CPAPtalk.com

jnk wrote:As Mr. Montero said in the book of Biogenesis, let the one without vice cast the first pitch.

So that's His last name!

"IMHO", you woulda thunk He'd have a better batting average.

jnk wrote:I was once a member of Carbonman's thong...

That's disgusting.

Saw Mollete's posts over there. Made me smile.

I can't wait to see Daniel's response. Even subscribed to the thread so I'd know when he answers (if he answers!).

Get 'em, Mollete!!

Madalot wrote:Saw Mollete's posts over there. Made me smile.

I can't wait to see Daniel's response. Even subscribed to the thread so I'd know when he answers (if he answers!).

Get 'em, Mollete!!

Amen Madalot!

One time on the board, I was indirectly chastised for commenting on possible med side effects to a poster. Essentially, the message from Daniel was the she needed to check with her doctor instead of listening to uninformed internet posters.

Yet, as Mollete wonderfully pointed out, he gives medical advice regularly.

See, that is why I keep pointing out that the issues go far beyond being concerned about liability for permitting people to discuss self treatment. It is all about control in my opinion.

49er

49er wrote:See, that is why I keep pointing out that the issues go far beyond being concerned about liability for permitting people to discuss self treatment. It is all about control in my opinion.

I admit I haven't read a lot over there, actually forgetting I had even registered as a member. It bothers me when Moderators (on any forum) are hypocritical, banning people for doing something that THEY do regularly.

They'd probably figure it out quickly, but it sure would be fun to post about my trials and tribulations with the Trilogy. How fast do you think I'd get banned? LOL

Madalot wrote:

49er wrote:See, that is why I keep pointing out that the issues go far beyond being concerned about liability for permitting people to discuss self treatment. It is all about control in my opinion.

I admit I haven't read a lot over there, actually forgetting I had even registered as a member. It bothers me when Moderators (on any forum) are hypocritical, banning people for doing something that THEY do regularly.

They'd probably figure it out quickly, but it sure would be fun to post about my trials and tribulations with the Trilogy. How fast do you think I'd get banned? LOL

You might set the record:) But all jokes aside, if you hadn't taken control of your situation, you would have been up sh-t's creek big time.

49er

49er wrote:...you would have been up sh-t's creek big time. 49er

Shame on you, 49er. You should know better than to use a word like sh-t on this forum. Avi said that only people who have no intelligence use four letter words. He will now put you on his foe list, I'm sure. Perhaps if you had used the word 'sh-thead' that may have made a difference because sh-thead is not a fore letter word.

P.S. Excuse this Madalot.. just had to.

jedimark wrote:

khauser wrote:One wonders if we DID form a patient-founded group, would CPAPTALK.COM be willing to host it?

I don't know the answer. I might be willing to host a forum though.

I also like the idea ... but we happen to have a great group here, and I am not in a rush to leave it. I pretty much ignore the other organizations & forums. If someone here doesn't know, I think the chance of finding the answer elsewhere online is between slim and none.

On the other thread, my doctor, along with many other's I've read about here, has absolutely OK'd my decision to tweak settings. Granted, he is not a sleep doctor (which in my mind means he doesn't see it as a threat to HIS income), but he works with me on all aspects of my health in a similar way.

I simply won't remain a patient of a doctor that doesn't think that I am a key member of MY health team. If I'm just a 'subject', then we aren't going to be a very productive team.

Forum? We do have a perfectly good one right here that does nicely..

The main advantage I see from something like that is giving us a little muscle when interacting with Sleep Doctors, Manufacturers, DME's, etc. to discourage them from this kind of restrictive behavior, or at the very least show a large dose of collective displeasure.

Heck, simplify it to one large facebook/twitter/whatever else group... click like or whatever to show your behind it. woot.
It's surprising what good can be accomplished by social media.

I don't want to leave CPAPTALK ... not what I had in mind AT ALL.

But I did like the idea of starting such an organization. The ASAA doesn't do much towards patient education, in my opinion. They are almost the opposite ... repressing such information ... because it is a threat in some way I don't quite comprehend.

khauser wrote:

jedimark wrote:

khauser wrote:One wonders if we DID form a patient-founded group, would CPAPTALK(dot)COM be willing to host it?

I don't know the answer. I might be willing to host a forum though.

I also like the idea ... but we happen to have a great group here, and I am not in a rush to leave it. I pretty much ignore the other organizations & forums. If someone here doesn't know, I think the chance of finding the answer elsewhere online is between slim and none.

On the other thread, my doctor, along with many other's I've read about here, has absolutely OK'd my decision to tweak settings. Granted, he is not a sleep doctor (which in my mind means he doesn't see it as a threat to HIS income), but he works with me on all aspects of my health in a similar way.

I simply won't remain a patient of a doctor that doesn't think that I am a key member of MY health team. If I'm just a 'subject', then we aren't going to be a very productive team.

Forum? We do have a perfectly good one right here that does nicely..

The main advantage I see from something like that is giving us a little muscle when interacting with Sleep Doctors, Manufacturers, DME's, etc. to discourage them from this kind of restrictive behavior, or at the very least show a large dose of collective displeasure.

Heck, simplify it to one large facebook/twitter/whatever else group... click like or whatever to show your behind it. woot.
It's surprising what good can be accomplished by social media.

I don't want to leave CPAPTALK ... not what I had in mind AT ALL.

But I did like the idea of starting such an organization. The ASAA doesn't do much towards patient education, in my opinion. They are almost the opposite ... repressing such information ... because it is a threat in some way I don't quite comprehend.

Variations of your thoughts have been discussed and attempted before.
If you go up to the Search line and put in "CUGI", you'll find a couple of links that will take you to past discussions.


Den

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Wow Robysue and Mollete, I can't wait to see the "official response" on the ASAA board on your posts. I enjoyed reading them. 49er, I think its good that you spoke up and got tired of the crap.
Maybe all of your posts will get some people at ASAA to actually think about what they are doing (or not doing).

Sorry to hear, 49er. It was a DM from you just the other day that brought me here...and may have sealed your fate.

oak wrote:Wow Robysue and Mollete, I can't wait to see the "official response" on the ASAA board on your posts. I enjoyed reading them. 49er, I think its good that you spoke up and got tired of the crap.
Maybe all of your posts will get some people at ASAA to actually think about what they are doing (or not doing).

Thanks Oak and I agree, wow RobySue and Mollete. Robysue's points were pretty much what I said in a PM to Vicki that caused me to get banned. She just expressed them alot better than I did.

Daniel's response pretty much says it all and here is my response to him or whomever is reading this thread. Wow, so you're not content to just ban people from the ASAA board, now you have to engage in intimidation tactics to discourage people from speaking out against the practices of ASAA. Sorry, it is not going to work.

49er

PS - Forgot to mention that this thread is 14 pages due to some posts that are OT. Unlike the ASAA forum, remember, we don't condemn folks for OT posts.

Outlier wrote:Sorry to hear, 49er. It was a DM from you just the other day that brought me here...and may have sealed your fate.

Hi Outlier,

Glad you made it here

No, I think it was a number of issues that sealed my fate and the PM to Vicky was the final straw.

Well, you troublemakers finally got that thread LOCKED.


Den

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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.