1. Complementary and Alternative Medicine (CAM) in ALS/MND Practical Strategies to Differentiate Positive Integrative Medicine from Fraudulent Health Claims Amy Ellis, MPH, RD, LDN, CNSD Carolinas Neuroscience and Spine Institute Carolinas Medical Center Charlotte, North Carolina

2. What is “Complementary and Alternative Medicine”? • Difficulties in defining CAM: • Definitions differ between clinics, countries, and cultures • Definitions are constantly changing. Some therapies once considered to be “alternative” are now considered to be conventional therapies. • Common definition used in medical literature in the US: • “those practices neither taught widely in United States medical schools nor generally available in United States hospitals” • Eisenberg DM, et al. 1998 • “treatments not taught as part of the medical undergraduate curriculum”British Medical Association 1997

3. “CAM is a group of diverse medical and health care systems, practices, and products that are not presently considered to be part of conventional medicine.”

4. CAM Therapies Recognized by the US National Center for Health Statistics

5. Source: US Department of Health and Human Services, September 2004

6. Why Do Our Patients Pursue CAM? • Holism = appreciation for the balance of body, mind, and spirit • Patient-centered treatment vs. paternalistic medicine • Morbidity of side effects associated with conventional medicines • More time with practitioners • Lack of a “cure” for MND • Therapies perceived as “more natural” • Marketing

7. Why Should We Consider CAM? • Holism • Patient-centered paradigm • “An informed patient is the most effective patient.”Dr. Forbes H Norris, Jr. • Multifactorial approach to a disease of multifactorial etiology • Evidence that complementary medicine can complement our standard therapies for both aggressive and palliative care Neurology Speech Therapy Patient Social Work Nutrition

8. Potentially Fraudulent Health Claims in the Domain of CAM • Chelation Therapy • Colon Hydrocleansing • Restrictive Diets • Potentially Dangerous Dietary Supplements

10. Dietary Supplements “Contain a dietary ingredient intended to supplement the diet. Examples of dietary ingredients include vitamins, minerals, herbs (as single herbs or mixtures), other botanicals, amino acids, and dietary substances such as enzymes and glandulars.” United States Dietary Supplement Health and Education Act (DSHEA) 1994

11. Buyer Beware: Dangerous Dietary Supplements!!! Colloidal Silver Advertised as a detoxification treatment for cancers, AIDS, and MND. No evidence of benefit but danger of a condition called “argyria,” an irreversible silver accumulation in skin and soft tissues. Branched Chain Amino Acids (leucine/isoleucine/valine) and L-Threonine Studies have shown no beneficial effects, but increased respiratory compromise in MND. (Tandan R et al., 1996; Testa D et al., 1989) Dolomite Calcium/magnesium supplement. May contain lead, arsenic, mercury and other heavy metals. Coral Calcium Advertised to treat or cure multiple diseases by making the blood pH alkaline. Laboratory analysis has shown that coral calcium supplements contain significant amounts of lead and other heavy metals. Limu Promoted to treat joint pain, neurological diseases, and cancer. Active ingredients Bladderwack and Laminaria can contain high concentrations of heavy metals and iodine. High doses of the ingredients Mountain Ash and Pau D’Arco have been associated with kidney damage and other toxicities. Aristolochic Acid Advertised for relief of joint pain. Risk of permanent renal damage.

12. Buyer Beware : Dangerous Dietary Supplements!!! Amygdalin (Laetrile, Vitamin B-17) Used for thousands of years in TCM to treat respiratory ailments. Can produce a metabolite of cyanide. Evidence of lethal blood cyanide levels in several patients (Sayre JW et al., 2006; Moertel CG et al., 1982). Should only be used under close supervision of experienced herbalists. Guarana, Yohimbe, and Ephedra/Ma Huang/Eptionin Used as energy boosters. May dangerously raise blood pressure and heart rate in susceptible populations. Some over-the-counter products contain high doses of these stimulants. Kava Kava Used as an overall body tonic. Can cause liver damage and interactions with antidepressants. Comfrey Used for wound healing. Carcinogenic and can cause liver damage. Pokeweed and Sassafras Used as overall body tonics. Carcinogenic. Germander Used as an energy enhancer. Can cause liver damage Coltsfoot Used as a cough suppressant. Carcinogenic.

13. “Let thy food be thy medicine and thy medicine be thy food.” Hippocrates (460-377 B.C.) • Risks associated with overly restrictive diets: • Inadequate energy/kilocalories weight loss • Elimination of essential nutrients • Compromised quality of life • Cost

15. Open-minded Skepticism: Educating Our Patients to be Wise Consumers • Buyer Beware of: • Claims that sound too good to be true and terms such as “miraculous cure” and “secret ingredients.” • Products or diagnostic tools advertised as quick and effective for a wide variety of ailments. • Advertisements based on amazing testimonials of a few people. • Advertisements that claim products or therapies are “clinically proven” but lack references to support those claims. • “Limited time offers” and advance payment requirements. • Health information from websites that are selling products or products sold by multilevel marketing pyramid models.

16. Open-minded Skepticism: • Educating our Patients to be Wise Consumers • Discuss CAM with your healthcare provider, and beware of practitioners who discourage you from doing so. • Investigate the training, education, licenses, and certifications of all of your healthcare providers. Ask how frequently he/she treats patients with MND. • Treat dietary supplements like medications. Keep an updated list of all of your supplements and dosages. Remember that “all natural” doesn’t necessarily mean “all safe.”

17. Websites for Patients and Providers • www.hon.ch: Health on the Net Foundation. HON is a non-profit, non-governmental organization accredited to the Economic and Social Council of the United Nations. • www.consumerlab.com: Conducts independent laboratory testing of dietary supplements. • www.usp.com: United States Pharmacopeia conducts verification programs for dietary supplement ingredients and products. These programs involve independent testing and review to verify ingredient and product integrity, purity, and potency for manufacturers who choose to participate. • www.naturaldatabase.com: Offers evidence-based literature reviews of dietary supplements. • www.nccam.nih.gov: The National Center for Complementary and Alternative Medicine (NCCAM) is the US Government's lead agency for scientific research on CAM. • www.fih.org.uk: The Prince of Wales Foundation for Integrated Health. Extensive information for consumers and healthcare professionals. • www.quackwatch.com: Site allows for queries of treatments, supplements, and providers suspected of fraudulent claims.

18. Open-minded Skepticism: • Examining our own Attitudes and Approaches to CAM • Educate ourselves as to the most common CAM modalities and supplements used by our patients. • Admit what we don’t know. “I do not pretend to know what ignorant men are sure of.” Clarence Darrow • Honestly communicate what we do know. • Primum non nocere, "First, do no harm." • Hippocrates • Collaborate with reputable CAM practitioners in our communities.

19. “There are two ways to slide easily through life: to believe everything you hear or to doubt everything. Both ways save us from thinking.” Alfred Korybski “None of us is as smart as all of us.”Ken Blanchard