Multiple sclerosis (MS) is a common disease of the nervous system. Most people with MS use some form of conventional medical treatment. In addition, many people also use complementary and alternative medicine (CAM), which refers to unconventional medical practices that are not part of mainstream medicine. Despite the fact that CAM is used frequently and MS is a common neurologic disorder, it is difficult to obtain accurate and unbiased information specific to the use of CAM for MS.
Before considering the relevance of unconventional medicine to MS, it is important to understand the approach of conventional medicine to this disease. There have been dramatic advances recently in the field of MS research. Through scientific studies, we now have an increased understanding of the disease process itself. Also, clinical studies with experimental medications have yielded new therapies that slow the progression of MS and control MS-related symptoms, such as stiffness or pain.
Complementary and alternative medicine (CAM) is a controversial area. In fact, even the term and its definition are not entirely agreed upon. Besides complementary and alternative medicine, other frequently used terms are unconventional medicine and integrative medicine. The term complementary medicine refers to therapies that are used in addition to conventional medicine, while the term alternative medicine is used to describe treatment that is used instead of conventional medicine.
There are many different definitions of CAM. These definitions frequently state what CAM “is not” as opposed to what it “is.” For example, in the United States, CAM is sometimes defined as medical therapy that is not widely taught at American medical schools or is not generally available in American hospitals. This definition recently has become less clear because CAM is now part of the curricula of many medical schools and is provided more often in the medical community. Also, as clinical trials are done to evaluate the effectiveness of CAM therapies, some forms of CAM may eventually become components of conventional medicine.
CAM includes a vast number of therapies. Multiple schemes have been proposed for categorizing these diverse and often unrelated therapies. One classification scheme and some representative examples of therapies are:
- Biologically based therapies: diets, herbs, vitamins, other supplements, bee venom therapy, hyperbaric oxygen
- Alternative medical systems: acupuncture, Ayurveda, homeopathy
- Lifestyle and disease prevention: exercise
- Mind-body medicine: relaxation methods, biofeedback, t’ai chi, yoga
- Manipulative and body-based systems: chiropractic, massage, reflexology
- Biofield medicine: therapeutic touch
- Bioelectromagnetics: magnets, pulsing electromagnetic fields
Many studies have documented that CAM is used frequently in the United States. One well-known large study was conducted in 1997 and was reported in the medical literature in 1998 by Dr. David Eisenberg (1). In this study of more than 2,000 people, approximately 42 percent used some form of CAM. It was estimated that 629 million visits were made to practitioners of alternative medicine; this was greater than the number of visits to all primary care physicians in that year. Nearly 20 percent of people were taking some type of herb or vitamin along with a prescription medication. Most people used CAM without the supervision of a CAM practitioner, and most people did not discuss its use with their physician. As a result, nearly half of the people were using CAM without the advice of a physician or a CAM practitioner. This demonstrates the need for increased patient–physician communication in this area.
This 1997 study was a follow-up to a previous study conducted in 1990 (2). From 1990 to 1997, CAM use increased by 25 percent, and the yearly visits to CAM practitioners increased by 47 percent. Interestingly, there was no change in the percentage of people who did not discuss CAM use with their physicians; approximately 60 percent did not discuss CAM use with their physicians in both studies.
The 1990 and 1997 studies found a high use of CAM in people with chronic conditions such as MS. In addition, the 1997 study found that CAM use was relatively high in women and in people between the ages of 35 and 49; this sex and age distribution is similar to that of many people with MS. These findings suggest that CAM use may be more prevalent in people with MS than in the general population.
CAM Use in MS
Several studies have evaluated CAM use in MS. A large published study was conducted in Massachusetts and California in the 1990s (3). Approximately 60 percent of people had used CAM, and, on average, people used two to three different types of CAM. We conducted a similar survey in 1997 at the Rocky Mountain MS Center and found that approximately two-thirds of those who responded to the survey used CAM. These studies indicate that the majority, or approximately two-thirds, of people with MS use some form of CAM.
A different type of study, reported in 1999, examined visits to CAM practitioners by people with MS (4). This study did not evaluate overall CAM use, and, of note, most people who use CAM do not visit a practitioner. When CAM use in this study is compared with CAM use in the general population study of Dr. David Eisenberg, it appears that people with MS visit CAM practitioners about 40 percent more often than does the general population. Overall, these studies indicate that CAM use is higher in people with MS than in the general population.
In surveys of people with MS and of the general population, a consistent finding is that CAM is usually used in conjunction with conventional medical therapy. In other words, CAM is usually used in a complementary way. Approximately 90 percent of people who use CAM also use conventional medicine. This leaves a relatively small fraction of people who use CAM in a truly alternative manner.
It is sometimes erroneously believed that there are only two preference groups for medical therapy, one group that uses only conventional therapy only and another group that uses only CAM therapy. In fact, there is a third “mixed” group that combines conventional medicine and CAM. Importantly, the studies of CAM use in people with MS demonstrate not only that this “mixed” group exists but also that it actually appears to represent the majority.
With a large number of people with MS pursuing CAM therapies, it is essential for people to be knowledgeable about the therapies they choose and for physicians, other healthcare providers, and CAM practitioners to be aware that multiple conventional and CAM therapies are in use and that interactions among them are possible.
People with MS use a wide range of CAM therapies. Those that appear to be especially popular include massage, dietary supplements, diets, chiropractic medicine, acupuncture, meditation and guided imagery, and yoga. Reasons for people with MS to pursue CAM are as varied as the different CAM modalities used. In the Massachusetts and California survey (3), the most common reason for choosing a particular CAM therapy was that a person had heard of another person benefiting from that therapy. Two other popular reasons were that mainstream medicine did not relieve symptoms or did not have a cure for the disease.
Information About CAM and MS.
For CAM in general, the information available to the general public is vast but of variable quality. For CAM that is relevant to MS, the amount of information is limited and the quality is also variable. To attempt to understand the type of information that is available on CAM and MS, we conducted an informal survey of the popular literature on CAM at the Rocky Mountain MS Center. At two local bookstores, we found 50 CAM books written for a lay audience.
Two-thirds of these books had sections on MS. In some books, MS was incorrectly defined as a form of muscular dystrophy. Other books made the erroneous—and potentially dangerous—statement that, because MS is an immune disorder, it is important to take supplements that stimulate the immune system. In fact, MS is an immune disorder, but it is characterized by an excessively active immune system; thus, immune-stimulating supplements may actually be harmful. On average, the CAM books recommended five or six therapies for MS. In 20 percent of them, 10 or more therapies were recommended. It was rare for books to discourage the use of any CAM treatment. Interestingly, none had the same recommended therapies. In general, therapies that are used more frequently by patients appear to be those that are recommended more often in books; the fact that this information is full of inaccuracies is therefore troubling.
In addition to books, information about CAM can be obtained from vendors of products and CAM practitioners. Unfortunately, product vendors, such as people who sell supplements, often exaggerate claims about their products. Practitioners of CAM (as well as product vendors) sometimes have limited experience with MS and are not certain how their therapy relates to such a specific and complex disease process.
Physicians and other mainstream healthcare providers are another potential source of information about CAM. Unfortunately, this group generally is not trained or experienced in CAM use and, for a variety of reasons, may be reluctant to become involved in this area. Even for conventional healthcare providers who are interested in CAM, only limited objective and accessible MS-specific information is currently available in the medical literature.