UPCOMING MEETINGS

***PLEASE NOTE ***NEW TIME AND LARGER MEETING ROOMS ***

 DAYTIME GROUP

Jamestown United Methodist Church Jamestown UMC

Trinity Group First Thursday of month at 1:00 pm, Trinity Methodist Church, Trinity

Rockingham County Group Third Thursday of month at 7:00 pm, Morehead Hospital, Eden

Burlington Group First Monday of month, Faith UMC: Myra Jackson (336) 229-7818

Lexington Group Contact Person: Donna Hall, RN (336) 224-0156

MAIN MEETING DIRECTIONS ... Moses Cone's Adult Health Education Center (AHEC) is located at the hospital. Turn off Wendover Ave. in Greensboro onto Church St., then left onto Northwood, then right at the next light, and the Parking Deck will be on the right. The AHEC entrance is located beside the parking deck at the top of the circular drive.

Because both CFS, FMS, MCS, GWS, Porphyria and Post-Polio Syndrome have overlapping symptoms, Brainstorms addresses them all at times as of concern to each of us.

A CHAT ROOM founded by committee member, Mary Pretlow, is located at http://ncchem.com/safe-arbor. Focus: support the Christian community in prayer for CFS/FMS/MCS sufferers and related issues, but open to all.

Our Support Group is also on the Web, courtesy of Earle Phillips at the NC Chemical Sensitivity Website ( http://ncchem.com); committee member, Christine Hagar's CFS/FMS/MCS WEBSITE address may be found at  http://members.xoom.com/PlopFizz

DON'T MISS IT!!!

Upcoming October Guest Speaker will answer your questions about social security disability issues. Charlotte attorney, Maggie DeVries will be speaking to our group from 7:30-9:00 pm on cutting edge issues regarding disability. Come with your questions! Please note our new meeting time. This allows us access to Moses Cone's larger meeting rooms, as well as more accurately reflecting times we usually begin and end our meetings! Come and bring a friend who needs to know about FMS/CFS/MCS.

SPOTLIGHT ON OUR VOLUNTEERS

Mary is a former executive secretary for the president of Burlington Industries, home missionary of the Southern Baptist Church, Counselling Department secretary of international television work, and at almost 74 years young (10/19/25) is still doing part-time secretarial work for several churches as well as data entry for our bi-monthly newsletter. All of this she has done while suffering from chronic pyelonephritis. Her love is for people, and her ministry is to help those who are suffering. Her daughter has CFIDS.

THE PHILOSOPHER'S CORNER

Melinda Vadas, PhD

WORTH READING

List of Manufacturers of Safer* Cleaning Products available in "Safe Shopper's Bible," by Epstein and Steinman (Epstein is professor of public health at University of Illinois, Chicago)

MAKING OUR CASE  - FROM THE EDITOR

This patient activist, when questioned about what is wrong with her, will explain, "myalgic encepalopathy." It seems to give health care professionals a better handle on where the problem most probably originates - the physical (not emotional) brain, according to Dr. Jay Goldstein. It also garners the "respect" if you want to call it such, that sufferers with this disabling illness are entitled to from the general public and health care professionals. You notice I said respect, not the self-wallowing of pity. That is pitifully all most patients are concerned about in the absence of a cure. Surely we can grant them this one SMALL request. If the ME abbreviation subjecting us to further ridicule is the concern, then simply change or dispose of the abbreviation. Arthritis doesn't have one, nor does cancer, nor lupus. The MS folks could have worried about their abbreviation implying a "female disease," ie. Ms. but they didn't let that stop them from putting patient legitimacy first. Let's not put roadblocks up on the one thing we CAN change about this illness ... the name.

WHAT OTHERS HAVE TO SAY ...

"In an insane world, a sane man is crazy." On April 15, 1989, at the first National public meeting about ME/CFS after the unfortunate 1988 Case Definition published in the Annals of Internal Medicine, I said, "If you do nothing else today, change the ------- name of this disease. It demeans the people who suffer so badly, it sheds no light on a cause or treatment, it does not differentiate this condition from any other chronic condition, and makes no mention of the tremendous pain, and the completely disabling neurological symptoms that we all experience." The patients in the audience erupted in applause, and many of the Doctors looked mystified. The Doctors thought, "What is the big deal? It is just a name." Big mistake! Nine long years, and countless painful deaths later, a name change finally has been put on the table. And because you could not agree on a new moniker, you tabled it. This is very counterproductive. It is way past the time for a change. As the NIKE ad says, "Just Do It!"

The German philosopher, Arthur Schopenhauer, once stated, "All truth goes through three steps:

• First, it is ridiculed.
• Second, it is violently opposed.
• Third, it is accepted as self-evident.

In Hilary Johnson's landmark epic, Osler's Web, after more than 500 interviews with Doctors, researchers, and patients, she eloquently states the obvious: this is an organic brain disease! It affects multiple organ systems. It is as Secretary of Veterans Affairs Jesse Brown says, "As serious as a shotgun blast to the chest or head. It is that serious." We believe that the time for just talk is over. The time for action must now begin. In closing, we say, "Listen to the patients." They will show you the way... Anyone who is waiting for one etiologic agent to cause all this misery just proves they do not fully grasp the nature of this beast. This is a very complex illness involving multiple systems of the body. "Different insult, same result." There are many possible triggers. This illness is not rare, but quite common and getting more so. The longer we wait, the worse the damage will be. With high-tech tools and old fashioned hard work, we can become the first generation in History to begin to unravel this mystery. But we must work together: The Military, Doctors, Researchers, government officials, patients and those who care for us. In reality, we have no other choice. - Tom Hennessy

Why are a wise man and a wise guy opposites?

Harvard's Health Letter, 12/98, explores Faith and Healing: Making a Place for Spirituality. They discuss the "medicine man," the century-old links between religion and medicine, noting that many of the first hospitals were opened by monks. They trace the "advancements" which caused the current often-adversarial role between the two. They see this division lessening due to the disillusionment of many Americans with the limitations of high-tech, impersonal care, and the turn towards holistic medicine. Other statistics share include survey of family physicians revealed that at least 75% of them felt a persons's faith, and others' prayers could be of help in the physical healing process. Also highlighted was a Duke University study finding an association between increased immune function and regular worship attendance. Specifically, there was a decrease of high blood levels of Interleukin-6 (high levels associated with some autoimmune disorders) An interesting article worth checking into at your local college library.

"Bernie the Attorney", our national CFIDS favorite lawyer! suggests in the National CFIDS Foundation "FORUM" that we check on credit cards, student and installment loans, mortgages and life insurance premiums, etc. for provisions to excuse payments for as long as the borrower or policy owner is totally disabled. He suggests possibly checking to see if you are entitled to future waiver of payments for length of your disability. Thanks, Bernie! Check out his regular column in the quarterly issue of the FORUM. The yearly subscription of $25 is a small donation to make to receive this quality source of CFIDS info. (www.cfidsfoundation.org)

EXCERPTS from "CFIDS/FMS in Men," courtesy of the CSN Support Network (1-800-443-CFIDS)

"You might not be as powerless as you feel or fear. You might not have any power over your own physical abilities now, or even how others perceive you, but you always have the power and control over how you view yourself."

NEW STUDY

Professor Bill Karper of UNCG is looking for subjects for a new Exercise/Study Program with FMS/CFS patients. For more info, call 336-334-3035.

READY JUST IN CASE

Conservative General Preparedness (for any hurricane, storm emergency/disaster) and also for any potential Y2K side-effects. (2-4 week supply) (Also check with Red Cross for their booklet "Disaster Preparedness for People with Disabilities.")

1. 1 gallon of pure water per person per day.

2. Canned meats, vegs, fruits. Cereal grains such as oatmeal, rice, four and pasta.

3. Since winter, change of warm clothes per day per person, and change of footwear and one sleeping bag per person.

4. First aid kit with one month supply of medications (per Red Cross.)

5. Emergency tools inc. battery powered radio/TV, flashlight and plenty of extra batteries.

6. Extra set of car keys, credit card, cash, eyeglasses.

7. Sanitation supplies (toilet paper, papers towels, garbage bags, feminine hygiene supplies.)

8. Hard copy of medical records, banking records, etc.

9. Check w/manufacturer re: readiness of your electronic items.

10. Keep auto gas tank above half full.

11. Alternative cooking device (ie. charcoal grill outdoors w/plenty of matches, etc. or camping stove, sterno)

12. Check smoke alarm batteries ahead of time.

- - - Excerpts of information courtesy of CSN (cfids-support-net@onelist.com)

USA Today, 7/14/99

Internet Changes Medicine: Net Empowering Patients

Includes Guide to Medicine Online, Patients Helping Patients, How Doctors are Using the Net. Stating "millions scour the Web to find medical information," Dr. Mitchell Morris of Univ. of Texas Anderson Cancer Center says the internet will irrevocably affect how doctors and their patients interact. "A network of support: patients find emotional, practical advice and each other." There are some good computer specials locally at Circuit City, Best Buy, etc. for around $500 for complete name brand computer and 3 years of internet service. Hooray! Get online guys, we CFS/FMS/MCS'ers are a good part of the "millions" scouring the web, and WE ARE helping each other.

** In April, researchers in Switzerland announced that much of the rain falling on Europe contains such high levels of pesticides that rainwater would be illegal if it were supplied as drinking water.[1] Rain over Europe is laced with atrazine, alochlor and other common agricultural poisons sprayed onto crops. The European Union has set a drinking water standard of 100 nanograms per liter for any individual pesticide. Stephan Muller at the Swiss federal Institute for Environmental Science and Technology in Dubendorf reported finding one sample of rain containing 4000 nanograms per liter of 2,4-dinitrophenol, a common pesticide (not to be confused with the weed killer 2,4-D). Muller had previously studied samples of rain from 41 storms over Europe and found Atrazine at levels exceeding 100 nanograms per liter in 9 of them. A 1999 study of rainfall in Greece found one or more pesticides in 90% of 205 samples taken. Atrazine was measurable in 30% of the 205 samples.[2] Atrazine is a weed killer used on 96% of the U.S. corn crop each year. Introduced in 1958, some 68 to 73 million pounds were used in the U.S. in 1995, making it the best-selling pesticide in the nation. Atrazine interferes with the hormone systems of mammals. In female rats, it causes tumors of the mammary glands, uterus,and ovaries. Two studies have suggested that it causes ovarian cancer in humans. EPA [U.S. Environmental Protection Agency] categorizes it as a "possible human carcinogen." Atrazine is found in much of the drinking water in the midwestern U.S., and it is measurable in corn, milk, beef and other foods. (See REHW#553.)

** Last March, well-known Swedish scientists Lennart Hardell and Mikael Eriksson published a case-control study (404 cases and 741 controls) showing once again that non-Hodgkin's lymphoma (NHL) is linked to pesticide exposures. Hardell and Eriksson published their first study linking phenoxy herbicides to non-Hodgkin's lymphoma (NHL) in 1981.[3] Non-Hodgkin's lymphoma (NHL) is a group of cancers that arise in the white blood cells. NHL is increasing rapidly in the U.S. and elsewhere in the industrialized world. Between 1973 and 1991, the incidence of non-Hodgkin's lymphoma increased at the rate of 3.3% per year in the U.S., making it the third fastest-growing cancer (after prostate cancer, growing at 3.9% per year, and melanoma of the skin, also growing at 3.9% per year).[4] In Sweden, the incidence of NHL has increased at the rate of 3.6% per year in men and 2.9% per year in women since 1958. In recent years, AIDS patients have contributed to the increase in NHL, but a steady rise in the incidence of this disease was apparent long before the AIDS epidemic. Together the known "risk factors" for NHL --including immune-suppressing drugs, rare immune-system diseases, and AIDS, explain only a small proportion of NHL cases. One of the herbicides linked to NHL by the most recent Hardell study is glyphosate, sold by Monsanto under the trade name Roundup. A previous study of human subjects in 1998 had implicated Roundup in hairy cell leukemia (cancer of the blood-forming organs), a rare kind of NHL.[5] Several animal studies have shown that Roundup can cause gene mutations and chromosomal aberrations.[3] The use of Roundup is expected to increase substantially in the next few years because several of Monsanto's genetically engineered crops (such as potatoes and corn) are "Roundup Ready" which means they have been specifically designed to withstand a thorough dousing by Roundup. The goal is to create crops that are not affected by Roundup so that unusually large quantities of Roundup can be applied to eradicate weeds without harming the crop. Roundup is Monsanto's most profitable product. (See REHW #637, #638, #639.)

** Last month, researchers in the U.S. and Canada announced that they had measured pesticides in the amniotic fluid of 30% of a sample of 9 pregnant women in Los Angeles, California.[4] A baby growing in the womb floats in amniotic fluid for 9 months before birth. The particular pesticide found in amniotic fluid -- p,p'-DDE --is a breakdown byproduct of DDT and is known to interfere with male sexual development by de-activating the male sex hormone, testosterone. Until now, pesticides had not been measured in amniotic fluid. The unpublished study of pesticides in amniotic fluid was reported at the 81st annual meeting of the Endocrine Society in San Diego, California, in June.[6] The researchers released a statement in San Diego saying, "The concentrations of p,p'-DDE found (range of 0.01 to 0.63 nanograms per milliliter [parts per billion]) are sufficient to cause concern, since the levels measured are in the same range as some steroids [hormones] which occur naturally in the fetus at the same time of development." The statement also said, "Of the various health problems associated with these chemicals, developmental abnormalities of the male reproductive tract, suppression of immune function, development of the brain and neurobehavioral problems in children are of major concern because they are potentially avoidable and irreversible." One of the authors of the study, Siu Chan of the University of Calgary in Canada, told NEW SCIENTIST magazine that researchers cannot be sure that DDE would have any affect on babies exposed continuously in the womb.[7] But Chan pointed out that alligators were harmed by exposure to a similar chemical in Florida after a chemical spill. "In males, the penis was much smaller than normal," Chan said. (See REHW #372.) Several studies of laboratory animals have confirmed that DDE can interfere with normal sexual development of males and can cause enlarged prostate glands.[8,9]

In sum, many of us are being exposed -- without our informed consent -- to industrial poisons starting in the womb, then in our food and water more or less continuously throughout childhood and into adulthood. Wildlife are being continuously exposed as well. Many of these substances interfere with mental and sexual development and can cause learning disorders and violent behavior. (See REHW #529, #551, and #648.) Science has no way of assessing what effects combinations of these poisons will have. Yet risk assessors working for the poisoners, and their apologists in government, make a good living manipulating mathematical models to "prove" that all of this is acceptably safe. They are the conductors keeping the trains running on time to Auschwitz, just doing their jobs. But of course the owners of the trains are the industrial poisoners and the political representatives they own. It boils down to this: we must get private money out of our elections so that we can choose political representatives who are not in the pockets of the poisoners. Until that happens, the poisoning will continue.