Guys, at least be realistic. No cure gonna land here in the next (minimum) 5 years. Some people suffer to an unbelievable extent, pure
suffering 24/7. I’m not pro suicide, life can be wonderful even when mildly sick, but when you are in great pain , bed bound 24/7, where can you hide or run? I personally didn’t felt any emotions for so long, the head pressure, the dizziness, it’s too much. There’s a line how much can (sometimes teens) can handle .
You need this little hope things gonna get better, but I don’t have any hope anymore. Baylor is practically a joke at this point, and pssd is even more vague then pfs. Winning the lottery is more likely than getting cured.
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Guys I know we are suffering immensely and are not our old selves but we can help alleviate our suffering NOW without waiting for studies. If you are able to observe your mind and your thoughts you will realize that suffering comes from thinking about the situation just a much as the situation. Everyone on here needs to be meditating. This I believe is the only universal thing that can help everyone on here.
The thought, “I am broken and can’t be fixed” will lead you to dark places. Meditation gives you immense control to stay out of those dark places.
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What can you do when you can’t distract yourself anymore? When you can’t even watch a damn movie. Can’t feel anything towards nothing, and sometimes not even the pain of fucked situation? You have no to little control over this situation and the frustration goes overboard.
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I see your point, fellas! And I, sometimes, partake of that feeling of hopelessness, but we have to try to move on… What if I was on a wheelchair? Would I take my life? I try to put It this way, sometimes, and it helps!
Meditating can help but the physical symptoms are beyond what the mind can control, you can try to ignore it all you want but when even holding a phone becomes a bit much then that’s when you know for sure how bad your condition is.
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What do you exactly mean as to the holding a phone thing?
I can’t hold a phone from the weakness in my arms, can’t brush my teeth, or hardly lift a fork. It’s madness man
I’m sorry for your condition, Papa! I’ll pray for you and the rest of the guys on this forum!
Wish you the best!
You are comparing these syndromes to something like being in a weelchair. Sorry, but I would choose being in a weelchair everyday over this. I have lost everything, I wish it were just my legs. I am bedbound, haven’t gotten out of the house in months. My main symptoms are severe anhedonia, loss of emotions and derealisation. I can’t watch a simple movie, play a videogame, or do anything that entertains. All I can do is lay in bed and wait. Wait for what exactly? The miraculous cure? Everyday feels as if i am being put on a torture machine, tortured the entire day, to repeat it the next day. Without any future in sight. The future only brings this torture. Listen, we have to be realistic. A cure is nowhere near. Everyday I am begging for mercy and wishing I will just die, but nothing happens. I have been less severly affected the first year, and I thought the same as you. Come on guys, let’s do this! This is good. But let met tell you. When you are very severly hit, and the day becomes too torturous to get through, death is a humane option. When you can cope longer, do that, but we shouldn’t look down upon people who decide to stop the torture.
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I ser your point, brother… 
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We’re here for you man don’t do anything to hurt yourself. I’m in the same way believe me, I have little hope but we need to fight and try to get out of this madness together.
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You still have these symptoms?
To me, the cure will come when we organize as a community and get good research started. Until that happens, it’s all going to be same as the last ten years — people trying fasts and herbs with no results over and over as if it hadn’t already tried before for an entire decade previously, people complaining that no one outside of the community is coming to rescue them while doing nothing whatsoever to contribute themselves, and people committing suicide.
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Even with research, we are talking 10 plus years before a cure is found. Look at the tempo the baylor study is going. It’s a harsh pill to swallow, but there isn’t anything near, no matter what path of reaching the goal you believe in.
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That’s the Spirit, Papa! I like your attitude!
For some people here 10 years still leaves them enough time in their lives to be able to start a family etc and do the things that are most important to long term happiness. But if all we are doing is sitting around bitching then we are all dead.
I think for a lot of the people here 10 plus years is unacceptable, including me. I can’t get out of bed or entertain myself. I live with my parents again, not able to do anything. I am not laying in bed for 10 years, and I know many others in the same situation have the same idea about this. That’s why I also think these people care less about research. Because they can’t wait this long anyway. I see that both ways are a problem. Research takes too long (still has to be done though), and homebrewing just doesn’t lead anywhere. That’s why I deem the situation pretty hopeless.
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Yes short sightedness may end up screwing us all. I wouldn’t be surprised if it’s the case that a lot of people have spent hundreds of dollars on herbs, pinned their hopes on things like fasting and any number of other things desperately looking for a quick fix, and then gotten so depressed that they commit suicide. Imagine if all the money that has gone to misguided and duplicative home remedies had gone to research. We would have a much better idea what PEDs is and could actually be experimenting with therapies by now. Instead we’re basically being our own witch doctors while dying. Once you get above about 40 it becomes very difficult to get married and have kids. Then even if you are cured, you’re still sitting alone with no purpose in life watching everyone else enjoy theirs. Time is absolutely of the essence. But short-sightedness detracts from obtaining a cure and consigns us to same fate as Zadig. The only way out is to start the research, there aren’t any shortcuts.
If there is no way at all that you could contribute to the community, then what I would do is completely absorb yourself in a project or interest in order to have the feeling of progress in something else. I would not think about PFS at all. Just forget about what you can’t have right now as much as possible and then hit the ground running when a cure finally arrives. I think that’s the only way to be healthy and enjoy life with this. Everyone should contribute as much as they can, though. That’s the only way we’ll get a cure. The world doesn’t care what you consider acceptable. It cares what you get done.
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I myself have spend thousands of dollars on treatments, not bringing me anything. What if I had donated the money? Well, then I still had to wait for 10 plus years. People think egoistical, including me. Your argument is right about maybe more research had already been done if people before us didn’t think like this. Yet, they did think like this. Making me end up in the situation I now have two choices. Spending money on myself with an extremely small chance of finding something. Or spending money on research where i have zero chance of surviving long enough to see the day something comes out of that. An extremely small chance is still bigger than zero, so I go for the extremely small chance. Man, I might still donate to the foundation just because I care about the cause, but it isn’t going to bring me anything personally. You can call this short sighted, but to me, this is survival. I want to try everything to maybe, just maybe, get lucky, and survive this shit. And research has zero chance to do that in the next years. Sorry, but I choose egoistical ,because this is about life and death for me.
Also, you are talking about forgetting about PFS, absorb myself in a project, and forgetting about what I can’t have. Listen, the situation I am in right now, there is no forgetting here. As I said, I am bedbound. Can’t do anything. How can I do all this you talk of? My condition debilitates me in all normal activities, there is no forgetting here. Sexual symptoms, yeah, you can work around that. But this is a totally different problem. This is the whole reason I say, I can’t do this for periods like 10 years. I am not trying to get pity here, but people should understand this condition can become extremely unliveable.
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Is there anyway that a research institution could make educated guesses as to the mechanisms behind PFS then try to use medication that they think may work I’d be willing to give it a try even if there was a high probability of failure.