A CAUSE, THEY ARE A CONSEQUENCE.

Then of course there is a loop and the consequence become a cause etc but in the hen and egg dilemma, I can assure you I have zero doubts. Even when you directly have a nasty thougth or emotion first, it is actually because a body memory has been triggered! A mistery illness is physical but feels as an aggression to the body when it lasts too long. Then it sends signals that the emotional part of us feels and share, which triggers the mind to think in a defensive way. Then we are no more very nice people to others (just look at your face in the mirror when you feel bad...), and they do not understand they have to treat people who are in difficulty with the same kindness or at least respect, as sitting aside a bedridden person. No excess of care, no worry, no fear, just normal friendly presence but with calm and no intensity.

 

[Canari]

The original warning label acknowledged that "some men may notice changes in their sex lives." Because enlarged prostate is a serious condition—it can cause incontinence and infection and, in certain cases, kidney damage—urologists viewed the risk as a reasonable one. Sales boomed.

Exactly what I pointed in another thread, and this is the problem in medicine...

Good point there... We are made to think medicine can do more than what it can.

"minoxidil (Rogaine) was the only FDA product on the market to remedy hair loss, and it had to be applied twice a day, leaving hair looking greasy. Surgical hair restoration was expensive. Young, balding men were clamoring for a solution. So Merck gave them finasteride in the form of Propecia.

"It was a big deal," says Shani Francis, director of the Hair Disorders Center of Excellence at University of Chicago. "For a lot of young guys, hair loss can be really devastating and here you had a discreet pill that you only had to take once a day and no one would have to know."

Here the lab has it bad...

The label also warned that, as clinical trials had shown, about 1 percent of men might experience low libido or erectile dysfunction. But, the label offered—in a line that turns out not to be true for everyone—"these side effects went away in men who stopped taking Propecia."

Will one day science know enough to make safe drugs?

It suggests the enzyme that Propecia shuts down—5-alpha-reductase—does a lot more than convert testosterone to the hair-killing dihydrotestosterone (DHT). It also converts hormones like cortisol and progesterone into "neurosteroids" that play key roles in the brain.

"Blocking 5 alpha-reductase to any degree in the brain is a crapshoot," says Alan Jacobs, a New York–based neuroendocrinologist. "Theoretically, you are going to block the production of hormones that serve very important behavioral purposes."

So my question: why most people manage to not crash? That would be interesting to know....

 

[Canari]

"many of the men who suffer from the syndrome have family or personal histories of emotional disorders, such as anxiety.
For now, he advises dermatologists to never prescribe finasteride to a man who suffers from depression and anxiety."

This is exactly what I thought. No proof so I did not say it, but just insisted over and over again on the importance of regulating the autonomic nervous system.
But I clearly mention that I do not believe the rest he says around this, and also that family or personal problems affecting the nervous system go way beyond anxiety. So even if you were not anxious, you could have a damage to the resilience of your system, you can call it a reduced elasticity, and it goes unnoticed.

They just also do not take into account that families transmit nervous patterns by other means than genetics! So I just disagree this could be mainly genetic, as it is more and more said that genetics are about what allows or not genes expression. Babies are regulated by their parents' nervous system until the age of 6 months old, and this is what makes us develop a good nervous system with resilience.

Don't forget that the current medical view of the nervous system is also polluted by the belief in drugs to fix it!