CPAPtalk.com

jedimark wrote:This is my problem with ASAA: http://sleepapnea.org/about-asaa/positi ... -cpap.html

I find their official position unreasonable and completely ignorant as to modern times.

It seems that this is the key doctrine of how their organisation operates.

They explicitly WANT to keep patients out of the loop.

I guess the question arises, Is there any serious Sleep Apnea organisation that really puts patient education first?
Because I'd like to see the ASAA and the people so staunchly behind it's current form, be forgotten about in history.

Let's say the ASAA truly is the bunch of Megalomaniacs they think they are, and have the power the control the entire SDB population.

With that in mind, and when they go to carve the Sleep Commandments on the Tablets, what can they say? "After you are diagnosed with SDB, sign on to the support forums to get your advice" and hope that Pugsy or Robysue respond instead of that SFB avi?

"IMHO" here's the 2 major problems that need to be dealt with:

• Depending on who you talk to, 50% of diagnosed SDB breathing patients do not use their therapy at all; and
• ~93 percent of women and ~82 percent of men with signs and symptoms of moderate to severe sleep-disordered breathing remain undiagnosed (ATS).

I do not believe they are "unreasonable, completely ignorant as to modern times and /or explicitly WANT to keep patients out of the loop". They are trying to help the best way they know how and have chosen mainstream as their vehicle. Further, keep in mind that TTBOMK, the only guy who gets paid there is Ed, everybody else volunteers their own time, and a lot of "them" are a lot of "us".

mollete wrote:

jedimark wrote:This is my problem with ASAA: http://sleepapnea.org/about-asaa/positi ... -cpap.html

I find their official position unreasonable and completely ignorant as to modern times.

It seems that this is the key doctrine of how their organisation operates.

They explicitly WANT to keep patients out of the loop.

I guess the question arises, Is there any serious Sleep Apnea organisation that really puts patient education first?
Because I'd like to see the ASAA and the people so staunchly behind it's current form, be forgotten about in history.

Let's say the ASAA truly is the bunch of Megalomaniacs they think they are, and have the power the control the entire SDB population.

With that in mind, and when they go to carve the Sleep Commandments on the Tablets, what can they say? "After you are diagnosed with SDB, sign on to the support forums to get your advice" and hope that Pugsy or Robysue respond instead of that SFB avi?

"IMHO" here's the 2 major problems that need to be dealt with:

• Depending on who you talk to, 50% of diagnosed SDB breathing patients do not use their therapy at all; and
• ~93 percent of women and ~82 percent of men with signs and symptoms of moderate to severe sleep-disordered breathing remain undiagnosed (ATS).

I do not believe they are "unreasonable, completely ignorant as to modern times and /or explicitly WANT to keep patients out of the loop". They are trying to help the best way they know how and have chosen mainstream as their vehicle. Further, keep in mind that TTBOMK, the only guy who gets paid there is Ed, everybody else volunteers their own time, and a lot of "them" are a lot of "us".

Not to sound like I am bragging but as an FYI, I volunteered there very briefly. Not once did Ed thank me for being a volunteer. Not exactly the best way to encourage people to volunteer for you.

There was a part time paid assistant. I never saw any other volunteers but they could have been there when I wasn't in the office.

I guess Mollete, I fail to see how Ed is doing it the mainstream way if people are finding their experiences with sleep medicine to be unsatisfactory and that isn't being addressed. But that is just my opinion.

49er

49er wrote:I guess Mollete, I fail to see how Ed is doing it the mainstream way if people are finding their experiences with sleep medicine to be unsatisfactory and that isn't being addressed.

Well, as previously noted, I was, and continue to be livid on how the HST initiative was pushed through before the field was ready for it. Now, with that, competitive bidding and the 47% drop in reimbursement, care for the new SDB patient has gotten significantly worse.

Maybe Ed doesn't thank the volunteers as much (if at all) as he should, but that makes him a bad manager, not necessarily a bad person.

Besides, we don't do this for "thanks", we do this because it's God's Work.

mollete wrote:

49er wrote:I guess Mollete, I fail to see how Ed is doing it the mainstream way if people are finding their experiences with sleep medicine to be unsatisfactory and that isn't being addressed.

Well, as previously noted, I was, and continue to be livid on how the HST initiative was pushed through before the field was ready for it. Now, with that, competitive bidding and the 47% drop in reimbursement, care for the new SDB patient has gotten significantly worse.

Maybe Ed doesn't thank the volunteers as much (if at all) as he should, but that makes him a bad manager, not necessarily a bad person.

Besides, we don't do this for "thanks", we do this because it's God's Work.

Sorry if I gave the impression that I expected to be profusely thanked for volunteering but at least acknowledging that I existed at least one time would have been nice. Actually, it didn't really upset me but it sure was weird as heck.

I agree that Ed is not a bad person. Obviously, the organization wants people to get treatment. But they aren't hearing what patients are saying and that is so frustrating.

49er

mollete wrote:Besides, we don't do this for "thanks", we do this because it's God's Work.

Really? I'm serious here: Is that your reason for doing what you do?

As an aside, if questioning "authority" results in being banned, I won't last long there. Isn't getting a second opinion questioning "authority"? Isn't wanting to read the research yourself questioning "authority"? And those are just the more "benign" ways my proclivity toward questioning authority manifests.

WB, Linda!

Long time!

My impressions of the ASAA's Mr. G. from my few brief interactions with him is that he is a nice guy, a smart guy, a guy with the right set of skills for the job, and a guy who truly believes in what he does--although like anyone else in any PR-related position, I'm sure he often finds himself publicly defending some positions he does not personally hold to the same degree that the manufacturers do.

I am glad the ASAA exists. If it didn't, it would have to be invented. It just plain sounds better in certain publications to read the words "according to the ASAA" instead of reading "according to ResMed." Useful tool.

I see no reason for that site to try to become cpaptalk. That would be as silly as cpaptalk trying to become that site. Each has a work to do. And we have more in common than we have differences, all things considered. There are even occasions when some come here and are uncomfortable with what goes on, and those people can be told about the other site where they may be more comfortable. That's a good thing. Some people are more comfortable in a buttoned-down uptown bar where everyone wears a tie, other people like the free-for-all of Jeremy's Ale House, where the only ties are the ones that hang from the rafters.

Yes, it is silly for them to act like docs and DMEs are all doing a fine job out there, but when you are, as Dave says, coming at it from the mainstream position, you have no choice but to play pretend or to at least give the concept lip service.

If yer gonna use PMs over there to send people here, though, please do so quietly under the radar. Loose lips sink CPAP. No one but the NSA needs to know what you do in PMs over there. IMO. Just sayin'.

jedimark wrote:Why don't we start one up..

It could be a Secret society with a secret handshake and everything..

Plus you have to enter the RX setup menu of a CPAP machine to become a member.

Kidding aside, the idea of a patient-founded organization is an appealing one.

kaiasgram wrote:

jedimark wrote:Why don't we start one up..

It could be a Secret society with a secret handshake and everything..

Plus you have to enter the RX setup menu of a CPAP machine to become a member.

Kidding aside, the idea of a patient-founded organization is an appealing one.

The Narcolepsy Network is patient founded right? If it isn't that one, there is some narcolepsy organization that is.

Agree Kaisgram that it is very appealing.

Is AWAKE patient founded?

Taringa542 wrote:I just posted this on the other forum:

Re: SleepyHead Software

Postby Taringa542 » Tue Sep 17, 2013 7:26 pm

Daniel wrote:

gtsfze wrote:Dear Mark,
So nice that you are helping the community and also sad that you are suffering with the same problem. Anyhow, may your tribe increase. resmed is charging over 115$ for the same software.
Ok a clarification, does your software work with the Resmed Elite II S8 version For mac or windows. Kindly clarify.

Originally posted 'April 2012'

'Jedimark' is not a member of this forum.
He was banned some time back for agressive/unacceptable comments directed at the ASAA, owners of the forum.

Daniel.

You guys really need to harden up, you should know that people who are as sleep deprived as Jedimark, are going to come across as agressive, how about cutting him some slack? He has done more for the sleep Apnea community than anyone on this forum

I guess I will be banned as well, because I've had the audacity to disagree with the faceless men & women on this forum that call themselves moderators

I thought about posting to their forum yesterday but wanted to think about it for a bit first. I decided on this and just posted as a new topic. It may be gone and I may be banned within the next 5 minutes and I'll accept that.

I wanted to make my message very simple and not inflammatory. I understand they can do things the way they feel is best. It's their forum.

This is what I posted:

Subject: Sleep Medicine doctor ahead of his time

Postby kaiasgram » Tue Sep 17, 2013 9:54 am
I've been on therapy for 15 months now. Earlier this year I was seeing my sleep medicine doctor for help with improving my therapy. The outcome was a week-long at home trial on bilevel, and then the doctor wrote a new prescription for me so I could switch from APAP to a bilevel machine (ResMed S9 VPAP Auto). This is the text of the email he sent me to let me know he was faxing my prescription to the DME. I've bolded the sentence I want the ASAA to see.

Received: 1/21/2013 5:13 PM PST
Done.
I have the [prescription] form. We will fax it tomorrow morning.
I prefer Respironics or ResMed machines. With a heated humidifier.
I assume you have the tubing.
Minimal pressure of 5 maximal pressure of 11. You could adjust the pressure later on.
Good luck

This doctor is the head of Sleep Medicine at one of the northern California sites of a large national healthcare foundation.

SleepingUgly wrote:Is AWAKE patient founded?

It doesn't seem like it was but perhaps I am missing something:

http://www.sleepapnea.org/support/here- ... a.k.e.html

49er

kaiasgram wrote:

Taringa542 wrote:I just posted this on the other forum:

Re: SleepyHead Software

Postby Taringa542 » Tue Sep 17, 2013 7:26 pm

Daniel wrote:

gtsfze wrote:Dear Mark,
So nice that you are helping the community and also sad that you are suffering with the same problem. Anyhow, may your tribe increase. resmed is charging over 115$ for the same software.
Ok a clarification, does your software work with the Resmed Elite II S8 version For mac or windows. Kindly clarify.

Originally posted 'April 2012'

'Jedimark' is not a member of this forum.
He was banned some time back for agressive/unacceptable comments directed at the ASAA, owners of the forum.

Daniel.

You guys really need to harden up, you should know that people who are as sleep deprived as Jedimark, are going to come across as agressive, how about cutting him some slack? He has done more for the sleep Apnea community than anyone on this forum

I guess I will be banned as well, because I've had the audacity to disagree with the faceless men & women on this forum that call themselves moderators

I thought about posting to their forum yesterday but wanted to think about it for a bit first. I decided on this and just posted as a new topic. It may be gone and I may be banned within the next 5 minutes and I'll accept that.

I wanted to make my message very simple and not inflammatory. I understand they can do things the way they feel is best. It's their forum.

This is what I posted:

Subject: Sleep Medicine doctor ahead of his time

Postby kaiasgram » Tue Sep 17, 2013 9:54 am
I've been on therapy for 15 months now. Earlier this year I was seeing my sleep medicine doctor for help with improving my therapy. The outcome was a week-long at home trial on bilevel, and then the doctor wrote a new prescription for me so I could switch from APAP to a bilevel machine (ResMed S9 VPAP Auto). This is the text of the email he sent me to let me know he was faxing my prescription to the DME. I've bolded the sentence I want the ASAA to see.

Received: 1/21/2013 5:13 PM PST
Done.
I have the [prescription] form. We will fax it tomorrow morning.
I prefer Respironics or ResMed machines. With a heated humidifier.
I assume you have the tubing.
Minimal pressure of 5 maximal pressure of 11. You could adjust the pressure later on.
Good luck

This doctor is the head of Sleep Medicine at one of the northern California sites of a large national healthcare foundation.

Read Daniel's response.

49er

49er wrote:

SleepingUgly wrote:Is AWAKE patient founded?

It doesn't seem like it was but perhaps I am missing something:

http://www.sleepapnea.org/support/here- ... a.k.e.html

49er

AWAKE groups pay dues to ASAA
http://www.sleepapnea.org/support/here- ... -area.html

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.