Everyone has been sitting and waiting for Baylor for 7 years or something thinking it would come out in a few months and that it would yield a cure. It never even came out.
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there is no “key study” but a piece of the puzzle.
one of the mods helped design the study, so of course it will have valuable information if it was not corrupted.
however, we cannot rely on baylor alone, hence why we are raising more funds to do other projects.
we also have our own 23&me DNA project, you should contribute to it, it would help a lot
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Of course it’s the key study. If a full epigenetic analysis of a wide cross-section of PFS sufferers isn’t a key study, I can’t possibly imagine what makes the cut.
The 23&Me project will at best shine light as to whether there are any genes which render people more susceptible to contracting PFS - as a preventative measure I can certainly see the utility. And I feel that’s a best case scenario. Likelihood of unearthing such a correlation would be rather low given the limited part of the genome being analysed. Either way it will say little about our current state and nothing about the epigenetic changes which are likely to have taken place.
Nothing comes close to the Baylor study in terms of breath and relevance - it’s no small reason people have been holding out for it’s arrival. It’s because it’s super important.
A few members have proposed doing something which mirrors the Baylor study. I consider this to probably be a mighty waste of money. It would only be worth doubling up if we are very certain that the Baylor study will not publish. Otherwise we’d have to be fools to waste resources on doing something which is likely to have already been conducted.
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7 years and another years…It’s hard to wait.
They say it’ll come out soon every time, but now I can’t believe it.
But after seven years of research, wouldn’t there be any success?
I would like to ask Awor and Axolotl directly, but they are busy and can’t ask because they are really grateful for the effort for us. Anyway, I’m really grateful to Axolotl and Awor.
I am a 26-year-old man from Korea and I am still young, but I am really sad to spend my youth like this. But we live with hope because there are people who are working for us.
No one knows what the future will be like.
Wouldn’t there be a conflict like this if the management team could at least give us a rough idea of when the research will come out?
I think that some people want to downplay the importance of the baylor study because it would be devastating to admit that if baylor yields nothing, the foundation has made little progress despite the best of intentions in the 7 years since its founding. A large sum of money (1 million USD) would have been deployed and no significant progress achieved.
How do you assess such a situation? Maybe 1 million USD is a large sum for the community but a small sum for the problem we are facing. These kinds of questions and conclusions are tough to face.
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I think it is unacceptable that in 2020 we still don’t know definitively the answers to very simple questions about PFS that are easily answerable with little money. These questions are cornerstone questions that will determine the direction of future research, as well as inform us at least a little bit about treatment options.
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Is DHT tissue concentration in the penis of people with PFS normal or reduced? This should be easily testable for little money. The answer will be important because, if DHT is low, it will for the first time provide a potential cause for shrinkage and also for the overexpressed androgen receptor in the tissue.
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Is our 5a-reductase broken - in penis tissue and elsewhere? That could be answered by testing the gene expression of SRD5A2, similar to Melcangi’s latest study. If so, this would explain low DHT in tissues.
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Is our 5a-dihydroprogesterone low? This is another product of 5a-reductase with important functions in the nervous system. Allopregnanoline is produced from it.
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Do we have detectable neuropathy - reduced sensitivity of the skin, and what is the source of it - in the nerve endings, in the larger nerves, in the spine or in the brain? Many people I have talked to and myself have this symptom. This is an easily answerable question because neuropathy is measurable, unlike many of our other symptoms.
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Going towards questions that require setting up an animal trial but are still straightforward and relatively cheap as far as research goes: Do a fraction of mice given a single dose of finasteride get PFS? As far as I know this has never been done.
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What hormones and genes are affected in mice with PFS? Once there are a couple of mice with PFS, a lot (everything) can be tested in them to uncover the etiology of the disease, which is much harder and more expensive to do with humans.
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There are many PFS people but perhaps even more PAS and PSSD people with extreme joint pain. Does systemic DHT administration (transdermal) relieve the joint pain, and if does, what does that tell us about the disorder? I know DHT does wonders for my joint pain but it is important that this result is confirmed in other people as well.
The reason we have not answered these questions and done these tests is not for lack of money.
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@Sibelio, an excellent list of highly relevant points of research which would do much to enhance our understanding of this condition. It’s amazing some of them haven’t been the focus of investigations to date, or even seem to be on the radar.
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Why would it be amazing if no one here is trying to organize new studies or even contribute much to the few studies that are already ongoing? By what mechanism do you think those things should have been studied by now?
No initiative can happen on this forum unless the admins support it, and especially if they oppose it. You cannot fund-raise for example. I hope that answers your question.
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Why don’t we put that list up somewhere and have a point by point discussion of what can be done and who will do it? Maybe there should be an Action forum somewhere.
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How do we check for methylation of the SRD5A2 gene? Does anyone know
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I think @Luckydevil is focusing on Accutane specifically. I am willing to interview for future videos about anyone affected by this syndrome from any drug. It will be a couple months before I can begin though.
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Hey I’m just going by what awor and axo said.
They said it’s important but not to put all eggs in 1 basket.
You should contribute to that as well
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Bisulfite sequencing, but it’s totally impractical for one person alone to have it done. Plus, good luck to you finding someone willing to do it. You should also consider that not all of the PFS patients in The Milan study were found to have abnormally high levels of methylation of the 5ar2 gene, so it doesn’t seem to be causative of this condition.
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Hate to be the bearer of bad news, you would be better off to forget about it.
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I’m looking to build up a profile to show proof of causation. Let’s say there’s proof that this gene is methylated would you propose it would useful in court or would it be thrown out before it even reaches trial
That’s the problem. Many assume that the management team here has more control or knowledge of the situation that the typical forum dweller. We’re as upset and confounded by the delay as anyone else.
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I would be really really suprised, if baylor would show anything but for the usual high androgen receptor density…(At least anything else would blow my theory about this disease being completly neurological in origin away)…I really cant get in anyway, why high dose TRT wouldnt work (sexually), while all other androgen related symptoms just disappear (Talking about oil skin production, dry eyes symptoms, Beard growth etc…)