Can Complementary Medicine really help with your MS?

Understanding what are Complementary Medicine and Alternative Medicine (CAM) and learning the differences with conventional medicine would be a good starting point to learn about these unconventional treatment options available to you.

• COMPLEMENTARY MEDICINE

Refers to unconventional treatments used in addition to conventional medicine.


In simpler terms, Complementary Medicine and Alternative Medice (CAM) is essentially defined as that which is other than conventional medicine. Another way you can look at this is:

• ALTERNATIVE MEDICINE

Refers to unconventional treatments that are used instead of conventional medicine.

On the other hand you have what we all know as Conventional medicine treatments which can be thought of as what is generally recommended by conventional healthcare practitioners.

In the case of MSers, like you and me, conventional treatments focus on:

1. Medications
2. Rehabilitation (physical therapy, occupational therapy, and speech therapy)
3. Psychotherapy

There are exceptions, of course. For example, conventional doctors will often recommend calcium for the prevention of osteoporosis or fiber supplements to improve constipation. Generally, recommendations concerning medications and rehabilitation are the territory of conventional healthcare practitioners’ recommendations.

So, to make things easier, it may make sense to think of Complementary Medicine as therapies other than medications, rehabilitation, and psychotherapy.

Disease management for lots of MSers involves the use of Integrated medicine which combines conventional and CAM treatments for which there is evidence of safety and effectiveness.

While scientific evidence exists regarding some complementary medicine therapies, for most there are key questions that are yet to be answered through scientific studies — questions such as whether these therapies are safe and whether they work for the purposes for which they are used.

HOW IS COMPLEMENTARY AND ALTERNATIVE MEDICINE (CAM) CATEGORIZED

The following information is based on the thorough job that The National Center for Complementary and Alternative Medicine (NCCAM) did on the vast subject of CAM. Complementary and Alternative therapies may be grouped into five overlapping categories:

1. BIOLOGICALLY-BASED PRACTICES

Use substances found in nature, such as herbs, special diets, or vitamins (in doses outside those used in conventional medicine).

2. ENERGY MEDICINE

Involves the use of energy fields, such as magnetic fields or biofields(energy fields that some believe surround and penetrate the human body).



3. MANIPULATIVE AND BODY-BASED PRACTICES


This category is based on manipulation or movement of one or more body parts. Includes practices such as:

• Chiropractic and osteopathic manipulation
• Massage therapy
• Reflexology
• Rolfing. (Also known as “structural integration,” Rolfing uses soft tissue manipulation to ease pain and stress while improving performance.

4. MIND-BODY MEDICINE

Uses a variety of techniques designed to enhance the mind’s ability to affect bodily function and symptoms. Examples of complementary medicine therapies within this category include:

• Relaxation
• Hypnosis
• Visual imagery
• Meditation
• Yoga
• Biofeedback
• Spirituality.

5. ALTERNATIVE (OR WHOLE) MEDICAL SYSTEMS

These medical systems are built upon complete systems of theory and practice. Often, these systems have evolved separately from and earlier than the conventional medical approach used in the United States.

One example of a whole medical system is traditional Chinese medicine, which includes acupuncture as well as Ayurvedic medicine, one of India’s traditional systems of medicine.

FREQUENCY AND PATTERNS OF CAM USE AMONG PEOPLE WITH MS

A large proportion of MSers use unconventional treatments, yet clinical studies on the efficacy of Complementary Medicine and/or Alternative Medicine (CAM) in these cases have not been done.

The common denominator that I kept running into when working on this subject is that further research on their motivation and on objective effects of Complementary medicine and Alternative Medicine (CAM ) is required.

The last study done in North America suggests that 61.7% of the MS patients reported that they were currently using CAM. Of the therapies utilized, 90.3% were complementary medicine therapies and only 9.7% were alternative choices. Users of complementary medicine were more severely affected by the disease than non-users, but no sociodemographic differences between users and non-users were found.

Concerning the efficacy of complementary medicine, a total of 65.8% of MSers reported improvement, 32.9% said the treatment used had no influence, and 1.3% reported a worsening of their condition. 4.5% of the CAM therapies were accompanied by slight side-effects.

The studies have also shown that MSers who use complementary medicine or alternative therapies, tend to be disproportionately female, better educated, and have a higher income. In the general population as well as among MSers in particular, Complementary and Alternative Medicine is used in a complementary rather than an alternative fashion.

Even though statistics show that the use of complementary medicine and alternative practices among people in general and MSers seem to be pretty similar, there may be significant differences as well.

For example, MSers may visit practitioners of CAM (such as acupuncturists, massage therapists, or chiropractors) more often than people in general. MSers may also use dietary supplements more frequently, and tend to use different kinds of dietary supplements.

WHAT SHOULD YOU LOOK FOR WHEN EVALUATING ANY CAM TREATMENT?

Obviously, not all Complementary and Alternative Medicine (CAM) therapies are effective simply because they are claimed to be effective. One of the most important steps in evaluating these claims – or any other health claim – is to look for the basis of the recommendation. In other words, one of the first questions to ask is, How credible is the evidence in support of the claim?

There are many different levels of evidence and you should understand the relative strengths and weaknesses of each:

1. MINIMALLY PERSUASIVE
• Anecdotal Evidence

The evidence in this category consists in essence of stories. An anecdote by someone you do not know well, who is selling a product, may be considered the weakest evidence of all. Anecdotes may be somewhat more persuasive when told by credible sources, such as close friends, family members, or healthcare providers, but in the end, anecdotes are mere stories and should generally be considered as weak evidence.

• Laboratory Evidence

It is usually done under very restrictive and controlled conditions. For example, a particular treatment studied in the lab may be found to suppress certain immune cells. Despite the fact that such experiments may be highly valuable for certain purposes, it would be unacceptable to simply assume that such a treatment would be good for MSers.

Quite often, actual testing of the compound in MS patients, found that it has no effect whatsoever. For this reason, laboratory evidence is not very persuasive evidence of efficacy in MS.

2. MODERATELY PERSUASIVE/li>

   • Evidence using Animals

   This type of information may be more reliable than anecdotal evidence, but nevertheless cannot be considered highly persuasive. Often, before money is invested in clinical trials involving people, investigators study the effects of a therapy in animals with an MS-like disease known as “EAE” (experimental allergic encephalomyelitis).

   Effectiveness in the animal model of MS, while encouraging, is still not a guarantee for efficacy in folks with MS. In fact, there is a long list of potential MS therapies that looked very promising in animal studies, but in the end proved to be ineffective for treating the disease.

   Notably, a few therapies that were effective in the animal model of MS actually worsened MS in people. For this reason, animal evidence should not be considered highly persuasive. Rather, animal evidence may be considered “hypothesis generating,” useful for generating ideas for more systematic study.

   • Observational Evidence

   Observational studies involve an investigator whose role is limited to observing without intervening. For example, a researcher might note the frequency of MS in regions of the world varies in relation to a particular kind of diet. While interesting, this is not highly persuasive. The variation may have nothing to do with diet but may instead be related to other factors, such as genetics. For this reason, observational evidence is also best considered to be hypothesis generating.

3. MOST PERSUASIVE

Experimental Clinical Evidence

This type of evidence refers to evidence in people and, if it is designed correctly, is often the most convincing kind of evidence. The best type of clinical evidence is obtained through studies known as multi-center, randomized, double-blind, placebo-controlled clinical trials (RCCT).

What this means is that a large number of people are randomly assigned to receive either a placebo or an active treatment (randomized, placebo-controlled); neither the patients nor the evaluators know who received the placebo or the active treatment (double-blind); and the study is carried out at multiple institutions (multi-center).

If people who receive the active treatment do better than those who receive the placebo, in a way that would not be expected to occur by chance alone, then the treatment should probably be accepted as effective. All of the MS medications approved by the Food and Drug Administration (FDA) have been found effective for some measures in at least some groups of people in multi-center RCCTs.

HOW TO DECIDE WHAT AND IF CAM IS FOR YOU?

In an ideal world, it would be more than reasonable to expect all complementary medicine and alternative therapies (CAM) being proven effective in RCCT’s before being used but that is not the case. Unlike the currently FDA approved MS therapies, complementary medicine therapies have limited financial incentives to conduct RCCTs. On the other hand, many have low risk to the user and little cost involved for the treatment.

For example, consider different types of mindbody medicine, such as yoga. Properly done, yoga is safe, inexpensive, and enjoyed by many regardless of disease. If one person with MS finds yoga helpful for MS-related fatigue and recommends it to another person with MS, it may be perfectly reasonable for the second person to try yoga on this basis alone – even though the recommendation was nothing more than a minimally persuasive anecdote.

Whenever you are considering starting any complementary medicine treatment or including any alternative therapy in your life, common sense should play high on your list. Here are some basic questions you should ask before starting any CAM or alternative healing program:

1. What proof or evidence of the treatment working is available?

2. What does the treatment consist of?
3. How invasive is this treatment?
4. How expensive is it?

Finally, any therapy that is claimed to alter the immune system through a biological process warrants additional caution, because it is possible that some immune system changes may worsen MS or antagonize the effects of conventional disease-modifying medications or other conventional treatment being used.

To summarize, when looking at complementary medicne options, the level of evidence that should be demanded before trying a CAM therapy depends on the risks, cost, and effort involved, as well as the inherent appeal of the activity and the way that the treatment works.

In the appropriate situation, it may be reasonable to consider the use of complementary medicine when the risks and costs are low even in the absence of highly persuasive evidence of efficacy.

On the other hand, it is unreasonable to use a form of complementary medicine that has high risks or costs and a difficult-to-measure outcome unless there is highly persuasive evidence of benefit.

EVALUATING THE CREDIBILITY OF INFORMATION ABOUT CAM

We all know that the internet has become a major source of information for consumers of healthcare. Of those with internet access, about 80% have searched broadly for health-related information on the web, 66% have looked for information about specific diseases - MS has been found to be among the twenty most commonly searched diseases - and 28% have looked for information about complementary medicine.

About 25% of those with internet access report that the web has influenced their decision about how to treat their illness. Although increased access to health information is certainly a good thing for consumers, it also creates new responsibilities.

Something that you must consider is that one of these responsibilities is to be able to critically evaluate web-based information because not all information on the internet is accurate. This is true of health information in general, but may be especially true for those looking for information about CAM.

DISTINGUISHING GOOD AND BAD INFORMATION ON THE NET IS DIFFICULT AND THERE IS NO EXACT FORMULA FOR THIS. MAKING SUCH DISTINCTIONS WILL ALWAYS REQUIRE JUDGMENT.

Credibility of Sources

Important aspects of this judgment will include an evaluation of the credibility of the source of the information as well as the content itself. There is no easy way to evaluate the credibility of a source, but, as an example:

1. A panel of MS experts working together on statements within their expertise will usually be very credible.
2. Similarly, well-regarded MS organizations will usually be considered authoritative when speaking about aspects of MS care within their expertise; considerations of sponsorship and bias are also important.
3. A university or government-run website designed for educational purposes may be more reliable than a commercial website designed to sell products and,
4. A number of third-party quality endorsements for health-related websites exist and these may sometimes assist in determining whether information is credible.

   One such health-related website is The Health on the Net Foundation Code of Conduct, One example of a whole medical system is traditional Chinese medicine, which includes acupuncture as well as Ayurvedic medicine, one of India’s traditional systems of medicine.

FREQUENCY AND PATTERNS OF CAM USE AMONG PEOPLE WITH MS

A large proportion of MSers use unconventional treatments, yet clinical studies on the efficacy of Complementary Medicine and/or Alternative Medicine (CAM) in these cases have not been done.

The common denominator that I kept running into when working on this subject is that further research on their motivation and on objective effects of Complementary medicine and Alternative Medicine (CAM ) is required.

The common denominator that I kept running into when working on this subject is that further research on their motivation and on objective effects of Complementary and Alternative Medicine (CAM ) is required.

The last study done in North America suggests that 61.7% of the MS patients reported that they were currently using CAM. Of the therapies utilized, 90.3% were complementary medicine therapies and only 9.7% were alternative choices. Users of complementary medicine were more severely affected by the disease than non-users, but no sociodemographic differences between users and non-users were found.

Concerning the efficacy of complementary medicine, a total of 65.8% of MSers reported improvement, 32.9% said the treatment used had no influence, and 1.3% reported a worsening of their condition. 4.5% of the CAM therapies were accompanied by slight side-effects.

The studies have also shown that MSers who use complementary medicine or alternative therapies, tend to be disproportionately female, better educated, and have a higher income. In the general population as well as among MSers in particular, Complementary and Alternative Medicine is used in a complementary rather than an alternative fashion.

Even though statistics show that the use of complementary medicine and alternative practices among people in general and MSers seem to be pretty similar, there may be significant differences as well.

For example, MSers may visit practitioners of CAM (such as acupuncturists, massage therapists, or chiropractors) more often than people in general. MSers may also use dietary supplements more frequently, and tend to use different kinds of dietary supplements.

WHAT SHOULD YOU LOOK FOR WHEN EVALUATING ANY CAM TREATMENT?

Obviously, not all Complementary and Alternative Medicine (CAM) therapies are effective simply because they are claimed to be effective. One of the most important steps in evaluating these claims – or any other health claim – is to look for the basis of the recommendation. In other words, one of the first questions to ask is, How credible is the evidence in support of the claim?

There are many different levels of evidence and you should understand the relative strengths and weaknesses of each:

1. MINIMALLY PERSUASIVE
• Anecdotal Evidence

The evidence in this category consists in essence of stories. An anecdote by someone you do not know well, who is selling a product, may be considered the weakest evidence of all. Anecdotes may be somewhat more persuasive when told by credible sources, such as close friends, family members, or healthcare providers, but in the end, anecdotes are mere stories and should generally be considered as weak evidence.

• Laboratory Evidence

It is usually done under very restrictive and controlled conditions. For example, a particular treatment studied in the lab may be found to suppress certain immune cells. Despite the fact that such experiments may be highly valuable for certain purposes, it would be unacceptable to simply assume that such a treatment would be good for MSers.

Quite often, actual testing of the compound in MS patients, found that it has no effect whatsoever. For this reason, laboratory evidence is not very persuasive evidence of efficacy in MS.

2. MODERATELY PERSUASIVE/li>

   • Evidence using Animals

   This type of information may be more reliable than anecdotal evidence, but nevertheless cannot be considered highly persuasive. Often, before money is invested in clinical trials involving people, investigators study the effects of a therapy in animals with an MS-like disease known as “EAE” (experimental allergic encephalomyelitis).

   Effectiveness in the animal model of MS, while encouraging, is still not a guarantee for efficacy in folks with MS. In fact, there is a long list of potential MS therapies that looked very promising in animal studies, but in the end proved to be ineffective for treating the disease.

   Notably, a few therapies that were effective in the animal model of MS actually worsened MS in people. For this reason, animal evidence should not be considered highly persuasive. Rather, animal evidence may be considered “hypothesis generating,” useful for generating ideas for more systematic study.

   • Observational Evidence

   Observational studies involve an investigator whose role is limited to observing without intervening. For example, a researcher might note the frequency of MS in regions of the world varies in relation to a particular kind of diet. While interesting, this is not highly persuasive. The variation may have nothing to do with diet but may instead be related to other factors, such as genetics. For this reason, observational evidence is also best considered to be hypothesis generating.

3. MOST PERSUASIVE

Experimental Clinical Evidence

This type of evidence refers to evidence in people and, if it is designed correctly, is often the most convincing kind of evidence. The best type of clinical evidence is obtained through studies known as multi-center, randomized, double-blind, placebo-controlled clinical trials (RCCT).

What this means is that a large number of people are randomly assigned to receive either a placebo or an active treatment (randomized, placebo-controlled); neither the patients nor the evaluators know who received the placebo or the active treatment (double-blind); and the study is carried out at multiple institutions (multi-center).

If people who receive the active treatment do better than those who receive the placebo, in a way that would not be expected to occur by chance alone, then the treatment should probably be accepted as effective. All of the MS medications approved by the Food and Drug Administration (FDA) have been found effective for some measures in at least some groups of people in multi-center RCCTs.

HOW TO DECIDE WHAT AND IF CAM IS FOR YOU?

In an ideal world, it would be more than reasonable to expect all complementary medicine and alternative therapies (CAM) being proven effective in RCCT’s before being used but that is not the case. Unlike the currently FDA approved MS therapies, complementary medicine therapies have limited financial incentives to conduct RCCTs. On the other hand, many have low risk to the user and little cost involved for the treatment.

For example, consider different types of mindbody medicine, such as yoga. Properly done, yoga is safe, inexpensive, and enjoyed by many regardless of disease. If one person with MS finds yoga helpful for MS-related fatigue and recommends it to another person with MS, it may be perfectly reasonable for the second person to try yoga on this basis alone – even though the recommendation was nothing more than a minimally persuasive anecdote.

Whenever you are considering starting any complementary medicine treatment or including any alternative therapy in your life, common sense should play high on your list. Here are some basic questions you should ask before starting any CAM or alternative healing program:

1. What proof or evidence of the treatment working is available?

2. What does the treatment consist of?
3. How invasive is this treatment?
4. How expensive is it?

Finally, any therapy that is claimed to alter the immune system through a biological process warrants additional caution, because it is possible that some immune system changes may worsen MS or antagonize the effects of conventional disease-modifying medications or other conventional treatment being used.

To summarize, when looking at complementary medicne options, the level of evidence that should be demanded before trying a CAM therapy depends on the risks, cost, and effort involved, as well as the inherent appeal of the activity and the way that the treatment works.

In the appropriate situation, it may be reasonable to consider the use of complementary medicine when the risks and costs are low even in the absence of highly persuasive evidence of efficacy.

On the other hand, it is unreasonable to use a form of complementary medicine that has high risks or costs and a difficult-to-measure outcome unless there is highly persuasive evidence of benefit.

EVALUATING THE CREDIBILITY OF INFORMATION ABOUT CAM

We all know that the internet has become a major source of information for consumers of healthcare. Of those with internet access, about 80% have searched broadly for health-related information on the web, 66% have looked for information about specific diseases - MS has been found to be among the twenty most commonly searched diseases - and 28% have looked for information about complementary medicine.

About 25% of those with internet access report that the web has influenced their decision about how to treat their illness. Although increased access to health information is certainly a good thing for consumers, it also creates new responsibilities.

Something that you must consider is that one of these responsibilities is to be able to critically evaluate web-based information because not all information on the internet is accurate. This is true of health information in general, but may be especially true for those looking for information about CAM.

DISTINGUISHING GOOD AND BAD INFORMATION ON THE NET IS DIFFICULT AND THERE IS NO EXACT FORMULA FOR THIS. MAKING SUCH DISTINCTIONS WILL ALWAYS REQUIRE JUDGMENT.

Credibility of Sources

Important aspects of this judgment will include an evaluation of the credibility of the source of the information as well as the content itself. There is no easy way to evaluate the credibility of a source, but, as an example:

1. A panel of MS experts working together on statements within their expertise will usually be very credible.
2. Similarly, well-regarded MS organizations will usually be considered authoritative when speaking about aspects of MS care within their expertise; considerations of sponsorship and bias are also important.
3. A university or government-run website designed for educational purposes may be more reliable than a commercial website designed to sell products and,
4. A number of third-party quality endorsements for health-related websites exist and these may sometimes assist in determining whether information is credible.

   One such health-related website is The Health on the Net Foundation Code of Conduct, which specifies eight principles intended to improve information standards and disclosures. Although participation is voluntary and the number of participating sites small, sites displaying the foundation’s symbol are probably of relatively high quality. Another third-party quality endorsement includes The Internet Health Care Coalition.

When evaluating content, perhaps the most important consideration is whether the authors describe the facts upon which conclusions are based. References should usually be made available and should generally be to original sources. If the website describes treatments, priority should be given to certain kinds of evidence, as described earlier.

Ideally, the content should be dated because information can quickly become outdated. There are other considerations too, of course. For example, be highly suspicious of fanciful claims such as a “miracle cure,” “quick cure,” or “new discovery.”

The idea that someone has found a cure for MS with secret products and without publicity in the mainstream media (newspapers, television news) is quite unlikely. For more information on evaluating web content, please see The Medical Library Associations (MLA).

Although this section has focused on internet claims, many of the same principles apply to evaluating complementary medicine or alternative therapy claims obtained from books or from individuals. Pay careful attention to the nature of the content and the credibility of the source and stay away from “miracle cures.”

SPECIAL CONSIDERATIONS RELATING TO BIOLOGICALLY BASED FORMS OF CAM

Back in 1994 congress passed the Dietary Supplement Health and Education Act, or DSHEA (often pronounced “de-shay”). This legislation set up a new framework for the Food and Drug Administration (FDA) in regards to its regulation functions of dietary supplements, such as herbs and vitamins.

This new regulations framework is much more limited than it is for other products it regulates, such as prescription and over-the-counter drugs. This means that consumers – like you and me - and manufacturers have an greater than before responsibility for evaluating the safety of dietary supplements and for determining the truthfulness of label claims.

Safety will depend, in part, on the quality of the ingredients in a particular supplement as well as the particular manufacturing processes used. For this reason, you should pay attention to the reputation of the manufacturer or distributor.

Supplements made by a nationally known food and drug manufacturer,for example, may be more likely to have been made under tight controls because these companies already have high manufacturing standards in place.

Individuals should realize that the term “natural” appearing on a label does not guarantee that a product is safe. In fact, some supplements are inherently unsafe, such as comfrey or chaparral, and should be avoided. Click here to visit The FDA website to see a list of some dangerous supplements.

Another difficulty with dietary supplements or other forms of complementary medicine treatments is that many of them involve ingesting substances is that medication interactions are possible. However, often there will be no information about whether a particular substance interferes with the medications used in MS. There is no easy way around this problem. You should factor in this uncertainty and, to minimize the risk as much as possible, consult your healthcare provider.

HERE ARE SOME MORE RESOURCES AVAILABLE TO YOU

You can visit any of the following Websites for more information:

The official website of The Multiple Sclerosis Association of America, provides general information about Multiple Sclerosis (MS).

It also includes a host of other useful information, such as: MSAA’s publications; MSAA’s regional events and activities. MSAA programs and services; news updates; and links to additional MS-related websites. MSAA’s Helpline consultants may be contacted by calling (800) 532-7667.

The Rocky Mountain MS Center contains MS-specific information about CAM therapies. Registration allows for participation in surveys to further research into CAM and MS.

The FDA is a good source of information about dietary supplements in particular

The National Multiple Sclerosis Society (NMSS) offers information on Complementary Medicine therapies and related issues that may be of interest to MSers

The Federal Trade Commission is a good site to access to see if there are any fraudulent claims or consumer alerts regarding any therapy.

The International Bibliographic Information on Dietary Supplements (IBIDS) maintained by the National Institute of Health Office of Dietary Supplements (ODS) provides access to peer-reviewed scientific articles on CAM therapies.

ADDITIONAL INFORMATION AND VIDEOS

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