Myapnea.org

[JQLewis]

Are folks aware of this initiative? If so, what do think?
http://www.sleepreviewmag.com/2014/05/c ... eep-apnea/
http://www.myapnea.org/

- Edited to add link to review page

[Julie]

Sounds like it could be interesting, but in fact is really nothing right now... it might be a good idea to wait for it to be running before commenting...

[JQLewis]

Sounds like it could be interesting, but in fact is really nothing right now... it might be a good idea to wait for it to be running before commenting...

My reason for posting this was that I was looking for some kind of activity related to patient-centered activism, and this is the closest thing I could find. They're not up and running yet, but it's obviously an effort with a lot of planning behind it and a lot of people committed to it.

I have frankly been appalled by my experiences with sleep apnea treatment, and I have been surprised at how little patient activism I've been able to find. As soon as I started posting here I was advised to forgo the medical establishment and "be my own doctor". While I completely understand the reasons behind such sentiments I would think that with millions of OSA patients we would be able to band together and demand better treatment. Is the ASAA providing adequate representation? Why, for example, is the traffic less on their forum than it is here?

[Pugsy]

Is the ASAA providing adequate representation? Why, for example, is the traffic less on their forum than it is here?

Because they are backed by the medical profession who still think that they can do no wrong and walk on water and titration studies are never wrong and if anything is going wrong with a patient's therapy then it must be the patient's fault and they just need to tell their doctor (since docs walk on water) and patients are too stupid to figure this stuff out on their own.
The only real "help" that forum ever offers is "talk to your doctor as he knows best" when the actual therapy is in the toilet.

I wouldn't be placing any bets on this new website being any different but hopefully I will be proven wrong.

[BlackSpinner]

I doubt it will be more then "see your doctor". They are more interested in research based on large amounts of data.

[palerider]

Why, for example, is the traffic less on their forum than it is here?

as pugsy so pointed and accurately put it, because there's no actual help over there, it's fobidden by the rules.

no website links, no commercial references, no "empower yourself"... just "we're so sorry you're having problems, see your doctor!"

[Pesser]

Why, for example, is the traffic less on their forum than it is here?

as pugsy so pointed and accurately put it, because there's no actual help over there, it's fobidden by the rules.

no website links, no commercial references, no "empower yourself"... just "we're so sorry you're having problems, see your doctor!"

On this forum you get to keep your tonsils. Remember the 60s and 70s? I still have my appendixes, and my gall bladder, and remember the 80s and 90s; I never got a puffer!

[chunkyfrog]

I'll believe it when I see it.
Involvement with the "gods" of the ASAA does not bode well.
It could be another tool to force unsatisfied patients to STFU.

[palerider]

I still have my appendixes,

I didn't know funny lookin birds had more than one! us humans only have the one.

learn something new every day

[chunkyfrog]

Autocorrect performs yet another miracle--(awkward applause)

[Janknitz]

The ASAA is just like all the other such organizations--the American Heart Association, the American Diabetes Association, etc. Most if their operating budgets come from self interested corporations that want to keep things exactly the way they are to maximize their own profits. They may all claim to be working toward a cure, but what do you think a cure would do to their profits?

For example, drug companies, big agriculture, and junk food companies are the biggest sponsors of the ADA. Why? Keep them eating junk food (eat up and shoot up, "Coca Cola can be part of a healthy, balanced diet")and wash it down with soft drinks, raise that blood sugar so the drug companies can sell lots of drugs. That's why the ADA and AHA cling to dietary recommendations that CAUSE the very problems these organizations claim to be seeking a cure for. Meanwhile there are excellent things that can be done to decrease or even "cure" these modern diseases but they can't be monetized--real food diets minimizing toxins and exercise are way more effective than the best drug for type II diabetes or a stent, but my pastured egg farmer can't contribute millions of dollars to the ADA or the AHA that continues to vilify eggs.

ASAA is in the pockets of machine and mask manufacturers, and professional organizations who treat apnea. I'm quite sure that companies like Crapria give big. All if these corporate sponsors have a vested interest in keeping the costs of CPAPs and supplies high, in making us pay (doctors and DMEs)for the simplest adjustment to our machines, etc. so that's why the ASAA forum allows you to talk about machines and masks but never dare to suggest self adjustment, never link to articles and websites because they may not comply with the messages their corporate sponsors want you to hear.

I used to hang out there but it was heartbreaking to see a newbie struggling with a brick and poorly fit mask when even a link to my blog was forbidden (and I'm NOT going to write it out or copy and paste each time). People there were told how dangerous it was to touch the settings on their machines (dangerous to the docs and DMEs who charge to tell you that yes, you need more pressure and we will adjust it for you for a fee). People were clueless about how to work with their insurers or choose a DME, and it was too difficult to explain with your hands tied behind your back.

[palerider]

Autocorrect performs yet another miracle--(awkward applause)

I've taken to calling it "autoINcorrect".

I've got a programmer friend who told me, after another autoincorrect incident, that when he becomes rich, he's going to use part of the funds to hunt down and properly punish (I think he said "kill") the person who invented 'autocorrect'.

[palerider]

I used to hang out there but it was heartbreaking to see a newbie struggling with a brick and poorly fit mask when even a link to my blog was forbidden (and I'm NOT going to write it out or copy and paste each time). People there were told how dangerous it was to touch the settings on their machines (dangerous to the docs and DMEs who charge to tell you that yes, you need more pressure and we will adjust it for you for a fee)

there's so little traffic over there, it's easy to keep an eye on new posts via rss and pop in and pm them advice to come over here if they want community support and help.

[49er]

I was banned from that site for providing forbidden information. I just got tired of seeing people struggle and couldn't stand it anymore. Oh well.

Anyway, just to encourage folks, I went to a new sleep doctor to today who didn't seem threatened that I was a knowledgeable patient and visited an apnea board. There is hope.

[balor123]

I read an article about it but I don't recall where it is anymore. It's being founded by a doctor associated with Harvard, who claims to have diagnosed his son at 2. The description didn't impress me at the time but the amount of money he procured for it did (tens of millionsI think).