"Like a Frag Grenade"

[Gazhacks]

With thousands if not millions of sufferers of sleep related problems why is there no central organisation, or a national organisation to run things? Intead over this side of the pond we have several groups or association spouting that there the best when most of them are company related and trying to sell you something? Wheres the "MS Society" of sleep, national and International goverment run groups that pull all the information from research down to mask choices. It seems that a few big companies have there own monopoly on sleep products and someone tossed a frag grenade into the groups as it seems there are hundreds. I even found a group called "The British Snoring and Sleep Apnoea Association" which Im told by another group that its a fake, a company selling its own products covered by an association. It seems that these days anyone can call themselfs anything and no one questions it. Maybe I will start a world organisation of sleep society and pay £50 for a degree in this field.

Where are the governing bodies? Who is watching out for us? I have travelled around many sleep forums and I think I can say that this seems to be the biggest in the world. The Americans are usually the front runners in medical associations and I bet you have many but how long do we all have to wait before they all come together to form one large association or sleep society or are we yet to chuck more frag grenades into the mix before then. I just hope not everyone sleeps on it

[chunkyfrog]

Gaz, honey; are you assuming all of the big medical 'disease' foundations are completely altruistic?
Many are huge photo-ops for celebrities and politicians.
Others are money mills, that raise millions in funds, but spend a shocking proportion of it on 'expenses' and salaries.
I will not name names, but a search on 'green' charities reveals much.
I'm sure that some actually do exist for the good of the ill and suffering; but there are are two big obstacles in OUR way.
1: the prejudice about apnea is that we are mostly old, fat guys--(not good camera fodder).
2: there are huge amounts of money to be made off denial and misinformation.

[Gazhacks]

Confusing things afoot. "1: the prejudice about apnea is that we are mostly old, fat guys" We? from a women? Strange

Are we not worthy of a International Association? or are we to put up with the greed and misinformation?

Who's fat. Im as fit as they come

[BlackSpinner]

Yes we know that we are not but the media and most out of date doctors still believe it. Almost every newspaper article talks about fat necks and overweight males. So we skinny (previously) females get overlooked. Active in shape guys get overlooked.

Media wise the image is of some fat old couch potato eating a bag of potato chips (crisps in your lingo) while watching his 50 inch tv.

[chunkyfrog]

Well, my diagnosis came at the tender age of 63, after years of suffering --"You don't look like you have apnea"
Neither did my darling hubby.
Of course, we do deserve a good strong organization.
What do you suppose makes the difference: between a good organization and one of the others?
Timing, education, victim profile, opportunity?
A good organization needs champions, funding, and a positive public image.
We are still waiting for our celebrity spokesperson--not just a five-minute face time and then they run like heck.
In the meantime, we have this forum--and ourselves.
Continue to fight the good fight.

[Starlette]

Whisper's in Gazhacks ear, "Psst Gazhacks: Check out my latest post, "Fox News - Better Sleep Week"
That should make you happy.
Think sleep disorders are FINALLY getting national attention

Starlette

[Gazhacks]

Will check out that post, maybe its time that we put a Calender to gether to make people aware that not all sufferes are of a larger persuasion. Oh and theres no such thing as a fat lady, just cuddly ones





Can I be Mr January

[Starlette]

You got my vote!

[jnk]

It's a problem.

Here is my opinion of how we got where we are and where we need to be.

Traditionally speaking, over the centuries, people have been in charge of their own sleep and their own breathing. No one saw any reason to gather into associations or to create organizations to promote better sleep and better breathing. No governments formed official sleep ministeries or breathing cabinets, since air is a simple environmental concern and sleep is personal, not governmental. So goverment involvement--locally, nationally, or internationally--would have clearly been a waste of everyone's time, since there was nothing much to talk about and nothing much to do about it if there had been.

The exception to that, maybe, was sports and self-defense associations who understood the importance of sleep and the importance of breathing. They may have had teachings about methods of breathing and ways of sleeping, but there was still little understanding of the importance of breathing while asleep and there was little that could have been done about it even if there had been.

Even medically speaking, although breathing and sleep were considered medically relevant, they were not so much considered problems in and of themselves that could be directly treated, other than in emergency situations; they were considered to be mostly mysterious bodily functions that could be monitored for the purpose of diagnosing and treating other problems--little more than that.

Then a few decades ago, that all changed when a bunch of guys found a practical way to help people breathe better while asleep. It was called CPAP.

So what did those guys do about what they found? They tried their best to spread the word.

What happened?

Nothing much. Nobody really cared. Oh, sure, a few sleep scientists were interested. And a few breathing experts were interested. But they looked at the rudimentary CPAP and scratched their heads and laughed and saw no reason much to study the durn thing. It could easily have ended up on the scrap heap of history if not for a few tenacious fighters who believed people in general could have their lives changed by it if given the opportunity to use a practical version of it.

The problem was, how do you make that happen? How do you make CPAP machines practical and available to all? You couldn't expect people on the street to donate to a cause they couldn't understand. No governments were going to form breathing ministries and sleep cabinets. Medical people were mostly in the business of saving lives, not improving quality of life with practical home-use gadgets. So, what to do?

The answer was--find a way to get businesses to invest and make sure there was the potential for some big money in it. It was the only way. Without that, the entire concept of CPAP would likely have died an unknown death somewhere in the backwoods of Australia. (No offense to the land of the CPAP gods.)

The thing is, that is not ancient history. It is recent history. It explains, for me anyway, why the use of CPAP is still mostly about for-profit companies, not docs or medical associations. The businesses brought us the miracle of PAP therapy by getting docs, insurance, and government agencies involved with it as a medical therapy, even though it is mostly a home quality-of-life therapy with serious medically related implications. Much like eating. Or exercising. Or bathing.

The businesses decided to recruit some forward thinking medically influential people so that talented specialist docs could be lured into the lucrative field of sleep medicine to give the whole thing an air of medical respectability. Rightfully so. It needed that. At the same time, though, the average Dr. Joe Blow in a family practice has remained mostly unconvinced. He has already been jaded by the big-pharma monster companies trying to control his practice, so he resents the home-equipment manufacturers trying to, in his mind, jump on the bandwagon and do the same thing to him--dictate how he practices medicine. The whole thing smells more of business than medicine to him, so he resists the whole tide of CPAP with all his might. To the detriment of his patients. But he does. A few exceptional docs see beyond the marketing once they see how patients' lives improve with successful PAP therapy. But word gets around slowly.

That brings us the larger issue that whenever anyone has a gadget that can improve lives but that is even remotely medical in nature, you have to decide how to proceed from there. If it is expensive, you either need to work with the govenment people and the insurance people to prove it is medical enough to be covered, or you have to find a way to get the cost down so the average joe can buy it for himself. At this point, the choice seems to be to keep the cost high. Artificially. That way, docs and governments and insurance people stay involved for distribution, and medical docs and medical schools can start to come around.

But in the future, once the therapy is better understood in general, the public will, in my opinion, demand easier access to the gadgets that can improve their lives. At that point, there will no longer be a need for docs and regulators to stand between the customer and the manufacturer. PAP will become an over-the-counter gadget as common as a room humidifier. Wal-Mart will stock its shelves with them and online suppliers will be able to sell the machines at fair market value instead of manufacturers' favoring the present DME cartels with their online-pricing policies.

Oh, sure, some specialty machines may need to remain Rx instead of OTC in order for people with serious illnesses to get the medical help they need. But for the plain vanilla everyday OSA person, he will finally be able to get what he needs without today's hassles and the ridiculous rigamarole of dealing with clueless docs, fussy RRTs, and DMEs staffed by dishonest idiots.

May that day come quickly.

[chunkyfrog]

"Ewe's not fat; ewe's just fluffy."
And ewe are adorable.

[Starlette]

@ Gazhacks - IMHO, what I think would be an awesome photo would be your first pose set to the 2nd picture due to capture the magnificent scenery. That would make for an AWESOME January picture. Again, just my humble opinion.

Starlette

[Gazhacks]

JNK, you put that down just right and agree with alot of it but its up too us to change it, power to the people


...and for the ladies







you cant beat clean air

[Starlette]

@ Gazhacks

2nd Photo - THAT'S the January Photo!!! That's a magnificent photo, love it
I also agree with your reply to jnk. I just couldn't come up with the right words.

Starlette

[Janknitz]

With thousands if not millions of sufferers of sleep related problems why is there no central organisation, or a national organisation to run things?

Good idea in theory, maybe not such a good idea in practice. Take the American Diabetes Association for an example--that's a central organization in the US for diabetes. Their largest donors (millions of dollars!) are diabetic drug companies and companies who push grains and sugar in one form or another (like a well-known soda manufacturer). That's why that organization pushes eating six servings of whole grains, plenty of fruit on people with blood sugar issues--"eat up and shoot up, it's good for our sponsors".

ADA is a huge beaurocracy and a powerful lobbying agent. But research funding is steered toward drug development and telling people that they need not restrict their diets--because drugs can cover the inevitable spikes. Conflicts of interest abound and the ordinary diabetic's access to alternative viewpoints is restricted by the association's size and power. Scary.

Maybe we're better off being decentralized!

[chunkyfrog]

The new paradigm of PAP must be driven by patients and the machine/software designers.
The marketing departments of the big companies just don't 'get' it, and they WILL not,
as long as they are suckling at the same teat as the medical/DME/insurance conclave.
Progress is up to us who use these devices.