Northern_Star wrote: ↑Fri Jan 14, 2022 7:10 am
cdraham wrote: ↑Thu Jan 13, 2022 2:12 pm
Honestly propeciahelp mods did more damage to the community than they helped. When people believe this stupid AR and epigenetic change theory, which is totally absurd, people tend to get stuck in a thought loop that there is no way out. Thats how suicides happen.
Just look at poor anhedonicape and other guys that thought they have some irreversible epigentic changes happened to them. they even went as far as trying out "demethylation treatments" like cancer drugs and stuff because some idiots constantly reinforced their ideas.
I am one of the admins of Propeciahelp. Your tone is unacceptable and your accusations are absurd.
The Propeciahelp team (in different compositions) was and is instrumental in organizing credible clinical research into our condition. Without the Propeciahelp team there would be no PFS Foundation, no research and very little awareness of PFS. To say that we did more damage to the community is absurd. Because of propeciahelp there is a community in the first place.
We know from the anecdotes on our forum that people suffer from PFS for years and years without returning to their pre-Fin levels. Such lasting changes can only be explained by fundamental changes in how the body works. Epigenetic changes would cause such fundamental changes. Maybe, but very unlikely, it turns out that these fundamental changes are caused by something else. But to say theories based on epigenetic changes are "totally absurd", when epigenetic changes would explain the phenomena we observe in patients, is completely unfounded.
Significant changes in androgen receptor expressions in penile tissue of PFS patients have been found in two separate clinical studies. That there is something going on on the AR level is an established fact. Calling theories based on these facts "totally absurd" is ignoring these facts. We have discussed the existing clinical research and that the AR is possibly a driving factor of this disease with leading scientists, including an AR specialist in the field of refrectionary prostate cancer (where the AR is also a driving factor) who has published research in leading journals and the director of large microbiology center. The research we are currently fundraising for will be lead by a scientist who has recently diagnosed a molecular level androgen insensitivity driven by epigenetics, who will be supported by her department head, a leading geneticist who has published groundbreaking research in leading journals. We have discussed our ideas with all those leading experts who find these ideas not only plausible but that research following these ideas is also worth their support.
It is also worth noting that the original ideas surrounding AR expression and epigenetic changes were developed by Awor in 2010. Since then, multiple aspects of these ideas (such as changes to AR expression, neurosteroid levels and gene expression) have been confirmed in clinical studies.
Everyone can make up their mind whether they have faith in people with a track record in organizing research, developing ideas that hold up to research and who are supported by leading experts in the field, or whether they want to believe arguments from forum trolls that completely lack any expertise and are limited to "bullshit" and "totally absurd". You can drop all these "Big bombs", do all pubmed abstract discussions on forums and pretend to be a tough guy and expert (and it is obvious that you are neither), in the meantime we are busy to get actual research done that will help us better understand our condition and that holds up to scrutiny by people who know what they are doing.
With respect to dangerous treatments, the staff of Propeciahelp has always strongly discouraged experimental treatment in the absence of sufficient knowledge of this condition. We also do not think that our situation is irreversible in principle or hopeless. But the facts are the facts, we cannot help it if people view the facts differently to us.
First, epigenetic changes happen all the time. Take any disease and there will be tons of epigenetic changes.
Androgen receptors - yes these can be up/down regulated. But they did not get epigentically silenced by the drugs itself, its the inflammatory cytokines that down/upregulate this androgen receptor expression, including in the prostata and penile tissue:
"Because inflammatory changes have been associated with the diagnosis of BPH13 as well as increasing age,14 1 we investigated and found that tumor necrosis factor α (TNF-α), NF-κB, and IL-6 regulate DNMT1 and subsequent methylation of the SRD5A2 promoter region. In addition, we show that SRD5A2 promoter methylation and reduced protein expression are associated closely with increasing age in both human and mouse tissues."
"That there is something going on on the AR level is an established fact. " - Yes, I agree with that.
Microbiome change study of melcangi: I also agree with that one, at least with the results of it, dysbiosis. But his model and study design didn't really have anything to do with the reality of this syndrome. Its much better to take live PFS/PSSD guys and send their stool to any top microbiome analysis company and compare the results.Hint: you will always find the same pattern and dysbiosis, does not take a multiple thousand euro study on rats to come to these conclusions.
Youre trying to fundraise for those top level epigeneticists but what do you expect from these honestly? They find some single genes that are responsible for these diseases? Thats totally laughable and a waste of money. What even qualifies this awor guy to come up with some theory that is "confirmed by clinical studies"? Take my theory, its confirmed by clinical studies aswell. Im just as qualified as awor or whoever to put some theory out there. The difference is that me and several other guys already had windows of full function and results on our own system with this theory.
It does not take any expert in a field to see the research you are doing is completely going in the wrong direction. Even the study design of some of those studies is compeletely absurd and does not have anything to do with reality. It just takes some smart open minded guys who can do "Pubmed abstractions" and not believe everything someone with "expertise" or some kind of "leading expert in epigenetics" says. It just takes some critical thinking. user @MindChanger pretty much figured out these syndromes already.
I can give you a few more tips, look into autoimmune diseases and the gut. Measure stuff like Cd57, ANA, th1 and th2 cytokines, quinolinic acid and kynurenic acid. I have detailed labs and even doctors on my side that confirm my results.