Complementary and alternative medicine (CAM) is a mixed bag of goodies: Some treatments are beneficial, some won’t hurt you but won’t do much good either, and some are out-and-out dangerous. In the face of all the ads and testimonials (for example, “I threw away my cane!” and “I was totally cured!”), here are some key points to keep in mind:
If a cure for MS had already been found, the National MS Society and other MS organizations would have broadcast it far and wide.
Because not all products and services are equally regulated in this country, you need to know how to evaluate what’s out there.
What you see (on a package, in an ad, and on the Internet) isn’t necessarily what you get.
You can’t believe everything you hear about a CAM treatment. Following are some tips on how to sort through the CAM bag of goodies to find what’s right for you.
Your MS doctor and your pharmacist are your best sources of information about which CAM strategies may be helpful for you without interfering with your prescription medications.
The U.S. Food and Drug Administration (FDA) is responsible for ensuring the safety and effectiveness of a whole host of things, including prescription drugs, medical devices, such as pacemakers or MRI machines, the nation’s food supply, and cosmetics. Even though that may sound like a lot, just remember that the list doesn’t include any of the supplements sold in stores or the treatment strategies prescribed by nonmedical practitioners.
Because CAM interventions aren’t regulated, manufacturers and practitioners are free to say whatever they want about them. Unlike the pharmaceutical companies, for example, who can’t print or say anything about their products that the FDA hasn’t approved, the manufacturers of supplements are free to do as they please.
When you pick up a supplement such as echinacea or St. John’s Wort at the store, you can’t even be sure that the labeling on the outside of the bottle or box matches the contents on the inside, let alone that the claims made about the products are true.
Check out any supplement container and you’ll find a statement that is required by law, which reads “These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure, or prevent any disease.”
The situation is the same with bee venom therapy, magnet therapy, or any other nontraditional therapy. So you, as the consumer, need a way to sort out the claims.
MS CAMs: Sorting out the wheat from the chaff
Who doesn’t want to feel better? Just remember that one person’s experience with a therapy or supplement can be very different from someone else’s. So, one guy’s blog may be filled with reports of success while your buddy from the support group didn’t feel any better and had some really unpleasant side effects from the same product or procedure.
Given the natural ups and downs in the disease course and the fact that MS symptoms tend to come and go unpredictably, determining whether a treatment works is impossible without testing it on a whole lot of people under similar conditions.
MS CAMs: Appreciating the power of the placebo response
Physicians and researchers have repeatedly found that people with a variety of diseases will improve any time they’re given a new treatment — even if the treatment used is a placebo (a fake pill, injection, or other substance that looks and feels just like a the real thing). And the evidence suggests that it’s not all in their heads.
Even though the response may be partially psychological (“I really, really, really want this to work”), some studies have shown that certain chemical changes in the body also contribute to the effect. Unlike the benefits provided by a true treatment, however, the placebo benefits don’t last long.
MS CAMs: Double-blind, placebo-controlled clinical trial
Given the powerful nature of the placebo response, it isn’t all that surprising that many people feel better — at least temporarily — any time they try something new. So, the only way to sort out the placebo response from a true treatment response is to test the treatment in a double-blind, placebo-controlled clinical trial, which sounds a lot more complicated than it is.
Researchers rely on clinical trials to evaluate a potential treatment. Placebo-controlled trials are designed to demonstrate a potential treatment’s superiority to placebo. These trials typically involve two matched groups — one that receives the study drug and one that receives a placebo. All of the study participants — patients, doctors, and research staff — are blinded, meaning that they’re kept from knowing who’s getting the real drug and who’s getting a placebo.
The placebo effect is so strong that a hefty percentage of the placebo group will show some improvement in their condition — sometimes as high as 70 percent. In order for the study drug to “prove” itself the better candidate, the treatment group needs to show greater benefit than the placebo group over the full length of the study. And it needs to provide this benefit without significant side effects.
The disease-modifying therapies that have been approved for use in MS have all been tested successfully using large, blinded, placebo-controlled trials that lasted two to three years. Because most CAM interventions have never been put through this kind of rigorous evaluation, there’s no way to know how safe and effective they really are.
The placebo-effect isn’t a bad thing — feeling better is always a reasonable goal. For instance, even though physicians rely on controlled trials to tell them which treatments offer more than a placebo response, many CAM practitioners try to harness the power of the placebo response to give their patients relief. The goal of treatment in MS, however, is to control the disease and its symptoms safely over the long haul.