I have raised this proposal in the past, but I will do it once again.
There are numerous doctors such as Dr. Goldstein who have seen possibly hundreds of PFS patients over the years.
They have prescribed treatments and examined the effectiveness of those treatments on patients. This knowledge, I would think, is extremely valuable to both the community, those considering taking action to treat their symptoms as well as current and future research endeavours.
I am truly perplexed as to why The Foundation has not commissioned these experienced medical professionals to provide data on their treatment methodologies, adverse effects of treatment, revision of treatment in light of adverse effects, and final treatment regimens for patients.
I understand that Goldstein, as an example, holds views which many on the cutting edge of understanding of PFS consider to be outdated and not substantiated by the science. For example, I’m aware that Goldstein is convinced that the mechanism behind PFS constitutes 5-ar enzymes remaining inhibited or are in some way damaged or altered. Furthermore, he openly acknowledges that a large minority PFS patients are unable to derive any benefit from his treatments.
I don’t believe that these facts in any way lessens his, as well as other doctor’s utility in helping us understand how patients react to treatments while being observed closely.
Perhaps @awor and @axolotl can provide illumination as to why such data has not been sought from these medical professionals. I understand that they would want to maintain some level of secrecy to ensure that other physicians don’t mimic them, however a monetary incentive as well as a positive image could well change that.