The problem is it’s a small percentage…If it was 15 to 20 percent affected it would already have been removed IMO…its so low maybe around 5 percent? Its allowed it to slip through for all these years…And there is a big variation in those are affected from annoyance to disabled physically and mentally…
In another unfavourable scenario once scientific studies start to collectively show an overwhelming amount of evidence couldn’t they in theory just take it off the shelves citing profitability issues when in fact it was the studies that were becoming alarming that’s what would worry me.
I worry what those rates would look like if the entire population of people on the drug could no longer get it. There’s clearly a significant increase in symptom severity that happens when people stop the drug. I and many others have reported this.
Of course we want this drug off the market, but at the same time, can we really say that coming off of the drug is safe. Beyond that, what if no cure is identified. Obviously my bigger regret is taking it in the first place, but if I knew that I could function at 70% on the drug versus 0% off of it, I’d never have quit.
That might be a controversial talking point, but I think that it really speaks to how poor our insights are into the biomechanics of the condition.
I think if overwhelming evidence emerges, they won’t be able to quietly do anything with the drug, certainly not withdraw it, without significant scrutiny from media and probably governments.
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Good point.
I am glad Phil corrected the originally misleading text in his mailing from:
Hence Phase IV, in the team’s first-ever effort to identify a pharmacological therapy for PFS
to a more realistic:
Hence Phase IV, in the team’s first-ever effort to move beyond finasteride’s effects on neurosteroid levels to its effects on neurotransmitter signaling in the nervous system
in today’s corrective mailing.
Just to be clear: Melcangi is a neurosteroids and nervous system specialist. In all of his much appreciated work on PFS, this has always been his focus, and by the nature of his specialization continues to be. Meanwhile, the patient community is well aware that PFS is a multi-systemic syndrome which goes far beyond only neurological related effects, and what his tight focus is able to explain (see our survey results). I by no means want to disregard the interesting and important effects of PFS that Melcangi has found, such as deregulated neurosteroids. It is my hope, though, that we will find a more comprehensive and root cause oriented approach in the foreseeable future. @axolotl and I are pushing ahead in that direction.
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Meanwhile he wants 160000 usd (?) for his research from the foundation. Is there a split in opinions regarding strategy between yourself and the foundations board? Or is there just a lack of interest from researchers, or ideas what else to research? Also what about baylor? Didnt you design that study to prove/disprove your theory? What happens when its inconclusive, what does that mean re your theory?
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Melcangi’s project is not the “strategy” of the Foundation. The Foundation is just helping Roberto find donations for his study. If there were other viable propositions out there it would likely try to help out with those too. The problem is that there are none atm. That is what Axo and I are working on. It doesn’t mean that Melcangi’s project is bad. It just means that the “neuro” angle cannot be the only game in town.
And yes, there generally is a lack of interest from researchers in these drug related side effects. Here again, I am a strong believer in a bigger picture which has more scientific relevance. Advancing in this area is the personal focus of @axolotl and myself.
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If I had not lost my job, my car, my house and if I had money aside, I would donate to the Foundation without any problem. I need very little money to survive. If I ever get compensation, I’d give most of it to research.
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Victims shouldn’t have to pay a penny, that fraud of a human Kenneth Frazier should be shelling out money for the research!
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This sounds not very promising I won’t fund a study which is more or less made to ban the drug instead of finding treatments against its side effects. Fuck Propecia Fuck Merck and fuck this foundation policy. Enough money was wasted for nothing.
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If the drug was banned it would put a lot of attention on Trump.
I wonder if Trump knows about PFS ?
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These seems to be just like a hobby more less or a pet project of melcangis just out of curiosity.
Thank heavens for that. If only we had more people who took an interest in PFS research, hobby or otherwise.
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We’ll have to wait until PFS get covered on Fox News.
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Solving PFS could be the key to preventing WWIII
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Lol. A disease caused by a medication a minority of the population consumes of which below 1% is affected needs to be cured to prevent WWIII. Good humour.
Ain’t your neighbors Joe Blow or Jane Doe starting wars, but the fraction of %1 of the population. Come on, didn’t you pay attention in class. Maybe the PFS Foundation should get in touch with the Bulletin of the Atomic Scientists.
That made my day, thank you 
Probably he meant that if Donald Trump get fucked we are all doomed lol
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