Why not issue a Recovery Survey email blast?

And of course when they do boston332 will be right there to scream FAKE RECOVERY FAKE RECOVERY YOU CAN’T PROVE IT

The simple truth is that everybody reacts differently to fin, and PFS hits everyone in different ways, a few people, due to luck/genetics, seem capable of recovering. In other words, just because other people recovered to the point where they can have a normal life, doesn’t mean you will, and just because you are having a shitty time, doesn’t mean other people are.

So there, now you can acknowledge the fact that some people have recovered but things are still pretty hopeless for the rest of us in general and you in particular.

The ONLY reason to not encourage an honest survey of registered members is because you might not like the result.

If PFS is by circular definition “permanent,” then what do we gather here on this forum for? Clearly, we’re here because it’s PERSISTENT, even after quitting the drug, but we exchange information with the hope that we can find either a cure or ways to manage our symptoms.

So finding out what registered but silent or absent members are up to is a NO-BRAINER!

If the mods are concerned about a fleeting recovery, a likely crash, and dozens of PFS newbies chasing a false cure, then issue a standard response anytime someone posts a recovery. And ALSO discourage the rude interrogations which alienate members from returning to admit relapses:

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i’d be all for this as well though i’m not sure how practical it would be (how many e-mail addresses do the admin’s have?) what concerns me are the number of people who simply stopped visiting this website… and if we can investigate that further it could really help us out whatever the reason is. If we find out that they’ve recovered this could really give us hope. if we find out that many of them have committed suicide or died, this could give our movement some serious attention depending on the number. I figure if this were possible, Mew would have chimed in by now?

Regardless, please try and be supportive of each other and not hurl insults or be negative. This really should be a SUPPORT group.

In past emails to members we have requested them to come back to the site and update us on their current status, and we have gotten some response, however your suggestion is a bit more detailed.

The email service we use does not support attachments (ie, Word .doc) and I do not have the time to sift through and compile documents, stats etc. Users could be re-directed to a thread with the pertinent info they should fill out, but perhaps a better solution might be an online questionnaire that compiles statistics etc.

Unfortunately I do not have the time to set up this project at the moment due to other commitments, but it’s a good idea and will look into it further when I have a chance, possibly over coming weeks. If you have suggestions for free online questionnaire providers, post the links here. Surveymonkey is probably top dog in this area: surveymonkey.com/pricing/?ut_source=header

Cheers.

I find it interesting you would suggest that someone who is “cured” from PFS wouldn’t come back to the forum and tell everyone exactly what protocol they used. That we’d need to email them to please come back and fill us in on this miracle they neglected to mention to the rest of us. No, I don’t automatically believe something just because it’s posted on the internet. This is the reasoning usually found among 9/11 conspiracy theorists and their ilk.

I don’t understand the value of a survey of “recoveries” from a “recoveries” section that was shut down due to the fact they were all highly questionable.

Still waiting on the three people you know off line who recovered from PFS. Certainly they will have something valuable to add to this discussion.

Boston332, thanks for your ongoing negativity. It’s very productive.

The survey is actually intended as an e-mail blast to all members to see where they’re at. Believe it or not, some people move on past this forum. I’d like to know why? Is it acceptance of their condition? Modest success at managing symptoms? Natural recovery?

The 3 recoveries are members. One is IHP who you’ve probably defamed before. Whatever, he’s having sex, you and I are not. Another was banned. The last quit the forum because he found it too toxic and never bothered to return. Until I PM’d him and he received an email notification and brought me up to speed. He was on TRT before he took a 5AR inhibitor (like Awor), so his case is unique. But still could probably stand to help enrich our collective understanding. When I asked him to come back and post his story, he declined, he just took one look at the relevant thread and said “no thanks.” So all 3 recovered via 3 entirely different means. And all three feel precious little incentive to attempt to repeat their story past whatever they’ve already offered. And I can’t blame them.

The way you approached me is why people don’t come back. Why would you mock a treatment I did? Especially after a record of reporting accurate results, including failures? Why would you attempt to back me into a corner? What value does that add to the community? Say I DID relapse after a successful antibiotic treatment…what would that prove? Fortunately I have enough integrity to report something like that should it occur, but many others would feel the need to stand by their claim because you’re such a miserable asshole.

Tell me, who benefits from your unnecessary zealous aggression towards your fellow sufferers and people deciding it’s not worth their time to argue on the forum and report experiences (positive or negative)? You’re either driving people with insight away, or your inspiring people to not be forthcoming with relapses or failures.

So here’s the deal: I don’t give a shit if you believe any particular post. Let the rest of us decide for ourselves. We ALL stand to lose when loudmouths like you discourage posting. All I’m suggesting is collect and sort the results, weigh the credibility afterwards, and simply do not pay any mind to threads or treatments that don’t resonate with you. You’re just another anonymous guy to me - but I’m not gonna mock or discredit your exchanges with your doctors, and I’m not gonna go after you until you shit on me.

Mew, thanks for finding value in this. I’ll see what I can muster up and get back to you.

I think I see the value in what both Horndog and Boston are suggesting:

  1. I think it makes sense to get in contact with former PH members to do our own informal follow up since it can’t do that much harm. However, Dr. Irwig basically did this in his most recent study and showed that literally not single patient improved over that one year time span. I am inclined to think that if somebody does recover, they were never after suffering from PFS in the first place and had other causes for their health problems.

  2. Boston322 also makes a good point. It makes a lot of sense for us to be realistic about this condition and the fact is that it seems to be permanent. The public/media/FDA will take us more seriously and will take stronger action against Merck if they realize that this is not a condition that needs some time to heal. People are biased to think towards this way since humans have a natural tendency towards optimism and this type of thinking really underemphasizes what has happened to us.

I still hold on to a shred of hope that my condition will one day reverse or at least improve to a functional level, otherwise I would not even really bother with this forum. However - the odds seem to be heavily stacked against us realistically speaking.

Frustrated, a brief email or online survey link is different than Irwig’s study which issued qualifying criteria and then required filling out long forms. It may generate very little response or useful data, or maybe we get a couple of interesting anecdotes. Point is: let’s try.

It’s precisely because our data pool is so small to begin with, and because I’ve been living with this nightmare for 5 years and see the likelihood of an obvious miracle cure in my lifetime being so low, that I do not want to throw out the little data that we have. Before I quit, I want to at least make sure we tried to solicit as much info as possible.

A handful of long-term sufferers slowly, through much agony, trial and error, and expensive and painful means recovering or managing symptoms does not discredit the persistence/seeming permanence of PFS whatsoever. If we get a few cases who responded to TRT, it’s not defensible that we took a drug that royally screwed up our hormones and “all” that is needed is elaborate hormone replacement that .05% of the persistent sufferers respond to. Even if a decent number of registered members ended up healing in 3 or 6 or 9 months, that does not change anything: we already know the persistent sufferers are in the minority, but are still real humans experiencing real suffering.

For a certain as yet undetermined % of finasteride users, side effects don’t go away and the patient is left to become his own doctor/scientist. The very fact that we’d even need to issue a survey highlights this. Put your health and hopes first, and stop trying to worry about “how this might look.”

You NEVER know what you might find if you just ask…and get out of the way.

Considering the microscope we are currently under and the critical crossroads we are now entering if I were a member of the medical, research or legal community I’d be extremely confused as to why there is a mass email survey of “recovered” forum members oddly timed immediately after the publication of Dr. Irwig’s paper suggesting PFS is a permanent condition. At best it’s pollyannish idea at worst it lends credence to the notion that this is a currently treatable condition further confusing the medial and research communities. I am not saying we should all giveup and obviously I wouldn’t be here if I didn’t have hope for research and treatment but I’m also not willing to dilute myself. I’ll go one further - If I seem overly harsh with you, horndog, it’s because I feel that people who push alternative treatments that resulted in many here wasting time, money and hope are dangerous and owe a moral debt to those who foolishly followed in their footsteps.

Unfortunately we have to consider what these communities think of us. It’s astounding to me that you don’t understand this and that we have much more to gain from investigations by actual research institutions than anything we can do here ourselves.

As Mew has said and I recall these informal surveys have been done in the past with very little participation. Responses from such an informal survey could hardly be called “data”. If you want to design a survey, without questions that would lead toward one particular agenda (ie, which anti-bactieral medication was most benefical) be my guest.

Are you really having that tough a time processing that I’d like to issue the survey to ALL members? In the hopes that we hear from some of the inactive guys? “Hey dude who registered in 2007 and made 3 posts and disappeared – what are you up to these days? Kindly help us PFS guys who have shriveled dicks by giving us a quick update: did you recover or are you just moved on with life?”

99% of the treatments tried, alternative or mainstream or heavy metal have not worked. Do I get my money and time back for doing mainstream TRT for a year?

Again, and fully understanding you don’t need my ok, go ahead if you’d like as long as the survey is not full of leading questions and an admin could review it before it’s sent out, personal time permitting.

But, getting back to those who you know who have recovered I’d honestly like to hear from them. That’s really the most astounding claim I’ve seen on this board when many of us who have been here for years do not know one person completely recovered yet you know three? How do you know them? What protocol did they use? Why didn’t you ask them to come to the forum and share their stories and help this community of fellow sufferers? Seems that would be ther very first thing I would do. Certainly you can understand the importance of further investigating these recoveries you know “off line” yet still no further information?

This is getting redundant. You’re not getting it. I PM people and get to know them offline. The very thing you are opposed to doing here. Reread my prior posts and you’ll have all your answers.

Your agenda is to frame the discussion in your biased view. Mine is not. I entertain every single possibility for a treatment or cure, I don’t have my name on any research paper that I live or die by. I only want my health. Have a good day, sir, I’m done here.

In your first post it states “exit” question as soon as someone “posts a recovery”, not current sufferers. I do have hope, maybe an illogical amount of hope, that someday we’ll have a treatment. There are some amazing things going on right now in epigenetic and gene therapies. I know alot of people are working hard behind the scenes but it’s very demoralizing that the current schedule of studies has been pushed back indefinately. I’m sure some of that frustration spills into my posts but of course I only wish the best for everyone here and hope that all of us can get back to our normal lives.

Not sure what you’re referring to here, I do not recall any post saying indefinitely.

No offense but that’s one doctors opponion. Show me some scientific evidence.

I assume you’re talking about Irwig. You don’t feel Irwig’s studies were conducted scienfically or constitude “scientific evidence”?

That is a ridiculous statement, and borders on sounding like something Merck would say. Dr. Irwig’s methods were outlined in his paper.

He is far more qualified to make such statements/opinions as a professor of andrology at George Washington University, than any of us.

Methods

Subjects
Participants for this study reported sexual side
effects associated with finasteride which persisted
for at least 3 months despite cessation of the medication.
The indication for the medication was
MPHL, and all men started and completed finasteride
use before age 40. Men were excluded from
the study if they reported any of the following
before starting finasteride: baseline sexual dysfunction,
chronic medical conditions, psychiatric conditions,
a history of taking psychiatric medications
or baseline use of non-topical prescription medications
other than a short course of antibiotics.
Subjects were recruited from a previous study
(N = 54) relating to persistent sexual side effects of
finasteride [4]. Most subjects were initially
recruited from Propeciahelp.com, an Internet
forum dedicated to unresolved side effects of finasteride.
Other subjects were recruited from the
author’s clinical practice and from physician referrals.
All subjects provided written consent to this
study which was approved by the university’s institutional
review board.

Design
Telephone or spoken Skype standardized interviews
were conducted with all subjects as previously
described [4]. Subjects were asked about
demographic information, medical and psychiatric
histories, medication use, and sexual function
before and after finasteride. Follow-up e-mails
were sent to participants 9–16 months (mean 14
months) after their initial interview dates to reassess
their sexual function. Subjects were asked to
readminister the Arizona Sexual Experience Scale
(ASEX). The ASEX consists of five questions that
measure core elements of sexual function: libido,
arousal, erectile function, ability to reach orgasm,
and orgasm satisfaction [12]. Each domain was
measured bimodally, with a six-point Likert scale
ranging from hyperfunction (1) to hypofunction
(6). Sexual dysfunction was present if the total
score was 19 or if any one item was 5 or if any
three items were 4. The sensitivity and specificity
of this instrument to identify sexual dysfunction
were 82% and 90%, respectively [12]. The validation
of ASEX consisted of a control group of 16
men with a mean age of 38 [12]. Their mean scores
were 2.25 for sex drive, 2.19 for arousal, 2 for
erection, 2.69 for orgasm, and 1.81 for orgasm
satisfaction. The ASEX scale was found to have
excellent reliability coefficients for internal
consistency and test–retest forms, accuracy in
quantification of the major elements of sexual dysfunction,
and brevity and ease of administration
[13]. The scale could be administered regardless of
a subject’s sexual orientation or the availability of a
sexual partner.

Statistical Analysis
All analyses were performed using SAS Version 9.2
(SAS Institute, Cary, NC, USA) using a = 0.05 to
declare a result as statistically significant. Paired
two-tailed t-tests were used to test differences
between individual items and the total scores on
the ASEX questionnaire at three points in time:
before finasteride, after finasteride at the interview,
and after finasteride at reassessment.

For one the epigenetics study that was scheduled for Q3. I could have missed it but I didn’t see any new target date, just that it has been put off until the other studies are completed but no target date for the completion of those either. While we all understand these things happen it comes as an extreme disappointment to those of us who were looking forward to that study, particularly in light of the strong indictation that there could be a significant epigenetic role in PFS.

@Mew

I’m not trying to be disrespecful he is a highly qualified Doctor. Though “Telephone or spoken Skype standardized interviews” of course this is going to suggest permanant damage, if everyone says we haven’t recovered. There is no evidence that suggests it cannot be fixed.

I understand your point of view but for what it’s worth I’ve been in communication with a former forum member who decided to stop posting due to the cynical feedback he received about his recovery. This is a member who’s recovery is still featured in the recoveries section.