CPAPtalk.com

asleep@thewheel wrote: ↑

Fri Apr 27, 2018 7:42 am

We are a 25 year old organization that was run by doctors into the ground until about 5 years ago. We are now a 5 year patient lead, patient centered, and patient governed advocacy association. We are not a trade association.

That bears repeating.

Thank you for your efforts.

and industry financed.

jnk... wrote: ↑

Fri Apr 27, 2018 11:35 am

The owners of this site place no ads here.

Unless you click on someone's equipment listing

Janknitz wrote: ↑

Fri Apr 27, 2018 12:34 pm

They had a forum before. It was so heavily moderated that you couldn't say anything that did not comply with the industry mandates that "patients" were not to adjust their own settings, to know how to get into the clinical menu, etc. If you dared to post a link, even to something helpful and non-commercial, you could get banned.

No thanks. They can use the words "patient-focused" all they want, doesn't mean they care.

In all fairness.. that was starting to change, just before the site went down permanently. Some of the previously banned people had been unbanned and invited back.

palerider wrote: ↑

Fri Apr 27, 2018 5:47 pm

Janknitz wrote: ↑

Fri Apr 27, 2018 12:34 pm

They had a forum before. It was so heavily moderated that you couldn't say anything that did not comply with the industry mandates that "patients" were not to adjust their own settings, to know how to get into the clinical menu, etc. If you dared to post a link, even to something helpful and non-commercial, you could get banned.

No thanks. They can use the words "patient-focused" all they want, doesn't mean they care.

In all fairness.. that was starting to change, just before the site went down permanently. Some of the previously banned people had been unbanned and invited back.

Was that what precipitated them closing it down?

palerider wrote: ↑

Fri Apr 27, 2018 5:45 pm

jnk... wrote: ↑

Fri Apr 27, 2018 11:35 am

The owners of this site place no ads here.

Unless you click on someone's equipment listing

Fair point. Forgot about that.

I do not mind the equipment links; especially when you consider our sponsor's
prices are always listed upfront--so one can do comparisons.
Not many places will do that.
Too often, the bottom line is a dirty secret, (only shame is hidden so energetically)

chunkyfrog wrote: ↑

Fri Apr 27, 2018 8:06 pm

I do not mind the equipment links; especially when you consider our sponsor's
prices are always listed upfront--so one can do comparisons.
Not many places will do that.
Too often, the bottom line is a dirty secret, (only shame is hidden so energetically)

The only problem I have with the equipment links is they keep breaking them when they stop selling something... which is really stupid... they've still got the page up on their site for older equipment, having the link up there to drive more traffic to their site would be smarter, AND it would fix the issue we continuously have with people putting in their stuff, and it not showing up.

I haven't been around in a while so there may be more than I know about this but it seems to me like they are at least trying and making an effort to do good for CPAP users.
That should be worth something. Maybe not, but if we are always skeptical and negative, we miss the good things that come around.
Anyway, what harm does it do to be nice to them. Maybe even listen in on their event. At least they would know there's interest in improving things.
Just my 2c.

Because on this site, a poster may give bad advice when just "trying to be helpful."

SoClean people come here to "help" us never have to clean our equipment.

Dentists come here to "help" us throw away our PAP machines to use oral appliances instead.

The Dream Police come here to "help" us understand that it is illegal for patients to be actively involved in finding the most effective pressures.

So claiming to want to be helpful doesn't buy you much credence here. This place tends to be more of a put up or shut up sort of place, since some of the greatest damage done to PAP patients historically has been done by people who were just trying to be helpful.

Being polite and nice is a good thing. But so is calling a spade a spade.

I have received personal benefit from some of the actions of the ASAA. I have heard some of their people speak in person, and I have participated in group discussions with some of them. I respect them. But I do wish to be clear concerning some areas in which their priorities did not align well with mine.

If you have positive things to say about specific examples of positive benefits patients get from the ASAA, this thread would be a good place to say them. Positivity is welcome here. Balance is a lofty goal. But their officers are likely to get the same treatment as anyone else. If they truly wish to help patients, they are welcome to participate here and actually help by putting their fingers where they claim their intentions are.

Hey. Just me.

Here is the crux of the matter as stated by this site's owner back in 2008:

viewtopic.php?f=1&t=37049&p=322532#p322532

The link Johnny gives in that post is now broken. I posted the present working link earlier in this thread.

https://www.sleepapnea.org/about/indust ... -the-asaa/

sleepyb wrote: ↑

Sat Apr 28, 2018 2:11 am

I haven't been around in a while so there may be more than I know about this but it seems to me like they are at least trying and making an effort to do good for CPAP users.
That should be worth something. Maybe not, but if we are always skeptical and negative, we miss the good things that come around.
Anyway, what harm does it do to be nice to them. Maybe even listen in on their event. At least they would know there's interest in improving things.
Just my 2c.

+1

At least from the ones who post here, there is a heavy bias against capitalism/market-based systems. This is on a forum that is provided free of charge by very much pro-market/pro-capitalism entrepreneurs.

There is a blindness to all the wonderful products and services that capitalism has brought us. Personally, I am old enough to be absolutely awestruck at what has been brought to us.

jnk... wrote: ↑

Sat Apr 28, 2018 6:22 am

The Dream Police come here to "help" us understand that it is illegal for patients to be actively involved in finding the most effective pressures.

My major concern is we do not want to associate too closely with people that either may be the Dream Police or look for ammunition for their cause.

prodigyplace wrote: ↑

Sat Apr 28, 2018 8:48 am

My major concern is we do not want to associate too closely with people that either may be the Dream Police or look for ammunition for their cause.

If we don't associate with them, how will we ever convince them there is a better way?

One supports entrepreneurs, manufacturers, and markets by buying the products and services one wants.

One supports causes by donating funds and time.

The trick is in understanding the difference.

We each choose which causes we support and who we buy from, preferably based on knowledge and education to fully understand what most closely aligns with our positions and preferences. That fact is not actually anti or pro anything.

A truly market-based system is not corrupted by biased collusion in the form of minimum-pricing requirements, IMO.

There is a difference between "associating" in the form of equal discussion and "associating" in the form of publicly aligning oneself with. But you know that.