Phase III and IV coming from Melcangi/Fundraiser

Good to see you can handle other opinions quite well.

Was a student* … and will be again within a year. I will gladly PM you pictures of my loan statements, how long Ive been with my companies which… aren’t merck lol, and my diploma which says May 2018.

I’m also not putting forth my hard earned money into Melcangi’s goose chase. I’ve also recently just purchased a 23andme kit and submitted my data and help where I can.

Your words are brash and irrational. I won’t continue to respond but feel free to PM me if you’d like to continue to make outrageous comments or request what I specified above.

In defense of gents, there are other lines of PFS research which may soon be open to funding.

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Which I am also aware of, and have made my family and extended family aware of my condition and will be able to take donations from them as well for those opportunities.

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Can you elaborate any further about the other lines of research. I’m in touch with the foundation and do not know about this. Perhaps after Baylor is released but that could be the end of 2019 and beyond.

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I was referring to Baylor but haven’t heard news of a next-phase, following the upcoming publication, being in the works.

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I’ve deleted a couple of my posts as they may have been written in anger. I won’t revoke everything I’ve said as I think it’s so easy to tear things down rather than build and contribute and I still remain passionate about the research that Melcangi is pursuing in the hope that one day there may be a treatment for pfs patients. However I shall make no further comment on this topic, and any other topic in the immediate future.

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finally some wisdom
good job
Ur smart,too bad u didn’t wanna work with my friend who has same problems and theoretical approach as u

It’s a shame we really have no one to turn to and no one to really investigate for us…We shouldn’t have to pay for anything as victims this was done to us…

We need more recognition and the medical community backing…They are not gonna remove the drug as now some are saying all these anti androgentic drugs cause the same problem that manifests in different ways and degrees…What are they gonna do? Remove them all and the generics?? Doubtful even when this is proven.

Apparently whatever this drug triggers the mechanism behind it is completely misunderstood and on the cusp of science today…Just beyond the limits but enough is known to kinda pin point the likely culprit.

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Last paragraph hit the nail on the head

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Can someone explain why there’s complaining when this guy is studying things for us? Not many are what’s the issue ? He’s doing things and posting results

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Yeah at least he tells ya something…I think a lot of people are just worn down and on their last legs here hoping for the root and are frustrated that these studies seem to look more at the symptoms of pfs…But as many are aware this takes time like building with legos or putting a jig saw puzzle together…Each study builds and learns from the last…people want to know the root cause is the frustration…

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I will try to explain in a couple of days when I have more time. For now, here is a possible criticism, which may or not not be valid. The point needs to be argued, and I hope I will soon.

  1. These studies will not find a cure.
  2. These studies are not looking for a cure.
  3. These studies are not deigned to find a cure.
  4. Some of these studies are not only not designed to find a cure, but are also not designed to find anything relevant to PFS.

At the same time, these studies cost tens of thousands of dollars. Every benefit has a cost associated with it. The goal is to invest money and time in the most efficient way in order to meet the highest priority goals. The money used by these studies can be used to meet the objectives not being met above more effectively.

The alternative is to fund a rat study testing 10-20 treatment protocols. This kind of study has a significant double digit chance, in my opinion, of finding a cure or at least an adequate treatment within a year. Even if it doesn’t, it will still be a a huge success because it will prove that everything everybody is currently doing won’t work, including CDnuts, including the famed doctors charging 600 dollars, including all the supplements you buy. And then all that wasted money, which is many multiple orders of magnitude more than what the rat study will cost, can be channeled into fundamental research, once people have solid evidence their current efforts are in vain.

What is the chance that Melcangi’s microbioata study will result in a cure within a year? Zero. What is the chance it will contribute to ever finding a cure? Zero.

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do you think it is curable in the future ? like in 10 years ? otherwise i will do something. going to jail forever is no problem any longer for me. and i will do it. i cant kill myself but i cant cope with these headaches. i need to do something

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Unfortunately, I also fear …

That depends on the study.

In order to find a cure (through scientific means), we need to first precisely identify the root cause. Ablating androgens with finasteride (or sp, accutane, ssri’s, etc.) has changed something in our bodies, to put it high level. This change is very likely some epigenetic effect in our cells. Environmental factors (chemicals, medication) have been shown to induce epigenetic changes in countless publications, this is undisputed. Epigenetic changes can persistently alter the way our cells work, and thereby the function of our organs (which are obviously made of cells).

Given the above, the big question is which genes exactly are deregulated, and which genes predispose us to this mess in the first place, given than most guys can take these meds without any negative effects (which still amazes me). Studies which are looking into these questions are by their nature paving the road on the way to finding a cure, or at least some half way effective treatment.

Where I unfortunately have to agree with you, is that Melcangi’s studies do not fit the above criteria. His studies so far have been designed to demonstrate the effects of finasteride and pfs in patients. Such included demonstrating altered neurosteroid levels, methylation of 5ar and altered gut microbiota. This undoubtedly is valuable at a scientific level, makes for some cool publications, and is important for keeping the conversation going in the scientific community. Such information can also be useful for potential future law suits, but it doesn’t pay in well to our “cure” objective. Therefore I feel that we need to keep our expectations regarding Melcangi’s work at a realistic level.

Brigham and Women’s Hospital, Baylor and our own community GWAS project on the other hand, theoretically fit the bill. Needless to say, Brigham was a total flop. Baylor, on the other hand is looking into full genome gene expression, and is therefore 100% on mark with regard to what I wrote above. The problem of course with Baylor is that the study has been going on forever, and is frankly way overdue. I am still hopeful though, that they will end up publishing the goods in the near future. If the publication will not be muddled by political factors (as seems to have been the case with Brigham), the Baylor study could be the scientific equivalent of a Tsunami. Let’s keep our fingers crossed.

Last but not least comes our very own community GWAS project. With some more genomes, and collaboration of the right specialists, we could have a chance of finding some underlying genetic drivers to our predisposition. This would be key to developing an animal model. Melcangi has been feeding finasteride to a bunch of rats, and has shown that they show some depressive symptoms. However, it would not be reasonable to call this PFS. One could only start talking about PFS if the effect (along with other typical PFS symptoms) would persist for many months after discontinuing the drug. This not have being demonstrated to be the case, we cannot be talking about an animal model here. An animal model would need to be genetically engineered to mimic our predisposition, and then “get” “real” persistent PFS once being administrated these drugs.

At the end of the day, we cannot put all of our egs in one basked. We need different baskets: Bespoke ones, scientific ones, community made ones and also some luck. With all those ingredients, in the right mix, I believe that we have the best chance to advance.

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thank you awor. as you mentioned the rat problem, im maybe a help. i had the same problem like these rats with daily finasteride. depressive behavior. but when i cycled it pfs occurred. and that was the case in many members of a german hair loss forum. first the rats have to take finasteride long enough to get hypersensitive dht receptors( 300 days or so) then you give the rats 3-4 times : 3 weeks propecia , 1 week not (like girls take the pill) and then again 3 weeks propecia 1 week not and then let them quit, the most will develop this crash. might be a try ? i think it could work due to the hormonal fluctuations we would create. thanks for your good work and support awor !

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edited my post. first you have to make the dht receptors of these rats hypersensitive to dht. but its only an idea.

This isn’t necessarily true - lots of drugs treat/cure issues without completely understanding the root cause.

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You’re right, many drugs have been discovered by chance. Finasteride as a hair loss remedy, for example, was discovered by chance. But if you look at how drug discovery works these days for complex illnesses such as cancer, they are relentlessly investigating molecular pathways. I am not saying this is the only way. If you understood that, you’re misreading me. My point was when faced with a bunch of deregulated genes, we need to understand which ones are deregulated, so we can counter act. At the same time, someone might discover something that really works well, without understanding why it is doing so. That was my point about the baskets, we need multiple approaches, people working in various directions. Hopefully something will stick.

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