[Dean93]

TFR, so you mean like a personal log? That's a great idea, I'll try to figure out a way to implement it.

About scheduled chats, CCconfucius, I also think that's a great idea. Having a chatroom is worthless if there's never more than one person in it.

Thanks to everyone who has signed up at the forum, and thanks for all of your ideas.

[Dean93]

A forum for member logs is up at the forum. We'll have to standardize a way to organize them as time goes on.

[RhythmSpring]

I really have to commend Daveyboy on his theories. He may not have been on this forum for a while, but he certainly has been investigating the mechanisms of POIS for a long time.

His findings resonate with me the best. A while ago I posted a theory (that wasn't heeded to) about muscle tension during orgasm, and how it persists afterwords. For me, I tense my abdominal muscles (and probably more than that) during orgasm. HOWEVER, when I made a note to relax throughout orgasm and the days after, letting my belly relax, symptoms of this disease were much lesser.

Please listen to Daveyboy. The mind-body, emotion-posture connection is 100 percent real and pervasive in our health.

[sweden]

Great idea about a new forum with more structure. As a new member, it has been a bit hard to get all information.
I really think it's important get the old members to approve and submit to the new forum.

Will hopefully post my personal log in the new forum. Right now I'm trying Relora as suggested by many, but I have just started and are still waiting for results.

/sweden
 

[Dean93]

Another good point, sweden.

Thankfully, the 5 members that have decided to join are all members who have pretty much been here since the beginning. Actually, the very beginning (Thanks John!). And you're right, it's pointless to try to do anything without them, so I can only hope that more of the '07 members will join and that other members will follow their example.

Additionally, if you're someone who has been reading this forum, for however long, please introduce yourself, at either forum, and share your experiences! We can never have too many members or too large a base of sufferers. Thanks.

Ill be working on the other forum. Hope to see you there.

[demografx]

An Open Letter To Dean93

Dean,

Some of us here at the NSF-POIS Thread are finding concerns about freeforums.org.

DEAN, SINCE THERE APPEARS TO BE AN "OWNERSHIP/PROPERTY" CONFLICT OF INTEREST, PLEASE REMOVE IMMEDIATELY ALL NSF-POIS VERBIAGE THAT COMES FROM OUR 3-YEAR OLD NSF-POIS FORUM. UNTIL WE RESOLVE THESE ISSUES. THANKS. Demo

Here are some concerns, in freeforums.org's own words (My comments are ALL CAPS, freeforums.org are lower case):
 
"What’s next for FreeForums.org? We are constantly being asked what we are working on next. Ever since we launched back in February of 2007 we have been at the top in terms of innovation and features. I would like to take a few minutes to discuess [sic] what we have in store for you, our customer:

ONE OF THE KEYS TO NSF-POIS FORUM SUCCESS IS THAT IT'S FREE - PRESSURE TO PAY FOR BETTER SERVICE GOES AGAINST OUR 3-YEAR FORUM PHILOSOPHY IN ACTION - Demo
 Premium Service — In the coming weeks we will give you an option to purchase a “Premium Forum” for a small monthly cost. This will include additional features and mods not possible on the free system.

AS YOU KNOW, DEAN, I HAVE FAILED REPEATEDLY TO GAIN ACCESS TO MY ADMIN FUNCTIONS (phpBB3) - AND YOUR SUGGESTION OF 'LET'S CHAT SOME DAY AT THE CHATROOM ABOUT IT' IS NOT COMFORTING IN THE LEAST! - Demo Simple Admin Panel — Lets face it, the phpBB3 admin panel wasn’t designed for non-tech savvy users. In the next two months we will be creating a simplified version of the admin panel that you can choose to use.

STATED BELOW IS A BLATANT CONTRADICTION TO OUR FORUM. IT IS A CONFLICT OF INTEREST. WE ARE 100% NON-PROFIT. AND WE RELY ON DONORS...DONORS WHO WOULD FLEE INSTANTLY IF THERE WERE EVEN A HINT OF A SNIFF OF MONEYMAKING OFF OUR MISERY! - Demo

 Make Money! — You put a lot of work into your forum because, like us, you are passionate about what you do. But who would complain about a little extra spending money for your time?

"We will launch various ways of making money off your forum."


I DON'T THINK ANYONE HERE IS WARM TO THE IDEA OF "INSTANT MODERATOR" - WHICH COULD INCLUDE THOSE WITHOUT THE FAINTEST NOTION OF WHAT POIS IS! - Demo
  More Mods! — Can you ever have enough mods? We don’t think so either. With our new development cycle we’ve been releasing new mods in record time.

LASTLY, SOMEONE JUST BROUGHT TO MY ATTENTION THAT EVERYTHING WE WRITE IS FREEFORUMS.ORG PROPERTY. THIS WILL NEVER BE ALLOWED! IT COULD EVEN PREVENT SAVING LIVES BY HAVING A FORUM FRIEND WRITE AN ARTICLE, A BOOK, A TV, RADIO SHOW, OTHER INTERNET PUBLICITY. THIS IS OUR PROPERTY. PERIOD. SO, ONCE AGAIN, PLEASE REMOVE ANY NSF-POIS VERBIAGE UNTIL WE STRAIGHTEN THIS OUT - Demo

continuation of freeforums.org post:
As always we will be working hard to bring you the very best tools and resources to run your community. If you would like to see anything added please let us know!"

Posted by Division in Infrastructure, Marketing & PR 3 Comments This entry was posted on Friday, May 29th, 2009 at 1:07 pm and is filed under Infrastructure, Marketing & PR. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

3 Responses to “What’s next for FreeForums.org?”
1.Inside look at our Premium Service | Inside FreeForums.org Says:
June 21st, 2009 at 2:06 am
[...] What’s next for FreeForums.org? Jun [...]

2.creativebot Says:
June 27th, 2009 at 10:28 pm
That development cycle is pretty nifty. I am also liking the Make Money idea of your forum. That will get people interested in creating long lasting forums instead of multiple! 

3.“What’s next” Progress Report | Inside FreeForums.org Says:
July 5th, 2009 at 3:10 pm
[...] month I made a post sharing a few big projects we are working on. I wanted to detail the progress as well as other things coming up [...]

[RhythmSpring]

I can't say enough about this mind-body connection. Of course there aren't any scientific trials on this, what do you expect? All you really need is to personally see the connection.

Sit and do nothing for 30 minutes. Completely relax everything. Listen to music if you get bored. But pay attention to your body. FEEL your body and its insides. Pay attention to your breathing (don't force any type of breathing, just observe it) and pay attention to your chest and abdominal muscles and everything else.

And pay attention to your thoughts. You WILL move according to the thoughts you have. A fleeting thought of self doubt might be a tense in the solar plexus. Perhaps a worry about the future a twitch in the elbow. Maybe an impatient thought will be a sudden itch somewhere. An abnormal eye shift. A jaw clench.

Psychological issues = bodily issues and vice versa. I don't intend to convince everyone, but I implore you to keep the idea in your mind as a frame of self-observation.

[demografx]

RhythmSpring, very interesting. When I recently had surgery at one of the world's most modern hospitals, they very much espoused this kind of mind-body connection. I have practiced TM for over 25 years, and it usually leaves me feeling better, but I also appear "spacey" and feel sleepy. But this could also be my strange body chemistry; POIS is just one example. If I do 20 minutes of cardiovascular exercise for example, I wind up "wired", as if someone dumped a gallon of coffee down my gullet; and jet lag can be as bad, if not worse, than POIS for me!

But now I'm willing to try again.

I have a sneaking suspicion that since the blood-and-oxygen flow to my brain and body have been progressively more choked off for many, many years (which my open heart surgery has hopefully "cured") - I'm excited that it's even possible to gain the benefits that you suggest.

Thanks for posting that, RS!

[Dean93]

Demo,

Premium Service — In the coming weeks we will give you an option to purchase a “Premium Forum” for a small monthly cost. This will include additional features and mods not possible on the free system.

I don't see offering services as pressure, they can be declined simply by ignoring them, and the site will remain free.

Another quote from the same blog:

Q) So FreeForums.org is no longer free?
A) We will always remain 100% free. However, some users have expressed interest in paying money for features that we otherwise couldn’t release due to expensive development or upkeep costs. For those users, they can pay to have a Premium forum.

It's an option, not in any way a requirement.

I offered to help you with your administration via chat because it's in realtime, and it's easier than going back and forth in private messages, that's it. The first time you contacted me about having issues with your admin functions was just yesterday. I think in time, that would have most definitely have gotten sorted out.

About "Making Money", what has to be understood is that forums are not created specifically for rare disease groups, of for anything in particular. They are made to be able to accommodate almost any topic. To do this, they offer a wide range of services. Tools to make money would be great for businesses. We're not a business, so were obviously just not going to use that feature; it's not for us. But it's being there for anyone's use is not a sign of a website that has any bad intentions.

Your next point is just a simple misunderstanding. Mods, as used in your quote, stands for modifications, and NOT for moderators.

If you scroll to the bottom of this very page, you will see this:

"The contents of this site are © The Naked Scientists® 2000-2010. The Naked Scientists® and Naked Science™ are registered trademarks."

What does this mean? Does it not give the people here ownership of this forum? What is the difference?

I'm thinking it's more of a legal sort of thing. It would be silly for a hosting website to try and "steal" the information or work of forum members, at freeforums or at NSF. I can't say I know, and I'm not saying that we shouldn't be cautious or check up on these things.

Finally, I accept that a lot of people are being critical about this idea. I'm not suggesting hiding from the facts. But I don't think were at the point where the forum has proved itself to be impossible. There are a lot of benefits to the forum, some of which have already been discussed, and their value should not be so quickly forfeited.

[demografx]

We could debate this for ages. Your site is a moneymaking site, which goes against the grain of a non-profit "charity" which is the closest concept in similarity to ours. Just the idea of having to pay a premium...for better service...I find offensive.

NSF-POIS is run by a group of scientists. To promote science. Period. It's owned by a physician, with prestigious university affiliations.

Money changes hands nowhere in the organization.

That "financial-motive purity" plus the reputation/prestige paragraph above that, spell out a perfect credibility stance for our small, unrecognized group of sufferers in need of the attention of top flight global quality researchers who are in a position to help us wipe the scourge of POIS off this planet.

And freeforums.org is blatant about their non-user-friendly tech administration. As I said, it's ridiculous that I spent an hour, with no luck, trying to access admin functions. And at this stage of my post-surgery rehab, an hour is a GIANT amount of time and energy for me.

Your initial insistence about abandoning this "old" forum only came about under pressure from me and others.

To everyone: I think those of you who know me well understand that I want every possibility of a betterment for POIS sufferers. So PLEASE feel free to PM me or post your thoughts about this forum here!!!

[demografx]

     



Hoping the POIS "Census" Worldwide is LOWER than                    2009!!!

[Counterpoints]

Interesting discussion about the forum. As I see it, there are three central issues here:
1) Is the host for-profit?
2) Does the host have rights on the content posted?
3) Does it matter either way?

In regards to 1), this will essentially always be the case.  There's no "free lunch".  Essentially any site offering full fledged forum administration to strangers is only going to do it if they think they can get something out of it.  But does it matter?  In this case, probably not.  These sites are usually massive -- far too big for the administrators to take a great interest in our forum.  And even if they did, would they do anything?  Probably not.  It's too much effort.  The same goes for content rights.  And in regards to content -- I don't really see the problem with them 'owning' the posts.  It feels uncomfortable, but is it going to make any practical difference?  Again, probably not.  Sometimes we have to bite the bullet and be pragmatic to get anything done.

Having said that, it's obviously preferable to have a trustworthy host, if it's a realistic option -- and I think it is. For this to happen, one of us would have to host the forum on our computer, or more likely, we could all pitch in and buy some server space somewhere: so we have complete control over everything.  Either option would be cheap and easy.  I'm guessing about $15/month.  I'd happily contribute towards this... but I don't have time to direct this initiative.

Finally, we can all get a bit passionate about these issues, and take things personally -- because we all care so much about what's going on.  Having read through some of the recent posts, I don't think there's any major or immediate concern. So everyone, please relax. In fact, I think it's really good that we're working on expanding... so let's all work together to find the best solution to this issue.

[lauracostis]

report update on "low dose naltrexone", after titration up into therapeutic range @ 3-4.5mg, i feel unbelievably great. i am at 3mg right now. i hope to reach the target dose, which is 4.5 mg, in the next week or two. if my newly achieved well being is a fluke, i will be in big trouble because i just signed up for another chemistry class on my schedule. i feel like going to med school instead of nurse practitioner school now.

[demografx]

Counterpoints, thanks for the sober reflection!

My sense is that TNS is more altruistic than other sites. I know that fundraising is needed just to keep up with ongoing site requirements. All-volunteer staff as far as I can tell.

[CertainlyPOIS]

Counterpoints, thanks for the sober reflection!

My sense is that TNS is more altruistic than other sites. I know that fundraising is needed just to keep up with ongoing site requirements. All-volunteer staff as far as I can tell.
[/quote



Have you tried low dose nalxolene with pois yet. And has it kept stoping NE

[CertainlyPOIS]

I just wanna make mention on something on milk or a tuner caserole. I ate tuner caserole while i was feeling fantastic,  all my energy was zapped right away, i was going to go exercise and that was just impossible. ( it felt like pois fatigue but mild pois brain.) Other than tuna there was cream of cheese in the casserole and milk.
Today i drank lots of milk and cheese and feel that same fatigue..

I will eat alot of another type of food and see what happens.   

I know you guys talked about it before but this is my first time noticing.

do you guys think it is because of calcium or something else in milk and cheese.

[John21 (OP)]

CConfucius,

do you guys think it is because of calcium or something else in milk and cheese.

Me thinks you should load up on spinach! Who knows, maybe this crazy theory has legs: The first time I O'd on this regiment I did have some burnout a full week after, but since then I have had two NEs with no effect. I'm still dreading that burnout will reappear, fingers crossed. I'll keep ya's posted.

[sweden]

Regarding the forum site:

I really think that this is not an issue about what is best right now, it more of an issue about what will make sense in X years when new members (or scientist) join and try to find more information.
We really want to make sure that what is chosen now is something that works out in the next couple of years; both when it comes to attract the existing users (and most importantly many of the "very active users") and also when it comes to know that the forums will continue to exits in the future.

I have not investigated what's available but I'm sure that if the "current" solution is not working, there must be other solutions that has a very low or no cost. If cost is an issue and Dean & Demo can agree on the "perfect" solution, I'm willing to donate $50 for this cause today.

Personally, I do not care who owns my posts as long as they help someone and will be available for others. I do not care about if someone makes a little money on my posts (or payments) as long as we can increase our chances of finding help/cure.

If this decision needs some time, let it take that time. I think it would be very bad if this ends up with separate forums.

[lauracostis]

B_JIM thanks for the encouragement.  i have had one NE while on LDN, i woke up as it was happening and tried to stop it. only a small amount of fluid came out, but only produced mild pois symptoms.  my previous two ne's before, were neck brakingly severe, but a lot of fluid was released.  i will need six solid months before i can report a percentage of relief for pois.  i feel so good, and my memory is better than i thought possible.  i cant imagine that it has not severely improving pois symptoms. i think if normal people took LDN they would become super human. as an antidepresent it puts all others to shame, and i have tried everything except mao inhibitors. 

[demografx]

Laurac, I was extremely resistant at first, but the most potent antidepressant for me is stimulants.