u/katsudon014

As the title says, I’m thinking about contacting a TV program that features dramatized reenactments of real-life stories and asking them to cover my experience with PFS.

The program often covers rare diseases and other poorly understood medical conditions, so I think there is a good chance they would be interested. That show is quite popular.

At the end of each episode, a medical expert or someone knowledgeable about the condition usually explains the illness in more detail. If this were to happen, I would like someone from PFS Network to appear and explain PFS.

I haven’t submitted my application yet, so I don’t know whether it will actually happen.

Melcangi’s mouse experiments use mice that do not actually develop PFS, so they cannot be considered definitive proof of PFS.
I think the research being conducted by the PFS Network could lead to the creation of two different types of mouse models.

The first would be a genetic mouse model based on the variants identified by Tampere University. These mice could be treated with finasteride to determine whether they develop PFS-like symptoms.
The second would be an epigenetic mouse model based on the molecular changes identified by Kiel University. In this model, researchers could induce the same epigenetic alterations found in PFS patients and examine whether the mice develop symptoms consistent with PFS.

The Kiel University approach would be particularly valuable because it could help establish a causal relationship between the epigenetic changes and the disease. This would be a major step toward recognizing PFS as a formally established medical condition.
Epigenome-edited mouse models could also be highly useful for drug discovery and therapeutic development.

The ideal scenario would be to treat the Tampere University genetic mouse model with finasteride, confirm that the mice develop PFS-like symptoms, and then determine whether they also exhibit the same epigenetic changes identified by Kiel University. Researchers could then assess whether these changes lead to the wide range of symptoms observed in PFS patients.

Of course, mice and humans differ substantially in their physiology, so there is no guarantee that these models would fully reproduce the human condition. However, studies involving large numbers of PFS patients take many years to complete, and animal models could provide a much more efficient way to investigate the mechanisms underlying the disorder.

I wonder why I've never seen anyone here who developed PFS while treating prostatic hyperplasia. When I went to see a urologist after developing PFS myself, I heard about an elderly man who took dutasteride for BPH and developed sexual dysfunction. However, the doctor attributed it to aging.

Finasteride is a treatment for BPH too, so figuring out PFS would definitely help those patients. Even so, it’s shocking to me that we don't see more BPH patients struggling with PFS. Does it just get brushed off as a normal part of aging, I wonder? That seems to be what happened in the story I heard.

Epigenetic changes are known to differ depending on the part of the body.

In the study from Kiel University, they analyze cells taken from genital tissue, so I assume they can identify abnormalities in gene expression in that specific area.

However, wouldn’t that mean abnormalities in other parts of the body might not be detected?

It seems clear that the brain needs to be examined, but to fully understand the physical symptoms, wouldn’t it be necessary to analyze multiple tissues throughout the body?

Based on the research from Kiel University, even if the underlying cause is identified, developing a treatment drug would likely take more than a decade. Drug development is also extremely expensive, often costing several billion dollars.

While AI has the potential to significantly reduce both development time and costs, it would still require a considerable amount of time and resources. Drug repositioning is the most efficient approach, but it is unlikely that an alternative drug will be found easily.

In my view, leveraging systems such as the Accelerated Approval program and the Orphan Drug designation in the United States could help speed up the establishment of a treatment.

In any case, once the cause becomes clear through ongoing research, drug development must begin immediately. Otherwise, a treatment will never be realized.

To cure PFS, a curative drug is necessary.