Notna's story

ive heard that our dna has been silienced (from the chief doctor of baylor study)

Crispr is already being discussed on this forum and is apparently used in China.

Scientists have developed a new technique to unleash silenced genes and change cell fates using CRISPR/Cas9

“Genes in cells have their own switches called promoters. A gene is switched off, or silenced, when its promoter is methylated. The team effectively wanted to turn on a switched-off gene.”

sciencedaily.com/releases/2 … 120557.htm

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for the past 2 month the “crushing” fatique has become better. i cant say i have excess energy, however i dont feel as drained anymore as before. I have also been running 40 minutes every day for the past 3,5 month.

Great to hear!

insignificant update: the acne on my chin and around my mouth has finally resolved, it was pfs induced

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do we know anything about this guy? is he recovered?

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Was signed in here 5 weeks ago.

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Also my face and all body is ruines…

I can answer that as he is my brother. Nothing has changed whatsoever. Symptoms have not progressed further but none have resolved.

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i’m so sorry… has he attempted any cure?

What cure? There are no known cures. He has attempted excercise and healthy eating. But of course thats not a cure as was proven thousands of times already.

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Just to give a quick update. Basically almost nothing significant has resolved. Im still suffering from these main PFS symptoms:

  • facial wastage (severe bone! (yes definitly bone), fat and muscle loss)
  • penile shrinkage
  • no semen volume
  • no libido, much less sensitivity, no morning erections, no spontaneous erections
  • easy fat gain (gained 18kg at peak)
  • fatique (however not as crushing anymore as at the beginning)
  • In particular what my brother (who is suffering from pfs as well) and I have noticed, is that there is a servere mental pfs symptom, which is: disconnection from what I call the vital energy of life, which gives you a positive, outgoing, relaxing and confident feeling. This energy is what connected you to your feelings. This feeling is lacking severely and is replaced by feeling like, i suspect, old people do. I do feel like an old guy. This is also what keeps me home at night, when everyone is out there enjoying life.

what has resolved a bit:

  • hair texture is back to normal
  • acne has disappeared
  • sleep problems have resolved completely
  • fatigue is a not as crushing anymore

Anyways, this is definitely permanent, lets not kid ourselves. Invest in donations to the foundation. This is the only way to get this solved. Thanks.

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Lack of life

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Btw, how did u fill all those years? What did u do with life, what do u spend ur days on?

I sincerely believe that once the infamous Baylor study is released it would be possible to target several areas of research. If the objectives are made clear, and the potential benefits properly communicated people will donate. By giving people a ‘choice’ as to where their money will go, it gives them a sense of agency and I feel this will boost the amount members will donate.

It might work if moderators will disclose in LAYMANS terms what the current causal theory is they are working with. With causal i mean, A causes B causes C causes D causes symptom. Not correlation in correlation out stuff, i.e. we looked at 10 finasteride victims and 10 people as a control and here are the differences.

If they could explain how the study would prove or disprove parts of the working theory, or expand on it, people might get motivated to donate.

Has AWOR failed to do so? It’s hard to prove causality of course. But his theory certainly does go through the steps and causal implications. Explain what he has omitted.

He has but A) its not in laymens terms and B) per awor a lot of new information has been integrated into their understanding since 2010.

So basically, I would suggest one of these guys summarize the current understanding in very very simple terms so that anybody reading it even without any medical knowledge can comprehend it. Maybe they can dedicate a separate page for this once Baylor is published.

Well if he has that refutes your oft-repeated assertion that a theory of causality has not been written.

The fact that it isn’t in layman’s terms does by no means lessen its utility nor its significance.

If anything, if it were overly simplified it may make it less rather than more transparent to the medical community.

If all evidence thus far supports AWOR’s theory and nothing as yet contradicts it I don’t see any pressing need to do so as the theory still holds its own unless something comes to light which contradicts it’s tenets.

Axolotl has stated that, at least in regards to the findings of the Baylor study, he and Awor will provide a thread explaining what it means and where it will direct us next.

We will talk about it in detail in a sticky topic including what we see as the next steps based on what the study reveals and what it means for us.

And here

I think it’s worth appreciating the level of technical understanding on this forum generally. That is not meant as a slight - it is simply absurd to assume that the patients would in the main be able to make sense of cutting edge science… @awor and I will explain the findings when it’s published.

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