Sleep Blog

Snake Oil

In the bygone days of the mid-to-late 1800s, especially with the westward expansion in the U.S., many traveling sales folks had one goal in mind: make money and make it now. Two days later, the traveling sales folks would be in a different town, hopefully without anyone in the audience of the public spectacles they made of themselves to hawk their goods.

The ailment of the day was painted or printed on anything possible, including potions that could kill. They soon became known as “snake oil,” named after Clark Stanley’s Snake Oil Liniment.

The intent of those traveling salesmen, and yes, sometimes traveling saleswomen, was to make money. Nothing else mattered, just as long as their pockets, or perhaps wallet or purse, was full of greenbacks earned by selling their snake oil. If someone was in the audience that knew them from another town, things usually went back for these sales folks selling their finest snake oil.

Not much has changed over the past 130 years or so, it seems. When it comes to the world of sleep medicine, especially many sleep disorders, in particular, cures and treatments dreamed up by those wanting to hawk their snake oil is still very much alive and well.

Elastic straps help treat apnea. Not!

Back at the turn of this century, back somewhere around 2001 or 2002, there was a product, nothing more than a glorified chin strap — a wide elastic band that was slipped over the top of the wearer’s head an underneath the chin to keep a person’s mouth closed during sleep — was pushed as a “treatment” for sleep apnea.

After the FDA contacted the primary company selling the cheap-to-made, expensive-to-buy — costing around $55 for nothing more than an elastic band with a Velcro closure — as well as some of the company’s “affiliates”, claims weren’t as bold. Instead of saying the chinstrap “would” cure apnea, the SPAM and Web sites would claim thousands of users the world over were using the strap and waking to find they no longer snored, had apneic events, resultant daytime sleepiness, and other such garbage.

After a great deal of backlash on many sleep-related Internet communities and sleep-related email discussion lists, such as CPAPusers-L, much of the SPAM finally subsided. The SPAM to personal accounts, though, went on for several more months before dying off entirely. Sadly, even today, people buy these high-priced elastic bands in hopes that it will really cure their apnea. There’s nothing magic about the straps.

I used to tell people, and I will share it here: instead of paying $55 for a chin strap, visit your local fabric or arts and crafts shop, or even a Big Box store, and buy a length of elastic about eight to nine inches long, about one inch wide, and get a Velcro closure, both the hook and the loop. Sew the hook side of the Velcro closure onto one end of the elastic strap, and the loop side of the Velcro closure onto the other end, and there you have it: an inexpensively made chin strip. Total cost: less than two dollars (in the U.S.). Total sewing time: about 10 minutes, if you’re slow.

Family doctors and snake oil beliefs

Snake oil alive and well today. In fact, there are many primary care physicians and even some specialists that seem to live in a vacuum. In the vacuum in which they live, medical research that isn’t more than 20 years old, at least, cannot get in. When they hear patients or other physicians talking about sleep disorders, sleep apnea, narcolepsy, and restless legs, they either cease listening to the conversation or dismiss the conversation as being about “nothing more than snake oil.”

See, before 1982, there was not such thing as sleep apnea. Oh, what a world to live in, right? No one had to live or deal with sleep apnea. No one had a sleep disorder. In fact, there was no such thing as a sleep disorder. If you went to the doctor and tried to talk about anything in “the bedroom” (where’s the eerie music, music from the Twilight Zone, or maybe even some psychedelic music when you need it?), the doctor would quickly say something like, “Whoa! That’s a personal matter.” Well, if you were an attractive woman, back then it was mainly male physicians, so he may have listened for an “opening” to try to seduce you. Past that, any discussion of the bedroom was taboo.

In fact, many physicians today still treat issues that primarily occur in the bedroom as taboo topics. In fact, there are many doctors today that will tell their patients that sleep disorders are bogus science, dismissing all the research of the past 30 years or more with little more than slight of wrist, adding, “It’s all snake oil to me.”

It’s health care providers like that who worry me to no end. It’s health care providers, such as the one I discussed yesterday, that worry me to no end. As I said in yesterday’s post, as I tell others when I talk with them on the phone, helping them, coaching them, working with them to overcome a variety of challenges, and as I tell people who send me instant messages and those on various email discussion lists: You must be your own best advocate. You must know — you must understand — any health conditions you have, as well as all appropriate treatments, including experimental ones.

Knowing all options available allows you to better be able to discuss things with your physician in a professional, informed manner. Physicians are there to help provide care for your health. They are not any sort of deity, though some believe they are. They cannot cure everything. In fact, the field of medical care and research is one of continual learning, exploration, and research. You are part of the team overseeing your health, and you do have say — final say, in fact, over any and all health care options as they relate to you. Remember that, but, more importantly, put that into practice.

Medicine, health, and making money in the 21st century

As I’ve mentioned before, and as many know, I am active in many online sleep communities, including chat forums/bulletin board sites, email discussion lists, closed (private) forums/bulletin board sites, and a few developing online areas. Because of my presence in so many places, and participation, though often privately rather than in public, I see a lot of issues, SPAM, and schemes. I also hear of so many falsehoods that I sometimes have to shake my head, basically, as a reality check.

The most recent thing that caught my eye, at least from the world of those perpetuating a lie, came from an independent dealer of the Shaklee Corporation. For a variety of reasons, but chief among them, to ensure that I don’t help him make a penny as a result of this post, I will not use his full name. In fact, since I’ve got a firmly established legal paper trail documenting everything, all the way to Shaklee’s corporate, legal, and public relations offices, I will use a pseudonym, ShakleeIndy-Dist for the original author. Basically, the name I created means Shaklee Indy (Independent) Distributor.

On September 19, ShakleeIndy-Dist posted a message to at least one email discussion list focused on sleep apnea, claiming one of Shaklee’s air purifiers helps treat apnea. Instead of explaining what ShakleeIndy-Dist wrote, here, in his own words, complete with poor grammar, sentence structure, misspellings, and improper punctuation, is his sales pitch, in full:

I’ve had sleep apnea since 1996 when it was mild. I could never get used to the CPAP machine back then so could never sleep and keep the mask on for any length of time. As my apnea grew to the severe level it began more difficult for me to make it through the day. I discovered this incredible Air Purifier which seemed to clean the air in my whole house so well it help me sleep a lot better - the unit purifies the air in the whole house up to 3000 sq. ft. Not sure how it helped me so much but it helped a greta deal. I liked them so much I have been marketing them to people with allergies, astham and sleep apnea with great results.

If anyone is interested in checking it out you can visit my website at [deleted to remove any profit potential] - it also comes with a 60 day money back guarantee so you have nothing to lose and lots to gain. Just thought I’d share this with all those who share our sleep apnea problem. Thanks.

To say I was completely flabbergasted, let alone sickened by this message, is an incredible understatement. In fact, I could not believe an independent Shaklee distributor — or an independent distributor of any of the handful of mature, network marketing companies would make such a statement. Then again, it’s the ignorance of the person, not a reflection on the company — in this case, Shaklee — for the comments being made.

A few people responded to ShakleeIndy-Dist’s message, including a flame. One person, though, actually replied with something of an open “pondering statement” on the list, directed to ShakleeIndy-Dist, inquiring if he had undergone a follow-up sleep study following his self-prescribed treatment of non-therapeutic air filtering to treat what may be diagnosed severe sleep apnea — which he claims, but never provided information about the severity. ShakleeIndy-Dist never responded to the questions or comments on the list.

Checking things out with the big cheese

In the corporate world, everyone answers to someone. In the network marketing world, the same holds true, as well. For independent distributors, they can market the goods allowed under the agreement they sign with the corporation of choice. In this instance, it’s Shaklee Corporation that oversees ShalleIndy-Dist and his actions, including product claims.

I contacted Shaklee Corporation’s acting vice president for public relations, Cheri Labadie, was contacted by phone, spoke with her for about 15 minutes about the situation, then forwarded her the comments posted by ShakleeIndy-Dist.

Labadie expressed in her reply email to me that she appreciated my contacting her about the claims made by one the the company’s independent distributors, as well as the email I sent, documenting all comments verbatim. Obviously, for the company, it’s easier to learn from someone contacting them informally — even with full disclosure all comments, including the claims made by a member of its independent distributor ranks, will be published, than having to deal with a summons in a legal issue.

In replying officially, for comment, understanding from me, verbally and in the email, the comments would be used for publication, Labadie:

Thank you so much for your detailed email and your phone call yesterday. I wanted to follow up with you and let you know that the contract between Shaklee Corporation and each Shaklee Distributor provides:

“No product claims … may be made other than those authorized in …product literature, labels, and/or… related materials.”

In response to your communication, Shaklee has contacted the Distributor who claimed that the air unit is useful in the treatment of sleep apnea. He has agreed to post a retraction of his statement and to cease making such claims in the future.

Again, thank you for making us aware of this issue and giving us the opportunity to respond.

Knocking on wood

There’s an old superstition that you “knock on wood” in hopes that bad things — or perceived bad things — don’t happen or come true. In the case of ShakleeIndy-Dist, I was knocking on my wood desk as I considered emailing him.

I just to be sure ShakleeIndy-Dist wasn’t as looney as he came across as being on the email list, I dropped him a personal email. By sending him the email, I wanted to prove, mostly to myself, that no one could be so uninformed — no, that’s not it. Ill-informed? No, he was hawking snake oil. As stupid as what he came across as being, in trying to market something that filtered air, hawking it as something to treat sleep apnea? Yes, that’s it! I wanted to prove to myself that no one would really state anything like that if challenged.

Aside from the morbid curiosity of seeing if someone would really attempt to hawk snake oil in 2007 for profit of perhaps $50 to $100 or so, I also wanted to know if this air purifier from Shaklee could somehow treat apnea. Hey, research is going on all the time, and if there was something to his claim, I wanted to hear about it. More importantly, I wanted to see the research that was done.

As with all things in life, I checked out this off-the-wall claim. It’s one of those things that go back to my childhood: I question everything and everyone. I take nothing at face value, though some often think I do. I always check out what I’m told, just to be sure. It’s in my nature, which is one reason I loved working in newspapers for so long: I was paid to badger people with a string of unending questions.

To be fair to ShakleeIndy-Dist, I am pasting the full exchange, with email addresses, links to his Shaklee distributor page, and his Shaklee distributor telephone number removed:

On 9/21/07, Dave J. (Scoop0901) <deleted for privacy> wrote:

I use my asthma inhaler a lot. You don’t need the inhaler anymore?

As a bonus, the air purifier got rid of the apnea, too? That’s one of the biggest pains I think everyone has.

On 9/20/07, ShakleeIndy-Dist <deleted for privacy> wrote:

---

From: ShakleeIndy-Dist [mailto:deleted for privacy]
Sent: Thursday, September 20, 2007 7:17 PM
To: ‘Dave J. (Scoop0901)’
Subject: AirPurifier

Hi Dave:

The Air Purifier just helped me in so many ways. I was using an inhaler for asthma and as soon as I started using the purifier I didn’t need it anymore – the doctor was stunned.

Since the unit covers up to 3000 sq. ft. it purifies the air in my whole house so I leave it on in the house all day and put it in my bedroom at night. I’m not sure how it helped my apnea but I couldn’t even tolerate using the mask but once I put the purifier in my room I began to sleep better and longer with the CPAP. The unit has two technologies which pretty much cleans everything in the air – I think the other big thing is that since the CPAP machine doesn’t really have a filter this keeps me from breathing in any types of particles, pollen etc. while I’m sleeoing all night long – my CPAP specialist told me that it is making a big difference. I want to share this fantastic product with anyone who can benefit from it. I loved it so much I started to sell it.

If you’re interested you can visit my website at [deleted to remove profit potential and check it out. Right now we are offering a total of $70.00 of rebates. So if you become a member for $19.95 you will get that back in a rebate with an additional $50.00 once you decide to keep it – it comes with a 60 trial.

Let me know if you have any other questions.

Thanks.

ShakleeIndy-Dist

First, just about every xPAP device — CPAPs, BiPAPs and bi-level devices, and auto-titrating and AutoPAPs, all have filters, and most models have high efficiency particulate air (HEPA) filters, as well as other fine or micro-filters available for use, so his comment there is blatantly wrong. If he didn’t know, well, it’s because he has a really old machine and never maintained the machine, such as contacting the dealer where he obtained the machine to do even the most basic annual maintenance: checking the pressure. Had he done that, he likely would have been told how to clean the machine.

If he has a CPAP, mostly made since 2000 or 2001, just about every one has a HEPA or micro-filter available, or both, in addition to the standard filter, or on some machines, filters, that help by default.

What’s a HEPA filter? It is a type of air filter that is able to remove at least 99.97 percent of airborne particles 0.3 micrometres (µm) in diameter. According to information on Wikipedia, “Particles of this size are the most difficult to filter and thus the most penetrating particle size (MPPS). Particles that are larger or smaller are filtered with even higher efficiency.”

If ShakleeIndy-Dist is using the machine he received when he was first diagnosed in 1996, he really needs to get a new machine. First, they have an “expected” life of about five years. If he’s using the machine he received in 1996, that machine is now at least 11 years old, if not older. If ShakleeIndy-Dist has a newer machine, especially one purchased and built since 2001, he really needs to sit down and learn about his machine and it’s capabilities.

In looking at the rest of his email, I wanted to clarify with ShakleeIndy-Dist what he was implying in his email. ShakleeIndy-Dist kept talking about the air filter from Shaklee making things “great” for him, but never saying just what it was doing to make things great, or if he was or was not using a CPAP. If he wasn’t, as his reply to the list seemed to hint, that he no longer needed the CPAP because he had the air filter running.

To clarify, I replied to the email from ShakleeIndy-Dist, seeking to clarify his statements. I wrote back, on September 21, specifically asking ShakleeIndy-Dist:

So, because of the air purifier, you don’t need the inhaler anymore?

But the sleep specialist said because of the air purifier, the apnea is treated now and you don’t need a CPAP?

By that point, I had received the email from Labadie, saying Shaklee had contacted ShakleeIndy-Dist and told him to stick to the information provided, basically, and not toss out false claims, making Shaklee’s products out to be snake oil.

Mind you, in all of this, Shaklee is not to fault for anything. Nothing in Shaklee’s literature makes any claim or comment about apnea, let alone treating it. As for asthma, that’s not an area of my concern, at least not for this blog, so I will not comment on anything related to the asthma comments ShakleeIndy-Dist made on the email list, or, via a private sales pitch email in replying to me.

To Shaklee’s credit, the corporation did quickly respond, contacting the independent distributor — meaning the only relationship that exists is not of employer/employee, but more of individual with permission to buy proprietary products, and perhaps other products, as well, from Shaklee, and sell them to others. That is not the “legalese” description of Shaklee’s distribution contract, and I do not speak for or represent them, just as Shaklee does not speak for me.

In an effort to “make things right,” perhaps at Shaklee’s insistence to make clarification, ShakleeIndy-Dist posted a second message on that email list, saying:

I did not realize when I posted my message that it amounted to a claim that the air unit is useful in the treatment of a disease or health- related condition. I do not intend to state or suggest that the air unit should be used to treat or cure sleep apnea.

I also will prepare a response from the Company. Thank you.

ShakleeIndy-Dist

While I have no idea what ShakleeIndy-Dist meant when he said, “I also will prepare a response from the Company,” at least he did come clean, to those he SPAMmed.

ShakleeIndy-Dist’s comment that he “did not realize” his statements were “a claim that the air unit is useful in the treatment of a disease or health-related condition” strikes me as … odd, at the very least. There are many other things that come to mind, as how can anyone say, “I’ve had sleep apnea since 1996 when it was mild. I could never get used to the CPAP machine back then so could never sleep and keep the mask on for any length of time. As my apnea grew to the severe level it began more difficult for me to make it through the day. I discovered this incredible Air Purifier which seemed to clean the air in my whole house so well it help me sleep a lot better - the unit purifies the air in the whole house up to 3000 sq. ft. Not sure how it helped me so much but it helped a greta deal. I liked them so much I have been marketing them to people with allergies, astham and sleep apnea with great results” — and then turn around and “not realize” they were making a statement?

If Shaklee’s top folks are watching ShakleeIndy-Dist’s actions, maybe they will have to explain, in clear English, what a statement is, but that’s something ShakleeIndy-Dist should have learned in elementary school.

It all goes back to integrity, honor, ethics, and education. Caveat Emptor (buyer beware). Be your own best advocate, know what’s real and what’s snake oil, and if you don’t know, do real research, independently, validating all claims. And just to clarify things: No, an air purifier will not treat sleep apnea, no matter how much of a discount or even if the “money back guarantee” period is extended to 120 days, up from 60.

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