Be Careful Out There! (A Snake Oil Rant)

by Dean Kramer 
May, 2002


My book is at the publishers and I am back at MSWorld. It's great to be writing for you again. I missed the rhythm of this monthly offering, and I thank all of you for your patience during my break.

Ever since I acquired a computer and Internet service I've been cruising the 'net looking at a variety of sites dealing with MS. Some of these are informational, but some sell products and it distresses me each time I come across an ad purporting to cure or dramatically and positively alter the course of MS (or any other chronic disease). I worry on behalf of those I know who have invested financially not to mention spiritually, emotionally and intellectually in these products or practices. We with MS are often people who can ill afford a drain on an already over-burdened income.

There's no denying that almost anything one undertakes by way of treatment may initially show a positive effect. One takes such a step filled with an optimism which in itself can improve one's condition. That's one reason doctors often prescribe a medication during its first, heavily-hyped years thinking "Let's use this drug while it still works." This is part and parcel of the mysterious placebo effect wherein one experiences a positive result (initially) when one believes he is being treated with something efficacious (whether or not there is actually anything useful about the treatment). It's also true that MS has mysteries of its own as a disease and may, in fact, be the end-manifestation of a number of disorders rather than one disease. It's therefore possible that certain substances or practices might be helpful for a group of people but not for another group. Hence (let's all sing) I say "Baclofen" and you say "Zanaflex." You say "Copaxone" and I say "Avonex." Fortunately there are many drugs out there that are actually capable of controlling or reducing symptoms. We each have the exciting and often frustrating task of deciding which drugs and treatments, if any, and in what combination, work best for us.

There is another class of substances and treatments which is sometimes suggested by conventional medical practitioners as being possibly helpful in some cases. These are never suggested as cures for MS but may, as with massage, acupuncture, and physical therapy, relieve certain symptoms or as with vitamins, certain nutritional supplements and a well-balanced diet, generally, provide optimal nutrition for a body at risk. I have no concern for those of us MS patients who try any or all of these things.

But there is also a group of things proposed (mostly online or by word-of-mouth) for which there is no scientific or medical evidence of usefulness. These treatments usually cost money and are often not covered by insurance. The promised results are almost always delivered anecdotally rather than in a controlled study. The ads use quasi-medical jargon, and there is often an anti-conspiratorial tone to the write-ups. I had to be taught the difference between scientific and anecdotal evidence, and here is what I learned.

In a scientific study large groups of people are compared and the difference between the groups must be objectively measured and statistically significant before a product can be said to be helpful. Anecdotal evidence, on the other hand, relies on subjective reporting. There may be a "horse's mouth" statement as in, "I tried product X and I feel better." Or an indirect one as in, "Lots of people bought our product and they say they feel better." Testimonial excerpts are available to back up claims of efficacy. But in neither case is there any measured proof of "betterness" nor any way of tying the betterness directly to the product. One is asked to believe in the product because several people have told you it worked for them, and that's all you have to go on. The quasi-medical jargon helps promote the idea that actual science is involved. Such language may lead one to believe that objective criteria have been applied. There may be a statement that begins "studies show" but you are not told where or how the studies took place. One is usually asked to try the product for 6-8 weeks (minimum) before deciding whether it's working or not. This often requires a considerable and unreimbursable cash outlay. Finally, the conspiracy element may be offered. One reads, for instance, that a product isn't widely known or accepted because the drug companies don't want to admit its helpfulness, or doctors don't like to give up control. I believe most of those selling such products are well-intentioned. They're convinced they've found something that works.

People are entitled to their own opinions. Each of us must bear witness to his own perception. We live in a big, wide, wonderful world and I know there are many possibilities and as-yet-undiscovered wonders. We are individuals each with a chemistry of her own and there are exceptions to every rule. And that's what hooks us that desire to be the one that beats the odds, an optimistic desperation to feel better, to have our old selves back, to realize the potential we each knew before MS took over so much of our experience. We get on with our lives having accepted MS while somewhere inside, (praise be) that very important, life-affirming spark of hope continues to glow. It keeps us moving forward. It helps us face down a "dread disease." But, sometimes, it causes us to grasp at chimerical cures.

I'm really not interested in arguing the usefulness of any particular drug, herb, or spiritual practice whatever. If one feels his money and effort well-spent, I am content that he feels so, and I wish him continued success. I also agree with those who think no stone ought be left unturned in the search for well-being. It's a matter, though, of how the stones are turned and whom we pay for the privilege of turning them. I've certainly tried my share of these things and will probably continue to do so, on and off. I have MS and I want to be better. I've experienced miracles of healing in my own life. Any of us who has suffered, as I have, a bad relapse and then a remission can find herself caught between faith and logic. If such a dramatic turn-around is possible, isn't it also possible that so-and-so's All Banana Diet could cure MS???

So I want to make this statement which I use as a mantra when I find myself reaching for my credit card: When a true, across-the-board cure for MS is discovered it will not be buried in secrecy on the Internet or left to be passed by word of mouth. It will be loudly and prominently announced. Knowledge of its existence will not be suppressed by doctors, drug companies or mainstream media. Those groups will be very happily and successfully engaged in finding ways to profit from the event. For example, if the cure for MS were to be discovered growing in someone's back yard the drug companies would, likely, pay the lucky person umpteen-gazillion dollars to sell them the rights to whatever-it-is. Since none of those things has yet occurred, one can rest assured that whatever easily purchased substance or practice is advertised as the latest "fix" for MS and its symptoms, while it may actually work for a few people and/or for a brief time, is not the cure we've all been waiting for.

Meanwhile, I continue doing whatever feels safe and useful to promote contentment and well-being in my life here on Cripple Creek. I encourage you to do the same in your life. And I'm very grateful to MSWorld for providing a forum for our sharing whatever information each of us gleans in his search for wellness. And be careful out there!