Just want throw in my two cents here - I completely agree with the post above about supporting the research. Just want to say a few things about the PFS Foundation’s work vs the PFS Network’s. I have zero bias and personally support the research that I believe will achieve our goal the quickest - ultimately, I support the PFS Network as I believe their work is superior to the Foundation’s.
The biggest flaw I see with Melcangi’s work is that it’s not underpinned by any coherent theory which can account for all of the symptoms. In fact, Melcangi has often ignored certain symptoms simply because they don’t fit into his theory regarding neurosteroids.
For example, severe physical changes, which can’t plausibly be explained by changes to neurosteroids are not accounted for. I have extremely loose skin, muscle loss, facial changes, a redistribution of subcutaneous fat, bone loss, etc. which couldn’t be attributed to just neurosteroid changes.
Also, Melcangi’s work involves feeding rats finasteride rather than studying affected tissue of PFS patients. This is a severely flawed approach as we know on-drug side effects does not equal post-finasteride syndrome.
Melcangi’s explanation that one must first complete a certain amount of work in order to be able to investigate human tissue reads as more of an excuse than a legitimate reason. Due simply to the fact that the PFS Network are currently studying affected patient tissue from the scrotum.
The PFS Network’s research is multidisciplinary, with leading andrologists, prostate cancer researchers, and endocrinologists working in tandem to uncover the driving pathomechanisms of the disease. The one researcher, Dr. Alfonso Urbanucci, is a world class prostate cancer researcher was published in Cell. The other is Dr. Nadine Hornig, who specializes in the androgen receptor. Their work involves the utilization of next generation sequencing, to investigate changes to the chromatin landscape in the androgen receptor region, as well as possible predisposing genetic factors. Their work is also endorsed by Mohit Khera, who published the Baylor study, and is underpinned by a comprehensive theory that can account for all of the symptoms. This, to me, is extremely important when investigating the disease, rather than investigating individual symptoms.
I initially was donating to the foundation. I extensively did research on both organizations when I first got this last year - speaking to both the members of the network and foundation, reviewing their methodologies, understanding their theories and approach, and I personally saw the PFS Network as being superior. Their theory, which is covered in a very thorough scientific review written by one of the members really accounts for the vast range of symptoms.
Here’s the paper - https://paper.pfsnetwork.org/pdf/Post_Androgen_Deprivation_Syndrome.pdf