I don’t get it. After years of trying to get hard scientific data on pfs we are finally getting some hard scientific data in. Two of the three funded studies have been completed with the Milan University study published only weeks ago. I haven’t seen a single comment discussing the study. awor hasn’t posted in a year and a half. Mew hasn’t posted in 4 months. I’ve been told by another member that many people have gravitated to other sites to discuss pfs. The one I was referred to Ray Peat seemed to be mostly focused on people experimenting with different substances to try to heal themselves. Sorry I tried that for years and it either didn’t work or made me worse. Is there another message board where people are discussing the study results?
Im glad the pfs foundation still seems to be active, that gives me some hope.
It seems that the mods are content to let this die. Posts no longer show up when you publish them, they first need to be approved by the mods. But the mods aren’t active.
This is a tremendous archive of people’s efforts to find something that helps, and it would be a shame to see it end.
I’m still here guys, apologies for not checking in or posting as often these days. Certainly with various things in play as we are all well aware, for various reasons I have decided to not participate in as many discussions as in the past. In addition I don’t have as much time these days as I used to in the past… however, I am still working in the background. Things may move a bit more slowly in terms of new posts being approved but rest assured they do get reviewed. Appreciate your ongoing support over the years.
Thanks for responding mew. I guess I was just venting my frustrations when I posted this. I did read the Milan study and it seems that they found quite a few biological markers that were different in the pfs patients than the control group. However they didn’t try to postulate what was the root cause for these changes or what further tests they would recommend to try to find the root cause. We (obviously) need to find the root cause otherwise the the studies are no help. Once the final study is complete I’m hoping the Foundation will hire someone to examine the three studies and at least take a educated guess on the root cause.
Part of my frustration stems from the fact that the Foundation does not verbalize what they think the path forward is so we, the pfs community, have to have the patience of a saint waiting and waiting for progress to happen. After 10 years of waiting I guess I’m used to it. It would really help me at least if you or awor or the Foundation or someone who knows what the heck is going on would post some type of regular (maybe annual) report on where we are and where we think we need to go next. That would give people hope and motivate more donations to the foundation.
At this point the PFS Foundation is leading the charge on research and is in the best position to keep people abreast of developments. I believe they do put out quarterly and annual updates.
Thanks for the response. I suggest you lower the number of posts needed to automatically post without admin approval. I get that if you are in some sort of legal situation, you don’t want to necessarily put anything else out there, but (as a lawyer myself) I don’t see any reason why you can’t let other people post.
Thanks! I was very touched by his story and very impressed by his eloquence. I also strongly identify with most of what he has written. I was wondering how he is doing now and I am glad to hear it’s Mew’s. I feel the content should somehow be resurrected and posted somewhere (here?) because it is very well-written and informative but I guess that’s up to him to do.
I am in contact with him. He has just moved on, trying to cope with the cards which were dealt to him. I can ask him if he would consider putting it back online again.
