I think we should schedule a variety of meet ups on a recurring basis for PFS patients to connect in real life. I personally only have one friend that partially understands what we are going through so we have to depend on each other. This is just a reality. Many people on here are guarded, myself included, but we can all fight this together. There are some guys on here that really need this.
I propose scheduling somewhat regular meetings for people to check in on each other. People who live in more sparsely populated areas can travel to the closest meeting if they would like to. Take a look at the global PFS map and you will see you are not as alone or far as you think you are.
What do you guys think about this? If anybody is interested, I would appreciate it if they picked a time and place. I’m in NYC, fortunately near a bunch of other guys, but that’s all I’m comfortable sharing right now. We can keep this as anonymous or public as people feel comfortable sharing.
When I found out about PFS I made a post about future survival of this condition being sought amongst fellow sufferers. The worst affected will loose their jobs, their income and probably have to apply for state benefits. If they cannot live with parents they are faced with state funded housing which is likely to be low grade in an impoverished area. Poverty is well known to cause depression without adding in a serious health condition. Over a hundred years ago when women had no rights and were beaten by their husbands some were fortunate enough to live in women’s refuges. These communes grew from desperation and a need for help when society had let women down. Does this sound familiar? These refuges still exist today.
I think in the end depression and a loss of hope will be a driving factor behind PFS patient suicide. So for those worst affected I feel they stand a better chance of survival by living as a group. They are better seeking housing/state housing together which will offer them ideally a better property than if they did so alone. Hippies have set up self sufficient communes were everyone contributes in a community that survives off the land. Somebody told me about a self-sufficient island that a group lives on. Apparently, they grew tired of their 9-5 existences and wanted a life free of capitalism. It contains many ex professionals and free thinkers. In reality I don’t see any of this happening for PFS patients. However, I do see a need because people are ending their lives often alone. I’m sure if we had more information of those who had passed we could establish a profile of circumstances and learn from this. I am certain there are patterns behind certain suicides but this information is not being utilized and more will die.
These PFS forums lack leadership and a structure for survival. Men come here and post theories about this and that and talk about protocols and supplements. But there is evidently something darker occurring outside of this, something that is being ignored. All this talk of protocols gives men hope but it’s clearly not enough. PFS groups and meet ups would be a start but I don’t see the worst affected turning up and participating. I see only partial sufferers attending but it’s still a great start and a great idea. Now imagine if the researchers are sitting there right now and thinking, “If we tell them what we know, we take away their hope… and hope is a very dangerous thing to lose.” The studies may not bring good news and there is little in place to help this community deal with that. In the end people can choose to live together or die alone. Our situation is not unique as I shown through the refuge example. The specific details maybe different but the overall affect on our lives has already occurred before. History has shown us how to live with this and how not to live with this.
For those of you who have seen Interstellar you might be familiar with the poem Michael Caine recites.
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
The poet who wrote this Dylan Thomas suffered with mental illness for most of his life and fought against depression, poverty and even alcoholism amongst other things. His poem is about survival no matter how tough or difficult it is keep pressing forward. He tells us that we should not give up and struggle against death. No matter who we are “rage” for more life rather than slip into the darkness or “that good night” as he calls it. We all want to see old age and to do so with a life to look back on. As I said before history has shown us how to live with this but there are no easy roads.
While a meet up might be good for some, andyuks idea is downright dangerous. Its dangerous because if you have an illness its best to live with healthy people that can support you, not sick people who need help. Its dangerous because it encourages people to give up and start living in what amounts to a permanent state of surrender. All this group would talk about is PFS. The entire reason this group would exist is PFS. The likelyhood of negative dynamics developing in this group is high. Also this idea encourages people to leave their current lives and give up on their jobs. If this is necessary is always a personal decision. We dont need a massive group that encourages such a decision.
I would say that a small minority is so severely affected, that they cant even hold a basic job. That would only make sense, if you have severe! brainfog. Severe brainfog by definition only affects a small number of PFS sufferers. Mild brainfog shouldnt mean, that you lose your job. If you have no brainfog holding your old job while having PFS should be possible.
Another symptom might be permanent exhaustion. I have this symptom and can say with some confidence that working with this is possible, if it is a intellectual work. I also have difficulty falling asleep. There are ways around this too.
In summary I want to say this: PFS is a terrible condition, that severely reduces quality of life. However the most important thing, that has to be fought for, is that you continue your old life as much as possible. Moving to a place different from where your roots are, to live with a bunch of PFS sufferers, is a terrible idea.
P.S.: Andy, we agree on the donation stuff. We agree that a meetup occasionally might be a good idea for many. I cant go further than that though and disagree with your other idea.
OK guys, let’s try to keep this positive. If people want to live in a commune with one another, that is their own choice.
I am suggesting we start by holding meet ups where we can support each other in person and begin to build human connection which is critical. This is a lonely disease but there is no reason we have to keep in the shadows entirely.
I’ll start by creating another thread for a NYC meet up. Hopefully others will follow suit.
While a meet up might be good for some, andyuks idea is downright dangerous. It’s dangerous because if you have an illness its best to live with healthy people that can support you, not sick people who need help.
People with serious mental health problems already live together in communities through assisted living, house shares etc. Psychologists have signed off on this type of living for many years. People in retirement homes have degenerative medical conditions but still live together. together-uk.org/24-hour-resi … -services/
It’s dangerous because it encourages people to give up and start living in what amounts to a permanent state of surrender.
People who have committed suicide have done so through a state of surrender and they often feel isolated, alone and helpless even living with healthy people.
People living in communes have roles to play, they are expected to contribute to something bigger than themselves, that is not a permanent state of surrender but a new beginning.
All this group would talk about is PFS.
People with mental health problems don’t sit around talking about mental health problems all the time so why should people with PFS? If you have someone had an obsessive personality that has nothing to do with PFS.
The entire reason this group would exist is PFS.
No the group would exist because people want to be around others who understand them. Whether that group resides in an apartment, house or somewhere else.
The likelyhood of negative dynamics developing in this group is high.
Subjective opinion based on an assumption which as we know ASSUME makes an ASS out of U and ME
Also this idea encourages people to leave their current lives and give up on their jobs. If this is necessary is always a personal decision. We don’t need a massive group that encourages such a decision.
It’s better a person gives up on a job than life itself. This idea of a job being important is capitalist, westernized thinking. I have seen with my own eyes families in 3rd world countries taking care of each other with no job, whose daily duties involve cooking, cleaning and supporting each other and very little else, they are not miserable or unhappy. My idea is that people are stronger together not alone. Strangers are now buying properties together in order to get on the ladder. There is nothing stopping PFS guys from doing the same thing. standard.co.uk/news/london/b … 59557.html
Moving to a place different from where your roots are, to live with a bunch of PFS sufferers, is a terrible idea.
PFS sufferers can join communities around the world were they can make a contribution and start over. Nobody here want’s to be judged.
pvdl I have answered your points quite fairly so let’s agree to disagree and leave it there. Take care!
I am suggesting we start by holding meet ups where we can support each other in person and begin to build human connection which is critical. This is a lonely disease but there is no reason we have to keep in the shadows entirely.
PFS can involve depression, chronic fatigue, low testostereone and anxiety. There are groups and meet ups already being run for these types of conditions in most cities. People from all walks of life and medical conditions find themselves in groups like this for support. The hardest part is always the first step.
I just want to add one more thing: Most PFS sufferers can continue with their old plans and jobs (which hopefully give them a sense of purpose). I agree that there are exceptions to this rule, but those are the extreme cases in my opinion. Continuing with your old plans as much as possible and staying connected to your roots, family and old friends, will be much more satisfying than joining the proposed group. That much I can say for certain.
The more you let the disease to take control of your life, the more it will dominate your thoughts and impact your emotional well being. In my opinion your idea would be the last resort, when everything else has failed.
Pursuing your old goals and getting a real job will also put the community in a better position to financially support the foundation, which will eventually come up with a treatment. Even if this takes 15 more years. Better late than never.
I respect your opinion and thanks for your civil reply.
Not a bad idea in theory, andyuk. But might not be workable in practice. A weird dynamic could develop in relation to progress of members. Some might make gains, others might not - could be awkward and depress those who aren’t fortunate enough to make gains. It’s not a ridiculous idea though and could maybe work under the right conditions.
I’d be open to a meet up infrequently, I think everyone has to try and find a way to cope and survive but we have to be realistic at the same time. I’ve come round to thinking recovery is possible for some not all unfortunately, hope is a big driving force for me but I’d prefer to think for my state of mind that there is no cure as such and don’t expect this PFS foundation to come up with one anytime soon because it creates false hope for me anyway. So I will to recover myself with a plan which I am following with no guarantees of course but I think I can at least get to a better point. At the same if all else fails after 5-10 years than I’m within my rights to call it a day. However I think I’m making enough progress at the moment for me not to have to think along those lines yet.
I dont want to restart the discussion about the foundation/ natural homebrew here, however that sentence (bolded) doesnt make any sense.
Action A) Donating to the foundation (which you say entails hoping for a cure in a reasonable timeframe)
Action B) Establishing a recovery plan that wont guarantee you getting cured, but that hopefully will get you to a better place (within 5-10 years).
How is Action B) not creating a potential “false hope” while Action A) is?
Couldnt you donate to the foundation with the same internal mindset that you have for your recovery plan, i.e. one that keeps false hope in check:
i.e: 1) You have a resonable hope that they at least find an explanation.
2) You are aware that there are no guarantees that they will find a cure and that it will take time.
3) You will donate with the mindset, that an explanation is enough and that you want to increase your chances.
Also you say that hope is a big driving force for you. By definition hope entails the risk that its a false hope.
Lastly and maybe most importantly: You are actively thinking about killing yourself in 5-10 years, if nothing works. However you dont want to increase our chances by donating, because it might create a false hope. Thats ludicrous. If there is the danger of you committing suicide because nothing works, you have to fire an all cylinders and make sure the chances of something working are increased. The risk of an action creating a false hope is irrelevant if it at the same time this said action increases your chances of survival!
The above isnt the real reason. The real reason for the lack of donations from peopel who can afford them are these:
Either A, people dont want to admit that this might be a more serious problem. Donating to a foundation for a lot of guys entails this admission. Of course this is irrational. Either it is or it isnt a more serious problem, where research is needed. Donating or Not donating wont change the facts about this disease.
Or B, people want the research, but want others to do the financing for them. Basically they want to free ride. They are too greedy, to spend money on something where they get nothing in return immediately.
Or C, people are already cured or on their way to recovery.
Or D, think that the foundation has no chance of solving this. Thus they have no hope and they dont think its necessary that anybody does research on this.
Point A) is irrational point B) is immoral and Point C) is understandable and Point D) is basically held by no one (everybody wants research to be done and has a small hope).
Well all I can say is I believe in my plan because there I know where I’m going with it, it’s worked for some in the past if it doesn’t work for me then I doubt there is much else to do naturally.
We can donate if we are in the position to health wise (only the person in question knows this truthfully), into a bottomless pit with no real guarantees of solving it. My feelings are you have a great chance of recovering if you just have sexual or mental issues and or are making progress generally. However, if you have all of it like me you have a lesser chance of recovering although not impossible because every case is different.
To put it simply I don’t have any faith in the PFS foundation to find a cure anytime soon that’s why even if I could I’m hesitant to contribute. As far as I know there is no cure, and you have to find your own way out of it like others have in the past if you can or that’s it. The more important people and people who could really make a difference in this situation don’t give a shit about it. Credit to you and others though for following through on it, but don’t attempt to shame or guilt anyone into contributing that is up to them personally.
Maybe I am just more realistic about hombrew while allowing myself some optimism regarding science and the foundation. I believe they can find an explanation in the next 5 years and a treatment in the next 10. I think you are massively overthinking it, as its a rather small contribution that is necessary. If you are in this situation, you have to take risks.
Without money and science, you will with a very high chance suffer from PFS for the rest of your life. You are 2.5 years into this with no progress. Thus your chances of not recovering naturally are probably quite high. The foundation might be a low chance option in your view, but maybe its the only one? Ever think about that? Of course not. Better stick the head in the sand and scream: lalala. Maybe the natural diet and excercise root is the false hope? Just recently a guy came on here, who recovered, who said that a lot of excercise is the wrong way to go, because it stresses the body too much. The point is: That excercise actually cures you is just a theory that has been spread by cdnuts. Looking at it objectively, many recovered while doing nothing in particular. Some even ate junk and they recovered. Many who didnt recover trained like maniacs while eating the perfect diet. Those who did recover dont know why they recovered and might suffer from confirmation bias. I would say the evidence points to the fact that excercise is a small relieve, but not a cure and maybe not even casually linked to any case that got cured, despite the claims of many. It might be the case that you either recover or you dont and that all the natural homebrew stuff is irrelevant. Just like cancer survivors are mainly just lucky guys.
If you would know right now, that excercise wont recover you and time wont either, you would want all the members including yourself to start donating now, to maybe find a treatment in 5-10 years. Lets say its 2026. You have unsuccessfully tried homebrew. Nobody has donated. Now an angel comes and says: If everyone had donated 10 dollars per month from 2016 onwards, a treatment/cure and explanation would be 2 years away (2028). How stupid would that make you feel?
Thats why I fire on all cylinders. No matter how low the likelyhood: Excercise, diet AND donation. These are the two pillars. It is important to support both, because maybe only one will have success over time.
If those who didnt donate, wouldnt receive treatment if a treamtent was found, I bet you would be donating immediately. All your mental masturbation is just a coverup for your free riding mentality regarding the foundation. Lets admit it and lets not beat around the bush. If you want to call that shaming, thats your decision. Other are shaming people into doing the natural homebrew stuff.
I will leave you alone now. Good Luck anyway. If you change your mind, post it in the fundraiser thread.
Come on guys, I started this thread to discuss the possibility of creating an institution that could possibly save lives. I understand how fucked up we all are but don’t bring others down with you. The whole point of this place is to support one another. Please move this extraneous discussion to DM or another thread. Thanks…
Nobody is bringing anyone down its stating two different opinions there are good points for both sides of it. Nobody said anything that wasn’t fair enough to say, do what you have to do
Good point. Except the part that states, that there are good points for both sides . There really isnt a good argument to be made against installing a small monthly donation. Just like there is no really good argument against a healthy diet and excercise. But I think we have talked enough about it. Good Luck and hopefully we will get better over time.
. There really isnt a good argument to be made against installing a small monthly donation. Just like there is no really good argument against a healthy diet and excercise. But I think we have talked enough about it. Good Luck and hopefully we will get better over time.