I saw this posted over at the Italian forum, so thought I’d share this (translated) post regarding a group of PFS sufferers who had a 2 hour long conference with Melcangi. Hope mods don’t censor this for it due to it being copied from ‘another forum’ or the like…
Thought users here would be interested to read this:
" Dear Forum Users,
with this post I share with all of you what emerged from the meeting between us patients, who were about 30 people + 10 in connection via skype, and Prof. Melcangi Roberto, who has been studying PFS for years and has done several publications on the subject.
The first part of the meeting Prof. Melcangi exposed the state of the art on PFS, which I have already extensively exposed in this post .
The news he shared with us concerns the observations on stool samples collected in 2019 to evaluate the alterations of the microbiome. In ALL 23 donors - all selected PFS patients - there are alterations divided into two bands: medium and strong. He could not tell us more details, but surely this is another important aspect that characterizes the PFS. The publication of this study is expected by summer 2020.
The second part of the meeting gave us the opportunity to confront the Professor, asking him questions for almost two hours. I do not report them for obvious reasons, however I think it was the first occasion to have a direct confrontation with the person, I would say, the most expert in the world on PFS.
Finally, the meeting ended with a proposal by the Finasteride Victims Association to all children - patients: thus supporting and creating the economic basis for an experimental pre-clinical study aimed at treating rats affected by PFS with the neurosteroid Allopregnanolone. In fact, as has emerged from research, all PFS patients have low levels of this important neurosteroid, therefore its administration could cause all or part of the symptoms to regress.
The research will examine the following parameters in rats pre and post treatment with the steroid Allopregnanolone:
- Intestinal population
- Analysis of gene expression
The experimentation would be conducted at the Neuroendocrinology laboratory directed by Prof. Roberto Cosimo Melcangi of the Department of Famacological and Biomolecular Sciences-University of Milan.
Financial support for the project will be given to 50% by a sponsor of the Association and the other half by the AVF itself. The Finasteride Victims Association therefore intends to officially start a national fundraiser to finance this important project at 50%.
It is superfluous to underline that, given the problematic nature of the PFS and the serious situations it involves in people, a large participation by users of this forum would be desirable, in order to create the conditions for this important experimentation to be carried out, with the prospect that another will follow on us.
I remain available for any questions."