Old post, but I agree.
It’s naive to think community experimentation can’t solve the problem.
We all know “proven”, “scientific” mechanistic models and double-blind clinical trials are the only “real” science.
That’s why we all took finasteride
I’m putting my money on the current on-going human experiments… driven by highly motivated people doing everything possible to get out of this hell.
The foundarion backed mechanistic / animal studies are incredibly powerful.
Like the observarion that AR is upregulated in PFS patients.
But… that has a feedback loop with the forum driven human trials.
It’s two sides to the same coin, but the member-driven science / experimentation is ultimately what’s lead to so many success stories.
My point being… IMO, it’s naive to suggest either side is “better”.
Ultimately, it’s a false dichotomy. We’re all just here doing what we can to improve our lives.
Mainstream medical treatment certainly isn’t the solution, ane the foundation research is far far off from human trials.
As far as I’m concerned, naive or not, member based human experimentation may be the best chance we’ve got right now.
So, we might as well embrace it. Obviously it’s not SUCH a bad idea, otherwise the mods would ban all such efforts.
As an organization, actively supporting human experimentation without proper disclosure / signed waivers / authorization / licensing is a liability.
But, it still happens here every day, for better or for worse. It’s not banned, and it COULD be.
Point is, we all know it’s essential. Nobody wants anyone to get worse… but the truth is, we’re all hurt. We’re all slowly losing our lives.
Instead of shitting on those bold enough to experiment, we should celebrate them. They are an essential part of the process.
Unfortunately sometimes they were ignorant, ill-informed, and mistaken.
It sucks that some people fall… really seriously take a fall, sometimes even to an early grave.
These are very serious, potentially life-altering decisions people are making. So… no I don’t think they should be taken lightly.
In fact, I think we should have a better system for tracking / informing / managing these community driven trials.
They are happening anyway, so you might as well collect the data in a safer, more informed, structured way.
Using a crowd-sourced clinical trial platform could help. There was one a while ago called Genomera, but I’m not sure they’re still around.
Anyways, thank you to all the people who have helped make progress toward a PFS solution, both formal academics and humans like you.
I’m a fellow PFS sufferer / fellow human just sharing my thoughts, nothing more.