September 2019:
Video of Alan Cruz’s talk is available:
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Wow. The presenter actually recognized PFS for the multiple-aspect syndrome that it is.
Thanks for posting.
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Wow big yikes. All of that and the conclusion was that they aren’t even really sure if they should change their practice? This was not encouraging at all. The research and slides used seem dated and non useful. Where is all the more recent researched from melcangi and the others? Basically all I heard was a bunch of boomers making comments like “the website is ran by medical malpractice lawyers” which doesn’t need any explanation on the impression it leaves. Crazy that in 2020 that it’s possible be to be so behind on current research and completely unaware of the consequences of the drugs they’re freely prescribing
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@trav Absolutely!
I immediately sent a note to Alan Cruz at U. Mich and cc’ed the doctor sponsoring the Grand Rounds at Yale. I brought up that exact comment accusing the PFS Foundation of being profiteers, and said, “Did you know the son of the foundation’s founder killed himself from PFS?” and I pointed out that the Foundation was created to help others facing the same condition.
Also they discuss the fact that if you mention sexual side effects to patients, patients report them at a higher rate – another discounting of the PFS phenomenon. I wrote them that I had no idea finasteride caused such symptoms when I began experiencing them.
Somehow they did not consider that reporting of sexual side effects in studies is unreliable, and instead the first instinct is to give psychological explanations.
You’re right, the research was out of date. I sent them a list of some of the key research in recent years, as well as a link to the bibliography:
http://bit.ly/finasteride-research
Doctors and medicine are conservative by nature. It may take multiple mentions of PFS, a continued stream of publications and contacts from patients for them to finally take notice. I think a large part of the battle is getting people to pay attention. The scientific picture is complex, but doctors are not even getting there because of lingering doubts about whether it’s real.
This whole thing exposes weaknesses and blind spots of medicine.
I don’t fault the speaker – he’s still in medical school and I thanked him for focusing on the topic.
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And of course the comments are disabled on the video, I’m so sick of these doctors and scientists that have a silly god complex
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That was frustrating on so many levels. But at least he created a presentation that acknowledges PFS and makes it seem real, right before they get everything else wrong.
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