Updates about upcoming PFS research: Collecting new samples

General Discussion
#3

We don’t think this will increase costs but we aren’t committing to anything at this stage.

We’ll get more concrete updates to you as we can.

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#4

I am from Latin America, how could I send a sample of mine? And where would I have to go to have a sample of my tissue taken?

#5

I don’t think it’s easy. Medical research activities need strict ethical review. I personally guess that if samples are really needed, they should be collected within the EU, unless you can go to Europe

Patients in Germany and Italy may arrive by train in a few hours. I’m looking forward to seeing some familiar faces participate.

Or maybe I’m wrong, just guessing

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#6

It would be good with people with symptoms of loss of penile sensitivity, loss of pleasant orgasm, pelvic floor problems and neurological problems, donate tissue, it is my priority

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#7

I am from Latin America, how could I send a sample of mine? And where would I have to go to have a sample of my tissue taken?

We don’t have specific details of how samples will be collected yet sorry.

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#8

Has anybody considered trying to contact the participants from the Baylor study to receive their consent for their samples to be used for this new study. Surely, it would be possible to track down a few of these people. @PeppermintPadthai said he was involved. I’m sure they have contact info for the others.

#9

It’s not that simple unfortunately.

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#11

I am thinking that this investigation is going to begin at the end of this year for the reason of the tissues, I hope I am wrong and that it is not like that, the truth is that I want and we want it to start as quickly as possible because we can no longer stand living like this

#12

Unfortunate news Mitch, but we will keep on fighting.

As you know, I’m open to serve as a donor of a sample. I consider myself among the purest cases of PFS you can find:

  • No mental issues before PFS whatsoever: fortunate youth, highly ambitious, healthy sex life etc
  • Healthy diet
  • No use of medication before 19 days of finasteride 1mg in early 2020 when disaster struck
  • All the symptoms in the book: complete loss of libido, watery semen, severely flat emotions both ways, anhedonia etc, loss of feelings of excitement or reward in general
  • Still functioning at post university level work through rational willpower

Let me know if I can be of any help. I’m in relatively close proximity to Schleswig-Holstein.

And once again, I urge everyone who is able to set up a recurring donation to make our money work for us even in times we feel desperate without hope. A recurring donation is the least straining and most predictable way of donating.

Research initiatives like these are our best bet after 20+ years of unproductive experimenting individually.

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#13

I don’t see AR silencing and tissue loss on that list.

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#14

Yeah I’m fortunate to not have any insomnia either, no panic attacks or anxiety either, just complete emotional flatness both ways (in addition to what I’ve stated). Of course the list is longer and some have a different set of symptoms but these are the most common ones from my experience reading these forums. “AR silencing” is not a symptom to me.

PFS to me seems like a complete lack of androgenic drive, with accompanying physical features.
I never really “feel” a sense of hierarchy either for instance.

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#15

I have penis numbness and orgasms, libido 0% chronic insomnia, I need to donate a sample the problem is that I am from Latin America

#16

I’m a SP victim and I live in Belgium, so close by. I’m willing to serve as a donor as well if the team deems my case useful to the study.

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#17

Thanks to all for your eagerness to contribute. When updates are available, we’ll post them here and via our mailing list.

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#18

Thank you very much for the update, Mitch.

I for one would be more than willing to serve as a donor since I live fairly close to Germany.

If need be, just let me know.

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#19

Any news on this front?

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#20

As much as I am glad what Baylor did (except for the time line which was a joke), I am equally disappointed that they are not able to share the tissue donors/samples of the study. I thought they wanted to share all of what they found out. How can can we now be sure that they share the exact 3800 something altered genes with the scientists who are working for the German study? I just hope this will be the only bad news we will come across

#21

Probably best to focus on positive, forward momentum, rather than looking for things that are both out of our direct control and are unlikely to occur.

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#22

We’re still having meetings to determine the best way forward. We hope to have some updates soon.

I have COVID at the moment and have just started a new job so apologies if we aren’t as active with communication as previously.

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#23

Sorry guys @Greek you’re right, @Sugarhouse wish you a speedy recovery and once again thank you for all you’re doing. unfortunately I was diagnosed with epididymitis and a zyst on my right testicle. Maybe that’s why I am a bit harsh at the moment…life is so unfair.

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