CPAP Users Group International

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
User avatar
JQLewis
Posts: 180
Joined: Fri Apr 11, 2014 10:05 am
Location: New York City

CPAP Users Group International

Post by JQLewis » Sat Sep 20, 2014 4:56 pm

I was told about an effort from about 6 years ago to form a patient activist group called CPAP Users Group International. I've search here and found very little information about it. Does anyone know who was involved with this effort? Are any of those people still around? Does anyone know of any other efforts along those same lines?

Thanks.

_________________
Mask: AirFit™ N10 Nasal CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Sleepyhead, Sleep Studies done 3/14, AHI 85.6
Sleep Study-Titration Study
Help find the undiagnosed. Send me a PM if you'd like to help (http://osaaction.org)

User avatar
squid13
Posts: 2299
Joined: Fri Jul 15, 2011 3:47 pm
Location: Pensacola, FL

Re: CPAP Users Group International

Post by squid13 » Sat Sep 20, 2014 5:15 pm


_________________
Machine: ResMed AirCurve 10 ASV Machine with Heated Humidifier
Mask: Evora Full Face Mask - Fitpack
Additional Comments: AirCurve 10 ASV, Oscar V1.0.1-r-1
US Navy Retired 1973,AirCurve 10 ASV, Mode: ASV Auto, Min EPAP: 7.2, Max EPAP: 15.0, Min PS:4.0, Max PS: 15.0, Mask ResMed Airtouch F20, Backup: (2) AirCurve 10 ASV

User avatar
chunkyfrog
Posts: 34378
Joined: Mon Jul 12, 2010 5:10 pm
Location: Nebraska--I am sworn to keep the secret of this paradise.

Re: CPAP Users Group International

Post by chunkyfrog » Sat Sep 20, 2014 5:26 pm

----"inactive".

_________________
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
Additional Comments: Airsense 10 Autoset for Her

User avatar
Wulfman...
Posts: 6688
Joined: Mon Sep 01, 2014 6:41 pm
Location: Nearest fishing spot

Re: CPAP Users Group International

Post by Wulfman... » Sat Sep 20, 2014 5:57 pm

JQLewis wrote:I was told about an effort from about 6 years ago to form a patient activist group called CPAP Users Group International. I've search here and found very little information about it. Does anyone know who was involved with this effort? Are any of those people still around? Does anyone know of any other efforts along those same lines?

Thanks.
Answers: "Yes", "maybe one" and "no".


Den

.
(5) REMstar Autos w/C-Flex & (6) REMstar Pro 2 CPAPs w/C-Flex - Pressure Setting = 14 cm.
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05

User avatar
Goofproof
Posts: 16087
Joined: Mon Dec 05, 2005 3:16 pm
Location: Central Indiana, USA

Re: CPAP Users Group International

Post by Goofproof » Sat Sep 20, 2014 9:29 pm

Was that a Ralph Nader cause? Jim
Use data to optimize your xPAP treatment!

"The art of medicine consists in amusing the patient while nature cures the disease." Voltaire

User avatar
LSAT
Posts: 13229
Joined: Sun Nov 16, 2008 10:11 am
Location: SE Wisconsin

Re: CPAP Users Group International

Post by LSAT » Sat Sep 20, 2014 10:30 pm

This site is international...there are posters from many countries.

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: Fisher & Paykel Vitera Full Face Mask with Headgear (S, M, or L Cushion)
Additional Comments: Back up is S9 Autoset...... Buckwheat hull pillow

User avatar
Wulfman...
Posts: 6688
Joined: Mon Sep 01, 2014 6:41 pm
Location: Nearest fishing spot

Re: CPAP Users Group International

Post by Wulfman... » Sat Sep 20, 2014 10:34 pm

This post pretty much sums up the issues we were facing of getting and keeping it going.

viewtopic.php?f=1&t=41013&p=360037&hilit=CUGI#p360037


Den

Edit: Actually, you need to read the whole thread to put everything into context.

.
(5) REMstar Autos w/C-Flex & (6) REMstar Pro 2 CPAPs w/C-Flex - Pressure Setting = 14 cm.
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05

User avatar
JQLewis
Posts: 180
Joined: Fri Apr 11, 2014 10:05 am
Location: New York City

Re: CPAP Users Group International

Post by JQLewis » Sun Sep 21, 2014 8:27 am

Wulfman... wrote:This post pretty much sums up the issues we were facing of getting and keeping it going.

viewtopic.php?f=1&t=41013&p=360037&hilit=CUGI#p360037


Den

Edit: Actually, you need to read the whole thread to put everything into context.

.
Yeah, that was the "very little information" I'd found. I also found this:

viewtopic.php?f=1&t=41013&p=360037&hilit=CUGI#p359722

Which was also from quite a while ago. I have about ten years experience in the direct mail and charity consultation biz, so I have a pretty good idea of the difficulties involved in getting these kinds of organizations off the ground. Still, I'm surprised it's been so long between efforts. The need seems to be just a strong now as it was back then. Perhaps OSA presents greater challenges than some other causes?

The ASAA, whether they can be called successful or not, are not the kind of organization I'm thinking of. They're basically a Washington lobby group, and what real benefit can be gained from Washington? Forgetting gridlock, Washington is in the pockets of the specific interests that are most in need of reform. As far as this site goes, it's probably the best patient resource there is, but it also has nothing to do with the kind of effort I'm thinking about. This site makes no outreach efforts, and makes no attempt to engage with the people responsible for the self-defeating practices which people here complain about.

_________________
Mask: AirFit™ N10 Nasal CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Sleepyhead, Sleep Studies done 3/14, AHI 85.6
Sleep Study-Titration Study
Help find the undiagnosed. Send me a PM if you'd like to help (http://osaaction.org)

User avatar
Wulfman...
Posts: 6688
Joined: Mon Sep 01, 2014 6:41 pm
Location: Nearest fishing spot

Re: CPAP Users Group International

Post by Wulfman... » Sun Sep 21, 2014 12:08 pm

JQLewis wrote:
Wulfman... wrote:This post pretty much sums up the issues we were facing of getting and keeping it going.

viewtopic.php?f=1&t=41013&p=360037&hilit=CUGI#p360037


Den

Edit: Actually, you need to read the whole thread to put everything into context.

.
Yeah, that was the "very little information" I'd found. I also found this:

viewtopic.php?f=1&t=41013&p=360037&hilit=CUGI#p359722

Which was also from quite a while ago. I have about ten years experience in the direct mail and charity consultation biz, so I have a pretty good idea of the difficulties involved in getting these kinds of organizations off the ground. Still, I'm surprised it's been so long between efforts. The need seems to be just a strong now as it was back then. Perhaps OSA presents greater challenges than some other causes?

The ASAA, whether they can be called successful or not, are not the kind of organization I'm thinking of. They're basically a Washington lobby group, and what real benefit can be gained from Washington? Forgetting gridlock, Washington is in the pockets of the specific interests that are most in need of reform. As far as this site goes, it's probably the best patient resource there is, but it also has nothing to do with the kind of effort I'm thinking about. This site makes no outreach efforts, and makes no attempt to engage with the people responsible for the self-defeating practices which people here complain about.
That's the same thread I linked to with "DSM's" post explaining the problems we had approaching the issues. (the beginning)

One of the biggest problem remains......you can't get the important information to the people that need it BEFORE they get sucked into the "system"......which has it's own profit-motivated agendas. All you have to do is read through these pages of how many users are handed "bricks" and told things about this therapy and the insurance parts of it that aren't true.
Over the years, some of the things I've seen in the past have gotten a bit better.......SOME DMEs are actually handing out (data-capable) APAPs now without the patient having to fight for them (however those situations are still few and far between). But, not enough of the users "do their homework" before they find this forum. They don't know how to deal with the "system". Many of them quit before they find the forum or are so angry by the time they DO find the forum that they're hostile to suggestions and recommendations. How many times have you read the words "HATE" or "QUIT"? They have to be computer savvy and actually know what they're looking for to find the answers to questions they haven't thought of yet.

I've long said that most people do more research on their other electronic "toys" they have (think cell phones or other hand-held communication/computing devices) than they do for something they're going to sleep with every night and that will increase their longevity and provide better health.


Den

.
(5) REMstar Autos w/C-Flex & (6) REMstar Pro 2 CPAPs w/C-Flex - Pressure Setting = 14 cm.
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05

User avatar
JQLewis
Posts: 180
Joined: Fri Apr 11, 2014 10:05 am
Location: New York City

Re: CPAP Users Group International

Post by JQLewis » Sun Sep 21, 2014 5:30 pm

Wulfman... wrote:One of the biggest problem remains......you can't get the important information to the people that need it BEFORE they get sucked into the "system"......which has it's own profit-motivated agendas. All you have to do is read through these pages of how many users are handed "bricks" and told things about this therapy and the insurance parts of it that aren't true.
Over the years, some of the things I've seen in the past have gotten a bit better.......SOME DMEs are actually handing out (data-capable) APAPs now without the patient having to fight for them (however those situations are still few and far between). But, not enough of the users "do their homework" before they find this forum. They don't know how to deal with the "system". Many of them quit before they find the forum or are so angry by the time they DO find the forum that they're hostile to suggestions and recommendations. How many times have you read the words "HATE" or "QUIT"? They have to be computer savvy and actually know what they're looking for to find the answers to questions they haven't thought of yet.

I've long said that most people do more research on their other electronic "toys" they have (think cell phones or other hand-held communication/computing devices) than they do for something they're going to sleep with every night and that will increase their longevity and provide better health.
Well, speaking for myself, I did the only research I thought was necessary. I checked that the doctor I was seeing was board certified in his specialty, and a member in good standing of the AASM. It's a damn shame that this is not sufficient. If you hire a plumber, and the plumber says one type of pipe is preferable to another, should you have to become as expert as the plumber, so you can second-guess him? All that should be necessary is to check that he's got a good reputation. When you buy a cell phone, you're on your own. When you hire expert help, you should be able to reply on the advice they give you. Unfortunately, with sleep medicine, this isn't true.

As far as the problem of reaching people before they begin treatment, I agree that this is the best way to help them. I've been giving this some thought, and I think the best approach is to base any such organization on outreach to the undiagnosed. There are several reasons why this approach could be beneficial. Stanford University has an outreach program relating to sleep disorders. I contacted them a couple of days ago, to ask what resources they have and what help/advice they might be able to offer, but I haven't received a reply as yet. There seems to be a growing consensus that this kind of effort is vital, but there doesn't seem to be much action being taken so far. The CDC and NIH are both trying to raise awareness of the prevalence of undiagnosed OSA, but what plans they might have to address it, I have no idea. The ASAA says that outreach is their goal, but again, what have they done?

_________________
Mask: AirFit™ N10 Nasal CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Sleepyhead, Sleep Studies done 3/14, AHI 85.6
Sleep Study-Titration Study
Help find the undiagnosed. Send me a PM if you'd like to help (http://osaaction.org)