Multiple forums, One Community ?

[Colm]

Hi Guys,

I'd like to encourage a discussion here about what seems like the start of a very dispersed POIS community.

I am now seeing two additional discussion groups for POIS, one on reddit, another on Skype and of course there's here and NSF.

While this may be a good development, that is if it all furthers our aims, it could also water down the power of the group at a key time in the emergence of a cure for POIS.

Reading a bit of the new posts elsewhere, this may have come out of shortfalls in the functionality and security of the POIS forum. There is mention that no new members have been able to sign up to POIS forum since 2014.

Also, the understandable absence of Daveman (managing content and technical with Demo's great contribution), may be influencing some changes here.

Whatever else we keep, I feel strongly that we need a maximum of two forums or is it fora, otherwise we become weaker in building a resourceful approach to research and potential cures.

Anyone got any thoughts?

[BluesBrother]

I think you raise a very good point! We are a small community and we cannot afford to split into smaller fractions! It makes sense to use other resources in addition to this forum where they are complementary, e.g. Skype for real-time communication (or actually talking to people). However, I also see the danger of watering down the community and of duplicating threads. What is the reason for people not being able to register on the forum?

[Colm]

I think you raise a very good point! We are a small community and we cannot afford to split into smaller fractions! It makes sense to use other resources in addition to this forum where they are complementary, e.g. Skype for real-time communication (or actually talking to people). However, I also see the danger of watering down the community and of duplicating threads. What is the reason for people not being able to register on the forum?

I haven't got that information, hopefully Demo or Daveman can tell us if there is a problem with people registering. I saw it on a couple of the other forums.

I do know that without funds, it's hard to expect Daveman to keep trying to put free time in here to
Solve problems. Maybe we all need to put a small donation in for upkeep of IT basics, like registrations and spam, otherwise our community is going to be all over the place - bad news for us all in my opinion.

Can't remember who started the Reddit, but perhaps they could suggest why we can't have all communications going through here? Perhaps reddit is more social media savvy ?

[demografx]

Please keep in mind, that even with all the problems, that our "core group" here is registered as "POISCenter.com" in many key places: NIH, NORD, Rutgers, etc.

But I'm all for any method that aids our purpose: getting the word out to the POISer who suffers and thinks there's no help out there!

[Prancer]

I'm also a big fan of standards, and a central location for discussion helps a lot with organization, communication and unity. NSF is a huge repository of useful information, and there's nothing wrong with NSF itself, just the POIS topic, when we have misinformation being spread around by spammers every few days. In addition to unity & centralization, PoisCenter is a safe place that doesn't allow spammers to ruin it for everyone. Elsewhere we may have the same old, tiring "Buy my book", "follow my proprietary protocol", "but Mercola said...", "take my magic pills", "listen to my speech" stuff going on. Bottom line, newcomers should know that PoisCenter has something that the others don't: TRUST! They will know that we are moderated, science-based, and absolutely 100% non-profit. Our sole goal is to find a cure for this illness via research - that's it!

To repeat: PoisCenter is non-profit, science-based, rational, and trustworthy! This type of guarantee is the final and most important reason why there should be just one main forum.

Our sole goal is to find a cure for this illness via research, helping each other along the way - that's it!

With that said, getting the word out and directing people to the forum is great, like Stef mentioned. And Reddit's a great place to do that.

[dean93]

I'm dean93/Gilman Ross/underswamp1008, who started the subreddit. I'll keep this brief.

I talked to both Demo and Daveman over a week before I open the subreddit. Demo seems not to be in great shape right now, and Daveman seems to be very busy. I completely understand all that, and obviously appreciate all of their efforts twrds the group over the years. However I've received several messages from people saying they couldn't make an account, even after the sent the required email. This is for months, mind you. Obviously nothing personal, but I don't think anyone thinks that's acceptable.

Examples:

http://www.reddit.com/r/POIS/comments/302j7v/discussion_general_pois_discussion_thread_if/cpomoly

http://www.reddit.com/r/POIS/comments/302j7v/discussion_general_pois_discussion_thread_if/cpts18v

http://imgur.com/wADRssj (this guy sent two emails over months and still couldn't make an account)

I can only imagine how many suffering people tried to join the conversation, but couldn't.

This is what I'm currently seeing at the bottom of the homepage

http://imgur.com/dgnhMRz

There are either bots, or men with POIS who can't make account and can only read posts (could be both)

Also, I made this post over two weeks ago

http://poiscenter.com/forums/index.php?topic=2043.0

gave reasons why reddit would be a helpful site to use, offered moderatorship to the leadership here, and asked for everyone's thoughts. I got no response besides one from a single person (Nightingale).

I even made a post nearly 4 months ago asking where donations could be made

http://poiscenter.com/forums/index.php?topic=1564.0

and there it still sits, without a single reply. If people can't  manage to make donations when they explicitly come out and ask to, I don't know how anyone ever expects to make any progress.

Not only my posts, but many of them, will get many, many views but hardly any replies at all. It's either people just can't get in to post, or group activity has slowed way, way down since the NSF days, and that doesn't seem likely for a group of men desperate to save their own lives.

Again, I'm not trying to diminish anyone's efforts here, I just want what everyone else here wants, a place where POIS sufferers can best communicate and help each other so that we can eventually better all of our lives.

[Daveman]

Dean, I really don't know where you're coming from.

In the last few weeks you've communicated a desire to get a conversation going over what plans could be made for poiscenter. As I mentioned, for technical reasons, it's difficult for me to get to Skype, but whn I have, and tried to communicate with you, it seemd to take quite some time just to get any interchange going. You express interest, but when we approach there's really very little ACTUAL response.

So I answered with a couple of PMs and made several suggestions as to how we could begin to straighten things out. So far no response.

I wonder if you are just looking to justify your efforts at Reddit?

I admit that work needs to be done. Unfortunately everyone, I have begun a very time consuming project of a life-time. It would be wonderful if we could get a team together to put some energy and effort back into the forum. But it requires time, effort and dedication. A daily effort of at least 3 hrs is required minimum, just to bring energy levels up and start activity within the group. Another 2 hours a day are needed to filter and clean spam and moderate activity.

We need to install spam filters which help to reduce our workload, and we need to clean up the home page.

I know there is work to do, but I can't really figure out if you want to be constructive or destructive about it all.

I think that if you wanted to help, or benefit the community, it would be far more productive getting poiscenter back in working order than trying to set up something completely new on reddit or elsewhere.

[Nightingale]

I wonder if you are just looking to justify your efforts at Reddit?

Please. Please, none of this... =/

Daveman is a really busy guy. I mean he's got POIS AND he's busy. That takes a ton of energy!

Gilman, I told you this early on: BE PATIENT with this community.  What you are trying HAS been tried before (in different styles) over the years, but POIS is the reason it hasn't gotten to the level you are wanting it to. NOT people's lack of creativity, passion or desire! The very fact you are exhausted and frustrated has a hell of a lot to do with the fact that you are suffering from POIS symptoms, right? It takes energy, motivation and consistency from many people at once to build what you are trying to build. And that's exactly the MOST difficult thing for people with POIS to have!

So let me ask you: should you be surprised or frustrated?

I had to realize this lesson the hard way. I have to be patient with this, because POIS is TREMENDOUSLY insidious. It's almost designed to defeat efforts like what you have made. So...

Please don't give up! You wanted your goals to happen sooner, but they didn't. Don't throw in the towel. Especially don't call people out, it will just make what you want take longer. Everyone here is dealing, barely. You've got a lot of pep, more than I've got. I probably would have started the Reddit sub already myself if I hadn't been so consumed with my POIS symptoms, and all my other comorbidities that make just getting through the day a victory.

Today was a good day for me, energy wise. I was about to head to Reddit to post something I had just found today when I saw this. So I had to comment first.

You are not alone in your frustration. Call me on Skype, I'm open to hearing you out!

[Prancer]

Technical problems can happen; they did for me when I first tried to sign up a few years ago, but it was fixed. Normal. Temporarily, Reddit may be great to use if there are any problems here. And there is desperation, yes, but patience is also important. The research will come. Problems will be fixed. Discussion will resume normally. But if we have a hundred different discussion groups, it really does dilute the convo, while potentially allowing spammers or quacks to mess up the atmosphere of trust, logic, and method, like we saw happen @ NSF's POIS topic, over at the other discussion group(s).

[dean93]

" it's difficult for me to get to Skype, but whn I have, and tried to communicate with you, it seemd to take quite some time just to get any interchange going. You express interest, but when we approach there's really very little ACTUAL response."

This just isn't true, man. After a quick word count, I've sent you 149 words on skype while you've sent me 56. I've responded to all but one of your messages within five minutes. The last person to speak on skype was me, where I left about a paragraph or two's worth of text, and that was back on March 17th. I had sent you some PMs on here back on March 16th, and I've only gotten any substantial response from you by about March 28. Again, that's FINE. I understand that you are busy, it's the first thing I said in my last post. Demo expressed to me that he wasn't feeling great, and couldn't deal with these things right this second and that was OK as well. While these are urgent matters, I'm not trying to rush anyone. I thought I made it clear that my actions/words were not meant to be an attack on anyone or their efforts. However:

"I wonder if you are just looking to justify your efforts at Reddit?"

What could possibly be my motivation to do that? I don't even understand what I'm being accused of here. ...presumably, we all have the same goal in mind: organize, discuss, act; ameliorate POIS. I guess my assumption of good faith in others and attempts to be understanding are not reciprocated.

As for the technical state of the forum, excuse me if I'm out of my depth (technically) here, but I'm not sure what exactly on an internet forum would take 5 hours per day to maintain. Reddit already has the infrastructure built (no money/ large amounts of time required) to easily handle most of this, it seems. There are also other benefits (community, added functionality, visibility, etc) but maybe that's not immediately relevant right now.

I guess that's it for now.

[dean93]

I just want to let everyone know that I'm not hostile at all in typing any of this. I don't see any reason to be.

Nightingale, I get that DM is busy. I put it in my above post more than once. I don't see where I've expressed any frustration, or impatience, or "called anyone out". Again, I assume that everyone here has the same goals, and I'm just trying to point out problems so that we can find solutions to meet those goals. If there have been any personal attacks, they have been towards me. The subject was brought up, and I'm simply explaining myself, not trying to call anyone out.

Prancer, just want to say that I share your concerns about keeping a high level of scientific standards.

[Nightingale]

Demo expressed to me that he wasn't feeling great

No one is feeling great...

Look, "I wonder if you are just looking to justify your efforts at Reddit?" was not a good thing to write, but forgive Daveman. He's been around this community long enough for vitriolic rivalries, personal agendas, psuedoscienticfic wacko gangs of abusive forum trolls to all pile up and piss him off, along with everyone who's been around this internet community long enough. It's not easy for anyone to endure, Daveman has his way of coping with stress.

You are stressing, so is everyone. I'm sorry you don't feel listened too or understood, but I'm really not making a leap here by saying no one including Daveman wants anyone else to feel any worse than they already are. This disease is shitty enough as it is.

But I don't understand why you feel it appropriate to say to say what's acceptable for something you have not been promised. No one promised you that this forum (owned and run by Daveman as a gift to the POIS community) was going to be a complete solution to an online POIS commiunity, clearly. I too am unhappy that many people have been unable to register on these forums. But what I AM happy about is what Prancer stated a few posts back:

"To repeat: PoisCenter is non-profit, science-based, rational, and trustworthy! This type of guarantee is the final and most important reason why there should be just one main forum.

Our sole goal is to find a cure for this illness via research, helping each other along the way - that's it!"

This has been a huge accomplishment, and I give Daveman a lot of credit for this. But since there are flaws in the way this is run, I APPLAUD you for having the energy and creativity to create 2(!) new avenues by which men with POIS can join in community. Thank you!

I don't know what to say to wrap this post up, but when you give a lot of yourself, make sure that you don't do it with the expectation that someone is going to give a lot back necessarily. Give when you've got something extra to give, because if you do it with the expectation of something in return, the person might just not be ready or able to reciprocate. Life has it's ways of making it more difficult for us at times. When life swings back our way, we find that extra something to give back. You'll make it happen, you've got the desire. People are inspired by it, even if they aren't typing it out, calling up their local newspapers or writing AMAs yet. I know I am

[Prancer]

Dean93, it's all your fault.  Just kidding!! :]

You have good intentions. Don't get too upset over this. We like you and want you to be comfortable. Your concerns over the ability for newcomers to be able to join in on the discussion are completely understandable. PoisCenter is not perfect. My guess is that those problems will be resolved in the coming weeks or so. Until then, those who weren't able to sign up can perhaps share their thoughts over at Reddit. And what they write can even be transcribed back over here. But "starting over" completely at Reddit is probably not a good idea for the reasons mentioned before. To use an analogy, the authenticity features on money allow people to know that the cash they hold is to be trusted. Likewise, PoisCenter has the equivalent of those authenticity symbols, so anyone that has any doubts about what source to trust (as they should) will be glad that PoisCenter exists.

[Nightingale]

But "starting over" completely at Reddit is probably not a good idea for the reasons mentioned before.

dean93 is not proposing that, though. He's been very open and clear that is not his intention.

[BluesBrother]

It would be wonderful if we could get a team together to put some energy and effort back into the forum. But it requires time, effort and dedication. A daily effort of at least 3 hrs is required minimum, just to bring energy levels up and start activity within the group. Another 2 hours a day are needed to filter and clean spam and moderate activity.

We need to install spam filters which help to reduce our workload, and we need to clean up the home page.

Daveman, it seems a good suggestion to get a team together for managing the forum - to support you and distribute the workload. We could start a separate thread in which we discuss how to go about this. The workload you mention seems very high to me - I guess that with more advanced forum technology (especially regarding spam filters) the workload should be far less. Maybe there are already people on the forum which have experience with forum administration? Also, I know that there are quite a few people who work in IT.

[Clycos]

Daveman I am volunteering if you need help, let me know!

[Prancer]

But "starting over" completely at Reddit is probably not a good idea for the reasons mentioned before.

dean93 is not proposing that, though. He's been very open and clear that is not his intention.

I know, and don't worry, dean93, you've been a member a lot longer than I have (since 2009 I think). You're not doing anything wrong whatsoever. What I said before was just a general suggestion/observation. In the end, each individual should make his or her own decisions, but collectively our goal is the same, just like you said.

[Ccconfucius]

It would be wonderful if we could get a team together to put some energy and effort back into the forum. But it requires time, effort and dedication. A daily effort of at least 3 hrs is required minimum, just to bring energy levels up and start activity within the group. Another 2 hours a day are needed to filter and clean spam and moderate activity.

We need to install spam filters which help to reduce our workload, and we need to clean up the home page.

Daveman, it seems a good suggestion to get a team together for managing the forum - to support you and distribute the workload. We could start a separate thread in which we discuss how to go about this. The workload you mention seems very high to me - I guess that with more advanced forum technology (especially regarding spam filters) the workload should be far less. Maybe there are already people on the forum which have experience with forum administration? Also, I know that there are quite a few people who work in IT.

This is the key right here.
I volunteer my services, am not strong IT but i can do the needed smaller things

[victor.kons]

No need to manually clean up forum from SPAM every day. This takes enormous efforts and it is not needed.

Dave, you are approaching at the task from the wrong side.

You should prevent bots from registering on the forum, so that they weren't able to post SPAM messages. It is not enough to enable captcha for user registration. Most of captcha implementations in PHP systems like this forum have been cracked ages ago. You need to enable text challenge on the forum for user registration. E.g. users should answer the question like, 'what is the color of the sky' or something similair when they are registering. Question need not be complex.

The point here is for spammers to break captcha implementation you need to do it one time and enjoy SPAM-ing on multiple sites, but for cracking text challenge you need to do it _manually_ for each website, they will not bother to do that, at least not often. I have got text challenge cracked on my forum site once in 3 years and I have just changed the question during 2 mins and that's it. I don't have to clean up forum each day for hours.

Victor

[Daveman]

Hi Vistor, good to see you.

Thanks, I remmeber you mentioned this once before. At that time we had an earlier version of the forum that didn't have the capacity for "questions" and it required hard coding of that mecanism.

But now with the new rev level, 20, I think, it comes with that capability. We already have two questions that require answering on the signup page. Not sure how the bots get past them.

At one point I screened and blocked the scanner bots. There are usually about 2 to 5 new per day. (Maybe not new, but with changed IPs.) I also had a link to a  spammer database that marked al known spammers. (and reported new ones). Thos two things helped a lot, made the work manageable. But with this new rev we don't have those tools. Just haven't been able to get to it.

But thanks for the hint.