Baylor's research is finished and checked by a medical journal

General Discussion
#187

Hi all,

I notice there’s been dozens of posts in this thread about funding research in the 48 hours since we posted a thread encouraging patients to think about what they could contribute to a potential study we’ll be presenting to the community in summer, alongside the Foundation.

Please, if you haven’t, read the thread. And instead of going back and forth pointlessly here, think about the small things you could do, like volunteering to speak publicly on the upcoming PFS video podcast. No one wants to help a group of anonymous dudes on a forum - it’s just a fact. Humanising the condition will go a long way to generating interest, and we’ve had feedback already from researchers to this effect. We also need more enthusiastic contributors - would anyone like to step forward and help me work on new awareness and advocacy projects?

Also, it’s pointless to sit here and debate what will happen in the future. The fact is, there is still such little understanding about our condition that it’s impossible to know. I’d encourage everyone to think about more productive pursuits than these debates that ultimately get us nowhere.

Thanks.

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#188

I’m not fine with waiting for anything at all. I think we should do everything conceivable, with the utmost sense of urgency, to get as much research going as possible. Yes I think it is crazy to beat head against wall repeating the same broscience experiments that have failed every time for 15 years.

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#189

The problem with saying this over and over again is that you aren’t doing anything yourself except telling people to do stuff. When people have a project they think they can lead, they step up to the plate, and recruit others if necessary. This is what’s going on all the time around here to various degrees.

For the rest of the guys who have nothing to contribute, and I have pretty much hit that point myself, the best thing you can do for yourself is accept the reality we’ve been dealt and live your life the best way you possibly can whether that involves getting psychotherapy, exploring alternative health treatments, or just moving on until something comes up where you can help.

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#190

I do a fair amount especially on Facebook groups and I also point people to awor’s work here at other forums trying to foster a sense of togetherness and collaboration among PAS/PSSD/PFS communities. Here the main thing is for people to start realising that the approach of last 15 years hasn’t worked. This forum is the saddest with the perpetual rediscovery and failure of herbs/trt/hcg etc as if there wasn’t a search function.

#191

every time i look at his posts all he does is preach and complain about not being satisfied without ever leading by example

for example, me and you had our disagreements with going after investors, but im not going to make you understand by forcing it down your throat

ill be legitimately attempting to do this and update you on the progress

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#192

People arent necessarily trying to cure themselves with broscience experiments, just trying to improve their quality of life. I agree that none of these experiments will lead to a cure though. But trying substances to treat certain symptoms and pushing for research can take place simultaneously. So what’s the problem?

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#193

@vkg1 i get everything you say man pure frustration while our lives and time disappears infront of our eyes. Trying to get through each day is no way to live. Sufferers take supps etc out of desperation to bring around some sort of improvement, its for certain none of this works in the severe cases. Repeating myself again, but public awareness is the key however the recent vids are great and all of us should be pushing these everywhere. Things sre starting to happen. We should have been here years ago. I wrote to Louis Theroux today!

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#194

I don’t want to discourage you from doing anything that may help the community (unless it will hurt, which it won’t here), but as a professional investor I do have some sense of what is possible and what is extremely unlikely. If you want to go ahead though, I do hope you’re successful.

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#195

right i understand where you come from

my point is, me and you disagree and that’s it

there’s no preaching going on between us, which is how it should be

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#196

From what I can tell, the paper offered no opinion on the why of the abnormalities, it simply pointed out that they existed. You can give the paper a look for yourself: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7354335/

#197

Actually I wanted to edit my post about this, because I agree we should be very grateful for the people that are researching our problem. And especially the foundation that funds these researches. I have so much respect to the founder of the post finasteride syndrome. So sad that he lost his son, because of this syndrome. The future outcome of all the efforts of the foundation will be too late for him, but it will help thousands of people and prevent even more people developing this syndrome in the future.

The only question I have is, why does it take so long for the Baylor study to complete (7 years)? Is that normal for such a study?

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#198

Of course it’s not normal. Normally studies take 3 years maximum. In any case, no single study is very important at all. It will take a large number of studies in parallel. It’s a tragedy in itself that somehow people here thought that a serial approach would be sufficient. Even if the one study had come out many many more would still be needed. We should all be completely disgusted with ourselves for the last 15 years.

#199

I’m not sure why you believe people here believe in serial studies. Research studies take a lot of time, energy, and resources to get launched and people here are doing the best they can. I’ve said this before, but I’m a strong believer in leading by example. Instead of saying how disgusted you are with other people for not meeting your expectations, which decreases morale here, you would be better off trying to get a study organized yourself and bringing others into the fold.

I’m not really sure what it is you’re trying to accomplish here, but maybe I can help you figure out how to go about it in a better way. The way you are doing this now is you are just upsetting other members on the forum and you don’t seem to be making yourself any happier in the process.

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#200

There is vastly more talk about when “Baylor” is coming out then there is about how to get research going.

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#201

I put forth this as an example of the kinds of things I hoped we could start talking about. There was no engagement. Will be over the moon if we finally at point where that’s changed. Would love it if we could start working on superior plan.

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#202

Ya you’re all talk and no action and have been for years. Anybody can come up with OK ideas and say how they’re disgusted with others for not following them, yet not pursuing any of them himself. They did independently spend a lot of work on that video project though, I’m not even sure that you contributed your own video.

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#203

Haven’t been keeping up. People finally getting to work now? That’s awesome if case.

#204

It’s odd …

But It worked for me and others

U just need to be careful and use it correctly other wise you can hurt your self with it

#205

Wondering where the thread about a potential study is?

#206

Here it is: PFS Research in 2021: PFSNetwork fundraising for research projects with the PFSFoundation in Summer

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