Are there any people who are seeing one of the doctors doing the PFS clinical studies in Harvard, Baylor or Italy? Any news about their findings would be great because I see many people theorizing about our condition and trying various methods in an attempt to find a cure. I tried many things which only made me worse, and I still want to try water fast etc. too, but I think at this point it’s probably best to wait and see the results of the current researches… To be honest I believe that our condition is final and can not be cured, especially for those of us that saw no improvement or got worse in 5+ years, as our brain + organs + endocrine system are damaged beyond repair, but I still rather not do anything to make matters worse.
From my own limited understanding, I thought medical research Dr’s tend not to have patient clinics and stay within their research/university setting. Although, I’ve come across 1 or 2 that are university professors and also have small clinics in the private/public sector. I don’t believe PFS is final because there are guys ( mariovitali ) who have recovered after 5-10 years of suffering with PFS, their condition clearly reversed despite having full blown symptoms.
Mario has recovered but he is not cured.
There are a few people who say they have recovered although once in a while one of them will say: well i still have xxxxx little problem…but nothing else.
So its hard to say
Even tryingnottoworry came back saying he is 95% and not 100%
%95 sounds amazing, it would be a miracle if I recovered that much. I’ll call and see if I can get an appointment from the Italian professor working on the research. pfsfoundation.org/news/post- … _melcangi/
I talked to Prof. Melcangi and he said their main target is to prove to other doctors that PFS is real… So I guess it’ll take a long time till they get to the finding a cure phase.