Please lets be real in this thread. There are countless other threads for the motivational stuff. Simple question, is there anything in the very near future that could help us?
Keep in mind, no is a very valid and valuable answer too.
1)Sage-217
2)Some sort of demethylating therapy that might be found once we figure out what’s going on.
3)working on my ability to adapt and progress professionally/individually till then without making excuses
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Thanks mate, do you have any ballparks in mind for 1 and 2?
Sage comes out late 2020 or early 2021
- depends on a bunch of things, maybe individually or all together:
- Baylor study
- 23&me (please submit this project if you haven’t so it can be done quicker)
- 6-7 figure funding which the mods are working on using our surveys. Please encourage folks to take the survey, especially accutane victims
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Will we have to wait another few years once Sage is actually out for the patent to expire and there to be an affordable generic version? I’d imagine the brand name would be unaffordable
What is sage 217? And how do you know it can help to us?
It’s basically artificial allopregnanolone from what I understand
Like TRT for your neurosteroids
Helps us because we have nonexistent allo
The foundation is keeping an eye on it, so they think it might help us.
I hope it helps with my mental sides
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I didn’t know the allo. thing, have you ever did a test for it? Is it low among pfs patients? Hmm.
Maybe it can help us, that would be amazing.
No clue about all that tbh
I haven’t done a test for it but a test on Pfs guys has been done and we have drastically low allo.
Makes sense since a lot of us have brain fog and emotional blunting
Would it help with sexual sides?
So in total the outlook is pretty much hopeless currently.
Sage might just be smoke and mirrors since we dont know what it does for us and anyways 2021 release means ~ 2025 in reality in a worse case (which is what I am moving forward with when considering timelines)
Demethylation would even have a chance of working if we understood whats happening but we don’t and neither are there studies underway to do so.
You’re asking me as if I’ve used it lmaoo
We will find out soon brother
Actually I think the sage release date is accurate. They’ve been on an accelerated course and have been on point thus far.
And Early next year the progress in terms of finding solutions and funding will be much faster and transparent than it is now. If anything the rocket is about to launch soon
Didn’t mean it like that lol. I was hoping that someone in this thread might understand the science of it and could explain it to me.
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I see. So the thing is, whether it helps any symptom at all is still a guesswork by anyone here from what I’ve read.
It’s just intuitive to see that it can help with the neurological sides
I know people dont like me saying this, but this assessment is correct. @lakehouse, I know you want it to be different, but the chances of anything being discovered that will help us within the next 5 years are below 1%.
Saying it is fine. Reiterating the same bleak sentiment over and over and over and over again in multiple threads is tiring and I’m not sure what it achieves. I certainly don’t think it’s helping; did you say you thought it would contribute to more people donating to the foundation? You ought to re-examine that logic if so.
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Not sure why you keep trying to force this opinion on to me.
We both know we don’t agree, stop trying to convince me otherwise and see how things pan out
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Lol. I am not forcing anything on you. You just perceive a different viewpoint, and a negative one, as a threat because you are not convinced of your positive spin yourself. I couldnt care less what opinion you hold.