Why not issue a Recovery Survey email blast?

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.

100% complete nonsense. It’s interesting that Shippen, Goldstein or Jacobs cannot come up with a single verified recovery yet suddenly people on the forum pop up with knowledge of several, unconfirmed forum members no less. Time and time again when asked for labs to further investigate “recoveries” for all our benefit those people leave due to other member’s “cynicism”. Thankfully treatments are based on science, not internet anchedotes. The “recoveries” section was full of those who declared 100% recoverd only to come back a week later and say their ED was only 80% better or w/e. That is exactly why the “recoveries” section was shut down, and wisely so. As we search for answers to what happened to us it’s mind blowing that we have people here who are so mislead. Only weeks after a milestone research paper is published verifying what we all know, that we have a permanent condition, other supposed sufferers come to post that it isn’t true. Makes you wonder what their motives might be…

Along those lines… I’d ask you to name this person who is recovered so we may learn valuable information from his story.

It’s not worth naming the recovered member in question since you already posted a dismissive comment in the recovery post they originally submitted. So what do i do? Name them again for you to dismiss them again? We just end up going round in circles.

In respect to the milestone research paper I have read the terms ‘possibility of permanent effects’ and ‘persistent side effects’ but not the part where it categorically states the effects are permanent. Please don’t read this as a challenge - I just haven’t read the entire report and would like to know if the paper does indeed state this as a fact.

While I agree the prospect of recovery does appear bleak you must concede that Shippen, Goldstein and Jacob have only had access to some but not all sufferers. Yes they are the closest we have to an authority on this subject but not all PFS sufferers are based in the US so if for example someone from the UK should recover how are they to know about it? However I would certainly agree that the lack of recoveries is alarming.

As for motives, what are yours? Why be such an active member of this forum if you truly believe you have a permanent condition? Please don’t get me wrong I am by nature a cynical person (well others say I’m cynical, I say i’m a realist) and with the current evidence available to us it is extremely difficult to remain positive but I believe that deep down, like myself, you must still hold hope otherwise why bother participating in this forum?

On another note, regarding the recoveries section what is the official word from the forum administrators? Are we to dismiss all the recoveries featured or is it for the individual to assess their reliability? This is a genuine question. I assume the administrators must vet the recovery claims as much as possible.

Of course you won’t name the person as they have undoubtly put forth some ridiculous idea as they have recovered via aroma therapy or other such idiocy. Because their story falls completely apart with the least bit of scientific or medical scurtiny. Believeing anything you read without a moments consideration of where it is coming from or how much sense it makes scientifically is more the realm of a 9/11 conspiracy theorist than someone who is seriously engaged in trying to find answers for PFS. In doing so you make the entire community of sufferers look like fools by association.

The entire medical community believed that all side effects went away after discontinued use of the drug because that was the company line. We all heard that from multiple doctors before we landed here. Actual research by someone of the caliber of Irwig showing that side effects absolutely do continue after cessation legitimizes PFS. Yes, that is a huge and necessary “milestone” for this community. That does not mean myself or anyone else believes there is no hope for us. We needed this research to expand into a further microbiological investigations of PFS. That fact seems to escape you and far too many others on this board. As BP and others have stated, we all know this is going to take some sort of intervention to fix.

The administrators of this board give miles and miles of leeway for all sorts of nonsense that is put forth. If you need an example just go check out the the 80 odd page prostatitis thread which led to many members getting worse and wasting tens of thousands of dollars. Of course they didn’t have the time to “vet” the recoveries section. How could you think that’s even possible? But, when numerous stories were flat out completely false, had people who never had PFS to begin with, stories which fell apart under any scrutiny whatsover, people who “recovered” to come back in a month saying they were back to full sides, etc. Obviously this was very confusing for us as sufferers and for those who are attempting to find answers for us. It’s truely unbelieveable we have people here who won’t, for whatever motive, comprehend this.