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

completelyhosed · Post by **completelyhosed** » Fri Jul 21, 2006 2:13 pm

This forum is considered by many to be THE place where those who know cpap help those who have questions. It is further assumed by the cpaptalk community that the information shared is of considerable value. There are thousands of posts that indicate that lives have been changed for the good. Many of you have contributed countless hours or research and writing to this community. Some believe it enriches all who participate. Do you think this site really makes an impact on the sleep/cpap industry? They have ignored it and us.

Allow me to present my case.

First some absolute facts to provide clarity to the discussion:

This site began in August 2004. As of this post date it is #1 and #2 on Google search and #1 on Yahoo search for the term "cpap forum". It has more "hits" per month than any pure cpap message board. It has more posts per day than any pure cpap message board. This site is covered with links to cpap seller's and cpap manufacturer's website.

After considering the above facts and a serious look at popular cpap forums, it would be reasonable to conclude that this is the #1 CPAP Patient Support Website on the Planet.

Second set of facts. These I cannot be absolutely sure of, but, I have searched diligently.

There are a total of ONE Sleep Laboratory in the world linking to this site. Rockymountainsleep.com

There is a total of ONE CPAP manufacturer linking to this site. Breathex.com ( the new kid on the block).

ZERO doctors and physician groups link to this site.

ZERO DME (brick and mortar stores) link to this site.

Talkaboutsleep.com is the only internet retailers site that has links to this site (in posted messages only).

ZERO articles in ANY health related paper, magazine, or journal or their websites about this website. (My research I admit has not be up to the task of absolutely verifying this.)

Conclusions: Those who have power in the sleep/cpap industry do not support or value cpaptalk.com even if it is the largest cpap forum. They do not consider it a useful site that could help their patients or their customers. It is time for cpaptalk.com to evaluate itself, in light of these truths.

Questions: What, if anything can be done to do a better job for visitors to this forum? Will patients ever have any kind of a voice in this industry? Why is cpaptalk.com being ignored by the industry? Can we do anything to win the trust of the sleep/cpap industry? Why have we not earned it yet?

MandoJohnny · Post by **MandoJohnny** » Fri Jul 21, 2006 2:39 pm

I think doctors and other providers don't get involved for a few reasons:

1) This site is associated with a particular online equipment provider. A doctor or manufacturer may feel that is an inappropriate conflict of interest and a DME or retailer may feel that it would only help the competition.

2) Doctors may feel that while there are a lot of patient opinions expressed here, there is nothing presented here that settles any scientific questions, which is what doctors are all about.

3) If I were a doctor, DME or any other professional, I would be put off by some of the BS that goes on here and I would be cautious that if I did express my professional opinion, I would be opened up to attacks by the "Peanut Gallery." For instance, if I were ResMed, I would stay way clear. If I were another manufacturer, I would worry about being the next ResMed on the forum.
So all around, if I were a professional dealing with apnea , I would not see this forum as a good place for me to be. That doesn't mean it is a bad forum, it's just a forum for users, not professionals. It may be better that it is.

NightHawkeye · Post by **NightHawkeye** » Fri Jul 21, 2006 2:45 pm

completelyhosed wrote:Conclusions: Those who have power in the sleep/cpap industry do not support or value cpaptalk.com even if it is the largest cpap forum. They do not consider it a useful site that could help their patients or their customers.

I'm following you so far, completelyhosed.

completelyhosed wrote:It is time for cpaptalk.com to evaluate itself, in light of these truths.

Huh? How did you reach this conclusion? Cpaptalk is the one forum which works. You already said that. Cpaptalk is not accepted by the industry for the same reason that many revolutionary breakthroughs are not accepted, those in the industry are too invested in the status quo. It's that simple.

completelyhosed wrote:Questions: What, if anything can be done to do a better job for visitors to this forum? Will patients ever have any kind of a voice in this industry? Why is cpaptalk.com being ignored by the industry? Can we do anything to win the trust of the sleep/cpap industry? Why have we not earned it yet?

The sleep industry has to change, and will change. In many respects the genie is already out of the bottle. It is not incumbent on cpaptalk to change to the whims of the industry. The industry needs to change to better serve the patients. Let the ResMed's and dysfunctional DME's die out and the others will eventually figure it out.

Regards,
Bill

Wulfman · Post by **Wulfman** » Fri Jul 21, 2006 2:47 pm

As I was reading your post, it seemed that from the nature of your questions, you sound like you're part of CPAP.COM or CPAPTALK.COM. (which is fine.....just trying to figure out how to proceed with my answers....if I have any)

I was getting ready to ask "What can WE do to help?"......but then you posed the question(s) from your perspective.
I think that on one hand (which may hold the money), the other forums SEEM to be sponsored (to some degree) by the manufacturers. I don't get that impression from this entity. Maybe it's the "you kiss mine and I'll kiss yours" situation in dealing with the governing bodies that decide where the "respect" gets to go. I don't know.......

Hopefully this thread will lead to some brainstorming that will answer your questions.

Best wishes,

Den

Lurch · Post by **Lurch** » Fri Jul 21, 2006 3:23 pm

completelyhosed wrote:
ZERO articles in ANY health related paper, magazine, or journal or their websites about this website. (My research I admit has not be up to the task of absolutely verifying this.)
________________

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

I love this site because it has helped me so much in the startup phase of my cpap therapy. If the popular media begins to run articles about this site, it will quickly be destroyed.

neversleeps · Post by **neversleeps** » Fri Jul 21, 2006 3:56 pm

completelyhosed wrote:Conclusions: Those who have power in the sleep/cpap industry do not support or value cpaptalk.com even if it is the largest cpap forum. They do not consider it a useful site that could help their patients or their customers. It is time for cpaptalk.com to evaluate itself, in light of these truths.

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.

communilink · Post by **communilink** » Fri Jul 21, 2006 4:24 pm

One thought on this topic is that what was the original purpose of this forum?

To become a internationally reknown source of Industry related news and marketing materials were very little is done to actually help the individuals who actually post here.

Or was it to become the best place for those of us who actually have this condition to talk with each other and help each other with what actually has been proven to work because it was tried by someone here.

Personally I prefer the second, and don't really care if this is where marketing information is gathered and spread.

This site has provided me with more information and ideas and successful tips then any DME or equipment manufacturer

jeepdoctor · Post by **jeepdoctor** » Fri Jul 21, 2006 4:35 pm

Here's something to consider. I had a sleep study and a titration study done at the local hospital. The hospital staff and the techs did the work, including the cover page that was attached to the four or five pages of data. The seep doc signed the cover pages, probably spending all of a minute or two per summary. The sleep doc billed my insurance company about $ 400 per signature, which is outrageous. His involvement added no value to my studies.

Fortunately, my insurance carrier only accepted a small fraction of his billing as a reasonable charge. Does anyone wonder why health care costs so much?

Bookbear · Post by **Bookbear** » Fri Jul 21, 2006 4:55 pm

communilink wrote: Or was it to become the best place for those of us who actually have this condition to talk with each other and help each other with what actually has been proven to work because it was tried by someone here.

Personally I prefer the second,

I agree with Communilink here.... The true value of this site is the wide range of experience represented by people who have actually gone through the trials of OSA. I would only add the phrase "...for them" to the statement '...proven to work...' since people vary so much and what may work or be true for one or several may not work or be true for many others.

Offerocker · Post by **Offerocker** » Fri Jul 21, 2006 5:02 pm

MandoJohnny wrote:I think doctors and other providers don't get involved for a few reasons:

........3) If I were a doctor, DME or any other professional, I would be put off by some of the BS that goes on here and I would be cautious that if I did express my professional opinion, I would be opened up to attacks by the "Peanut Gallery.

...Hard to argue this point!

Goofproof · Post by **Goofproof** » Fri Jul 21, 2006 5:07 pm

completelyhosed, This site doesn't exist with the favor of Sleep Drctors or DME, It exists to fill the void, in lack of correct treatment by the Doctors and DMEs. if the site was run by them, they would change what was allowed to be said according to the spin they wanted. Here we can tell the truth as we see it and if we are wrong be shouted down by our own population or explain our case it we can. On other sites, you toe the line or your out.

We don't care if we are #1, we are here to get the best help we can, and share what we have seen work. That's what this forum is about. Jim

_________________

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

rested gal · Post by **rested gal** » Fri Jul 21, 2006 5:14 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.

I think you nailed it, neversleeps.

snork1 · Post by **snork1** » Fri Jul 21, 2006 5:55 pm

I am happy with this site the way it is!!!!!!!!!!!!!

Guest · Post by **Guest** » Fri Jul 21, 2006 6:08 pm

Goofproof wrote:completelyhosed, This site doesn't exist with the favor of Sleep Drctors or DME, It exists to fill the void, in lack of correct treatment by the Doctors and DMEs.

Bingo!

Guest · Post by **Guest** » Fri Jul 21, 2006 6:15 pm

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.

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

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

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