CFS/FMS News November \December 2004
of South West Florida WWW.CFS-FMS-FL.ORG
Meeting Third Saturday of the month, 10:30AM to Noon at the Cape Coral Hospital,
November 20 – Round table discussion lead by a licensed counselor
December 18- Round table discussion lead by a licensed counselor
Handouts on Chronic Fatigue and Fibromyalgia are available at every meeting. A therapist leads round table discussion. Information and support is shared by all. Perfume and scent free due to sensitivities. Programs announced as available.
Newsletters are published every other month.
If you received this newsletter in the mail it means we do not have your e-mail address.
Visit our very own web site at www.CFS-FMS-FL.org
Roxann Barber
4114 S.E. 18th Ave, Unit A
Cape Coral, Florida 33904
It is not the number of breaths you take that make a life,
It is the moments that take your breath away.
From the Editor
HELP! I need help processing the newsletter. No one has come forward to take it over, I could use help with the mailing if someone can do at least that. It is getting to be too much for me with my job, a house to remodel and the extra part time jobs I am picking up. I, like you, cannot do it all. Please give me a call if you can help out.
Love and hope for all, Roxy Barber
239/541-3429
Simple Practices Can Ward Off Flu
From: ImmuneSupport.com
http://www.immunesupport.com/library/bulletinarticle.cfm?ID=6078
Most of us won't be getting a flu shot this year, but there are ways to avoid getting sick.
First, doctors recommend using alcohol-based hand sanitizers. Experts say 80 percent of germs are spread by the hands, and just a dime-sized amount of the sanitizers has been proven to kill the most common ones. Keep a bottle of sanitizer handy in your briefcase or desk drawer, and use it at least twice a day.
Next, experts say, pop some vitamin E. A study by Tufts University researchers showed a 20 percent decrease in upper-respiratory infections like the flu in the elderly who used 200 mg of vitamin E each day
Next on the experts' list is to wipe down shared surfaces like
computers and phones.
Despite some debate over the effectiveness of disinfectant wipes in attacking viruses, experts agree that the wipes will kill at least some of germs that can make you sick -- especially in the workplace.
And finally, experts say, do at least some holiday shopping online. While you may have to go to the mall to visit Santa or see items firsthand, avoiding big crowds is key to stopping the spread of the flu, which is highly contagious.
"You might consider wearing a mask, limiting the amount of time that you spend milling about, get your business done and then go home," said Dr. Stephen Zinner, of Mount Auburn Hospital, in Cambridge, Mass.
Conquering Chronic Fatigue: Taking Back Your Life
From: CFIDS Associaiton
http://www.cfids.org/cfidslink/november-spotlight.asp
In 2001, after months of being treated for flu-like symptoms that wouldn’t go away and then being told her illness was “all in her head,” Shannon Flammer was diagnosed with CFIDS and a candida infection. Unprepared to let the diagnosis rob her of her life, Flammer set out on a spiritual and emotional road to self-discovery and wellness.
“I worked hard to find out why I had become so ill,” Flammer says. “Along the way, I found that I was highly sensitive and allergic to most foods and environmental substances—and allergies play a far bigger role in this illness than most people are aware.”
Flammer held out little hope that doctors who had been unable to accurately diagnose her condition would now find a way to help her through this devastating illness, so she turned to alternative health care. She began by undergoing a seven-step process that included immediately changing her diet, taking vitamin and herbal supplements and detoxifying her body, home and car. She also became immersed in learning about her condition through research and application.
In order to share with other PWCs the results of her care and findings, Flammer has written a book, Conquering Chronic Fatigue: Taking Back Your Life, extensively explaining her alternative health care treatment plan. Flammer’s book, which is available only on the Internet, has charts, bullet points, “to do” lists and allergy-conscious recipes designed to help PWCs through the discomfort of the illness.
“After reviewing the books and materials available about these two illnesses, I became passionate about writing a book about the techniques that helped me,” says Flammer. “I wrote this book from the perspective of what I wanted from the day I found out I had these illnesses. All I wanted was a simple and easy-to-read plan.”
Kelly Kruzick, a PWC from Santa Monica, California , has tried every idea in Flammer’s book, which she says comes from the right perspective and offers many good ideas for managing the symptoms of CFIDS.
“I read many of the books out there about CFIDS, but they left me with a negative reaction because they were so strict and overwhelming that I couldn’t do anything,” said Kruzick. “ Shannon ’s book is empowering and her guidance works. It is written simply and succinctly, and it tells you what to do and what to eat and encourages spiritual healing as well.”
“I was scared and alone in this illness,” says Flammer. “As I learned more about CFIDS and alternative treatments, I became committed to sharing my experience with other PWCs. The book and Healing Days are my way of giving back.”
For more information about Flammer and her book, visit www.healchronicfatigue.com.
Living with CFIDS: Personal Stories
Many CFIDSLink readers have been sharing their own stories of how CFIDS impacts their lives. Spouses, friends and children of PWCs (people with CFIDS) are taking the time to write us and tell us about their journey, their joys and sorrows, the changes in their lives. In this month's column, we are publishing Robert Joe Stout's account of how he and his wife face the challenges of living with CFIDS, which his wife calls a "very unsexy disease." Visit http://www.cfids.org/cfidslink/stout.asp to read this life-affirming memoir from the self-described "house-husband sort of journalist," and please consider sending us your own story. Send your personal stories to Marcia Harmon at stories@cfids.org.
Shop at IGive.com and Help the NFA!
The National Fibromyalgia Association is now an eligible recipient for donations at IGive.com! Shop at over four-hundred stores online at IGive and 4.8% of your purchases go to the National Fibromyalgia Association.
Findings Show Cost Savings, Health Benefits for Five Selected Dietary Supplements
From: NFA’s FM Online Newsletter, Vol. 4, No.10, October 11, 2004, and Dietary Supplement Information Bureau http://www.supplementinfo.org/
Washington, DC – September 22, 2004 – The study, commissioned by the Dietary Supplement Education Alliance and conducted by The Lewin Group, included a systematic literature review of the most rigorous scientific research available.
Calcium: The estimate of the five-year (2005-2009) net savings in hospital, nursing facility, and physician expenditures resulting from a reduction in the occurrence of hip fractures among those over age 65, through daily intake of 1200 mg of calcium with vitamin D is $13.9 billion. Approximately 734,000 hip fractures could be avoided over the five year period.
Folic Acid: If just 10.5 million women of childbearing age began taking 400 mcg of folic acid daily, approximately 600 fewer babies would be born with neural tube defects per year, saving as much as $321,853,000 as a result. Taking into account the very low cost of the supplement, $1.3 billion in lifetime medical costs could potentially be saved over the next five years.
Omega-3 Fatty Acids: Recent studies have shown that omega-3 fatty acids can have beneficial effects on cardiovascular disease (CVD), and Lewin’s review found consistent evidence that omega-3 fatty acids help reduce deaths from CVD. The research literature contains many promising studies concerning the health benefits of omega-3 fatty acids for a wide number of chronic conditions (e.g., depression, renal disease, rheumatoid arthritis and asthma). Additional research is warranted to verify these preliminary suggestions.
Glucosamine: Glucosamine has been shown to have anti-inflammatory effects and is believed to repair and maintain cartilage. Recently the use of complementary and alternative therapies in the treatment of osteoarthritis has become more widespread, and particular interest has focused on glucosamine.
Saw Palmetto: Preliminary findings on the effectiveness of saw palmetto for alleviating the symptoms of benign prostatic hyperplasia (BPH) indicate that use of the herb yields slight to moderate improvement in symptoms for men with this chronic urinary syndrome.
"As our country faces an ever-growing crisis in health care, it is important to recognize the role that dietary supplements can play in reducing our burden of disease and the costs to manage it,” "The findings provide evidence to support both the cost savings and quality-of-life benefits of these particular supplements.”
FDA Issues New Warnings for Remicade, Drug for Rheumatoid Arthritis, Crohn's Disease Linked to Blood and Nervous System Disorders
From: http://my.webmd.com/content/article/93/102217.htm?printing=true
SOURCES: FDA. Centocor Inc.
Aug. 25, 2004 -- The FDA is warning doctors that people using the drug Remicade may face an increased risk of potentially fatal blood or nervous system disorders,including some fatal cases, in people taking the drug.
Some Remicade users suffered from a loss of infection-fighting white blood cells, oxygen-carrying red blood cells, and blood-clotting platelets that left them vulnerable to infection or abnormal bleeding, and some of them died. Centocor says, however, that the association between taking the drug and these disorders remains unclear.
The company also warned of rare cases of central nervous system disorders, such as inflammation of the blood vessels, that have been reported in Remicade users.
In response, Centocor and the FDA have revised the warnings and adverse reactions sections of the labeling for Remicade to include information on these possible risks.
http://www.fda.gov/cder/drug/infopage/vioxx/default.htm.
The Food and Drug Administration (FDA) today acknowledged the voluntary withdrawal from the market of Vioxx (chemical name rofecoxib), a non-steroidal anti-inflammatory drug (NSAID) manufactured by Merck & Co. FDA today also issued a Public Health Advisory to inform patients of this action and to advise them to consult with a physician about alternative medications.
Merck is withdrawing Vioxx from the market after the data safety monitoring board overseeing a long-term study of the drug recommended that the study be halted because of an increased risk of serious cardiovascular events, including heart attacks and strokesAlthough the risk that an individual patient would have a heart attack or stroke related to Vioxx is very small, the study that was halted suggests that, overall, patients taking the drug chronically face twice the risk of a heart attack compared to patients receiving a placebo."
All of the NSAID drugs have risks when taken chronically, especially of gastrointestinal bleeding, but also liver and kidney toxicity. They should only be used continuously under the supervision of a physician."
FDA Adds Warning to Serzone, Risk of Liver Failure, Suicidal Thoughts May Increase
From: FDA. WebMD Medical News: "FDA Issues Warnings on Antidepressants."
© 2004 WebMD Inc. All rights reserved. http://my.webmd.com/content/article/89/100236.htm
June 23, 2004 -- The FDA issued a warning today for the antidepressant Serzone, saying that those who take the drug are at increased risk of liver failure. Serzone carries a unique risk of liver failure that is not seen with the other antidepressants
In March, the FDA issued a warning about the possibility of worsening depression or suicidal thoughts in people, particularly children, who take any of 10 popular antidepressants, especially at the beginning of treatment or when the doses are increased or decreased.
Earlier this week, the FDA and GlaxoSmithKline sent a notice to doctors and patients regarding the antidepressants Paxil and Wellbutrin and their potential for worsening depression. Other similar warnings regarding the other antidepressants are likely to follow in coming days.
The 10 antidepressants are: Prozac (also sold generically as fluoxetine). Zoloft, Paxil, Luvox, Celexa, Lexapro, Wellbutrin, Effexor, Serzone, Remeron
Ampligen Data Presented at the 7th International Conference for Chronic Fatigue Syndrome
From: ImmuneSupport.com10-13-2004
http://www.immunesupport.com/library/bulletinarticle.cfm?ID=6019
Patients Receiving Ampligen Perform at Twice the Level Historically
Considered Medically Significant In Chronic Diseases
The difference in improvement in exercise treadmill duration in the Ampligen cohort compared to placebo was 15.2% and over twice the minimum considered medically significant (6.5%). Moreover, there was no significant difference in the number of serious adverse events, missed dosages or dropouts (i.e., leaving the study prematurely) among patients receiving Ampligen versus those receiving placebo, suggesting that the experimental drug was generally well tolerated.
After additional analysis of the treadmill data over the course of the last few months, the treadmill improvement data actually further increased over what we previously thought. This study is particularly important because CFS is currently only managed symptomatically as there is as yet no recognized approved therapy for this major disease category," said Dr. William A. Carter, Chief Executive Officer of Hemispherx CFS is a worldwide disease estimated to affect over 500,000 people in the U.S., and a similar number in Europe.
Disclaimer
The Chronic Fatigue and Fibromyalgia Syndromes Support Group is a self-help program to present ideas and exchanges with the members. None are to be construed as medical advice. This newsletter does not dispense medical advise not is any endorsement intended. No responsibility will be assumed for any specific medical hypothesis or product, and will assume no responsibility for any treatment or activity undertaken by readers.
Contact
Bonnie Dewar 239/543-2812
Terry Connor 239/945-1247
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