Updates about upcoming PFS research: Collecting new samples

General Discussion
#1

Dear friends,

We are pleased to bring you the latest updates about our upcoming study at the Institute for Human Genetics, University Medical Center Schleswig-Holstein.

While we hoped to use samples collected in Baylor College of Medicine’s previous study, unfortunately this will no longer be possible due to legal reasons. Patients who participated in Baylor’s study did not provide consent for their samples to be used elsewhere.

We had been working with researchers at Baylor to seek their institution’s approval for several months, but due to strict protocols, the university denied our application.

While this may appear disappointing, please rest assured that our study is still well ahead of schedule, as we reached our fundraising target four months early. This also presents a good opportunity to collect new samples, and prioritise samples which will perform best under lab conditions using our clinical survey data. Analysing optimal samples will give this study the best chance to deliver favourable results.

We are working diligently with researchers to develop a plan for collecting new samples, which we will have more updates about soon.

Please note while you are free to ask questions, we do not have specifics about how new samples will be collected at this stage. We will not have answers for such questions.

With gratitude,

The PFS Network team

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#2

thank you for your update.
I’m not surprised at all. I don’t want to make too much speculation. I just want to say an old Chinese saying, “A loss, no bad thing or a blessing in disguise” We have more serious cases, including axo and Ryan. The only regret is that this may increase some costs.
（Sorry, I just want to make a joke. I don’t mean anything bad, But I always feel strange. In any case, frustration is the only way to success. Let’s find the problem, try to solve the problem, and then face the next problem… I really wish I have a lot of money）

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#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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