myapnea dot org

[HoseCrusher]

Thank you for reaching out in an attempt to help people get the most out of their xPAP experience. I know that change comes with difficulty but I am willing to stick my neck out and offer a suggestion or two.

I will also try to ignore "past history" unless it slaps me in the face...

[asleep@thewheel]

I am not asking anyone to go over there and post. This is your forum. Have at it. In order to do research, you have to validate the things you want in their world. If you don't want others to suffer like we all did then be selfish. It is a work in progress. You have an ability to reach out to many millions of patients in a Facebook network manner if you go to their IRB's Institutional Review Boards and their in house legal counsels and demand and require in writing the changes you want to see like moderated forums. These are policy people. That is how they work. We all got to the point where we were mad and not going to take it anymore. We learned to fend for ourselves and did what we have to do to survive and live with our disease/condition, etc. I agree with all of you for the most part. Don't be a hater and if you are really better and have got your therapy down then pay it forward and help us help others. I am volunteering and doing something about it good or bad time will tell. You have to ask yourself What else could you all be doing besides posting in here to make a difference in this very flawed healthcare system? The help and peer to peer support that you all provide in such a large community is Awesome. I don't post often nor do I plan to in the future. I enjoy curating and connecting the dots of sleep with all of the other comorbidities on our Facebook page.

Sleep well, peace. Thank you Hose Crusher.

AA

[palerider]

it. In order to do research, you have to validate the things you want in their world.

"discovery requires experimentation"

tbh, I didn't understand most of the rest of that scream of consciousness.

[squid13]

I think a lot of people are paying it forward on this forum, by all the help that comes from this forum.

[asleep@thewheel]

it. In order to do research, you have to validate the things you want in their world.

"discovery requires experimentation"

tbh, I didn't understand most of the rest of that scream of consciousness.

I am far from perfect and have my skills and deficits, ADD being one of them. This is invasive research. Nobody is cutting or experimenting on you without your consent. These are risk adverse institutions which adversely effects their innovation. PCORnet is a much safer cleaner and transparent method to participate in Clinical Trials if you want to opt in for something like that. Doing the same thing over and over expecting a different result will get us know where as one great man once said. You all do a wonderful job of paying it forward on this forum. This Forum is a testament to that. I applaud that. I got a lot of help here in the past on my journey to learn how to manage this disease. I write via Dragon. Thats how I talk. my cadence . my voice. mypnea.

Keep writing and telling your stories. That is the only way anybody is going to hear.

AA

[Greg Riddle]

I think the only thing that will help improve the patient's health is for doctors and dme reps to stop thinking patient's are stupid and think of them as being ignorant and try to educateinstead of dictate. In my situation, if I had been educated by the dr out dme I wouldn't be a year and some months in with a machine that can't inform anyone how the therapy is working. I wouldn't have to go through another titration last night. I would have meet the dr before a year after I decided to fix my problems. I'm trying a bit but I'm very frustrated over my situation

[Johnnyb01]

I think the only thing that will help improve the patient's health is for doctors and dme reps to stop thinking patient's are stupid and think of them as being ignorant and try to educateinstead of dictate. In my situation, if I had been educated by the dr out dme I wouldn't be a year and some months in with a machine that can't inform anyone how the therapy is working. I wouldn't have to go through another titration last night. I would have meet the dr before a year after I decided to fix my problems. I'm trying a bit but I'm very frustrated over my situation

never spoke with the dr who prescribed my therapy, 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

[chunkyfrog]

De ja vu. Does this not remind you of at least one (formerly frequent commenter) member,
who spiraled down the rabbit hole of reason? It does me.

[grayghost4]

On another message board I read that you folks got a Million Dollar grant recently. If that website software is the best you can do with a Million Dollars .... you should all through in the towels and give the money back .

[chunkyfrog]

Money has already been spent. Bermuda was lovely.

[grayghost4]

A Devil, Frog, Pumpkin,and Elemer Fud ..... I think we are all living up to our avatars

[Krelvin]

... changing pressure is technically considered illegal since under current law it requires a physicians oversight.

Could you cite where this is law?

[chunkyfrog]

---"ipse dixit", ---Latin for "because I said so,"
It works when the ignorant are so cowed by authority, they never question it.
There is no such law, at least in the U.S.

[palerider]

... changing pressure is technically considered illegal since under current law it requires a physicians oversight.

Could you cite where this is law?

it's "law" in their heads! it's part of compliance, being good little money sources and doing what you're told.

[palerider]

---"ipse dixit", ---Latin for "because I said so,"
It works when the ignorant are so cowed by authority, they never question it.
There is no such law, at least in the U.S.

+1
again, why it's all about compliance and not effectiveness.