Efficacy of treatment from the experts - could it enlighten the root cause of our condition?

General Discussion
#1

Wouldn’t it be fantastic if the doctors who have seen hundreds of PFS patients (like Goldstein, etc) could provide us insight as to the relative efficacy of treatment methodologies, which made people better or worse, etc. This could provide massive insight not just into the underlying root cause of our condition but as to what seems to work (and not make things worse) to give the desperate some kind of relief.

It just seems like they’re sitting on a treasure trove of useful data which could have profound implications for the eventual development of an effective and reliable treatment or even cure.

What can be done on this front?

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#2

I agree.

Even if we can’t get this info from doctors, maybe we should compile our own data in as more easily understandable form than the topics here.

#3

The sad truth is that there was no measurable general efficacy. Dozens of people from this forum have worked with these doctors and no therapies with replicable positive effects have been discovered. Mostly, the therapies prescribed by these doctors were some version of hormone replacement therapy, which has been shown do be ineffective if not damaging for all but a small minority (typically lighter case) who seem to profit from androgene supplementation.

I don’t think there is much to learn from these doctors, unfortunately, that we haven’t learned yet. It will be easier to think about and design therapies, when we know more about the underlying factors of our condition. That’s why we have to support the research and wait for additional clues from the ongoing studies.

What the experience with these doctors has shown us is that a lack of androgenes is not out problem. That’s why androgene supplementation usually fails. This discovery has lead to the idea that there is probably a problem with the way our body uses androgenes. The input is there, but the output isn’t. Why this is the case is currently under investigation. So while these doctors largely did not help to find effective therapies, this failure still gave us valuable insights.

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#4

I would beg to differ. I understand that over the years there have been many negative reports as to the use of hormone replacement therapy to treat PFS, with many reporting a worsening of symptoms. Having said that, it does work for some people. The question to be asked is many patients benefit? 2%? 10%? 40%? Why? These figures matter. They matter because they shine light on to the underlying mechanism of PFS. Why do some people notice an improvement on HRT? What can we garner from the blood test results of those who experience improvement?

If indeed the AR receptor overexpression hypothesis is to be confirmed as the basis behind PFS, if 10% or 20% of patients benefit from additional androgens despite having PFS, is the hypothesis still valid?

Furthermore, doctors likely use other substances to improve symptoms. What is the efficacy of them?

If only 20% of patients realise a benefit from using a substance it is fair to consider it a success, from both the perspective of giving people an avenue for treatment as well as shining a light on the underlying mechanism of the disorder.

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