I don’t agree that this web site is useless. If people would actually do something then we could finally make research happen and get a cure. The next ten years do not need to be the same as the last. If you have some info that awor and axolotl already have everyone covered and all anyone needs to do is just sit then do share, though.
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The real problem is that we have NO REAL references! I tried several times to let the doctors and my family read the forum and each time they answered “yes, but do you know who the people behind the moderators’ avatars really are?” or “who tells you they are real people?” If I think about it, it’s true. Who looks at us from the outside, can only read niknames that they write on a forum, without noticing that behind them are REAL PEOPLE. An outside observer will read the pseudo mad scientists’ posts that improvise absurd cures, based on tons of useless supplements (in most cases, they even make them irreversibly worse). We will never get anything if we continue like this. But do you think what would happen if only 20 of us went to demonstrate in the street? We will certainly get much more attention than we have achieved in decades.
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I didn’t say the website is useless.
Constantly screaming about why people aren’t doing anything, is useless.
There will always be a large majority that won’t contribute to make the real progress.
A medium amount of people that will try to go explore in their own ways with different theories.
And then a really small community that understands all the technicals, unknowns, as well as the practical steps involved.
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I agree that the video project is great. The mods have stated that they are working on an explanation for why PSSD and PAS are closely related to PFS. Once they or someone else with medical know-how has produced that I believe perhaps our biggest focus beyond what is already listed in the action guide should be to contact as many former users of those drugs as possible to get them to produce videos.
It would also be nice if we could find some famous and/or obviously high credibility public figure to share their story publicly. That way we could point people to that story as a way of getting their foot in the door to learn about all the others who have been affected. There is no question that the average person will assume that we are all hypochondriacs. That image is compounded by the fact we have overwhelmingly only been sitting here ruminating and bitching (like hypochondriacs) For over ten years, rather than coming across as serious people with a real problem.
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Are you saying that you are satisfied with the established and current state of progress?
Do you think we are in a better position now than we were ten years ago and do you attribute significant improvement of our position to the work of forum posters here? I would love to hear what specific achievements made within this community (aside from work of mods of course) have been most notable to you.
last ten years no
last 2 years, yes, factoring in the amount of resources we have.
we are making a push for institutional money, which is the most notable milestone for me.
“asides from mods” — youre obssessed with that not me.
you are not accepting the reality that most people won’t do anything.
i am accepting that fact, so i am not bothered with it, as i am willing to work with what i can.
This conversation feels a little bit like you two could be good friends, but you’re getting caught up in the details of how someone said something.
What’s the best outcome from the conversation for both of you?
i acknowledge that @vkg1 has great desire and drive to push us forward by making the most of this website and the people that come to it.
i can respect that. if he wants to try and push forward by figuring out how to convince people then i have no problems with it
was just voicing my opinion that i think a more efficient way is already being taken. but hey man nothing but respect from me. and we are both on the same team as far as i can tell
Yeah, you are right that I don’t accept that a situation where you have 5 guys committing their lives and tens of thousands of hours of work while no one else does anything of note (you can’t list anything?) is optimal.
What’s your point in saying that you accept that? Just curious. Also still curious to hear what the big institutional money that you say “we are making a push for” (by which I guess you really mean the same couple guys always doing all the work while nearly everyone else is too cheap to even contribute data for?) is.
This is going way off-topic.
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The mods are using the survey data to get Large 7-8 figure funding that we can use to start our own studies which wouldn’t be slow like Baylor. I believe the initial process to source might have started
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That’s sort of small to medium size but at least not bad for one study. It would be good if the community could do something as well rather than only talk among themselves while the mods do all the work. That way maybe we could get multiple parallel projects that in term stimulate further multiple parallel projects.
What the heck that’s so exciting!!
7 figures is enough to pay 2 good scientists to look at something for one year. 8 figures is enough for something like 3 scientists and a couple graduate students to look at something for 3 years.
Yeah, still don’t know how long it will take to actually get it, but we are just getting started 
Maybe they will only need 2 scientists and one year if they have a good idea what they’re looking at.
Ultimately, it’s only one study. One study might be enough to provide us some useful information, but in order for the syndrome to be taken seriously enough to warrant the level of funding necessary to provide a therapy and/or medical community recognition as real, we would need about 5-10x that many agreeing. A study working out now would be the beginning, not the end.
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No offence but you’re just making up numbers. What do you suggest then? If you want everyone to do more what do you want them to do? I’m sure everyone is open to ideas. I would like to do more also. No one knows exactly what it will take, but it will be a lot easier to make a cure than to find the problem imo. Crispr is being developed now in the ways we would want it used supposing the methylation hypothesis is correct. People say it’s going to take years to use but the clinical trials are rolling out and assuming nothing goes wrong scientists are going to want to be the ones to cure things. Also people are even walking around FDA regulations to use it. I don’t know I prefer to be positive.
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The guys with a better technical understanding (awor and axo) do admit that we will need a couple more studies at least. Doesn’t mean Baylor wouldn’t give us some good direction and possible therapeutic treatments.
Also doesn’t mean they will take as long as Baylor. If they are set up with contracts in place and not gone the academic route it would give us the data lightning quick in comparison to Baylor from what I know.
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We need to do everything we can to get all affected groups unified and drawing public attention. Then we can get funding for studies. Once we have a multiplicity of studies that show what we have is real, then we can get funding for developing therapy.
We should have embarked on that journey a decade ago. Instead we sat, complained, assumed that because we were victims and the world owes us then someone would automatically come to the rescue if we just thought positively, told ourselves we knew a lot reading about herbs on the internet and that everyone who had tried and failed with those herbs previously was just doing it wrong, and now we are at a point where a generation will have lost the opportunity to have healthy relationships, kids, and purpose in their lives beyond solitary entertainment.
Generation after generation will suffer the same fate until we change and do everything in our power to unify, get the word out, supply scientists with data, get their work funded, make the research happen.
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