Raising Money to Cure PSSD

[Youcanwin]

Hypothetically, if we could raise money to cure PSSD as an epigenetic illness - how much money would we need to fully fund enough research to understand and cure the condition?
10 million? 20 million?

[Northern_Star]

Nobody will be able to tell you that. You can only quantify the costs if you know every step of the way from today's almost complete lack of understanding to a full understanding of the condition. But if you knew the way already, you would already have that understanding. In science, taking a step can unlock the next step, but you will have no idea beforehand what that step will be and how many steps will follow. Without knowing how many steps and what steps will follow, you cannot quantify the costs. Could be anything from a few million to billions. Nobody knows as nobody can predict the future (i.e. how many and which steps the community will have to take).

I don't think it is productive to mull over questions like that. This will be a step-by-step process. And the most important part is to get going and then, you will see where the road takes you to. Unfortunately, nobody seems to take any meaningful steps to understand this condition and try to find some answers to the most glaring questions (1. Why are some people getting PSSD and others not? Is there a genetic/epigenetic predisposition? 2. What is "off" in the body of PSSD patients that may cause these symptoms, e.g. can we look into cells to see what is different compared to controls?).

[FindGoodNickname]

What are your plans?
Raising 10 mio and then hire scientists who work until the money is gone?

I guess it would make sense to find groups of scientists who might be interested in this.
But I have no experience whom we would have to ask.

[Northern_Star]

There is no way to raise €10m just like that, unless a member here is exceptionally wealthy and willing to donate such an amount.

But that is not necessary. At the beginning five digits or low six digits can be enough. It is important to raise awareness of this condition and to establish it is real. Given the importance of mental health and the huge number of patients that are treated with ADs, I believe - once this condition is properly established - it will be possible to access government grants as a source of funding.

What is important now, though, is to a) establish awareness of this condition among clinicians, scientists, public authorities and the general public (including patients who may suffer from persistent side effects without knowing that there is a name and a community for it), b) to generate clinical findings that show that this condition is real (ideally physical findings in PSSD patient tissue that cannot be easily explained away as "depression").

I know some groups and people are already trying to do that. But from the outside it seems that there is a lack of direction.

[JLo22]

Donating to our PSSD GOFUNDME PAGE is a nice start. We already donated over $30,000 Melcangi Research Group in Milan Italy within an 8 month period. The money helped with their latest research paper published a few weeks ago.

I constantly promote the GoFundMe on Twitter to reach a wider audience.

[FindGoodNickname]

Donating to our PSSD GOFUNDME PAGE is a nice start. We already donated over $30,000 Melcangi Research Group in Milan Italy within an 8 month period. The money helped with their latest research paper published a few weeks ago.

I constantly promote the GoFundMe on Twitter to reach a wider audience.

Thank you, I just donated.

[JLo22]

Great donation! Thank you.

I will send another donation by end of this month.

[Northern_Star]

Donating to our PSSD GOFUNDME PAGE is a nice start. We already donated over $30,000 Melcangi Research Group in Milan Italy within an 8 month period. The money helped with their latest research paper published a few weeks ago.

I constantly promote the GoFundMe on Twitter to reach a wider audience.

Yeah, it is a nice start that could be a launching pad for more comprehensive research going forward. Just don't place all your eggs in the Melcangi basket as Melcangi will only get you so far. That's what we learned from his PFS research.

As you know, Melcangi was very important to establish PFS research and as among the first scientists to contribute clinical findings in PFS patients in peer-reviewed journals, for which we are very grateful. But his later PFS research was increasingly just a stream of cheap studies probing various areas that were only loosely linked without answering some fundamental questions. He framed PFS as related to neurosteroids and 5ar but ignored symptoms frequently reported by patients that could not possibly be linked to neurosteroids/5ar and dismissed clinical findings that did not fit into his hypothesis. Findings, which have now be confirmed by other researchers. Any hypothesis should fit the facts not the other way around. Hence, some of us who are organizing PFS research are looking for research proposals that better acknowledge all the symptoms and clinical findings.

I can see similar problems potentially coming up in his PSSD research. A critical problem of PSSD, I think, is the definition of the condition. Is PSSD really just sexual dysfunction as the name suggests? Many PSSD patients report lots of additional problems from mental symptoms (e.g. anhedonia, increased anxiety and derealization) to additional sexual problems (e.g. genital numbness, penile atrophy) and physical problems (e.g. joint and muscle pain, muscle spasm, muscle loss, skin changes) and many more. Some of these are difficult to reconcile with a hypothesis focused on neurosteroids.

This research could be important to further establish PSSD in literature and I understand from personal experience how difficult it is to get research propoals. Melcangi is always full of ideas and proposes cheap studies that can be done quickly, which fells like nice progress. But I can only suggest to use these findings to get the opinions from more scientists for research going forward as a complex problem like this shouldn't depend on a single individual and his crew.

[JLo22]

Thank you for sharing.

Do you know other research groups that are currently researching PFS or PSSD so we can organize a fundraising?

More groups of research scientists is always a plus.

[Northern_Star]

Thank you for sharing.

Do you know other research groups that are currently researching PFS or PSSD so we can organize a fundraising?

More groups of research scientists is always a plus.

We are talking a few people with some excellent publications (i.e. in top journals like Nature and Cell) whose expertise may also be helpful on the PSSD side. Once things are more concrete, I will be in touch.