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

General Discussion
#207

On the point of many chronic diseases being researched ad nauseum, yet cures never coming to fruition, if this was 20 years ago, even 5 years ago, I’d say 100% that it’s a pipe dream to expect a treatment for an obscure chronic disease like we have to be discovered by scientific means. With that being said, diagnostic and disease modifying technology itself is evolving in general, so that is where the hope lies in my opinion. The technology may be available in time to do something about this situation, IF the situation is understood…

Now, that doesn’t mean we should put all of our eggs in one basket. The community should help accelerate research, but we should also continue to try alternative methods, as there may be a greater chance of finally finding a solution through alternative methods despite these “methods being tried for 15 years”.

Some unconventional approaches that may be of interest that weren’t really discussed in mainstream until relatively include:

-fasting
-keto / paleo / autoimmune-gut repair / carnivore
-psilocybin
-ketamine
-wim hof breathing
-shockwave (https://pubmed.ncbi.nlm.nih.gov/31187929/)
-cold showers (https://www.whatisepigenetics.com/exposure-to-cold-temperatures-can-change-our-gene-expression-and-fat-cells/)

Even if few have recovered from these conditions, I doubt many have gone to truly extreme lengths (not talking popping pills and taking creams) to explore certain unconventional modalities which require high levels of dedication and commitment such as months of strict dieting, supervised fasting, and a complete and holistic approach that lasts for months on end.

I am guilty of being one of the members who tries holistic approaches but hasn’t really stuck to them for very long periods of time. I was able to stick to the Kharrazian diet for 1 month for example, and saw some benefits such as more nocturnal erections and better bowel movements, but I did not stick to this for months on end, AND keep low stress, AND meditate, AND run every day. You get the point…

As a summary, let’s continue to do what we can as a community but also as individuals.

5 Likes
#208

Right now almost 100% of the talk here is about miraculous home remedies that have never worked. Surely you aren’t worried that there is going to be too much focus on getting research started and not enough on cold showers, psychedelics, and cat tranquilizer.

4 Likes
#209

Pls stop telling people what to do and go ahead and do it yourself. Thanks.

1 Like
#210

U can’t imagine the level of muscle weakness i suffer since that last 1 mg dose. I can’t lift a grocery bag without struggling and u are talking about running. U are lucky that u can run. I guess this forum should make 2 different categories: one for just mild sufferers who are still functional enough and the other for severe sufferers who are bed bound (or atleast struggling to survive) with physical and mental problems from this disease. The 2nd category is being highly neglected here and these are the people who lost their lives. Every now and then a recovery from a mild case appears here from something like tribulus and the severe sufferer mimics it and gets even more worse.

3 Likes
#211

Yes, everyone here should do things “individually”. The term “community” is just for the name sake.

#212

you aren’t going to get people to do stuff by shaming them constantly and preaching endlessly

4 Likes
#213

U are a follower of cdnuts ain’t u? No one is preaching anyone here anything. @vkg1 requesting here just to focus more on research than following fad diets.

2 Likes
#214

Unfortunately, there is a very small number of people on the forum that have the personal ability to construct and organize research efforts. Prob 99% of the others do not so they focus on doing whatever they possibly can to improve their own quality of life. But it is very demoralizing and frustrating to constantly tell the 99% that we should be “disgusted” with ourselves bc nobody is doing any research or anything and they’re focusing on their own cures. Maybe that gives you some more perspective.

4 Likes
#215

Ya requesting by shitting all over people for “not doing anything” constantly while producing virtually zero results himself

I ask people to contribute too

Without being a little snobby bitch about it

And how am I a follower of cdsnuts for saying this?

4 Likes
#216

All of us should be putting as much effort as possible into public awareness, outreach, and any available even more direct ways of facilitating scientists starting research. The longer we fail to own up to this responsibility and precondition to recovery the more all of our lives are ruined. None of what we have been doing for the last 15 years has achieved anything substantial besides making a lot of guys worse and giving them false hope that inevitably collapses years later leaving them in terrible spots in their lives.

If all the effort and expense that’s been put into broscience tail chasing all these years had instead been put into satisfying the preconditions of scientific research into our condition then we in all likelihood would already be in possession of effective therapies if not an altogether cure. That’s a disaster.

If we can’t recognise the faults in our approach then we are consigned to a future that’s the same as our past – tragedy and suffering.

1 Like
#217

I think you may want to ask yourself whether you think you’re having a positive impact on the community with the things you say and whether it is constructive and likely to improve the state of the forum.

But then again I’m asking myself this question right now and you don’t seem to be receptive at all so I’ll just drop it myself.

3 Likes
#218

I think the answer to that question is clear. Do we repeat the last 15 years or do we find out what PFS is and get a cure? The latter will never happen unless WE do what it takes to make it happen. No single person can do it alone. Getting research started needs to become the focus of the community at large.

#219

Hey @vkg1

Does this mean you’ll come on our upcoming video podcast? I’d love it if you would consider!

Please reach out via PM and we can talk about awareness and advocacy projects you can contribute to.

Best,
Mitch

7 Likes
#220

I might but have the same privacy concerns as anyone else. Will look at what it is about. The goal here should be new ideas and wide achievement of things that facilitate research, not singling out individuals for speaking unpleasant truths.

#221

Man plz do consider about doing it. I don’t think u live in a conservative country like me to have such privacy concerns. Can u lose ur job if u do it like i can? Plz set an example of what u have been vocal about. Research is only possible if this condition is even recognised.

2 Likes
#222

Yes I can. It’s good you are trying to get people to participate, don’t focus on me though.

#223

It’s OK, he won’t do it bc of privacy concerns but he’ll tell everybody else what cowards they are for not participating in the video project.

2 Likes
#224

Forget all these useless arguments which bring nothing good to you and put aside the money for future research.

If you don´t wanna go public with this issue it does not make you a coward. Nobody is coward for keeping this issue private. I have not told anybody. I abandoned absolutely everyone besides my family members and I just live in my depressed, PFS-focused universe without any joy.

Strictly rationally, people do not go public because they would lose anonymity, yet it would not make a difference in solving what PFS is. That is the fact. At least this is my mindset. Again, I might be wrong.

I absolutely admire people who are willing to speak publicly about their PFS symptoms. I kind of understand that you have probably come to the place, where you can clearly see what really matters and what does not in life. I am not there yet. The vast majority of us are not there.

The way I see it is we all should be indescribable grateful to those few, dozens of courageous PFS sufferers, who go public with PFS. Yes, they do it for themselves, but at the same time they are also giving hope to every one of us.

The rest of us, since we are not strong enought to talk publicly about PFS (maybe yet) let´s do 100% of what we can do. Which is:

1) Filling up the survey

2) Putting aside money for future research

2 Likes
#225

Video project isn’t the only conceivable thing to do to facilitate research. No one even knows if it will be useful at. We should be thinking of all kinds of things. The goal here isn’t to think of reasons not to do anything. It should be just the opposite.

#226

Apologies if it felt I was singling you out @vkg1 - that wasn’t my intention. There is a host of projects we’re working very hard on at PFS Network, and even posted recently about research we’re hoping will come to fruition later in the year.

There’s plenty going on, it’s just not always obvious, and we desperately need contributors to existing projects rather than creating new ones.

Best,
Mitch