suicide

If we tell them that it will be solved soonish and that its easy, we will not progress at all. One of the problems in the past was that people thought they could wing it from the couch and shop for a cure at walmart.

If they had appreciated the complexity, they might have set up a monthly donation to the foundation.

Its better to be realistic than hopelessly naive.

Lets just say that our only hope is pooling our resources via the foundation. But we shouldnt delude ourselves into thinking that they can solve it within 10 years.

All we need is to find out the etiology of it, and the rest will follow. I don’t know about the rest of you, but I went from perfect to fucked essentially overnight. It was as if a switch flipped off. I don’t think that mirrors many other complex chronic health issues such as cancer, alzheimers, etc.

I’m not providing false hope here. That would be cruel. I am telling you that we are in an age when the technology to fix this is rapidly evolving. The advantages CRISPR provides over other gene based therapies alone is tremendous. It’s only a matter of time, and not as long as you all speculate, before this can all be used to benefit us. The science will take care of itself.

What we need to be concerned about is figuring out PFS. Raising awareness, getting funding and getting studies conducted. I don’t dispute that it is a complex disease but I’d like to point out, once again, some differences between PFS and other chronic health issues:

  • It seems to be much more fluid. There are cases of patients who’ve had the disorder for a very long period of time seeing complete temporary recoveries with antiandrogens. You don’t see people with cancer or alzheimers getting a reversal, even temporarily, from taking some supplement or eating some food

  • With regards to whether this would be considered a serious illness, and therefore one of the earlier ones to be treated by CRISPR, I’m inclined to think that it would be. Severity varies from some minor libido loss to your entire body being a mess, and in theory, it does make you much more susceptible to other chronic health issues, so I think once it is understood and acknowledged, it will be taken a lot more seriously.

Also, why don’t you focus your efforts on working with the community as a whole on existing projects? We’re not a huge community as it is, and anything we do, we’ll be able to do better with your help.

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I think your line of thought is too simplistic, too many variables that have to come out ‘‘positive’’. Like: ‘‘Technology is going fast, we just need to find the etiology, it’s only a matter of time (and less longer then you all think) before CRISPR can be used for this.’’ But let’s agree to disagree. We can go back and forth endlessly with this. In the end we are both speculating. I hope just as much as any person here that your are right.

About your remark working on existing projects. I have done all I can do here. Also I am trying to start PSSD research, because we aren’t even sure if the same exact genes have been altered in PFS and PSSD.

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Nobody is telling them that it will be solved soonish, Paul told me it took 18 months to start seeing some improvements and yes not everyone recovers that’s also a fact and was the case with the German teacher I spoke with earlier after 5 years off the drug. It’s a disease and I understand the complexities surrounding it but the people coming here are already in a fragile state to be told there’s no hope is a hard pill to swallow and could tip them over the edge that’s just my two cents worth but what heck we’re all on the same ship together let’s just support each other and do the best we can, we can’t do anything more than that.

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The reason my line of thought re CRISPR appears to be optimistic, is because I’ve had every reason to be. I’d like to share the story of why I believe in it.

In my first year of PFS, someone told me that CRISPR would be what fixed us. I was suicidal, and as much as I wanted to believe it, I couldn’t. My heart sank every time I read an article or a paper published on why CRISPR wouldn’t work. But this person, despite being in a much worse state than me, seemed to be unfazed. He told me it would work out, every time we discussed a problem re CRISPR. I didn’t believe him. Then over the next year, a pattern emerged. Every couple of weeks, an article or scientific paper would come out talking about why CRISPR wouldn’t work out or why it wasn’t viable, and like clockwork, a few months later, a solution to said problem would emerge. Time and time again. And I promise you, if you take the time to follow the history, you’ll see the pattern yourself. If you keep up to date over the next year, you’ll probably experience the same pattern again.

I can’t guarantee you that these are both the same disorders. But as someone who’s experienced both, I’m inclined to say that it is. A few days after the first time I took fin for a few days and came off, I had sex with my girlfriend. It was the first time I finally understood why people were so crazy about sex. It was the first time I came without having to finish myself off. I was 18 at the time, and every other time I’d had sex before that, I could never finish, regardless of how long it went on for or who it was with. I felt much more driven to do things and could focus on tasks again easily. I don’t think that was a coincidence.

What is Paul taking?

I have been arguing that we don’t need to discover the etiology of PFS to find treatments with rat studies. This is a much faster route.

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TRT that’s about it and I agree but how would you induce a rat with PFS?

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Yeah but without the etiology we can’t make rat models.

We can induce PFS the old fashioned way. I bet we can get a 10 percent PFS yield with an on and off regimen. But even with a 2 percent yield that just means more rats.

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Yeah but it appears there’s a genetic susceptibility to PFS and since all rats are genetically engineered to be the same, it’s basically impossible for any of them to get PFS without all of them getting PFS.

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Highly doubtful. Gotta try it to be certain. There is evidence rats in studies have gotten PFS - they have failed to recover sexual function after stopping dutasteride - ie they have permanent side effects.

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Interesting, can you link me this paper please? Haven’t come across it myself but would be interested giving it a read.

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I can’t die because of my son.
I live in hell day by day.

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The genetic susceptibility is having abnormally high rates of DHT I know that’s the case with me.

Depending on duration of treatment so 1 day then

I was one of the guys that had no big problems with finasteride. Stopped hairloss, was fine.
Then fucking silly me read in a stupid german hair loss forum about cycling fin to maintain its effect.
Ive done this 3 weeks on 1 week off regime only 2 months and CRASHED.
Before i took Fin 2 years without problems.
Im very sure that an on off regime can give enough rats pfs

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I’d predict that thousands of men will be inflicted by this if they ever pull it off the shelves the syndrome only seems to happen when you stop the drug.

Many people get the syndrome after ceasing. It is talked about in this German-language documentary, from an SSRI angle:

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I believe it’s coming true for me

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