How to make the world believe that PAS, PFS and PSSD exist

General Discussion
#1

Hey guys,
lately I was thinking a lot about a project idea called “Scientists united behind PAS, PFS and PSSD”.

To solve our diseases we need research. For research we need money and scientists.
One of the necessary things to increase possible research funding is to increase awareness.
Problem with awareness is that patients are afraid to speak out. There are many reasons why nobody speaks out, but one is that the disease is not recognized and that people speaking to their doctors or families get attacked with disbelief.

I looked into several topics that dealt with similar challenges. Climate change is such a thing. 3 years back many people - even scientists - were denying climate change publicly. People pointing towards the problem got ridiculed and attacked although the scientific evidence spoke for them.
Now, 3 years later, this has completely changed: climate change is widely accepted as the most pressing problem of our time, now the denialists are the ones being attacked. Funding opportunities for research and organizations that come up with solutions to climate change are flourishing.

How was this fast change possible in such a short time?

I think Greta Thunberg and the “Fridays for Future movement” https://en.wikipedia.org/wiki/School_strike_for_climate alone would have been just a bunch of crazy activists. But then scientists steped in as “united” backing the Friday’s for future movement. https://en.wikipedia.org/wiki/Scientists_for_Future

So, here with PAS, PFS, PSSD we have a similar problem: We have a lot of denialists and most people who talk to their doctors are not been taken seriously.

We can change that.
There are more than 7 doctors and med students who suffer from PAS, PFS and PSSD. I think I have met about a total of 50 people in the community who are afflicted by the disease and have studied a scientific subject. Not a few are neuroscientists and molecular biologists.

Imagening, that these scientists instead of speaking out for themselves, would rather speak out for PAS, PFS, PSSD as a disease.
If 50 scientists united behind these diseases say that PAS, PFS and PSSD are real, it will become extremely difficult for denialists to attack or disbelieve community members when they speak out.

People can only speak out if they have a save space to do so. The majority won’t speak out if they have to expect that they might get attacked or rediculed.

Once we have 50 scientists heavily backing PAS, PFS and PSSD, it will be save for most community members to speak out. People will start telling their stories to their families, to the public and the public interest from doctors, scientists, politicians and the general crowd will increase.

Overtime this will not only lead to more doctors and family members believing, but also increase the number of scientists interested. With increasing awareness possibilities for research funding will rise.

We, as scientists could even publish an open letter or a paper to the public, doctors and politicians.

Let’s brainstorm further on this. What do you think, could a project called “scientists united behind PAS, PFS and PSSD” really increase awareness and make a change for our cause? And what could we do to make it reality?

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#2

I have no idea if thats a proper thing to say and plz delete it if not, but the world would hear a woman talks about a medication that destroyed her sexuality 100 times than a hundred men…
If we want at least for PSSD/PAS to be more heard…FInd a way to make affected women share their story.

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#3

Indeed there are several brave women in the PSSD community who are speaking out.

#4

I don’t think so. Having more women who are affected by these conditions speaking out would be good, but the world does not care about women’s issues more than men’s issues. If that were the case, women wouldn’t have so many issues that needed to be addressed.

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#5

I never said „All Issues“…Im saying about this particular thing…
Sex and Men is just a very bad combination in my opinion, since men in general are the ones comitting crimes and evil things such as Rape, Pädophilie etc…So Men without sexuality is just a guarantee that those wont do something bad (Plz dont take my words as if im accusing you of those things :D)…
Its a fact that when you hear a man has errection problems, its something to laugh about, and im sure you did laugh about it when you didnt have PFS/PSSD/PAS…Men are always stigmatized when talking about their sexual problems.
Trust me, ppl would be willing to read pages about a woman having sexual problems than 2 lines of the same problem with a man… thats just my opinion anyway…

#6

I disagree. It’s actually socially acceptable to talk about half of humanity being “toxic” because of an immutable characteristic – the gender they were born with. We also are in the me too era where male sexuality is considered dangerous and oppressive. In contrast, female sexuality is widely portrayed as oppressed and in pressing need of promotion. Deprivation of their sexuality is definitely considered more of a tragedy for young females who took pills for mood or to meet beauty standards than it is for balding middle aged guys who took pills to look younger (probably to do something immoral, knowing how fundamentally bad males are).

Like it or not, we are in era dominated by a victim-oppressor narrative within which half of the population stands accused of being oppressive and the other half is portrayed as victims. There also is the whole privilege narrative according to which everyone is owed by successful males (who should have their wellness reduced in order to narrow life achievement gap).

#7

You definitely got one thing right: a mini-epidemic of women being deprived of their sexual functioning because they just wanted to meet beauty standards is definitely more likely to be seen as a tragedy by society. And as a group of predominantly young men who are unhappy with our lots in life, we’re pretty ripe for being conflated with the alt-right or being accused of being incels or some sort of hate group. It also doesn’t help that most of us are balding and have ED. We’re on the bottom of the social totem pole.

Part of me worries that an awareness project spearheaded by women with PAS and PSSD will leave PFS forgotten about. Then again, a lot of people seem to think that all of our conditions are closely related, so hopefully we’d still see benefits. And of course, people with PAS and PSSD getting cured would still be a great thing.

I also want to add that i don’t think 50 scientists speaking out is going to guarantee that denialists won’t be able to attack them. I don’t know what the consensus is in the scientific community, but there have been a number of threads on this forum about doctors on sites like reddit and twitter very confidently denying that PFS is a real thing. I fear that a group of 50 scientists speaking out will result in a larger backlash where they are revealed to just be a small minority of the scientific community and they are ultimately dismissed as being nutjobs. Then again, with the recent Reuters investigation we should hopefully have enough evidence where we can’t be accused of just being crazy anymore.

I think it would be worth trying, but I’d also curb my expectations.

EDIT: I wanted to get something off my chest. There have been a couple people in this thread who think that male sexuality is vilified because we’re associated with violence or oppression. While I think our symptoms don’t get the respect that they deserve and probably still won’t as awareness increases, I think that narrative is off-base, and I’d like to offer an alternative explanation.

The burden that society places on men to be providers extends to the bedroom. So if you cannot provide good sex, then you are more likely to be seen as a failure of a man than as a victim or whatever. I think this is evidenced by the fact that a man who cannot maintain an erection (whether due to a condition like ours or just nerves) is more likely to be ridiculed than a woman who cannot stay wet during sex. And although “loose, gaping” vaginas and “roast beef” labia are sometimes joked about or even ridiculed, there are way more jokes and unironic insults for small penises.

Just something that I hope that some of you guys will consider. I’m not really looking to start an argument or derail the thread.

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#8

We can worry about over successful awareness projects leaving PFS behind after we see any signs of anything materialising at all for the first time in what’s decades now.

#9

@BibFortuna
I agree, there will be of course denialists attacking that group of scientists, but that would be our job: defend the community so that it becomes easier for victims to speak out. We have to protect them.

@silentpain89
Might be, but maybe not. I think this can easily be an excuse for us man to not speak out. No matter if men have a more difficult standing or not, we men have to speak out, no excuse.

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#10

I see that there has been a discussion about how we as a patient group would be percieved and that maybe in today’s climate females would get a more sympathetic ear. Although that maybe true, as has been demonstrated in the past in some of the media coverage of pfs, anything to do with sexual function and penile shrinkage is great clickbait, but that of course won’t translate to hands in pockets. It also misrepresents the extent of the syndrome.

I do think in some ways we can present our problem as being a universal one. There is I feel a casual dependence on pharmaceuticals and we have paid the price for what was presented to us as an easy fix, obscuring the role of dht etc. in the body. A pill for hair loss feels like the apex of this. We have been given this wake up call, but millions out there are unquestioningly taking medications prescribed to them. On a personal level I have close family members who I believe have also been harmed by medication and only this week thanks to the due diligence of my father my mother’s medication was changed after two years taking two medications where the efficacy of one was impacted by another, when the first medication is potentially lifesaving. This feeds into the point that @NomisB makes in his podcast interview about medicine moving towards a point of individual responsibility and disease prevention. Again on a personal level, beyond the obvious mistake of propecia, I wish that my G.P. didn’t so readily persuade me to take anti-depressants, or just leave me to coast on them indefinitely, with god knows what long term impact.

Of course tying in with both PAS and PSSD makes this so much bigger, especially anti-depressants, as I am absolutely positive that if we scratch the surface we would find legions of sufferers with an impaired sexuality at the least.

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#11

Yes any group consisting of men is liable to be painted with those kinds of terms that are used for the purpose of dismissal. For any kind of embrace we certainly need to be perceived as being in group equally if not more so represented by women and children.

#12

Truly stumped how it took exactly one reply to OP to turn this thread into an incel narrative. Please stop.

#13

I think it would be interesting if there was a way to artfully or ‘entertainingly’ convey the emotions that we go through as patients, mostly as a means to break the taboo of talking about things like sexual dysfunction and depression in men, and to give non-sufferers a very clear brief window into our reality and to create empathy for our condition.

I’m thinking about a short hand-drawn animation, (technically speaking not unlike that Icelandic Greenpeace commercial about the orangutan, for those of you who have seen that one).

Let’s say the thing was a short drama animation between 1-4 minutes long. A video that is short enough for people to be willing to briefly emotionally invest themselves in when they’re just going about their social media routine and maybe share the video if it touched them.

For starters, we would need a clear storyboard and script. I have some ideas on it in my imagination but nothing on paper yet.

For example;

It starts out innocent with a guy looking in the mirror touching his hairline. Then taking home some pills he got from his local doctor with the reassurance that they’re “perfectly safe”. The movie quickly spirals out into a drama as the protagonist is, over an extended period of time, increasingly confronted with sexual dysfunction, insomnia, and the despair and depression it brings.

The video would finally end with one of those text endings you see in movies that are based on real life events, strongly urging men to talk about their experiences with sexual problems or other permanent side effects caused by drugs. Add in some real-world data from studies to convey perspective and harsh truths and you might have something that could leave a mark.

The challenge of this project would mostly be in the pacing and not to flood the viewer with too much at the same time, making decisions on what symptoms to include in the story and how to convey the confrontation with those symptoms in a way that is heartbreaking and evokes sympathy rather than shock and invite mockery, all within a short timeframe. Of course careful decisions would need to be made about whether certain brands/medications should be explicitly named/shown or not, and what kind of claims are made, in terms of violating social media policies or avoiding other legal issues.

With a (small) crowdfunded budget we could hire a (freelance) animation studio to create the short movie based on the storyboard. I imagine the costs of this animated video would not need to be skyhigh when inquiring with the right studio that can provide the right style and feel for the job without too much manpower.

I’ve honestly been playing around with this particular idea in my head for a while now. Anyone else want to share thoughts?

#14

Never heard that term before, I guess it is a relatively new one devised for purpose of dismissing views that don’t agree with one’s own. Anyway, there certainly is hardly a group that it would more actually reasonably be applied to men, women, and children who have PFS, PSSD, and PAS :smiley:

#15

I’m guessing your talking about this commercial? https://www.youtube.com/watch?v=JdpspllWI2o
I’ve never seen it before, but that’s some powerful stuff.

I really love and respect animation as a medium. It gives the creator total control over the visuals of their project and can be very powerful. But it is in fact very costly. Even the cheapest of animation studios (and freelance artists) will charge 4 if not 5 digits for a single minute of animation, let alone up to four minutes. It would be very important to not cheap out on an animated video; a poorly-made one will likely fail to leave an impression on the audience. Personally, I’d like to see a short animated film like your idea, as well as abridged 15 or 30-second versions that can be played like normal ads. But this is the kind of thing that will have to come further down the road when we’ve raised more funding. For the foreseeable future, we’d be better off sticking with live-action. It’s cheaper and it might be more helpful to put actual faces to our conditions.

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#16

While animation isn’t cheap I still think it is less costly than let’s say, actual medical research, and might return the investments in the awareness that it raises in the long term. Four minutes is quite lengthy anyway and it probably doesn’t need to be that long.

There are also other ways to make animation cheaper. Let’s say the script and storyboard and general art direction are done and clear. You could contact a school of animation and perhaps turn it into a student project. I mean obviously student teams are likely to produce a less high quality end result than a wintered animation studio, but I’m just saying that there are multiple ways to Rome in terms of getting things done on a budget.

#17

Cruel world requires cruel options to survive. Only if some 50 people commit mass suicide infront these fucking companies only then the world will believe. Sorry i know this is not a practical thing but this is a fact

In a world where the president itself takes the drug which we are opposing without any side effects, how can we think the world will believe !

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