Brainstorms

MARCH/APRIL 2002

*MARCH/APRIL 2002

NIGHT MEETING

* 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.

Call Fran Stanford at 292-7446 or Marvina 476-8933 if you are interested in late morning or early afternoon meeting!

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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.

- Source: MS magazine, February 2002

CFS subjects have a higher level of complaints in many systems including the nose. They appear to have an irritant (nonallergic) rhinitis with increased mucin production and mucosal friability (epistaxis of hemoglobin). Nasal and systemic drugs do not explain these significant baseline changes.

- Journal of Chronic Fatigue Syndrome

Vol. 10(1) 2002, pp. 3-15.

From Co-Cure Web Site http://www.co-cure.org

To aid the public in educating themselves in such matters, 911 ASH has put together a website with information about World Trade Center toxins, health risks and safety equipment. Also gives ideas for use in clean-up. Website address is

Researchers Identify A Key "Brake" of the Immune Response Columbia University College of Physicians & Surgeons scientists say they have identified ILT3 and ILT4, a key pair of molecules that could help precisely regulate immune response to help treat a variety of diseases. The molecules function as a brake for immune response. See the Jan. 27 online version of Nature Immunology.

Reduced Medical Fees Millions of Americans lack adequate insurance coverage for prescription medications. The Patient Assistance Network is a volunteer organization that helps people find ways to cover some of the cost of their medication. They do this by helping people apply for rarely publicized drug manufacturers' assistance programs. If a person's income is too high to qualify for these programs, they help them get a pharmacy discount card that can save up to 20 percent on drug costs. To learn more, contact the group at (800)277.0530 or http://www.patientassistancenetwork.org

The Medicine Program- http://www.themedicineprogram.com/news/

The Cost Containment Research Institute -

That chronic fatigue and chemical sensitivity are related should surprise no one. Fatigue has long been recognized as a hallmark of inflammation--whatever the etiology. Patients with inflammation resulting from infections, autoimmune diseases, and allergic diseases all experience fatigue as a significant and disabling part of their illness. Inflammation induced by chemicals also leads to fatigue.

Surveys of chemical sensitivity are concerned with the back end of the process. The front end of chemical sensitivity is a patient with one or more chronic diagnosable conditions and with no acute reactivity to chemicals. Removal of the patient from the chemical environment causes resolution of the chronic condition, and it is replaced by acute reactivity to chemicals. Chronic exposures mask the acute reactivity. A 4-stage process is observed:

1) individuals lose their adaptation and progress from well-being (stage 0[normal tolerance]) to

2) having irritant responses to chemicals (stage 1 [diseases ending in algia]), to

3) having inflammatory responses (stage 2[diseases ending in itis]), and finally,

4) tissue damage (stage 3 [diseases ending in osis] ).

Prior to the development of tissue damage, individuals can move between the stages as exposures wax and wane. Surveys designed to detect the prevalence of chemical sensitivity will only detect the unmasked patients and are sure to underestimate the prevalence.

The high prevalence of chemical sensitivity approaches that of allergy and mandates that our society should quit sweeping chemical sensitivity under the rug. It is time to focus a tiny fraction of our resources for biomedical research of this problem. - William J. Meggs, M.D., Archives of Environmental Health Sept./Oct. 199, Vol.54 (No.5). (These excerpts included by Janet Dauble in Vol. 18, Share, Care and Prayer, a nonprofit, Christian organization encouraging, educating and equipping the Environmentally Ill (those sensitive to foods, chemicals, molds, and other inhalants as well as those suffering from Candidiasis, CFS and Fibromyalgia.)

Add to MCS Docs ListDr. Paul Harris, Greensboro

336.632.9100

Andre Lorde says of black women and men, but it is true of all persons suffering discrimination with CFIDS/ME as well,

"It is axiomatic that if we do not define ourselves for ourselves, we will be defined by others - for their use and to our detriment." - Susan Wendell, The Rejected Body: Feminist Philosophical Reflections on Disability

CFIDS Chuckles

"Foget" is an Australian typo - for the word forget - and now it means forgetting because of brain fog! I think fogetting needs a place in the English language as a very apt descriptive word don't you?- Source: Dorothy Morris