CPAPtalk.com

kaiasgram wrote:

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.

Thanks, I found and voted for it.

Sludge wrote:FYI:

http://www.indianasleep.com/wp-content/ ... Apnea1.pdf

Whoa. Lot of acronyms there.

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?

PCORNET just called!

They want their million dollars back!

Wow, I thought this thread was dead weeks ago. A lot to read, and most of it was bewildering to me.

1- Why is everyone conflating myapnea.org and the ASAA? I know they're affiliated, but they're completely different efforts. Myapnea.org is a research project. The ASAA is supposed to be a patient advocacy organization. Myapnea.org is brand new and the ASAA is 25+ years old.

2- Why does everyone point to this site as an example of patient advocacy? It isn't. It's a very helpful resource for people who have been screwed over by the medical establishment, but it tries to change nothing. It's of help to the lucky few who find their way here, but the people who get help here are a tiny drop in the ocean of people who need help.

3- There are organizations dedicated to specific medical conditions and there are patient advocacy groups. They should not be confused with one another. The former group works within the system, makes no waves, and basically tries to raise money for research. The latter tries to be a PITA, in order to advocate for specific changes.

palerider wrote:

asleep@thewheel wrote:you talk about the data being important... when is the ASAA going to come out 100% *AGAINST* brain dead cpaps such as the persperonics plus and the resmed s9 escape and as10 cpap machines?

THAT is an issue that an advocacy organization should be trying to deal with. That should be the kind of issue that smacks you in the face when you visit the ASAA website, if they want to be a patient advocate groups rather than a fund raising organization. I've been aware of the changes to the ASAA management for some time now. I hope for the best, but I have yet to see any terribly hopeful changes. I'm glad a moderator at their forum has a link to Sleepyhead in his sig, but c'mon, so what? The first step to dealing with a problem is to define it fully. The list of issues that an advocacy organization for sleep disorder patients should address is a long one. Where is it? In the "It's better to light a candle than to curse the darkness" tradition, I tried my hand at writing an issue site:

http://osaaction.org/

I find the situation bewildering. The numbers simply don't add up. The CDC and NIH say upwards of twenty percent of the population of the USA is affected by OSA. Because conditions for diagnosis and treatment are god-awful, 90% of the affected are undiagnosed. Despite this, the organization dedicated to advocating for patients supports only one full-time employee? Why? The situation is outrageous, yet no one seems outraged.

JQLewis wrote:Why is everyone conflating myapnea.org and the ASAA?

http://www.apneasupport.org/asaa-awarde ... 33419.html

JQLewis wrote:The numbers simply don't add up. The CDC and NIH say upwards of twenty percent of the population of the USA is affected by OSA.

Sleep-disordered breathing, including obstructive sleep apnea, affects more than 15% of the population, and causes daytime sleepiness and associated injuries (e.g., falling asleep while driving), hypertension, cognitive impairment, and is associated with metabolic syndrome, and an increased risk of heart attack, stroke and mortality. In children, sleep-disordered breathing is associated with cardiovascular and metabolic risk factors, attention-related behavioral problems, and poor academic performance

But only

It is estimated that 4 percent of middle-aged men and 2 percent of middle-aged women meet minimal criteria for sleep apnea syndrome.

JQLewis wrote:Because conditions for diagnosis and treatment are god-awful...

How ya figure? With a strong STOPBANG, HST and APAP, a previously undiagnosed OSA can be on treatment tomorrow night.

JQLewis wrote:The situation is outrageous, yet no one seems outraged.

Most people don't really care about their health:

More than one-third (34.9% or 78.6 million) of U.S. adults are obese.

Obese-- not overweight.

Now that's outrageous.

First you say this...

JQLewis wrote:Wow, I thought this thread was dead weeks ago. A lot to read, and most of it was bewildering to me.

1- Why is everyone conflating myapnea org and the ASAA? I know they're affiliated, but they're completely different efforts. Myapnea org is a research project. The ASAA is supposed to be a patient advocacy organization. Myapnea org is brand new and the ASAA is 25+ years old.

Then you conflate this..

JQLewis wrote:THAT is an issue that an advocacy organization should be trying to deal with. That should be the kind of issue that smacks you in the face when you visit the ASAA website, if they want to be a patient advocate groups rather than a fund raising organization. I've been aware of the changes to the ASAA management for some time now. I hope for the best, but I have yet to see any terribly hopeful changes.

But yet you don't know why?

JQLewis wrote:Wow, I thought this thread was dead weeks ago. A lot to read, and most of it was bewildering to me.

2- Why does everyone point to this site as an example of patient advocacy? It isn't. It's a very helpful resource for people who have been screwed over by the medical establishment, but it tries to change nothing. It's of help to the lucky few who find their way here, but the people who get help here are a tiny drop in the ocean of people who need help.

I think it depends on how you define "advocacy." This site empowers patients to, as my kids' guidance counselor calls it, "self-advocate."

Systemic change is useless to me if I die from poor treatment while I'm waiting.

I'd like to keep breathing in my sleep until the revolution comes.

JQLewis wrote:...I thought this thread was dead...

Not at all...

...THIS is Dead:

The Dead

Hmm.

Haven't been able to get on the other board for days. Perhaps that's the end of it.

Wondering how perchancetodream7 is doing.

Mayhaps she shall wander over here...

Sludge wrote:Hmm.

Haven't been able to get on the other board for days. Perhaps that's the end of it.

Wondering how perchancetodream7 is doing.

Mayhaps she shall wander over here...

She did wander over here yesterday: viewtopic/t102496/Forced-Air-Flow-Chang ... chine.html

I also haven't been able to get onto the other board for days.