March 2007

                                                                                                                         Vol. IV, Issue #38

Ribbon          Bergen CFS-FM Support Group Newsletter

Meeting Report

The meeting was held on Sunday March 18th.  Those in attendance viewed the Award winning documentary I Remember Me which was produced by Kim Snyder.  The film is a seven year chronicle her own CFS as she researches the history of CFS through interviews with patients and physicians.  The interviewees include movie producer Blake Edwards and Olympian Michele Akers. If you have not had the opportunity to see this film, you might consider looking for it. It was distributed by Zeitgeist Films. For those who are NJCFSA members, it is available for borrowing(VHS format Library # V72) from that library with a small mailing fee. Details are available at www.njcfsa.org.

 

If any of you receive Fashion Bug flyers in the mail, you may have noted that inside the back cover of a recent flyer, there was a column on Fibromyalgia.  It was written by the Chairman & CEO of The Charming Shoppes Family of Stores which include Fashion Bug, Lane Bryant and Catherine.  Bravo for this outreach to their clients.  A letter of thanks has been sent to the Chairman and CEO.  She was also encouraged to consider writing a similar article on CFS in the future.

NJCFSA Spring Conference

The spring conference was held on Saturday March 10th at Robert Wood Johnson Hospital.  It was nice to see some of you there. This was a very special occasion – a joint conference with the CFIDS Association of America (CAA).  As partners with the CDC in a National Awareness Campaign, the CAA brought the photo exhibit, The Faces of CFS, to the venue as part of the event.  Three of the faces are from NJ and two of them addressed those assembled.  Jackie Niederle (NJCFSA Secretary) shared how CFS changed her life and how she had to alter her dreams because of it.  Brian Bernard (whose mother is on the NJCFSA Board) is 13 years old yet speaks with the wisdom and wit of an adult.  He held everyone captivated and received a standing ovation for his outstanding presentation.  Brian was also presented an award of appreciation for his participation in the photo exhibit and representing young people with CFS.  The conference will be available on disk to members of the NJCFSA in the near future.

In The News

http://www.intelihealth.com/IH/ihtIH/EMIHC277/8513/31412/311996.html?d=dmtContent  

Aetna InteliHealth

National Center for Complementary and Alternative Medicine

Are You Considering Using Complementary and Alternative Medicine?

·         For More Information

Introduction

Decisions about your health care are important — including decisions about whether to use complementary and alternative medicine (CAM). The National Center for Complementary and Alternative Medicine (NCCAM) has developed this fact sheet to assist you in your decision making about CAM. It includes frequently asked questions, issues to consider, and a list of sources for further information.

Key Points

Take charge of your health by being an informed consumer. Find out what scientific studies have been done on the safety and effectiveness of the CAM treatment in which you are interested.

Decisions about medical care and treatment should be made in consultation with a health care provider and based on the condition and needs of each person. Discuss information on CAM with your health care provider before making any decisions about treatment or care.

If you use any CAM therapy, inform your primary health care provider. This is for your safety and so your health care provider can develop a comprehensive treatment plan.

If you use a CAM therapy provided by a practitioner, such as acupuncture, choose the practitioner with care. Check with your insurer to see if the services will be covered.

 

 

Questions to ask when evaluating Web site information:

Who runs the site? Is it government, a university, or a reputable medical or health-related association? Is it sponsored by a manufacturer of products, drugs, etc.? It should be easy to identify the sponsor.

What is the purpose of the site? Is it to educate the public or to sell a product? The purpose should be clearly stated.

What is the basis of the information? Is it based on scientific evidence with clear references? Advice and opinions should be clearly set apart from the science.

How current is the information? Is it reviewed and updated frequently?

Questions and Answers

1. What is complementary and alternative medicine?

Complementary and alternative medicine (CAM) is a group of diverse medical and health care systems, practices, and products that are not presently considered to be a part of conventional medicine.1 People use CAM therapies in a variety of ways. CAM therapies used alone are often referred to as "alternative." When used in addition to conventional medicine, they are often referred to as "complementary." The list of what is considered to be CAM changes continually, as those therapies that are proven to be safe and effective become adopted into conventional health care and as new approaches to health care emerge.

2. How can I get reliable information about a CAM therapy?

It is important to learn what scientific studies have discovered about the therapy in which you are interested. It is not a good idea to use a CAM therapy simply because of something you have seen in an advertisement or on a Web site or because someone has told you that it worked for them. (See sidebar for some tips on evaluating the information you see on a Web site.) Understanding a treatment's risks, potential benefits, and scientific evidence is critical to your health and safety. Scientific research on many CAM therapies is relatively new, so this kind of information may not be available for every therapy. However, many studies on CAM treatments are under way, including those that NCCAM supports, and our knowledge and understanding of CAM is increasing all the time. Here are some ways to find scientifically based information:

3. Are CAM therapies safe?

Each treatment needs to be considered on its own. However, here are some issues to think about when considering a CAM therapy.


The manufacturer of a dietary supplement is responsible for ensuring the safety and effectiveness of the product before it is sold. The U.S. Food and Drug Administration (FDA) cannot require testing of dietary supplements prior to marketing. However, while manufacturers are prohibited from selling dangerous products, the FDA can remove a product from the marketplace if the product is dangerous to the health of Americans. Furthermore, if in the labeling or marketing of a dietary supplement a claim is made that the product can diagnose, treat, cure, or prevent disease, such as "cures cancer," the product is said to be an unapproved new drug and is, therefore, being sold illegally. Such claims must have scientific proof.

4. How can I determine whether statements made about the effectiveness of a CAM therapy are true?

Statements that manufacturers and providers of CAM therapies may make about the effectiveness of a therapy and its other benefits can sound reasonable and promising. However, they may or may not be backed up by scientific evidence. Before you begin using a CAM treatment, it is a good idea to ask the following questions:

5. Are there any risks to using CAM treatments?

Yes, there can be risks, as with any medical therapy. These risks depend upon the specific CAM treatment. The following are general suggestions to help you learn about or minimize the risks.

6. Are CAM therapies tested to see if they work?

While some scientific evidence exists regarding the effectiveness of some CAM therapies, for most there are key questions that are yet to be answered through well-designed scientific studies — questions such as whether they are safe, how they work, and whether they work for the diseases or medical conditions for which they are used.

NCCAM is the Federal Government's lead agency on scientific research of CAM. NCCAM supports research on CAM therapies to determine if they work, how they work, whether they are effective, and who might benefit most from the use of specific therapies.

7. I am interested in a CAM therapy that involves treatment from a practitioner. How do I go about selecting a practitioner?

Here are a few things to consider when selecting a practitioner.

8. Can I receive treatment or a referral to a practitioner from NCCAM?

NCCAM is the Federal Government's lead agency dedicated to supporting research on CAM therapies. NCCAM does not provide CAM therapies or referrals to practitioners.

9. Can I participate in CAM research through a clinical trial?

NCCAM supports clinical trials (research studies in people) of CAM therapies. Clinical trials of CAM are taking place in many locations worldwide, and study participants are needed. To find trials that are recruiting participants, go to the Web site nccam.nih.gov/clinicaltrials. You can search this site by the type of therapy being studied or by disease or condition.

 

For More Information

NCCAM Clearinghouse

Toll-free: 1-888-644-6226
International: 301-519-3153
TTY (for deaf or hard-of-hearing callers): 1-866-464-3615
Web site:
nccam.nih.gov
Address: NCCAM Clearinghouse, P.O. Box 7923, Gaithersburg, MD 20898-7923
Fax: 1-866-464-3616
Fax-on-Demand Service: 1-888-644-6226
NCCAM is dedicated to exploring complementary and alternative medical practices in the context of rigorous science, training CAM researchers, and disseminating authoritative information to the public and professionals.

NIH Office of Dietary Supplements (ODS)

Web site: ods.od.nih.gov
Address: 6100 Executive Blvd., Bethesda, MD 20892-7517

The ODS, whose mission is to explore the potential role of dietary supplements to improve health care, promotes the scientific study of dietary supplements through conducting and coordinating scientific research and compiling and disseminating research results. ODS provides all its public information through its Web site. One of its services is the International Bibliographic Information on Dietary Supplements (IBIDS) database, at
ods.od.nih.gov/databases/ibids.html.

CAM on PubMed

Web site: www.nlm.nih.gov/nccam/camonpubmed.html

CAM on PubMed, a database accessible via the Internet, was developed jointly by NCCAM and the National Library of Medicine (NLM). It contains bibliographic citations to articles in scientifically based, peer-reviewed journals on CAM. These citations are a subset of the NLM's PubMed system that contains over 12 million journal citations from the MEDLINE database and additional life science journals important to health researchers, practitioners, and consumers. CAM on PubMed displays links to publisher Web sites; some sites offer the full text of articles.

ClinicalTrials.gov

Web site: clinicaltrials.gov

ClinicalTrials.gov provides patients, family members, health care professionals, and members of the public access to information on clinical trials for a wide range of diseases and conditions. The National Institutes of Health (NIH), through its National Library of Medicine, has developed this site in collaboration with all NIH Institutes and the U.S. Food and Drug Administration. The site currently contains more than 6,200 clinical studies sponsored by NIH, other Federal agencies, and the pharmaceutical industry in over 69,000 locations worldwide.

U.S. Food and Drug Administration (FDA)

Toll-free: 1-888-INFO-FDA (1-888-463-6332)
Web site:
www.fda.gov

FDA's mission is to promote and protect the public health by helping safe and effective products reach the market in a timely way, and monitoring products for continued safety after they are in use. To report serious adverse events or illnesses related to FDA-regulated products, such as drugs, medical devices, medical foods, and dietary supplements, contact MedWatch:

Toll-free: 1-800-FDA-1088
Fax: 1-800-FDA-0178
Web site:
www.fda.gov/medwatch/report/consumer/consumer.htm

To report a general complaint or concern about food products, including dietary supplements, you may contact the consumer complaint coordinator at the FDA District Office nearest you. Visit
www.fda.gov/opacom/backgrounders/complain.html to find the telephone number of your district office or check in the government listings in your phone book.

Federal Trade Commission (FTC)

Toll-free: 1-877-FTC-HELP (1-877-382-4357)
Web site:
www.ftc.gov

The FTC works for the consumer to prevent fraudulent, deceptive, and unfair business practices in the marketplace and to provide information to help consumers spot, stop, and avoid them. To file a complaint or to get free information on consumer issues, call toll-free 1-877-FTC-HELP, or use the online complaint form found at
www.ftc.gov. Consumers who want to learn how to recognize fraudulent or unproved health care products and services can learn more at www.ftc.gov/cureall.

National Library of Medicine (NLM)

Toll-free: 1-888-346-3656
Web site:
www.nlm.nih.gov
Address: 8600 Rockville Pike,
Bethesda, MD 20894
Fax: 301-402-1384

NLM is the world's largest medical library. Services include MEDLINE, NLM's premier bibliographic database covering the fields of medicine, nursing, dentistry, veterinary medicine, the health care system, and preclinical science. MEDLINE contains indexed journal citations and abstracts from more than 4,600 journals published in the
United States and more than 70 other countries. MEDLINE is accessible through NLM's PubMed system at pubmed.gov. NLM also maintains DIRLINE (dirline.nlm.nih.gov), a database that contains locations and descriptive information about a variety of health organizations, including CAM associations and organizations.


1 Conventional medicine is medicine as practiced by holders of M.D. (medical doctor) or D.O. (doctor of osteopathy) degrees and by their allied health professionals, such as physical therapists, psychologists, and registered nurses. Other terms for conventional medicine include allopathy; Western, mainstream, orthodox, and regular medicine; and biomedicine. Some conventional medical practitioners are also practitioners of CAM.

2 "Dietary supplements" were defined by Congress in a law passed in 1994. A dietary supplement is a product (other than tobacco) taken by mouth that contains a "dietary ingredient" intended to supplement the diet. Dietary ingredients may include vitamins, minerals, herbs or other botanicals, amino acids, and substances such as enzymes, organ tissues, and metabolites. Under current law, dietary supplements are considered foods, not drugs.

NCCAM has provided this material for your information. It is not intended to substitute for the medical expertise and advice of your primary health care provider. We encourage you to discuss any decisions about treatment or care with your health care provider. The mention of any product, service, or therapy in this information is not an endorsement by NCCAM.

NCCAM Publication No. D167
August 2002
Current as of
January 4, 2005

 

In the News, Part 2

A Scorecard on Supplements

February 26, 2007

By Harvey B. Simon, M.D.
Harvard Medical School

Dietary supplements, which include vitamin, mineral and herbal products, come under a set of U.S. Food and Drug Administration (FDA) regulations called the Dietary Supplement Health and Education Act of 1994. They're different than the regulations that cover "conventional" foods and prescription and over-the-counter drugs.

Under these regulations the government has little control over the purity, potency, safety, or effectiveness of supplements. Makers of dietary supplements don't have to get FDA approval before selling them. As a result, the supplement industry has been able to hype their products with little need to prove their claims.

Not surprisingly, supplements have become wildly popular. According to recent estimates, about 20% of all American adults take herbal supplements on a regular basis, and over 25% take at least one vitamin.

Back to top

Studying What Supplements Can and Can't Do

In most cases, scientific investigations of supplements start with observational studies. Researchers compare the health of folks who take a particular supplement with the health of people who don't take the supplement. It's an important effort, but the results can be misleading because they may not account for subtle but important differences between the groups. And observational studies can never establish cause-and-effect relationships.

A more accurate study is a randomized clinical trial. Volunteers are assigned by chance to take either the supplement or an identical-looking placebo ("dummy pill") while researchers track their health. In the best studies, neither the volunteers nor the researchers know who is getting the real thing until the code is broken at the end of the trial.

Randomized clinical trials have opened our eyes to what supplements can and can't do. Unfortunately, most of what we see is discouraging. Here's a quick scorecard on popular supplements as of 2007.

Antioxidants

Vitamins E, A, C and beta-carotene were favorite supplements during the 1980s and early 1990s when laboratory, animal, and observational studies suggested they could protect against coronary artery disease. But in careful studies since then, they have not shown any benefit. In fact, vitamin E may boost the risk of respiratory infections; even moderate doses of vitamin A can increase the risk of fractures; and beta-carotene increases the risk of lung cancer in male smokers. Antioxidants are no longer recommended.

Calcium

All the vitamin D in the world won't protect your bones unless you get enough calcium. Ideally, calcium should come from your diet. Most of us, however, don't eat enough dairy products and other calcium-rich foods. The Recommended Daily Allowance (RDA) for calcium is 1,000 mg for people under age 50 and 1,200 mg for people age 50 and older. If your diet falls short, supplements make sense. Calcium carbonate and calcium citrate are the best forms of calcium to take because they're absorbed the best. Men should limit themselves to the RDA since some evidence suggests very high levels may increase the risk of prostate cancer.

Chromium

Although this mineral is heavily promoted for weight loss, it won't help you shed pounds. Chromium may help boost HDL ("good") cholesterol levels, but the evidence is mixed and preliminary. It's not recommended for routine use.

Fiber

Most people think fiber supplements are just for treating constipation. But a high fiber intake has many potential health benefits, ranging from heart disease and obesity to hernias and varicose veins. The Institute of Medicine recommends 38 grams of fiber a day for men younger than age 50 and 30 grams a day for older men. Whole grains, fruits, vegetables, nuts, and seeds are the best sources of fiber, but many people need fiber supplements to meet these goals.

Fish Oil

For years, doctors have known that eating fish protects people from heart disease and stroke. A major European randomized clinical trial showed that fish oil supplements work, too. As a result of this research, the American Heart Association now recommends 1,000 mg of fish oil a day for people with coronary artery disease. People with major cardiac risk factors such as high blood pressure, abnormal cholesterol levels, and diabetes can also benefit from taking fish oil supplements. People who eat fish regularly may not benefit from extra fish oil. If you decide to take fish oil, don't choose fish liver oil, which has too much vitamin A.

Folic Acid

Although this B vitamin is clearly important for women who are pregnant or planning to become pregnant, supplements have not lived up to the hope that they might reduce the risk of heart disease, stroke, and memory loss. A good diet can provide what you need, and a suitable multivitamin offers insurance.

Glucosamine

It may reduce the pain of arthritis for some people, but it’s certainly not an "arthritis cure." With or without chondroitin sulfate, glucosamine may be worth a try for some patients with arthritis pain.

Iron

Iron supplementation is not recommended for healthy men.

Multivitamins

There is no clear evidence that a daily multivitamin is beneficial. But most provide 400 IU of vitamin D along with B vitamins, which may provide a bit of nutritional insurance. Don't waste your money on "high-potency" or "all natural" multivitamins. While some experts recommend multivitamins that provide extra amounts of certain vitamins, exceeding the RDA for vitamin A can do more harm than good.

Niacin

In very high doses, niacin improves cholesterol levels, but it can also have major side effects. Even though niacin is available over-the-counter, it's best to use it under a doctor's supervision.

Selenium

A randomized clinical trial found that 200 micrograms a day appears to reduce a man's risk of prostate cancer. It's a reasonable supplement for men to take, but more research is needed to confirm the prostate-cancer link.

St. Johns Wort

This herb may improve symptoms of mild to moderate depression, but it's not a substitute for the medical treatment of severe depression.

Vitamin D

Vitamin D is produced the old-fashioned way, when our skin is exposed to adequate sunshine. But many Americans have become deficient in "the sunshine vitamin" because our workplace has shifted from the farm to the office and, we use sunscreens to reduce the risk of skin cancer and wrinkles. Older adults, patients with chronic illnesses, and people of color are at particular risk because they get less ultraviolet energy from sunlight.

Vitamin D helps our bodies absorb calcium from the intestines. That's why it's so important for healthy bones. There's also preliminary evidence that good levels of vitamin D may help reduce the risk of prostate cancer and other cancers as well as some neuromuscular problems that can cause falls.

Current guidelines call for 200 IU (international units) a day if you're under age 50, 400 IU a day from ages 51 to 70, and 600 IU a day for people over age 70. But many experts recommend 800 IU (or even 1000 IU) a day. Daily doses up to 2,000 IU are considered safe, but more can be toxic.

It's very hard to get the vitamin D you need from your diet. Oily fish and fortified dairy products are the only good food sources. So vitamin D supplements make good sense.

Save Your Money on These

I don't recommend the following supplements because they have failed careful clinical trials or the evidence behind them is inconclusive:

·       Zinc for preventing colds or shortening cold symptoms

·       Echinacea for treating respiratory infections

·       Saw palmetto for an enlarged prostate gland or prostate cancer

·       Ginseng for reducing fatigue and improving concentration

·       Ginkgo for improving mental alertness and memory

·       Yohimbine for erectile dysfunction

·       DHEA for anti-aging, memory loss, sexual potency, bone density and obesity

It's easy to see why supplements are so appealing. But good health doesn't come in a bottle. A few simple supplements may help men stay healthy, but they should never be misused a substitutes for a good diet, regular exercise, and good medical care.

 

Harvey B. Simon, M.D. is an Associate Professor of Medicine at Harvard Medical School and a member of the Health Sciences Technology Faculty at Massachusetts Institute of Technology. He is the founding editor of the Harvard Men's Health Watch newsletter and author of six consumer health books, including The Harvard Medical School Guide to Men's Health (Simon and Schuster, 2002) and The No Sweat Exercise Plan, Lose Weight, Get Healthy and Live Longer (McGraw-Hill, 2006). Dr. Simon practices at the Massachusetts General Hospital; he received the London Prize for Excellence in Teaching from Harvard and MIT.

 

FYI  http://chronicfatigue.about.com/b/a/256060.htm?nl=1

World’s First Fibromyalgia Tissue Bank

For the first time, scientists are going to begin collecting brain and spinal cord tissues from fibromyalgia patients for research that will hopefully give them new insights into the cause of FM and new avenues of effective treatments.

The National Institute of Health (NIH) awarded a $1.4 million grant to Dr. Dianne Lorton, head of the Sun Health Research Institute’s Robert J. Hoover Center for Arthritis Research, to establish this first ever fibromyalgia tissue bank. In addition to the NIH grant, a $100,000 grant from the American Fibromyalgia Syndrome Association and another pilot project grant from the NIH is making this project possible.

The research will initially focus on glial cells (activated brain and spinal cord cells) to determine whether they are involved in long-term pain conditions. This in turn will allow for the development of new drugs to control chronic-pain responses.

The Sun Health Research Institute in Sun City, near Phoenix, Arizona is now enrolling donors. Although tissue donation does not occur until the donor’s death, donors will be asked to visit the institute annually for an FM assessment and to complete a pain-assessment questionnaire. Those who are enrolled as donors are also entitled to priority placement on a list of candidates for participation in future clinical trials of new pain drugs. For more information about becoming a tissue donor, call 623-875-6528.

Friday March 9, 2007

 

Next Meeting

The next meeting is scheduled for Sunday April 15th at Pascack Valley Hospital from 2-4 PM.  We are in the process of confirming a program for that day.  It may be a presentation of sleep and fibromyalgia.  It is not yet confirmed.  There will also be time for open questions and sharing.

 

This newsletter is intended for CFS patients in the area of this support group.  The purpose is to share information and support.  If you have questions about meetings please contact: Pat LaRosa at pat@larosas.net, Nancy Visocki at ngv.njcfsa@verizon.net, Judy Machacek at judymachek@msn.com or Frank Kawa at 201-768-4111