Important Precautions About ementary and Alternative Medicine and

This book provides much detailed information about specific types of complementary and alternative medicine (CAM). This information is intended to assist people in assessing CAM therapies for multiple sclerosis (MS). In addition to this specific information, some general ideas are important to understand and may be helpful in the CAM decision-making process:

■ The information in this book should not be used to "convert" anyone to CAM therapy use, and it should not be taken as a recommendation to use specific types of CAM. Conclusive evidence about the effectiveness and safety of most forms of CAM is not available. Consequently, this book provides information but does not make recommendations. Because this book does not specifically promote the use of CAM, individuals who are not interested in CAM should not feel any need for "conversion" to it. For those individuals who already are interested in CAM, the information in this book should be helpful in assessing the possible effectiveness, safety, and cost of different therapies. Without specific recommendations, the way in which the information is used and the decision about whether to pursue CAM therapy rests with the individual. Ultimately, individuals must decide for themselves about using CAM, and they must assume the risks and responsibilities of pursuing a specific CAM therapy.

■ Be aware of when it is reasonable to pursue CAM. It is reasonable to consider CAM therapy in some situations. For example, it would be reasonable to consider CAM for a symptom that is of low intensity,

Compl such as mild muscle stiffness or mild pain. CAM also may be worth pursuing for a condition in which conventional medical therapy is ineffective or only partially effective. Forms of CAM to consider are those that are possibly effective, are probably safe, are of low or moderate cost, and require only a reasonable amount of effort. On the other hand, severe symptoms, such as prominent muscle stiffness or excruciating pain, or a serious disease process—such as MS—should not be treated solely with CAM. In these situations, it may be reasonable to pursue CAM in addition to conventional therapy. In other words, using CAM in a complementary way may be appropriate. CAM therapy should not be pursued if little or no reliable information is available about effectiveness, safety, or cost. Therapies to avoid are those that are probably ineffective or unsafe or involve high expense or great effort.

■ Have a plan for using CAM. Several steps must be taken when using any form of CAM:

■ Consider conventional medicine first

■ Evaluate and address the reason(s) for wanting to use CAM

■ Obtain accurate information about effectiveness, safety, cost, and effort involved

■ If CAM is chosen, discuss it with your physician, monitor your response, and discontinue the treatment when appropriate

It is important to include a physician in this process because most CAM practitioners do not have a physician's broad knowledge base about the diagnosis and treatment of medical conditions.

■ Realize that information about most forms of CAM is incomplete. Many forms of conventional medical therapy have undergone rigorous testing for effectiveness and safety. In contrast, data are limited for most CAM therapies, especially in terms of specialized studies of people with MS or studies of the effects of therapies on immune-system activity. As a result, often it is only possible to make a "best guess" about the effectiveness and safety of CAM. As more studies are done on CAM, some of these "best guesses" may be found to be incorrect. For example, a therapy that is currently thought to be "possibly effective" or "probably safe" may conceivably be found, after further studies, to be definitely ineffective or definitely unsafe. Thus, a certain amount of risk is involved in pursuing CAM. In terms of slowing down the MS disease process, no "magic cure" exists. No forms of CAM therapy have undergone sophisticated clinical testing similar to that used to prove the efficacy of glatiramer acetate (Copaxone), interferon beta-1b (Betaseron), interferon beta-1a (Avonex and Rebif), mitoxantrone (Novantrone), and natalizumab (Tysabri). As a result, these therapies should be considered by all people with MS before pursuing CAM.

■ Be aware of the "telltale signs " of unreliable forms of CAM. Several features often indicate that a CAM therapy has not been well studied, is provided by an unreliable source, or is being promoted with exaggerated claims. Some of these "telltale signs" are:

■ Heavy reliance on testimonials: The benefits of a therapy sometimes are reported in accounts known as testimonials, which may not be entirely accurate and which describe the treatment response of a single person, as opposed to that of a large, well-studied group of people.

■ Strong claims about effectiveness: Terms such as "amazing" and "miraculous" should raise suspicions. If it sounds too good to be true, it probably is.

■ A single therapy is claimed to be effective for many different medical conditions.

■ The composition of a therapy is "secret."

■ Little or no objective information is available on effectiveness, safety, or cost.

■ Therapy involves inpatient treatment, injections, or intravenous medication.

■ An antiscience or anticonventional medicine attitude prevails: This may be conveyed through claims of "conspiracies" or through the unwillingness of a CAM practitioner to work cooperatively with a physician.

■ Recognize that MS is a disease that involves excessive immune system activity. In some lay books on CAM, MS is described as an immune disorder, and it is then assumed that therapies that stimulate the immune system should be beneficial for MS. Some books may even recommend 5 to 10 supplements that activate the immune system. Using this faulty reasoning, therapies recommended for MS are sometimes the same as those recommended for acquired immunodeficiency syndrome (AIDS) and cancer. Also, the vague term immunomodulator sometimes is used to describe supplements that appear to stimulate the immune system. This approach and these recommendations are inaccurate and potentially dangerous. Although MS is, indeed, an immune disorder, it generally involves too much, not too little, immune-system activity. Consequently, CAM therapies that increase the activity of the immune system could worsen the disease process. In contrast to MS, AIDS and cancer may benefit from treatment that activates the immune system. Thus, in general, immune-stimulating therapies that may be helpful for AIDS and cancer may actually be harmful for MS.

■ Do not confuse scientific evidence with clinical evidence. Potential MS therapies may be evaluated scientifically through "test tube" experiments or by using an animal model of MS known as experimental allergic encephalomyelitis (EAE). The most important (and most expensive and laborious) test of a therapy, however, is to give it to people with MS and to carefully monitor their response. It is essential to realize that scientific studies are imperfect and that therapies that are promising in scientific experiments are not necessarily clinically effective therapies for people with MS. A long list of experimental compounds are effective in suppressing the immune system or treating EAE but are ineffective for treating people with MS. Some therapies (for example, interferon-gamma, lenercept, and antibodies to tumor necrosis factor [TNF]) are effective in treating animal models of MS but actually worsen disease in people with MS.

■ Avoid misconceptions about supplements. Many misconceptions are sometimes promoted by the vendors of supplements. These misconceptions include:

■ Compounds are sometimes claimed to be safe and beneficial if they are "natural." Although some natural compounds are safe and beneficial, some are toxic (for example, the deadly chemicals that are present in poisonous mushrooms and many other plants), and many are not effective therapies for any disorder.

■ Some supplements, especially herbs, are claimed to have beneficial effects and no side effects. Supplements (like prescription medications) that have beneficial effects must contain chemicals that also may potentially produce side effects.

■ More is not necessarily better. It is sometimes believed that the use of high doses of a single supplement or a large number of different supplements is more beneficial than the use of low doses or a single supplement; however, in most cases, supplements in high doses or large numbers are probably not more effective and may, in fact, be more likely to produce side effects.

■ Combinations of supplements with conventional medications have not been fully investigated. Supplements are sometimes taken in addition to conventional medications (for example, evening primrose oil and one of the FDA-approved injectable MS medications); the effectiveness and safety of these "combination therapies" has not been investigated. Notably, some situations exist in which combination therapy is less effective or more likely to produce side effects than single-treatment therapy.

The precautions discussed in this introduction have been incorporated into the discussions in this book. These guidelines should be helpful for evaluating CAM therapies not mentioned here or for assessing CAM therapies for conditions other than MS.

Types of Therapy

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