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 doesnât 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 donât 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 donât know the story behind fin.
As I said, letâs see what happens from now in five years.
Whether people protest outside Merck headquarters or not, such talk is of course in response to Mattâs 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 havenât done so already. However, I wouldnât 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. Itâs 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 donât 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 doesnât show essential results, many ppl will not go further in life. This is the chance for all.
Iâm not worried about why itâs delayed. This is pointless and pessimistic conversation that I am not going to continue since itâs Mattâs 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 â or rather, do we have a way of estimating and has anyone done it â 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 havenât 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.