CPAPtalk.com

I'm starting to think that forums biggest concern is patients waking up and leaving.

I bet their ban list must be pretty big by now o-O

SleepingUgly wrote:I understand that they don't want people publicly posting how to change settings without medical oversight. But I hear the frustration in Roby Sue's post, and I get it. It's just too much work to try to help people with so many hands tied behind our backs. Sure, I can submit an article that can be posted in some section that personally I've never even noticed, but it's not posted in a context for which it's useful. And it's too much work to do it that way.

It's been a very, very long time since it happened. But the "negotiations" with Vicky on the ASAA board to get my "Taming the insomnia monster" post added as a stickly literally took weeks. And then when the moderators agreed that maybe insomnia was a common problem for newbies (at first they told me it wasn't), they totally chopped up the nice formatting job I'd done when I submitted the post to Vicki to have it added as a sticky.

I do tend to go over to the ASAA on a semi-regular basis mainly in search of folks who need to be steered here because the questions they need answered violate the ASAA guidelines. Folks without any doctor or insurance who need to self treat out of desperation. Folks asking for links to the software with NO responses to their posts. Folks in the process of getting snookered by shady DMEs.

And I look for folks who have been given bad information---sometimes from one of the moderators themselves. That board, in spite of all its rules, seems to have a pretty high noise-to-signal ratio. There's much more misleading and inaccurate info posted over there than over here, or so it seems to me. Case in point: Today I answered two posts asking what the heck a Pressure Pulse was and whether you need to worry about them. One had no responses, but the other? In response to a question about Pressure Pulses (in a thread titled "Pressure Pulse", moderator Vicki said:

Exactly where are you reading those numbers? Are they off of a CPAP? What do they signify, are they mask leaks, AHI, etc? What are the units of measurement after them?

SleepingUgly wrote:Speaking for myself, I'm tired and my alert time is limited. Do I want to spend it asking permission to "publish" an article that will be tucked away in some corner?

That's why after fighting the battle to get Taming the Insomnia Monster posted as a sticky, I have chosen NOT to try to follow up on other standard posts---things here that I can simply say: See my post on *** at <url>. I also get sooooo frustrated when I can't send folks over there to JanKnitz's blog entries---both about the mask fitting tips and the ones about dealing with the DMEs.

Then there's the arbitrary moderating, banning, and locking down of threads, which strikes me as unprofessional from what's supposed to be a professional board. It's too much work, my hands are too tied, and it feels too much like walking on eggshells in a mine field when you don't know what's the next thing that's going to set some personality off and get you moderated/banned/locked down. Personally I could live without that entire site except that they have more information on oral devices than they do here. It's a shame.

I agree 100% with you SleepingUgly on these points.

I also get sooooo frustrated when I can't send folks over there to JanKnitz's blog entries---both about the mask fitting tips and the ones about dealing with the DMEs.

That was one of my top frustrations. I worked around it by telling people what phrase to google to access it but that felt so absurd to me.

Wow, the information on your blog on insomnia should have been a no brainer as far as accessing it since that is a major problem in adjusting to pap therapy. Once again, that proves my point that this is about excessive control and nothing more.

49er

PS - Forgot to mention that I was really shocked when you asked Daniel very nicely to use his influence to get DMEs to stop prescribing bricks and in response, I felt he blew you off in a rude manner.

SleepingUgly wrote:I understand that they don't want people publicly posting how to change settings without medical oversight. But I hear the frustration in Roby Sue's post, and I get it. It's just too much work to try to help people with so many hands tied behind our backs. Sure, I can submit an article that can be posted in some section that personally I've never even noticed, but it's not posted in a context for which it's useful. And it's too much work to do it that way. Speaking for myself, I'm tired and my alert time is limited. Do I want to spend it asking permission to "publish" an article that will be tucked away in some corner? Then there's the arbitrary moderating, banning, and locking down of threads, which strikes me as unprofessional from what's supposed to be a professional board. It's too much work, my hands are too tied, and it feels too much like walking on eggshells in a mine field when you don't know what's the next thing that's going to set some personality off and get you moderated/banned/locked down. Personally I could live without that entire site except that they have more information on oral devices than they do here. It's a shame.

Great points SU.

I also understand why they didn't want people publicly posting on how to change settings. But contrast that with sleepguide.com which doesn't allow that either but still allowed you to discuss the issue theoretically which the ASAA board doesn't even allow.

Again, I felt it was all about control and nothing more.

49er

Re: PhD's

I used to have a small number of coworkers with PhDs in a professional setting. About half of them weren't common sense smart enough to turn on a light switch without getting their **** caught in the ceiling fan.

49er wrote: 49er

PS - Forgot to mention that I was really shocked when you asked Daniel very nicely to use his influence to get DMEs to stop prescribing bricks and in response, I felt he blew you off in a rude manner.

Yep. I remember that now that you mention it. And that's one of my biggest problems with ASAA: They say they want educated, pro-active patients, but they seem to refuse to use their obvious ties to "the industry" to take some public positions (such as lobbying DMEs to stop supplying bricks) that would make it easier for patients to become educated and pro-active.

For those who are interested in the thread 49er mentioned, it can be found here: http://www.apneasupport.org/technology- ... 5e44264c9b

archangle wrote:Re: PhD's

I used to have a small number of coworkers with PhDs in a professional setting. About half of them weren't common sense smart enough to turn on a light switch without getting their **** caught in the ceiling fan.

As a person with a PhD in math, I could not agree more: A lot of PhDs are remarkably lacking in common sense.

SleepingUgly wrote:Then there's the arbitrary moderating, banning, and locking down of threads, which strikes me as unprofessional from what's supposed to be a professional board. It's too much work, my hands are too tied, and it feels too much like walking on eggshells in a mine field when you don't know what's the next thing that's going to set some personality off and get you moderated/banned/locked down.

You guys are like soooo yesterday.

If you want to go through a door, don't try to go through the door-- open it.

https://www.facebook.com/sleepapneaassn

mollete wrote:

SleepingUgly wrote:Then there's the arbitrary moderating, banning, and locking down of threads, which strikes me as unprofessional from what's supposed to be a professional board. It's too much work, my hands are too tied, and it feels too much like walking on eggshells in a mine field when you don't know what's the next thing that's going to set some personality off and get you moderated/banned/locked down.

You guys are like soooo yesterday.

If you want to go through a door, don't try to go through the door-- open it.

https://www.facebook.com/sleepapneaassn

Guilty as charged.

Thanks for the link, I will have to check it out.

49er

BTW, this thread (or more accurately the thread on AASA) has made me a true believer in the power of an UNmoderated forum.

Or another way: This forum advocates free speech in all of its glory. I am reminded that I should happily tolerate OT stuff a person finds less valuable for the right to add stuff (OT or not) that a person finds more valuable.

Huh .... I am so glad that I never registered over there at ASAA. I remember finding it back when I was first starting out on cpap. I read a bit there, then read a bit here, and immediately chose here, because I found this place more welcoming, less snooty, less judgemental, and less restrictive than over there.

So after reading some of the ASAA thread links, I have a couple of questions. Daniel is an Irishman who lives across the pond and uses the public health care system over there. So what the heck is he doing moderating the forum for the AMERICAN Sleep Apnea Association?

And he supposedly looks in over here (and looks down his nose). So is he registered here? Under what name? (Just so I can look out for him and his 'tude).

readyforest, VERY good questions!!! I, too, will be looking forward to any comments on this!

khauser wrote:BTW, this thread (or more accurately the thread on AASA) has made me a true believer in the power of an UNmoderated forum.

Or another way: This forum advocates free speech in all of its glory. I am reminded that I should happily tolerate OT stuff a person finds less valuable for the right to add stuff (OT or not) that a person finds more valuable.

You just want a hand knit baby blue item with furry white trim to wrap around various body parts....

Why don't we all walk over there, virtually speaking, and start posting prohibited content and send the moderator(s) into hissy-fit mode? They can't catch us all.

SBF

Slartybartfast wrote:Why don't we all walk over there, virtually speaking, and start posting prohibited content and send the moderator(s) into hissy-fit mode? They can't catch us all.

SBF

It's there house.. and the mods are just doing what they believe is right, and following (misguided) protocols set out by their organization.

Best to ignore them and let them be. Making them hate us even more isn't going to help anyone.