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Biguglygremlin +0 points · almost 2 years ago Sleep Enthusiast

There was some research conducted at the Mayo Clinic into another form of sleep disorder which was noteworthy from the angle that they prepared questionnaires for both the patient and an informant (partner) then after they evaluated the credibility of both sources they essentially tossed out the patient responses and only used the informant responses.

Apnea is a different disorder and those patients were in pretty bad shape but I wonder if some of the same concepts might apply to Apnea research.

Validation of the Mayo Sleep Questionnaire

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bonjour +0 points · almost 2 years ago Sleep Commentator

The problem with this is the new apnea patient is so inexperienced that the "system" takes advantage of them. There is way too much time between a diagnostic study and getting a machine, and the DME doesn't help either, 6-8 WEEKS is just too long. Their interest is typically getting the patient the cheapest (to them) available machine to the patient that makes them the most profit. That machine is typically a brick, a machine with no detailed data on it, but wouldn't make any difference because the patient is never informed that anything other than that one machine is even available. And to get an adjustment with that machine would require another sleep study. Most doctors, if you can get in to see them before 3 months, just look at summary data and say you are meeting compliance and your numbers look good. See me in a year. The best machine to provide a patient is generally an auto-CPAP because it is more flexible and most of them do provide detailed data, often down to the breath by breath level. But alas it costs the DME more and it is classified the same as a brick CPAP by the insurance. Better would be a general CPAP class where the different machines are discussed and even a proper mask fitting session with a variety of masks. A class designed to make the patient informed. Now that is a novel idea in this field. Most people would be better benefited by going directly from the diagnostic study to an APAP with an SD card which is evaluated no more than 3 days after starting and pressures reset to appropriate for them values. This would save the insurance companies a ton of money.

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jeffez +0 points · almost 2 years ago

Bravo, bonjour. How about an online webinar series? Many people/authors use this to introduce their products. DME's probably wouldn't do it. They seem to want people in the dark...w/o knowledge. I'm only on 5th day and frustrated about F20 mask with my BiPAP Resmed Aircurve 10 S and wanting to swap to an Auto version. Don't know how to finance a webinar... W/O this forum and all the great participants, I'd be more in the dark. Looking for the light at the end of the tunnel!

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Ruby +0 points · almost 2 years ago Sleep Commentator

I think an online webinar is a great idea but I would be hesitant to have one initiated by a manufacturer. Although that may be the only way to find the funding for one. If anyone else wants to weigh in, what sort of issues would you like to see covered in a webinar?

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Biguglygremlin +0 points · almost 2 years ago Sleep Enthusiast

A better range of product choices for colour co-ordination perhaps? :)

Ok if you are going to be all boring and serious about it I have three wishes:

1) Global education about Apnea.

2) A magic weight loss pill.

3) Universal fail-proof masks.

Oh and a pot of gold would be nice too!

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bonjour +0 points · almost 2 years ago Sleep Commentator

Thank you, thank you First let me say there are some really good knowledgeable people here that are willing to step out and help visitors here, so stick around. That is the only reason I'm here. The best guide I am aware of is one I wrote and it was promoted to valuable Sticker space on another forum. It is also promoted in many of the forum members signatures. That just means that it is considered very good info by many different people. Item 2 in this article compilation is "New to CPAP – The Process" It takes you from touring Egypt, you know "de Nile", all the through successful therapy.

[http://www.apneaboard.com/wiki/index.php?title=New_to_Apnea%3F_Helpful_tips_to_ensure_success]

Fred

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jeffez +0 points · almost 2 years ago

Thanks, bonjour. Looks very helpful. Maybe nmsalem could create as part of research effort? I agree with Ruby re:Vendor sponsorship unless it was done w/o vendor bias, which would gain considerable goodwill and readers would probably consider their products. NO vendor bickering would be allowed.

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Biguglygremlin +0 points · almost 2 years ago Sleep Enthusiast

Dare I question the validity of the overall concept?

Did we really hijack this thread to talk about a webinar involving patients who are generally overweight and sleep deprived?

The reason this forum works so well for me is that I don't have to wash my hair in a futile attempt to get rid of the strap marks and I don't have to find non-existent clothes that make me look good and I don't need to have to rally those barely functional neurons to try t find a quick meaningful response on the spur of the moment.

In this forum I have time to think it through and adapt and adjust my comments and even then I can go back and edit multiple times until it says what I want it to say.

It seems to me that a webinar for CPAP users would convey intensity and emotion which might be entertaining but it would have questionable scientific or medical value compared to well thought out written responses.

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RebeccaR +0 points · almost 2 years ago Support Team

Dear All, The research solicitation was removed and I want to explain why. MyApnea is committed to being a trustworthy, friendly space for people with sleep apnea. We work hard to want to make sure that the forum is run by YOU, the patients, not solicitations or even spam. Otherwise, there might quickly be an imbalance of content and dilute the great conversations that currently go on here among patients and stakeholders. We also want to make sure MyApnea members aren't vulnerable to phishing type attacks and giving their emails to bad actors.

With that said, we hope that MyApnea can also be a vehicle to advance our collective knowledge and understanding of sleep apnea through research. Even though we don't have researchers post on the forum, we are happy to work with legitimate groups to share opportunities for research on the blog (announcements category). This way we can filter some of the noise that comes through the forum, but still make sure we are telling the MyApnea community about legitimate and exciting research opportunities going on!

Let me know if you have any questions or comments.

Thanks as always for your engagement, excitement, and mutual-generosity!

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