Agree. Nobody should feel forced or badgered into donating.
We think the need to support research is clear and well-reasoned. As we’ve said many times, we need as much support as we can get, no matter how small it may seem. Appreciate everyone who has contributed/continues to contribute.
What is hcg? Im new here and my english is not to good. Thanks!!
As if asking nicely is gonna make a difference. Some people are unable to see the bigger picture/think rationally and no amount of persuasion will change that.
We’re all brothers (and in some cases, sisters) in this fight. We all just want to find a remedy to fix this issue. I understand tensions can run high sometimes. Everything counts, and I promise that everyone on here is beyond appreciative for any donation people can give.
Having said that, the “stern” approach that Erik and others are taking is exactly what we need right now, because despite what people believe, big things are happening behind the scenes and there’s more momentum now than ever thanks to people like him. The cycle of negativity and arm chair scientists is being broken, and a solid understanding of the mechanism behind all this is being worked towards. I’m very confident we’re going to find it.
If there are certain supplements or treatments that are working for people, then by all means continue. Nobody here wants anything more than for people to get better. If HCG is helping some people in some aspects, then that’s awesome. However, years of experimenting clearly hasn’t yielded consistent, positive results for most. That’s why there is such a big push right now to work together to find out what the true root cause is. Once we know what that is, we can then start working towards finding a viable treatment/cure for this.
“The definition of insanity is doing the same thing over and over and expecting different results.” - Albert Einstein
People can try whatever they want, but search for hcg on this forum… It’s been discussed already over a decade ago. This is nothing new… we’re going in circles.
How can a substantial part of the community look at what the network, a legitimate organisation, is doing in terms of raising awareness and conducting actual research into the very condition that has destroyed your lives, and still try to undermine it. I can’t wrap my hear around it.
We have an actual chance of getting PFS recognized. Why are we wasting time and needless back and forth on this. Nobody is coming to help us: we must do it. And decades of broscience has gotten us nowhere. It has an incredibly lousy track record.
If you find something to make your life more manageable in the meantime, great! But please, let’s stop bickering and work together on this.
I’ll simplify it.
Take the survey, Infinite. Post-Drug Syndrome Surveys Hurry it up! What are you waiting for? Just do it now! Don’t ask questions!
@Recovery18, please take the survey when you get a chance, and thanks for your service in the military. The survey is technically research.
Spot the difference?
The caricature you present is a direct byproduct of constant sabotage of progress, slander and obstinance by certain elements of our community. Your priorities are quite bizarre to me if you are more bothered by the odd sharp or blunt request than by outright sabotage of efforts to fix this situation we’re in or the spreading of doom and hopelessness. You should read what Greek had to say a while back about the effort it took to get people to complete the survey, if you harbour the illusion that it was as simple as asking people politely.
Read this and ask yourself what the bigger problem for our community is. You might want to also ask yourself where the exasperation stems from.
I’m 100% with Eric here. Sometimes it might not be pretty, but it is necessary to wake people in this forum up. As was said before, for two decades users in this forum have experimented with what feels like every supplement, remedy and protocol from any corner of the universe and the success rate was close to zero. The few recoveries we have seen, are most likely all just natural. But as was said here before, noone on here is preventing anyone from trying out different approaches and from experimenting with their own body. What I just don’t understand is how this is the only thing most people are doing. Why put all your eggs in one basket? Why are some people so reluctant to also support a serious and dedicated research approach that is endorsed by world class scientists?! This is the best shot for ALL OF US to get out of this mess and to return to living a normal life.
So yes, Eric and others’ approach might seem harsh sometimes. But it is necessary so that people understand that sometimes in life there is no quick fix to a problem. We all are in this situation because we wanted to have a quick solution to our hair loss problem. Let’s not repeat that mistake. PFS is an insanely complex clinical picture - random experiments with supplements won’t fix it. Sometimes in life, you have to accept that the only path out of a problem is by investing years of hard work and dedication.
As Eric has said before, it is immoral for the majority of the PFS community to sit tight and do nothing. Yes for some people it is hard to donate because of financial hardship - that is fine. However, you still can get involved by using your time to raise awareness and by maybe finding other donors instead of spending hours in this forum discussing supplements and protocols.
But while the ants and the grasshopper were bickering, a sparrow flying overhead saw they were distracted and, swooping down, helped himself to a tasty and nourishing meal.
From the grasshopper, he absorbed courage and determination; and from the ants, he took the capacity for strategic thinking.
Thus strengthened and renewed, he took wing and climbed high, up into the wide open sky.
research. oh well im just sorry as someone who studied science in academic ways ive to say that if you wait for a cure by “research” youre gonna die waiting, not to be harsh
harsh is the reality, we’re alone in this and no one cares bout zombie limpers as far as they still make lots of money and are functional. and well, they make and they do
and it just bumps their desire to still make that, those really interested in our condition dont really matter then. it would contradict the active “force”, if you know what i mean
not too hard to understand how this world works
welcome to hell, bro
Man some of you lot are fucking nuts.
So instead of finding a mechanism behind PFS, establishing it as a legitimate medical condition, getting reparations, support and possibly a cure - you would prefer to do nothing, wither away in obscurity and whine about how unfair the world is.
By the way how is your broscience recovery going? Not particularly well from what I can see. Let me know when the penny finally drops.
And so your solution is…?
Dude seriously.
Because of people with a shit attitude like this, we’re gonna die waiting alright. Thanks a lot.
Can you seriously not see how every little contribution will compound. We’re waiting because of the massive inaction in our community.
Have you done anything at all to try and help? Anything?
Don’t you get it. WE must do it.
Get up and start doing something.
I’m sorry but this message is just so discouraging that it makes me physically sick. I don’t know which college or university you attented but they definetly completely failed, if you left with such a negative attitude about the capabilities and motivations of the global science community. Most of them are not evil monsters like MERCK, instead there are a lot of people out there who want to do good in the world. But how should they do anything about PFS if they have never heard of it?! That is why we need to wake up - people need to stop to hide in the comfortable anonymity of online forums and need to go out in the world, show their faces anf tell their story.
Every great innovation and change in the history of humankind was initiated by a few dedicated and motivated people - let’s all be part of the solution and not the problem
Yes, I am a “middleman” for spending hours of my time gathering videos from patients to make a compelling case to Movember. You talk a lot about your expectations and what a shame it is when they are not met. My expectation is simpler and less self-important, that people in our community treat this issue with seriousness by taking action and do not damage the worthwhile efforts of others. I have never ostracised anyone for venting, I have ostracised people for saying there’s no point doing anything or investing in research because it’s hopeless. If my occasional posts on this subject bother you on such a visceral level, then l I suggest you ignore them and stop commenting. You certainly won’t be costing me anything worthwhile.
It doesn’t appear that this sentiment is borne out by your earlier comment in this thread.
Saying there’s no point in research/dedicating your time with PFS solely to destined to fail self-experimentation does not qualify as venting.
It seems to me that the efforts underway are quite the honeypot…
And this and other conditions are already recognized. But that just move a fucking millimeter in therms that: people don’t give a fuck.
People got mad with my comment, what the fuck. Reality hurts I know.
Point is, the researches that has already been made points to nothing and only confuses more the community. It’s not and will never be reliable since it’s reports are all anecdotal and subjective by nature. There’s no way to measure anything with that range of symptoms and intensity.
About awareness, I’m very active on this and literally 100% of the people around me knows my suffering. I’m gonna repeat: no one understands this shit, really. If you tell someone you can’t feel emotions and/or just are asexual they’ll just up their eyebrow and say “well fuck it, weirdo”. Because no one get it or care about it. People are living their lives.
About donating, I did already, not that I believe that it will do a shit. Just like it hasn’t since internet became acessive and we the lobotomized limpers came out with our rants.
For what what to do: I don’t know, do you? I’ve changed my whole lifestyle, I’m in the best shape ever and no supplement will help me, it’s just another risky thing to try.
And to freeze: welcome to hell. Because that’s what it is. You could ask Dante how to get out of this shit, and even him wouldn’t know.
I know this situation affects us all deeply but let’s try to keep it civil.
As far as the conversation goes I think all the necessary points have been made.
Again, thank you to everyone who has donated to the PFSN so far, and anyone who has requested others, friends, family and fellow patients, to donate as well. It would not have been possible to organize research efforts without all of your help.
Let’s keep pushing the situation forward together in all the ways that we can and stay hopeful that we can make a change.
