Exactly. Good point with Alzheimer’s. And obviously that’s far more understood and simpler that the worst of this shit. A lot of doctors don’t even know that much about brain receptors and stuff like that.
Mild PFS is an oxymoron in my opinion. I am suffering immensely and I wasn’t even ever going to lose my hair. I was just paranoid and did this for nothing.
Anyway CRISPR can be put in brain btw…
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I honestly started to believe that full recovery is not “real”. I mean i pessimisticly don’t believe that my bend penis will correct itself in one day if my hormones fixed somehow. I mean, ok we heard many stories where people reversed their shrinkage and other symptoms 100% but what if they were an illusion itself? A sad compromisation?
Maybe they just got %90 better. Its been 4 years and i don’t even remember my healthy penis size anymore. Things start to be new “normal” for many of us. And im actually the mildest case in this forum. What if those who recovered really forget their healthy libido and penis sizes through years and consider their improvements as a complete “PFS reversal”?
Just asking this, i want to stay hopeful of course. But how the heck a bend penis can correct itself? If anyone has some positive- temporary experiences about this, i wanna hear…
We can agree to disagree about there being mild cases of PFS, PSSD, or PAS but there are many on this board who would gladly trade places with you, myself included. We can compare symptoms if you want but I hope you get the point.
CRISPR is far away from being used in the human brain. We aren’t mice or rats. And this condition is more confounding than other neurological conditions. The worst of this seems to hit at a receptor level which is why many get no relief from any drugs (therapy or recreational) or alcohol. And figuring out etiology of these conditions (PSSD, PFS, PAS) seems pretty far off as well. And then fixing it with anything that’s gonna be available in the next few decades seems far off. I frankly don’t see it happening EVER. And if it ever does most all of us will be dead by either suicide or old age by then.
The fact that you are willing to wait 20-30 years for a POSSIBLE fix shows that their are levels to this suffering.
So guys just a little update the guy who they did that story on is very well versed in CRISPR and what it can be used on and I asked him to look into our condition and sent him studies on it. He replied saying the following:
That’s actually why CRISPR is limited in fixing the problem… most of what’s occuring is a reaction, maybe at the epidemiological level but CRISPR’s not good at those edits, because those change all the time, it’s the “non-junk” DNA that CRISPR can edit well, you need to be able to figure out the acfual DNA to swtich, and on epidemiological changes, that can be nearly impossible to find…
My reply:
So you’re saying it’s a lost cause…
My only hopes were on that treatment everyone who has this condition is focused on CRISPR
His reply:
I am not saying it’s a total lost cause.
What I am saying, is that CRISPR isn’t going to be the sole solution. You have a multivariant issue. There might only be one cause of this issue, but obviously the cause — propecia exposure, has triggered multiple system failures. CRISPR is good at treating genetic triggers and things stemming from a bad code that needs editing out – something like 27 different genetic disorders are rooted in one single adenonuclietide (sp?) – that just needs to be switched to prevent them all…
But what you’re describing is an autoimmune response, a hormonal imbalance and inability to re-balance, damage to certain neural receptors, and systemwide reactions. There’s just too many points for one solution to fix all of them.
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I like your posts but you would mind trying to use proper punctuation? Your never ending run-on sentences are exhausting to read.
Maybe your right. My analytical mind doesn’t believe CRISPR will work for us because of how much of a systemic bomb this is, but deep down I’m trying to keep up hope.
Anyway, maybe Sage 217 can help the depression / sleep in two years at least.
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Thanks @Papasmurf but I dont think any person who understands how the world works needs confirmation that a technology that is still in early development and that has no proven link to fixing PFS, which itself is not understood, will not fix us within 10 years.
As I said before: We will not fix PFS in the next 20 years, probably not even in the next 50 years. Anyone pretending like they have grasp on what PFS is or how to fix it is a fool, and if you dont believe me believe the Italian doctor melcangi. Melcangi said no one knows what PFS is.
If you think the theory of us not fixing PFS within 50 years is pessimistic think about this:
The first part of a study (Baylor) took almost 7 years to complete. Thats 14% of the 50 year timeframe! We are a tiny minority and underfunded, therefore there is a good chance that PFS will be forgotten by the time the technology arrives that could fix it. I.e. people who have PFS might have died out, the drug taken off the market by the time medicine is advanced enough to fix the problem.
Thanks for the advice.
There are a lot of things Melcagni doesn’t know, that’s for sure. Chief among them is the source of the psychological and neurological symptoms of PFS, which he believes is rooted in a chemical imbalance of neurosteroids!
Otherwise, you convey a level of certainty in your predicted timeline that I find entirely unsubstantiated.
It is important to know that little progress has been made in PFS research so far because there has been little research on PFS. That can change very quickly if and when research starts being done.
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Not at all:
The average time to market for a concept drug is 12 years. Lots of studies still need to be done to get to the concept drug point, where will the funding come from? Even if they will be done, it will take a lot of time until we figure this out. I can only point to the progress of many other chronic diseases with orders of magnitude better funding as a reference point.
As I said, its a game of probabilities since the future is never certain. But the probability that it will be fixed within 10 years is certainly much lower than the probability that it will take more than 20 years and even 50 years.
It’s basically impossible to fix this within 10 years.
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You might be right @pvdl I underestimated this condition and the domino effect it has on so many systems. It was a cruel blow to hear this guy say that CRISPR is really no use to us so where does that leave us in search of a cure
I don’t think this answer is based on an accurate conception of what PFS is. Hence, I would not take the answer very seriously.
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Its really immaterial either way. So much today is hype, its incredible. The latest technology, which often still needs decades of further development, is hyped up like crazy by the media.
Any claim that it will take less than 10 years for a PFS cure is the extraordinary one, not the claim that it will take more than 20. I think people need to realize this and adjust accordingly. Its absurd to “wait” for a cure even subconsciously, since it most likely wont arrive in a timeframe that most would deem relevant.
People need to confront likely reality not a bunch of overoptimistic spin.
I am not saying dont donate. To the contrary: The acceptance that it is a complex issue should motivate to donate small amounts over a long timeframe, instead of hoping for a miracle on the shelfs of walmart.
The guy knows more about CRISPR than any person on this website so I trust his intake on this. He might not understand the full mechanisms behind what finasteride did but we know it’s not one mechanism that’s been effected and CRISPR like he said is usually targeted at one defunct gene.
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No, we don’t.
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Altered levels of neurosteroids, receptor silencing and about 30 life changing side effects thrown in there. I can’t see this being one mechanism
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If you can’t see it then most certainly it can’t be.
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