Sweet, always nice to see this happening and at a decent pace! Will be donating forsure
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Glad to see this as well!
I was able to donate $250 in the past and in a year’s time, the results of his phase 2 study was already published. If you’re on the fence of whether you’ll see a tangible result with your donation, please be assured that Melcangi has delivered in the past.
Hopefully phase 3 and 4 will clarify even more of the problem. Perhaps we’ll get a lot of benefit from a combination therapy of sage-217 + probiotics? Hang in there for 2019 guys!
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I don’t want to sound negative and I will try to write a longer post about this later BUT spending money to the tune of tens of thousands of dollars studying gut microbiota is a colossal waste of time and money. I almost cannot believe it, it is so stupid. Reckless, I would say, given that people are dying. Nothing will come out of studying gut microbioata, mark my words. This is not the cause of PFS. I don’t doubt everything including gut microbioata is related to everything else in the body but no treatment will ever come out of such a study, nor will the mechanism of PFS be understood. As for the other Melcangi’s study, I may comment on that later as well.
We should be funding a RAT STUDY TESTING TREATMENT PROTOCOLS instead!
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I’m going to trust the renowned scientist with decades of clinical experience that he may be on to something.
Further, he’s not just testing gut microbiota - this is simply one of the phases to possibly create a link. They’re all important but surely phase 4 is one to keep your eye out for.
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Melcangi is a very talented man and has published the most in-depth and promising research we have to date. Super happy to hear an update on all this progress… looking forward to donating as much as I can over the next few months!
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Well when you start your study I’m sure we can all donate to it… In the meantime I’ll stick with Prof Melcangi and his background of 30 years of scientific research and the expertise of the PFS foundation.
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Just donated!
This along with @awor post about hiring has been terrific news and I’m proud of the progression. I’m thankful for the moves being made and look forward to contributing whatever way I can.
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Ok. Appealing to authority works sometimes but it is usually not the most direct route to truth or progress.
The usefulness of these particular studies aside, it is also worthwhile to ponder the different incentives different actors have.
First, I’ll tell you what my incentive is. I want to find a treatment before I kill myself, which can be any day. This is the absolute first order of business - before I can ponder why the treatment works. That’s pretty clear and self-explanatory. After I patch myself up, then I can start thinking why the treatment works and what underlies the condition and what the big implications for science are.
Now a different incentive: What does a scientist want? A scientist wants to discover something big, to come up with big theories, to prove to everyone how smart they are. A scientist would much rather explain a piece of a big theoretical puzzle than solve the puzzle without having an explanation why the solution works. There is no glory in giving 10 groups of mice 10 different (existing) treatment protocols and discovering that one of them works (the way most treatments are discovered by pharmaceutical companies) and not having the slightest idea why it works. No theory or phenomena or discovery is named after you. That should be pretty clear too.
Now, what I am not clear about is this: what does the PFS foundation want?
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I want you to be cured or at least find some kind of treatment that enables you to have a happy life. I want this for everyone.
This is the mission statement of the pfs foundation:
“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.”
The Melcangi study is one part of the many things that might help us. I think its something that should be celebrated, and phase 3 is already funded thanks to amazing people who have paid for it in full. Surely we should be supporting research and not knocking it down. We also have the Baylor study and possible medicines like Sage 217 and our own 23 and me project.
I’m all for people doing their own research but we can only do soo much as individuals and we need science to find a way out of this. As much as we may want to we cannot expect every research study to be organised exactly as we would like it.
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Prof. Melcangi has shocked me, it seems to him that many of us are “not real”.
what does that mean?
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Means what I said.
Come in private and I’ll tell you better.
Personally I was offended. We are not dogs.
Melcagni doesn’t seem to acknowledge physical symptoms. i.e: tissue changes.
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Do not recognize many of us!
Melcangi is not gonna deal or acknowledge saw pallmetto sufferers because it is not deemed to have medicinal qualities…He is only taking people who have used finasteride…But anything he would discover would apply to those as well…
You would have to model pfs in rats first before treatments and no one has done this…
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That’s ridiculous. I may return my previous post that I deleted then because I have so many physical changes it’s disturbing
Hey Sibelio, I can appreciate you and Gent’s point of view. I personally relate and share the same type of enthusiasm towards better focusing our money and efforts on more direct matters. However, rat treatment protocols is precisely the exact thing Roberto Melcangi has been focusing his efforts towards. Additionally, he is definitely on to something when it comes to researching gut microbiota in the context of the the peripheral steroid environment (steroid hormones coming from peripheral glands). Please read his full research paper that he last published and not just the first couple paragraphs. His argument suggests that there lies a distinct relationship between gut microbiota and sexual side effects (he describes it as gonadectomy, or the removal of male testes in mice). He goes on to say the following, I quote - and this is important because it plays directly into the overexpression discussion:
" it cannot be excluded that modifications in neural function, as a consequence of the changes in brain levels of neuroactive steroids, may in turn alter gut microbiota control. Although 5α-R activity has not been evaluated so far in gut microbiota, some observations seem to indicate that intestinal epithelial cells are able to synthesize glucocorticoids (Cima et al., 2004) and that some microbial species, such as Clostridium scindens have the potentiality to convert glucocorticoids into androgens (Ridlon et al., 2013). Therefore, an alternative possibility is a direct action of finasteride on gut microbiota."
Of all the papers of I have read regarding Finasteride, Melcangi is BY FAR ahead of the curve when it comes to Finasteride withdrawal research. I don’t think this is a waste of money, to be clear.
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Yeah I’m a god damn mutant now compared to before…
There is a lot to be said about this and I may try to do that later on. But very briefly, I will say this.
Melcangi seems to believe that depression in PFS is caused by some mysterious change in neuro-steroids (which is just another version of the flawed chemical imbalance theory of depression). Of course this is wrong, as anyone on this site hopefully knows. Depression in PFS is caused by the sexual side effects. No doubt neurosteroids are involved somewhere in the complex causal chain as mediators.
Melcangi did a rat study giving rats finasteride. Then he gave them a forced swim test - to test for depression. This is all great. But did he give the rats a sexual behavior assay? The answer is no. I would like to hear of any good reason why a PFS study would not test for sexual function before anything else. This is how you establish the existence of PFS: you give rats finasteride, you withdraw them, and you observe what percentage of them get long term sexual side effects. Why didn’t he do that? This shows a fundamental misunderstanding of the condition or complete misalignment of research interests.
The efforts in PFS research should focus first and foremost on why sexual function is altered by finasteride. This is the most direct route for understanding the condition. Everything else is a very indirect route. Of course I would go a step further and argue, as I have, that an even higher priority should be to look for treatment protocols, which nobody has ever done and nobody seem to be interested in doing, Melcangi included. Why we as PFS victims are OK with this priority structure I do not understand.
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