I hate to be the pessimist here but I like to look at the reality of the situation particularly when I get more credible information from someone who knows what they’re talking about.
Its truly cute that every community affected by chronic illnesses suddenly believes CRISPR will be here quickly to save them.
Example:
This should be especially absurd in our case since:
- We dont know what PFS is.
- We dont know what the exact capability of CRISPR is.
- We dont know whether that capability would be helpful for PFS.
- We dont know how far CRISPR is away from being deployed regularly (although judging by the propensity of media to hype and typical development timeframes, decades).
- We dont know if governments will restrict the use to life threatening diseases first (likely since its gene editing).
- We dont know the dangers of CRISPR and potential drawbacks.
And so on and so on.
But yes, lets all jump on the latest hype train. After all, its advancing “rapidly”. Guys, maybe take a cold shower. 
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The problem, and reason we don’t have a cure already, is that no one has any incentive to provide us a cure except ourselves, and instead of doing things like organizing research and donating to the foundation, all we do here is bitch and impotently wait for someone else to come help us. That person will never come because there is no incentive for them. I wish people got that here but they all have short-sighted victim mentality, prefer to spend millions of dollars in aggregate on herbs and fasting even though neither has worked for anyone in tens years of constant duplicative attempts.
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Please consider to take a cold shower, too, and reflect whether going around this forum laughing at people’s opinions, mocking the leading scientist of an important piece of research (one of the few who was willing to engage with us and publish about “PFS”) , spreading sarcasm all over the place, telling people in a thread titled “suicide” that this condition will likely not be solved in the next 50 years and generally repeating everything over and over again is the best way to contribute to this community and the best use of your time.
It’s one thing to point out that this is a complex problem that won’t be solved easily and will take time. We should not be naive. But it’s another thing thing to tell suicidal people that this won’t likely get solved in a meaningful time frame. For many people here, hope is a very important thing.
So, let’s keep things respectful, constructive and empathetic!
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Great how you oversimplify things. I explained earlier here why people do this. It’s because they can not survive another 10 years waiting for research, unlike maybe you. This is not people who just deal with impotency, this is people who suffer so hard they will kill themselves if a cure isn’t found in the next 2 years. Yes it’s a horrible trap, because we need money for research, and yes, it’s a hard time to get out of this negative loop. But you should not paint this group as ‘‘bitching’’ and being ‘‘short-sighted’’, because they do not have another choice then choose for themselves. They have to choose for themselves because their life is on the line. You call these people short sighted but I find your comment quite short sighted to be honoust.
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Fair enough, and I understand that some may be in too much pain to continue anymore at all. I guess my argument is that herbs and fasting has effectively been proven not to work now, so I think it’s very dangerous to pin hopes on that because of certain disappointment, which adds to depression.
If we could get a good study going then we could easily obtain new insight within a year or two. New insight would provide real hope, rather than false hope. For those barely holding on to life and unable to contribute, my recommendation is to stay away from this board and bury yourself in something else entirely, because being around here is basically dwelling on the bad, which makes depression much worse. I can tell you that from personal experience.
Like last time I responded, when really severly hit by this disease, you just can not bury yourself into something else entirely, because you are just not capable mentally and physically to do that anymore. The fact that you propose this, shows me, how you, and this is an assumption I am making, have a bad idea about how it is to have this PFS/PSSD on an extreme level. These things you propose are just not doable down there. I had moderate PSSD the first year, and the things you just proposed were able back then. When I became worse the 2nd year, this all ended.There is no mental escape anymore. And I know for sure many others here are in that position too.
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In my current state as it is I don’t know how much longer I can hold on the pain is insurmountable man the aches that I’m feeling are really unprofound, it’s like I have a really bad case of DOMS every single day and the ringing in my ears is like a jet engine taking off and I have this really intense sick feeling in my stomach and head like I want to throw up but can’t.
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Yes cases like yours is what I am talking about. You need something, not years of ‘‘patience’’. It’s just impossible to endure that.
Definitely man I’m suffering big time, it’s 7 months now been stuck in my bed unable to move because of the intense pain. Man I’d swap any condition out there for this, cut off my two legs and I’ll take that over this any day of the week. To suffer like this is inhuman
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Same, I am also bedbound. Can’t stay in bed like this for 10 years waiting for a miracle. I hope sincerely we get lucky man, this is an absolute nightmare. Let’s give it all at least for the time we are still here.
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Going to try my best man that’s all we can do. I have a meeting with the government to see if I can get sick benefits because of this condition but this isn’t even registered as a condition so I don’t even know what to say to her if I can’t get some source of income then I’m fucked altogether
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You shouldnt mention the condition. Saying you have severe OCD/depression/insomnia and chronic pain making you unable to work will get you one. But just do not mention PFS.
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All of these effects can be, and most likely are, a downstream effect of a dysfunctional AR. Please refrain from making conclusions about something you do not understand.
I think I understand it pretty well @borax I’ve researched this condition for hundreds of hours. You can’t say it’s all related to a downward stream of dysfunctional AR not even the professors know that.
So you understand a dysfunctional AR can cause of all these problems? And you understand we have found evidence of the AR being overexpressed in studies done on PFS patients? Whereas we have no scientific evidence to support this is “autoimmune, hormonal imbalances that don’t rebalance, damage to certain neural receptors, and system wide reactions” Where’s the evidence for any of that?
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Do you also understand all AR is differently expressed in all kinds of tissue. They sometimes even react reversly. Where one gets upregulated, in another tissue part it gets downregulated. How are you going to fix this all apart from each other, with something like crispr for example?
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I absolutely do understand it can cause a downstream of life altering side effects but why is the professor at Melcangi researching the gut microbiome if was all related to the AR? like it has been mentioned numerous times we don’t know what PFS is and the exact mechanisms behind it- for now it’s only guesswork.
I’m certain a cure can be closer than we think.
They made mice addicted to cocaine. This apparently create an epigenetic change in their DNA by introducing methyl molecule in the DNA string to roll it tighter to the histone underneath. (I’m kinda paraphrasing here. Just imagine a roll, around which DNA is kept, and methyl acting as staples that squeeze the DNA in and make inaccessible certain genes.).
As a result, the mice are permanently addicted to cocaine, even if they have no contact to it for months. As soon as you present them with some, they instantly remember the effect and take some, even if it brings them to their death.
Then, they take the same kind of cocaine addicted mice and give them an anti-methylation treatment. The Methyl “staples” are removed, the genome is restored and when presented with cocaine, those once addicted mice have no reaction to it. They have “forgotten” about their addiction.
Epigenetic modifications are nature’s way of changing the DNA expression without having to go through millions of years of evolution. It’s like your DNA putting markers and taking notes on what works best and what works bad.
If pfs is an epigenetic problem (aka: gene suppression via methylation) we might not be that far from having a treatment that would make our body “forget” it ever came in contact with fin or had a DHT rush that needed silencing androgen receptors. Granted, they may have erased useful markers on the wacky coke-head mice and didn’t care about it. Those scientists who do those things don’t seem to have much empathy for mice. We wouldn’t want to erase useful markers on a human being (although there are pharmaceutical company CEOs that share’s the scientists lack of empathy, but toward humans. I will not name any companies but you know…)
So I have two things to say about this:
First, what kind of crazy fucked up scientist makes mice addicted to cocaine for Christ’s sake ?
And second, the etymology of “epigenetic” actually means “outside of genetic” or “genetic affected from the outside”. It means that if you make changes “outside”, you can affect the epigenetic state of your DNA. That can include changing habits, social circle, climate, diet, exposures to contaminants etc…
It basically means you can do something about it by making the appropriate changes in some of what’s “outside” of your DNA. That’s a pretty large field if you ask me. I have hope, and in my case as with many of you, I’m certain one day this thing will be behind me. I will document everything, as I did so far,
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