Possible Upcoming Conference on Fin Side Effects

General Discussion Media & Awareness
#1

I’ve been consulting with Dr. [CENSORED BY ADMIN FOR PRIVACY], a urologist and microsurgeon at [CENSORED BY ADMIN FOR PRIVACY] and also the [CENSORED BY ADMIN FOR PRIVACY] of the [CENSORED BY ADMIN FOR PRIVACY].

He believes in finasteride side effects and has had as patients 35 guys with PFS symptoms, some of which I know are on this board. He informed me at an appointment with him earlier today that at an upcoming meeting in [CENSORED FOR PRIVACY] there is going to be a conference of 14 doctors to see if a consensus can be achieved that fin does indeed cause long-term side effects like the ones he’s seen and experienced by guys on this board. If a consensus can be achieved, he tells me the next step will be to convene a larger conference to start looking at the exact mechanisms that are causing are problems.

The conference is only the first step in the society at large pursuing the problem, so I wouldn’t expect any major developments right away. Obviously, though, any further attention given to our problem is ultimately a plus.

The “Preliminary Schedule” unfortunately doesn’t list the meeting regarding fin. I assume that’s because a) the schedule is only preliminary and the meeting simply hasn’t been added, or b) it’s a closed-door meeting that’s not open to all doctors at the conference and therefore is not listed. Either way, I realize my reporting isn’t ideal, as it is far from the multi-sourced reporting many of us on the board try to provide, but you’ll just have to try to trust me on this one.

As an aside, Dr. [CENSORED BY ADMIN FOR PRIVACY] opinion is that fin has somehow affected something in our brains. Also, looking over the schedule in the link above, I see [CENSORED BY ADMIN FOR PRIVACY] is attending the meeting. Whether or not he’s attending the fin conference, I don’t know, but it sort of seems likely he would.

#2

Good stuff clampdown… nice one

#3

sounds good clampdown. Thanks for informing us. Just keep us updated.

#4

clampdown, do you think it’s a good idea to contact Dr. [CENSORED BY ADMIN FOR PRIVACY] e.g. via emai. I am from Germany and I have already been to Dr. Jacobs. Maybe it is good to contact him so that he sees there are people from all over the world suffering from that poison drug.

#5

Thanks for this bit of good news, clamp. Keep us posted please if you hear any further details. Hopefully they actually do get together. Some of the endos were supposed to get together informally at the endo conference in Boston last summer too. Not sure if that ever materialized or not.

Should we set up some sort of protocol to visit these conferences with a mod or someone who could explain trends, current working theories, etc.? Or at least offer to skype conference in?

Clamp, may I ask what if any treatments Dr. [CENSORED BY ADMIN FOR PRIVACY] has suggested?

#6

Sounds good. Is the doc himself responsible for setting this up?

#7

Mew do you have any plans to attend this conference, or have any input?

#8

This is the first I’ve heard of it. I don’t know anything more than what has been posted at this stage.

#9

As everyone can see, some of the information in my post and the posts of others have been censored. I communicated with Mew about the reason for the censoring, and all I’ll say is I completely agree with his decision. To anyone who may have seen the name of the doctor or any other identifying information before it was removed, please keep the information to yourself; this being a potential opportunity for future research efforts, it’s in all of our best interests for the time being not to reveal any information that could identify the parties involved. We all know there are some unnamed groups that would prefer not to see such research get off the ground.

I’ll post any updates as I receive them, though in the future I won’t reveal any identifying information. Hope everyone understands.

#10

It’s clear that momentum’s on our side. There’s so many in the medical field that are starting to back this cause. It’s a slow go forward, but little updates like this really add glimmers of hope. Thank you.

#11

I absolutely agree to censor the name.

#12

Is this the one about the (CENSORED FOR PRIVACY) thing about our dicks and balls (CENSORED FOR PRIVACY) something gone wrong in our brains led by (CENSORED FOR PRIVACY) with (CENSORED FOR PRIVACY) at (CENSORED FOR PRIVACY). Anyone?

#13

Have to agree with the censorship. We all know that a certain group will be trying hard to intercept our progress.

#14

Hahaha funny message! lol

#15

All right, sorry for the long delay in updating. I’ve had a lot going on in the past months and didn’t have a chance to speak with the doctor referenced in my original post until just recently. Plus, for the sake of my mental health, I had decided to take a break from the boards for a while. Nevertheless, here’s what I discussed with him:

The meeting on fin side effects did indeed occur as planned. What the twelve doctors in attendance gathered to discuss – and I wasn’t entirely clear on this point when I first posted – was not whether they themselves believe that fin has somehow caused long-term side effects like the ones we are experiencing, but, instead, whether they could come to a consensus that the literature on fin side effects proves a causal relationship between the drug and our problems. The doctor in question passed along to me that, unfortunately for us, he and the other doctor in attendance did not come to a consensus on this matter.

Once again, the doctors were not there to come to a consensus on their personal opinions on the matter. In the case of my doctor, he seems to me to be pretty convinced that fin has caused long-term side effects. (He told me during our phone call that he’s begun to see guys who are having sexual issues after having taken fin almost every week now.) The reason for the doctors not coming to a consensus, according to my doctor, is that the literature that’s been published is “so weak” that it’s not enough to prove a causal relationship.

With all of this know, he informed me his next step will be to convene a colloquium at the next conference of his society to discuss research efforts. As always, though, the problem with research efforts, as he mentioned and everyone here knows, is money. Drug companies aren’t going to fund such research, of course, so it remains an open question where the funding for these studies will come from. Not that something like the following would help us anymore, but if it were up to him, he said he would set up a National Registry for fin that each person prescribed the drug would be entered in to. A registry such as this would track side effects and likely more clearly prove a pattern of of health issues. However, the issue, again, is money, as he estimates something like this would cost $500,000 to set up.

So, anyway, not great news, obviously, with a consensus not being reached. If nothing else, though, the doctor in question is a nationally and maybe even internationally known urologist, so considering he wants to organize research efforts to look into our problems, he continues to be a good person to have on our side. Also, I know he’s aware of the research efforts that occurred/are still occurring in Italy, and I’m sure he’ll read the studies when they come out. When the studies are published, I’ll follow up with him again to hear his thoughts and will pass along any updates.

#16

Thanks for the update. A national registry for fin would be a great idea, as it would for other drugs until they can unearth some epigenetic testing which can pick up on sides beforehand. Of course big pharma would be wholly opposed to this from a potential lawsuit angle.

Kind of worrying for our own lawsuits that they think the existing studies are so weak. Hopefully firmer evidence will appear from other studies in the coming months.