myapnea dot org

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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msla
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Re: myapnea dot org

Post by msla » Sun Nov 23, 2014 6:06 pm

Guest wrote:
msla wrote:What are your thoughts on this effort? myapnea org/ I'm not looking to upset anyone, just curious.
For the record - I guess the OP has just disappeared after posting this?
I have not disappeared. I see where it has become rather active in the last 2 days. I will, take some time to read the posts. Honestly, I thought it was a dead thread several weeks ago.

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Drowsy Dancer
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Re: myapnea dot org

Post by Drowsy Dancer » Sun Nov 23, 2014 6:06 pm

asleep@thewheel wrote:The fact that you all are so negative is a clear indication to me that maybe your sleep is still compromised to some degree which is unfortunate.
(1) Another ad hominem attack
(2) If you're trying to diagnose us, isn't that practicing medicine without a license? I'm told that's illegal.

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Re: myapnea dot org

Post by palerider » Sun Nov 23, 2014 6:12 pm

asleep@thewheel wrote:The fact that you all are so negative is a clear indication to me that maybe your sleep is still compromised to some degree which is unfortunate.
are you just TRYING to piss people off and make them even more against the asaa?

what's *clear* is that the asaa and it's forum has worked very hard in the past to alienate people that try to help themselves and others.

your lashing out here ain't helping.

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Re: myapnea dot org

Post by big_dave » Sun Nov 23, 2014 6:44 pm

It's another phony effort to create the illusion of patient advocacy while advancing the interests of the health care industry. It's no different than the dumbed-down software that ResMed and PR have tried to pawn off on us.

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Re: myapnea dot org

Post by kaiasgram » Sun Nov 23, 2014 7:48 pm

I decided to investigate. I signed up on myapnea.org and composed a research question about the role of patient self-management in sleep apnea therapy outcomes. Because I have a professional background in behavioral health research I put some thought into my description of why the question is an important one (this "description" is part of the research question submission process). But when I tried to submit the question I got a "We're sorry, but something went wrong" error message. I've tried a number of times now and keep getting the same error message.

Theoretically the way it works -- there are a number of proposed research questions already on the site. (I'm guessing that all or most of the questions were written by project staff). When you sign up you can vote for one or more of the existing questions as well as submit your own research question. From what I can see so far, you can cast up to five votes per day. I was able to vote but I was not able to submit my research question.

I submitted a help ticket about the error message and I'll let y'all know if it gets resolved and if my question gets posted. If it does maybe some of my forum buddies would sign up and vote for me -- er, I mean, for my question.

The forum there is pretty much a ghost town and I wonder if the whole project is not doing well or if it's just in the early stages of launch.

big_dave -- I don't think the project is phony, but it does come across as fluffy.

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Re: myapnea dot org

Post by Drowsy Dancer » Sun Nov 23, 2014 8:39 pm

kaiasgram, does the self-selection of participants in the research skew the research? I'm concerned that because the population is self-selected, that might affect the usefulness of any research.

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kaiasgram
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Re: myapnea dot org

Post by kaiasgram » Sun Nov 23, 2014 8:53 pm

Drowsy Dancer wrote:kaiasgram, does the self-selection of participants in the research skew the research? I'm concerned that because the population is self-selected, that might affect the usefulness of any research.
Sure, self-selection always has the potential to bias the results of a research project. That doesn't necessarily mean the research is bad, it just needs to be acknowledged as a potential influence on the results in a study. I haven't tried to become a participant in their patient surveys so I don't know if there are any selection criteria for being a participant. I'll take a look at the informed consent documents and see if I can find out more about the participation criteria (if there are any).

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msla
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Re: myapnea dot org

Post by msla » Sun Nov 23, 2014 9:46 pm

I appreciate Adam's responses. I have to say I fall into the "fool me once, shame on you; fool me twice, shame on me" camp. Thank you Kaiasgram for being our "test dummy" ( I mean that in the kindest way and am not implying anything derogatory ) and keeping us informed. I await more information as to what is inside of their registration barrier.

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Re: myapnea dot org

Post by chunkyfrog » Sun Nov 23, 2014 11:01 pm

Any research with human subjects must have willing volunteers, (with some shameful historical exceptions.)
Only animal studies are unaffected by the willingness of the subjects.
But this is also true of diagnosis and treatment.
If I choose not to play that game, maybe I've already found the game that's using an honest deck.

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Re: myapnea dot org

Post by zoocrewphoto » Mon Nov 24, 2014 8:44 pm

Sludge wrote:
asleep@thewheel wrote:The forum on MyApnea.Org is for research only.
Great.

What exactly are you trying to research (and don't tell me "Gee, we're going to look at why compliance is only 50%")?

He's writing a book.

According to: http://www.sleepapnea.org/about-asaa/wh ... board.html

"He is currently writing a memoir, Asleep at the Wheel: Living with Sleep Apnea, in hopes of educating the public about apnea and its effects on both adults and children."

Considering how many people got banned for discussing actual ways to improve treatment, I see no reason to post there. That forum does not do much to help people get treatment and *succeed* with treatment.

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Re: myapnea dot org

Post by archangle » Mon Nov 24, 2014 11:27 pm

Sludge wrote:
asleep@thewheel wrote:I wholeheartedly agree no one should be sent out the door with an APAP set between 4-20, that is just ludicrous and is a recipe for failure.
Yeah well the Open Letter that you MFs pushed through in 2006 created this whole mess. There's no way you're gonna fix it now.
I'd really like to know more about this Open Letter.

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Re: myapnea dot org

Post by palerider » Mon Nov 24, 2014 11:34 pm


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Re: myapnea dot org

Post by Drowsy Dancer » Tue Nov 25, 2014 12:24 am

archangle wrote:
Sludge wrote:
asleep@thewheel wrote:I wholeheartedly agree no one should be sent out the door with an APAP set between 4-20, that is just ludicrous and is a recipe for failure.
Yeah well the Open Letter that you MFs pushed through in 2006 created this whole mess. There's no way you're gonna fix it now.
I'd really like to know more about this Open Letter.
Likewise.

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Re: myapnea dot org

Post by Drowsy Dancer » Tue Nov 25, 2014 12:25 am

Mouthy, yet curiously silent on the subject of patient empowerment and education after diagnosis.

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Re: myapnea dot org

Post by Johnnyb01 » Tue Nov 25, 2014 2:07 am

archangle wrote:
Johnnyb01 wrote: the DME apparently has a policy of locking the machines, which basicly lets you see no sleep data on the machine itself and only allows you to turn the machine on/off, turn the ramp on/off and adjust the temp (humidity) that lasted about 5 minutes from the time I got home
Far be it from me to defend DME's, but ResMed delivers sleep quality, EPR, and a few other things to the most patient unfriendly "off" and "locked" settings when they come from the factory.
sleep quality was set to "usage" which only shows hours used in the current day, EPR is locked off unless they have it set to patient when the machine is set in "S9 Essentials" mode. Literally the only thing it lets you change is the Ramp and the temp when set up like this. Even the little info and setup buttons are disabled when set in this mode.

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