Will CpapTalk.com ever be accepted by Sleep/CPAP Industry?

neversleeps · Post by **neversleeps** » Fri Jul 21, 2006 6:32 pm

Anonymous wrote:b) The views expressed by quite a few of the regular members of this board are exceptionally vitriolic in thier hatred for basically the entire range of healthcare.

c) The paranoia expressed by many regular members of this site I think would be a serious turnoff to any major organization.

Like just about anywhere else on the internet you just have to wade through the oddities to find the nugget of gold you are looking for.

I'd like to respond to that with some nuggets of vitriolic hatred, but I'm just too paranoid.

Snow986176 · Post by **Snow986176** » Fri Jul 21, 2006 6:51 pm

My doctors nurse refered to this site and told me to check it out when she could tell I was nervous about trying the cpap machine. She was like "we hear very good things about the site and for advise and knowledge you should check it out" Im sure my doctors staff is 1 in a million. Just figure I should let you know someone is refering to it.

motherall · Post by **motherall** » Fri Jul 21, 2006 7:19 pm

I believe one reason that the "professionals" abstain from posting here is that people are so sue happy these days. If something said merely in passing resulted in something unfavorable happening to a poster, the pros have a definite liability. We users however can suggest the most off the wall ideas and that is just what they remain. We can suggest in a way that a DME or physician cannot. And actually I would not want them posting here for the reasons mentioned before. Users (or sufferers) are the best source for the nitty gritty of making this work. The pros prescribe, the nice folks here describe. It really works as is and fills the niche that our disorder leaves us. It reminds me of a male gynecologist...he can talk all he wants about PMS, menopause, pregnancy etc. from the book learning standpoint but for realtime info, I'll speak with another woman.

NightHawkeye · Post by **NightHawkeye** » Fri Jul 21, 2006 7:27 pm

Guest wrote: This site is owned by a company (US Expediters) that sells equipment (cpap.com) bills and markets equipment (billmyinsurance.com) and bills and markets equipment specifically to the elderly (cpapforseniors). So it's in direct competition with almost the entire range of care.

Like an oasis in the desert, it is. I'm hoping they expand into other healthcare products, and become the Amazon of the healthcare industry. (Yeah, I gotta admit, I guess now I see what you mean about the other members in the industry not wanting to play with 'em though.)

Guest wrote:The views expressed by quite a few of the regular members of this board are exceptionally vitriolic in thier hatred for basically the entire range of healthcare.

Am I being vitriolic when I talk about the two sleep studies I failed? Is it vitriolic to state that I diagnosed my own sleep apnea and proved it to the sleep doc's satisfaction so that he then wrote me a prescription. I like the doc. He did me a favor. Still, it doesn't change the facts. Would it be better if I didn't mention the circumstances because somebody might interpret it as reflecting negatively on the entire sleep industry? I probably also shouldn't mention that when I had retinal surgery at a major teaching hospital, by the head of the retinal department, that he needlessly severed the corneal nerve and the nerve for the iris. Retina's in great shape though. Great surgery, except that I can't see too well out of that eye any more. That's OK though, because if I saw better, then the double vision caused by the surgery would be more of a problem. I suppose I also shouldn't mention that two weeks prior to the retinal surgery I'd gone to my regular opthalmologist with retinal detachment symptoms. With about a five second look inside the eye, he dismissed it as nothing of concern. Would have saved me a lot of grief if he'd done his job. That's OK though, because he got paid for that five second look inside my eye. I personally like the guy though. I guess that doesn't change the facts either, does it?

Guest wrote: The paranoia expressed by many regular members of this site I think would be a serious turnoff to any major organization.

Would that be the paranoia about DME's not providing adequate equipment, or paranoia about impending price increases of internet CPAP related products?

Regards,
Bill

WNJ · Post by **WNJ** » Fri Jul 21, 2006 7:31 pm

neversleeps wrote:I think they DO consider this a useful site that could help their patients or their customers. So helpful, in fact, they would prefer their patients or customers not know about it. This place is a threat to their very existence. We know how to do everything they don't want their patients or customers to know how to do. We know how to buy things at a much lower cost than they sell things for. We tend to be better educated on OSA than many of them are. They would likely prefer their patients or customers never take charge of their own therapy.

Don't look for their support anytime soon. This place proves DMEs are unnecessary and obsolete.

Well-said, neversleeps!

The ONLY reason I ever found this forum is because the DME to which my doctor faxed my prescription (American HomePatient) made such an awful first impression. (An impression which scarcely improved over the one month I rented their CPAP.) I felt that I was getting the bum’s rush there and decided that I needed to educate myself. I spent several days searching the internet for all information I could find, and this forum was one of the most valuable sources. cpaptalk.com rocks!

Also, I bought my CPAP at cpap.com and will remain a loyal customer for as long as they continue to give me good service at a fair price.

Wayne

wading thru the muck! · Post by **wading thru the muck!** » Fri Jul 21, 2006 8:40 pm

member of competing organization posting as guest wrote:My opinion is that there are many reasons why this site would not be linked to by manufacturers, doctors or dme companies, none of which are particularly nefarious - just plain common sense.

a) This site is owned by a company (US Expediters) that sells equipment (cpap.com) bills and markets equipment (billmyinsurance.com) and bills and markets equipment specifically to the elderly (cpapforseniors). So it's in direct competition with almost the entire range of care. Furthermore, the sites directly state that dme providers provide low-quality care, so any dme company in thier right mind isn't going to link to them.

b) The views expressed by quite a few of the regular members of this board are exceptionally vitriolic in thier hatred for basically the entire range of healthcare. Do you make it a habit when you first meet someone to call up someone else who hates you with a passion and hand the first person the phone going Here! Talk to this person to learn more about me!'.

c) The paranoia expressed by many regular members of this site I think would be a serious turnoff to any major organization. An example would be the other thread where someone asked the question Do you think the companies are sitting around trying to put people out of business just because they don't like them personally and the first answer was yes. Especially when combined with the hatred for the healthcare system at large. Not only does it prevent a lot of regular members from being objective, it also lessons the credibility of those same people in the eyes of a more mainstream entity, i.e. the referenced Sleep Labs, cpap manufacturer, doctor groups and dme stores.

I enjoy this website. I have been coming here since I was diagnosed with Sleep Apnea and have used some of the tips posted here. I think it serves a very good purpose. None of the things I've mentioned are in any way an insult to anyone here. None of it is posted or meant in a negative fashion. There is some quality information to be had here, especially about the more technical aspects of things that are outside the norm such as deconstructing masks for highly specific situations and long-term micro analysis of monitoring software. Like just about anywhere else on the internet you just have to wade through the oddities to find the nugget of gold you are looking for.

That's right... we are all so horrible here that no self-respecting person in the business of helping folks with OSA would ever want to come here.

Guest, don't worry those poor folks you refer to are all big boys and girls... they can take it.

jeepdoctor · Post by **jeepdoctor** » Fri Jul 21, 2006 9:34 pm

I don't give a flip about how this site is accepted by the sleep industry and the medical mafia. I have been coming here less than a month and have 1.) Found a fishing line fix for my Comfortlite 2 nasal interface so that it doesn't leak air all night long, 2.) Got advice on how to enroll in my insurance carrier's on-line EOB access and secure question service, 3.) Found out how much money my insurance carrier and I can save if I buy a CPAP machine instead of renting from Lincare, 4.) Found out that a CSR at my insurance carrier gave me incorrect advice on the need to receive authorization to purchase a CPAP machine in order to be reimbursed, 5.) Found out about the capabilities of the Respironics software package and My Encore freeware and 6.) Provided me with tidbits of useful information which are too numerous to mention.

This site has really accelerated my learning curve and I am extremely grateful to the folks who have taken time to help me. Thanks folks, you're phenominal. As far as Mr. Cowardly Guest is concerned, he can take a hike. Perhaps this site does need registration to limit the likes of Mr. Cowardly Guest. That's the way the Mercedes Owners' Club discussion forums are set up. Anyone can read the forums, but to make a comment, one must be registered.

Guest · Post by **Guest** » Fri Jul 21, 2006 10:32 pm

You know, this is what so many of the people were talking about in several different places both about guest posting and in this thread about this resource being taken seriously by other agencies.
I did nothing but post an opinion. A solicited opinion. I wasn't mean or rude or flaming or nasty about it. I just stated an opinion in a thread asking about opinions.
The first response was neversleeps' mocking comment, the second was nighthawkeye's scarcastic reply, the third was wading thru the muck!'s post blowing my comment way out of proportion trying to make it look silly and then jeepdoctor's outright flaming of my opinion calling me cowardly and telling me I shouldn't even be here.
All because I just calmly stated an opinion - while in the same breath supporting this site!
It's really all very strange. I have to admit not understanding that kind of response.

NightHawkeye · Post by **NightHawkeye** » Fri Jul 21, 2006 10:45 pm

Guest wrote: . . . the second was nighthawkeye's scarcastic reply . . .

Sarcasm? I don't think so. I merely related my own direct experience with the sleep industry professionals and also with other physicians. I don't know why you would even attempt to classify it as either sarcastic or vitriolic. I assure you it is neither.

Guest wrote:All because I just calmly stated an opinion - while in the same breath supporting this site . . .

. . . while also blatantly attacking those of us who post here . . ., as you have also just done again.

Regards,
Bill

wading thru the muck! · Post by **wading thru the muck!** » Fri Jul 21, 2006 11:26 pm

Guest wrote:
"any dme company in their right mind isn't going to link to them (cpaptalk)."

"The views expressed by quite a few of the regular members of this board are exceptionally vitriolic in their hatred for basically the entire range of healthcare."

"The paranoia expressed by many regular members of this site ..."

I guess the guest is right... there were no attacks in that post. ...just "calmly stated an opinion - while in the same breath supporting this site" LOL!

_________________

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

neversleeps · Post by **neversleeps** » Sat Jul 22, 2006 12:27 am

Anonymous wrote:The first response was neversleeps' mocking comment, the second was nighthawkeye's scarcastic reply, the third was wading thru the muck!'s post blowing my comment way out of proportion trying to make it look silly

I'd just like to calmly state it is my opinion that wading thru the muck's post did not blow your comment way out of proportion trying to make it look silly and NightHawkeye's reply was not sarcastic. My comment, on the other hand, was most definitely mocking. Glean whatever nugget of gold you can from that.

In the same breath, I'd like to say how much I support this site.

Thank you.

gulfpearl · Post by **gulfpearl** » Sat Jul 22, 2006 2:13 am

Anonymous wrote:My opinion is that there are many reasons why this site would not be linked to by manufacturers, doctors or dme companies, none of which are particularly nefarious - just plain common sense.

a) This site is owned by a company (US Expediters) that sells equipment (cpap.com) bills and markets equipment (billmyinsurance.com) and bills and markets equipment specifically to the elderly (cpapforseniors). So it's in direct competition with almost the entire range of care. Furthermore, the sites directly state that dme providers provide low-quality care, so any dme company in thier right mind isn't going to link to them.

b) The views expressed by quite a few of the regular members of this board are exceptionally vitriolic in thier hatred for basically the entire range of healthcare. Do you make it a habit when you first meet someone to call up someone else who hates you with a passion and hand the first person the phone going Here! Talk to this person to learn more about me!'.

c) The paranoia expressed by many regular members of this site I think would be a serious turnoff to any major organization. An example would be the other thread where someone asked the question Do you think the companies are sitting around trying to put people out of business just because they don't like them personally and the first answer was yes. Especially when combined with the hatred for the healthcare system at large. Not only does it prevent a lot of regular members from being objective, it also lessons the credibility of those same people in the eyes of a more mainstream entity, i.e. the referenced Sleep Labs, cpap manufacturer, doctor groups and dme stores.

I enjoy this website. I have been coming here since I was diagnosed with Sleep Apnea and have used some of the tips posted here. I think it serves a very good purpose. None of the things I've mentioned are in any way an insult to anyone here. None of it is posted or meant in a negative fashion. There is some quality information to be had here, especially about the more technical aspects of things that are outside the norm such as deconstructing masks for highly specific situations and long-term micro analysis of monitoring software. Like just about anywhere else on the internet you just have to wade through the oddities to find the nugget of gold you are looking for.
Dear Guest
It's not paranoia I for one am tired of paying the high prices DMEs charge & getting the run around by sleep professionals who can't even anwser my basic questions. I have learned so much by this site. If I left it up to my doctor I would still be searching for anwsers. If DMEs or other professionals were running this site I donot think we could be as honest as we are with our replies, everything would be censored toward the opinion of the DME or sleep professional. I am glad this site is the way it is& I hope it will not change.

CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP, DME

billbolton · Post by **billbolton** » Sat Jul 22, 2006 5:01 am

motherall wrote:I believe one reason that the "professionals" abstain from posting here is that people are so sue happy these days. If something said merely in passing resulted in something unfavorable happening to a poster, the pros have a definite liability.

This is really a key point.

I work in the Health Informatics domain from time to time, and from this I know that a lot of what seems like somewhat restrictive behaviour by clinicians, and vendors of medical apparautus, is driven by a mixture of regulatory governance and medical idemnity insurance issues. The reason that both the goverance and idemnity insurance arrangments are there in the first place is because of patient litigation.

I am certainly not defending the medical establishment, just stating the way things actually work for them.

Cheers,

Bill

jeepdoctor · Post by **jeepdoctor** » Sat Jul 22, 2006 7:17 am

Gulfpearl wrote:

“Dear Guest,
It's not paranoia I for one am tired of paying the high prices DMEs charge [u]& getting the run around by sleep professionals who can't even anwser my basic questions.[/u] I have learned so much by this site. If I left it up to my doctor I would still be searching for anwsers. If DMEs or other professionals were running this site I do not think we could be as honest as we are with our replies, everything would be censored toward the opinion of the DME or sleep professional. I am glad this site is the way it is& I hope it will not change.”

Note the underlined, bold sentence.

Here’s what I have experienced with Lincare. The tech told me 1.) That I would not be able to purchase the Respironics Encore software and card reader “It’s for medical professionals only”, 2.) That if I brought my smart card in for reading, that they could not give me the data dump on magnetic media, only a paper printout 3.) That CFlex is the ramp-up function on Respironics CPAPs, 4.) That the CFlex function setting is not user-adjustable, i.e., “Only I can set the CFlex.”, 5.) Would not give me the CPAP setup manual, and 6.) Couldn’t tell me pricing, stating “We don’t know prices here. You would have to call St. Louis for that information.” I.e., they don't want me to know pricing because if I know pricing, I can become an informed shopper and look around for a better price.

For all the above “value-added” services (sounds value-negative to me), my insurance carrier and I are paying $ 1,260.60 rental over 12 months. I am jumping off this rented wagon as soon as I have a written prescription and letter of medical necessity in hand.

completelyhosed · Post by **completelyhosed** » Sat Jul 22, 2006 7:25 am

This is a wild guess, but I seriously doubt that more than a third of one percent of USA cpap patients have ever seen or heard of this site, or any cpap forum. The percent of patients living outside the USA is even lower. We could do more to help and be helped IF we could increase the number of cpap patient visitors.

What can be done to increase awareness of our community and others like it?

Would cpap compliance rates increase proportionally if more patients were aware of sites like this?

Will CpapTalk.com ever be accepted by Sleep/CPAP Industry?

Re: Will CpapTalk.com ever be accepted by Sleep/CPAP Industr

Re: Will CpapTalk.com ever be accepted by Sleep/CPAP Industr

Re: Will CpapTalk.com ever be accepted by Sleep/CPAP Industr

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