Anything that has the potential to provide answers and promote awareness of the syndrome is great news.
Hopefully someone with severe, persistent brain fog signs up to participate.
Great work by those involved.
This is just a first step but without any doubt we’ll know more about PFS in the up coming year than we’ve learned over 10 years of theorizing. We are just at the beginning and to truly make progress we are going to need to keep the momentum going toward an organized multi-institutional effort. Hopefully guys will start donating what they reasonably can toward that end. Mind you this was study accomplished by a few individuals, think what we could do if we pooled our resources and stopped chasing red herrings.
I might add I have not seen any announcement by anyone that the foundation has abandoned research into neurotransmitters or the effects of PFS on the CNS. No one has discounted the findings in the Italian study. I’m sure that info hasn’t escaped the guys at Harvard so there really is no reason to stress over it.
Agreed.
I’d like to see as many sufferers as possible with complete genital anaesthesia and severe brain fog/anhedonia sign up for this.
Also, all variants in symptoms should be formally logged somehow.
A big thanks to those individuals for their contributions. Without them, we’d still be at a standstill here in the U.S. I’m sure there will be announcements of more American research institutions joining the PFS research team within the next few months, if not weeks.
I, for one, have every symptom aside from gyno. I would absolutely love to participate, but at this time, I can’t afford to travel to Boston. I could in a few months. So, depending on when it’s taken place, count me in.
I am starting to think this is a a much much much larger epidemic than they thought. I saw a guy this week who has been taking propecia for 14 years, he said he has no real side effects but he did mention he has terrible plaque buildup in his mouth and his gums were receding rapidly…that was one of my first signs as well. Another guy had mentioned that he was ok while on propecia, but he did loose all morning and nightime erections until he ceased taking it in which they returned slowly. Again, just loss of erections at night and AM.
I think the most symptomatic of this syndrome like myself, may be the best to provide the clues. Lets all pray.
A few of us have been consulting Dr Bhasin for a few years now and he was always very interested in our cases we made and was open to any of the theories and brainstorming we had. You could tell was genuinely interested in studying PFS further and mentioned that he was in beginning phases of research. We bugged his ass weekly after that. Have not spoken to him in 6 months or so… Glad the he kept pursuing this and even more glad the foundation is helping fund his research!
Correct me if I’m wrong but theoretically once these findings are complete therapeutic approaches can be looked into. Just submitted my request to be be a patent, I am not as severally effected so don’t know if I will qualify or not but definitely worth a shot. This is awesome news thanks to all involved
good news!
how long this clinical study will last?
Terrific news, and thanks to Awor and everyone involved in the Foundation. I have so much admiration to everyone who has worked so hard to get this far, and I think the days when doctors dismissed people with PFS as crazy - or just prescribed testosterone - are coming to an end.
I am going to start making monthly donations to the Foundation, and hope many others do too. I know very little about scientfic research of this nature, so it would be great to have an idea of the timescale for this sort of thing if that’s possible.
I assume that categorically proving PFS exists will also help with lawsuits and funding?
Thanks all
Davey
I am signed up for the research, they contacted me yesterday and I will be going to Boston on Friday for the initial phase of the research. This thing is moving quickly - and it is really all because of the Foundation. I am making monthly contributions - and will increase those once I start working again in August. My best friend also makes monthly contributions. Keep the donations coming so we can get more research funded - and get a cure sooner rather than later.
I would think that’s right, Davey: if major clinical studies like these show causation at the molecular level between finasteride and PFS, Merck will have a difficult time claiming (a) there’s no scientific evidence that its product causes permanent damage – to say nothing of the often-devastating psychological and social impact – and that (b) the product is safe for its intended use.
What’s more, here’s the catch-22: if Merck were to undertake its own finasteride studies, what happens when those studies demonstrate that the drug does permanent damage? Also, if Merck continues to insist that finasteride is safe, then why WOULD the company conduct any clinical studies? In other words, simply undertaking a study would be an admission of guilt.
The proverbial walls are closing in.
I know it feels like we are about a decade away from any real news, but Bhasin did say he was pretty positive that his research team would be able to find the mechanism of PFS within 1-2 years. The whole “bureaucratic” side of publishing might take longer, but this is a good dude to have on our side!
How does one sign up to participate?
Signed up yesterday, hope to hear from them soon
Looks like BWH put and a classified ad in Metro, which is an international chain of commuter newspapers. I know that Metro is big in Boston and New York and Philly.
I’ve also seen a lot of patient-recruitment ads in Metro over the years for a number of different types of research being conducted at major medical institutions.
Moonman - since you’ve talked to Bhasin and he knows about PFS you probably have a good feel for what he thinks causes it. Is Bhasin in the androgen receptor camp or does he believe its caused by leaky gut/parasitic stomach organisms and skewed copper/zinc ratios?
Who is being recruited for this? How?