Do you really think screaming infront of HQ will be enough or even relevant? If someone shoots himself to make a point, as some have suggested, you might get an article in the washington post or new york times instead of a local newspaper. For one day. Congratulations.
Enough, probably not. Relevant, yes I think it would be relevant why would it not be? Do you think Merck wants a bunch of picketers standing outside of their HQ with huge signs that read “Murderers”? Do you understand how negative that kind of publicity would be? Propecia is multi-billion dollar market for Merck. Now consider how negative the national media would portray the drug considering that the president of the most powerful country in the world is on Propoecia and doesn’t even realize why he can’t sleep at night. I don’t think this drug has even scratched the surface re: it’s long term effects being exposed to the public. There are new companies forming everyday (literally as we speak) who are launching marketing campaigns of Finasteride via social platforms and making a lot of money doing it. I don’t see your point as to how it’s not relevant.
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It’s incredibly sad to hear of Matt’s passing. Like some of you I didn’t know him personally but in some ways we shared Matt’s struggles and difficulties of living day to day with PFS. In that respect we were much closer to Matt than we realise. His death is once again a difficult but truthful reminder of the devastating effects of the condition we call PFS.
Perhaps due to a lack of published information and support from the medical community PFS can feel like a lonely condition especially when those closest to us don’t understand or choose not to believe us. This can leave us making very difficult decisions by ourselves that even a healthy person would have a problem dealing with.
Society tells us get an education, work hard at your career, own your own home and raise a family, the so-called Western dream. Sadly nothing in that journey has prepared us for a life of PFS. Matt fought hard to help himself, supported others and shared his own knowledge of this condition. He did what he could and eventually his symptoms became too difficult to live with. Matt’s suffering is now over.
“Creativity is intelligence having fun”. As an Illustrator Matt was very creative, wherever he is I hope Matt is having fun and those closest to him take comfort in the creations he left behind.
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the way this dude is justifying mercks act makes me think maybe these all is our fault :)))), yup lets keep living our miserable lives and let the ceo and other bigshots in merck enjoy their money came from people like us , gathering in front of merck will do good 4 pfs patient rather than crawling in different forums like a crippled dog.
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Are you interested in the proven fact that Methadon has a therapeutic effort when added to a chemotherapy? Or have you ever heard that?
I guess no. That will be the same with PFS.
As I said some months ago, ppl must be also emotionally touched to kinda feel what can happen. This is how ads work. Nobody seems to be interested in pure facts. To much information outwhere. My friends read about pfs some years ago but never were touched. Now as they know a victim (me), they are touched and wont ever take fin or anything influencing hormones.
And I have the impression there are more ppl getting aware of pfs here. And that inhibiting 5ar (DHT) is castration. Nothing else.
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If we share some links (foundation/Matt’s story…) to our friends on social media, what would happen? We would need to warn also young ppl. via social media. The label alone is full of bad information.
The foundation can only do work if we do work. I.e. the foundation needs funding and in order for us to be able to fund it we need to work.
“Let the foundation do all the work” only makes sense if you are not donating. Of course those working at the foundation are doing something special and more work intensive than an individual donating.
Its not enough because the amount of people affected severely is too small to receive significant publicity. If you gather infront of HQ you will not receive any significant publicity. People will think that a few nutcase hypochondriacs are throwing a hissy fit (at least thats how the overwhelming majority will react, especially if you have a sign with “murderer” on it). I would even say that a protest with murderer signs would hurt our credibility and thus cause. Just think how someone from the outside will react: Hello what are you protesting? A medication. What is your problem? My cock has stopped working. And then he looks at the sign “murderer”. It will look ridiculous, even though someone who has PFS might interpret it differently (and take into account all symptoms).
Things will change as soon as there is scientific prove and an explanation from a reputable institution/ study. If a mechanism is uncovered which is relevant beyond PFS it will be even better, as our cause would gain relevancy. Currently is doesnt matter what you say, as you will be dismissed as a hypochondriac by the wider public and media.
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right now i am lookingfor a SHORT TERM relief for a pfs patient, guess what that would be ? $$$$$$$ so he wouldnt be worry about other shit beside pfs, supporting patients financially would be at least a lil help to people who are going through pfs
Ppl dont care if there is scientific evidence. They dont even understand that. You do. We do in a way. Just because there might be that evidence one day doesn’t mean anything. You think ppl will react diffetently cause you can say scientifique evidence? So, what will happen then? Millions of ppl searching for pfs online?
The point is we need publicity now in order to get attention from different angles.
I don’t thing pfs will be ever recognised as an issue by the FDA or WHO though as a syndrome.
You think that just a hairpill is that protected from M. and FDA? All ppl think it is about money. M.doesnt earn that much as fin is no more exclusively produced by M. Or just about prostate treatment? You obviously don’t know the story behind fin.
As I said, let’s see what happens from now in five years.
Whether people protest outside Merck headquarters or not, such talk is of course in response to Matt’s death. I started donating monthly to the pfs foundation after the lad in Australia took his life. Such tragedy makes us want to act, and whether that be by donating to the pfs foundation or protesting in front of Merck headquarters, it is a way of recognising how terrible all this is and that we want to do something about it. How I feel is that it is important to acknowledge these feelings and to also do something. Of course setting up a monthly donation to the pfs foundation is the first thing you should do if you haven’t done so already. However, I wouldn’t stop someone from organising a demo. Chattering about it online will achieve nothing. Doing something will do something, even if it just to honour Matt and get some sense of rectifying a wrong. At least do something, and respect others wishes to do something too. It’s sadly at times like this, as demonstrated by my own wake up call to donate previously, that we can give ourselves a collective kick in the pants and try and do something more about it.
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Your post is full of speculation, uncertainties, and plain falseness. If there is true, definitive, scientific evidence of PFS existing, the FDA will have no choice but to support it as it is required by law.
Plz, do your research on your own if you don’t know the facts. My gosh, are you kidding me.
You think that studies will show pfs is a disease and therefore the FDA will recognise that. First of all, these studies should take place in the US.
Second, there should be a Doppelblindstudie (German). You seriously think this will happen?
As I said, you can wait thousands of years until this syndrome will be accepted as an disease. Cause it is not only fin which causes pfs syndromes. All drugs reducing 5ar or reducing androgens causing similar symptoms could be then targeted. You think that pharma will allow that, on this earth? Man, you still think that the law is equal for all of us. Vioxx scandal? No problem, M.goes on. You forgot who owns the pharma. Haha, you cannot fight a normal fight against them. Too powerful, too intelligent. You are too naive or you play it.
I give you all my money if this syndrome will be accepted as a disease and the root causing all this found within the next ten years! All my money. Everybody can read this here.
Optimism is a lack of information. But of course, the foundation is doing the best it can. I really appreciate the great work of Dr. Santmann. Good luck.
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It is just now that we are really looking at the molecular mechanism behind this with Baylor and the people (us) are taking scientific action via the two community based studies. Give it a chance noprop.
Baylor? The studies which have been delayed? Why do you think such important studies are delayed?
I can assure that if Baylor doesn’t show essential results, many ppl will not go further in life. This is the chance for all.
I’m not worried about why it’s delayed. This is pointless and pessimistic conversation that I am not going to continue since it’s Matt’s thread.
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Pessimistic? Oh, wait. Harvard studies were not what we expected. We could not influence anything.
Baylor: You have the same information as I have in this point. But I know - unfortunately - that all pfs studies in the US are surveilled. You can call me idiot or whatever. Or conspiracy theorist.
Because Matt is dead, I am not accepting those naive statements that Baylor will show us anything. Once again, you know my bet.
This is an extremely sad and tragic news. RIP Matt.
Do we know – or rather, do we have a way of estimating and has anyone done it – how many people on this forum have committed suicide? I have personally come across the posts of several members who in all likelihood committed suicide but I haven’t looked into it systematically. I think this will be a very important statistic to have an estimate about.
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For how long did he take resveratrol and how much? How did he get worse?
I close my eyes for a moment and that moment is gone.