For Whatever It's Worth

[Amigo]

I ended my affiliation with the Sleep Apnea Support Forum today after being reprimanded for violating their posting guidelines.

I think the following message, and my reply, speak for themselves.

Please review the posting guidelines:

Although the ASAA advocates being proactive in ones treatment, we can not advocate or encourage making pressure adjustments without consulting with your physician. Please do not post instructions or how to guides for making adjustments or entering menus to make adjustments. We thank you for your understanding.

Regretfully, this restriction is the "final straw" for me, and I will no longer participate in this forum.

I can no longer abide the "Holier than thou," and "We know what's best for you" attitude which treats the visitors here as children who are unable to make decisions for themselves.

Information about, and effective treatment for Sleep Apnea is difficult enough to obtain, and few, unfortunately, have physicians or DME providers who are willing and able to guide their patients effectively.

Your "guidelines" are doing a great disservice to the sufferers of Sleep Apnea by arbitrarily withholding information which may be critical to their well-being, and it is shameful.

[Brent Hutto]

I can no longer abide the "Holier than thou," and "We know what's best for you" attitude which treats the visitors here as children who are unable to make decisions for themselves.

Amigo,

Surely you realize that your reponse to their reprimand exhibits the very qualities you are decrying. If people want to participate in a site which is based on the premise that sleep disorders are best treated in consultation with health care providers, I'd think the Internet is a big enough world to allow them to have that kind of forum. You obviously prefer a do-it-yourself approach and there are at least two forums I know of where that kind of thing is encouraged.

It's hard to win a "holier than thou" contest. I'd suggest a simple respect for the (clearly expressed) wishes of the owners of whatever forum you participate in. Otherwise, you end up looking like somebody who goes around "itching for a fight".

[wading thru the muck!]

Amigo,

I'm not suprized

...PM sent

[Amigo]

It's hard to win a "holier than thou" contest. I'd suggest a simple respect for the (clearly expressed) wishes of the owners of whatever forum you participate in. Otherwise, you end up looking like somebody who goes around "itching for a fight".

No, not "itching for a fight," just itching for openness and honesty. If you think that the vast majority of people on that forum are aware of how much crucial information is purposefully being withheld, you are greatly mistaken as I have learned in innumerable private messages.

My only abiding concern is that the people who need information to treat their problem get it, and they won't at the Sleep Apnea Support Forum.

Sleep Apnea can be a life-threatening condition, and, yes, I will certainly "fight" to see that everyone who needs it gets ALL the information available.

As for the "simple respect," I have left the forum as my conscience dictated.

[NightHawkeye]

My only abiding concern is that the people who need information to treat their problem get it, and they won't at the Sleep Apnea Support Forum.

Sleep Apnea can be a life-threatening condition, and, yes, I will certainly "fight" to see that everyone who needs it gets ALL the information available.

Seems to me there's a simple way to get information to those guys - just go over to that forum every now and again and reference them over to this forum. Or, is it such a closed society over there that posting a reference to somewhere else is forbidden.

Also, I seem to recall that their participation was at a lower level than here.

Just my random thoughts.

Regards,
Bill

[Surprised]

If you think that the vast majority of people on that forum are aware of how much crucial information is purposefully being withheld, you are greatly mistaken as I have learned in innumerable private messages.

My only abiding concern is that the people who need information to treat their problem get it, and they won't at the Sleep Apnea Support Forum.

Sleep Apnea can be a life-threatening condition, and, yes, I will certainly "fight" to see that everyone who needs it gets ALL the information available.

Amigo, I was not aware of this. Tis a sad state of affairs that members of any sleep apnea forum are prohibited from posting something as basic as how to change the pressure on their machine. Can they not even be referred to a site where they can obtain this information? I take it there must be a financial link between DMEs and the forum to which you are referring.

I can only hope that as someone begins their internet search for CPAP message boards, they stumble upon cpaptalk first. Can you imagine not knowing how to change the pressure on your own machine? Can you imagine asking for this information and being told you can't have it? Can you imagine going to a site you assume is there to help you learn everything you can about CPAP therapy, and discovering the most basic aspects are being withheld from you? What an eye-opener.

[Brent Hutto]

In my little bit of browsing there, it seems like people are fairly quick to point out that if you want do-it-yourself advice there are other forums out here. I don't think periodically posting links to this site over there for the purpose of redirecting inquiries here would be welcome any more than the owners of this forum would appreciate the reverse.

For what it's worth, when I got my diagnosis casual web searching found cpaptalk.com way before the other place. I think anyone who is looking for information will find their way here just fine.

Whether you agree or not, the prevailing opinion there is that a person with a sleep disorder should be referred first and foremost to a physician or other professional health care provider. I would think the advice "Go ask your primary care doctor or a sleep specialist" over there is no more likely to kill someone than the advice "Try upping the maximum pressure on your APAP" they might receive on this site.

For my part, I'd no more play around with my own OSA treatment prescription than I would set my own broken leg but I realize that's a judgement call. Maybe I've just always been lucky picking doctors (not that I haven't blown off a few who didn't seem to be on the ball). Rhetoric aside, I've seen no advice on that forum that struck me as life-threatening.

[capt]

Amigo, I read and tried to follow their forum rules. I agree with you, so I like this forum better. Look at the bright side, when I first joined that forum I did not realize that solving a rainout problem by recommending the Aussie Heated Hose was taboo!.

[Linda3032]

LOL, was it taboo? That's rediculous. If it's the forum I'm thinking about, I'm not surprised. I innocently posted something there a couple of years ago and got my hand slapped.

This is the only forum I've seen that worth a damn - and can truly help others. (oops, can I say damn?)....

Darn, another post deleted. ....

[Brent Hutto]

Folks, it could be worse. We could be on a forum that has Mr. Magoo (or whatever his name is) posting "YOU'RE JUST TOO FAT, YOU'LL BE DEAD SOON IF YOU DON'T START WATCHING YOUR DIET, CPAP WON'T SAVE YOU" a dozen times a day.

[th]

[quote="Brent Hutto"]Folks, it could be worse. We could be on a forum that has Mr. Magoo (or whatever his name is) posting "YOU'RE JUST TOO FAT, YOU'LL BE DEAD SOON IF YOU DON'T START WATCHING YOUR DIET, CPAP WON'T SAVE YOU" a dozen times a day.

[NightHawkeye]

I don't think periodically posting links to this site over there for the purpose of redirecting inquiries here would be welcome any more than the owners of this forum would appreciate the reverse.

Actually, Brent, I'd be surprised if that mattered to anybody here. Links get posted to articles on other sites and forums frequently here.

Just another indicator of the difference between the forums, I suppose.

Regards,
Bill

[Snoredog]

Brent wrote:

Folks, it could be worse. We could be on a forum that has Mr. Magoo (or whatever his name is) posting "YOU'RE JUST TOO FAT, YOU'LL BE DEAD SOON IF YOU DON'T START WATCHING YOUR DIET, CPAP WON'T SAVE YOU" a dozen times a day.

LOL! couldn't have said it better myself.

[Darth Vader Look]

Amigo. I'm just about ready to join your club as well. I have been fronting the APAP vs CPAP battle over there. With my last posting on this topic they (some forum moderator who uses this site as well) ) moved the entire thread down the list and removed the new post flag so that others would not look at it. This was just this morning. The interesting thing is that these moderators have and use APAPs but tell you that CPAP is the way to go. Talk about the attitude, do as I say and not as I do. Moderators are supposed to control flamming of people, remove bad language and respond to people who have launched complaints about the forum. They really shouldn't interfere as much as they do there. I have never seen it that bad on any of the half dozen forums I am on. I have heard/read the term forum Nazis being tossed around about that site and another that I won't post to. I tried to help earlier on with links to this site and another but the links were removed and citied as storefront posts. I PMed the people and hope that those were not moderated up. Even references to threads on this site and TAS seem to end up cut out. You have to feel sorry for the person not getting told the entire story. Some links are allowed but I guess you have to be special in order to get to that status.

With exception to the recent spamming this site is what I consider the best out of the 4 I know about and the 3 I post to. The fact that it has a CPAPopedia and no other site does clearly makes it top notch. I think Johnny's site sets the benchmark and he definitely has a winner.

[Gidgie]

AMEN!!!!!!!!!!!!