CPAPtalk.com

greyhound wrote:I hope DrBandage reads this and can interpret it (I know s/he's not a pulmonary specialist) for the rest of us.

Greyhound -
You're very kind to mention my name. I will certainly take a long look at the articles. I can offer my opinion as a physician, but I know there are lots of folks here that are "scary smart" when it comes to this type of technical information.

Probably a strong suit of medical training IMHO is the devotion to the study of how to evaluate the "truthiness" of medical literature. Journal clubs were and are a key part of medical school and residency. There is indeed a very stringent scientific approach that is applied to the evaluation of research papers. Extensive knowledge of statistical theorems is a must, as is critical thinking.

But, having said that, I will quickly acknowledge that sleep medicine is very much ignored in basic medical training. It's so sad, because as part of training in med school and internship we are required to deliver babies, assist in surgery, and all manner of things that we may never need to do. But, everybody needs to sleep well to be well. (I just made that up, but I like it!).

So how is it that something so essential to good health and happiness is so underappreciated, underdiagnosed and undertreated? Beats me. It's not like we were lazy in our training (don't get me started). But I really think there should be far more emphasis on such things as nutrition and sleep.

Sleep science is truly in its infancy as -SWS has pointed out so eloquently (among many, many other things!). Even one generation ago, there was no such thing as CPAP, while surgery has been practiced for centuries! Even one generation ago, there was no internet message board like this to help others achieve what all of us need and deserve in regards to what so many take for granted.

The medical community responds, albeit painfully slowly, to the public's demand to know. (E.g. alternative medicine courses are now a vital and growing part of virtually all med school curriculums.) Medical and civic leaders will look back one day on this neglected issue and recognize that it is indeed a very complex health issue absolutely riddled with problems in just about every facet imaginable.

You certainly never miss it until it's gone, but when it's gone you're in deep doo-doo. Even as a physician, I have been severely challenged to get this issue under control and reclaim my life. It is heart wrenching to think about the challenges facing others who may not have the advantages that I have. This is an equal opportunity ailment, so you can bet that the poor and the undereductated members of our society are completely adrift. I shudder to think about how difficult compliance and progress has been even with the resources available to me, both as a physician and as an avid reader of this board.

People like Rested Gal, and Mile High Sleeper, and so many others have helped save the quality of life, and indeed the life itself for so many of us. Those who share so willingly are this century's version of a cyber Mother Teresa figure. I am speaking quite literally when I assert that people such as these save innumerable lives, prevent early death, and all the horrible morbidities that accompany untreated sleep disturbances. How many people would have been "lost to follow up" as we doctors say without the Collective Wisdom that this site and others makes available to all of us? Why didn't my visit with several Sleep Docs yield even one mention of the support groups that are available and boards such as this?

Just as vaccines pay tremendous dividends for the cost involved, "word of mouth" through the online community offers extraordinary opportunities for improving the lives of others in our society, for the cost of a keystroke!

I'm starting to feel a rant coming on!

Anyway, paraphrasing the bottom line: no one makes a bigger mistake than he does nothing because he can only do a little.

This problem is not going away, and it will continue to claim lives and quality of life until it is given the attention that it deserves. Send "letters to the editor", talk to your friends about this disease. Tell your doctor about this board. Complain to Patient Relations if your diagnosis and treatment were inadequate. Notify regulatory agencies about quality of care issues. Elevate the definition for community Standard of Care for sleep deprivation and its ilk.

Information is power, and the status quo prevails until there is enough critical mass to change things. Just as people "never" spoke powerfully about such issues as mental illness, abuse by the clergy, domestic violence, child and elder abuse, our issue will be only our own until we own it.
<End Rant>.

SWS

The companion of that is believing Resmed, Respironics and Puritan Bennett etc: would never publish incorrect or wrong information about their products.

Researchers have a valid, perhaps even critical, role in making sure medical products do what their makers claim and this is especially the case in a newish field like CPAP. AutoPaps have been under the spotlight and fairly so. The same will need to be done with each new generation of CPAP.

If the researchers testing is flawed I have no doubt that the medical profession and the manufacturers would be able to publish credible data explaining in a credible fashion why the research is invalid or needs refining. It took years for the R-- algorithms to be accepted as representational patterns useful in respiratory research.

For someone to reject this repeated research from different countries & laboratories, and especially in the face of its international publication (as in this documents case), to me requires a better level of argument than I have seen put forward yet.

I still recall why Ralph Nader came to such prominence in the US

Cheers D

My dad is an ER doctor. When I brought all this up with him, his response was "Well, you MIGHT sleep with that if it helps you sleep better. What if you got your tonsils out and it decreased the events by half?" "Then I'd still have moderate sleep apnea." He's surprised that I'm still using my APAP and simply doesn't seem to understand just how much better I feel.

Basically the big thing that I see in him is that insomnia is specifically valued in the medical community, and I don't have to tell you about med school. So the idea that doctors, the ones who as a general rule have been conditioned to ignore the importance of their own sleep, would focus on helping people sleep better and see it as important is an interesting Catch-22.

WillSucceed wrote:dsm wrote:

And I do have to say that I am of the opinion that had this report said that the Respironics Auto was the best or had no issues, there would be none of this debate

dsm, I'd be just about the first to bash Respironics, but I don't think that Respironics not being the fav. machine in these studies is the issue at all. The studies are flawed, no matter which flow generator is favoured.

dsm wrote:

RG is basically saying that because the tests can't emulate all human responses the tests are invalid.

dsm... I did not get the impression that RG is saying that the tests are flawed because they can't emulate ALL human responses. It seems to me that she is saying that the tests are flawed because they can't emulate ANY human responses due to the lack of response loop.

dsm wrote:

(I am making one assumption here and that is that you have read this report and thus feel justified in saying what you have about it being flawed. Before I go any further, please do confirm that you read it - thanks )

So you said: "before I go any further..." but then you managed to go on further anyway. OK, you have made your snotty shot, "please do confirm that you have read it." Fine. Do you feel better now?

Yes, I HAVE read these studies and yes, before you suggest it, I'm NOT a respirologist or scientist in any way. I HAVE, however, done research (had to write a thesis based on original research when I completed a Master's degree in 1989, and continue to be involved in research in my workplace. So, to answer your question, while I would not in any way consider myself a "researcher" and I am in no way qualified to suggest how to design a better study regarding APAP machines, I am qualified to look at the studies presented and say that I think they are flawed based on design. If the design is bad, so too is the study.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): APAP

dsm wrote: The companion of that is believing Resmed, Respironics and Puritan Bennett etc: would never publish incorrect or wrong information about their products.

Companionship is great for stimulating conversation and procreating the species, Doug. Associating the activities of independent people and organizations, as if they might safely be grouped together in purpose or motive, is risky generalization---highly risky analysis at best in my opinion.

dsm wrote:Researchers have a valid, perhaps even critical, role in making sure medical products do what their makers claim and this is especially the case in a newish field like CPAP. AutoPaps have been under the spotlight and fairly so. The same will need to be done with each new generation of CPAP.

You'll get no disagreement from me on that statement.

dsm wrote:If the researchers testing is flawed I have no doubt that the medical profession and the manufacturers would be able to publish credible data explaining in a credible fashion why the research is invalid or needs refining. It took years for the R-- algorithms to be accepted as representational patterns useful in respiratory research.

I think your missing the point, Doug. Nobody has ever insinuated those R-value waves are unsuitable as standardized input. Standardized input is needed. I take absolutely no issue whatsoever with those well-designed R-value inputs. But that's where the methodology design ceases to be valid as far as I am concerned.

You are speaking as if standardized input and overall testing methodology are one in the same, Doug. You can devise the world's greatest bricks and still build a methodological structure that is not sound. Regarding this methodology with the grotesquely missing patient (or even simulated) feedback loop: just calculate the experiment's residual AHI scores across all machines, and you will see how far that methodology's results deviate from what patients with any of those machines typically attain.

If that methodology is even implicitly aimed at making overall comparative assessments of each machine's efficacy, then it's just plain-old bad methodology. It fails to encompass key design and even sleep-related trend-based operational aspects of each machine's algorithm. It measures one manufacturer's designed non-responsive (NR) algorithmic routine, then depicts that somewhat esoteric designed response as if it were a comparative failure. Yes, that's one highly flawed methodology toward overall comparison. It's a series of unfortunate and highly misleading "micro measurements" in my honest and completely unbiased opinion.

dsm wrote:I still recall why Ralph Nader came to such prominence in the US

I agree, there's a genuine need in this industry for a Ralph Nader or similarly-minded agency. Hope that person or agency is just as statistically oriented and methodologically driven as Ralph Nader and many other entirely respect-worthy consumer advocacy agencies.

Doug, you saw those highly misleading and sweeping central-apnea Adapt SV marketing statements issued by Resmed. But you weren't around when Respironics made very similar misleading claims about their first Virtuoso APAP. Or when PB first came out with the 420e and marketed it as an entirely promising treatment platform for UARS. Regardless of serious consumer/patient advocacy needs, the methodology currently up for discussion is highly flawed in my opinion. And the need for a good methodology does not validate any one methodology.

All very interesting reading, but can anyone tell me which machine works best for humans?

Rabid 1:
You are da' bomb!!! What a great question! Further, I'd love to know the answer... I'd trot right out and buy the machine!

AND......when all is said and done, the DME is going to give the sleep-deprived patient the cheapest CPAP they can push onto them. May not even have an exhale relief feature (C-Flex or EPR) and definitely not data recording capabilities (unless they're extremely lucky).

So much for theories on which one "gives the best therapy"......

Den

Rabid1 wrote:All very interesting reading, but can anyone tell me which machine works best for humans?

The answer is... "different (APAP) strokes for different (APAP) folks". Each of these machines is guaranteed to have an entirely different set of "patient-individualized" algorithmic strengths and weaknesses. And that is precisely why every possible combination of trial-and-error (related to trialling multiple APAP models) has occurred on the message boards. And that is precisely why every possible patient outcome regarding preferred APAP model has resulted from those individual patient trials as well. That patient-population diversity, regarding both subjective assessment and objective clinical results, is only one of many factors that makes the entire issue of APAP bench-testing a very tough methodological nut to crack IMHO.

But the entirely valid statement of "different (APAP) strokes for different (APAP) folks" has already been presented in this thread by GoofyUT, WillSucceed, Rested Gal, et all. And, of course, that same valid APAP observation has been presented over and over again on all the apnea message boards. It's a very valid statement IMHO. .

-SWS wrote:

Rabid1 wrote:All very interesting reading, but can anyone tell me which machine works best for humans?

The answer is... "different (APAP) strokes for different (APAP) folks". Each of these machines is guaranteed to have an entirely different set of "patient-individualized" algorithmic strengths and weaknesses. And that is precisely why every possible combination of trial-and-error (related to trialling multiple APAP models) has occurred on the message boards. And that is precisely why every possible patient outcome regarding preferred APAP model has resulted from those individual patient trials as well. That patient-population diversity, regarding both subjective assessment and objective clinical results, is only one of many factors that makes the entire issue of APAP bench-testing a very tough methodological nut to crack IMHO.

But the entirely valid statement of "different (APAP) strokes for different (APAP) folks" has already been presented in this thread by GoofyUT, WillSucceed, Rested Gal, et all. And, of course, that same valid APAP observation has been presented over and over again on all the apnea message boards. It's a very valid statement IMHO. .

dsm wrote:

I still recall why Ralph Nader came to such prominence in the US

Cheers D

Ralph Nader, came to such prominence in the US, using unrealistic preaching about the defects of a item that wasn't defective, but different, and required a different method of use. As a car of the time, it was efficent, fun to drive and safe. I owned five over 7 years, I even completely made on into a dune buggy, and changed every system on the car, hand built not off the shelf. I logged 85,000 safe miles on my family Corvair, one trip coast to coast. They are better than the junk on the market for cars today.

Once you get the media involved, and Lawyers and the Government, everyone loses. G.M. couldn't make as much profit on them as the value was too good, so they laid down and let the car die. If I could get a new 64 today, I'd buy two. Jim

Rabid1 wrote:That was my point EXACTLY. When choosing my machine, I took the advice of people who have used several, and went with the consensus. However, I consider that just a good starting point in my quest for perfection.

Oh! Well, welcome to the hoards among us who don't take much stock in the "iron lung" tests.

Goofproof wrote:Ralph Nader, came to such prominence in the US, using unrealistic preaching about...

Agreed. He was a heck of a grandstander. As it turns out, that Corvair he loved to pick on was safe at many speeds! But despite certain questionable "product fatalities", he accomplished some ground-breaking consumer advocacy practices, IMHO.

Goofproof wrote:Ralph Nader, came to such prominence in the US, using unrealistic preaching about...

Agreed. He was a heck of a grandstander. As it turns out, that Corvair he loved to pick on was safe at many speeds! But despite certain questionable "product fatalities", he accomplished some ground-breaking consumer advocacy practices, IMHO.[/quote]

As do many lawyers, not necessarily to the good of mankind. I consider Ralph Nader to be the Jane Fonda of Lawyers. Jim

I didn't know Jane Fonda was a lawyer.

I always considered her to be the CPAP of actresses.