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.Guest wrote:For the record - I guess the OP has just disappeared after posting this?msla wrote:What are your thoughts on this effort? myapnea org/ I'm not looking to upset anyone, just curious.
myapnea dot org
Re: myapnea dot org
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Re: myapnea dot org
(1) Another ad hominem attackasleep@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.
(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
are you just TRYING to piss people off and make them even more against the asaa?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.
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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Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.
Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.
Re: myapnea dot org
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
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.
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
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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Re: myapnea dot org
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).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.
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Re: myapnea dot org
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
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.
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
Sludge wrote:Great.asleep@thewheel wrote:The forum on MyApnea.Org is for research only.
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
I'd really like to know more about this Open Letter.Sludge wrote: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.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.
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Re: myapnea dot org
this one? http://www.aasmnet.org/JCSM/Articles/020319.pdf
or this one? (not 2006) http://www.talkaboutsleep.com/an-open-l ... -congress/
here's another 2006: http://respiratory-care-sleep-medicine. ... nosis.aspx
Mouthy guy, wasn't he?
or this one? (not 2006) http://www.talkaboutsleep.com/an-open-l ... -congress/
here's another 2006: http://respiratory-care-sleep-medicine. ... nosis.aspx
Mouthy guy, wasn't he?
Get OSCAR
Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.
Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.
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Re: myapnea dot org
Likewise.archangle wrote:I'd really like to know more about this Open Letter.Sludge wrote: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.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.
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How we squander our hours of pain. -- Rilke
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Re: myapnea dot org
Mouthy, yet curiously silent on the subject of patient empowerment and education after diagnosis.palerider wrote:this one? http://www.aasmnet.org/JCSM/Articles/020319.pdf
or this one? (not 2006) http://www.talkaboutsleep.com/an-open-l ... -congress/
here's another 2006: http://respiratory-care-sleep-medicine. ... nosis.aspx
Mouthy guy, wasn't he?
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How we squander our hours of pain. -- Rilke
Re: myapnea dot org
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.archangle wrote: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.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
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