The Citizen Petition requires no signatures. If you read it, you will see that.
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I have told him before I consider his claim to be unsubstantiated but people are allowed to be wrong.
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It reminds me of this “philosophical” debate:
Would you (actively) divert a moving train from its target, so that it doesnt run over 100 people, if it means that it will run over and kill you and your family (plus potential research in this case)?
We currently have decades worth of PFS sufferers that we might be throwing under the bus if finasteride and similar medications are taken off the market.
You might think that my premise, that interest in research will drop off significantly if the medication is removed from the market is incorrect, but thats irrelevant re accusing me of being barbaric.
I am not upset at John Satmann for trying to get this off the market. He has to do it, his son died due to PFS. However some PFS sufferers will feel differently. Both positions are understandable.
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There are several other drugs in the survey that are believed to cause PFS symptoms. Fin is not the only drug of interest. SSRIs are more widely used than Fin so there should still be interest in the research. However, that’s based on assumptions. If Fin was banned it would be a warning to the other companies whose drugs produce PFS like symptoms.
It’s clear Fin should never have been approved, it’s the most dangerous drug on the planet.
Didn’t Merck tell the FDA that DHT was not an important hormone? It would be easy for the FDA to check that statement and see if it was wrong. I guess the statement was enough to help get the drugs approved.
The company is pure evil whose drugs have killed more people than terrorism in the West. The US has dedicated billions to fighting terrorism yet nothing to stop Merck from killing it’s own people in greater numbers. You couldn’t make that up.
Maybe Dr Santmann’s first priority was to get Fin banned and the research from Harvard and Baylor was there to support their petition.
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Yes but none of them have a foundation so focused on this specific issue.
Just one way all of this can unravel very quickly as soon as finasteride is removed from the market. Interest on all sides will understandably wane.
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#Propecia - The Most Dangerous Drug On The Planet (one day this will be trending)
We are masters of our own fate and are now starting to worry about Fin being banned and the affects this will have on future research.
We sat back for years doing nothing while the Foundation and those involved with this forum worked hard on PFS.
All we had to do was go out into the world and do one simple thing, tell our story. If you were too embarrassed to tell your own then tell someone else’s. Publicise and educate people about PFS. If a 100 people posted a PFS story once a month on the internet that’s 1200 stories in a year. Imagine how many people that could reach.
@LazarusRy posted his story on Facebook and received lots of messages that created a good discussion. 4 people told him they knew someone who had taken propecia and committed suicide. This is in one small part of the UK. PFS is destroying far more lives than we realise. This is a major medical problem that is vastly under reported.
Instead of telling our stories we talk about getting journalists to report on PFS or suggest creating a documentary about PFS. This kind of thinking is typical of the forum, lots of big ideas but no action or end product. @Sibelio posted an idea about rat studies to help us Rat study for testing protocols. Realistic or not?. This post is now drifting down the general discussion section soon to be forgotten. We jump from one discussion to another in need of our PFS fix and nothing gets done.
@pvdl is right the door looks to be closing and many of us are going to be left trapped on the other side. Dr Santmann is working tirelessly to shut this door while we sit around having another discussion about something we can’t do anything about.
Over 400 posts were made on the Baylor thread yet did anything change? We are now posting about the petition yet we cannot change what’s already been done.
We should be spending time on other websites telling our story or someone else’s. While we are here we are doing nothing to advance our cause. Any website were there are men there are people who could take Propecia and be affected by PFS. If they don’t take Propecia they may know someone who does.
Health, Finance, Gaming, Cars, DIY, Chess, Art etc the list of websites is endless. We have a diverse range of interests we could reach far more people than the odd newspaper story on PFS. We have the opportunity to be our own media.
I believe that this forum is only the tip of the PFS disaster. We could be sat here with thousands of other men from around the world and our PFS survey would be over flowing with participants that would seriously help those trying to get scientific interest in studying PFS.
I’m ashamed to say that I am one of those people who has sat back and did next to nothing on discussing PFS outside of this forum. I have made numerous and pointless posts on this forum that have done nothing to help the guys here working on our cause.
Why do we not post about PFS elsewhere? Are we ashamed or embarrassed? Do we think it’s beneath us or have we convinced ourselves of another reason. Is it because there is no gratification from doing so. No like button to massage our egos or someone to agree with our comment and make us feel like our opinions are important. These are all mental insecurities but it’s you that has to live in this body and feel the affects of PFS not your mind.
Where do we go from here? We need to decide on whether we are happy living with PFS for the rest of our lives. That answer should be no for everyone. You have no idea what medical complications might come about in the future from having PFS.
Why would you accept damage caused to your body by a Pharmaceutical company. Would you accept someone coming into your home and hitting you in the face? Merck has come into your home, messed with your lives, and in some cases damaged your careers, relationships and screwed you over. Yet we have just accepted this. Like I said if this had happened because of the actions of one person you would fight back. If that person took away your job, your partner, your savings you would fight back. Instead we just come here and repeat the same things that men here have been doing since the forum began. The future is often a repetition of the past. Human beings move in cycles because we are creatures of habit. Let’s change our habits for the sake of our futures!
Next please consider telling your story or that of someone else’s. We need a small paragraph on why Propecia causes PFS. Without this people often think we are lieing about PFS. They cannot understand how a hairloss pill could destroy someone’s testosterone or brain and leave them suicidal, tired or shrink their sex organs. They don’t understand how important DHT is to make testosterone function properly.
Please read the article in the link below.
DHT is the strongest male hormone in the human body. It is the essence of male health. DHT is needed for Libido, Erections (DHT increases morning wood frequency), Penis size, Facial Hair Growth, Prostate Health, Drive for Success and Accomplishment, Decreases Anxiety, Mental Toughness, Prevention of Water Retention in Upper body and Face, Prevention of Gynocomastia (Bitch Tits), Body Hair (Especially on Limbs), Reduced ischemic heart risk and Reduced Alzheimers risk.
Somebody here mentioned that Merck told the FDA that DHT was not an important hormone. Now you can see from the list above why you got symptoms from taking Propecia.
So this is where the education part comes to connect the cause with the effect.
I’ve read the comments online, this lack of understanding on the cause is a common theme. Doctors aren’t willing to educate people so it’s left to us or the odd media story.
If you post about PFS you are accessible so people can reach out and ask you questions. They won’t always do this with a newspaper story and any doubts may get left unresolved and they move on to something else. Try and be brave, post about PFS even if it’s someone else’s story you will be making a difference. You have interests, hobbies go to every site you’re a member and leave a post about PFS it will get noticed. Consider yourself doing a good deed for society, you would want others to do this for you so please do it for them. Like me many never go to hairloss forums before trying Propecia. So let’s expand our thinking and post were men reside.
Post on your social media and encourage others to share the story. Tell your friends you are looking out for them and don’t want to see others get hurt. You will probably come out of this appearing thoughtful and nice. You can turn a difficult subject into a positive. Tell people to share the story with anyone they know who is taking Propecia. Why are we doing this? Because Merck conveniently left out the full side effects on the drug label so people are consuming this medication with no idea it can leave them with permanent damage.
If you are struggling with what to write I’m happy to help or ask someone here.
By sitting here contained on this forum we have made Merck’s job of controlling PFS extremely easy. Every time we post here and not elsewhere we are helping Merck and they know it. I expect they have been watching this and other PFS forums for years and are likely very happy with us all grouped together going around in circles. If we split off and went out into the world they would be faced with chaos and a loss of control. A flock of birds sitting in one spot in the park are easy to monitor but when then go off into separate directions suddenly you lose control of were they are. This is no different.
Sadly the door is closing and the window of opportunity is getting smaller. Our survey should contain over a thousand participants instead of a few hundred. I went over to another PFS group and mentioned the survey. Several more came here and filled it in and they agreed to post a link on another site to create more awareness. That took about 10 mins to do but the affects of that conversation will last a lot longer than 10 mins.
Once you get things out there you can create something that exists and can grow and help us all. Please create something in the world about PFS. The people trying to help you are here, they need a big survey to convince scientists to take PFS seriously.
If Fin is banned this group will gradually shrink in size and die off. You will still be left in the world living with PFS only stuck on the other side of the door.
If you disagree with what I have written and want to argue over the finer details with me I’m sorry but I’m not interested. If you can suggest an improvement then great. But I’m tired of pointless debates and so should you!
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Well said ac3c, lots of good points and suggestions. I feel if we all buy into this approach we may start to get somewhere
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Setting up a monthly recurring donation to the foundation is one of the most important things people can do. I dont expect fin to be taken off the market without scientific evidence.
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The science is there which has all been laid out in the citizen petition. There is a large epidemiological study showing PFS appears in about 1% of 5-ARI users. Evidence of PFS showed up in the original Merck clinical trials which they hid from the public for 20 years. We have plenty of evidence that Propecia alters neurosteroids. There are also plenty of animal studies showing finasteride is persistently bad for sexual health. All of this risk for a cosmetic drug that doesn’t even work all that well.
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Why have the lawsuits all either failed or resulted in meager settlements then? If the evidence was so clear, why arent the payouts larger? Lets see what happens.
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Law firms wanting to cash out. Which law firm would want to fight a mega corporation, for a chance to win when they can settle and be guaranteed a few million and not have to spend any more time on the case.
I highly doubt these law firms have our best interest in mind.
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What’s this garbage
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Saw that, also these
Skeptics used to say PFS had no data to support its existence. Now there’s published studies showing biological differences between PFS patients and control groups, the studies are “questionable”. Or they simply carry on as if these studies haven’t taken place. Another older example from 2015:
https://www.healthnewsreview.org/2015/08/advocacy-group-spins-harms-from-post-finasteride-syndrome/
The PFS Foundation is presented as an “advocacy group” who “spins” information. One of the categories for the article is “disease mongering”.
As a patient group, we really are up against some nasty, willfully ignorant and crude parties, of various factions, be it Merck, dermatologists, the hair transplant industry or even urologists as seen in those tweets. It’s difficult to think of many examples, medically, where two decades of patient reports and peer reviewed studies which support what these patients are saying are met with such incuriosity, resistance or outright besmirching. The Trueb paper might as well be a modern day dermatological diagnosis of female hysteria https://en.wikipedia.org/wiki/Female_hysteria
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This shit still makes me so angry, even years after living with PFS. The anger makes you want to send angry emails and messages to them and its slightly cathartic for a few minutes but it backfires.
I believe a couple doctors I have seen don’t believe in PFS mainly because a lot of patients come in very aggressive and angry so the docs (lacking the slightest bit of EQ) assume they’re crazy, which is causing the ED. Anybody with a modicum of empathy would understand why patients are so angry but they’re trained to think robotically. You can see this in the Dr. Trueb paper.
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I think it is mostly self interest that is driving the denialism. Willful blindness is a common reaction to unpleasant truth.
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Self interest explains some but there are a lot of causes in this case. Urologists would make a lot more money by performing prostate surgeries for BPH over prescribing a pill.
A lot of these doctors defer to authority and Merck has bought off a lot of “thought leaders”. The FDA is the ultimate authority which is why this Citizen Petition is so important.
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It’s more important that we stop sitting around like victims and start taking charge of our own futures. Santmanns first priority is to get Fin taken off the market. We have a chance to take back our lives by telling our story and publicising PFS that will drive up numbers for the survey and get people talking about this condition. We have a potential study idea by sibelio so we can change our circumstances or we can continue to be known as the victims of PFS. It doesn’t matter how successful you are, how rich you are, in the end if you have PFS you are a victim of Merck’s wrong doing. We will leave this world knowing we’re a victim.
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ac3c You are largely right and it is important to ask everyone to get involved. I will certainly repeat myself but anonymity partly kills the cause and makes the game of all those who have interest to leave you aside. We see that with a voice, a face, listening and the gaze of others change, credibility increases. There are some simple things to do, such as picking up all the guys who complain about ES on the hair and sports forums, but listen to those who tell them it’s psychological. It should also be that everyone regularly report its adverse effects to the health authorities because many do not know that if it is not done regularly, your records are classified in “transient effects”. It is estimated that only about 5% of victims are counted so I let you imagine how much you really are, it’s huge! More victims are registered: more research there is and less authorities can close their eyes … Finally, we must stop thinking that we have no means of action, it is false and wait-and-see attitude do not make progress … Together we can do a lot more.
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This is great holyhead. Do you’ve some kind of notification system set up? It’s important to record the names of these doctors. The previous study we were familiar with was also from BWH - lt seems BWH has unconscionable bought out (by merck) folk who disapprove of PFS.
More…
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