Meet the minds behind the S9

[Bob3000]

Ozij, you are tenacious

I note that your only response to my statements is reiteration of your beliefs, and a devaluation of anything not published in peer reviewed journals. You seem to be saying that the only valid data for you to review exists in published peer reviewed studies.
However, you did not base you own therapy solely on what you found in peer reviewed journals, you joined an internet forum.

I am not willing to draw conclusions from a few anecdotal accounts, and I do value peer reviewed studies over hearsay. It doesn't in any way mean that I am not willing to consider anecdotes, such as those on this board that convinced me to try mouth taping, which I've found much more effective than the chinstraps and full-face masks recommended by the medical profession. However, specifically regarding the comparative effectiveness of various aPAP algorithms, I do believe that if a more effective algorithm had been devised, it would have been written up and published, and then flaunted publicly to increase sales. That hasn't happened. I don't conclude that it's impossible for someone to benefit by switching aPAP machines, just that it seems unlikely, and again, yes, I think other variables probably better explain the supposed increased effectiveness of the alternate machine.

But this is all just probabilities. You may very well be correct, but no one has been able to identify what patient characteristics are best matched to what algorithms in order to deliver maximally beneficial xPAP therapy. If and when I see that happen, I will change my mind.

Until more evidence comes along, I consider aPAP to be a 'solved problem'.

[ozij]

Ozij, you are tenacious

Indeed I am. And so are you. And you are still ignoring my main points:

no one has been able to identify what patient characteristics are best matched to what algorithms in order to deliver maximally beneficial xPAP therapy.

This is a fact. I have no argument with that fact, and that is not a postion I took.

The fact you present has nothing to do with supporting your following statement:

Until more evidence comes along, I consider aPAP to be a 'solved problem'.

The only evindence needed to disprove the statement that all cats are black is the observation that one single cat exists in a different color. One single case.

O.

[DreamDiver]

I am not willing to draw conclusions from a few anecdotal accounts, and I do value peer reviewed studies over hearsay. It doesn't in any way mean that I am not willing to consider anecdotes, such as those on this board that convinced me to try mouth taping, which I've found much more effective than the chinstraps and full-face masks recommended by the medical profession. However, specifically regarding the comparative effectiveness of various aPAP algorithms, I do believe that if a more effective algorithm had been devised, it would have been written up and published, and then flaunted publicly to increase sales.

Science is a fickle master. Data can often be manipulated to serve opposing answers with just a few changes in how the data are crunched. A perfect example - AT&T's blue map vs. Verizon's red map. A little spin in either direction and one company is better - more trustworthy - has better coverage - faster coverage - whatever - than the other. But they're on different systems, using different algorithms too. Which one is really better? This is "margarine vs. butter" science. Wait a year, and the data will be skewed in an opposing direction. At some point you have to jump out of the box, stop doing obeisance to the god 'science' and pick a personal preference.

Don't most scientific hypotheses originate from anecdotal evidence?

Isn't the proprietary nature of the algorithms and the machines they're made for part of the problem? You can test one machine against another, but because each machine is entirely different in both algorithm and physical design, you're comparing apples to oranges. Personal preference plays a huge role. There are too many different factors. One person may do better with the algorithm of machine a, but because machine b is quieter, they actually get better therapy (as defined by lower AHI, perhaps) using machine b. In order to be sure your algorithm is better than my algorithm, I'm going to have to share mine with you or vice versa and put them both on the same machine and test the machine with lots of patients. That's like Monsanto sharing genetic germ-plasm patents with Dupont. How likely is that?

Let's say for sake of argument our 'Monsanto' in this instance is Respironics, and that Resmed is our 'Dupont'. They're the two who've beat out other competitors. They see each other at all the industry conferences. They're golfing buddies. If they were 'Coke' and 'Pepsi', they'd be have NASCAR box seats within spitting distance of each other. They have both invested a great deal of research-hours and money in being sure that their algorithm is the best way to go. In order to prove one algorithm is better than the other, one of them would have to go down. They each have too much invested in their own preferences to take the risk of exposing their investors to the possibility that their algorithm is not as good as the main competitor's. Why mess with a good thing? Better to let people wonder than to let investors lose out. The comparison of algorithms is currently held up by political and economic interests - not scientific interest.

It's unlikely there will ever be a peer-reviewed study. We're left with anecdotal evidence. Isn't that where we started in the first place?

[mars]

Hi All

Just watched the video, so here are my comments red hot from the experience.

The video is directed at the Home Care Provider, not us. When the woman talks about us, she refers to us as "them". As does the guy near the end.

The first couple of minutes is pure sales pitch, and concerned with looks and selling points. Ridiculous stuff in the main. All this stuff about how it looks - crazy, irrelevant.

To me, the so-called patient - meaning me - is not of much concern to them. They just want to get across how best to sell it to us.

I take DSM's point - I did not have to look at it, and it was not meant for my eyes. But I could feel somewhat demeaned (if I was the kind of person to feel demeaned, which we all know I am not ) by the almost complete indifference to "them" (meaning us - the patient).

I got the impression that I was just an object, to be emotionally pandered to, as though I was an immature child who needed to be given something "nice" to put on the bedside table. Efficacy in therapy might have had about 10 seconds of a 5 minute video.

As I said, hot off the press. A little incoherent, but what the hell.

I haven't had a rant for a while, so this might as well be it.

cheers

Mars

[ozij]

Looks very coherent to me, Mars.

O.

[snnnark]

Some anecdotal evidence for Bob3000!

I have the same machine as you. For financial reasons I self titrated. The Intellipap is a great little machine for basic OSA however it turns out that I have Complex sleep apnea. The intellipap does respond to hypopneas. So I found myself being blown up like a balloon night after night suffering areophagia and very disturbed sleep. If I had bought one of the other brands the story may well have been different.

So the Intellipap is a great little machine as long as you don't have CompSAS. And I believe that's 15% of the OSA nation so you do the math... I'm too tired

Deon

[jnk]

. . . Until more evidence comes along, I consider aPAP to be a 'solved problem'.

You may consider whatever you like, of course. But I, along with ozij in this thread (as well as a number of people who actually work in the field, as shown by the following), consider the evidence to be that it is NOT a "solved problem."

http://chestjournal.chestpubs.org/conte ... 2/312.full

CHEST August 2006
vol. 130 no. 2 312-314

Autotitrating CPAP
How Shall We Judge Safety and Efficacy of a “Black Box”?
Lee K. Brown, MD, FCCP

" . . . Descriptions of the current algorithms that determine the response of the machine to changes in upper airway mechanics and airflow are not explicitly disseminated, and when requested are said to be proprietary. . . . The measured performance differed between machines in important ways . . . Some machines displayed seemingly aberrant behavior, cycling between extremes of pressure. The authors concluded that manufacturers should disseminate the technical details and algorithms employed by their devices so that physicians could select the appropriate machine according to the needs of each individual patient. Since this is not currently the case, what is the clinician to do, and more importantly, how should we respond to this situation as a community of sleep medicine physicians? The clinician can certainly react by carefully following the symptomatic response of patients started on autotitrating CPAP, assuming that a complaint is present in the first place. Drawbacks to this approach include a noticeable placebo effect that has been demonstrated in randomized controlled trials of CPAP, as well as the frequent lack of a strong correlation between the severity of sleep apnea and any given symptom. At the other end of the spectrum would be the empiricist’s approach of testing the patient in the sleep laboratory during the application of the proposed autotitrating device. This is a technique that I have indeed applied on occasion in patients with complex combinations of sleep-disordered breathing events, and it at least provides the comfort of knowing whether the patient is responding adequately even if one does not exactly know why. An intermediate approach might be to depend on the quantification of respiratory events by the device itself, which is a form of circular reasoning that does not seem very appealing. Rigau and colleagues suggested that a consensus be reached among manufacturers to standardize the signals measured and the algorithms used, a strategy that I am afraid would stifle further research and development and is probably unworkable, given the competitive nature of the industry. I would rather propose a fifth strategy, consisting of the independent, standardized, verifiable testing of each apparatus using techniques such as those reported by Rigau et al and Lofaso et al. Such an approach would be equivalent to the testing of appliances or automobiles by some not-for-profit consumer organizations, and could be performed by one or another of our professional societies or even by collaboration among them. With this information, the clinician could make an informed choice about using a specific autotitrating CPAP generator in each individual clinical situation. Can there be any doubt that our patients would benefit from opening up the black box to the light of day?"

I ask Dr. Brown's, and CHEST's, forgiveness for my quoting such a large chunk of text. It was needed. In my opinion.

[Bob3000]

And you are still ignoring my main points:

The only evindence needed to disprove the statement that all cats are black is the observation that one single cat exists in a different color. One single case.

O.

I don't think we disagree about the facts as much as about their interpretation. I consider a therapy that effectively treats 90% or more of the population to be a solved problem. In medicine, success rates like that are exceedingly rate. You seem to consider the small number of people who might benefit by switching machines and thus apap algorithms to be evidence that xPAP therapy is NOT a solved problem. OK, fair point, but for me to be swayed, I would need to see peer reviewed evidence of some aPAP aglorithms being more effective for some patients, and less so for others. In the meantime, aPAP is solved problem, whereas you remain convinced by the anecdotal evidence and intuitive aspects of your position.

Don't most scientific hypotheses originate from anecdotal evidence?

Yes, anecdotal evidence is hypothesis generating. It is not a basis from which to draw ironclad conclusions that cause you to valiantly defend your position on the internet. It's merely an interesting phenomenon that may - or may not - be a sign of a better version of scientific truth.

Isn't the proprietary nature of the algorithms and the machines they're made for part of the problem? You can test one machine against another, but because each machine is entirely different in both algorithm and physical design, you're comparing apples to oranges. Personal preference plays a huge role. There are too many different factors. One person may do better with the algorithm of machine a, but because machine b is quieter, they actually get better therapy (as defined by lower AHI, perhaps) using machine b. In order to be sure your algorithm is better than my algorithm, I'm going to have to share mine with you or vice versa and put them both on the same machine and test the machine with lots of patients. That's like Monsanto sharing genetic germ-plasm patents with Dupont. How likely is that?
...
It's unlikely there will ever be a peer-reviewed study. We're left with anecdotal evidence. Isn't that where we started in the first place?

The conclusion I'd draw from your post is that, if what you say is true (and that hasn't been demonstrated convincingly), then this whole discussion is a waste of time because no DME or sleep study lets you spend a few nights with each of a half dozen aPAP machines to see which is your favorite, and since there's no way to predict which algorithm might be best for your individual needs, it's just going to be the luck of the draw. Further, this all argues in favor of what I am calling for, which is more randomized controlled clinical trials to sort out this mess, to figure out which algorithms are best for which types of patients, otherwise all that you and O. are arguing for is purely, and ironically, academic.

Some anecdotal evidence for Bob3000!
...
Deon

Excellent hypothesis generating account, Deon. Thanks. This should be studied in a lab and published so that sleep docs can say 'you have mostly apneic events, try the Devilbiss' or 'you have mostly hypopnic events, try the RESMED'. Or even, 'CPAP would be better for you than APAP'.

You may consider whatever you like, of course. But I, along with ozij in this thread, as well as a number of people who actually work in the field, consider the evidence to be that it is NOT a "solved problem."

http://chestjournal.chestpubs.org/conte ... 2/312.full

I ask Dr. Brown's, and CHEST's, forgiveness for my quoting such a large chunk of text. It was needed. In my opinion.

I read the two studies Dr. Brown refers to. One demonstrated that an artificial breather received different responses from different machines (i.e. algorithms). It's good hypothesis generating data, but does not demonstrate clinical significance. The other paper merely showed that a new algorithm was as good as other algorithms in a clinical trial - the conclusion being it was no worse. So one study says nothing clinically but raises interesting questions, the other merely says that one algorithm is as clinically effective as another.

Anecdotal evidence is hypothesis generating and not a solid basis for drawing conclusions. If it's compelling enough for you to want to try a different machine, go for it, but don't expect everyone to agree with you. There are some real shady scams online that claim to cure OSA, and there are always a few people who, whether shills or true believers, go around trying to convince everyone the sham is a legit cure because it worked for them. I am not impressed, and I want to see clinical trials before I change my mind. If I believed in every anecdotal account until proven otherwise, my cousin wouldn't need to take anti-psychotics to stop hallucinating and talking to his bedroom wall, I'd simply instruct him to take a multivitamin and drink some vinegar and he'll be good to go.

==============
In my view, this whole argument is rather irrelevant because (1) IF the anecdotal evidence is suggestive of the truth, and some alorithms are better than others, (2) THEN it will still make no difference because doctors cannot keep switching their patients' aPAP machines or insurance will stop paying, (3) THUS the only solution to this is to perform what I've called for in the first place - randomized, clinical trials to sort out this mess, figure out which patient characteristics are indicators for which aPAP machines/algorithms, and have a scientifically established basis for claiming that some algorithms are better for some patients than others so that patients can be prescribed their ideal algorithm in the first place.

[rested gal]

. . . Until more evidence comes along, I consider aPAP to be a 'solved problem'.

You may consider whatever you like, of course. But I, along with ozij in this thread, as well as a number of people who actually work in the field, consider the evidence to be that it is NOT a "solved problem."

Count me as another who does not consider "autopap" to be a "solved problem."

I'm one of the lucky ones who can turn on just about any autopap (or bilevel or plain CPAP) and get effective treatment. Might take some tweaking, as in when I had to turn off IFL1 in the PB 420E autopap, but having tried a LOT of machines for the heck of it, I've found I can get equally good treatment from any I've used. I suspect that would be the case for most people who have plain vanilla Obstructive Sleep Apnea... that any autopap (set correctly) would treat them well. Most people. Not all.

It's the "not all" population of sleep disordered breathers who might be treated better by one manufacturer's autopap algorithms as opposed to another's. Or by a different type of machine altogether -- all the way from plain CPAP to ASV machines.

[rested gal]

In my view, this whole argument is rather irrelevant because (1) IF the anecdotal evidence is suggestive of the truth, and some alorithms are better than others, (2) THEN it will still make no difference because doctors cannot keep switching their patients' aPAP machines or insurance will stop paying, (3) THUS the only solution to this is to perform what I've called for in the first place - randomized, clinical trials to sort out this mess, figure out which patient characteristics are indicators for which aPAP machines/algorithms, and have a scientifically established basis for claiming that some algorithms are better for some patients than others so that patients can be prescribed their ideal algorithm in the first place.

I don't agree with the first "IF" -- I don't think the evidence is suggestive at all that "some algorithms are better than others." All the evidence I've seen (in particular regarding the bench test studies comparing autopap responses to wave forms from an artificial breathing machine -- breaking the CRUCIAL loop of feedback to the machine from a living, breathing person) is that the algorithms used by the different manufacturers are DIFFERENT. Not that some are better than others. Just different.

I disagree with point (2). It makes no difference at all to insurance (as far as I know) which brand of machine a person receives. All that matters to insurance is that the billing code is for a machine the person qualifies for. The doctor could order any number of swaps for machines within that one billing code, and the DME could keep exchanging machines as often as they want to. Not that either of those entities would have the time, the interest, or (especially the DME) the financial incentive to keep ordering or making machine swaps. But insurance wouldn't stop paying for a machine that was covered by the billing code. For both CPAP and autopap machines, that one billing code is E0601, regardless of which brand, and regardless of whether that's the first machine a person was given or the tenth. The DME cares about that. Insurance doesn't.

Sorry to keep disagreeing, but... about point (3)...

I don't think there is any way (regarding autopaps only) even through randomized clinical trials, to ever "figure out which patient characteristics are indicators for which aPAP machines/algorithms, and have a scientifically established basis for claiming that some algorithms are better for some patients than others"

I don't think the complicated algorithms autopaps must use based on airflow feedback from a sleeping person, can ever be tested in a way that can establish an accurate scientific basis for claiming some APAP algorithms are better for some patients than others. There are just too many changing factors throughout the single night (position + stage of sleep, congestion that may clear or occur during the night, comorbities, leaks, environmentally caused arousals ... the list goes on and on) let alone on consecutive nights.

I do agree with you on this, Bob:

* Even if aPAP algorithms matter for X% of the population, we have no evidence that the engineers who programmed the S9 slacked off because the design team wanted to make the unit sexy. Despite this, the reaction in this thread seems to be that RESMED focused on the wrong stuff. All we're seeing is the marketing strategy, we've no idea what the programmers did or did not focus on.

I also agree with Mars:

The video is directed at the Home Care Provider, not us. When the woman talks about us, she refers to us as "them". As does the guy near the end.

The first couple of minutes is pure sales pitch, and concerned with looks and selling points.

I agree with everything ozij has written in this thread.

[jnk]

Bob,

I hope you don't mind if I tend to lean toward Dr. Brown's overall assessment of the state of affairs instead of your assessment. His view seems to align more closely with what I've read in printed works and in the apnea forums.

I do respect your right to make broad summary assessments. But it is my personal belief that when it comes to the evaluation of research on medical matters, especially ones involving anecdotal evidence, it is usually best to give added weight to the observations of those with the most experience, since they have had opportunity to observe more cases, more anecdotes, if you will. And as you point out, that's all anyone has on this subject.

Here are my personal comments on some of the significant problems that Dr. Brown pointed out and that still exist when it comes to figuring out which APAP will do best for which patients:

Problem 1: "Descriptions of the current algorithms that determine the response of the machine to changes in upper airway mechanics and airflow are not explicitly disseminated." Manufacturers hide their algorithms as best they can to protect what they consider their property. Patients suffer. That is a problem.

Problem 2: "When requested, [the algorithms] are said to be proprietary." Even when asked outright by researches to give specific information, companies will not do so. Doctors and researchers are left in the dark. Patients continue to suffer. That is a problem.

Problem 3: "The measured performance [differs] between machines in important ways." Did you note the word "important"? That makes performance, in some cases, a problem. An important one.

Problem 4: "Some machines displayed seemingly aberrant behavior, cycling between extremes of pressure." This has been observed by doctors in real patients and is sometimes mentioned on apnea boards by patients themselves. These patients do not consider their problem solved. That doesn't make APAPs a bad thing in general. It just makes APAP therapy for some, you guessed it, a problem.

Problem 5: "The technical details and algorithms employed by their devices [are needed] so that physicians could select the appropriate machine according to the needs of each individual patient." This, I believe, is what makes the other problems so significant, since it is why some doctors resent the autos and refuse to suggest them to their patients. The doctors figure that if the companies want to hide their algorithms and fail to give doctors needed info for knowing how certain patients will or will not react, then the doctors will discourage their patients from using one. After all, this is, in the viewpoint of some doctors, tantamount to coming out with a medication and then refusing to disclose the ingredients or the known adverse effects that are possible in interaction with other medications or treatments. This is a problem on top of a problem. It makes some doctors resent PAP therapy altogether. No doc likes manufacturers dictating to him how he practices.

Problem 6: "A noticeable placebo effect . . . has been demonstrated in randomized controlled trials of CPAP. [There is] a frequent lack of a strong correlation between the severity of sleep apnea and any given symptom." As I understand it, these facts would make it difficult to do the type of study you propose. This problem is built into the nature of the beast. The judgments of efficacy with OSA treatment can be subjective, and there would be no easy way to substantiate them. Manufacturers know this, and that is why they refuse to submit information without having control of how the information will be used. The solution, though, is not that we, the patients, should all just assume the problems are "solved". The problems have to be acknowledged to be addressed.

So to my way of thinking, calling the whole matter a "solved problem" only adds to the problem, since it strongly implies there are no more problems to be solved with it. I do not want to be an accomplice in that.

I would go so far as to define the problems with APAPs this way:

1. No one is allowed to know how the machines work or why.
2. No one knows what percentage of the population does well using them.
3. No one knows which patients will benefit the most, or in what way, using an auto, or a particular brand of auto.
4. No one knows how best to set up any particular auto for any particular patient, as in what range to use.
5. When there is a problem with therapy with an auto, no one knows where to look for a possible solution.
6. Manufacturers claim their autos should be run wide open, starting at 4 cm, and that is what most researchers consider "using an auto," despite the increasing anecdotal evidence that running an auto that way is not optimal for many patients.

That being said, I would never discourage anyone from purchasing an auto, since it could always be run in CPAP mode and then used as an auto occasionally for retitration. I am genuinely glad you consider your APAP problems solved. I am glad mine are solved, too, since I do well with an auto. I think APAPs are a great development and very much needed--a therapy saver for some patients with aerophagia troubles or widely varying needs night to night or during any given night. They can save money and lab time as they help patients titrate over time. But I believe, too, that there is a LONG way manufacturers need to go to make APAPs as good as they should be. And I believe that it is particularly important on this board for us to maintain fellow-feeling for those patients who are not well served (1) by APAPs as a whole or (2) by a particular algorithm, and who, frustratingly for them, have no easy way of finding out which of those two situations is actually the one they are experiencing. That, my friend, is a problem, on top of a problem, on top of a problem. In my opinion.

jeff

[rested gal]

Well said, Jeff.

One of the points you brought up probably has the most influence of all on how some studies with autopaps are conducted and on how some doctors prescribe autopap (the few doctors who do)...and then conclude "autopap doesn't work well."

This:

6. Manufacturers claim their autos should be run wide open, starting at 4 cm, and that is what most researchers consider "using an auto," despite the increasing anecdotal evidence that running an auto that way is not optimal for many patients.

[plr66]

I'm trying hard not to comment on how it looks. Slinky makes fun of me for having no taste in my liking the looks of the Respironics M series machines. They look rugged and manly and sturdy and no-nonsense to me, and I like that. The S8s look to me like, well, as someone once posted, overgrown Fisher-Price toys. But I love my S8 for all the reasons Slinky lists and more. So I ignore how it looks and just enjoy what it does.

OT from the substance of this thread, and I've never and will never choose a cpap on the basis of appearance! But I have to agreee with Jeff here, that I think the M series machine has a great appearance. It just kind of blends into a night stand and becomes invisible due to color and shape, where most of the others on the market stand up & shout at you due to the hospital whites & beiges.

[Slinky]

Depends on whether you have light or dark furniture, etc. Our bedroom is a light blue, our bedroom suite light white oak and pewter look metal bed head and footboard. Browns, beiges, greys and blues for curtains, blinds and bedding. A bit of copper thrown in here and there for accent. Black is YUCK!, black is for the mortuary.

[plr66]

Depends on whether you have light or dark furniture, etc. Our bedroom is a light blue, our bedroom suite light white oak and pewter look metal bed head and footboard. Browns, beiges, greys and blues for curtains, blinds and bedding. A bit of copper thrown in here and there for accent. Black is YUCK!, black is for the mortuary.

Whew, Slinky, you've got some energy behind that!