PurSleep gone for now & why I did what I did

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Post by Guest » Fri Apr 06, 2007 9:15 am

Becky said:
I hope your testing is successful and QUICK. I really enjoy your products. I am already running low of FRESH and I have only had it for week and half. Faith user of the wonderful PurSleep system.
Actually people were giving very similar glowing (pun intended) endorsements to another product awhile back. It too was assumed to be harmless (it says so right on the box, for Pete's sake!) and claimed to offer all sorts of benefits. Behold the power of wonderful, harmless, invigorating RADIUM SUPPOSITORIES!

http://www.orau.org/PTP/collection/quac ... radsup.htm

Laugh (and cringe) all you want... but I'm not trying to be funny. I'm dead serious. Today our reaction is "holy crap, what the hell were they THINKING?" but AT THE TIME, it was considered a harmless, helpful product. There was absolutely no data (yet) indicating that long-term use might be harmful to one's health. Nobody knew that the long-term effects of use could be devastating.

Go ahead, laugh at me. Just remember that users of "Vita Radium" were laughing at people like me too, not so long ago. The product made them feel better, and it was harmless! The naysayers were awful, loudmouthed, negative people with an agenda against the product! Except that it wasn't, and they weren't.

It'll take decades of 8-hours-per-day, closed-circuit essential oil vapor inhalation by a large number of lungs to finally see if today's laughers are correct, or if they're more like the "Vita Radium" laughers of yesteryear.

There is no data in existence yet on the possible health effects of this specific new type of usage of essential oils (long-term inhalation for 8 hours per day in closed respiration circuit). None. Do whatever you like, but sit and think about that fact before starting. Also consider that you're not putting some cream on your foot or something, you're putting substances directly into your lungs, the highway to your bloodstream, for nearly 3,000 hours each year.

Yeah, I'm a "Guest", so I'm "hiding" and nothing I say can *possibly* be worthwhile, and how DARE I question the adoring fans of the product, blah blah blah. Whatever. Flame me all you like, because that means you've *read* my argument and my points, which is my whole and sole goal here... to add a voice of rational, reasonable doubt to this discussion. If I'm flamed by product devotees, so be it.


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rested gal
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Post by rested gal » Fri Apr 06, 2007 9:40 am

DreamStalker wrote:Rooster -

You called her no names ... nor have I.
Nope, you two didn't. Nor did most of the people who have responded in this thread. I think Christine was referring to some who did, as in these comments:

"a twit like you"

"freakin' drama queen"

"nosey safety nazi"
DreamStalker wrote: I think she is just very easily offended by anyone who does not agree 100% with her own view of the world.
Having read many extremely helpful posts by christinequilts over the years, I wouldn't characterize her as "easily offended", least of all by people who don't agree with her.

I've always regarded Christine as an extremely intelligent person and a very open minded person. I still do. She obviously felt strongly that Brett's diffuser needs independent testing before being promoted as "safe" to use inside the breathing circuit of medical devices...particularly machines more complicated than a straight cpap. She stated her concerns. When it seemed to her that her concerns were being waved aside, she stated them more strongly. Some others disagreed strongly.

No matter what any of us may think of the FDA, that agency is the regulatory body in the U.S. when it comes to "medical devices." I think Christine did Brett a huge favor. Brett's smart to pursue whatever testing he needs to do to satisfy FDA requirements for promoting his invention as safe to put into the breathing circuit of xpap machines.

I wish Brett well. I thank Christine for bringing up questions that need to be answered. And for being the caring, reasonable person I've always seen her to be.
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WearyOne
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Post by WearyOne » Fri Apr 06, 2007 9:53 am

rested gal -- Very well said!

Pam

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-SWS
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Post by -SWS » Fri Apr 06, 2007 10:42 am

rested gal wrote:Having read many extremely helpful posts by christinequilts over the years, I wouldn't characterize her as "easily offended", least of all by people who don't agree with her.

I've always regarded Christine as an extremely intelligent person and a very open minded person. I still do. She obviously felt strongly that Brett's diffuser needs independent testing before being promoted as "safe" to use inside the breathing circuit of medical devices...particularly machines more complicated than a straight cpap. She stated her concerns. When it seemed to her that her concerns were being waved aside, she stated them more strongly. Some others disagreed strongly.

No matter what any of us may think of the FDA, that agency is the regulatory body in the U.S. when it comes to "medical devices." I think Christine did Brett a huge favor. Brett's smart to pursue whatever testing he needs to do to satisfy FDA requirements for promoting his invention as safe to put into the breathing circuit of xpap machines.

I wish Brett well. I thank Christine for bringing up questions that need to be answered
That has always been my take of Christine over the years as well, Laura. Thanks so much for saying that on her behalf. I continue to respect her immensely.

In my opinion this has been a hot issue, in part, because PurSleep represents a bona fide empirical or epidemiological unknown. There are at least two key facets to epidemiological uncertainty here in my opinion: 1) PurSleep's effects on CPAP compliance (potential benefits), and 2) Essential Oil's potential long-term effects on human physiology (if any at all). Unfortunately no one here has a crystal ball. And fortunately, no one here is burdened or qualified to make public welfare decisions. The FDA is. And I think that was the premise of Christine's position. In my mind there is also a legitimate question of whether the in-circuit diffuser (irrespective of essential oil) warrants FDA scrutiny as a medical device.

But the flip side to that issue of federal agency scrutiny is personal choice. That issue of personal choice versus state or agency determine welfare will always be a hotly debated issue. And we can clearly see both sides or perspectives of that issue being hotly voiced in this thread as well. I believe the issue of personal choice versus state-comprised public welfare goes back much further than even the ideals of state Socrates conveyed in Plato's Republic.

I honestly suspect that PurSleep is a good thing on whole. And while I believe in personal choice, I also happen to believe in certain "ideals of state". Public welfare would be one of those ideals that I happen to believe in. Public welfare, regarding medical devices, is at least endeavored by the FDA. Now there's a whole new round of message board debate to be had: FDA. .


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Post by Sleepy-eyes » Fri Apr 06, 2007 11:08 am

I'm only speaking for myself here, not others who disagreed with christinequilts. I don't fault her for her motive or intention. I don't dislike her in any way and have never had any contact with her prior to this fiasco. She has every right to bring her concerns to Bret's attention and that's where I find fault.

I have had concerns and questions about the Pur-Sleep system from the beginning. I've addressed those points in PM's to Bret..............who has answered them to my satisfaction every time. So quickly sometimes I find it difficult to understand how he has time to attend to his regular job! I have not attacked him on the forum with "The sky is falling" rants, trying to scare everyone away from his product. This man has found a good product. He wanted to share it with people suffering from OSA. He reached deep in his pocket and made a sizeable investment (I know because I used to be in the plastic manufacturing business) to bring his idea to fruition. He has been extremely open to comments and suggestions made to him in my PM's. He wants this product to be available to people with OSA. He also wants it to be safe to use. I think he feels it is a "mission" to accomplish this. He is a Lawyer and understands, even better than you and I, what a litigious society this is. So while he has been very accommodating in PM's, I fully understand why he would pull back and be defensive when attacked on the open forum. Frankly, I can't blame him.

So I don't fault christinequilts for her motive..............just her action. Going to the FDA instead of discussing it quietly with Bret................and then posting the self-righteous thread about what she did and why (sounded to me as if she was asking us all to bow down and thank her for saving our lives) just went against my grain. I believe in facing a person when there is a disagreement.

I'm sorry this thread has turned into such a circus. I'm sorry names were called. I'm sorry people disagreed with her. But all of that is going to happen on an open forum such as this. It's my personal opinion none of these things would have ever happened if she had communicated privately with Bret.
Chris

I'm not a Doctor, nor am I associated with the medical profession in any way. Any comments I make are just personal opinions. Take them or leave them. (justa don't gripe at me if ya donna like 'em!)

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Post by Sleepless_in_LM » Fri Apr 06, 2007 12:09 pm

Sleepy-eyes wrote:I'm only speaking for myself here, not others who disagreed with christinequilts. I don't fault her for her motive or intention. I don't dislike her in any way and have never had any contact with her prior to this fiasco.
Ditto for me! I would even go so far as to say she has every right to bring her concerns and questions to this forum for everybody to read and react to and then hear Bret's answers. That is one way we "adults" gather information to make informed decisions. I appreciated her comments/concerns/questions and they made me think. That is part of what this forum is so good at.

When she said she called the FDA, I cringed. I thought that was taking it a bit far, but didn't feel the need to respond. But when she started a new thread to inform us that "Pur-Sleep" is "gone for now," and proceeded to compare this whole thing to lying cheating drug companies/auto manufacturers and throwing Bret into the same category, and then comparing this to some unfortunate corporate disasters of the past.... well, I just couldn't let that go without a response. If for no other reason then to try to help protect Bret's reputation, since I also have had numerous PM's with him and he has answered every question to my satisfaction and it was clear to me he was trying to bring something he personally found extremely helpful to others struggling with their treatment.

So I don't question Christine's intentions or motivations, I just think it became way to personal and she went way too far.

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frete50
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Post by frete50 » Fri Apr 06, 2007 12:26 pm

Anonymous wrote:
I hope your testing is successful and QUICK. I really enjoy your products. I am already running low of FRESH and I have only had it for week and half. Faith user of the wonderful PurSleep system.
Actually people were giving very similar glowing (pun intended) endorsements to another product awhile back. It too was assumed to be harmless (it says so right on the box, for Pete's sake!) and claimed to offer all sorts of benefits. Behold the power of wonderful, harmless, invigorating RADIUM SUPPOSITORIES!
Guest,

You obviously think I care about you opinion. I was in the military for many years using all sorts of commercially band products and as far as I know I am still live and kicking.

Also as you might remember and I do thank god I was not in the military in the 40's when they were experimenting and testing nuclear weapons. So I understood that using products with RADIUM was stupid and very far from harmless.

Becky, E6, Retired, USN


Guest

Post by Guest » Fri Apr 06, 2007 1:08 pm

You obviously think I care about you opinion.
Nah, I just quoted you as an example of the positive reviews of the product. I could've just as easily taken a dozen other quotes by other folks.

I don't really care who cares about my opinion... just adding it to the mix. Those who are interested will read and consider it, those who aren't won't. It doesn't bother me either way.
I was in the military for many years using all sorts of commercially band products and as far as I know I am still live and kicking.
Yeah, the military uses all sorts of nasty stuff of questionable safety. Fortunately not a lot of it seems to significantly hurt our servicepeople, and in some cases the nastiness is necessary to get the job done. Hats off to our folks in uniform.
Also as you might remember and I do thank god I was not in the military in the 40's when they were experimenting and testing nuclear weapons. So I understood that using products with RADIUM was stupid and very far from harmless.
You (and everyone else) only understood it LATER, long after the fact. This is my whole point. Most of these dangerous radium consumer products were introduced and sold and used long before the 1940's... in fact, all the way back to 1898. They were popular and widely-used until the 1920's when suspicion started to grow. Even despite that, they continued to be used long after that point, until so much long-term data became available that the dangers became crystal clear and well-known.

However, at the time these products were introduced *nobody* knew the effects of long-term use. It took a very long time for that to become known. That's the entire point I'm trying to get across. Looking back in 2030 and saying "I understand this product is dangerous" or "I understand this product is harmless" doesn't help today in 2007. Hence caution is strongly advised.

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frete50
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Post by frete50 » Fri Apr 06, 2007 1:19 pm

Again you assume I care about your opinions. Well guess again. I will continue to use the PurSleep system. I have used essential oils and incense for a very long time. No effects yet. I am also healthy. With the exception of snoring, pretty much all my life. So if using the system bothers you don't. Just do not hassle others who like the system. And again I will continue to use it no matter how much you berate it and the others on this board who use and love it.

Becky, E6, Retired, USN

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StillAnotherGuest
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Get The Bong!

Post by StillAnotherGuest » Fri Apr 06, 2007 2:05 pm

Oh YEAH?! Well I don't care that you don't care that Guest don't care what you think I think about..... ummmm...I lost my place.

WHOA, did I tell you that I found some more lavender? I mean, REALLY, REALLY GOOD lavender?

Image

BRB, God wants to talk to me. Or maybe it's the FDA.
SAG
Image

Aromatherapy may help CPAP compliance. Lavender, Mandarin, Chamomile, and Sweet Marjoram aid in relaxation and sleep. Nature's Gift has these and a blend of all four called SleepEase.

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WearyOne
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Re: Get The Bong!

Post by WearyOne » Fri Apr 06, 2007 2:16 pm

StillAnotherGuest wrote:Oh YEAH?! Well I don't care that you don't care that Guest don't care what you think I think about..... ummmm...I lost my place.

You're good, SAG. Almost died laughing.

Send me some of that lavender, will ya? Never smoked anything in my life, but this might be worth a try.

Pam

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frete50
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Post by frete50 » Fri Apr 06, 2007 2:17 pm

SAG,

You be silly. And thanks for the lightheartedness.

And If I smoked that sounds really good. Maybe this will make me want to start.


Becky

Guest

Post by Guest » Fri Apr 06, 2007 2:32 pm

frete50 wrote:Again you assume I care about your opinions.
And again you're simply mistaken.

I'm expressing calm, logical, decently-thought-out concerns about the product in a public forum, to facilitate discussion. This has zero to do with you or anyone else personally.
frete50 wrote:I will continue to use the PurSleep system.
Okay. It makes no difference to me. I sincerely hope you get good results from it!
frete50 wrote:I have used essential oils and incense for a very long time. No effects yet. I am also healthy. With the exception of snoring, pretty much all my life.
Good!
And again I will continue to use it no matter how much you berate it and the others on this board who use and love it.
I never "berated" it, nor anyone who uses it. Logical discussion and debate about valid concerns with a product is not "berating" it or its users.
frete50 wrote:So if using the system bothers you don't. Just do not hassle others who like the system.
Sorry, but people are allowed to make points here that do not agree with your opinion. That is not called "hassling".
.

GuestForADay

Post by GuestForADay » Fri Apr 06, 2007 2:51 pm

Is this thread closed to new posts?

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tomjax
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out of control

Post by tomjax » Fri Apr 06, 2007 3:08 pm

WOW-
should we all go and call the FDA on our glade air freshener and the little thingies in our car that dangles from the radio knob?

Call it a food supplement and make any clain in the world you want.
Put a magnet with it and cure every form of arthritis known.

Have we not gotten a bit too ANAL over this?

Do we really think we can ever have a ZERO risk of anything in the world?

No Way!!
All you have to do is to drill a small hole in theend cover plate the size of the outlet of theunit and plug it in there and enough air will pass by it and everyone lives happily ever after.
It is not IN thel delivery loop,

It is OUTSIDE and there is no problem.

Some need to GAFL--------

There is no law against being stupid.