I think there is a chance for a cure soon

As a Microbiologist who integrated exteranal genes in bacterial DNA targets called plasmides and developed models of membran bond proton cation antiporters in the early nineties with all the techniques which developed revolutionary in the last 30 years, I think it’s absolutely possible to find the pathomechanism of pfs (and pssd) soon.

What I’m referring is about the huge developed in molecular genetic techniques and knowledge which should give us hope. I’m not theorizing, just try to summarize where modern genetics are in my words.

The genome is the hard disk the epigenetic is the operating system reading the clusters. This field was only known as silencing DNA through Methylation in the early nineties. I made a practice DNA Methylation at MPI for Moleculargenetic with Prof Thomas Trautner 1988. All our very different tissues as nerves, skin or gut develope from the same omnipotent fertilized ovum. So the identical genome must have a regulation system to differentiate all the cell lines. This is the epigenetic regulation.

This system is in permanent communication with the environment. Pharma marketing needs new medication for shareholders comfort. Noboddy would say this is speculation. So they try all biochemical and chemical agents for some therapeutic effort. Prof Healty said one therapeutic effort and 99 side effects. With this medications the influence direct physiological processes but they trigger the epigenetic regulation like fentanyl, heroin, alcohol does.

2012 already the head of pfs foundation John Santman had the idea to check what causes pfs by an analyses of the activity of all androgen related genes. And the results of the Baylor Study showed 3.800 genes have shown altered activity. So there was a working hypothesis for further studies. Released as Kiel study to find the epigenetic male regulation and the Tampere study to find the predisposition in the genome. The researchers are leading in prostate cancer and Androgen resistance, so huge synergies in research and curefind are available . To find a cure is not an illusion.

There are other hypotheses, that it’s just straighten the hormon axis. For my estimation the pfs community spent 100 million to one billion in this desperation medication just to do something. Only 2012 John Santman a medican and medical software developer with a high systemic knowledge of cellular biology and cellular genetics didn’t invest in HCG studies, microbiome transfer, autoimmune antibodies or animal studies he had a stringent working hypothesis.

But no matter which research approach you chose, please stopp to follow all the dangerous protocols, health-care scamers, medical fraudsters, fake recoveries and theories from people, who read some papers discussing that they know all, but having not even a basic knowledge about anything. For this we all as a patient community throw 100 million maybe 1 billion dollars out the window over the last decades and burned the pfs cure for nothing than an illusion or short relief.

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I completely agree that a cure could be closer than we think. It is not uncommon for people from across the PFS, PAS and PSSD communities experiencing temporary recoveries where symptoms completely reverse for a limited time. This makes me think a cure would be easier to find for say, alzheimers, where patients don’t experience these phenomenas. All conjecture of course but this is what I tell myself to maintain hope lol.

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Shit, there’s a lot of guys out there (hundreds, it seems) who have permanently recovered themselves (or at least, improved their condition substantially). No protocols with great replicability ofc, but I too like to think that this bodes well for what actual researchers/scientists can do. But that’s my own conjecture so who knows

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I tell myself the same thing. It makes sense. @Toughluck24

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If my body and mind go back to exactly how they were before, I’ll go back a changed guy. I wasn’t ungrateful before, but I didn’t realize how lucky I was to have what I had. So, I hope you’re right. It would be a really, really fantastic ending to this nightmare. I wish this hadn’t happened, but, if I were truly restored, then it was a really useful experience for appreciating every moment afterward. I think I’m probably supposed to get that lesson out of this no matter what happens. Not there yet on the unrestored version.

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I think this is how we all feel. Nothing like going through almost literally the worst shit ever to make you realize that there’s a lot in life to be grateful for. That being said, it’s hard for me to feel good about my life as it is but I’m sure I’ll find peace one way or another (don’t worry, that’s not an allusion to suicide)

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