myapnea dot org

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

Post by Sludge » Sat Nov 29, 2014 3:40 am

49er wrote:Regarding the ASAA forum...
It seems to me that's nearly a dead board. Activity is like at a crawl.
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kaiasgram
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Re: myapnea dot org

Post by kaiasgram » Sat Nov 29, 2014 3:43 am

Interesting, thanks Sludge.

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kaiasgram
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Re: myapnea dot org

Post by kaiasgram » Sat Nov 29, 2014 3:44 am

Sludge wrote:
49er wrote:Regarding the ASAA forum...
It seems to me that's nearly a dead board. Activity is like at a crawl.
I noticed too. Very slow.

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Sludge
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Re: myapnea dot org

Post by Sludge » Sat Nov 29, 2014 4:03 am

But "IMHO" I don't think that 's the underlying issue. Getting AHI to to <5.0 is not a big deal (I mean, you got your CompSAS and some other stuff, but for the most part, these days a 4.0 - 20.0 machine will work just fine).

I think the real problem is continued symptoms DESPITE acceptable AHI, and all these people here now will still be here because they:
  • Have the wrong diagnosis
  • Have co-morbidity
  • Have the wrong interface (comfort +/- leakage)
  • Have poor sleep hygiene
  • Medication conflicts
  • Have an ineffective medical team
  • More stuff..
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Sludge
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Re: myapnea dot org

Post by Sludge » Sat Nov 29, 2014 4:18 am

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49er
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Re: myapnea dot org

Post by 49er » Sat Nov 29, 2014 5:43 am

Hi Kaiasgram,

I didn't see it. Perhaps I didn't look in the right place? When you get a chance, let me if I missed it so I can vote for your question.

49er
kaiasgram wrote:I tried submitting my research question idea on the myapnea.org website again and this time it went through and got posted. This is the question I posted:
Does educating sleep apnea patients about how to monitor and manage their treatment, including how to use and adjust their PAP machines, affect sleep apnea treatment outcomes (AHI, subjective reporting of symptoms, and compliance rates)?
I know some of us hate the word "compliance" but in the medical research world it's the right word to use.

You would have to register on the myapnea.org website to vote for research questions and I know most don't want to bother. To be honest I don't think much will come from the whole enterprise, but since it didn't cost me anything except a few minutes of my time I decided to go for it.

Also, if you're registered on the ASAA forum and haven't been there for a while, you might want to revisit -- there does seem to be a little bit of forward movement there now. A little. But it's better than no forward movement.

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49er
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Re: myapnea dot org

Post by 49er » Sat Nov 29, 2014 5:59 am

Does educating sleep apnea patients about how to monitor and manage their treatment, including how to use and adjust their PAP machines, affect sleep apnea treatment outcomes (AHI, subjective reporting of symptoms, and compliance rates)?
Noticed that my AHI was higher than normal Thanksgiving night and this morning, after going back to sleep after I had eaten a light snack, it was very high. The issue of food and AHI hadn't been a previous issue that I was aware of but thanks to being able to monitor my data, I see that it is now and have to adjust accordingly.

49er

asleep@thewheel
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Re: myapnea dot org

Post by asleep@thewheel » Sat Nov 29, 2014 7:41 am

Sludge wrote:But "IMHO" I don't think that 's the underlying issue. Getting AHI to to <5.0 is not a big deal (I mean, you got your CompSAS and some other stuff, but for the most part, these days a 4.0 - 20.0 machine will work just fine).

I think the real problem is continued symptoms DESPITE acceptable AHI, and all these people here now will still be here because they:
  • Have the wrong diagnosis
  • Have co-morbidity
  • Have the wrong interface (comfort +/- leakage)
  • Have poor sleep hygiene
  • Medication conflicts
  • Have an ineffective medical team
  • More stuff..
This is exactly what PCORnet and its 29 networks will theoretically once and for all be able to learn from each other. A so called learning healthcare system. Having a computable phenotype for OSA will help us identify so many patients that are already in the medical system being treated for other comorbidities.

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Sludge
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Re: myapnea dot org

Post by Sludge » Sat Nov 29, 2014 8:02 am

asleep@thewheel wrote:
Sludge wrote:But "IMHO" I don't think that 's the underlying issue. Getting AHI to to <5.0 is not a big deal (I mean, you got your CompSAS and some other stuff, but for the most part, these days a 4.0 - 20.0 machine will work just fine).

I think the real problem is continued symptoms DESPITE acceptable AHI, and all these people here now will still be here because they:
  • Have the wrong diagnosis
  • Have co-morbidity
  • Have the wrong interface (comfort +/- leakage)
  • Have poor sleep hygiene
  • Medication conflicts
  • Have an ineffective medical team
  • More stuff..
This is exactly what PCORnet and its 29 networks will theoretically once and for all be able to learn from each other. A so called learning healthcare system. Having a computable phenotype for OSA will help us identify so many patients that are already in the medical system being treated for other comorbidities.
Yeah, well I ain't holding my breath (so to speak) waiting for that to happen.

You guys have been screwing around with this for nearly a year and so far only have a barely-functional website to show for it.

[Insert laundry list of excuses why little has been done here.]
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Sludge
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Re: myapnea dot org

Post by Sludge » Sat Nov 29, 2014 8:11 am

So why not give an update on the progress of the initiative and where that million dollars is going.

How many people you got signed up?

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Sludge
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Re: myapnea dot org

Post by Sludge » Sat Nov 29, 2014 9:29 am

Temper, temper there, Porky!

Fortunately, I happen to have an eidetic memory...
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Sludge
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Re: myapnea dot org

Post by Sludge » Sat Nov 29, 2014 9:33 am

asleep@thewheel wrote:
Sludge wrote:But "IMHO" I don't think that 's the underlying issue. Getting AHI to to <5.0 is not a big deal (I mean, you got your CompSAS and some other stuff, but for the most part, these days a 4.0 - 20.0 machine will work just fine).

I think the real problem is continued symptoms DESPITE acceptable AHI, and all these people here now will still be here because they:
  • Have the wrong diagnosis
  • Have co-morbidity
  • Have the wrong interface (comfort +/- leakage)
  • Have poor sleep hygiene
  • Medication conflicts
  • Have an ineffective medical team
  • More stuff..
This is exactly what PCORnet and its 29 networks will theoretically once and for all be able to learn from each other. A so called learning healthcare system. Having a computable phenotype for OSA will help us identify so many patients that are already in the medical system being treated for other comorbidities.
Yeah, well I ain't holding my breath (so to speak) waiting for that to happen.

You guys have been screwing around with this for nearly a year and so far only have a barely-functional website to show for it.

[Insert laundry list of excuses why little has been done here.]

Didn't miss a letter, did I?
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Sludge
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Re: myapnea dot org

Post by Sludge » Sat Nov 29, 2014 9:41 am

So why not give an update on the progress of the initiative and where that million dollars is going.

How many people you got signed up?

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chunkyfrog
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Re: myapnea dot org

Post by chunkyfrog » Sat Nov 29, 2014 10:29 am

Imagine if this forum had some control over what were to constitute a poll,
or if there were at least some oversight as to construction, relevance, and input time parameters.
--or even intent. (How is cpap "torture")

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kaiasgram
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Re: myapnea dot org

Post by kaiasgram » Sat Nov 29, 2014 1:52 pm

49er wrote:I didn't see it. Perhaps I didn't look in the right place? When you get a chance, let me know if I missed it so I can vote for your question.
It's there in the Research Questions section. Very last question, or if you click "Newest" it will pop up to the top. Looks like you may have found it and voted already, or else someone else did.

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