I noticed, there are/were many active members who SUDDENLY stopped posting

General Discussion
#1

I was browsing this forum and reading many many threads from recently but also years back.

Specifically, I would go into members profile and check their posting history if I found their story similar to mine or intresting.

However, I noticed something, I noticed a pattern.

Members would join the site and would be VERY active for appx 1-2 yrs (average) but then SUDDENLY out of no where they would disappear and never come back. (based on seeing their last posting date)

Of course, there are some who go for some weeks and come back with an update but I would say the clear MAJORITY of users suddenly stopped posting.

This would only lead us to a clear conclusion. They recovered AND/OR PFS no longer became such a concern warranted enough to post on this site.

The thing is, many members are passionate and active with their postings but at a certain point… we must understand that so many people truly recover but we will never know about them because they leave this site. Once you escape PFS, its like you were in prison & the shackles and chains break from your neck and you just want to run in the wild and be FREE.

Therefore, This site stays behind in that prison called “PFS” and this site leaves from your mind and memory along with all the horrible memories of PFS. THIS is why people leave and dont come back

I welcome other theories

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#2

I have been active in this forum since the beginning of PFS, and I am full of confidence to try treatments such as HCG, Clomid, fasting, etc. But as time went on, I found it useless to vent on forums. I just have to live my own life, although things have gotten worse over the past year. Many others have gotten used to PFS and learned to live with it.

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#3

like @swq5803000 said.

in the other hand.Most of them will improve over time, or accept such a reality.

People just feel very tired, and endless complaining is also a matter of exhausting their energy.

Snake oil such as herbal medicine can’t save us. People with alittle mind can think of it. Therefore, in terms of “value”, it’s not necessary to review this forum often.

Fortunately, we really began to reverse this trend, and scientific research began
I have printed out the story of axo and put it at my desk. Now I log in to this forum just to chat with my old friends and hope to see his posts @Sugarhouse … Compared with before, I will devote more energy to fighting my anxiety (such as playing games )

And I believe many people are tired of the discussion of “recovery”, just like waiting for the moon to fall to the ground.

Only by constantly working and donating money can we cure us.

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#4

A moderator posted the following a few months back:

  • “…We’ve made some updates to the rules around how members can report improvements due to substances/lifestyle changes. Moving forward, please use the self-reporting form…” *

I believe the number of posts dropped by up to 50% in the time since. Some days there are fewer than a dozen posts, board wide. Opinions and theories were throttled, and posters pulled back. IMHO. Jim

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#5

Looks like the rule has been relaxed some lately, giving way to discussion. Guessing the form was a little clunky and not accomplishing what it was supposed to.

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#6

Im very confused.

Why did they do this?
Why are they discouraging people to post their recovery stories and methods?
Why do they want less activity on here?

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#7

@iHATEMerck. There was extensive discussion here, if you missed it:

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#8

There are 2 simple things expected of ALL members that are repeatedly ignored and create almost 90% of the work for the handful of active moderators and nearly all of the complaints directed toward the staff.

  1. A Member Story, including a completed member story template, which contains a brief questionnaire about usage history and a symptoms checklist.

  2. To report any positive/negative results from treatment attempts in their personal member story topic using a Self-Reporting Template

It is expected that anyone claiming improvements or recovery do these 2 things to provide some context regarding their duration of use and dosage (which you appear to be greatly concerned about), which drug they took, when their symptoms developed, what symptoms they had, etc…

How could maintaining this standard be viewed negatively?

As was discussed in the topic Mr Wildman linked, the purpose of this site is to promote awareness and legitimate research, not to promote unverifiable self-experimentation or theories.

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#9

I don’t believe the reason people stop posting is because they recovered, I believe the majority are just tired and they find no more answers in the forum.

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#10

No one has said it but there will also undoubtedly be some suicides. A few very severe cases stopped posting and I very much doubt it was because they got better even though they will have grown tired of the constant cycle.of e.d. and snake oil talk. I’m in touch with a few who left for this exact reason However the level of severity some get too cannot be comprehended by many and ending it becomes the only way to stop the suffering as their symptoms only worsen. There WILL be some I have no doubt. I’ve said it before but a database of contact details would stop speculation.

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#11

This.

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#13

I think the moderators should periodically send out email notifications to all members and ask them to kindly share their stories if they’ve recovered.

I urge them to do so.

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#14

In my first year of PFS I visited here often, searching for answers. No luck.

In my second year I had a hard crash, and my visits were few and far between. I felt there was nothing useful to be found, just a bunch of self-experimentation with contrary results.

Some months back I was not improving whatsoever; I came back praying for positive resolutions.

I am hopeful for study results that can save us, and I will only find that here. Mass media sure won’t keep me informed.
Also, being amongst a group of like-minded individuals may help maintain my sanity during this Hellish trial.

Next time I stop contributing here I’ll be either recovered or dead. Jim

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#15

I see normal that people who do not recover stop writing. They lose hope and find this forum no longer useful. What has no explanation is the people who are cured, post it on the forum, and disappear, and I’m afraid that most of the cases are like that, or not? If one day I was cured, I would publish it here, and I would enter the forum from time to time to continue encouraging people to try my treatment, answer questions, etc. However, no one does that. There is something strange in these recovery stories. What do you think?

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#17

Thank you, everyone should be like you. Other people tell of their recovery and then suddenly disappear. I think is disrespecfull. They give people hope and then create uncertainty because we don’t know more about them. It is important for us to know whether or not they have maintained their recovery over time. If one day I am cured, I will write my experience here, and from time to time I will tell how it has gone months or years later, if I am the same, if I have improved, if I have worsened, etc.

By the way, what is your post where you comment on your recovery process? what treatment did you do?

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#23
#24
#25

It’s disappointing that after clearly explaining the reasons for the change in site policies, on dozens of occasions, this same discussion is being started again.

The reasons for the change in site policies have been made clear, ad nauseum, here: Changes to propeciahelp towards a more effective patient advocacy: Please read this important post about changes to our terms of service

As @mstone has pointed out - members are more than welcome to continue discussing treatment attempts, so long as they are done using the self reporting template in their user story. This has never been prohibited.

We were transparent in the announcement about these changes that they would not be suitable for some members of this community. We are well aware this will lead to some patients going to private groups or elsewhere. After two decades of the same behaviours playing out - leading to extremely slow and minimal progress in scientific understanding - we just cannot continue to allow an unmoderated sprawl of posts regarding treatments and patient theories to continue, while we are advocating for real progress in the real world.

Regarding the comments that this may lead to the death of the community, I must strongly disagree. Over the past nine months we’ve had hundreds of patients, family members and clinicians sign up for the PFSN mailing list, almost 600 users subscribe to our YouTube channel, and attracted more than 200 individual donations amounting to over €135k which has funded at least one important study. That doesn’t look like a dead community to me, it just looks like one which is finally focused on the important things rather than an obsession with short-term fixes.

I’ve closed this thread because these circular discussions ultimately lead nowhere. If you have suggestions about how to improve the forum, there are appropriate channels in which to raise them. We’ve sent out countless emails, posted surveys, etc asking for volunteers and feedback, yet some patients seem intent on doing little while publicly criticising the efforts of our team. Doing so publicly does nothing but attempt to undermine the strategic direction of our organisation.

Thank you,
Mitch

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