Appendix D

Organizational Support

appendix_d Organizations provide support, advocacy, and education regarding MCS. Here, Dr. Grace Ziem speaks at the CIIN MCS conference in Fairfax, VA in October, 2003.

Excerpt from p. 359:

Groups Offering Information, Support, and Advocacy
Canaries Foundation, Inc.
Chemical Injury Information Network (CIIN)

CIIN is a "charitable support and advocacy organization run by the chemically injured for the benefit of the chemically injured. It focuses primarily on education, credible research into Multiple Chemical Sensitivities (MCS), and the empowerment of the chemically injured." The newsletter Our Toxic Times is published monthly by editor and director Cynthia Wilson. Special features of each issue include summaries of recent relevant research. (Suggested membership donations are: Fixed income - $15; Employed individuals - $30; Professionals - $50)

Chemical Sensitivity Disorders Association (CSDA)

Newsletter: The Chemical Sensitivity Connection. Support line. "CSDA was established to provide information and support to chemically sensitive people . . . to disseminate information to physicians, scientists and other interested persons: and to encourage research on chemical sensitivity disorders and minimizing hazards to human health. Larry Plumlee, M.D., president. Send $10 yearly to join and receive newsletter and meeting schedule.

Chemical Sensitivity Foundation

"Our mission is to engage in scientific, charitable, and educational activities on behalf of people with multiple chemical sensitivity (MCS), with goals of funding research to validate the existence of MCS, pilot projects for MCS housing, and raising public awareness." —Alison Johnson president.

Chemsense(associated with Chemical Sensitivity Disorders Association)

There are two locations for this group, in Northern Virginia and Maryland. Meetings are occasional and offer advice, support, as well as information on toxic substances in the area.

Chronic Fatigue Syndrome, Fibromyalgia, and Chemical Sensitivity Coalition of Chicago (CFCCC)

This group is a merger of the Chicago Chronic Fatigue Syndrome Association and MCS: Health and Environment, and is "organized for support, education, and advocacy for persons with chronic fatigue syndrome, fibromyalgia, and chemical sensitivity." Offers support, information, and newsletter "The Canary Times."

The Chronic Syndrome Support Association

This organization is geared towards education of various invisible chronic illnesses like MCS. Also on the website is a person who seeks to give advice to those who are having problems with intimacy as they relate to having a chronic illness. A newsletter is available "The Syndrome Sentinel," as well as books and videos.

Circuit

This group is based out of the United Kingdom and is geared towards people who have been made sensitive by electromagnetic fields. They research and offer information about the hazards of electricity. Send a self addressed, stamped envelope in order to receive their newsletter.

Ecological Health Organization (ECHO)

ECHO is a statewide nonprofit advocacy, support, education and referral organization for people disabled with Multiple Chemical Sensitivity (MCS) and others who care about its prevention. Founded in 1992, ECHO is one of the first organizations in Connecticut linking environmental issues and public health. A donation in any amount will make the donor eligible for membership in ECHO for one year. Membership includes a very helpful 30-page Resource Guide and a newsletter published jointly three times per year with MACI - Massachusetts Association for the Chemically Injured.

Environmental Health Network (EHN)

EHN focuses on "the issues and developments relating to the health and welfare of the environmentally sensitive." The newsletter is The New Reactor. Organization has put particular energy into documenting the problems with fragrances. Large, informational website.

Fibromyalgia Coalition International
Massachusetts Association for the Chemically Injured (MACI) Inc.

MACI is a statewide support, education, resource, and referral organization that began as a local support group and grew into statewide recognition. Services now extend to other New England states. They now hold support meetings in Boston, on the Cape and in Central MA.

MCS - Danmark

MCS – Danmark is a Danish patients' organization. We aim at campaigning for proper medical recognition of MCS, offering the latest news and essential information on this illness, helping individuals with MCS, and arranging social activities for members.

\ME/CFS Society (SA) Inc.

This organization is primarily in South Australia. They are dependent on support from members and other individuals. Their services include promoting government recognition of the issue as well as education on ME/CFS. They also promote research and provide support to individuals. Regular membership is $32 but there is a reduced amount for those who are unemployed or students ($22) or after the first half of the financial year (which begins in July). A subscription to their magazine "Talking Point," is a benefit of membership.

Multiple Chemical Sensitivities Task Force of New Mexico

Volunteer advocacy organization comprised of chemically sensitive New Mexicans. Dedicated to raising awareness of MCS and educating others about the hazards of high and low level chemical exposures, especially to pesticides. Provides information and referrals regarding resources in New Mexico.

National Center for Environmental Health Strategies (NCEHS)

Mary Lamielle, director. NCEHS is a nonprofit organization committed to education, research, support, and advocacy services on environmental and public health issues including environmentally and occupationally induced illnesses.

North Carolina Chemical Injury Network

This site contains a vast amount of information on various topics related to chemical injuries as well as links to other groups. They offer an email list for the planning of MCS Awareness Day. Membership is available to those who have some form of connection to the state.

Ohio Network for the Chemically Injured

Educational and advocacy group that is very active. Has initiated a large number of projects, including the "Healthier Hospitals" book.

In Canada

Allergy And Environmental Health Association Canada, Branches:

EHA/AEHA BC -Ecological Health Alliance
AEHA - Kitchener Branch
AEHA - Nova Scotia (AEHA-NS)

This is a group that is geared towards people with MCS and related illnesses so that they can share information. Membership is not limited to Canadians. Use of the message board requires membership. To become a member, a Yahoo! Account (which is free) is necessary as well gaining the approval from the group. The website has a list of other support groups, pamphlets, accommodations, and other resources.

AEHA - Ottawa Branch
AEHA – Prince Edward Island, Sandra Boswel
Environmental Health Association of Nova Scotia (EHANS)

"EHANS is a non-profit, province wide education, advocacy and action organization established in 1985. The EHANS mandate is to increase knowledge and awareness of environmental health issues stressing prevention, recognition and treatment; and to advocate for fair and equitable treatment of persons with environmental illnesses."

Membership $25 per year; Pay What You Can Membership - $5 or more Canada, $10.00 or more U.S. Membership includes semi-annual newsletter and e-mail bulletins of general interest.

Environmental Illness Association of Canada

Online Support and Information
Chemical Injury Relief Foundation (CIRF)

Founded by Brian Hack, CIRF seeks to educate people on the issue of injuries due to chemical exposure. Available on the website is a library of research on MCS, CFS, and Fibromyalgia.

Dr. Rapp

Website of Dr. Doris Rapp, a physician of environmental medicine. Author of a number of books, particularly on children and sensitivities. Is This Your Child? and Is This Your Child's World?

Environmental Illness Resource (EIR)

This site has a compendium of resources, including articles, forums, and details regarding the latest illness research. The site covers chronic fatigue syndrome, fibromyalgia, and MCS, including many links, and some petitions. Also included is a store that offers filters, vacuums, supplements, cleaning and personal care products, and other products.

Health and Environment Resource Center

"The non-profit Health & Environment Resource Center was created in 1997 by Earth Angels Association, Inc. as a source of information for people seeking to learn more about the relationship between the environment and human health." Webmaster Andrea DesJardins. Site has message board, newsgroups, articles, the Earthweb Project, newsletters including Sharon Wachsler's "The Clarion" (see below).

Jacki's Web Site (Our Little Place)

A personal Web site, includes a range of topics including MCS, Chronic Fatigue Syndrome, Fibromyalgia, health risks of perfume & other scented products, "Guidelines for Non-Toxic Living," information on detox baths, resources, links, and on-line ordering of MCS books. One of the pages has a decent list of no-toxic products/substitutes including cleaning, pesticides, personal care. See http://www.ourlittleplace.com/nontoxic.html

JMU MCS Research Team Website

Has Pam Gibson's research papers, other MCS resources, and links.

Mary Kempf's Website

Extensive and broad coverage of MCS issues and resources. The following link focuses on EMF issues.

MCS: A Survival Guide

This is the website for Multiple Chemical Sensitivity: A Survival Guide, 2nd Edition. It allows you to read excerpts from and/or order this book.

MCS-Global

Website: http://www.mcs-global.org

Global Recognition Campaign for Multiple Chemical Sensitivity, Chemical Injury, Chemical Hypersensitivity, Environmental Illness and other chemically induced illnesses and diseases affecting Civilians and Military personnel. This is a comprehensive educational and activist site dedicated to recognizing environmentally-induced illnesses and identifying and reducing the toxics that cause them. Included are articles, people's stories, public health alerts, petitions, many links, and other information. Diana Buckland established this campaign after she and her son were harmed by pesticides.

MCS Guide (from Ability Maine)

Website: http://www.abilitymaine.org/guides/mcs.html

Developed by Sharon Wachsler. Extensive resource list sorted out by type. Type of websites range from those housing materials to individually owned pages and medical information.

MCS Heightened Senses Network

Website: http://p217.ezboard.com/bmcsheightenedsensesnetwork

The MCS Heightened Senses Network is a purely online discussion. Here there are member journals where you can, once a member, record your responses to your form of treatment. A listing of environmental doctors by state is also available. Membership is free.

Online Newsletters
The Clarion

"[T]he newsletter of information, resources, and activism for people with MCS (multiple chemical sensitivity), CFIDS, (chronic fatigue immune dysfunction), related disorders, and our allies." Has exhaustive information and resources, and activist opportunities. Excellent way to stay current. To receive "The Clarion" by e-mail, contact Sharon at Swachsler@aol.com

Find an MCS support group in your area. Website: http://mcs.meetu.com/

Planet Thrive

"A grassroots community for personal wellness with a focus on the health-environment connection." Offers discussion forums, blogs, resources, recipes, videos, Ask An Expert advice columns featuring Dr. William J. Rea (founder and director of the Environmental Health Center-Dallas), Dr. Jacob Teitelbaum (CFS and Fibromyalgia expert and author of From Fatigued to Fantastic!), master herbalists Stephen Harrod Buhner (author of Healing Lyme) and Susun Weed, and others, plus much more. Membership base includes those recovering from Lyme Disease, Chronic Fatigue Syndrome, Fibromyalgia, Chemical Sensitivity, Mold Illness and other chronic environmental illnesses.

Julie Genser
Founder and Director

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