Vol. IV, Issue #38
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
In The News
http://www.intelihealth.com/IH/ihtIH/EMIHC277/8513/31412/311996.html?d=dmtContent
Are You Considering Using
Complementary and Alternative Medicine?
Decisions
about your health care are important — including decisions about
whether to use complementary and alternative medicine (
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
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
If you use
any
If you use
a
|
1. What is complementary
and alternative medicine?
Complementary
and alternative medicine (
2. How can I get reliable
information about a
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
- Talk to
your health care practitioner(s). Tell them about the therapy you are
considering and ask any questions you may have about safety,
effectiveness, or interactions with medications (prescription or
non-prescription). They may know about the therapy and be able to
advise you on its safety and use. If your practitioner cannot answer
your questions, he may be able to refer you to someone who can. Your
practitioner may also be able to help you interpret the results of
scientific articles you have found.
- Use the
Internet to search medical libraries and databases for information. One
database called CAM on PubMed (see "For More
Information"), developed by NCCAM and
the National Library of Medicine (NLM), gives citations or abstracts
(brief summaries) of the results of scientific studies on CAM. In some
cases, it provides links to publishers' Web sites where you may be able
to view or obtain the full articles. The articles cited in
- If you do
not have access to the Internet, contact the NCCAM Clearinghouse (see "For More
Information"). The staff is available
to discuss your needs with you and assist you in searching the
peer-reviewed medical and scientific literature.
- Visit your
local library or a medical library to see if there are books or
publications that contain scientific articles discussing
3. Are
Each
treatment needs to be considered on its own. However, here are some
issues to think about when considering a
- Many
consumers believe that "natural" means the same thing as "safe." This
is not necessarily true. For example, think of mushrooms that grow in
the wild: some are safe to eat, while others are poisonous.
- Individuals
respond differently to treatments. How a person might respond to a
- For a
- The
components or ingredients that make up the product
- Where the
components or ingredients come from
- The
quality of the manufacturing process (for example, how well the
manufacturer is able to avoid contamination).
- The
components or ingredients that make up the product
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.
- For
4. How can I determine
whether statements made about the effectiveness of a
Statements
that manufacturers and providers of
- Is there
scientific evidence (not just personal stories) to back up the
statements? Ask the manufacturer or the practitioner for scientific
articles or the results of studies. They should be willing to share
this information, if it exists.
- Does the
Federal Government have anything to report about the therapy?
- Visit the
FDA online at www.fda.gov to see if there is any information available
about the product or practice. Information specifically about dietary
supplements can be found on FDA's Center for Food Safety and Applied
Nutrition Web site at www.cfsan.fda.gov. Or visit the FDA's Web page on
recalls and safety alerts at www.fda.gov/opacom/7alerts.html.
- Check with
the Federal Trade Commission (FTC) at www.ftc.gov to see if there are any
fraudulent claims or consumer alerts regarding the therapy. Visit the
Diet, Health, and Fitness Consumer Information Web site at www.ftc.gov/bcp/menu-health.htm.
- Visit the
NCCAM Web site, nccam.nih.gov, or call the NCCAM
Clearinghouse to see if NCCAM has any information or scientific
findings to report about the therapy.
- Visit the
FDA online at www.fda.gov to see if there is any information available
about the product or practice. Information specifically about dietary
supplements can be found on FDA's Center for Food Safety and Applied
Nutrition Web site at www.cfsan.fda.gov. Or visit the FDA's Web page on
recalls and safety alerts at www.fda.gov/opacom/7alerts.html.
- How does
the provider or manufacturer describe the treatment? The FDA advises
that certain types of language may sound impressive but actually
disguise a lack of science. Be wary of terminology such as
"innovation," "quick cure," "miracle cure," "exclusive product," "new
discovery," or "magical discovery." Watch out for claims of a "secret
formula." If a therapy were a cure for a disease, it would be widely
reported and prescribed or recommended. Legitimate scientists want to
share their knowledge so that their peers can review their data. Be
suspicious of phrases like "suppressed by government" or claims that
the medical profession or research scientists have conspired to prevent
a therapy from reaching the public. Finally, be wary of claims that
something cures a wide range of unrelated diseases (for example,
cancer, diabetes, and AIDS). No product can treat every disease and
condition.
5. Are there any risks to
using
Yes, there
can be risks, as with any medical therapy. These risks depend upon the
specific
- Discuss
with your health care practitioner any
- If you
have more than one health care provider, let all of them know about
- Take
charge of your health by being an informed consumer. Find out what the
scientific evidence is about any treatment's safety and whether it
works.
- If you
decide to use a
6. Are
While some
scientific evidence exists regarding the effectiveness of some
NCCAM is
the Federal Government's lead agency on scientific research of
7. I am interested in a
Here are a
few things to consider when selecting a practitioner.
- Ask your
physician, other health professionals, or someone you believe to be
knowledgeable regarding
- Contact a
nearby hospital or a medical school and ask if they maintain a list of
area
- Contact a
professional organization for the type of practitioner you are seeking.
Often, professional organizations have standards of practice, provide
referrals to practitioners, have publications explaining the therapy
(or therapies) that their members provide, and may offer information on
the type of training needed and whether practitioners of a therapy must
be licensed or certified in your state. Professional organizations can
be located by searching the Internet or directories in libraries (ask
the librarian). One directory is the Directory of Information Resources
Online (DIRLINE) compiled by the National Library of Medicine (dirline.nlm.nih.gov). It contains locations
and descriptive information about a variety of health organizations,
including
- Many
states have regulatory agencies or licensing boards for certain types
of practitioners. They may be able to provide you with information
regarding practitioners in your area. Your state, county, or city
health department may be able to refer you to such agencies or boards.
Licensing, accreditation, and regulatory laws for
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
9. Can I participate in
NCCAM
supports clinical trials (research studies in people) of
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.
Web site: www.nlm.nih.gov/nccam/camonpubmed.html
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.
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,
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
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
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
In the News,
Part 2
A
Scorecard on Supplements
By
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.
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.
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.
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.
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.
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
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.
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.
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 supplementation is not recommended for healthy men.
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.
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.
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.
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 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.
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
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
Next
Meeting
The
next meeting is scheduled for Sunday April 15th at
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