My biggest complaint with this site and the PFS Foundation is the secrecy involved behind the scenes in trying to figure out what is going on with our bodies and how to fix us. After over ten years with PFS I still have very little idea what the leading theories on the causes of our illness are. The Italian study seemed to provide the most insight with changes in neurosteroid levels and pudental nerve damage. Yes we need hard scientific data but it only helps if the cure comes in my lifetime.
The studies do not provide theories on why/what mechanism caused the neurosteroid levels to change or how to correct them or how to correct pudental nerve damage. It is probably beyond the scope of this site and maybe even the foundation, but in a perfect world we should like to see a world class expert hired to review all of the studies and give an opinion on root cause and possible path to fix said root causes.
We are all impatient we the slow progress on the scientific front. To get research done, papers written, peer reviewed, and published takes years, and we are just now scratching the surface. It’s like trying to cure cancer on a shoestring budget. The Italians seem to be the only ones making any headway for us. I’m glad the foundation is focusing funding on them now. I think the research and its objectives should be more open so that can all understand what theories are being investigated, what the roadmap to finding a cure is. If people knew more of what was going on they would be more motivated to donate,
We have all tried to make the best of our lives with pfs which is why this site has fallen into disuse. People have had to accept that life moves on with or without a cure. If the foundation or an independent expert were to make recommendations on things to try to cure us people would be lining up around the block to try it. People have been experimenting for years with everything under the stars to cure themselves based on little more than Google searches and charletans like CDnuts for advice.
Yes we need hard science but we also need to be informed. Awor used to speculate on what he thought was the cause of our problems, he no longer does that which is ok. But how about if he or someone else we hire examine the studies and break the data down to a level a non medical person like myself can understand. To this day I have seen very little discussion on this site about the Italian study or what our next steps will or should be.