With Reddit, this community is slipping back into (homebrew) insanity

General Discussion
#1

Reddit is a disaster for the PFS community, even though this disaster is unavoidable, since specialised sites like this one are slowly dying out.

Why is reddit a disaster for the PFS community (IMO)?

  1. No member stories necessary, i.e. anyone can jump in and talk about a bunch of nonsense, without clearly describing his symptoms, so other users cant judge the veracity of the users claims and likelyhood that he actually has / had (a serious case of) PFS (by looking at his member story). Best practise would of course be for everyone to write a member story in the format that is demanded on this site (i.e. with the checklist and questionair filled out). This is probably too cumbersome to moderate due to high traffic.

  2. No member specific user profile for PFS, since its reddit. This would make it hard to even find a member story even if it were mandatory to write one.

  3. If you dont switch the posts displayed from “best” to “new”, the algo decides what you see. This means its unlikely people will keep replying to one thread. It all gets lost in the noise and nonsense of the algo. Therefore also no way for the clever minority to bump an important thread (by posting in it so it reappears at the top).

  4. Sig. increase in claims that recovery is possible from people who recovered within a few months after cessation, hides the actual likelhood of recovery for a true PFS patient and incentivises the homebrew goose chase. This is also possible due to lack of member stories and proper moderation on who can post when. Anyone on reddit can jump in and write nonsense, since many already have reddit accounts (there is no hurdle). If you sign up for a site like propeciahelp, you know its is likely a serious case.

  5. Serious posters with knowledge like awor and co have dissapeared. No guidance anywhere for newcomers, especially on reddit, where you cant even get a full picture of the homebrew history like with the decades of posts on this website.

  6. Also reddit feels more public less private than this site, so many people are probably downplaying their symptoms or staying quite, especially long term sufferers (seems to be mainly new sufferers who are posting).

Again, I think reddit has discombobulated this community. I also think there is no real fix to this development.

Maybe one plus is that if there is a donation request for a new study, you have more reach by posting on reddit. So its not all bad.

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#3

I agree…This site is much more structured and easy to read and navigate the threads…Info doesn’t get buried down the line with every johnny come lately posting some of the craziest stuff I’ve read over there…Its pretty outta control at times and just a cluster to sift through…

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#4

The biggest issue is more irrelevant posts from people still on the drug who are (rightly) worried about sides or those just going through immediate withdrawal

I’m sure the guidance on there says to only post after the 6 month mark so not sure why that’s not being adhered to anymore

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#5

I hate Reddit, the place is a disaster for all chronic illness communities. I tend to just comb through now and then to see if I can piece things together from the scraps of peoples symptoms and find commonalities in presentations of various things but that’s it these days. A lot of the people on that sub just got some sexual dysfunction which is often just a fraction of what people get here and they may not even have meant “dysfunction” as much as “I just felt a drop in libido and it was unusual for me”. Then they just stop, eat a little better and they pretend they’re climbed mount everest. I don’t even like to come here anymore since this forum gives me body memory flash backs, I’d rather die then experience anything like this again but I rest knowing that really the only things that can cause it again are the usual offenders.

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#7

I ain’t switching…I’m like Leo on wolfs of Wallstreet…I ain’t Leaving lol!! Reddit sucks…This site is much more patient focused and individually focused like a small family over the years etc…And its much easier to keep up with members like a niche community.

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