Page 1 of 2

Some possible forum ideas

Unread postPosted: Mon Apr 23, 2018 10:35 pm
by Ghost
An idea just popped into my head tonight.

First of all, people with PSSD are scared to share anything personal online because EVERYONE can see it worldwide (members and non-members alike).
Secondly, I want to encourage as much participation on this site as possible.

These ideas led me to thinking about a way to increase participation and reduce privacy concerns.

I'm thinking of implementing an area of the site only viewable to members and/or to people committed to treating their PSSD by new trials. it's a bit hard for me to watch people wait for other people to try anything - it leads to only a few people actually trying new things. Locking some of the forum content would incentivize forum membership and a section dedicated to trials could encourage more people to try things for themselves instead of waiting passively for a cure.

Also this area would be more personal because the entire world wouldn't be watching.

Thoughts on this? I want to hear what other people think of the possible idea. There is already a locked portion of the site but it's not currently used much - but I could expand it.

Re: Some possible forum ideas

Unread postPosted: Tue Apr 24, 2018 12:38 am
by been_too_long
Absolutely not. There is no reason for it because people already are anonymous on a forum. I am really confused by the thought that people wont try treatments because of privacy concerns? What does that have to do with anything. Because "nano57" says hes going to try yohimbe on the forum is that going to make me go "o gawd that's John down the street!" It just serves no purpose; to the contrary it makes it look like we are hiding something. People claim they want to spread awareness yet we have some mysterious section? What perception will that cause?

besides.. on the remote chance (ok very very remote) some professional is looking into our curse and wants to gather information; do we want to put up any barriers???

Re: Some possible forum ideas

Unread postPosted: Tue Apr 24, 2018 1:42 am
by Bear
I can see where you're coming from, but I'm in agreement with been_too_long.

We already have anonymity. Privacy concerns are irrational because nobody is being forced to publicise their identity. The sign-up process requires no personal details except an email address, and your location can be hidden with an encrypted browser.

With that being said, people have to drop this idea that we're going to be able to acquire the connections and resources needed to generate PSSD awareness, research, and viable treatment options without sharing our identity with the world at large. It's not going to happen, and this mentality will only drive us backward.

I'm thinking of implementing an area of the site only viewable to members and/or to people committed to treating their PSSD by new trials. it's a bit hard for me to watch people wait for other people to try anything - it leads to only a few people actually trying new things.

I agree with that last part, but I don't see how restricting access to this sub-forum would encourage others to experiment. It could potentially produce the opposite effect, as fewer people would have access to information about treatment options. This could lead to a decline in treatment reports.

I also feel like it's important to consider that those who were recently afflicted with PSSD might feel dejected when they can't see that there are treatment options. As PSSD is so psychologically damaging, we don't know how costly this lack of information could be to them.

Re: Some possible forum ideas

Unread postPosted: Tue Apr 24, 2018 7:35 am
by naiverat
How many active members do you think there are on this site out of the some 600 members? Maybe 50-100? I think there are a number of reasons underlying this.

PSSD progress is slow. There have only been a handful of recoveries in response to drug/supplement therapy on this board over the years. Once these options have been exhausted, there isn't much motivation to continue being active on this site. Many realize the chances of a silver bullet are extremely low, and that focusing so intently on PSSD is ultimately unnecessarily putting their life on hold. Rather, they hope their brain will return to its original homeostasis over time.

It seems we are also running out of drug treatment options until new ones are developed. Only so many substances interact with the serotonin/dopamine systems, and most of these have been experimented with. Most new threads on this site either are a rehash of these same previously tried drugs or threads that clearly have a very poor understanding of the science of suspected PSSD mechanisms.

Most people don't want to be the first to experiment. Understandably, they're scared of worsening their symptoms. Or don't know where to begin. We are moving into the realm of more experimental treatment options, of which the side-effect profiles are not very well established in the literature.

Purchasing tens to hundreds of supplements/drugs to experiment with can become prohibitively expensive. I've spent a lot of money. I don't consider it a waste though. PSSD is a damn life-ruiner. With that said, it would be good to see some substantial evidence before investing any more in a treatment.

I don't think anonymity has anything to do with lack of activity. This site is plenty anonymous, as is. Like many online places, there are probably a lot of lurkers who have read some info on the site, tried a few treatment options without luck, and don't feel they have anything to contribute.

I't's still somewhat shocking how low overall membership is. There is no way in hell the rates of PSSD are so low such that we are 600 out of tens of millions who have taken an SSRI. Especially when we are not necessarily anomalies -- rat studies have confirmed SSRIs cause life-long PSSD effects. I'm guessing many, if not most, people have minor lasting sexual sides. How can you tell slightly lowered libido? It can be played off as age, stress, life, natural variation, etc. Many jump on the next medication on the mary-go-round, never to know what their actual baseline is. Many make the trade-off of choosing mental health over sex life. Perhaps we have just been hit the hardest with the affliction. Even here, we are on a huge spectrum of severity.

As for how to raise awareness, it requires money. Studies. The pharmaceutical industry has no incentive -- it would even be detrimental -- to fund studies on the long-term negative effects of its drugs.

Re: Some possible forum ideas

Unread postPosted: Tue Apr 24, 2018 7:53 am
by Ghost
When I look at the reddit statistics and those from my site, it appears that about 5x as many people lurk as are actual members. I wish I know how many used this forum without actually using it.

I'd assume: ~3,000 lurk
~640 are on the forum
~50-100 maybe are actively productive here
far FAR less try and report back.

I have a lot of sympathy for being scared of things and having no money (I am in both categories). However, I really don't understand why people wait for others to always jump on the bullet before them. Everyone and I mean EVERYONE that I've seen cured has taken risk after risk until one of them finally helped. It's also a bit selfish to assume that other people will just jump on treatments until they find a good one and then you will just walk in and take the golden cure from the mess.

Nothing ventured, nothing gained.

I've spent nearly 4 years constantly trying new things and researching. I don't get why anyone would go quietly into the abyss of PSSD. If you don't cure it, you will die with it. It's permanent until it's cured 99% of the time. We need everyone trying things or researching if we want a shot at fixing this.

I don't care what someone has to offer, as long as it's something. Clearly the pace we've been moving at isn't fast enough, and I will do anything to speed that up - even if it pushes some people out of their comfort zone.

The idea with closed trials is that you couldn't see results from others unless you were trying things too. At the end of a set time period the threads would be opened up to the rest of the forum, but likely months later. I know other forums have sections for members only. It's not very uncommon. You can't even see the old yahoo forum without joining it - probably the only reason they got to 4,000 members.

Re: Some possible forum ideas

Unread postPosted: Tue Apr 24, 2018 12:31 pm
by Jaxx
I dont know, i had been lurking for 6 months because my account wasnt activated somehow, and i still "lurk" on my mobile daily. So the lurking numbers might be a bit off.

On topic, i do agree we need to try out more stuff, but thats a matter of dedication and making it interesting to discuss.
Having less negative energy in the wrong topics, with al due respect, would create a better environment where things are discusssed and tried out.
Currently people are not reporting back regularly, and it lacks theory why some stuff works and other doesnt.

Re: Some possible forum ideas

Unread postPosted: Tue Apr 24, 2018 1:07 pm
by Ghost
That's a good idea.

I don't want the forum to be a stage in the sense that a few people participate and the rest just watch. We need all the help we can get. If all the frequent posters died tomorrow, who would step up? Those are the people I want to step up NOW.

I've been less lenient with negative energy, and that trend will probably continue.

Something else important to note is that just because something doesn't work for one person doesn't mean it won't cure another. In fact, the vast majority of trials even for an exciting treatment, will fail. Waiting for 4-5 people to try it before you isn't productive because it may still work for you. pete and beetlebum are great examples with SJW and low dose. EVERYONE was scared of trying it, and it failed for most people. I suggested to beetlebum to try once more and that was the time that he took it and was cured. That was 3 years ago now - he's been living a normal life since (for all I know). same with pete. He went out on a limb and got better. I think both of them would still be here had they not taken that risk. It had been years of PSSD for both of them.

Re: Some possible forum ideas

Unread postPosted: Tue Apr 24, 2018 5:24 pm
by TalkingAntColony
I think seeing an active community and people self experimenting could inspire lurkers to join in. I'm less confident that closing info off to the public could have better inspiration effects.

Re: Some possible forum ideas

Unread postPosted: Tue Apr 24, 2018 8:24 pm
by naiverat
I agree, Ghost, that we need some way to encourage lurkers to participate. If that means making a valuable area of the website be exclusive to members, then that may be necessary. Perhaps also requiring an introduction and quick survey would be useful as well. What we really need is data. We have a shit-ton of anecdotes in various threads without a whole lot of formal, organized data.

I'm thinking upon registration, we could ask them a few questions in the following areas:

Drug they took, duration of medication use, how long they've had symptoms, whether they started pre- or post- drug, what treatments they have tried and whether they've made it better/worse, how symptoms have changed over time, whether they've noticed certain lifestyle changes (diet, sleep, exercise, stress) influence their symptoms, etc.

Of course, these won't all be numeric and easy to statistically analyze. But even open-ended text answers can be examined for some general themes/trends. The more data we can get, the better. We need some new logical points to work from. Each time a trend is observed, we must try to understand the underlying biochemistry that is giving rise to improvement.

I've done some work in survey design/statistics and while not an expert, I'd definitely be willing to assist with this if you'd like.

It's really hard to say how many lurkers have tried various treatments on this site, and with what degree of success. It's entirely possible a good number of lurkers have been greatly cured or improved with some of the more promising/popular treatment options listed here (SJW, inositol, etc.), and without their active participation, we would never know. It's really unfortunate.

In regards to trying new drugs/supplements, I don't think it's so much selfishness preventing others from experimenting, but rather the fact that many don't really have a point to begin from. You are really the sole source of pharmacological / neurobiological on this site, and most people are comfortable following your recommendations. If you put out more ideas, I have no doubt people would be willing to test them.

With that said, this site cannot depend entirely on you. We need more people to educate themselves on the science and start reading related literature. It's complex stuff, but with some effort, it's not entirely impossible to get a decent understanding of it and contribute some ideas. It would be great to get more people with science backgrounds on board. I, myself, don't have a background in biology or chemistry but am making an effort to understand as much as possible.

Re: Some possible forum ideas

Unread postPosted: Tue Apr 24, 2018 9:52 pm
by been_too_long
naiverat wrote: It would be great to get more people with science backgrounds on board.

Yeah would be great but a little hard too considering some of the toxic attitudes that prevail here. Why should these people of science get onboard when constantly alienated and insulted. People claimed they wanted a doctor on here so my fiancé joined. Notice she doesn't post anymore? She got tired of constantly seeing comments that people in her profession are evil and out to knowingly hurt people. I mean seriously, what do we expect when shit like that is spouted off.

yeah.. they spend 4 years in undergrad studies, 4 years in med school, 6 more years in psychiatry residency with the single motivation running through their head the whole time.. "I cant wait till can screw some patient over with a SSRI"