In the US ist’s very easy to kill themself, because of the firearms and Pistoles in every Household. In the Rest of the world suicide ist rather complicated. So I Thing Like you.
This I agree with.
Unfortunately, the bias I see is that most people are so desperate for a way out, understandably, that they are prepared to believe that vitamin d, broccoli and cold showers are legitimate treatments.
There’s no shortage of posts claiming to have worked out the answer. It’s not like people are being silenced. It just feels like there are a growing number of people who are sick of these protocols remedies and treatments that don’t work being brought up on rotation.
There is barely any evidence that those who have improved have benefitted from these substances and activities any more than the passing of time. That is to say that I don’t think there’s any evidence that doing nothing at all helps fewer people than endless experimentation. Doing nothing has the advantage of not being a risk to worsening people’s condition too.
A treatment plan that has a record that is worse than doing nothing. That doesn’t sound like something we should be prioritising.
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Vitamin D has positive effects on a variety of conditions, often times serious ones like psoriasis and multiple scleroris. And once again, if we have people reported benefit from it, I don’t see any reason to believe they aren’t being honest, or maybe just experiencing place effect.
The bias in obvious. Against supplements, against gut healing, against diet and lifestyle changes, and in general against anything that isn’t genetic/epigenetic related.
What about those who were stuck with PFS for years and then improved with supplements? Or those who got improvement almost overnight?
How come if I take a given compound and I crash, that’s obviously the compoud, but if I take the same substance and I experience an improvement is placebo effect?
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Well, the reasons that people develop pfs are unlikely to be related to nutrition or exposure to the sun. So that’s one thing that suggests genetics and or epigenetics are a good avenue for investigation.
Supplementation and exercise haven’t proven themselves to be reliable treatments. We have over a decade of posts on the subject.
Those are fairly strong examples to favour one direction over another.
I’m not sure why you’re banging the drum for continuing down the same road that hasn’t delivered good results. At this point nobody would say that self experimentation has been successful for even a fraction of people here.
If I wanted to make sure PFS was an eternal mystery and an affliction for life, I would be trying to make sure that no scientific research took place, which is what you’re doing now. Whether you mean to or not, attempting to say that vitamins and lifestyle choices can cure this will mean fewer people will step up with our projects.
Really, if you believe so strongly that supplements and lifestyle can cure this then the obvious question is why don’t you go do it? We have over a decade of experiences for you to draw upon here, you surely don’t need any more people to experiment on themselves, enough people have done it already. Anyone who believes they can get themselves out of PFS would not worry about the expense so I assume there is no barrier left to your success.
So, good luck.
For the rest of us, this is the time to change this community’s direction to something that will benefit everyone, not just a few people whose dubious accounts of restoration are dredged up repeatedly. If diet and supplements were a real option for everyone, we’d have more success stories and fewer tragedies.
I think people forget how high the stakes are. Some people have died over this. Someone we know is in hospital right now, unable to function in any meaningful way. Saying “no let’s just continue down this same old road we’ve always gone down” and then feigning outrage if you get challenged is more significant than it might initially appear. It is something that prolongs the agony and conceivably could cause people to take their lives.
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It is not your position to decide whether your data is useless. Many people probably added datapoints that are somewhat incorrect. The entire point of a survey is to collect a lot of data points so that patterns arise in the grand scheme of things. You may feel your trajectory and experience was different than others, but the survey has such questions about previous/other medical conditions and drug intake as well.
I still think you should do the survey. It does not matter if your data is slightly different. It does not skew anything.
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I am not talking about why we develop the syndrome, but what we can do to relieve the symptoms.
There are reports all over the forum. Often times they just get overlooked and obviously outshined by the users who report bad reactions to the same compound. That’s just human nature: 10 positive reports are not enough to convince people, but one negative story will scared the hell out of most (me included).
The other day I was reading @M_C thread and he commented his Vit B12 supplementation by saying “I just can’t do without”, pointing at the mental relief he’d get. He didn’t say “wow, I’m kicking PFS’ ass thank to B12”, he just reported a (marginally) easened condition to deal with.
Because a lot of people have reported substantial benefits, and I mentioned some of them above. I’m not saying “go experiment”, and once again I know it can be very risky, but why should we discredit all those stories?
Personally, natural Vitamin C did wonders for my nails, in a span of … a week maybe? And you know what? Psychologically it was very good not to have messed up nails under my eyes all the time. Did that turned my situation around? Nope. But still, it’s good.
Nope, this is what you got out of what I wrote. It’s not what I mean and, personally, I really can’t see the day when a study is published saying “guys, the answer to PFS is supplement X”.
Once again: supplements of any kind have benefited some people. Their stories are on the forum. So what I can’t get is why would you discredit those stories. Not claiming Vitamins and minerals are the cure, but if some of us get symptomatic relief with certain compounds, why would you dispute that.
They can be beneficial, they can be harmfull, they can have no impact, but why would you accept just the last two outcomes?
That being said, the best bet we have at this point in time is research. That’s obvious.
But that doesn’t make what I said any less true.
You are trying to switch the focus from what YOU said, to some speculation around my persona.
My point is this simple: if we have stories about people getting better on supplements, what gives you the right to say supplementation is a wortheless path?
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Look, I’m not trying to start a fight here.
As long as we don’t discredit users reports I’m fine.
We should not allow people who don’t take the survey to use this forum. Many duplicate accounts have been coming here lately to proove their brosciences.
Since I’m just reporting other people’s stories, I guess you are referring to them as broscientist.
All I’m saying is people have reported benefit from supplements, as well as worsening and unchanged condition.
Can you prove me wrong?
Can you take the survey?
@TFD I’m not seeing a fight, I’m seeing a discussion.
Just to add my two cents:
Nobody is trying to discredit the idea that vitamins are good for you. You’re basically interpreting things way too literally. Obviously yes, eat your fruits and veggies. Honestly, how is proper vitamin intake even sound PFS-patient advice? That’s just common sense. Regarding any other supplements or remedies: Some therapeutic efforts can indeed be beneficial. Nobody is disputing that. We are free to try things and share experiences. The problem is getting a good view of which are beneficial versus which are potentially harmful can be a hard thing to figure out because this forum is a huge pile of anecdotal threads from people sometimes having completely opposite experiences.
The point was never to discredit patient experiences. The problem is that a large portion of forum users are focused purely on self-experimentation based on individual anecdotal reports while not contributing to more constructive collaborative efforts that create a better overview of the condition, its patients, and the homebrew treatment methods.
These are all things you can do without being hampered in any way to pursue any homebrew therapeutic effort of any kind that you were already doing.
The ‘upper echelon’ here is perfectly aware that people are going to self experiment anyway given how awful the condition is and there are very few other valid routes to go… so they actually provided a Survey #2 which actually allows you to comprehensively and constructively input your experience with homebrew therapeutic attempts of whatever sort, in order to structurize and create a better overview of which supplements or therapeutic efforts are the most promising.
< yelling > but nobody is doing that! < /yelling >
So what happens over and over again is that people do something and they make a new thread telling about their experience. Which gets lost in a sea of other similar threads which is a mess of anecdotal reports strewn across the internet which is hard to navigate and does not amount to a larger collection of data, which if we had, would go a long way in separating nonsense from effective pursuits. All it takes is a tiny extra time investment, and if people would spend a small portion of the time writing elaborate forum posts, we would have had much better data by now. It would rule out a lot of nonsense and perhaps even make it possible to create a list of first-line therapeutical things to try.
So while people like yourselves constantly find excuses to dodge responsibility, constantly kick against the shins of those people who took up the impossible task of managing this community as fairly as possible, constantly refuse to add valuable data points (Everyone’s experience is different, everyone’s data points skew the data, but that’s okay, that’s the point) and constantly feel attacked when somebody points out that there is potentially self-destructive and non-constructive efforts going on… there are actually ways to do all the self experimentation you want and still make valuable contributions to the larger whole. It’s not 0 or 1
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Will the survey add anything to my point?
I’ll complete the survey. But not today.
It will give ur data to the “Real Scientists”. It’s kind of a disrespect to the guys who made the survey when people here don’t take it even after a month of joining and keeps supporting claims about fad diets and supplements.
If someone gets cured by taking vitamins that means he had hypovitaminosis, not pfs, same way if someone feels 100% cured on trt that means he had hypogonadism, not pfs. Feeling better on trt is fine, but feeling like ur old self is hypogonadism. U people are making us seem like a bunch of hypochondriacs infront of others.
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Ok.
I’m obivously being misunderstood here.
I have nothing but respect for people who built the forum and invest their time to keep it going, day in and day out. I can’t get how me taking the survey will make my point any more true, but I have no interest in investigating further.
Once again, the best bet we have is research. But as ny other bet, it could turn out to be a losing one. We could end up not knowing what PFS is, or maybe we could but with no cure, and plenty of other possibilities.
And of cours the more research is done the sooner this shit will be taken off the market, and at that point the number of PFS patients will drop every year, possibily bringing the already low scientific interest in this condition to an even lower point.
All I’m saying, is that since we have reports of people reporting benefit from supplements, we shouldn’t feel entitled to say that supplementing is a magic beans approach.
If someone comes wondering wether a certain substance can be benefcial for them, we should tell the truth: that there is no way to know, and that while the majority of people didn’t report any change, some of us got considerably better or worse.
It’s not that difficult. And I don’t see how anyone could mistake this statemetn for “take supplements, you’ll be cured”.
Anyway,
guys I don’t want spend an entire day talking about supplements and vitamins.
I made my point. Wether you agree or not, I’m fine anyway.
You doing the survey is research. If you believe research is crucial, then the survey is crucial.
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It has been nonsense, outright lies and pure fantasy or delusion at various points. The whole culture of self experimentation has held the community back. Nobody is going to say that if you sleep a little more easily with a harmless supplement is a big problem. But it is not a cure and really we should be, long term, aiming for that.
People resisting taking the survey holds us back. The consultations we’ve had with scientists have praised the data we’re generating and gives us proof of the shared experience we have had in a way that scientists can accept and deal with.
While there are some substances which people benefit from the use of therapeutically, a lifeime of dependence and continued vulnerability to future exposure to 5ar inhibitors is not a cure. So when I say that supplements aren’t a cure, and you reply
You’re dead wrong. Ask Merry Christmas if, even with his supplement if he thinks he’s cured.
Do you understand that some people in here might not even have a long term?
That some of us could not be interested in waiting n number of years while dealing with this condition?
Yes, everyone wants a cure.
But I’ll tell you something, if I could find some symptomatic relief while “the cure” is being found, that’d be a big freaking improvement.
So if you have a reason to discredit the stories of people reporting benefit, please do it and do it now so we put the word end to this dibate.
If you don’t please just give me a break.
There is a clear mismatch between the arrogance you play some stories down and our understanding of this condition.
Are you freaking kidding me?
I literally wrote:
How would you read “marginally esened condition to deal with” and undestand “cure”?
And what about people who got destroyed by the supplements, vitamins and drugs? There are hundreds of people here who got destroyed by supps, many of them committed suicides, these are the ones we should care about. The chances of getting worse via experimenting are very high, has shown very bad endings.
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Shame on me for not mentioning potential adverse rections.