myapnea dot org

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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49er
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Re: myapnea dot org

Post by 49er » Sun Nov 23, 2014 2:46 pm

Drowsy Dancer wrote:
asleep@thewheel wrote:I am a patient first and foremost. I am not an attorney therefore I am not qualified to recite code and law nor would I even know where to look. My comments were taken out of context. I was just trying to express what the sleep doctors POV is and how what they perceive to be right or wrong.
In other words, you admit that you are unable to back up your assertion that is illegal.

The "sleep doctors" you cite are also not attorneys and also not "qualified to recite code and law." So why do you believe them and parrot their assertion? Why do you think they would know where to look? Having an M.D. does not, contrary to popular belief among physicians, make one omniscient.

I don't believe I took your remarks out of context at all.

Hugs and kisses,

DD
Attorney at Law
Definitely not taken out of context
changing pressure is technically considered illegal since under current law it requires a physicians oversight.

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Re: myapnea dot org

Post by palerider » Sun Nov 23, 2014 3:02 pm

49er wrote:Definitely not taken out of context
changing pressure is technically considered illegal since under current law it requires a physicians oversight.
yeah, until they quit talking like that, it's going to be really hard to listen to 'em.

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Re: myapnea dot org

Post by kaiasgram » Sun Nov 23, 2014 3:43 pm

Adam,

I appreciate that you've stayed engaged in this discussion as long as you have, but you seem to be sidestepping around an important concern being raised here by the cpaptalk community about the myapnea.org project. The concern is about the ASAA's longstanding position on patient self-management and whether the myapnea.org project holds any real promise for progress on that front.

According to Ed Grandi's announcement on the ASAA forum, myapnea.org is an ASAA project funded by a grant from PCORI:
A team led by the American Sleep Apnea Association has been approved for a funding
award by the Patient-Centered Outcomes Research Institute (PCORI) to develop and
expand a health data network that will be part of PCORnet: the National
Patient-Centered National Clinical Research Network.
What many of us are trying to ascertain is how the ASAA can on the one hand be claiming to promote patient-powered research and meaningful change with the myapnea.org project while at the same time it is opposed to and actively blocks dialogue about the need for patient education and empowerment in the management -- including and especially self-monitoring and self-management -- of sleep apnea. It is a glaring contradiction.

About a year ago I posted a message on the ASAA forum about how my sleep doctor at the time had suggested that I could make adjustments to my pressure as need be. In my post I did not discuss how to make adjustments or even suggest that anyone else make adjustments. A number of others started to join that discussion. It was exactly the type of dialogue that if allowed to flourish could, over time, become a catalyst for new directions in "patient-powered" research and meaningful change. After all, the ASAA is the premiere sleep apnea association. But within one day Daniel and Linda shut that thread down, calling it a "diatribe" and protesting that "it does nothing to help." This is the thread: http://www.apneasupport.org/sleep-medic ... 32714.html Linda locked the thread before I could even respond to Daniel's question about why I wanted the ASAA to see my message.

This is not about you personally, it is about the organization you represent. "Patient-centered" and "patient-powered" are troubling claims coming from the very organization that will not tolerate hearing patients' voices about what they really need in order to effectively manage this serious medical condition. There is a basis for the cynicism you're encountering here (though there is really no basis for the snarkiness toward you as an individual). I don't think anyone here would deny that the ASAA provides needed and valuable services and resources. But the stifling of patient dialogue about learning how to responsibly manage one's PAP therapy (just as diabetes patients learn to responsibly manage their treatment on an ongoing basis) is not only frustrating but harmful, as so many patients left to the mercy of the current healthcare system and apathetic providers simply drop out of treatment.

So does the myapnea.org project really represent a fundamental change in the openness and interest of the ASAA in listening to what patients are asking for? If someone starts a discussion on the myapnea.org forum about the merits and importance of patient self-management -- including education about appropriate "dose" (pressure) adjustments -- will that discussion be censored as it has been on the ASAA patient forum?

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Re: myapnea dot org

Post by chunkyfrog » Sun Nov 23, 2014 3:50 pm

Very informative thread. I wonder if there is any chance the honest discussion here would be allowed any place else.

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Re: myapnea dot org

Post by asleep@thewheel » Sun Nov 23, 2014 3:51 pm

Trying to enjoy my sunday afternoon watching football in the florida sun. I wish I could be as perfect and as knowledgeable as most of you. Giving out medical advice is not in our periphery, however peer to peer mentoring is. As far as I know if you practice medicine without a medical license or proper certification and training, this is considered to be against against the law. Save your breath from asking me to sight it. There are a million and one reasons for state licensing boards.

That is why as a true 501c3 nonforprofit we can not officially allow people to offer medical advice on our forums. What is so hard to understand about that? Does that make it right ? No.That is what this forum is for.

Does anyone here run their own company on this forum? Hypothetically somebody on here one day might get the idea to go and sue the proprietors of this forum for getting what they think is harmful information that they chose to act on. Risk adverse. We are trying to move the dial from within the system. Good luck to you all and I wish you a good night of sleep without leaks.

Ed Grandi is now the former executive director of the ASAA.

Linda and Daniel are no longer our moderators. Yes we are open to have this exact conversation about patient self management. It has taken the diabetes community a long time to get diabetes education into their process.

I by no means take any of the vitriol personal. We need you all at the table to move the dial. That is why I am here. MyApnea.Org is far from perfect. One day it has the potential to make major strides for the betterment of all of our lives and this of future generations if we participate. Not showing up to vote does no one any good.

The forum on MyApnea.Org is for research only. There is place on our sight to propose and vote on your own research questions and or theories. This is the first time that patients, clinicians, and researchers are all sitting at the table together. PCORI is a work in progress. Changing minds and hearts does not happen overnight, but it does happen with a ground swell. We are inclusive not exclusive. Come one Come All.

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Re: myapnea dot org

Post by Guest » Sun Nov 23, 2014 4:15 pm

asleep@thewheel wrote:Giving out medical advice is not in our periphery,
That means no.
asleep@thewheel wrote:As far as I know if you practice medicine without a medical license or proper certification and training, this is considered to be against against the law. Save your breath from asking me to sight it
This means H*ll NO.
asleep@thewheel wrote:This is the first time that patients, clinicians, and researchers are all sitting at the table together.
Perhaps you will explain why not many patients are at the table - perhaps you won't.

I see no reason to re-invent the wheel, we have it right here.

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Drowsy Dancer
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Re: myapnea dot org

Post by Drowsy Dancer » Sun Nov 23, 2014 4:17 pm

asleep@thewheel wrote:As far as I know if you practice medicine without a medical license or proper certification and training, this is considered to be against against the law.
You won't get an argument out of me regarding this statement, but if you're trying to claim that changing your own settings is "practic[ing] medicine without a medical license," that won't fly.

If you're trying to claim that telling people how the settings on an xPAP machine can be changed constitutes the "practice of medicine" at all, that also won't fly.
asleep@thewheel wrote:I wish I could be as perfect and as knowledgeable as most of you.
Also, the touch of ad hominem attack won't fly.

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Re: myapnea dot org

Post by palerider » Sun Nov 23, 2014 4:19 pm

asleep@thewheel wrote: I wish I could be as perfect and as knowledgeable as most of you.
if you're going to lob a hornets nest into a group of folks, you really should be prepared for some criticism, and not have a thin skin, and start being snarky in return.

it doesn't reflect well on the organization you're claiming wants to reform.

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Re: myapnea dot org

Post by Sludge » Sun Nov 23, 2014 4:21 pm

asleep@thewheel wrote:Save your breath from asking me to sight it.
"Cite"
asleep@thewheel wrote:There is place on our sight to propose and vote on your own research questions and or theories.
"Site."
asleep@thewheel wrote:I wish I could be as perfect and as knowledgeable as most of you.
Yeah, well...
asleep@thewheel wrote:I by no means take any of the vitriol personal.
No, not much.
You Kids Have Fun!!

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Sludge
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Re: myapnea dot org

Post by Sludge » Sun Nov 23, 2014 4:29 pm

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%")?
You Kids Have Fun!!

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49er
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Re: myapnea dot org

Post by 49er » Sun Nov 23, 2014 4:33 pm

Adam,

Your response to this exert that Kaisgram posted in her previous post?
So does the myapnea.org project really represent a fundamental change in the openness and interest of the ASAA in listening to what patients are asking for? If someone starts a discussion on the myapnea.org forum about the merits and importance of patient self-management -- including education about appropriate "dose" (pressure) adjustments -- will that discussion be censored as it has been on the ASAA patient forum?
49er

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Re: myapnea dot org

Post by asleep@thewheel » Sun Nov 23, 2014 4:40 pm

The reason to got to myapnea.org is to participate in research with every medical stakeholder in the country. Unfortunately that is not going to happen on this site. If you want change you have to play the game. Fill out the surveys. They will will be part of the national common data model. Our leadership is led by a majority of patients. Some happen to be doctors who also have OSA. In order to get properly funded pragmatic trials initiated we need your votes so the funders will fund the research that we all want to see with NIH, CDC, HHS, PCORI, CMS, robert wood johnson, clinton foundation, etc.
I am doing the best I can. I didn't set out in life to be a patient advocate, I earned it the hard way. visit our Facebook site and see for yourself.

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Julie
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Re: myapnea dot org

Post by Julie » Sun Nov 23, 2014 4:55 pm

"One day it has the potential to make major strides for the betterment of all of our lives and this of future generations if we participate. Not showing up to vote does no one any good."

I think the tone of that says a lot. It is the pluperfect expression of a dedicated politician, not a caregiver. Trying to use rational arguments with people who have preset agendas is pointless as they are self serving and are not interested in our point of view. What they say is just double talk and we might as well just stop trying to get through. What a waste of a potentially useful dialogue.

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Re: myapnea dot org

Post by palerider » Sun Nov 23, 2014 5:00 pm

Sludge wrote:
asleep@thewheel wrote:Save your breath from asking me to sight it.
"Cite"
asleep@thewheel wrote:There is place on our sight to propose and vote on your own research questions and or theories.
"Site."
asleep@thewheel wrote:I wish I could be as perfect and as knowledgeable as most of you.
Yeah, well...
asleep@thewheel wrote:I by no means take any of the vitriol personal.
No, not much.
a@tw said earlier that he uses 'dragon' presumably dragon dictate... must be too asleep to go back and try to correct anything that's misspelled, mispunctuated, or poorly presented.

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49er
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Re: myapnea dot org

Post by 49er » Sun Nov 23, 2014 5:07 pm

Julie wrote:"One day it has the potential to make major strides for the betterment of all of our lives and this of future generations if we participate. Not showing up to vote does no one any good."

I think the tone of that says a lot. It is the pluperfect expression of a dedicated politician, not a caregiver. Trying to use rational arguments with people who have preset agendas is pointless as they are self serving and are not interested in our point of view. What they say is just double talk and we might as well just stop trying to get through. What a waste of a potentially useful dialogue.
Sadly, I agree Julie.