Ways to create more PFS media awareness

Dear friends,

I wanted to start a thread dedicated to ideas (creative, practical, or whatever) to spread awareness about our condition, our community, especially our efforts to collect data and promote research.

It is as if the message to the public has been reduced to an urgent warning about these pharmaceuticals, when we are also asking for research, real help and medical attention.

Through the efforts of documentaries, newspaper articles, and personal vlogs, some awareness seems to have been raised and the existence of our problems is slowly becoming more acknowledged. However, there is still little acceptance and understanding in the medical community at large from whom we need it most.

The survey on this website that serves to centralize and collect PFS-related patient data has had far too few participants to enforce data credibility despite there being thousands upon thousands of victims. Among which are probably a lot of people who would be glad to participate in this survey, eagerly awaiting to do one of the few tangible things they can by spending 30 to 45 minutes of their time to gain recognition and have hope for a resolution.

But they haven’t.

So I have come to the conclusion that our community, and our survey in particular, is not getting enough attention because it’s:

  • not visible enough
  • not accessible enough

Is it a website problem?
Can the website and e-mail notifications be designed in such a way that old community members can be reached to inform them of the survey?
Is it really necessary that the survey is blocked to everyone except those who have made a handful of posts for a prolonged period of time? I imagine this is necessary to enforce genuinity but I fear it may do more harm than good if it shuts out potential survey participants who don’t want to engage in prolonged forum activity.

What other things can we do to reach out to other victims, and spread awareness in general?

Personally I am considering to work on an animated film or video game to spread awareness.

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Make a video:

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The biggest problem is exposing yourself speaking about your numb penis and E.D in tha age of 23 y/o…

I agree that we need to raise awareness but we need a very creative idea that will gain us credibility and keep us anonymus.

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With respect, that won’t work.

People need to be relatable.

Here’s a terrible thing that is happening to a person you have to imagine.

Here’s a terrible thing happening to this person standing in front of you.

Big difference.

Obviously, depending on what you want to achieve and if you have funding, this changes things somewhat.

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I think it’s critical we have women and children rather than only balding middle aged guys in our demographic. The media is more wont to relate stories of victimization among some demographics than others. Just one of so many reasons why unification with the other two groups should be at the top of our agenda.

Women and children are also involved if they have been widowed or have lost their father through this, as well as those whose relationships with their husbands/partners/fathers have been significantly impacted by this, through divorce, job loss etc. etc… This doesn’t happen in isolation to men only. There is a ripple effect which impacts many more than just the person directly experiencing the condition.

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Not obviously enough for mass media. This is the clickbait age. No one reads beyond the headline. Headline that works: “Thousands of women and children around the world suffering sexual death by hand of big-pharma”. That’s all people read. They might click on a 5 minute video of sad stories of marginalized people being further victimized, but that’s about it. Women and children headline will send white knight and women’s rights crusading scientists scrambling for funding. Headline that doesn’t work: “Men who took baldness drug experiencing erectile dysfunction and depression.” That will send media editors saying “If they can pop expensive vanity pills for their hair then why can’t they pop expensive erection pills for their wieners? Got anything better for today’s headlines? No one wants to click that.”

There are in my opinion several problems with ‘personal story videos’.

Forgive me if some of my points here are rather pessimistic, but I agree that there can be much more powerful ways to send our message to the world, that would actually reach the average joe, instead of those people who are already in our situation and community.

As mentioned by @nana123 public scrutiny is a big fear factor. Despite my willingness to contribute to public awareness I am also not quite mentally ready to ‘go public’ just out of the blue. I don’t want this disease to define me socially and destroy my life even further than it has.
I want to be seen as a productive person, not an indefinitely broken person, crying for help, even if I have legitimate cause to do so. Perhaps this is a cultural problem of our society, influenced by the perceived factors that socially define us as ‘men’.

Another problem with this is that you’re not really ‘standing in front of someone’ in a video these days.
I agree it’s a strong method to raise empathy by showing you are a real person of flesh and blood. But will they care enough to share the video? What can they really do to help? People will just click a video away if either:

  • they can’t be arsed to empathize with someone they don’t know personally
  • they care but are just completely lost on what to do to help
  • it’s not presented well enough for them to stick around to the end of the video

When people could be watching funny videos or people telling happy stories, why would they spend their time watching sad stories? I know this is a huge oversimplification of video consumption in general but honestly ask yourself, what’s in it for the viewer really? Who watches this stuff to begin with? Doctors? Fellow sufferers? People concerned about whether taking certain pharmaceuticals is going to affect their health? People looking for pharma conspiracies? Certainly not your average joe unless one of our personal story videos happens to go viral on social media for whatever unlikely reason? And that’s a huge problem.

Also, these videos are too singular and too case specific, and rely too much on the quantity of stories. Even if a hundred people would make a personal video describing how these pharmaceuticals have destroyed their lives, we could still be written off as nutjobs and hypochondriacs, and our different symptoms would raise suspicion and confusion among specialists. I’ve already seen some of these people in their videos detailing their anger and suspicions towards Merck and all that. While I feel this is completely understandable, I think it further confuses the narrative we are really trying to promote, which is more genuine research and to reach out to ‘lurkers’ and those victims who haven’t figured out that their symptoms are caused by quitting these pharmaceuticals to begin with.

In my opinion, a personal video becomes too much of a debate whether our condition is real or not. If one or two doctors discredit your video then who will people prefer to believe? You or the doctor?

But here’s the thing:
To us, this isn’t a debate to begin with, we are not having an argument about whether our symptoms are physical or not. They simply are, they are not self-induced and we need other people to really get a glimpse of what that is really like with their own eyes.

If I were very cynical I would say you’d be better off showing your deformed genitals in public then just ‘telling your personal story’, because in the end we mean nothing to anyone except to our own friends and family, and it’s better to shake up the world with a good harsh dose of reality than dragging out our personal problems wishfully thinking that people will watch the entire story all the way to the end.

They’re also very unlikely to ‘spread the word’ because they are not in our situation. Most people are not just going to blindly repost a sad disease story, if there is nothing interesting or fascinating about that to any random viewer.

So my conclusion is:
Nobody is going to watch, because there’s nothing in it for the viewer.
I think it is worth telling our personal stories, but I think it would be better not to dwell on them for too long and focus more on reaching out to people who are suffering from the same things and have been ‘lurking’ here and there, just too scared to even join a forum or go to a doctor in the first place.

If I make a beautiful work of art that tells people about Finasteride and how we suffer chronically and how drastically it impacts our lives in the long term, that might reach much more people and serve as the leverage I need to overcome the stage fright by going public. Because at that point, I have contributed to society, something personal and hard-hitting, but still there is something to experience for the viewer too.

But yeah, easier said than done of course.

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[Edit]The points expressed below are me “thinking out loud” about how we could possibly cultivate an “angle” that would hopefully generate public interest, although I appreciate that a lot of my points relate to the pharmaceutical industry and how it’s broken, rather than individual testimonies etc.

I suppose that it is tied into the bigger story of Big Pharma, but this has been covered before, although everyone will probably be dependent at one time on medication where clearly one’s health and safety can’t aways be presumed going by the many drugs that have caused significant harm. Finasteride is one example of this, and is more egregious as it is cosmetic. I wonder whether it would be possible to perform a cost benefit analysis considering the costs, not just to the lives of the many men affected by this drug, but lost income, health costs etc., whilst Merck count their profits with no real accountability. I feel that this could prove an effective angle and show the disparity, with ordinary citizens having to pick up the costs whilst large corporations remain to a great extent untouchable. Are lives lost an acceptable trade for a hair loss drug? Is the emotional wellbeing of many men upset at losing their hair enough of a justification for causing irrepairable harm to a few of them, including many suicides? Especially as we still don’t know enough about the drug that many thousands of men are putting in their bodies to save their hair. The fact also that this drug can cause harm, both whilst taking and on stopping is I believe something that isn’t widely enough known and further demonstrates its dangers: it’s effectively playing Russian roulette twice over. Add to that the Reuters revelations which shows that risks are buried and both the medical profession and the public alike have been hoodwinked into believing manipulated data. The suffering of men harmed by the drug is further compounded by the medical profession citing this faulty data against them. How common is the practice of a pharmaceutical company effectively committing fraud to get a drug to market where it might not have been green lit if all the data was presented? It appears that it is left to the victims to both correct the patient information leaflets through the reporting of adverse events, and in the case of pfs victims, try and both understand and fix side effects that won’t resolve through self funding. I feel that the setting up of the PFS Foundation is a huge story of David versus Goliath in and of itself.

I feel that these are pertinent points that reflect wider issues with the pharmaceutical industry. We just need a big enough player to run with them.

Yes the pharmaceutical industry is systemically faulty and I agree that many of the hurdles that PFS sufferers go through are caused by this. A big hooray for capitalism.

But this is obviously a dead end for us as far as media awareness goes. Nobody likes to talk about how corrupt the world of pharma really is.
The people who genuinely want to change that are dismissed by ‘the common good folk’ as ‘leftists’ and ‘commies’ and ‘jews’ all over the world and aren’t given a chance to be part of a government so there’s that. So who remains that would really be big enough to tackle such obstacles? It’s an interesting topic for sure but I really don’t see how this is helpful to us in our current lifetime haha. :man_shrugging:

Personally, I don’t care if all the wrongs in the world are made right. It’s too big a challenge.
At this point, I don’t care if Merck is held accountable or not. I just don’t. Sometimes I don’t even care whether Finasteride is taken off the market or not.

All I want is that our condition is researched, understood, and cured, so that everybody on this website can just move the fuck on with their lives, and future patients can find the cure and also move on with their lives.

I don’t want the world to go: “Oh Finasteride is poison, don’t take it!” - and leave it at that and just casually forget there’s a couple of ten thousands of young guys left for dead who still need to have their condition fixed.

We need something that all the big media will JUMP on:

"If you take Finasteride, you have a 2% of impotency FOR LIFE"

Had I known that, I would never have “tried” finasteride. Nobody would.

2% is one in fifty. Almost one in your highschool class! But I didn’t know, because all you hear is the odds are pretty much zero.

The 2% is my own estimate (10-20% of men see side effects, incl. temporary, according to some studies, and of those, 10% end up with permanent side effects, according to another study*, so together that’s 2%). Interestingly enough, Dr. Rynne used the same number: " It could be as high as 2%"

*I can’t find the source. It was a paper where they compared in a database how many out of the complaints of side effects by fin users were permanent (not cured).

Once one media outlet jumps on this, soon every media outlet in the whole world will be covering it. A journalist once explained to me how this works: all these media outlets are looking at each other to see what the other one is writing. If it’s something that will get attention (traffic, revenue) they will write about it too. It may start with an article on an obscure website, but soon, CNN is covering it.

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Once a media outlet jumps on it, they’ll want to write more than one sentence. So what else do we want them to write about:

  • “20% of men taking fin see their sexual performance diminish” (while on the drug, I think) (Head of Urology of a french hospital, see quote on pfs website)

  • Fin permanently changes the neurochemistry of your brain. Who wants to take that chance? There are studies where they measured this (Melcangi 2017 i think). Certain antidepressants suppress 5ARI’s just like finasteride, and have similar sexual side effects, and doctors know this. To sum it up: “Blocking 5 alpha-reductase to any degree in the brain is a crapshoot,” says Alan Jacobs, a New York–based neuroendocrinologist. “Unfortunately, in some men, the damage is hardwired” [i.e. you never get better] You need Testosterone in your brain to avoid Alzheimers, and fin reduces it even after you quit the drug (or at least some testosterone neurosteriods). Had I known that…

  • “I can try the drug and stop when I see side effets”. That’s what I tried, and I still got PFS because 1. the side can effects grew gradually so I didn’t realize what was happening, I thought it was in my head. 2. when you stop the medication, that’s when many people get it

  • These media should also tell people that if they want to quit fin, they should consider tapering off to avoid the crash. Dr. Rynne says that most of his patients are crash patients. If I quit fin, it’s because I’m starting to see side effects, and I’m probably not going to wait till they’re really bad. So you end up with a mild to moderate PFS case. But if you crash, you’re a moderate to bad case and you end up visiting Dr. Rynne.

  • No wonder it’s mostly young people who are affected. They are often single (like me) so you don’t have sex or cuddle and say, hey why am I not getting a boner during cuddling, foreplay, why am I taking so long to come during sex, … It’s harder to notice when masturbating because without realizing, you’ll use a heavier hand or use porn to still feel the pleasure you’re looking for.

One more thing: “PFS” will never grab people’s attention, “Propecia” and “Prozac” do (all the time).

This will create MASSIVE attention, and indirectly for PFS.

But if you make it about PFS, it will never take off.

Go for it.

I will say that people can and do listen to / read and watch things that aren’t funny videos.

This woman has 5000 followers. I don’t know how many of them she had a month ago, but this story about her health problems got 160,000 reactions. https://twitter.com/DaniOliver/status/1279155358666305541?s=20

Now, this is something which is particularly relevant given the threat to all people at the moment. But it’s worth thinking about people who are saying that covid19 is a hoax and there are many of them. When I googled propecia, I found many, many people saying that the side effects were either negligible or would go away. I didn’t find one video describing the conditions that are common here. I think it’s a bit of a shame that you’ve taken the stance of discouraging people from making a video, but I look forward to your artwork.

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Best way imo:

We have to approach this with a process.

Test messaging
Test distribution channels

Test everything and iterate on what works

Maybe video works
Maybe it doesn’t

Point is to hunt for what works and then scale it to mars

The first step is to unify and /or coordinate with the Accutane and SSRI groups. People won’t give 1/10th as much about a small group of impotent men from baldness drug as they will about large group of men, women, and children from common anti-depressant and acne drugs. Even more important, scientists won’t be nearly as incentivized to help the narrow demographic subgroup as they will the much larger and more diverse whole group. In fact, if we don’t unify then there is a large chance that scientists who would’ve investigated our problem as well will rather only investigate PSSD instead, for example.

Interesting. Why did she get so many reactions, and what can we learn from this? 1. Twitter and social media are amazing for spreading a message, 2. This is Covid. People take note because they know it could happen to them too.

To get similar attention for finasteride, we need to flood the internet with reports of bad side effects. People will pay attention because many people or their partners have some hair loss and are taking or considering finasteride. Twitter is ideal because it’s so viral, but very few guys will have the balls to broadcast their impotence to the world. Until then, we can leave reviews such as on this site: https://www.drugs.com/comments/finasteride/

If we don’t, people will continue to hop on finasteride thinking the risks are rare. I know because I was one of them.

report your ADRs to the appropriate government agency as well