How can we get scientists to do research?

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pssdperson
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How can we get scientists to do research?

Unread post by pssdperson »

The finasteride/ PFS sufferers have a well established organization and have managed to get a lot of research, they manage to raise money to get the research going, we should really also be looking into how to get research done. We NEED research.

The PFS guys have done various research where their gene expression is studies, vascular structure, etc… they even have a brain bank where they store brains of PFS suffers who have passed.

Yet we don’t have almost any research. If we don’t do something no one’s gonna do anything. We need awareness, research, medical validation and with enough research maybe lawsuits.

How can we manage to get research? Should we contact scientists? Any ideas?
JLo22
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Re: How can we get scientists to do research?

Unread post by JLo22 »

Did you already donate to the PSSD GoFundMe for Melcangi research in Milan Italy?
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anacleta
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Re: How can we get scientists to do research?

Unread post by anacleta »

Some time ago I was also of the opinion that "we need to find interested researchers", but this is not the point at all, but the lack of funding is.

There are more teams of researchers, in various countries, who are interested in PSSD and have ideas about studies to undertake but lack the money to start them or carry them out.

Researchers do not like to shout the details of their study ideas to the four winds, they do it if they have a little more confidence.

Some things are at stake:

- Melcangi's team, in Milan, Italy, exploring the persistent alterations caused by SSRIs on neurosteroids and other things in an animal model. The same team has been involved in research into the Post-Finasteride Syndrome for years and is looking at the parallels between the two syndromes.

The fundraiser is here (the first 30,000 euros have already been used) You can also read about the direction of this research here.

https://www.gofundme.com/f/27l8qmes5c

- Some researchers at the prestigious Mario Negri Institute for Pharmacological Research (also in Milan) are already involved and interested, but some study projects are at a standstill due to lack of funding. Anyone who would be willing to donate anything close to $30,000 and wants to know more about the study ideas should ask me for the researchers' contact details.

- Prof. D. Healy is aware of several study ideas in the pipeline by researchers in different countries, again what is missing is money. To find out more, contact him via Rxisk.org

The Canadian and German guys probably know other teams of researchers who already have study ideas.
GIXXER
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Re: How can we get scientists to do research?

Unread post by GIXXER »

I find the PFS suffers are all working together as a team to accomplish their goals.

PSSD suffers not so much. It seems we're all divided into different groups which spreads our efforts thin, and really doesn't do much to finding a cure. We have some looking for a cure themselves, some spreading awareness, and doing activism. Others want to complain about PSSD, every other day someone in posting how they crashed from something.

Until we're ALL on the same page, with a clear plan, objectives and full participation of everyone that suffers we will never find a cure.
Numbtomind 2
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Re: How can we get scientists to do research?

Unread post by Numbtomind 2 »

I've already donated a undisclosed amount to rxisk prize found back in 19'. Ended up leaving my Job end of 19' for severe pain from pssd. The cognitive and chronic fatigue combined was the nail in the coffin.

It's been a grueling 3+ years , I'm still alive and hoping something changes in this community for everyone. I think people desvere answers
75mg Clomipramine. june-july 2018
(Anxiety/Ocd)

Current symtoms I'm experiencing.
Emotional numbness, Pleasurless activities, Complete sexual system shutdown.
pssdperson
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Re: How can we get scientists to do research?

Unread post by pssdperson »

anacleta wrote: Fri Apr 08, 2022 5:47 pm

The fundraiser is here (the first 30,000 euros have already been used) You can also read about the direction of this research here.

https://www.gofundme.com/f/27l8qmes5c
I have a question about this study, I saw that a study by melcangi was already published over the summer regarding PSSD and neurosteroids, but i then found there’s still a fundraiser, is the fundraiser for the second part of the study?
pssdperson
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Re: How can we get scientists to do research?

Unread post by pssdperson »

anacleta wrote: Fri Apr 08, 2022 5:47 pm Some time ago I was also of the opinion that "we need to find interested researchers", but this is not the point at all, but the lack of funding is.

There are more teams of researchers, in various countries, who are interested in PSSD and have ideas about studies to undertake but lack the money to start them or carry them out.
So why don’t we talk with those scientists, chose the best idea and then create a fundraiser? Or should we first gather money and then chose the project?

I think people don’t donate because we aren’t well organized. I’ve seen some people in Reddit say they have a lot of money they could donate but don’t know where to donate it.

Could we make an association purely dedicated to PSSD fundraising for research?
pssdperson
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Re: How can we get scientists to do research?

Unread post by pssdperson »

GIXXER wrote: Fri Apr 08, 2022 6:45 pm I find the PFS suffers are all working together as a team to accomplish their goals.

PSSD suffers not so much. It seems we're all divided into different groups which spreads our efforts thin, and really doesn't do much to finding a cure. We have some looking for a cure themselves, some spreading awareness, and doing activism. Others want to complain about PSSD, every other day someone in posting how they crashed from something.

Until we're ALL on the same page, with a clear plan, objectives and full participation of everyone that suffers we will never find a cure.
Yes I agree, the PFS guys also have a great team of people who are deeply involved in getting research, fundraising, activism, podcasts, etc… I think it would help to have a site as developed as theirs and a group of people who help organize and tell others about research / fundraising, cause we aren’t well organized at all. We need to organize ourselves well.
pssdperson
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Re: How can we get scientists to do research?

Unread post by pssdperson »

Numbtomind 2 wrote: Fri Apr 08, 2022 10:34 pm I've already donated a undisclosed amount to rxisk prize found back in 19'.
I wish the Rxisk prize was used for research rather than as a prize. Cause that’s not how research works. Scientists need money to be able to do research, they won’t waste time and resources to research PSSD of the only way they’ll get compensation is if they create a cure. Maybe they make amazing discoveries but a cure isn’t possible for them to create.

In all honesty all the Rxisk prize money should go to funding research but I’m not sure if that’s even possible
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anacleta
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Re: How can we get scientists to do research?

Unread post by anacleta »

pssdperson wrote: Sat Apr 09, 2022 1:30 am
anacleta wrote: Fri Apr 08, 2022 5:47 pm

The fundraiser is here (the first 30,000 euros have already been used) You can also read about the direction of this research here.

https://www.gofundme.com/f/27l8qmes5c
I have a question about this study, I saw that a study by melcangi was already published over the summer regarding PSSD and neurosteroids, but i then found there’s still a fundraiser, is the fundraiser for the second part of the study?
Yes, the research is going on

Update from the PSSD community Fundraising for the University of Milan research team:

"In order to thank all those who have donated so far, we are publishing this update on Melcangi's research, reminding you that there is no real upper threshold to reach and that every contribution is important to the continuation of PSSD research."

Recent observations obtained by the research unit coordinated by Prof. R.C. Melcangi of the University of Milan, have shown that treatment with paroxetine in an animal model is able to modify the synthesis of steroids in the brain ( i.e. the neurosteroidogenesis). In particular, and this is particularly important for PSSD, drug suspension is able to further modify the steroidogenic process, inducing a persistent decrease in neurosteroid levels (Giatti et al., Psychoneuroendocrinology, 2021). This is interesting as neurosteroids, being important regulators of brain function, could therefore be responsible for many side effects found in PSSD. Furthermore, as we have demonstrated in an animal model, an alteration of neurosteroidogenesis is also found in the post-finasteride syndrome (PFS) (Giatti et al., Neuroendocrinology, 2016). These observations support our hypothesis (Giatti et al., Endocrine, 2018), namely that the pathological mechanisms that induce PSSD and PFS may be similar.

To further corroborate this hypothesis and to define in detail the mechanisms involved in the pathogenesis of PSSD, we intend to evaluate:

1) whether paroxetine is able to interact, like finasteride (Giatti et al., J. Med. Chem., 2021), with other molecules beyond its own molecular target (i.e., identification of off-targets), suggesting alternative mechanisms of action;

2) whether in an animal model, treatment with paroxetine, as well as its suspension, are able to alter the gut microbiota, as occurs for finasteride (Diviccaro et al., Psychoneuroendocrinology, 2019), and / or gut steroidogenesis (Diviccaro et al., J Steroid Biochem Mol Biol. 2020)

3) whether, as in PSSD patients, also in the animal model treated with paroxetine a persistent alteration of sexual function can be found and to define the pathological mechanisms involved.

These observations will be important not only to clarify the pathophysiological mechanisms of PSSD but also to define further diagnostic criteria and identify possible therapeutic strategies.
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