Upcoming Melcangi study

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:

  • Neurosteroids
  • Neurotransmitters
  • 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."

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Thanks for this orthogs. Anything positive is always appreciated :pray:

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I would sign up today.

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Is there any way any of us can go to a lab and repeat the microbiome test he used (I.e. can you share a form / instructions)? I’d be very curious to test my microbiome damage as I’ve always said, my stools/bowels are quite significantly altered.

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How can I reach this doctor and how can he help find a solution?

Did you get an answer?

No sir

This sounds promising…

The biggest issue with this proposed study is the lack of an animal model for PFS. When Melcangi says he plans on ‘giving rats PFS’, how does he intend to do so? I mean, we still don’t know what PFS exactly is on the cellular level. This is a burning question I have.

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I think the fact they have shown seemingly long effects in term on penile structure, erectile function and neurosteroids is a good sign. No animal model is perfect, it takes a lot of time to work out how well the animal models reflect human disease.

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Misconstruing pathological changes caused by finasteride with PFS is a huge concern.

A similar line of rat studies was funded by a wealthy parent of an accutane suicide victim and led to neither treatments, nor a clear understanding, of PAS.

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@Dubya_B interdasting, link us the study dude?

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Remember that Accutane/Isotretinoin/13-cis retinoic acid refer to the same thing:

O’Reilly, Kally C., Simon Trent, Sarah J. Bailey, and Michelle A. Lane. “13-Cis-Retinoic Acid Alters Intracellular Serotonin, Increases 5-HT1A Receptor, and Serotonin Reuptake Transporter Levels in Vitro.” Experimental Biology and Medicine (Maywood, N.J.) 232, no. 9 (October 2007): 1195–1203.

O’Reilly, Kally C., Jason Shumake, Sarah J. Bailey, F. Gonzalez-Lima, and Michelle A. Lane. “Chronic 13-Cis-Retinoic Acid Administration Disrupts Network Interactions between the Raphe Nuclei and the Hippocampal System in Young Adult Mice.” European Journal of Pharmacology 605, no. 1–3 (March 1, 2009): 68–77.

Drew, C. J. G., K. C. O’Reilly, M. A. Lane, and S. J. Bailey. “Chronic Administration of 13-Cis-Retinoic Acid Does Not Alter the Number of Serotoninergic Neurons in the Mouse Raphe Nuclei.Neuroscience 172 (January 13, 2011): 66–73.

Bremner, J. Douglas, Negar Fani, Ali Ashraf, John R. Votaw, Marijn E. Brummer, Thomas Cummins, Viola Vaccarino, et al. “Functional Brain Imaging Alterations in Acne Patients Treated With Isotretinoin.” American Journal of Psychiatry , May 1, 2005.

So, they found that Accutane can generally lead to what can be considered pathological changes in mice and humans. Of note, development of depressive symptoms wasn’t significant in the brain imaging study.

How can one say these changes, or the observed degree of changes, are what underlies to the severe and/or persistent mental/neurological symptoms.

The majority of people who take the drug only report dryness as a side effect.

I think they can be safely assumed to be studies of asymptomatic organisms. Absolutely not equivalent to a state of PAS.

How many people here took finasteride for years without life-altering symptoms of PFS?
Quite a few.

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Great work guys! Dr M has been amazing at digging into PFS and very quick with his results. I only hope he begins to look into the AR gene as well.

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I am also impressed by Dr. Melcangi’s work.

I know there have been certain criticism of some his protocols & conclusions. Regardless, he seems to be our best chance at getting any relevant scientific studies regarding PFS.

If we could have 2-3 more professors conducting such smaller-scoped studies to be released on a faster time-scale, that seems to be the most feasible pathway moving forward.

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There is a big difference between dedication (Like Melcangi), and „ofcourse i will research your problem if you pay me enough money“ (Some other researchers)…Whether i agree with his research methods or not, is a different story… its good to know, that he’s planning for next research, although money is not even guaranteed yet. I hope more researchers would follow suit.

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It is coming off it that led to my ruin. The chronic dryness has affected everything and I am a shell of a man in constant nerve pain amongst much else. The fact there is no specialist who can offer any solutions leaves me in 24 hour despair.

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I’ve read many articles where researchers and scientists use Allopregnanolone on rats. Why cant we get our hands on Allopregnenalone?

You can technically buy some. I believe @silentpain89 procured some a while back.

Seriously? And how was Siletpain89’s experience? How do you source that?