A PSSD/PFS researcher's opinion on supplement trials

General Discussion
#1

Source: private conversation with a PSSD/PFS researcher. We were talking about a grant call for personalized medicine.

ME: "Unfortunately, like many diseases without treatment option, our community is suffering from a religious-like “supplementomania”. Some claim cures, improvements, but there are no consistent patterns (apart from high-intensity training, keto, Tribulus and maca, but these things only seem to work in a few people, maybe it’s a coincidence).
I think all these supplements might interfere with biochemical data from patients during clinical trials, so maybe a tracking app of what different supplements the patients take might be helpful to clean up and create new data.

RESEARCHER: "This is an ERa call on development of clinical support tools for personalised medicine implementation, your idea of having a tracking app for supplements use could generate interesting data and fits well with this call…

… About what you mention below, I fully agree and sometimes I really get surprised by this folk medicine among the community. I’ve read many messages over Twitter, and think this is not right. There must be a science-oriented joint work whereby all possible treatments (experimental or not) must be researched before advertising these miracle solutions – believe me, I’ve seen this, people with health issues believe in anything they think might be helpful. This is dangerous and may affect their health – placebo effect if you know what I mean."

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#2

What’s being proposed here is smart

I would like to add that if we could find patterns in our labs that could provide clues/warnings that a certain supplement or protocol is more likely to make a particular persons case better or worse could also prove to be beneficial.

For example I know that my blood DHT is high, that my saliva DHT is low and that my urine DHT is high. So obviously I’m producing enough DHT at least in certain areas. I know that I’m binding most of that DHT because Saliva is showing free hormones. I know that I’m peeing out high amounts of DHT in urine. So I probable don’t want to increase DHT. I’m low in Saliva estradiol and I’m getting rid of low amounts of estradiol in my urine.

If we had organized data showing who gets improvements/better or worse from what we are still shooting in the dark unless we had pre protocol/supplement labs that go along with each persons experience on a particular protocol/supplement. Because without the data from the labs we would never be able to connect any dots such as ok three people prior to taking or trying X all had low/high X. I think where we want wrong (other then taking a DHT inhibitor of course) we have been looking for generalized answers and solutions across the bored. If my system is binding most of my DHT and I’m getting rid of high amounts of DHT in my urine and let’s say for example your body is doing the exact opposite with your DHT then in my opinion I don’t think we should be doing or trying the same things. Same with estradiol. If I’m low in estradiol and I get improvements by increasing estradiol and if you are high in estradiol and you get worse when increasing estradiol then this is significant. I believe that these patterns can be found if we looked. We just haven’t looked at it like this.

#3

I think the worse the medical condition, the more people want to grasp at crazy home remedies. The psychological trauma of facing having your entire future destroyed, never being able to have a family, never being able to be in a loving relationship, etc is so terrifying that people can’t even really face it. They don’t even really want to know what their situation is. They just want to busy themselves with ordering some herbs and googling how to “boost” libido. Sadly, ironically, I think the more a science-based, rigorous, proper medical therapy is needed, the more people want to tell themselves the opposite.

There’s a collective somewhat wilful failure to really engage how serious our health condition is and how critical it is to pursue a scientific understanding of it before people have surpassed all the critical junctures in their lives. People are horrified and I think fear has driven reason out of the community and produced a kind of collective 20 year head in the sand situation.

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#4

Yes.

Ideally such kind of “tracking app” would be connected to a giant professional patient registry where patients can upload medical results such as blood work.

The day will come that we will have such a registry.

It’s an essential step when trying to solve any disease.

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#5

I like what you have in mind

Yes there is the CDnuts generalized method and it has worked for some people. But I think that trying to treat PFS from a generalized perspective has been a bad idea for the most part. We need individualized approaches. Especially for those of us that got hit hard.

#6

Even more importantly, in order to really find a method we first need whats going wrong in PFS. Self trials with supplements won’t bring this results, on the opposite it will distract from really pushing forward PFS research and it will use up private financial resources that could have been invested in this kind of serious research

#7

That’s the typical smug, prejudiced statement. It’s nothing but their own religious beliefs in simplistic theories of “depression” and “antidepressants”, and the stubborn disregard and downplaying of any and all side-effects, that causes such issues. When they have no arguments, they go the authoritarian route, as always. Also, supplements can be researched, it’s not all just Maca anecdotes, and doing nothing doesn’t help at all, no matter how long one waits. If it were all as simple as some simple, smug statement like that, indeed there would be no attempt with supplements to do anything, it’s not original or unexpected.

#8

I also think that it would be a good idea to have a global registry of patients although I am not sure of the processes by which that could happen. Maybe I’m being more fatalistic in one aspect, but beyond the obvious search for a cure, I dearly wouldn’t want any of our lives to pass without a proper evaluation of finasteride’s role in how any future illnesses could manifest against a control group of the general population. I use our potentially increased risk of dementia as an example.

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#9

I don’t think that’s what he is saying here. Of course supplement have an effect. But it needs and organized way of evaluating them. Currently we have too many confounding factors and we don’t know who has PFS and who has not.
During clinical trials additional supplement intake might messuo data like microbiome data.
And of course self trials with some compounds need to be done with caution