PVDL is absolutely right on this. People sarcastically calling him a messiah because he’s advocating on research of PFS by world leading experts is ridiculous. The only people who need calling out are the ones who play pretend Dr, falsely claiming they are the ones with a cure.
The reality is that we will not get to the bottom of these issues hypothesizing amongst ourselves in front of our computer screens trying to be armchair Drs. It’s why the studies done by world leading experts at Baylor and Harvard are so important and our only way to getting to the heart of the issue. Doing our most to get those studies completed is our best hope of finding a cure. I just wish more people on this board would start putting their energy behind that and stop chasing delusional pipe dreams in other avenues.
For years myself and thousands on here have been tormented by pfs without a single advocate or dr in our corner. Now a foundation has been created by parents of sons who suffered from pfs to finally advocate and get studies done on our behalf, and how did we respond as a group. The reaction of many people on this board has been to put it down, show zero support and be negative towards it. What the hell are you people thinking!! If there are those of you out there that don’t agree with op, fine, just move on to the next thread. Why come onto this thread and even bother commenting. The sarcastic posts with name calling and bickering is pointless.
To those saying that there’s no harm in trying your own home brew ideas found on these boards made up by wannabe dr’s, your wrong. Do you know how many countless men on here, myself included have worse symptoms after trying suggestions found on these pages. Every suggestion for a drug or herb I’ve found on these boards over the last 6 years that I’ve been here have made me worse.