CPAP Users Group International
CPAP Users Group International
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.
Thanks.
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Re: CPAP Users Group International
Google showed this http://bizia.us/cpap-users-group-intern ... y#top_info
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- chunkyfrog
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Re: CPAP Users Group International
----"inactive".
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- Wulfman...
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Re: CPAP Users Group International
Answers: "Yes", "maybe one" and "no".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.
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
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05
Re: CPAP Users Group International
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
"The art of medicine consists in amusing the patient while nature cures the disease." Voltaire
Re: CPAP Users Group International
This site is international...there are posters from many countries.
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- Wulfman...
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Re: CPAP Users Group International
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.
.
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
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05
Re: CPAP Users Group International
Yeah, that was the "very little information" I'd found. I also found this: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.
.
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)
Help find the undiagnosed. Send me a PM if you'd like to help (http://osaaction.org)
- Wulfman...
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Re: CPAP Users Group International
That's the same thread I linked to with "DSM's" post explaining the problems we had approaching the issues. (the beginning)JQLewis wrote:Yeah, that was the "very little information" I'd found. I also found this: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.
.
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.
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
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05
Re: CPAP Users Group International
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.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.
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)
Help find the undiagnosed. Send me a PM if you'd like to help (http://osaaction.org)