Brainstorms

 The Newsletter of the Greensboro CFIDS/FMS Support Group

January/February 2002

* Postponed until we can find a new meeting place for 2002. Cone Hospital's Building Program has necessitated no outside group policy until building complete.


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/related issues, open to all. Our Support Group is also on the Web, courtesy of Earle Phillips at the NC Chemical Sensitivity Website http://ncchem.com , National CFIDS Foundation ( www.ncf-net.com ), CFIDS Association
of America ( www.cfids.org ) and the CDC ( www.cdc.gov  ). 
CFIDS/FMS/Environmental Illness Share, Care and Prayer, Inc. 1-972-964-8333 (Wed.8-4, Fri.8-11, 
Sat.10-11) or email eianswerline@sharecareprayer.org.

Trinity Group. . . 1st Thurs. of month at 1:00 pm, Trinity UMC, Trinity 
Burlington Group 1st Mon. of mo., Faith UMC: Myra Jackson (336) 229-7818 
Winston-Salem Group Thursday, Jan. 10, 6:30 pm (336-723-7624 for more info) 
2nd Thurs. of each month @6:30 pm ( www.cfsfms.freeservers.com  ) 
Topic: Environmental Effects on Fatigue
Speaker: Laurence S. Webster, M.D.
 www.webstermed.com  
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To subscribe to the 2002 BRAINSTORMS Newsletter, please send a check for $15 made payable to the Greensboro CFS/FMS Support Group, and mail to Treasurer, Marvina Powers, 107 Wall Ave., 
Thomasville, NC 27360. This is a year's subscription to the bimonthly newsletter. Newsletter Subscription Renewal ... Please check your address label or checkbook entry to see when your BRAINSTORMS subscription expires. If you can't remember, just give  Marvina Powers, Treasurer, a call at 336-476-8933,so your subscription continues uninterrupted.

Because CFIDS/ME (Chronic Fatigue Immune Dysfunction Syndrome or Myalgic Encephalopathy), FMS (Fibromyalgia), MCS(Multiple Chemical Sensitivities), GWI (Gulf War Illness), Porphyria and Post-Polio Syndrome (PPS) have overlapping symptoms, Brainstorms addresses them all as of concern to each of us. 


*****PLEASE NOTE **** 

Please, no perfumes, colognes, etc. at meeting, as many members are very sensitive to odors and chemicals. It worsen their symptoms. Washing clothing in perfume-free detergents is also helpful. Thank
you very much for your consideration. 

If you're having CFIDS-related neurological trouble with fluorescent lighting, try web-searching the term, "Meares-Irlen Syndrome" and "Drs. Richards and Evans", City University, Institute of Optometry, London researchers, for help with special filtered lenses, etc. Intuitive Colorimeters are used in optimetric evaluation of best color for the individual
( Ceriumgrp@aol.com  manufacturer of instrument), inventor, Professor Arnold Wilkins 

( arnold@essex.ac.uk ,).

CRUCIAL BOOKS TO READ: 
* Kaye Kilburn, M.D. "Chemical Brain Injury". Available from Amazon.com or your local regular or medical school library. This describes CFIDS/ME/MCS/FMS. * Judith Miller, William Broad, NY Times Correspondents and Science Writers, Jerome Hauer, Stephen Engelberg, NY FEMA and ER Management "Germs: Biological Weapons and America's Secret War" *IMPORTANT NOTE: These
authors were interviewed on CSPAN-2 on 11/11/01 by Robert Krulwich, ABC News Correspondent. The following describes CFIDS: In their discussion, the authors described their visit to Russian biological labs and discussions with their scientists. They stated the difference between their program of developing biochemical weapons was that we (U.S.) found antidotes for our weapons, they did not. At the time of one of the authors earlier 1988 USSR visit, they were developing a modified legionella virus which had no cure, and was not a toxin or bacteria. It was created to attack the physiology of the organism, specific organs, and manifested as a MS-type disease with low blood pressure, depression and immune dysfunction as some of the symptoms. The authors stated it would be hard to treat, and even harder to diagnose. On the MCS track, the authors stated that when the biological weapons didn't work for the terrorists who were making inquiries and experimenting, they went to chemicals. 

 

The general practitioners and US Public Health Service know even less about low-level and multiple-chemical exposures than about anthrax. This should terrify us all rightfully. 

 

Tea Bags Could Help in Sick Building Syndrome http://www.newscientist.com , New Scientist Magazine 7/22/00 Tea bags scattered around house soak up formaldehyde by the tannin in dry black or green tea. If suffering nausea and sore throats due to chemicals in fresh paint and glue, or outgassing from new carpet and pressed wood furnishings, use of the bags were found to drop formaldehyde concentration by 60-90% in this Japanese study.

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CFIDS Chuckles 
Dear Friends,
It is with the saddest heart I pass on the following: please join me in remembering a great icon - the veteran Pillsbury spokesman. The Pillsbury Doughboy died yesterday of a yeast infection and complications from repeated pokes in the belly. 

 

He was 71.

Doughboy was buried in a lightly greased coffin. Dozens of celebrities turned out to pay their respects, including Mrs. Butterworth, Hungry Jack, the California Raisins, Betty Crocker, the Hostess Twinkies, and Captain Crunch. The gravesite was piled high with flours. As long-time friend, Aunt Jemima delivered the eulogy, describing Doughboy rose quickly in show business, but his later life was filled with turnovers. He was not considered a very "smart" cookie, wasting much of his dough on half-baked schemes. despite
being a little flaky at times, he even still, as a crusty old man, was considered a roll model for millions.

Toward the end it was thought he would rise again, but alas, he was no tart. Doughboy is survived by his wife, Play Dough; two children, John Dough and Jane Dough; plus they had one in the oven. He is also survived by his elderly father, Pop Tart. The funeral was held at 3:50 for about 20 minutes.

- submitted by Lavon Sigmon

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Newsletter Submissions welcome! If you have a CFIDS Chuckle, recipe, bit of info to pass along about a good doctor, treatment that's worked for you, or would like to briefly share your CFIDS/FMS/MCS story with our readers, please email us at uncmom59@aol.com , or mail your submission to: 

Mary Holt, 

101-U Misty Wood Circle, 

Chapel Hill, NC 27514. 
Editor may need to edit due to space considerations. Thanks for sharing your news with your fellow group friends! 

How to Make a Good Office Visit Better - from the National Family Caregivers Association

1. Write down questions so you won't forget them.
2. Be clear about what you want to say to the doctor without rambling.
3. Make a consultation appointment if you have a lot of things to talk about, so the doctor can llow enough time to meet with you in an unhurried manner.
4. Educate yourself about your disability.
5. Learn the routine at your doctor's office and/or hospital.
6. Recognize that not all questions have answers, especially those beginning with "why." 
7. Remember you and your doctor are usually (*Eds note) on the same side.
8. Appreciate what the doctor is doing to help and say thank you from time to time.

VOLUNTEER HELP NEEDED! We have had several committee members move leaving vacancies. We need more assistance from our members in volunteering for positions. If you can help, please contact Marvina Powers, 336-476-4032 ( mpwrs5@cs.com ). If we don't have response, we will have to reevaluate continuing in our present format. You are NEEDED! You don't have to be well - in fact your present committee members are not either :) so give Marvina a buzz and volunteer. 
Thanks!

Insomnia Self-Treatment. A free "sleep diary" at www.sleepfoundation.org  Spend time documenting your sleeping habits, and connect with sleep specialists in your area.
- Courtesy JD Jungle

Fatigue Syndrome could be caused by household chemicals 

www.ananova.com/news/story/sm_462491.html

 Dr. Abou-Donia, of Duke University, reports rats exposed to insect repellent and an insecticide suffered brain cell death "consistent with muscle weakness, joint pain and problems with the central nervous system. Also there was more susceptibility to damage if under stress causing minor breakdown of blood-brain barrier letting chemicals permeate brain more easily.