They edit that out about pharmacologic treatments lol…Yea I think one thing that is becoming more and more obvious is that if this drug has done the damage they claim ie…epigenetic gene changes, brain alterations and changes on Cerebrospinal fluid there is nothing that can treat it without something new being invented…There is nothing to even treat the symptoms let alone the actual disease…All this is just speculation nobody knows for sure…
So what kind of research into PFS would you endorse?
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Is there some kind of board of directors that oversees the foundation? If so… are there names for these people? How is the foundation governed?
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The Baylor research is the only thing I’ve seen so far that could help take us to the next level. I trust Awor knew what he was doing all those years ago and wanted that study doing based off his research.
I would endorse Melcangi to wait on the Baylor study results, analyse them then work with another institution that specialises in Epigenetic therapies such as Albert Cheng who has already produced a therapeutic approach to targeted demethylation. But what do I know
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Wouldn’t proof of widespread epigenetic changes make it more likely that Finasteride is banned too? Truth be told, I believe that Melcangi is more likely to be of help to us than Baylor.
Baylor’s epigenetic part could still be years away. Meanwhile Melcangi is releasing roughly a study per year, furthering our understanding of PFS.
He has revealed deficiencies in neurosteroids, insight which could provide for avenues of treatment in the near future (like Sage 217).
Meanwhile even if Baylor publishes a list of epigenetic changes we will likely be powerless to act on a way to correct them for many many years.
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I’m not convinced on this “door shutting” scenario that you’ve put forward here and in the petition thread. The FDA citizen petition from the Foundation was submitted two years ago; the drug remains on the market both for BPH and AGA. Clearly, the petition alone hasn’t been sufficient to change the FDA’s stance. Now, lets imagine that finasteride is removed from the market (for AGA or altogether) at the behest of the FDA. This would mean that some new, unignorable piece of evidence has emerged which provides a causative link between the drug and the disease currently termed PFS. In this scenario, withdrawal from the market would make Merck’s culpability explicit and there would presumably be vast sums of compensation involved. If we look at another one of Merck’s drugs which was withdrawn from the market, Vioxx
it’s clear that withdrawal from the market lead to gigantic sums being paid directly to victims. If compelling evidence forced finasteride to be withdrawn, I would think the sums that would potentially be paid to victims could be collectively pooled for self funded research into a treatment. This is just one scenario. There is another in which government funding could be forthcoming if the implications of this disease are as far reaching as we suspect they are.
As for stating the Foundation’s key objective is to have finasteride withdrawn from the market, I’d first direct you to their welcome message on their home landing page
The Post-Finasteride Syndrome Foundation’s primary mission is to fund research on the characterization, underlying biologic mechanisms and treatments of post-finasteride syndrome (PFS). Other goals include generating public awareness of PFS and providing support for patients suffering from the condition.
As @axolotl has suggested, the notion that it’s in our interests for finasteride to remain on the market because the patient number will increase, which would lead to public demand for a cure, is highly faulty. I think that having the drug withdrawn would be immensely in our collective interests, as well as in the interests of potential future victims. A scenario I would not like to see would be this: finasteride remains on the market but, as newer and safer hair loss treatments are developed and sold, and hair transplants become cheaper, more innovative and widespread than they already are, the drug eventually loses market share for AGA treatment and Merck (and generic manufacturers) quietly remove it from the market citing profitability concerns. Then I think that media and wider public interest into the drug’s affects really would diminish. The stink that FDA mandated withdrawal would create is far preferable to that.
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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.