Time to Wake Up

General Discussion
#1

I want to make it clear this message is coming from me as an individual patient. I’m not speaking on behalf of the PFS Network or any other organisation. This is from one patient to the rest of you.

If you’re currently not doing anything to move this issue forward you need to wake up and stop being so complacent. The notion that others are going to do everything, while you do nothing, and save the day for you is both unrealistic and immoral.

Impoverished migrants from Mexico pay between 2,000 - 10,000 USD to people smugglers in search for a better life. If destitute people from the third world can afford to pay that kind of money then I’m sure the overwhelming majority of people reading this post in a first or second world country with internet access have the capacity to get involved and contribute at some point. There’s no excuse for doing absolutely nothing year after year. We are adult men. Have some self-respect and dignity, stop being so complacent and apathetic. It’s embarrassing. https://www.unodc.org/toc/en/crimes/migrant-smuggling.html

There are currently 200 people who are donating, and about a dozen or so who have gone public about this condition.

You can’t spend a few hours a month contacting journalists? Donate a given amount each month? This is too much to ask? Have some self respect.

Diseases get cured through resources and attention. You cannot expect a way out of this if you are completely unwilling to personally do anything to change this dynamic. Stop expecting others to save you. Wake up.

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#3

Hey Erik,

(long post incoming, sorry)

When I was new to this forum, they were still conducting the patient survey. At the time I was genuinely frustrated about the very small number of people who were willing to spend 45 minutes of their time and effort to help collect a significant body of important data in a good format.
I made similar posts like this, where I vented my frustrations, about how people just could not be motivated despite how important that survey was for us all. I felt angry and couldn’t help but ridicule people who spent more time writing elaborate posts about all kinds of nonsense, or even complaining on and on about minutiae of the survey instead of just spending that same time contributing and be done with it.

The reason why I bring this up is because no matter how frustrated I was and no matter how hard I tried to explain to them how important it was, the message just didn’t reach those people. I had basically already reached the people who agreed with me, and everyone else was just too… faithless or whatever, I will probably never sympathize. But wherever their mind was at, the conclusion was they were simply unwilling to contribute.

So, it took way more time than I would have liked it to before the target was finally reached, but we did get there. Not thanks to the people who didn’t contribute of course, but still, over time more people came along who also saw the importance and felt the urgency of it, and were willing to go out of their way to help. One or two new patients discover this forum and the PFSN on a daily basis. Some of those people will be willing to help, others won’t. These things just need time and that sucks, I know, but that’s just the way it is. Either they trust in the captain and navigators of the ship or they don’t.

I am super grateful to those people who are able and willing to donate on a monthly basis, but this is not something I feel we can always expect everyone to do, especially some of the young guys who are still studying and have to pay their rents without any real source of income. Also, the comparison you’re making here with Mexican refugees crossing the US border isn’t in very good taste, for lack of a better term.

I also donated a sum that was significant for me personally, so I understand where you are coming from, and I do hope that more people will become aware and feel the urgency of it as you do. In a just world, patients shouldn’t be funding research into their own diseases and this money should be coming from elsewhere, but with lack of that justice unfortunately we are currently playing with the cards we are dealt.

All that said, ultimately donations are donations. Essentially guilt-tripping others into donating is not productive or a good motivator and it contributes to an atmosphere where people feel pressured by peers to donate for the wrong reasons.

I don’t blame people for mainly donating during a time where there was a lot of community momentum. As we have reached our first target and while additional research efforts are being developed, I can understand that people feel less immediacy in donating right now, especially if their finances are not flexible. I’m faithful that those people who have donated in the past will be willing to donate again in the future, even if it’s not on a monthly basis. I don’t think we should make people feel obligated to donate in a certain way or with one frequency or another.

4 Likes
#6

Firstly, I commend you for all of your efforts both in the past and present. What I will say below might come across as abrupt, but that is not my intention. I have a lot of respect and gratitude for everything you have done.

My analogy of migrants being capable of paying people smugglers isn’t in bad taste. It’s entirely apt and appropriate. If desperate and impoverished people can manage to save thousands of dollars to improve their situation then there is simply no excuse for anyone suffering from this condition being incapable of doing anything. A young university student can still spend time volunteering, sending emails to journalists and researchers, helping to mobilise the community etc. If detractors don’t trust the navigators then they should generate an initiative that is objectively superior to the one they are refusing to support and complaining about. But none of the malcontents will spend years diligently writing a literature review that is taken seriously by scientists, like Axolotl has done. Nor will they put up tens of thousands of dollars like Mitch, or spend time editing podcast videos. Instead they do nothing. This is simply not respectable.

I made it clear that this is my own personal point of view and that I’m not representing the PFS Network. Mitch has been nothing but kind, sympathetic and patient with everyone, including those who refuse to do anything. It’s my own opinion that people should feel guilty if they are unwilling to do anything. I personally think it is pathetic to be completely unwilling to do anything, and I feel this needs to be said by someone. People should have enough self-respect and dignity for their own lives that they do something to extricate themselves from this nightmare.

Within two weeks of crashing I launched a GoFundMe drive, set up a recurring donation, filled in the patient survey and told Mitch I would do the podcast. I am not trying to toot my own horn by pointing this out. I have no ego invested in this whatsoever. Others, like Mitch, have done more than me and I understand everyone’s situation is different. But for Christ’s sake at least do SOMETHING at some point, and certainly don’t sabotage and smear people like Mitch who have done the most for this community.

3 Likes
#8

To follow up on what @Wintermoon said, I went through the same thing, I remember waiting for the survey to be made available, I knew it was coming and it seemed to take forever. More time than you’d think, but Axolotl wanted to make sure that every detail was right, because we had one shot at it, and I think he was proven right, if we had published the survey and then found the data was irrelevant/flawed, it’d be difficult to run it all again, having people complete their submissions for a second time.

…and wow, was it difficult to convince some people to take the survey. People took it personally if I asked them repeatedly, like it was an insult to be asked, people who would post theories about the value of various supplements, vitamins and herbs for hours wouldn’t fill out the form. And it’s difficult to know what the right thing to do is. Some people did respond to being nagged, others dug their heels in, others outright told me to fuck off.

And I think there are lessons there, firstly, you can’t really force people. Be the change you want to see.

If you’re thinking “it’d be great if people would…” then you just found your job. Do that.

The second thing is that most people are decent people, but most people don’t respond well to being shouted at, so try and find a better, nicer way to explain why they need to help themselves.

Because, and here’s the third thing, breaking the culture to get even to this point has been hard. When I signed up everyone was posting their ideas

“perhaps if you squirt lemon juice in your eye every morning that might work”

“Give it a try!”

“I think it’s working”

“I tried it every day for a week, no change”

“It only works if the lemons are from Sicilly, and they need to be fresh”

“I can source powdered sicilian lemon extract for anyone who wants me to post it”

That was an example of the type of exchange you’d see. Getting away from that (though you see it still sometimes) is a big achievement, and really a big part of moving our community in the right direction. That stuff was what our community was for years and leaving that behind us part of why people say this place is depressing, because the guaranteed to fail sicilian lemon protocol gives people the chance to hold on to the idea of a quick fix.

So, we’re going in the right direction, but you’re right it is frustrating. As I posted in a long topic that got some people angry a while ago, if you can find a way to move this forward without telling someone else what to do then you’re that day’s mvp.

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#9

Haha God, the days of being abused for asking people to fill out the survey. Fun times.

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#11

God, that is depressing

#12

Screening all the forums and chat groups in my opinion there is one point to mention:

It’s important not to split the pfs community in different divisions, who really start to attack each other…

The pfs network, propecia help and the latrogenic fundraise group for research and awareness campaigns good connected to the PSSD network coming up with stunning photographic awareness campaign.

The recovery chats and solve pfs groups supporting self medication

The alternative pfs research group and chat discussing alternativ theories

The meanwhile totally forgotten pfs foundation first who fight against Merck for pfs victims and for public awareness and goal oriented research

The well documented first year recoveries and long time recoverer, the lucky ones of the community well integrated over all

The mystery recoveries suddenly enter propecia help (some removed), telling I recovered from my protocol, but nothing documented or with total incoherent time schedule and datas. And unproofed telling it’s that like that theory and the cure for all.

The severe cases, who just want to vent and get some human support, like the elderly men, they disappeared totally not involved in recovery or research and sometimes feeling guilty between the fronts

“We’re old, we’re done, we just want to vent and someone who listens.”

And than all them who disappeared to nowhere and all them who are totally desinterested in all, they behave totally unbelievable:

“They cut my cock, shrunk my balls and shot my brain, but I don’t want to stress about that”

So we have to remember 24/7 that pharma cartel made us zombies, castrated us, took our pride and we have to fight back.

Merck, Organon, all the psychmed and generic producer, insane hairloss doctors, ignorant medical mainstream and corrupt agencies are our enemy.

The 256 “suicides” have been murdered for profit, for marketing a well known dangerous drug.

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#13

Well said Manu. I wish there was more unity in this community. I fundamentally believe we can get to the bottom of this issue and fix it. We have to regain our lives, nothing is more important.

It frustrates me deeply when I encounter resistance or subversion of the important working being done to chart a way out of this for EVERYONE who has this disease.

“So we have to remember 24/7 that pharma cartel made us zombies, castrated us, took our pride and we have to fight back.” I couldn’t agree more!

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#14

Its also good to remember that even though our donations might not bring a cure in our lifetime, it could bring a deeper understanding in the human body for future generations.

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#15

Yeah nah I’m not willing to be a martyr to this shit. I’m working under the assumption we’ll get to the bottom of this, fix it, and get our lives back

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#16

Right and that’s your opinion but ultimately, I think it makes more sense if it applied to all human beings for all time, as no cure can reasonably be promised for us.

#17

It WILL inevitably bring about a deeper understanding of the human body, and no, no one can guarantee us a cure, but it matters not. We do this for us, and with hard work and a bit of luck, we will overcome.

But we must unite, and create belief.

People have recovered from this, so whatever it is, it’s reversible. Let’s make that happen for all of us by focusing our efforts.

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#19

whammy :face_vomiting:

#20

It doesn’t “make more sense that way”. It’s insane how we internalise the idea that our lives don’t matter or that it’s asking too much that we get our lives back. No one should ever accept this condition. This is a completely unacceptable situation we are in.

It’s ridiculous and immoral to expect people to be onboard with the idea that we’re sacrificial lambs for the general advancement of the understanding of the human body. We’re not lab rats and we’re not sacrificial lambs.

People end up killing themselves not because of side effects but because of no hope for treating this. This needs to end, as does the idea that we shouldn’t expect this to be resolved.

We will continue pushing and we will find a treatment for this condition in the same way numerous other ailments, genetic defects and diseases have been researched and tackled.

4 Likes
#21

Cool man, that depends on the person right? I don’t want to be contrarian but it could go both ways right? What happens years down the line when no cure is found? If you view your donations in the grand scheme of things then there is motivation to keep going. Short term or long term as long as the money keeps flowing the research keeps going! As we all know genetic diseases are easily curable and statistically most people who have them get better…