PSSD in 2021 | Melcangi Study Info, Future Research and Activism

This is a place to post research you have done on the topic along with your conclusions.
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Bear
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PSSD in 2021 | Melcangi Study Info, Future Research and Activism

Unread post by Bear »

Happy New Year, everybody!

I would like to discuss with you the very exciting news of an upcoming study in the pipeline. You may have heard of this study, and the movement to collect enough funds to allow it to go forward on the recent forum thread, or the PSSD Support Discord server where it all started. Some important details have not been clearly conveyed, so I would like to clarify what the study entails, who will be conducting it, and the specifics of how it will be funded.

This research will be undertaken by a team led by Professor Roberto Cosimo Melcangi of the Department of Pharmacological and Biomolecular Sciences at the University of Milan. The study is entitled Paroxetine and Neurosteroidogenesis and will focus on the concentrations of various steroid molecules throughout different parts of the brain and in plasma. It proposes to examine one particular aspect of SSRI use that may contribute to the aetiology of our condition. It does not claim to search for curative treatments, and it is crucial that the community properly understands this so that invalid criticisms of the professor’s work are not purveyed.

The study will be comprised of two main parts: Part 1 will be concerned with the effects of paroxetine on the concentration of different steroid molecules; Part 2 will aim to explain the results of Part 1 and uncover any underlying causative factors – for instance, the expression of certain enzymes and receptors in the brain, as well as neuronal mitochondrial function.

If you wish to view the complete study outline, you can contact the Italian team by sending them an email at info@postssrisyndrome.org. This will detail the two phases of research in full. By Melcangi’s own request, we have reserved the viewing rights of this information only for those who seek it out.

Who is Prof. Melcangi?

Professor Melcangi is a neuroendocrinologist with over three decades of experience in clinical research (see: Curriculum Vitae [in Italian], publications and awards), who has previously been funded by the PFS community to investigate the implications of finasteride use on microbiotal, steroidal, and epigenetic markers. He is highly distinguished in his field and has a body of work frequently cited within the academic community. This is supported by metrics such as his h-index [1], and ResearchGate score [2]; 54 (48 excluding self-citations) and 44.39 (97.5th percentile), respectively.

Some of his publications which may be of interest include:

Altered methylation pattern of the SRD5A2 gene in the cerebrospinal fluid of post-finasteride patients: a pilot study, Alterations of gut microbiota composition in post-finasteride patients: a pilot study, Post-finasteride syndrome: An emerging clinical problem, Neuroactive steroid levels and psychiatric and andrological features in post-finasteride patients

Costs, GoFundMe and donation options

Last month, an Italian user, Infiniteway, posted about a GoFundMe campaign to receive individual donations to transfer as a single, large donation to the university.

Initially, the proposed cost of the first stage was established to be 18k euro – an estimate of the amount necessary to ensure that all the requisite laboratory resources could be secured. This, however, was adjusted to 10k to set a more achievable benchmark for the PSSD community. The 10k target represents the bare minimum that would allow the research to proceed, and thus if the total amount received reaches the 10k target, a new GoFundMe page will be created to further optimise the first phase of research. If the 10k target of the current/first GoFundMe page is not met, the amount raised will be refunded fully to all who have contributed. The cost of phase 2 of the study will largely depend on the results of the first stage, and as such is yet to be advised.

Since the inception of the GoFundMe and its promotion throughout the broader PSSD community, some users have accused its creator of fraud. While the backlash seems to have settled some, we understand the misgivings some members may have, as outside of the Italian group the campaign organiser, Francesco Mazzi, has not previously been active on the forum, subreddit or Discord servers. Moreover, the moderation team for each of these media can attest that scams and questionable appeals for the community’s money are indeed quite common.

To this end, we believe it would be best to transfer the ten thousand as soon as we reach the first target, to help assure our potential donors that their money is being used in good faith. A new GoFundMe will be started to maximise the scope of the study shortly thereafter, covering any additional investments that could be made to favour research outcomes. Finally, a third fundraiser will be uploaded to fund the second part of the study (cost TBA).

Another option if you are wanting to make a donation of 3000 euro or over is to send it directly to the university yourself. All payments above this threshold will be taxed at the lowest possible rate of 10%, whereas anything below will be taxed at 30%. For this reason, it is greatly preferable to collect smaller donations together to send as a single fee contribution, so that taxation is kept to a minimum. If you are interested in going this route, feel free to reach out over private messaging with me, or with the Italian group through the email provided above.

If there is sufficient demand for it, we are also willing to reach out to trusted individuals such as the forum leaders to ask for their assistance in collecting the donations. Note, however, that we will only consider going down this path if we are certain it will lead to a more successful campaign. There is a process by which this can be done anonymously that will be elaborated on further should it be requested.

With that being said, Francesco is in close contact with several Italian users, some of whom have been involved in the fundraiser, and is readily identifiable by these people. GoFundMe also requires legal documentation from its campaign organisers, so we hope that users feel that there is adequate reason to trust that there no hidden intentions at work.

Discord pledgers and other prospective donors

Earlier in the year, I began collecting pledges from those active on the PSSD Support Discord server, asking that they put aside money they are certain can be contributed to the cause when the appropriate time comes. In return, we would provide transparency for the process – especially in our dealing with the money. This amassed several thousand in promised donations, and several thousand more in non-committal ‘maybe’ pledges. After the community has been given some time to digest this, I will begin checking in with our pledgers to see if they are willing to go forward, as well as the latter ‘maybe’ group to hear their thoughts on our proposed course of action.

To do our best work in making this movement a success, we cannot afford to ostracise any potential donor group, so if you are curious about any aspect of this project, we encourage you to raise any questions that you may have.

Final thoughts + future activism

The biomedical literature relating to the deleterious effects of SSRIs post-withdrawal is severely lacking, so it is our belief that a new study may assist in generating interest towards the issue. We are hopeful that by encouraging involvement within the community, we may raise the bar for what we believe we can achieve. Rather than coming here only to commiserate or theorise amongst ourselves, we urge everybody to take an active part in driving the progression of our community. Making this issue clinically substantiated will drastically expand our options in receiving help from the medical community and acknowledgement from the public at large, as well as offering insight into the biological systems that may be disrupted in the common PSSD sufferer. As studies are invaluable inventory for backing our issue scientifically, they may also prove useful for possible legal and public awareness matters.

As 2021 is freshly upon us, we hope that entering this new chapter of our lives will bring the change we so direly need to make our voices heard. I personally would like to start a more involved conversation about online activism and how we can present a credible case online. I would also love to see coordinated efforts in writing to news outlets and public figures, as well as further support and growth of the PSSD, Drugs and Rock ‘n’ Roll YouTube channel.

Thanks for reading – here’s to a prosperous New Year!

Bear

Notes

1. H-index - a function of output and recognition; in a series of most to least cited publications, this is the last place in the series in which the number of citations is equal to or greater than its numerical placing within the series. Originally devised in 2005, its author concluded that an h-index of 40+ after 20 years of research would be considered “outstanding”, likely belonging only to researchers of high-ranking universities and major research laboratories [further reading: An index to quantify an individual's scientific research output])

2. RG score - a figure used to assess the amount of engagement a researcher has with the userbase of ResearchGate.net)
naiverat
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Re: PSSD in 2021 | Melcangi Study Info, Future Research and Activism

Unread post by naiverat »

Great post, Bear.

Research is invaluable to the community — a community currently reliant upon vague untested theory and risky trial-and-error treatment approaches.

We need answers.

Good to see the disparate PSSD communities coming together for the common good. Let’s make this happen.

Happy new year, all.
Fluoxetine Jan. '16 - Aug. 16'. Low libido, weak erections, CNS dysfunction, anhedonia

Windows on the following: Inositol, choline, NAC + Histidine, MSM, SJW, L-Arginine, Sildenafil, Naltrexone, boron
healing
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Re: PSSD in 2021 | Melcangi Study Info, Future Research and Activism

Unread post by healing »

^^^

Really great stuff, glad we're finally seeing progress on the clinical research front of PSSD. It's been over 30 years since SSRIs hit the market, which has left countless suffering for years without answers.

I implore the community to FULLY support this research effort; this is our best shot at legitimate research which will (hopefully) uncover the pathologies that underlie this terrible condition. It's now or never, let's finally get some answers!!!
Lexapro 2016. Sexual, emotional, and cognitive symptoms.

Email: healingpssd1@gmail.com
Kiliantkt
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Re: PSSD in 2021 | Melcangi Study Info, Future Research and Activism

Unread post by Kiliantkt »

Awesome posts, thanks for everything, looking forward to be able to help !!
PE, ED, Dead Libido, Loss of erogenous sensation, Ejaculatory anhedonia, Burning at ejaculation
General Anhedonia
Severe Blunted Emotions
SSRI & SNRI: 2011-2019
naiverat
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Re: PSSD in 2021 | Melcangi Study Info, Future Research and Activism

Unread post by naiverat »

Nice job, guys. Looks like the community is rallying and we are making progress toward funding this.
Fluoxetine Jan. '16 - Aug. 16'. Low libido, weak erections, CNS dysfunction, anhedonia

Windows on the following: Inositol, choline, NAC + Histidine, MSM, SJW, L-Arginine, Sildenafil, Naltrexone, boron
Kiliantkt
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Joined: Mon Jul 27, 2020 10:19 am
Location: Geneva, Switzerland
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Re: PSSD in 2021 | Melcangi Study Info, Future Research and Activism

Unread post by Kiliantkt »

Almost 9400, almost there for Round 1 ;)
PE, ED, Dead Libido, Loss of erogenous sensation, Ejaculatory anhedonia, Burning at ejaculation
General Anhedonia
Severe Blunted Emotions
SSRI & SNRI: 2011-2019
JLo22
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Re: PSSD in 2021 | Melcangi Study Info, Future Research and Activism

Unread post by JLo22 »

$12,290 has been raised to our Gofundme page for Melcangi Research Group.
heymartinn
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Re: PSSD in 2021 | Melcangi Study Info, Future Research and Activism

Unread post by heymartinn »

Guys, if you have some additional amount of money that you're are willing to donate - now is a great opportunity to do it. A member of this community is willing to double the amount that we'll gather throughout the week, up to 4k euros. That would be enough to reach the goal and get this study going. I think it's the best investment that anyone could make at the moment to get closer to a therapeutic approach in treating this disease. Let other people know, let's get some traction!
Markc1113
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Re: PSSD in 2021 | Melcangi Study Info, Future Research and Activism

Unread post by Markc1113 »

I will be donating
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