Why not issue a Recovery Survey email blast?

General Discussion Media & Awareness
#1

Mew, can we put some kind of system in place where as soon as someone posts a recovery:

  • they’re emailed an “exit-survey” with 2 columns, one with the original PFS checkboxes of symptoms, and the “after”
  • they’re emailed every 6 months with a quick survey of how they’re doing, some very basic questions like
    • what % recovered do they still feel
    • what medicines or supplements or protocols are they still on
    • any notable improvements or setbacks

In fact, could the forum put out a mass-email blast to all those claiming recovery, even those not formally recognized in the recovery section?

Even better: Maybe e-mail the entire forum and put a bold subject line — Have you recovered from PFS? How? Followed but a very brief request for an update on their post PFS state for the benefit of the frustrated community at large.

Wouldn’t it be interesting to compile data to find out where registered members who disappeared are in their lives? Have they just accepted PFS and move on? Did side effects resolve after 6 or 9 months? Did some claimed recovery cases relapse? Are some PFSers still recovered?

I think this would be useful data to collect and would be happy to collaborate on carefully crafting the message to increase likelihood of participation.

#2

It is not a bad idea,

but I believe there is only an 0% recovery or an 100% recovery - Nothing in between.

I really do believe we suffer all the same quality, maybe some have only mental problems and other only sexually. But if you have both, we have all the same.

#3

this is a good idea!

#4

I don’t understand why some here hold onto the notion that there are these countless PFS “recoveries” out there in the complete absence of any shred of real evidence they exist. This is probably the biggest ongoing fallacy on this board. I’m not trying to sound harsh but all evidence indicates we have a permanent condition. And, it’s very important right now for a multitude of extremely obvious reasons that we do everything we can to make that crystal clear. Even if someone bothered to respond a couple anechdotes of people alledgedly and without any way to verify recovering via aroma therapy or other such complete nonsense is of absolutely zero use.

#5

I am so sorry but I have to agree with boston332. But I do not think it is untreadable - we will tread it. ONE FINE DAY.

#6

So let’s just bury our heads in the sand? Why do you fear the survey? Not very scientific to just guess what the result would be, is it? I know 3 guys offline that are recovered by different means. They are 1000 times more real to me than you.

The side effects of PFS are most accurately described as persistent, meaning indefinite, until someone possibly recovers (or not). In practice, it means the same thing as permanent, except that you allow for the possibility of reversal.

This fucking attitude of absolute certainty you’re displaying really gets under my skin.

Don’t you want to know what happened to all those members who don’t post or visit anymore? Perhaps things resolved, perhaps they offed themselves and we’ll never hear from them, perhaps they just make do with their condition. Let them speak for themselves…

Collect the data and then judge it.

#7

You “know” three guys off line that have recovered? Let’s see their protocols, their blood tests, etc. Wisely the “recovery” thread was shut down because time and time over there would be zero proof, someone would qualifiy their “recovery” in some way in subsequent posts, etc. People may recover “to a point”. It’s critical we portray a 100% accurate picture of what is going on with us and part of that is persistent nature of our condition. I am not going to suspend common sense just to make myself feel better.

#8

Sorry, to say that, if we think like that we all can go and start to kill ourself.
I´m realy sick of reading all the negativ shit here. I´m very sure, when I pop in and write a post. Wow I had a wonderfull day, the next guy would write, no this cant be, we are fucked up for ever and ever and ever and ever… you are from Merck etc bla bla.
Sending a mail, to the people, asking them how they are is not a bad idea, may be some answer some not. What is wrong on that? If you think its useless, ok… IF you think ist permanent ok. But why the hell some people uses every post to write negativ things? This is pulling people down more and more. You become your worst enemys!!! I think even, when a guy would stand infront of you and tell you that he recoverd. You would even doupt, that he had PFS. I saw and spoke to a guy, who was realy realy bad fucked up by acutane and he recoverd 100%. People can recover and when people heal cancer or whatever by tic tacs, it doesnt matter why! Have you ever thought before, that a drug can do this to you? If you think, it´s like that we can close the forum, stop the studies do nothing anymore. Or do we have to prove that we are fucked up permanently, would you feel better and would you feel happy to got that evidence? I would be very very carefull writing such things! Or do you want to drive young guys into suecide?

I just can say! GUYS stay positv, dont lose hope! Because this keeps us fighting and alive!
Recovery is posible!!!

#9

Absurdity.

Issue the survey, and let people decide for themselves what’s credible and what’s not.

Otherwise, you’re just another censoring know-it-all pseudo-scientist with no “commen” sense.

You might get a response rate of 40%. Out of those, maybe 20% report that the side effects wore off after an average of 6 months. Out of the remaining 20%, perhaps 3% have managed a decent quality of life either by some ongoing protocol or some outright therapy that reversed things. The rest might report that they just don’t bother with research or treatment anymore. Point is: let them tell their story, they’re all just internet screen names like you. Put the data out there. It’s because this condition is persistent that we need all the data we can collect. Unless you have some ulterior motive in suppressing this data?

#10

How can you proof that you have PFS? You sound like to 1000 of doctors outside who say, PFS is not real or only a mental Problem. Can you proof that your dick was even bigger before fin? I want pictures and a proof! Can you Proof that you have PFS? May be you are just a merck spy, who wants do drive all PFS people into suicide, so that they dont have to pay. Dont you see what you are doing??? What does any blood test shows? Nothing! Proof Proof proof…Proof that you have PFS! Trust me! I hope not that this day will ever come! But, If I ever will kill myself of this shit, people like you drive me into that!!! Keep this always in you mind! When, im one day gone and never come back to this forum, I hope that i come back and Post that im recoverd, But when I never come back. Keep in mind people like your were a BIG part of it, that drives people into suicide! Keep that deep in your mind!

#11

Someone who continually posts PFS is infection related and was duped by the infamous doctor from Kos calling me absurd? You jest, no?

#12

Let’s pick apart your genius and integrity, Boston332:

  1. My prostate/testicle pain is resolved. But you already knew that.
  2. You say it’s critical to portray a “100% accurate picture of what is going on with us” and the way you propose achieving that is by not surveying everyone?
  3. Prove you have PFS. Oh wait, you’re just another anonymous screen name and can’t. But you demand a higher standard for other anonymous posters. Ever heard of irony or hypocrisy?
#13

this is what i mean!! We becomming our worst enemys! It´s realy a shame
@Bosten332 If we was dumped by a doctor… we all have been dumped. keep that in mind!
He had hope, and tryed something. Telling him he was an idiot doing that is the worst you can do. We all have been idiots taking this drug! Why always those negativ things here? WE need to work together! AS A TEAM and supprot awors work! The research can give us a lot of answers, While they are running, we can do some things, sharring, what helps, supporting each other and giving us hope. This are the things we can do here and not pulling people down.
to Doubt everthing is not the best way. We need to stay positiv and not fight eachother.

#14

If you want to believe I do not have PFS and I come here for fun that would be one of less incredulous ideas you’ve adopted. I’m not trying to be depressing and I think we have made huge strides over the past year.

Still… I’d like to hear from the three PFS recoveries you know off line since I have not met one yet. Please ask them to join the forum and fill out the new member template. Thank you.

#15

Traditionally a lot of forum users have been scared and in denial of the reality that there is no available known means of treating PFS.
I think that has changed a lot in the last couple of years given that half the forum now seems to have attempted the usual treatments with very little success.
Oddly enough I think the guys who realise it is permanent as things stand are the guys who are most screwed symptom wise and have lost the most, whereas a lot of the guys who latch onto various theories seem to have mainly ED/libido issues and are maybe in denial a bit, haven’t had it really screw up their personal lives beyond sex or told others.

The truth hurts, unfortunately. I agree with Brainbug somewhat that it may be distressing for newcomers to the forum to learn the facts as they stand but you can’t sugar coat the reality of the situation and build false expectations. I remember reading all the old recovery stories and the sinking feeling when realising they were mostly bogus or useless.

I think it would be good to have a more active community of men who report back every so often, or are requested to do so, but I don’t think there will be many (if any) bona fide recoveries unless their PFS wasn’t that bad to begin with.

1 Like
#16

Personally, I’d be very intersted in this and think it’s a great idea. While I also think this is a persistent (maybe permanent) phenomenon, I’d still like to know who many people have had partial “recoveries”, as in, have used various ways to create what they consider a partial recovery. I’d much prefer to know that, so that I too can have hope that there can be some sort of way to manage/work/live around the situation I’m in. Even if it’s not some full blown authentic recovery.

#17

I realy cant handle this anymore. Reading all those negativ shit here. This pulls me even more down and down. Im very depressed, I always try to stay positiv and fight, but even here were we all are sitting in the same boat, some are pulling people down even more.
I cant handel this anymore. All those fighting here all those negativ things. Im done. I broke up with my GF before a few min the love of my life. Because I dont know what the future will bring me. I though this is the place of hellping each other and giving us hope. But today all things come together, my pet died. the thing with my GF, and than my mother was also very angry with me, because im doing nothing anymore and let myself hang. Now im all alone and even here people are just fighting about theories about ideas and and and. Evertime you have to expalain things 1000 times people just doubt and doubt.I wrote with people, who realy are asking me have you spoken to the scientist face to face, event that people doubt. Guys, you realy dont know who many phonecalls i had with so many people. Awor is doing such a great job an even him people here are attaking. Fin destroyed me but this Forum and some people here draged me even more down. I spended hours of hours to help us… This is the worst and deepest day in my whole fucking life.
It is so unbelivable. I think I will stay away of this site for some time…or for ever I dont know.

#18

Hey Brainbug,

I´m very sorry for what has happened to you today. This must be a very hard day for you.
I hope you will stay a part of this site. Your posts are always constructive and with some posts and messages you gave me hope. So please keep searching for answers and please keep posting…

#19

Ditto, Brainbug I hope you stay too. You are a real asset to this board.

#20

I am sorry this is happening to you, sorry you had to push the ones away who love you. We all appreciate the work you are doing. Of course people are going to think negative thoughts and it of course on this forum a lot of us have bad attitudes, think about it this way if your telling your brain “i’m fucked, i’m seriously not going to get better, my girlfriend is going to hate me, i’m going crazy rah rah rah” your brain is not going to go “nah man your going to be sweet don’t be silly. It’s amazing” what your thoughts will do, but as I said it’s hard during PFS sometimes you can’t help but feel like a piece of shit(currently feeling this as i’m at work today) It helps to talk about the problem, don’t make it the number 1 topic though which I have no tried to control with my girlfriend. It’s a hard situation i mean even telling my parents they think it’s outrageous. I’m personally going to start seeing a psychologist to help me get through this, Personally I have probably been a bit over the top on these forums but that’s just fear of not knowing. Let’s get some better attitude happening on here.

Common things that I see.

-Many guys have valid idea’s on here, Do not disregard them. No one really know’s what happened yet. So give it a chance. Because were all here to try and fix this shit.
-Negative we are fucked attitude.
-Anally retentive comments “wah wah wah wah wah i’ve seen this post before”
-Everyone thinks they know the answer, when they don’t!! There is no proof yet that any theory is correct. So please have an open mind.