It seems to me that the AWAKE groups are outdated for two reasons:
1. The need factor when comparing benefit vs. cost in effort and time of attendance at metings.
This is based on my understanding that AWAKE members *physically* meet to discuss OSA. With current technology being as good as it is, and with the tremedously successful OSA forums currently operating on the Internet, HOW MANY PEOPLE WOULD REALLY REGULARLY ATTEND MEETINGS?
Sure, not all OSA people use computers, but, IMHO, those who do use computers would probably make up 85% of the regular attenders at an AWAKE meeting.
2. The movtivation factor for OSA people to physically meet is no where as great as with "addictive substance" type groups, such as alcoholism, drug addiction, food addiction, etc. OSA is not an addictive type disease or problem. It is programs for addictive problems that benefit greatly from physcal and very personal contact with others.
We apnea people can get all our questions answered from a base of thousands of members and, at least in my opinion, we do not require the support of *physical* attendance and personal contact type of support as do 12 step programs.
If AWAKE members do not meet together physically, what other meaningful reasons exist for particpating in an AWAKE program?
Am really interested in your thughts on this.
Andy
This post is partially in reaspone to these previous threads:
Jun 15, 2005 subject: Did we really need another forum???
viewtopic.php?t=3270
viewtopic.php?t=4252
Are AWAKE groups outdated?
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Maskedmechanic
Hello Andy,
I found your post to me most interesting. You have listed reasons favoring internet support. I agree. It is however difficult for me to say that ATTENDED apnea patient support groups are completely obsolete. Here is a list of every patient support reason I can think of to keep them alive:
1. Those who will not use the internet or those who do not think to look on the internet for support obviously are not visiting an internet support group.
2. An ATTENDED patient support group has a greater reach that internet sites. I hope to be wrong, but I can't say that many patients are being referred to cpaptalk by doctors or sleep lab employees (please post if you were!).
3. Doctors and sleep lab directors are active at ATTENDED support groups. They seem strangely absent from internet patient support groups. Perhaps they are missing from the internet. Perhaps they like to remain unknown. Perhaps they feel threatened by the internet. (Docs, we would love to hear from you.).
4. If the right support is available at an ATTENDED support group, machine pressure and sound can be checked and corrected. Filters, masks, etc can be procured.
5. It is always good to actually see and directly talk to other people. The internet is getting better at this but has a long way to go.. Cpaptalk has pictures of some of us and we all like that.
6. Some do not trust the internet. They prefer to trust professionals they can see. It does take some knowledge to sort out truth from error on internet support forums.
All this being said, I personally would rather be on cpaptalk.com than attending the typical ATTENDED group.
Maskedmechanic
I found your post to me most interesting. You have listed reasons favoring internet support. I agree. It is however difficult for me to say that ATTENDED apnea patient support groups are completely obsolete. Here is a list of every patient support reason I can think of to keep them alive:
1. Those who will not use the internet or those who do not think to look on the internet for support obviously are not visiting an internet support group.
2. An ATTENDED patient support group has a greater reach that internet sites. I hope to be wrong, but I can't say that many patients are being referred to cpaptalk by doctors or sleep lab employees (please post if you were!).
3. Doctors and sleep lab directors are active at ATTENDED support groups. They seem strangely absent from internet patient support groups. Perhaps they are missing from the internet. Perhaps they like to remain unknown. Perhaps they feel threatened by the internet. (Docs, we would love to hear from you.).
4. If the right support is available at an ATTENDED support group, machine pressure and sound can be checked and corrected. Filters, masks, etc can be procured.
5. It is always good to actually see and directly talk to other people. The internet is getting better at this but has a long way to go.. Cpaptalk has pictures of some of us and we all like that.
6. Some do not trust the internet. They prefer to trust professionals they can see. It does take some knowledge to sort out truth from error on internet support forums.
All this being said, I personally would rather be on cpaptalk.com than attending the typical ATTENDED group.
Maskedmechanic
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wading thru the muck!
- Posts: 2799
- Joined: Tue Oct 19, 2004 11:42 am
Andy,
Some AWAKE groups may be 50% internet active but I think many are more like 5% to 10%. My feeling is that we are talking about two rather large groups with the same goals but very little opportunity to relate with each other. Both support formats have their benefits and shortcomings.
The big problem with linking these two support communities is that for the most part the AWAKE groups are supported by the traditional DME/Sleep Lab industry and for the most part the online support communities are supported by online equipment providers. Whether they want to admit it or not, the American Sleep Apnea Association (ASAA) which charters the AWAKE groups feels they owe their allegiance to the DME/Sleep Lab industry and know that this will be threatened if they are seen to be cooperating in any way with the online providers.
Some AWAKE groups may be 50% internet active but I think many are more like 5% to 10%. My feeling is that we are talking about two rather large groups with the same goals but very little opportunity to relate with each other. Both support formats have their benefits and shortcomings.
The big problem with linking these two support communities is that for the most part the AWAKE groups are supported by the traditional DME/Sleep Lab industry and for the most part the online support communities are supported by online equipment providers. Whether they want to admit it or not, the American Sleep Apnea Association (ASAA) which charters the AWAKE groups feels they owe their allegiance to the DME/Sleep Lab industry and know that this will be threatened if they are seen to be cooperating in any way with the online providers.
Sincerely,
wading thru the muck of the sleep study/DME/Insurance money pit!
wading thru the muck of the sleep study/DME/Insurance money pit!
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luckylinda
- Posts: 78
- Joined: Sat Feb 12, 2005 10:01 pm
- Location: Northern IL
Maskedmechanic wrote:Hello Andy,
I found your post to me most interesting. You have listed reasons favoring internet support. I agree. It is however difficult for me to say that ATTENDED apnea patient support groups are completely obsolete. Here is a list of every patient support reason I can think of to keep them alive:
1. Those who will not use the internet or those who do not think to look on the internet for support obviously are not visiting an internet support group.
2. An ATTENDED patient support group has a greater reach that internet sites. I hope to be wrong, but I can't say that many patients are being referred to cpaptalk by doctors or sleep lab employees (please post if you were!).
3. Doctors and sleep lab directors are active at ATTENDED support groups. They seem strangely absent from internet patient support groups. Perhaps they are missing from the internet. Perhaps they like to remain unknown. Perhaps they feel threatened by the internet. (Docs, we would love to hear from you.).
4. If the right support is available at an ATTENDED support group, machine pressure and sound can be checked and corrected. Filters, masks, etc can be procured.
5. It is always good to actually see and directly talk to other people. The internet is getting better at this but has a long way to go.. Cpaptalk has pictures of some of us and we all like that.
6. Some do not trust the internet. They prefer to trust professionals they can see. It does take some knowledge to sort out truth from error on internet support forums.
All this being said, I personally would rather be on cpaptalk.com than attending the typical ATTENDED group.
Maskedmechanic
I do not believe that such groups are totally obsolete.
1. Obviously not every apnea patient is on the internet. So the need would be there for those people.
2.I do not agree that attended support groups have a greater reach than internet support groups. In fact, I believe the opposite is true.
3. As doctors and sleep clinic directors are frequently the cause of much lack of imparting knowledge to their patients, this further agues for a better need met by an internet support group.
4. I can contact my DME for adjustments to my machine if I feel it might not be working properly. That is why we pay the exorbitant prices of insurance regulated requirements using local DMEs.
5. Yes, it can be valuable to see and talk to people, but I cannot believe that the average apnea support group can even begin to have the variety of experience and expertise that I find on this board.
6. I do not believe that "professionals" are present at all local support meetings. In addition to needing knowledge to sort out information from the internet, it would be necessary to use the same careful evaluation of information learned at a local support meeting.
In addition to the reasons listed above, I can come here whenever I feel the need to question, to vent, and to learn. I can do it on MY schedule and not monthly or bimonthly like an in person group. I am so grateful for this forum and the easily accessibility of education, and support that I find no need to go elsewhere.
Lucky Linda
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Maskedmechanic
Wading said "Whether they want to admit it or not, the American Sleep Apnea Association (ASAA) which charters the AWAKE groups feels they owe their allegiance to the DME/Sleep Lab industry and know that this will be threatened if they are seen to be cooperating in any way with the online providers."
If what you say is true (I fear it is) then the ASAA is making a profound shift in direction that is NOT in the interest of patients. Perhaps they will correct course as they move forward.
Maskedmechanic
If what you say is true (I fear it is) then the ASAA is making a profound shift in direction that is NOT in the interest of patients. Perhaps they will correct course as they move forward.
Maskedmechanic
Forgive me for interjecting (since I'm currently a volunteer with the ASAA, some might say the enemy...lol).
I couldn't resist saying how interesting these comments are to me. I'm in the middle of trying to start up an AWAKE group in my area. If I'm successful remains to be seen. But your comments are helpful to me.
Personally, I don't really care if this support group is an AWAKE group or not. I see the affiliation more as a means to network with other similar groups via newsletters and other means. We could do it with or without the AWAKE affiliation. I don't see the ASAA as being an influence on us at all, in my humble biased opinion. The point is it will be a support group. We'll run the show ourselves. Maybe not all of them work that way. Some groups are organized by sleep labs or DMEs. And btw, the ASAA does not dictate who runs the support group, they only make suggestions. Frankly, it's hard to get volunteers to organize such a thing. But regardless of who runs it, the emphasis is on support, just like these discussion boards.
But I agree the support group method is not everything. OSA sufferers need support and they need it NOW, not just once a month or whatever. And as mentioned, not everyone has access or wants access to the internet. And I agree that the internet probably reaches more people. I feel the need is for a multiple-source approach. We need all of it -- support groups, internet, and more. And the support groups could do more to reach out, such as provide buddy systems, phone contact systems, so people have someone they can call locally when they have a problem or a concern. Unfortunately, support varies from place to place. The more means of providing whatever support, the better, IMHO.
But I also look at these support groups, AWAKE or otherwise, as a form of advocacy. Make those doctors, sleep labs, DMEs, etc., yes, even the ASAA, answer our questions, put them on the spot, make them know we are the ones they work for.
But more and more sleep apneacs need to get involved. You can't depend on the medical community, the DMEs, the insurance industry, or even the ASAA to provide us with all of our support. Every major advocacy organization depends on the efforts of those afflicted or affected. I think of something like MADD -- where would that organization be if it weren't for those affected and concerned about drunk driving?
Sorry, but I thought your comments were interesting, and they've given me a lot to think about.
Linda
I couldn't resist saying how interesting these comments are to me. I'm in the middle of trying to start up an AWAKE group in my area. If I'm successful remains to be seen. But your comments are helpful to me.
Personally, I don't really care if this support group is an AWAKE group or not. I see the affiliation more as a means to network with other similar groups via newsletters and other means. We could do it with or without the AWAKE affiliation. I don't see the ASAA as being an influence on us at all, in my humble biased opinion. The point is it will be a support group. We'll run the show ourselves. Maybe not all of them work that way. Some groups are organized by sleep labs or DMEs. And btw, the ASAA does not dictate who runs the support group, they only make suggestions. Frankly, it's hard to get volunteers to organize such a thing. But regardless of who runs it, the emphasis is on support, just like these discussion boards.
But I agree the support group method is not everything. OSA sufferers need support and they need it NOW, not just once a month or whatever. And as mentioned, not everyone has access or wants access to the internet. And I agree that the internet probably reaches more people. I feel the need is for a multiple-source approach. We need all of it -- support groups, internet, and more. And the support groups could do more to reach out, such as provide buddy systems, phone contact systems, so people have someone they can call locally when they have a problem or a concern. Unfortunately, support varies from place to place. The more means of providing whatever support, the better, IMHO.
But I also look at these support groups, AWAKE or otherwise, as a form of advocacy. Make those doctors, sleep labs, DMEs, etc., yes, even the ASAA, answer our questions, put them on the spot, make them know we are the ones they work for.
But more and more sleep apneacs need to get involved. You can't depend on the medical community, the DMEs, the insurance industry, or even the ASAA to provide us with all of our support. Every major advocacy organization depends on the efforts of those afflicted or affected. I think of something like MADD -- where would that organization be if it weren't for those affected and concerned about drunk driving?
Sorry, but I thought your comments were interesting, and they've given me a lot to think about.
Linda
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Guest
Thank you for the interesting posts. As a lurker, this question seems to have been bubbling below the surface for a while.
I think that while the internet has more reach, the people who need the help most are walking into DMEs and they are the ones who may never know of cpaptalk and may never hear of what the internet offers to CPAP people in support and products.
Also, Linda, what about the ASAA teaming up with cpaptalk for the "best of both worlds"? If its all about support, why wouldn't the ASAA come running to places like ours?
I think that while the internet has more reach, the people who need the help most are walking into DMEs and they are the ones who may never know of cpaptalk and may never hear of what the internet offers to CPAP people in support and products.
Also, Linda, what about the ASAA teaming up with cpaptalk for the "best of both worlds"? If its all about support, why wouldn't the ASAA come running to places like ours?
Hi Guest,Anonymous wrote:Thank you for the interesting posts. As a lurker, this question seems to have been bubbling below the surface for a while.
I think that while the internet has more reach, the people who need the help most are walking into DMEs and they are the ones who may never know of cpaptalk and may never hear of what the internet offers to CPAP people in support and products.
Also, Linda, what about the ASAA teaming up with cpaptalk for the "best of both worlds"? If its all about support, why wouldn't the ASAA come running to places like ours?
It's hard for me to speak for the ASAA, for I'm a volunteer. (cop out, huh. lol) But I'll try. Keep in mind, this is only my interpretation.
Issues of being equitable and non-partial to for-profits:
The ASAA wanted to do more (and us volunteers felt they should). But as a legal nonprofit for sleep apnea, there's a kind of duty to try (try, at least) to be as fair and equitable with dealing with for-profit entities including boards, DMEs, etc. Now, some say there's the issue of DMEs, since sponsorship to the ASAA includes most of the big cpap manufacturers in addition to other financial sources, but all national nonprofits survive on sponsorship which includes corporate sponsorship.
I think the ASAA felt they should have their own forum in order to be as independent as possible. But that doesn't mean the ASAA doesn't point people in the direction of the online forums such as cpaptalk. On the regular ASAA website, they've long listed online forums as sources of help. I'm a so-called moderator there, but I'm often pointing people to online DMEs and other discussion boards. They draw the line at allowing links directly to for-profit sites. But we encourage people to use online providers and forums and they are mentioned.
I suppose the ASAA could have "teamed up" to assist these forums without creating one of their own. Personally, I feel that would have been difficult, for in addition to the big popular forums, there are lots of others. They would feel bound to "run" to all of them.
An AWAKE tool:
Also, keep in mind the ASAA was looking at having their forum as an additional tool for the AWAKE groups and their coordinators. That success still remains to be seen, but that was one big motivation.
Resource Information:
But there's a bigger reason, one that I personally felt strongly about. I feel that as a national nonprofit solely for sleep apnea, the ASAA should be committed to being a source for as much information about sleep apnea as possible. Their regular website is OK, but frankly, it isn't enough. And while the other forums have some terrific information, we wanted more flexibility in improving this. Between you and me, I personally want to see their online resources be expanded and organized better, so that eventually, all forums (or any site) can link to the same information. There is a wish and a goal to help the forums better, but that's my reason for being involved.
Also, I felt that there might be a hesitancy by professionals from the sleep apnea medical field (respiratory therapists, techs, or even physicians) as well as from the educational community to frequent the for-profit forums. And we're seeing some interaction of this type.
ASAA visibility:
The ASAA simply isn't out there doing what it needs to be doing. Those of us involved in the ASAA forum felt it was one means of letting people know they exist. The ASAA is not as big as you think it is. That was a surprise to me. They should be out there being a spokesman for sleep apnea, just as other associations do it for other conditions, like cancer, diabetes, etc.
Ultimately we want everyone to "come running" to these forums. The use of yet another forum may or not be the best approach. But it was the quickest, easiest, and cheapest way for the ASAA to try and accomplish some of their goals. Cpaptalk has been very supportive and understanding of the ASAA forum, and I'm always singing their praises and encouraging people to use these forums. I've sent lots of people to here. Ours may be stuffy, and cpaptalk's more personable. Who knows. In one sense, we are teaming up, but I do understand your concern.
Shoot, I never intended to be getting into all of this. Remember folks, it's "Guest's" fault. lol
Linda
The best way....
Hi all!
I'm also writing from the enemy camp, part of that big ugly money-making industrial complex, which I simply call the Sleep Lab. Just a couple of quick points, without being too windy:
Let's not condemn an entire group, profession, whatever because we're still talking about individuals, and there's plenty of well-intentioned, motivated people in any organization whether it be a sleep lab, DME company or internet forum.
The internet forums are a great source of support. Tons of info, instant answers, some lay people here are better than the so-called pros.
But I run a support group, we average 25 people every month, and some folks never miss a meeting, they look forward to them, virtually depend on them for support, guidance and interaction. It, too, is a great source of info.
But do you hear what you're saying? "sitting in front of a computer is a far better way to get support for our problems." Gee, ain't technology great.
I'll split the difference. ANY support is good support. Take whatever you can get, whenever you can get it.
I will throw in one thing about internet support. Some of the "answers" I see here are like gonzo. Just make sure you read the disclaimer at the bottom. One of these days somebody's really gonna get hurt.
But you're missing the big picture. These groups got a few thousand users, and an awful lot of them are transients. But that's a drop in the bucket compared with the overall incidence of sleep apnea. Anything that can be done to help identify and treat these people is a good idea.
And finally, the biggest problem in sleep apnea (or certainly #2 anyway) is compliance with therapy. 30% to 50% of people who NEED to wear CPAP don't. Motivated people will find some way to get the info, internet, library, friend, support group, whatever. People who aren't, won't. Period. As part of out program, we call every one of our CPAP patients every month to see how they're doing and make sure they got and are using their CPAP until they tell us to get lost or don't return our calls 6 times. Yes, that's a lot of calls. But that's the real problem in sleep apnea treatment. That's the group we need to address.
What are you guys doing to help?
deltadave
_________________
CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP, DME
I'm also writing from the enemy camp, part of that big ugly money-making industrial complex, which I simply call the Sleep Lab. Just a couple of quick points, without being too windy:
Let's not condemn an entire group, profession, whatever because we're still talking about individuals, and there's plenty of well-intentioned, motivated people in any organization whether it be a sleep lab, DME company or internet forum.
The internet forums are a great source of support. Tons of info, instant answers, some lay people here are better than the so-called pros.
But I run a support group, we average 25 people every month, and some folks never miss a meeting, they look forward to them, virtually depend on them for support, guidance and interaction. It, too, is a great source of info.
But do you hear what you're saying? "sitting in front of a computer is a far better way to get support for our problems." Gee, ain't technology great.
I'll split the difference. ANY support is good support. Take whatever you can get, whenever you can get it.
I will throw in one thing about internet support. Some of the "answers" I see here are like gonzo. Just make sure you read the disclaimer at the bottom. One of these days somebody's really gonna get hurt.
But you're missing the big picture. These groups got a few thousand users, and an awful lot of them are transients. But that's a drop in the bucket compared with the overall incidence of sleep apnea. Anything that can be done to help identify and treat these people is a good idea.
And finally, the biggest problem in sleep apnea (or certainly #2 anyway) is compliance with therapy. 30% to 50% of people who NEED to wear CPAP don't. Motivated people will find some way to get the info, internet, library, friend, support group, whatever. People who aren't, won't. Period. As part of out program, we call every one of our CPAP patients every month to see how they're doing and make sure they got and are using their CPAP until they tell us to get lost or don't return our calls 6 times. Yes, that's a lot of calls. But that's the real problem in sleep apnea treatment. That's the group we need to address.
What are you guys doing to help?
deltadave
_________________
CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP, DME
...other than food...
Hi all - especially Mikeus and Linda Duyer,
I agree that any support for OSA patients is good. And I agree that *attended* support groups are not totally obsolete. Some OSA patients are bound to attend a support group, especially if they have no computer and/or lack other things to do - But not many.
MY point is rather than expend much personal time, personal effort, and donated money, would it not be better to learn our lesson from history? OSA support groups like AWAKE have, in the vast majority of cases, failed! And also from history (current history), online support and discussion groups are a huge success! No one can argue those two points. Tens of thousands of OSA people have benefited from the online sites.
Alcoholism has been with us for thousands of years. Yet, Alochol Annonymous did not start until 1935 (the year I was born). OSA has been with us a long time but was not medically recognized until the 1980s. Yet another reason that AA groups are extremely successful and OSA groups like AWAKE have almost always failed. Need recognition and acceptance.
My suggestions are not for all time in the future. But, initally, if ASAA truly wants to increase its efforts to support OSA patients, IMHO, ASAA
should devote its time, efforts and donated money to what currently is by far the most successful platform.
Perhaps Linda, Mike, ASAA and others have been influenced by the spectacular success of groups such as AA, NA, OA, SexA, etc. Please, bear in mind these are groups for *addicted* people. Addicted people will and do attend two, three or even seven meetings every WEEK simply because they *absolutely need* one-on-one, face to face personal support and encouragement. A place to meet someone they can phone at 4AM and be well received.
>>That is not the need of the OSA patient, and hence, the motivation factor to reguarlary *attend* a meeting is not critical nor even present.<<
The above is THE reason ASAA, Mike, Linda and others should, IMHO, work to get the national organization(s) like ASAA to openly and actively support the online OSA discussion and support groups!
For-Profit or Non-Profit. Makes no difference. The national organizations for AA, NA etc., along with caring doctors, openly and actively support the for-profit Recovery Centers as well as meetings of AA, NA, etc. WHY CAN'T ASAA DO THE SAME?
Mike and Linda and Others: Please use your efforts to convince ASAA that the RIGHT AND PROPER help to OSA patients lies in their active support of the current online discussion and support sites.
Thanks for listening, Andy
I agree that any support for OSA patients is good. And I agree that *attended* support groups are not totally obsolete. Some OSA patients are bound to attend a support group, especially if they have no computer and/or lack other things to do - But not many.
MY point is rather than expend much personal time, personal effort, and donated money, would it not be better to learn our lesson from history? OSA support groups like AWAKE have, in the vast majority of cases, failed! And also from history (current history), online support and discussion groups are a huge success! No one can argue those two points. Tens of thousands of OSA people have benefited from the online sites.
Alcoholism has been with us for thousands of years. Yet, Alochol Annonymous did not start until 1935 (the year I was born). OSA has been with us a long time but was not medically recognized until the 1980s. Yet another reason that AA groups are extremely successful and OSA groups like AWAKE have almost always failed. Need recognition and acceptance.
My suggestions are not for all time in the future. But, initally, if ASAA truly wants to increase its efforts to support OSA patients, IMHO, ASAA
should devote its time, efforts and donated money to what currently is by far the most successful platform.
Perhaps Linda, Mike, ASAA and others have been influenced by the spectacular success of groups such as AA, NA, OA, SexA, etc. Please, bear in mind these are groups for *addicted* people. Addicted people will and do attend two, three or even seven meetings every WEEK simply because they *absolutely need* one-on-one, face to face personal support and encouragement. A place to meet someone they can phone at 4AM and be well received.
>>That is not the need of the OSA patient, and hence, the motivation factor to reguarlary *attend* a meeting is not critical nor even present.<<
The above is THE reason ASAA, Mike, Linda and others should, IMHO, work to get the national organization(s) like ASAA to openly and actively support the online OSA discussion and support groups!
For-Profit or Non-Profit. Makes no difference. The national organizations for AA, NA etc., along with caring doctors, openly and actively support the for-profit Recovery Centers as well as meetings of AA, NA, etc. WHY CAN'T ASAA DO THE SAME?
Mike and Linda and Others: Please use your efforts to convince ASAA that the RIGHT AND PROPER help to OSA patients lies in their active support of the current online discussion and support sites.
Thanks for listening, Andy
Andy,FL andy wrote:
Mike and Linda and Others: Please use your efforts to convince ASAA that the RIGHT AND PROPER help to OSA patients lies in their active support of the current online discussion and support sites.
Thanks for listening, Andy
How do you know the ASAA isn't supporting the current online discussion and support sites? We're often telling people there are also other forums they might benefit from. And other posters, some of whom frequent cpaptalk and TAS, post comments in ours relating to these forums, letting people know that the others exist. If new people complain our chatroom isn't busy much, I tell them there's a perfectly wonderful one at cpaptalk, as well as TAS. Some have mentioned cpap.com as an online provider. The only difference is we accept the mentions and recommendations, but don't post the direct link. That's hardly a problem. And several times, when people ask where to buy online, I've given them the Froogle search site and tell them to search for cpap, and there is wonderful information from most of the online DMEs. And if any of the forums wish to link to the resource info we're trying to build, well that's great.
No I'm not influenced. If anything, I went to the ASAA highly critical of them. We all volunteer in ways that we feel most comfortable. I considered helping cpaptalk develop their resources made available to people. But I wanted to work in a way that might benefit more people. May be a bad choice, but the point is I'm volunteering. And I'm always being urged to return here to post.
Another thing you don't know about me. I'm fiercely protective of volunteers. Not just on these forums, but everywhere. You have no idea how much behind the scenes effort MikeSus has provided to both cpaptalk and to the ASAA forum. Far more than I've ever contributed, and I'm not talking about simply posting comments. Even with the ASAA, I'm always reminding them they are benefiting from the expertise and effort of Mikesus, and now some others, and they are obligated to match effort with effort. One of our members voluteers extensively on TAS, cpaptalk and the ASAA forum. Some respiratory therapists and sleep lab technicians have volunteered their help also. I am in awe of these people. No, they are not influenced. They feel they are influencing. There's a big, big difference.
And if you think about it, people here on cpaptalk, the ones who post regularly and often, respond to questions, they're volunteers too. They may be doing just fine with their treatment, yet they want to help.
Uh, you can see, I get real defensive of volunteers. Without them, places like cpaptalk and others would be nothing, and noone would be getting such great help.
Sorry. I tend to get real nuts on this subject.
My apologies.
Linda
Hah?
Hi again:
Have you not read these thousands of posts by CPAP users having problems with their therapy? Their situation is EXACTLY the same as the groups you mention. People in need, who are dealing with a potentially life-threatening disorder. Or people who refuse to accept they even have a problem (read poor CPAP compliance note). Expecting these people to come to the forums would be like an alcoholic at the bar asking to use the internet to sign on to the AA forum. It doesn't make sense.
And we're not just talking about AWAKE groups, we're talking about all live support groups. Any accredited Sleep Lab or Center needs a documented support program. That is required and examined during accreditation visits. I do not know what the failure rate of AWAKE groups is. I don't care. Their value is indisputable. If they fail it's because of the personnel, not the inherent value. Abolishing support groups is like saying if the President made a mistake, let's dissolve the government.
Incidence of sleep apnea is about 6.62%. So in our service area, I have to cover about 6600 individuals. Between phone follow-ups, direct interviews and attendance at the support meetings we have about 1000 hard contacts per year. Hard contacts with professional and technical people. So we're having direct involvement with about 15% of our target. OK, yea internet, we have access to everybody! In the U.S., there's 18 million patients. Even if you get 100,000 different people per year, coming in only to see if the magic pill or surgery is ready yet, that's a half a percent. Good work.
And you've still missed the point. The people who you need to see are not coming to the forums. You need to go out and get them. Just like AA, and the other groups. If you seriously believe you can just throw up a web page and "they will come" you don't understand the mentality of the middle aged male. We're basically a bunch of idiots who need to be clubbed over the head a few times.
Oh, and one more thing:
sleepydave
_________________
CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP
OK, at this point we have entered the surreal.Perhaps Linda, Mike, ASAA and others have been influenced by the spectacular success of groups such as AA, NA, OA, SexA, etc. Please, bear in mind these are groups for *addicted* people. Addicted people will and do attend two, three or even seven meetings every WEEK simply because they *absolutely need* one-on-one, face to face personal support and encouragement. A place to meet someone they can phone at 4AM and be well received.
>>That is not the need of the OSA patient, and hence, the motivation factor to reguarlary *attend* a meeting is not critical nor even present.<<
Have you not read these thousands of posts by CPAP users having problems with their therapy? Their situation is EXACTLY the same as the groups you mention. People in need, who are dealing with a potentially life-threatening disorder. Or people who refuse to accept they even have a problem (read poor CPAP compliance note). Expecting these people to come to the forums would be like an alcoholic at the bar asking to use the internet to sign on to the AA forum. It doesn't make sense.
And we're not just talking about AWAKE groups, we're talking about all live support groups. Any accredited Sleep Lab or Center needs a documented support program. That is required and examined during accreditation visits. I do not know what the failure rate of AWAKE groups is. I don't care. Their value is indisputable. If they fail it's because of the personnel, not the inherent value. Abolishing support groups is like saying if the President made a mistake, let's dissolve the government.
Incidence of sleep apnea is about 6.62%. So in our service area, I have to cover about 6600 individuals. Between phone follow-ups, direct interviews and attendance at the support meetings we have about 1000 hard contacts per year. Hard contacts with professional and technical people. So we're having direct involvement with about 15% of our target. OK, yea internet, we have access to everybody! In the U.S., there's 18 million patients. Even if you get 100,000 different people per year, coming in only to see if the magic pill or surgery is ready yet, that's a half a percent. Good work.
And you've still missed the point. The people who you need to see are not coming to the forums. You need to go out and get them. Just like AA, and the other groups. If you seriously believe you can just throw up a web page and "they will come" you don't understand the mentality of the middle aged male. We're basically a bunch of idiots who need to be clubbed over the head a few times.
Oh, and one more thing:
Our sleep laboratory runs at 85-93% compliance. We don't intend to try to match the success of the programs you mention-- we intend to be better.Professionals have conducted surveys among veterans, patients, and selected groups of AAs...But the facts about present-day A.A. are these in their studies: (a) A definite 75% fail to maintain sobriety. (b) Probably no more than one to five percent maintain permanent sobriety...
sleepydave
_________________
CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP
...other than food...
Well, let me try to straighten out a few things that have been misstated by a small group of folks and now seems to be taken as fact.
1. The ASAA has had links to this forum as well as a number of others. I am sure that if Johnny wanted to he could produce logs that show this. There has never been an attempt to divert or redirect *ANYONE* to any one particular site. The goal has always been and always be furthering the knowledge and awareness of sleep apnea.
2. "The ASAA should have just used forum (x) instead of starting a new one" Well if that were the case, why are people that have NEVER logged onto any of the other boards (remember the ASAA site had links) are logging onto the ASAA board? The simple fact is that there is not a "one size fits all solution". With increased awareness, all support forums will benefit.
3. "Why didn't the ASAA just partner with CPAPTALK?" Well the same question could be asked why didn't CPAP.COM didn't partner with Talk About Sleep. There is a simple reason for that. It didn't answer their needs. They didn't want a board that supported another store. The ASAA didn't want a board that supported any one particular store. By doing this, the ASAA forum has attracted a number of sleep professionals because of the obvious absence of commercial ties.
FLANDY - My question to you, is what are YOU doing to help further the cause? Being a Monday morning quarterback does not count. Have you volunteered with the ASAA or any other group? I might not be doing the right thing in your mind, but at least I am doing something.
1. The ASAA has had links to this forum as well as a number of others. I am sure that if Johnny wanted to he could produce logs that show this. There has never been an attempt to divert or redirect *ANYONE* to any one particular site. The goal has always been and always be furthering the knowledge and awareness of sleep apnea.
2. "The ASAA should have just used forum (x) instead of starting a new one" Well if that were the case, why are people that have NEVER logged onto any of the other boards (remember the ASAA site had links) are logging onto the ASAA board? The simple fact is that there is not a "one size fits all solution". With increased awareness, all support forums will benefit.
3. "Why didn't the ASAA just partner with CPAPTALK?" Well the same question could be asked why didn't CPAP.COM didn't partner with Talk About Sleep. There is a simple reason for that. It didn't answer their needs. They didn't want a board that supported another store. The ASAA didn't want a board that supported any one particular store. By doing this, the ASAA forum has attracted a number of sleep professionals because of the obvious absence of commercial ties.
FLANDY - My question to you, is what are YOU doing to help further the cause? Being a Monday morning quarterback does not count. Have you volunteered with the ASAA or any other group? I might not be doing the right thing in your mind, but at least I am doing something.
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rock and roll
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IMHO, I think all support groups and any help at all is good. Information is everything. I support AWAKE if they reach someone who is facing sllep issues alone and confused. I support all forums when they reach people that are up nights and can't sleep, I am for ANY proactive help we can get.
I take offense with deltadaves comment on info on these forums being gonzo!
I am sorry deltadave, but almost all of us are here because sleep clinics and dmes are so louzy at helping the patient and sufferer of SA. I have learned a million fold from these forums over any help I got from my sleep clinic and dme. I think you will find multitudes of negative feelings towards sleep clinics and dmes to any one positive comment you might find...if you can. While not all advise is right, they ar eall heartfelt and with our best at heart, not about greed and not caring. Your industry has a long way to go to even get our respect, I really don't think you have any pedestal to stand on knocking forums.
I say we appaud all and any attempt at reaching and helping sleep disabled people. No matter via what method and group. AWAKE does not have a chapter in HOUSTON, even though it is the fourth largest city in America. So they don't reach all. These forums reach all and any that use the internet. We need both.
I take offense with deltadaves comment on info on these forums being gonzo!
I am sorry deltadave, but almost all of us are here because sleep clinics and dmes are so louzy at helping the patient and sufferer of SA. I have learned a million fold from these forums over any help I got from my sleep clinic and dme. I think you will find multitudes of negative feelings towards sleep clinics and dmes to any one positive comment you might find...if you can. While not all advise is right, they ar eall heartfelt and with our best at heart, not about greed and not caring. Your industry has a long way to go to even get our respect, I really don't think you have any pedestal to stand on knocking forums.
I say we appaud all and any attempt at reaching and helping sleep disabled people. No matter via what method and group. AWAKE does not have a chapter in HOUSTON, even though it is the fourth largest city in America. So they don't reach all. These forums reach all and any that use the internet. We need both.
You know, there are other ways forums can help each other.
Just today I was talking to someone in the ASAA forum chat, someone from Great Britain. I told him he might check out cpaptalk, for I knew there was at least one active member here from Great Britain. The same happened with someone from Australia, also today. Both of them had not known about other forums.
I think it's important people link up with others from their area, even if they are still far apart. They can compare notes on local issues related to their sleep apnea. So, by any means necessary, I say.
Cheers!
Linda
Just today I was talking to someone in the ASAA forum chat, someone from Great Britain. I told him he might check out cpaptalk, for I knew there was at least one active member here from Great Britain. The same happened with someone from Australia, also today. Both of them had not known about other forums.
I think it's important people link up with others from their area, even if they are still far apart. They can compare notes on local issues related to their sleep apnea. So, by any means necessary, I say.
Cheers!
Linda