Welcome to the Clarion -- a sporadic newsletter of information, resources, news, and activism for people with multiple chemical sensitivity (MCS), chronic fatigue immune dysfunction syndrome (CFIDS), related disabilities, and our allies.
Welcome to a mini edition of The Clarion, the sporadic newsletter of information, resources, and activism for people with multiple chemical sensitivity (MCS), chronic fatigue immune dysfunction syndrome (CFIDS), fibromyalgia, related disabilities, and our allies.
This one contains lots of classifieds, including some on housing, as well as Web resources. There are also notices about conferences and surveys and activism activities by some in our community. At the bottom you'll find my library of articles.
I hope you find this Clarion useful. And, if you ever have announcements, classifieds, etc., for future Clarions, please don't hesitate to send them to me at Swachsler@aol.com.
**Feel free to forward any parts of the Clarion or the whole thing. :-) **
CLASSIFIEDS * * * CLASSIFIEDS * * * CLASSIFIEDS
NEW FIBROMYALGIA GUIDE AT ABILITYMAINE.ORG
AbilityMaine.org has created a Fibromyalgia Guide which provides information and resources on the Web relating to fibromyalgia. The site is intended to be useful to people with fibro as well as to those who want to learn about the illness. Sections include fibro organizations, articles about living with fibro, support group and medical resources, a bibliography of books and videos, and more.
Other guides at abilitymaine include guides for MCS, CFIDS, Obesity, Autism, and more.
To check out the new fibromyalgia guide, go to http://www.abilitymaine.org/guides/
NEW FRAGRANCE BROCHURE IS NOW AVAILABLE!
The nonprofit organization, the Environmental Health Coalition of Western Massachusetts, has revised its very popular fragrance brochure. The new brochure, "The Hidden Dangers of Fragrances" provides fragrance facts, and discusses symptoms, health effects, problematic products, accessibility issues, safer products, and resources for learning more and purchasing less-toxic products. The brochure also includes brief "vignettes" about people whose lives have been adversely affected by fragrance chemicals. If you would like a free sample copy of the brochure, please send a self-addressed stamped envelope (SASE) to EHCWM, P.O. Box 187, Northampton, MA 01061-0187.
GET A MONTHLY DOSE OF DISABILITY HUMOR
Some of you may know that I write a monthly humor column on life with CFIDS, MCS, and fibro for abilitymaine.org. If you appreciate the funny side of chronic illness (and life in general), please drop me a line at firstname.lastname@example.org. I'll add you to my monthly e-bulletin list which will alert you to the topic and address for my latest column. Sometimes the bulletin also includes notices of my writing at other locations or deals at sickhumorpostcards.com. Past columns have included "Doctor-to-English Dictionary," "Pap Goes the Wheezer," "Battling for Healthcare: A Prescription for Frustration," "Absolutely Cognificent," and "The Hindrance Dog." You can peruse my column archive at http://www.abilitymaine.org/Sharon.htmlWhether it's misbehaving service dogs, brain fog, or ditzy doctors, I'll tackle it! E-mail SickHumor2@aol.com to get your monthly dose of free disability humor.
MCS ROOM FOR RENT IN WESTERN MASS.
Large room for rent in Pelham. Shared bath. Kitchen privileges. Mainly nontoxic. $300/month. 413-253-4166.
MCS VACATION HOME EXCHANGE FOR LATE SUMMER OR EARLY FALL
Looking for a nontoxic, low-cost way to get away? Switch houses with me for a few days!
MY HOME is in a very secluded, woodsy area with great air in the foothills of the Berkshire Mountains in Western Massachusetts. LOTS of windows and southern exposure, gorgeous views. All electric, no carpeting, very nontoxic. Nearby state forest with wheelchair accessible trail has lake for swimming, canoeing, fishing, as well as forest for hiking. Restaurants, shops, etc., nearby, including natural foods coop. Oxygen delivery no problem. Small house has one large bedroom, living room, kitchen, bathroom. (So it's good for a couple or single person, although there's also a single futon in the living room for a second/third person.) I have pets so this is not a good fit if you're allergic (although I won't leave them in the house while I'm away unless you wish); variably moldy basement that is sealed off from main floor.
YOUR HOUSE should be very nontoxic, low mold, no gas/propane, not near any pesticiding/herbiciding, highways or industry, and within a six hour drive of Western Mass. (Mass., CT, RI, Maine, VT, NH, NY, etc.). Near a body of water/beach is a big bonus. Organic and whole foods shopping nearby a plus (though not required), as is oxygen delivery. Cat-sitting no problem. I will be bringing my extremely well-behaved, hypoallergenic, clean service dog with me.
We'd like to take our trip in September or possibly October. Depending on various factors (such as travel distance) could be for a couple days up to a week. If you're interested in getting away, please e-mail SWachsler@aol.com or phone 413-625-9820.
HOUSE FOR SALE -- PREVIOUS OWNER HAD MCS & USED WHEELCHAIR
Marfa, Texas, 26 miles from college town (Alpine).
Marfa's population is 2,400. Clean dry air, elevation 4668 ft. No farming for 65 miles, no industry. House built 1915. Brick exterior, renewed cement btwn bricks. 12 yr-old paint, 11 yr.old roof. Heating ducts to Dr. Rae's specs. MCS owner last 6 years, nontoxic elderly owner prior. One rampable step up to porch, former owner used wheelchair. On paved road. 1938 square feet plus porches. 10-foot ceilings. 3 "Casa Blanca" ceiling fans. Patio, grape arbor, fruit trees. Interior walls are stucco. Kitchen counters are stainless steel. Rental unit counter is porcelain. On 1/3 acre fenced with chain link. Great health food store in Alpine.
Tucson Coop Warehouse buying club. Has rental unit attached with own bathroom. 2-car detached garage, wired 220. Next door neighbor present 2 wks./year. Asking $165,000.
Call Livingston Real Estate at (432) 729-4306.
COMPUTER/READING BOX PARTS AVAILABLE
I have a "partial" computer (or reading, or printer) box that I don't need. It includes a thick piece of glass, 2' x 2', mounted in a stainless steel frame 9.5" deep, with one opening for venting. Basically, it's like a reading box with no bottom that is open on one side. I also have 2 other pieces of steel, about 22" long x 9" high, one of which has a vent/duct installed, both of which have holes for vents (I think these are for putting in your window) as well as another piece of steel about half that size. I also have 2-3 aluminum ducts (collapsable/expandable for different lengths' use). I thought I could make it work for my project (laptop box), but have decided to go with lighter-weight materials (aluminum and Plexiglas). Any or all of it is free to anyone who can pick them up or pay for shipping. (Depending on where you are I might even be able to drop them off.) If you're interested, e-mail SWachsler@aol.com or call 413-625-9820.
MCS ORGANIZATION SEEKS BOOKKEEPER
The Environmental Health Coalition of Western Massachusetts is in need of a bookkeeper. EHCWM is a nonprofit, all-volunteer organization of people concerned with the effects of environmental contamination on human health
Right now we are a small, grassroots organization, with an income of less than $2000 last year. But we are planning to grow. We estimate the time commitment for our bookkeeper at this stage would be very minimal.
We prefer someone with experience with the kind of record-keeping needed for 501(c)3 reporting. The volunteer we had has withdrawn due to health reasons. We are hoping for a volunteer or someone who could do it at low-cost. It is likely that all or most of the communication between the bookkeeper and the EHCWM leadership could be done via mail, e-mail, and telephone; therefore an interested persons outside of Western Mass. is encouraged to respond.
If you know of someone who might be interested, please call me at 413-625-9820 or e-mail me at SWachsler@aol.com.
We really need a bookkeeper! Please help spread the word!
WRITING & CREATIVITY CLASSES ONLINE
If you're a writer -- or an aspiring writer -- and you can't go to "live" writing groups or classes due to your disability or illness, then you might be interested in "Dancing with the Muse," an online writing class taught by a person with disabilities herself. To learn more about my online classes, please visit www.sharonwachsler.com. If you think you might be interested in taking a class in the future, please e-mail me at email@example.com and ask to be added to my alert list for writing classes. :-)
** NEWS ** INFORMATION ** ACTIVISM **
SURVEY OF YOUTH WITH DISABILITIES ON FINANCIAL AID
Note from Sharon: I couldn't open the attachment that contains the survey. Thus, to request a survey, please write directly to Rebecca at her e-mail address at the bottom this entry or to firstname.lastname@example.org. Thank you.
From: Rebecca C. Moore, Youth Advisory Committee, National Council on Disability, Rebeccamoore@optonline.net
Disability, college, and financial aid -- Request for youth feedback
Please share the below:
I'm writing because we share an interest in the issues of students with disabilities. I am a member of the Youth Advisory Committee of the federal National Council on Disability, a network of young leaders ensuring that youth have a voice in national disability policy.
Our Youth Advisory Committee needs your help to reach college and graduate students with disabilities who can share feedback about their financial aid experiences. We are working on related policy recommendations and will write a report based on youth's concerns, stories, and suggestions. Stories about youth's experiences are valuable because so little has been reported directly from youth about their perspectives on disability and financial aid.
Please help us by sharing the attached College Student Inquiry with as many young adults with disabilities as possible, and let us know if you have stories to share, as well. If you have an e-mail list, support group, newsletter, office bulletin board, or other connections with youth and disability organizations, please use those connections to help spread the word about our need for college students' feedback. We are counting on you to let youth with disabilities know how much we value hearing from them. Please ask them to send their feedback to us as soon as possible (by October 30 at the latest) at email@example.com. Write to us at that address if you need large print or Braille versions of the file.
In addition, please subscribe to our Youth Advisory Committee News List, which will occasionally notify you of NCD Youth Advisory Committee efforts such as this inquiry, reports on youth issues, and public meetings. Be a part of our network. You can subscribe by sending an e-mail to n firstname.lastname@example.org.
We need your participation to strengthen this network of youth disability leaders. By joining our e-mail news list and sharing our inquiry with college students and related professionals, you will help us build a great, grassroots mechanism for teens and young adults with disabilities to improve their lives. Please let me know if you have questions about the inquiry and if you'd like to stay in touch.
Rebecca C. Moore
Co-Vice Chair, Youth Advisory Committee, National Council on Disability
Home Address: 21 Hudson Drive, Hyde Park, NY 12538
Home E-mail Address: email@example.com
AAPD and NOW Join Forces to Co-Sponsor Women with Disabilities & Allies Forum
Dated 5/4/03, from firstname.lastname@example.org (Justice for All)
"Women with Disabilities Forum"
An AAPD and NOW Press Release:
AAPD and NOW Join Forces to Co-Sponsor Women with Disabilities & Allies Forum
Three-Day Meeting to be Held October 2003 in Bethesda, Maryland
WASHINGTON, DC -- The American Association of People with Disabilities (AAPD) and the National Organization for Women (NOW) Foundation announce that they will hold a joint forum on disability and women's rights October 17-19, 2003. Entitled Women with Disabilities & Allies Forum: Linking Arms for Equality & Justice for All, the three-day summit will address issues of mutual concern to the feminist and disability rights movements.
"Now more than ever, disability rights advocates must cultivate diverse allies in our common struggle for justice, dignity, and respect for human and civil rights. AAPD is delighted to join with the NOW Foundation to bring together leading activists and organizers this October for an historic opportunity to reinforce and reinvigorate our combined efforts to achieve equality, empowerment, and justice for all," said AAPD President and CEO Andrew J. Imparato.
"All women--including women with disabilities--share the dream of full equality, economic and personal independence, educational and employment opportunity, reproductive freedom and full participation in society," said NOW Foundation President Kim Gandy. "Women living with disabilities face multiple forms of discrimination, making it even harder to achieve their goals. Breaking down these barriers is a long-standing priority of the NOW Foundation."
The Women with Disabilities & Allies Forum: Linking Arms for Equality & Justice for All will begin Friday, October 17 at 5:00 p.m. and conclude Sunday, October 19 at 4:00 p.m. It will be held at the Hyatt Regency Hotel in Bethesda, Maryland.
AAPD and the NOW Foundation anticipate that this Forum will bring together a diverse group of women from across the country to discuss a broad range of issues and share ideas, and that it will celebrate AAPD's and NOW's common ground and help all women work toward creating a future that values and embraces them.
The forum will be kicked off Friday evening, October 17 with a welcome reception and entertainment. Saturday, October 18 and Sunday, October 19 will be combinations of plenary sessions, workshops and facilitated panel discussions.
Forum discussion topics will include women's economic empowerment, political activism and grassroots organizing, judicial nominees, Title IX, prenatal testing and abortion rights, health care, hate crimes, violence against women and inaccessibility of shelters, the future of civil rights, and how to bring together the disability rights movement and feminist movement issues.
The Forum's registration form will be available in late July on both the AAPD (www.aapd-dc.org) and the NOW Foundation websites (www.nowfoundation.org), and the early bird registration deadline will be August 26. Please visit those websites for additional information and future announcements regarding the Women with Disabilities & Allies Forum: Linking Arms for Equality & Justice for All.
The American Association of People with Disabilities (AAPD), the country's largest cross-disability membership organization, promotes the economic and political empowerment of all 56 million children and adults with disabilities in the U.S. It was founded in 1995 to help unite the diverse community of people with disabilities, including their family, friends and supporters, and be a national voice for change in implementing the goals of the Americans with Disabilities Act (ADA). AAPD members have access to a full range of financial services through a federal credit union, a discounted mail order prescription program, and a quarterly AAPD newsletter. For additional member benefits, or to learn more about AAPD's advocacy efforts and major program areas, visit www.aapd-dc.org.
The NOW Foundation is a 501(c)(3) organization established in 1986 to enhance the status of women in the United States and worldwide through education, advocacy and litigation. The NOW Foundation is affiliated with the National Organization for Women, the largest women's rights organization in the U.S. In its educational and advocacy efforts, the Foundation works to inform the general public, as well as policymakers, about the need for fair and equal treatment of women. The litigation efforts of the Foundation seek to protect reproductive health options for women, as well as focusing on other concerns, such as employment issues, pregnancy discrimination, sexual harassment, lesbian and gay rights, civil rights and ending violence against women.
Dated 7/8/03, email@example.com (Justice for All) writes:
Second RFP -- AAPD and NOW Foundation Forum Workshops
AAPD and the National Organization for Women (NOW) Foundation recently issued a Request for Proposals for all Workshops for the "Women with Disabilities and Allies Forum" that will be held October 17-19, 2003, at the Hyatt Regency Hotel, Bethesda, Maryland.
Please note: another Request for Proposals has been issued for four workshop topics: Emerging Leaders-Young Feminists and Disability Rights Activists; Aging and Disability; Lesbians with Disabilities; and Body Image. The deadline has been extended to July 21, 2003 for the submission of proposals for these workshops only.
Please visit the AAPD web site for instructions on submitting proposals: www.aapd-dc.org.
WALL OF THE CHEMICALLY INJURED -- AWARENESS/ACTIVISM PROJECT!
Dated 6/23/03, MonarchPub@aol.com writes:
Thanks to all who have been sending in names of the deceased for the Wall for the chemically injured (we still need an official name, you guys). I really appreciate your contributions. I am getting more inquiries from potential posters everyday, too, which is encouraging. Remember, I need photographs and information about those still LIVING, too. And the guidelines for being up on the Wall (following this update) MUST be adhered to.
In this update, I wanted to address a question some folks are posing to me as to why there isn't information about the Wall posted up on my website. The reason is I wanted to present this project to the chemically injured community FIRST, privately, before presenting it to the whole world. There are enough of us out here already to fill an entire website...and then some. Also, I didn't want to be getting inquiries from the general public yet, who are unaware of the specifics of chemical injury and chemical sensitivity. Imagine the emails that will start flowing once information about the Wall is up... I have many irons in the fire at the moment and can only spread myself so thin. I know you understand.
Please continue to spread the word about the Wall in your emails and newsletters, and by word of mouth. And send in your own photos and stories. When the Wall has a ton of people up on it, I will announce it in a big way, including releases to the press and letters to EVERY politician in America. You don't want to miss out on that moment, do you? <grin>
AND. . . .
In a message dated 6/17/03, MonarchPub@aol.com writes:
Just a follow-up and clarification regarding the "wall" for the chemically injured I am trying to set up on my website, www.theenvironmentalconnection.com. The original message I sent out previously is included below for reference:
1. So far, I have had only three responses and they are not definite. I need MANY more than this to create a "wall."
2. Special thanks to those of you who are trying to help spread the word about this project via emails and in various newsletters. Please keep at it.
3. For now, I am using the name "MCS Wall" but I don't want this to be the official name in the end. I do not want the focus to be MCS but ALL who have been chemically INJURED and I believe the title of the project should reflect that. I'm trying to come up with an official name now ("Chemically Injured Veterans Wall???") and welcome your creative suggestions (if used, your contribution will be duly acknowledged, of course). No "canary" titles please.
4. One of the people who responded was interested but wanted me to change the rules due to concerns about privacy. I understand and respect such concerns, but am not changing the rules. I'm just reiterating this should any of your members contact you about this, too. The Wall will not be credible if people's full names are not a part of it. And people MUST have been medically diagnosed with illness due to chemical injury to be placed on the Wall, too. I hope to bring national attention to the Wall with extensive press (including interviews and various events) in the future (provided I have a substantial number of names and faces posted there), so I MUST do this on the up and up. In addition, while I truly DO understand folks' concerns about privacy, I also know we will never get much accomplished living in fear.
Dear Friends, Colleagues and Distinguished Scientists,
As part of my website, I am creating a "wall" of the chemically injured. This has long been a dream of mine: to put a face on the chemically injured and sensitive in a big way. The internet offers us an enormous opportunity to teach the world about our plight and help others avoid the same. It presents us with a unique forum to effect change by educating the "powers that be" about the pervasive problem of neurotoxic and endocrine-disrupting chemicals in our environment.
The wall will feature those alive and deceased. There will be a place for a photograph (or two) and a profile of the person or family poisoned. I am appealing to you for your own photograph and story (and those who you've lost to this illness) and also asking that you spread this e-mail around to those you know who have been chemically injured, too.
There are two caveats:
1) All individuals/families on the wall MUST have been diagnosed by a physician to have been made ill, become disabled or die as a result of exposure to some chemical or chemicals (or mold). In other words, there HAS TO BE a record of medical proof of the illness or poisoning due to chemicals (or mold). It can be a one-time poisoning or ongoing.
**While I know there are many out there who have been poisoned who can't find, get to, or afford a doctor who can and will properly diagnose them, I MUST stick to this rule about the person/family having medical proof as I am certain I will be challenged on this at some point. I will put something on the Wall acknowledging the others, too.
2) Contact information MUST be included (full name, address, phone number, plus e-mail, if available). This is in case I have questions when writing/editing the profile of the individual or family, AND to have a legitimate record.
NOTE: Full names will be used, the person's state will be named, but specific location (town, city, address), affiliations (unless the person wants them listed) and other private information will NOT be divulged by me under ANY circumstances EVER. And I will NEVER reveal patient medical information or contacts. Also, any edits I do on profiles will be approved by the individual before posting.
Specifics: I need one or two CLEAR CLOSE-UP photographs in .jpg or .jpeg form (black and white or color). The person should send information about themselves or their family such as how they were poisoned, the age at which they were poisoned, and the name of the chemical or chemicals that made them ill. Newspaper stories on the person, family or the poisoning event are encouraged. People may write their own profiles or I am happy to write one for them. I reserve the right to edit profiles for clarity, length, content and style, but be assured, I will be very sensitive to the person's/family's story and "voice." Those who have founded, who manage or who are otherwise involved in an ecology and/or environmental health-type organization are welcome to include their group's contact information, or I can include a link to its website. People may send their photographs and profiles to my attention via e-mail at MonarchPub@aol.com or by regular mail at Monarch Publishing Group, P.O. Box 157, Conifer, CO 80433. **They should mark the subject area of their e-mail message "MCS Wall." This is very important as I routinely delete e-mail messages from people I don't know unless the subject title has to do with specific issues I'm working on.
**I ask that those of you who are doctors and in other levels of academia who have been chemically injured to please consider sending your photograph and story, especially. I would like to see religious figures, celebrities and our beloved veterans who have been poisoned up on the wall, too. And the children... The goal is to show the world that chemical poisoning crosses both genders, every age, every location, every occupation and every level of education.
Won't you join me in putting a face on the epidemic of chemical injury and sensitivity? Let's show the world who we are. If we don't, it will be the John Stossels of this world who will do it for us (shudder). My family and our story will be there. Don't leave me up there all alone. :-)
CONNECTION BETWEEN ADD, CHEMICAL SENSITIVITY, AND FOOD ALLERGIES
Dated 5/19/03, firstname.lastname@example.org writes:
http://www.hhi.org/ is the URL for the Hyperactivity Helpline, Inc. (HHI), formed to allow people who share common experiences, situations, or problems with hyperactivity/attention deficit disorder (ADD), chemical sensitivities, and allergies to offer each other support and to share experiences. This group also publishes a fine newsletter, "Fine Print". Fine Print 202 cites a UK-government study which concluded that "significant changes in children's hyperactive behavior could be produced by the removal of colorings and additives from their diet". They also said "the findings of the present study suggest that benefit would accrue for all children from such a change...":
Food additives linked to hyperactivity: study
The Asthma & Allergy Research Centre on the Isle of Wight analyzed the effects of different additives on 277 three-year-olds. The additives are found in potato chips, candy and pop
The additives were:
For two weeks, the children drank fruit juice dosed with 20 mg in total of artificial colorings and 45 mg of the preservative. For the other two weeks, children drank fruit juice identical in appearance but without the additives.
Parents then filled reports assessing behavior such as "fiddling with objects," "disturbing others," "difficulty settling down to sleep," "concentration" and "temper tantrums."
Researchers said "significant changes in children's hyperactive behavior could be produced by the removal of colorings and additives from their diet."
The Food Commission, an independent watchdog, says hundreds of children's foods and drinks contain at least one of the additives used in the study.
"Colorings are used to make products look especially appealing to children," said Annie Seeley, a nutritionist with the commission. "Nearly 40 per cent of children's foods and drinks contain additives."
The commission is demanding the additives tested be removed from children's foods and drinks.
Other experts in nutrition say the findings are sketchy. The British Nutrition Foundation says "it is difficult to define hyperactivity in children."
It also stated: "All additives go through rigorous testing in terms of safety."
Leadership Trainings for College Students with DisabilitiesDated 5/24/03
Leadership Trainings for College Students with Disabilities
CALIFORNIANS FOR DISABILITY RIGHTS
May 15, 2003
Disabled Student Services Directors:
CDR is announcing a scholarship opportunity for a series of leadership trainings for college students with disabilities aged 18-30. The first CDR training will be held on October 5th in LA in conjunction with the Statewide Disabilities Leadership Caucus held October 3rd and 4th.
The focus of CDRs training is to train young leaders to take over the helm of disability advocacy. The focus of the Caucus is to bring together statewide advocates to form a cohesive unit for saving the ADA.
Due to generous grants from the Christopher Reeve Foundation and the California Department of Rehabilitation this CDR training will pay travel, expenses, and registration for the Caucus and CDR training.
Attendance at the Caucus is required in order to participate in the leadership training on Sunday the 5th.
We are excited about the possibilities of this training identifying future leaders in the disability community. Please encourage qualified leaders in your college to apply early. An application is below and attached as an MSWord file.
Applications must be received by August 15th, 2003. Participation will be limited to 18 students statewide. We look forward to receiving applications.
For further information please leave a message for Laura Williams at 800-838-9237 or you may e-mail Laura at LE3293@aol.com, please put in the subject area: training application.
NAME: ______________________________________ AGE: ________ M / F
CITY, ZIP: _________________________________________________
PHONE: ________________________ E-MAIL: ___________________________
COURSE OF STUDY _______________________________________________
EXPECTED DEGREE: ___________ DATE OF GRADUATION______________
NATURE OF DISABILITY ____________________________________________
SPECIAL ACCOMMODATIONS NEEDED: ______________________________
Please include a 300-500 word essay based on the two quotations below and how they relate to the disability community.
"My fellow citizens of the world: ask not what America will do for you, but what together we can do for the freedom of man." -JFK inaugural speech, January 20, 1961
"Life's most persistent and urgent question is: What are you doing for others?" -Dr. Martin Luther King, Jr., August 11, 1957
How do you relate one or both of these statements to the goals and aspirations you hold?
Please attach 2 letters of recommendation from your college or community leaders.
I understand that I am required to attend the other two sessions in the next year. The dates will be determined with input from the group. With my signature I agree to these terms.
This information is being forwarded to you by staff of the California SILC, for educational purposes only. The Council neither endorses nor recommends action on such re-transmitted items unless specifically noted.
HELP KEEP TOXINS OUT OF "ORGANIC" BODYCARE PRODUCTS!
Dated 6/15/03, email@example.com writes:
Please sign petition to USDA and the Organic Trade Association to keep petrochemicals out of "organic" bodycare products. This is an important campaign for those intolerant of chemicals, but of course will also protect the general public from estrogenic petrochemicals like parabens being fraudulently labeled organic, -- as is currently legal due to lobbying from the industry. Interestingly, the industry people (such as Avalon, at the center of the controversy) disingenuously claim no natural preservatives exist. This kind of outright lie is shameful.
NEWSLETTER: THE ENVIRONMENTAL CONNECTION
Dated 6/17/03, MonarchPub@aol.com writes:
Just thought I'd share some good news with you...
Word about my newsletter, The Environmental Connection (TEC), is getting out to the rest of the world, too. Just this morning, I was (again) invited to submit articles to a (new) local publication (circ. 24,500). That brings the number of local publications wanting this material to FIVE in just the last month, with a total readership of 125,500. I am working on getting a regular column published in some of these publications, too, which I hope one day becomes syndicated--no small journalistic feat, I assure you. I am also working on an aggressive online ad campaign for the fall which could educate millions (yes, millions) about these issues.
I started TEC with one goal: to bring the information we in the MCS community already know about environmental health to the general public. To make it "readable" (and compelling) for the rest of the population, as a way of helping to pave the road to more acceptance of chemical injury access and accommodation issues in society. In essence, I envision TEC becoming "the MCS newsletter for the rest of the family;" to make environmental health so understandable and "practical" that the general public (including and especially our POLITICIANS) comes to understand that ALL are affected. To that end, I am surprised but much encouraged to see the positive response I'm getting just on the little bit of advertising I've been able to do thus far.
This is where I need your help: I'm now preparing my mailing list for the July/August issue. Is there someone you think should receive a complimentary copy of TEC? A doctor? Your child's teacher? A county weed manager (we will be running some every cool stories on "noxious weed" management issues in the near future--the website will have a whole section, too, complete with a training video I'm producing!!)? Got a skeptical neighbor or relative giving you a hard time about MCS? Are you in touch with a mayor, local commissioner or congressperson who could use some additional information about these issues? If so, please send me their contact information and I will mail them out a complimentary issue. Please include an e-mail address, if you have one. Don't be shy with lists, either--send as many contacts as you want. And don't worry, I won't pester people with obnoxious repeat emails, mailings or any phone calls. I just send out two complimentary issues and cross my fingers. Think of TEC as the publication that is trying to get in the "back door" about environmental health issues, and who you think needs to know more.
And don't forget to take another peek at the website--we're adding new information and features all the time!
As always, thank you for your continued support and all the work YOU do. Together we ARE making a difference!
GET DEMOCRATIC PRESIDENTIAL CANDIDATES INVOLVED IN OUR CONCERNS
To me there is a possibility that Democratic Party "desperation" could translate into some real idscussion on what we are doing to the environment.
Please look over the following letter and see if you can send it on to friends.
Below is the letter and "boiler plate" info I've been sendingto friends.
I've attached the letter I sent to John Kerry, which is similar to what I sent to Dean, Gephardt, and the Democratic National Committee. I hope they will make sustainability a central issue in the 2004 Presidental campaign. As you can see on "Search.nytimes.com/search" under Seelye, Katharine Q 7/2/03 article on "Democratic Field Tries to add Punch to Environmental Issue," several candidates have moved somewhat in this direction.If this is an idea which makes sense to you, would you:
1: look over the letter to see what might improve it, and pass along your suggestions?
2: consider contacting the DNC or specific candidates yourself?
3: think what organization(s) might pick up on this kind of idea, and either
a: let me know?, or (better)
b: contact them, urging them to ask Democrats to pursue this?
Senator John Kerry
John Kerry for President, Inc.
519 C St., NE
Washington DC 20002
Dear Senator Kerry,
In response to the announcement of your candidacy for President, I enclose a modest contribution to your campaign. Despite George W. Bush's current popularity, I believe you can win the 2004 Presidential Election.
In order to do so, however, I believe you need to present a clear vision of an America that is sustainable, one which taps the deep reservoir of goodwill and latent public-spiritedness of the American people. As our next President, you must be able to articulate that vision in words for average Americans, and display the confidence to lead rather than follow polls or special interests. I believe you have those qualities.
We confront two crises, one immediate, and the other just ahead:
1. The Democratic Party seems rudderless and adrift.2. We face a confluence of factors likely to reach critical levels within the next two decades:
a. The end of cheap energy (greater demand than supply of petroleum);
b. Mass extinctions of animal and plant species due to habitat destruction;
c. Loss of farmland due to lost topsoil and depletion of irrigation aquifers;
d. Depletion of fisheries;
e. Unchecked pollution of our air, freshwater, and oceans;
f. Global Climate Change due to greenhouse gases and destruction of forests.
The global situation begs for positive leadership from the United States. Many, probably most, Americans know we need to do something, but we have had no leadership on these issues since President Carter. Talking about how we can plan to sustain the great positives in our country and planet would connect with millions of voters who seek to act appropriately for their children and grandchildren. A recent search on "Sustainable + Future" at yahoo.com, for example, returned nearly 2 million results!
If you were to spend 20% of your time explaining the urgency of these global problems, and the other 80% discussing concrete solutions to them, you can revitalize the Democratic Party and energize voters who hunger for substance. An appeal to the highest in us will bring out the vitality and problem-solving skills for which we Americans are famous. Tacitly, you would shine a bright light on the limitations and narrow vision of our current President.
The 2002 Senate race in Colorado (Wayne Allard vs. Tom Strickland) exposed a deep vein of public revulsion toward negative, attacking, campaigns. I sense that this feeling is nationwide. Enunciating an achievable vision of sustainability would keep you focused on the positive.
But first you must address an immediate and practical danger confronting us. Destruction of the rainforest or pollution of the oceans is too abstract of a concept for our practical fellow citizens. Start with the immediate future of our own domestic gasoline supply.
Most people pause to take note when they hear that the global demand for gasoline could exceed the supply by as early as 2009. "That is soon," they say. They understand that when that happens, everything will become more expensive. Everything Americans do depends on the cost of gasoline. One writer on global petroleum supplies states that "the bulls say it will happen in 2020, the bears in 2005." One carefully researched book is "The Coming Oil Crisis," by petroleum engineer C.J. Campbell. Or search yahoo.com under "petroleum + depletion."
Our current shortfall of natural gas is a clear example of how price rises when energy demand exceeds supply, but the message about coming gasoline shortages should be delivered (prior to the primaries) by the many petroleum engineers who would love to voice their concerns to a wider audience. Coming from political voices, it might too easily sound only like campaign talk. I am sure groups like the American Council for an Energy Efficient Economy, the American Solar Energy Society, and many others would be all too happy to help contact such oil specialists, if private donors would be willing to fund a well-coordinated national campaign.
Public awareness of the coming gasoline shortage can be a springboard for presentation of a vision of "A Sustainable America," which could transform the 2004 election debates. Rebuilding America to be more sustainable could create major business opportunities which would at the same time create tens to hundreds of thousands of new jobs.
America could regain its place as a beacon of hope in the world. Instead of being a big rogue nation, we could be leading the quest of all people for decent lives in just conditions. We can exemplify the best response to the truth that "From those who have been given much, much is expected."
Much important thinking about sustainability in energy and other natural resources is already in place. You might start with the work of Amory Lovins, one of our most advanced thinkers on energy for transportation, housing and industry. Some of his premises are "saving 1 Kw of energy by conservation saves 4 Kw of energy at the power station," "businesses that cut waste are more profitable," and "business people who oppose reducing waste are not bad people; only not educated."
President Clinton invited Mr. Lovins and his Rocky Mountain Institute (RMI) staff to advise him on making the White House as energy efficient as possible. RMI can be found at www.rmi.org. Its work is showcased in "Natural Capitalism," by Paul Hawken, Amory and Hunter Lovins.
In order to share these perspectives as widely as possible, I will send similar messages to other Democratic Presidential candidates and the Democratic National Committee. I hope you might cooperate with them in arranging presentations by concerned petroleum engineers.
Thank you very much for your time and consideration, Senator Kerry. I hope you will take the courageous step of making Sustainability a key part of your campaign.
Kendall GerdesDemocratic National Committee
430 S. Capitol St., SE
Washington, DC 20003
Howard Dean for President
P.O. Box 1228
Burlington, VT 05402
Gephardt for President, Inc
P.O. Box 34607
Washington DC 20043
LIBRARY ** LIBRARY ** LIBRARY **
THE CLARION LIBRARY -- ARTICLES AVAILABLE FROM SWACHSLER@AOL.COM
Please don't request more than three articles at a time.
*ADA (Americans with Disabilities Act of 1990) Overview *Advocacy Skills: How to Get What You Need *Anesthesia and CFIDS/MCS *Carpet and furniture resources (incomplete) *CDC Diagnostic Criteria for CFIDS as of 1999 *CFS books and cookbooks *CFIDS and MCS: What's the Connection? *CFIDS Fact Sheet (basic overview of cfs and cfs resources) *CFIDS: Incidence & Physical Findings (Lecture by Dr. Cheney 2/99) *CFIDS Resources for PWCs in England *Computer Access For Individuals With MCS *Consensus Definition of MCS (1999) *Continuing Disability Review (When SSA Reviews Your Benefits) * Corporate Manipulation of Scientific Evidence Linking Chemical Exposures to Human Disease: A Case in Point -- Cigarette Science at Johns Hopkins *'Code of Behavior for Patients' (Humor!) *The Disability News Service, Inc. *Fabric Softener Facts *Fibromyalgia Resources (Expanded - w/more on-line resources) *Fibromyalgia Chat Transcript of MCS Speaker and Q & A on MCS *Flame Retardants (Dangers of flame retardants in electronic equipment) *Flea and Tick Solutions *Health Risks of 20 Common Chemicals in 31 Fragrance Products *Heavy-Duty Cleaning/Deodorizing Tips *Home Hunting Tips For People With MCS *How to Live With Others (when you have chronic pain/illness) *How to Lobby *Info & Resources for newly sick or recently (or not yet) diagnosed *Info on GreenClips (articles on green architecture) *Info on EPD (Enzyme Potentiated Desensitization, a treatment) *Introduction To MCS-Accessible Home Building and Design *Lodgings for MCS Travelers *Making Yourself MCS-Accessible (Info to educate friends, family, co-workers) *Massachusetts Resources for People w/CFIDS, MCS, and/or FMS *MCS-Accessible Travel Lodging Design (& "ADA &MCS-Accessible Travel Loading Design")*MCS -- A Brief Overview
*MCS Basic Fact Sheet
*MCS Books ***Your Recommendations!****
*MCS FAQ (frequently asked questions) by ILRU
*MCS Resources (National MCS Organizations)
*MCS Product Info (Good Mail-Order Resources)
*MCS on T.V. and Video
*Media and Government Contacts
*Mold - health alert; mold in new housing
*A New Disease Mechanism? (good, basic article on MCS)
*"No Perfume Means Healthier Air" & "Making Sense of Scents" *Nat'l Org'zat'n on Disability Frequently Asked Disability Questions *National & International Disability Rights Organizations *Natural Gas - A Dangerous Sensitizer and Cause of Injury *Overlapping Disorders: CFS, FMS, MCS, and GWS *On-Line Resources for CFIDS, MCS & related conditions + AOL CFIDS/FMS Chats *Online sources for support, resources, etc. *New! Updated!* *Paints, sealants, adhesives, etc., that are MCS safer *Pesticide Info Resources *Plants that Clean the Air *Reasonable Accommodations *Recogntion of MCS (Gov't, Nat'l & Int'l orgs that recognize MCS) *Responding to Fragrance Assaults: Activist Menu *Rus' Disability Resource List (cross-disability resources; long) *Safer sex information and products for people with MCS *Sick School Syndrome, MCS, & Children's Environments *Speakerphone Etiquette: Making Your Meetings Truly Telephone Accessible *Sunblocks (MCS-Safer) *Suicide Prevention Hotlines by State (U.S.) and Samaritans On-Line Support *SSA Info (Getting SSI/SSDI w/ CFIDS/MCS) *SSA Ruling of 4/99 regarding CFIDS as medically determinable impairment *"So You Know a Dyke with CFS. . . " *Travel article & tips for travelers w/disabilities (esp. MCS & CFS) *Why Are We Asking You Not to Wear Scents to this Event? (general education about what to do to attend an MCS-safer event)
For any of the above articles, contact SWachsler@aol.com.
For a copy of the article "How to Provide Safer Space for People with MCS/EI" contact UUdre@aol.com. (This is an excellent guide for use by churches, schools and other institutions, conference planners, etc.)
**Information from my library, as well as any questions I might research, is free.** However, if you find the information useful, please make a donation to the Environmental Health Coalition of Western Massachusetts as a way to pass on the help you receive. Nobody who cannot afford a donation will be denied resources. However, for those who can spare it, any amount is appreciated! :-) EHCWM provides life-saving info, support, and advocacy to people with MCS in Western MA. We really need your support! Thank you very much. :-) Make checks payable to "EHCWM" and mail to: EHCWM, P.O. Box 187, Northampton, MA 01061-0187.
REMEMBER: Documents from the MCS/CFIDS "Library" are provided as a service by SWachsler and MCS Chat Group for informational or entertainment purposes only. No document is intended to take the place of medical, legal, or other professional advice. You are urged to always check references and do your own research on any product, company, treatment, or service mentioned therein. The opinions contained in a document are those of the author(s) and do not represent the opinions of SWachsler, RDFont, or the MCS Chat Group.
Hello Clarion Readers,
* * * * *
Computer Boxes Available
Marilyn Jerding, the mother of a deceased MCS patient, has a monitor box, a CPU box, and window fitting for 2 ducts. She is in the Washington DC area and asks only that the recipient pay for packing and shipping. (These are big, heavy boxes.) There is also an additional CPU box available through her daughter-in-law, in Tennessee. Same conditions apply. Both CPU boxes are the same.
The Monitor Box is 24" wide by 24.5" tall by 24.5" deep. Three sides are stainless stell and the front has thick glass that slides open from the top. The glass is very heavy and is not intended to be pulled up and down frequent. There is a small opening in the back, at the bottom, for cords and wiring to come through. There is also avent in back with a fan to exhaust fumes through foil ducting.
The CPU box sits upright, and has a thick glass door that is hinged on the right side front opening. The door opens to deal with a CPU component. All areas but the door are stainless steel. The back has a vent hole with fan to exhaust chemical fumes through, and foil ducting (would have to be bought separately) would attach to that area. The CPU box is 24.5" tall by 10.25" wide by 24" deep. The glas door size is smaller, which leaves the bottom metal piece 7" tall with 2 front holes for wires/air. The glass door size is 18" tall and 10" wide. The metal frame under the door would total about 1/2" wide on each side, opening width to fit equipment through would be about 9" wide.
The Window Fitting for 2 Ducts is metal with two holes to duct air to the outside. It fits in a sash window that inside measurements are 31" long. Piece is 9" tall and about 8" deep for the duct fittings. Depth is not an issue since tehse fittings face inside the house and hook to ducking material you are using to vent the chemicals to the outside.
If you are seriously interested in any of these pieces of equipment, please contact Marilyn Jerding at firstname.lastname@example.org or call (703) 644-1976 or our e-mail. Note: You MUST put "Computer Boxes" or something similar in the subject line or Marilyn will delete your e-mail, thinking it is spam.
FYI, I got one of these monitor boxes and, even though it was shipped in
extremely smelly packing material, the box itself doesn't smell at all. I am
using it for a TV/VCR box and, aside from the muffling of sound, it's working
* * * * *
Reading Box Available
Peggy Wolff has a reading box made by Tad Taylor she would like to sell. It is made of glass and wood. Contact Peggy at Hphpwolff@aol.com.
* * * * *
MCS Advocacy Fund
Please add my site to your site: http://www.mcsadvocacyfund.org
I have some great projects happening and soon there will be an extensive MCS
registry and acute hospitalization protocol reference section. I am setting
it up comparably to MedicAlert - only for MCS. I will provide info on how
others can set this up in their geographical areas, so I hope you will add me
to your resource list. I developed this as an individual, but it is a
federally condoned non-profit organization. Thanks. contact me at: email@example.com
* * * * *
Advocacy Alert: What's Happening with Medicaid in Your State?
I actually did a lot of research on this issue for my May humor column. Please keep on top of this issue -- and keep calling your state reps, senators, and governors to let them know that poor people and people with disabilities need our health care services!
You can learn some of what's happening -- and what I've gone through to get onto Medicaid in Massachusetts -- by reading my May humor column: "Battling for Health Care, Part 1: CommonHell, a Prescription for Frustration."
This month's column follows me through the wacky twists and turns of seven-month long effort to get on the state health plan. It also poses the question, which takes longer to get approved: Medicaid coverage for a woman who is automatically qualified based on her disability or $100 billion for a President to fight a war?
To read the March column, click Here: Ability Maine: Homepage or, go to http://www.abilitymaine.org
Previous essays are archived at Sharon's Page at http://www.abilitymaine.org/Sharon.html.
For more information on what the states are doing in relation to Medicaid, visit the sites below:
AAPD (the American Association for People with Disabilities) has an action alert and details about cuts in every state at www.aapd.com/docs/2003medicaidcuts.html.
Families USA, a nonprofit health care consumer organization, is providing information and activism on this issue: http://fusa.convio.net.
Justice for All, a disability activist organization, is also spreading the word about how Bush's proposed changes to Medicaid would affect people with disabilities: www.jfanow.org
Or contact your local independent living center, or type "states cut optional medicaid" into a search engine. Please speak up today!
* * * * *
Articles Available from Swachsler@aol.com
Current library offerings:
Please don't request more than three articles at a time.
*ADA (Americans with Disabilities Act of 1990) Overview
For any of the above articles, contact SWachsler@aol.com.
For a copy of the article "How to Provide Safer Space for People with MCS/EI" contact UUdre@aol.com. (This is an excellent guide for use by churches, schools and other institutions, conference planners, etc.)
Information from my library, as well as any questions I might research, is always FREE. I do request, however, that those who use this library make a donation to the Environmental Health Coalition of Western Massachusetts as a way to pass on the help you receive. For those who can spare it, any amount is appreciated! :-) EHCWM is a nonprofit, all-volunteer organization providing life-saving info, support, and advocacy to people with MCS in Western Mass. We really need your support! Thank you very much. :-) Make checks payable to "EHCWM" and mail to: EHCWM, P.O. Box 187, Northampton, MA 01061-0187.
REMEMBER: Documents from the MCS/CFIDS "Library" and resources in the Clarion are provided as a service by SWachsler for informational or entertainment purposes only. No document is intended to take the place of medical, legal, or other professional advice. You are urged to always check references and do your own research on any product, company, treatment, or service mentioned therein. The opinions contained in a document are those of the author(s) and do not neccessarily represent the opinions of SWachsler or The Clarion.
The FOLLOWING ARTICLES ARE NO LONGER AVAILABLE FROM MY LIBRARY. THEY HAVE BEEN UPDATED, EXPANDED, AND COMPILED INTO ONE BOOKLET. TO ORDER, PLEASE SEE INFO BELOW:
*****NO LONGER AVAILABLE**********NO LONGER AVAILABLE*****
*Environmentally Safer Alternatives to Air Freshener
*****NO LONGER AVAILABLE**********NO LONGER AVAILABLE*****
Environmentally Safer Living
Articles in the "Environmentally Safer Living" article series are no longer available through this library. Deborah has updated the articles and compiled them into a booklet.
Deborah Mayaan, Environmentally Safer Living (Tucson, AZ: Three Points Press, April 2000). 72 pages, soy ink, coil bound.
to purchase, send:
Make checks payable to Three Points Press
for more information, see:
* * * * *
Before getting to the resources, news, and activism opportunties, I have an announcement to make:
I'm excited to tell you that my new Web site, sharonwachsler.com, is finished
and ready for visitors! Lisa Gray, my web designer (Grayswebdesign.com) --
who also has CFIDS and MCS -- and I have been working on this site for
months. I think you will see that hard work in evidence. Lisa has done a
Sharonwachsler.com provides information on what I do and how people can access my work. It is divided into sections about my writing and humor, my online writing courses, my dog training work, and the disability & MCS access education I do. Most excitingly, my new online writing course, Dancing with the Muse, will be taught from the site!
And, if you've ever wondered what I (or my dogs) look like, it also has photographs!
To learn about the online writing class I'm teaching, check out the Dancing
with the Muse section.
This class is open to everyone; however I think it is especially relevant to people with chronic illness. So often we have a great deal to say -- truths to speak that we feel need to be heard -- yet we are unable to go to traditional writing classes or events. This online course, taught by a person with chronic illness, is designed to support the needs of people who have varying levels of energy and attention who may not be able to access "live" writing groups.
Please help me spread the word about my Web site, sharonwachsler.com and especially my class to your friends, family, colleagues, and other writers and sickies you know. I am hoping to get the class filled by the beginning of April. The course will begin the week of April 7th.
For peace and health,
SPRING 2003 CLARION
****RESOURCES & CLASSIFIEDS****RESOURCES & CLASSIFIEDS*****RESOURCES & CLASSIFIEDS****
Apply SOON: Grants for computers for people with disabilities!
Below is information about grant money to purchase computer equipment for persons with disabilities and persons who are homebound. Please share this information with families, consumers, and anyone you think may be interested.
The Beaumont Foundation will be giving out almost $400 million in computer equipment starting in 2003. Persons with disabilities and those who are homebound because of disability or illness are especially encouraged to apply for these individual grants. Information on individual grants is also online, but persons interested in those grants should apply by calling 1-866-505-2677.
Grant applications are accepted up to March 31, 2003.
Information including a fact sheet, eligibility info, a timeline, etc. can be found at: http://www.bmtfoundation.com/grants
Here is info from the Web site:
In addition to grants for schools and community organizations, the Beaumont Foundation offers grants for individuals who need computers. Persons with disabilities and those who are homebound because of disability or illness are especially encouraged to apply for the individual grants.
The Beaumont Foundation will be giving out almost $400 million in computer equipment starting in 2003. The grant applications for schools and community organizations will be available on our website beginning January 6, 2003, at www.bmtfoundation.com/grants/. The guidelines explain how we'll be giving out $20 million each in computer equipment to community organizations and to schools in about half the country.
Information on individual grants is also online but persons interested in those grants should apply by calling 1-866-505-2667. Please note that persons with disabilities and those who are homebound because of disability or illness are especially encouraged to apply for these individual grants. Questions about the school and community grants can also be answered on that line. Our focus is on delivering equipment where it will directly benefit underserved citizens. So we do not provide computers for staff.
Since we only give hardware, we make grants to established programs that have the funding, infrastructure and staffing to maintain their programs. Part of my job is to encourage truly innovative and excellent programs for persons with disabilities. If you know of such a program that could use $20-200k of brand new, state-of-the-art hardware to help underserved communities, please drop me a line or give me a call. I am on the team working on California, Washington, Montana, Wyoming, Hawaii, and Alaska, but I will also be advising on grants for disability organizations and schools that serve students with disabilities. I look forward to receiving many, many grant applications from the disability community.
Dating Personal Ads for MCSrs at Chemically Sensitive Living!
Great Idea from Larry Plumlee about How to Keep Your Neighborhood Less-Pesticided!
It's the time of year in Washington when ChemLawn and other yard maintenance companies are calling everyone looking for customers. I try to beat them at this game by giving my neighbors each year a 1 page flyer about the dangers of lawn pesticides, and safe alternatives. This year I developed a page from http://www.safe2use.com/ipm/lawn.htm, made 70 copies, and put them in the doorways or mailboxes of all the homes near mine. I distribute these in the late morning when most people are away at work, as I want to cover as many homes as possible. The few stay-at-home mothers I encounter have always been very supportive.
I have been doing this for over a decade. Each year I distribute something different, perhaps a flyer from the Rachel Carson Council, Beyond Pesticides, the Northwest Coalition for Alternatives to Pesticides, or the American Cancer Society Buffalo, NY chapter. For this expenditure of less than $5 and one hour, I have reaped excellent dividends. I live in an inner suburb where rising home values have forced both married partners to work in most cases. They are motivated to contract for yard work. Yet most of the neighborhood lawns reflect diverse grasses which testify that they are not using herbicides. I can leave my windows open safely, and don't have to tape them to avoid "herbicide terrorism." There are a very few who are using herbicide despite the increasing trend to hire out the mowing. Other neighborhoods of comparable economic wealth in this area have a much higher proportion of sprayed lawns than mine. So I believe that my leafleting has worked, and continues working as long as I deliver my annual flyer to counter the aggressive marketing of lawn pesticides.
• MCS-Safer House for Sale!
MCSer Seeking Housing
Request For Research Participants
• Music CD Available from Singer/Songwriter with MCS/CFIDS Susan Abod
Fragrance Brochure Now Available!
***Web Sites of Interest******Web Sites of Interest******Web Sites of Interest******Web Sites of Interest***
Matthew with Coalition Against Toxins has an MCS/EI web site at
MCS Guide at AbilityMaine -- links to lots of MCS-related Web sites, at
CFIDS Guide at AbilityMaine -- links to lots of CFIDS-related Web sites, at
Stephen McFadden has put together a website on controlling West Nile Virus
without pesticides. Contains many active links to other sites:
Web site petition to ask President Bush to declare May as National MCS
Awareness and Education month.
****NEWS & ARTICLES*******NEWS & ARTICLES*******NEWS & ARTICLES*******NEWS & ARTICLES*****
NEWS of Interest + Some Scientific/Journal Articles
NEWS HIGHLIGHT: U.S. Access Board Takes on Indoor Air Quality (IAQ) Project!
From: Dave Yanchulis
Board to Undertake Project on Indoor Air Quality
In developing and updating its guidelines, the Board has received numerous comments from individuals with an acute sensitivity to various chemicals in the environment, known as multiple chemical sensitivities, and to electromagnetic sensitivities. They report that chemicals released from products and materials used in the construction, renovation, and maintenance of buildings, as well as electromagnetic fields and inadequate ventilation, are barriers that deny them access to buildings. Many of these comments identify indoor air quality as a primary concern in causing a range of debilitating physical reactions, some even life-threatening.
In response to these concerns, the Board will undertake research on methods for improving indoor air quality that will build upon its history of working with model code and standard setting organizations. The aim of the project is to bring together various stakeholders in a collaborative process to examine possible actions that can be taken to improve the accessibility of indoor environments. Those the Board seeks to involve in this project include architects and designers, manufacturers of building products and materials, building owners and operators, model code and standard setting organizations, environmental and health professionals, government agencies, organizations representing people with multiple chemical or electromagnetic sensitivities, and others. The project is scheduled to begin later this spring. . . .
"Access Currents" is a free newsletter issued by the Access Board every other month by mail and e-mail. Send questions or comments to firstname.lastname@example.org or call (800) 872-2253 ext. 0026 (voice) or (800) 993-2822 (TTY). Mailing address: 1331 F Street, N.W., Suite 1000; Washington, D.C. 20004-1111.
Also from Washington Post:
Title: Multiple Chemical Sensitivity - An Elevation of Enzyme Induction
Author(s): C. E. Mellish BA BSc D PHIL
Abstract: The hypothesis was advanced in previous papers that the symptoms of multiple chemical sensitivity (MCS) are due to the presence of thresholds, or increases in thresholds, in detoxication processes, so that these are not activated by low exposures to xenobiotic chemicals. Here the argument is taken further forward, to propose that thresholds for the induction of the enzymes which mediate the biotransformation of xenobiotics, and the elevation of those thresholds above normal levels, are the basic parameters giving rise to the symptoms of MCS. Some theoretical and experimental evidence is quoted to support the existence of these thresholds, and examples are given of how many of the characteristics of MCS can be expected to follow from the application of these ideas, which do not conflict with orthodox toxicology. "
Los Angeles Times, front page story
"Ordinary household products such as cleansers, cosmetics and paints are now the Los Angeles region's second-leading source of air pollution, after auto tailpipe emissions, air quality officials say.
Regulators have long known that smog-forming chemicals escape with every squirt of antiperspirant, each bubble of detergent and every spritz of aerosol hair spray. And they have been controlling some products' emissions for years, with mixed success. But new research shows that products common in kitchens, bathrooms and garages contribute more to Southern California's smog problem than previously thought."
Multiple Chemical Sensitivity - The End of Controversy Source: wsu.edu email@example.com, phone: 509-335-1246 http://www.mapcruzin.com/news/rtk030903a.htm
"Multiple chemical sensitivity (MCS), where people report being exquisitely sensitive to a wide range of organic chemicals, is almost always described as being "controversial." The main source of this supposed controversy is that there has been no plausible physiological mechanism for MCS and consequently, it was difficult to interpret the puzzling reported features of this condition. As discussed below, this is no longer true and consequently the main source of such controversy has been laid to rest. There still are important issues such as how it should be diagnosed and treated and these may also be allayed by further studies of the mechanism discussed below. "
"Natural farming fills foods with disease-fighting factors. That's the finding from a study comparing organic foods with foods from sustainable and conventional farms.
Food scientist Alyson E. Mitchell, PhD, and colleagues at the University of California, Davis, study compounds called flavonoids. Recent evidence suggests that these micronutrients play important roles in preventing cancer and heart disease."
Wednesday, February 12, 2003 - The Halifax Daily News - Making pests of
ourselves - Big multinationals target trouble-making, anti-spray Halifax
"SCOTTS CO., a major pesticide interest based in Ohio, recently had two representatives in town to talk to councillors. They may be the first visitors of many. Pesticide companies - and their friends on council - are mighty unhappy about the upcoming April 1 no-pesticide deadline.
The company's concern is best expressed by its director of training, development and regulatory affairs, Bill Hoopes, who is also the immediate past-president of the Professional Lawn Care Association of America. Speaking at a forum in Nashville in November, Hoopes urged contractors, associations and industry leaders to fight pesticide legislation in Canada.
"The perception is that Canada is Europe," i.e., too far away to affect the U.S., Hoopes said, quoted by Lawn & Landscape magazine. In fact, what happens in Canada could greatly affect pesticide use in the U.S., he said. "Canada can be a bell cow."..."
"It's not about money," says Jill Fairbrother representing the Scott company. "It's about the regulatory framework." (Source: CBC Nova Scotia, Pesticide maker urges city council to drop ban, February 7, 2003)
"Three years ago, Halifax regional council voted to ban pesticides entirely
starting April 1, 2003, as a way of helping people who get sick when
neighbours spray their lawns.
"Evidence of direct harm from pesticides has not been proven, argued Jill
Fairbrother, representing Scotts Canada Ltd., a producer of lawn and garden
products including pesticides. Ms. Fairbrother said Canada has some of the
most stringent pesticide testing standards in the world and the country
employs 300 scientists who evaluate their safety before they are put on the
"Benefits of pest control to our health and home environments are real" "Pest control products are strictly regulated (new PCP Act)". Jill Fairbrothers, Scotts Fertilizer (Source: City of Guelph Pesticide Committee Report December 2002)
"CCSPA members welcome the objectives of ensuring that consumer and environmental protection are fully served. But it seems that the legislators and regulators have forgotten that a major determinant of human and environmental health is economic well-being. Too many public and private sector resources are being expended to placate ill-in-formed public perception, with no evidence of concomitant benefits. For the consumer specialty products sector, this has been particularly evident where municipalities introduce by-laws to prevent home owners from using registered and regulated lawn, garden and household products on their own property. Unfortunately it is popular sentiment, not evidence, that drives much regulatory action - without any clear assessment of need or benefit." (Source: The CCSPA Formulator, Page 9, February 2002)
("The Canadian Consumer Specialty Products Association (CCSPA) is a trade association representing the consumer, industrial and institutional specialty products industry. We promote the interests of member companies by providing a national voice, encouraging ethical practices, negotiating with governments, and fostering industry cooperation.")
Betty Bridges writes about nitro-musk chemicals: "These materials are common in scented products of all types including perfumes, laundry products, cleaners, etc. This is not the first study that suggest fragrance chemicals have carcinogenic activity. Synthetic musk compounds (though not necessarily these two) are found in almost every scented product."
Evaluation of carcinogenic potential of two nitro-musk derivatives, musk xylene and musk tibetene in a host-mediated in vivo/in vitro assay system. Apostolidis S, Chandra T, Demirhan I, Cinatl J, Doerr HW, Chandra A. Department of Molecular Biology (ZBC), Frankfurt University Medical School, 60590 Frankfurt, Germany.
"We have developed a host-mediated assay system for detection of the transforming activity of chemical carcinogens on peritoneal macrophages. Directly, as well as indirectly acting carcinogenic substances, administered intraperitoneally to NMRI mice, could be examined in this way. . . . The experimental data reported here lead to the conclusion that musk xylene, as well as musk tibetene, have carcinogenic activity. In contrast to the negative results for mutagenicity and genotoxicity, a non-genotoxic mechanism for the carcinogenicity of musk xylene and musk tibetene must be considered. PMID: 12529978 [PubMed - in process]
Betty also sends several other articles of interest.
Bitsch N, Dudas C, Korner W, Failing K, Biselli S, Rimkus G, Brunn H.
Abstract: The widespread use of synthetic musk fragrances and the resultant presence of these substances and their metabolites in the aquatic environment (as well as their accumulation in human adipose tissue) raises the question of whether musk fragrances display endocrine and in particular estrogenic activity. . . . "
Heinz H. Schmeiser, Richard Gminski, Volker Mersch-Sundermann. Evaluation of
health risks caused by musk ketone Int. J. Hyg. Environ. Health 203, 293-299
Abstract: Among the nitro musks, musk ketone (MK) as a synthetic compound with a typical musk odor is widely used in cosmetics. In the European Community the total amount used in fragrances has been reported to be 110 tons/a. . . . As a result of its inherently low biodegradability MK has been detected in the aquatic environment (surface water, sediments, edible fish). . . . However, MK was identified as a strong inducer of phase I enzymes in rodents and a cogenotoxicant in vitro in human derived cells in rather low doses, suggesting that exposure to MK might increase the susceptibility to health hazards caused by carcinogens in humans."
from Gulf War Vets Home Page
- articles on Gulf War Illness and Its Causes, compiled by Garth L. Nicolson,
Nicolson GL. Gulf War Illnesses—their causes and treatment. Armed Forces
Med. Dev. 2001; 2:41-44.
Nicolson GL, Nasralla M, Haier J, Nicolson NL. Gulf War Illnesses: Role of
chemical, radiological and biological exposures. In: War and Health,
H.Tapanainen, ed., Zed Press, Helinsiki, 2001; 431-446.
Nicolson, G.L. and Nicolson, N.L. Chronic Fatigue Illness and Operation Desert Storm. J. Occup. Environ. Med. 1996; 38:14-16. http://www.immed.org/publications/gulf_war_illness/JOEM.html
Nicolson, G.L., Hyman, E., Korényi-Both, A., Lopez, D.A, Nicolson, N.L., Rea,
W., Urnovitz, H. Progress on Persian Gulf War Illnesses: reality and
hypotheses. Intern. J. Occup. Med. Tox. 1995; 4:365-370.
Ismail K, Everitt B, Blatchley N, et al. Is there a Gulf War syndrome? Lancet 1999; 353:179-182.
Nicolson GL, Berns P, Nasralla M, Haier J, Nicolson NL, Nass M. Gulf War
Illnesses: chemical, radiological and biological exposures resulting in
chronic fatiguing illnesses can be identified and treated. J. Chronic Fatigue
Syndr. 2002; 10:in press.
Nicolson GL. Written testimony to the Subcommittee on Benefits, Committee on
Veterans’ Affaris, U. S. House of Representatives, July 16, 1998.
Nicolson GL. Written testimony to the Special Oversight Board for Department
of Defense Investigations on Gulf War Chemical and Biological Incidents, U.
S. Senate, November 19, 1998.
Nicolson GL, Nasralla M, Franco AR, et al. . Mycoplasmal infections in
fatigue illnesses: Chronic Fatigue and Fibromyalgia Syndromes, Gulf War
Illness and Rheumatoid Arthritis. J. Chronic Fatigue Syndr. 2000;
Nicolson GL, Nicolson NL. Gulf War Illnesses: complex medical, scientific
and political paradox. Med. Confl. Surviv. 1998; 14:74-83.
Nicolson GL, Nasralla M, Haier J, et al. Mycoplasmal infections in chronic
illnesses: Fibromyalgia and Chronic Fatigue Syndromes, Gulf War Illness,
HIV-AIDS and Rheumatoid Arthritis. Med. Sentinel 1999; 4:172-176.
Nicolson, G.L. and Nicolson, N.L. Diagnosis and treatment of mycoplasmal
infections in Gulf War Illness-CFIDS patients. Intern. J. Occup. Med.
Immunol. Tox. 1996; 5:69-78.
Nicolson, G.L., Nicolson, N.L. and Nasralla, M. Mycoplasmal infections and
Chronic Fatigue Illness (Gulf War Illness) associated with deployment to
Operation Desert Storm. Intern. J. Med. 1997; 1:80-92.
Nicolson GL, Nasralla M, Nicolson NL. The pathogenesis and treatment of
mycoplasmal infections. Antimicrob. Infect. Dis. Newsl. 1999; 17:81-88.
Nicolson GL, Nasralla M, Franco AR, et al. Diagnosis and integrative
treatment of intracellular bacterial infections in Chronic Fatigue and
Fibromyalgia Syndromes, Gulf War Illness, Rheumatoid Arthritis and other
chronic illnesses. Clin. Pract. Alt. Med. 2000; 1:92-102.
Nasralla M, Haier J, Nicolson GL. Multiple mycoplasmal infections detected in
blood of Chronic Fatigue and Fibromyalgia Syndrome patients. Eur. J.Clin.
Microbiol. Infect. Dis. 1999; 18:859-865.
Nicolson GL, Nasralla M, Haier J, Pomfret J. High frequency of systemic
mycoplasmal infections in Gulf War veterans and civilians with Amytrophic
Lateral Sclerosis (ALS). J. Clin. Neurosci. 2002; in press.
Nicolson GL, Nicolson NL. Doxycycline treatment and Desert Storm. JAMA
Nicolson GL. Mycoplasmal infections--Diagnosis and treatment of Gulf War
Syndrome/CFIDS. CFIDS Chronicle 1996; 9(3): 66-69.
Nicolson GL. Considerations when undergoing treatment for chronic infections
found in Chronic Fatigue Syndrome, Fibromyalgia Syndrome and Gulf War
Illnesses. (Part 1). Antibiotics Recommended when indicated for treatment of
Gulf War Illness/CFIDS/FMS (Part 2). Intern. J. Med. 1998; 1:115-117,
Goss Gilroy Inc. Health Study of Canadian Forces Personnel Involved in the
1991 Conflict in the Persian Gulf Volume I. Prepared for Gulf War Illness
Advisory Committee. Ottawa: Department of National Defense. April 20, 1998.
Nicolson GL, Nass M, Nicolson NL. Anthrax vaccine: controversy over safety
and efficacy. Antimicrob. Infect. Dis. Newsl. 2000; 18(1):1-6.
Nicolson GL, Nass M, Nicolson NL. The anthrax vaccine controversy. Questions
about its efficacy, safety and strategy. Med. Sentinel 2000; 5:97-101.
Thornton D. A survey of mycoplasma detection in vaccines. Vaccine 1986; 4:237-240.
Nass M. Anthrax vaccine linked to Gulf War Syndrome. Report to the Institute
of Molecular Medicine, October 2, 2001.
*****ACTIVISM OPPORTUNITIES*******ACTIVISM OPPORTUNITIES********ACTIVISM OPPORTUNITIES****
TAKE ACTION! TWO IMPORTANT ACTIVISM OPPORTUNITIES:
1) KEEP ORGANICS PURE!
An article on great reasons to eat organic, and a link to a site to save the recently passed organic food standards that have since been corrupted by a legislative rider.
"The Attack of the Killer Tomato"
by Peter Bahouth
Last January, while sitting in a restaurant in Chicago, I ordered a salad. The salad came with a tomato on it. I found myself wondering, "Where did this tomato come from?" So I tracked it. . . ."
After more than a decade of consideration and hundreds of thousands of public comments, the USDA implemented strong federal organic standards.
Now, just a few months after the standards went into effect, Congressman Nathan Deal (R-GA) attached a last-minute rider to the omnibus appropriations bill that was signed into law February 20th. The rider allows poultry and livestock producers to use non-organic feed, but still label their products as organic. Senators Patrick Leahy (D-VT) and Olympia Snowe (R-ME) and Congressman Sam Farr (D-CA) have introduced legislation to rescind this insi dious rider.
You may send a letter to your senators and represetative and learn more about
this issue by visiting our action center at:
Dear Member of Congress,
I am writing today to urge you to stand up for organic labeling standards and cosponsor the Organic Restoration Act.
During final consideration of the 2003 Omnibus Appropriations Act, ten lines of text were inserted into the 3,000-page bill that subverts the will of American consumers and the intent of Congress in establishing clear and meaningful standards for organic products. The new language allows poultry and livestock raised on conventional feed to be labeled as organic if it is determined that organic feed costs more than twice the price of conventional feed. Under the USDA standard for organic labeling--issued just four months ago after more than a decade of public comment and debate--only food animals raised on 100% organic feed can bear the organic label.
American consumers and organic farmers deserve the higher standard. At a time when many small and medium-sized farmers are struggling to survive, organic farming has grown 20% per year over the past decade. Farmers who make the extra effort to produce organic foods are rewarded by customers willing to pay a premium for products that support sustainable farming methods.
In addition, the USDA organic labeling standards give shoppers an effective tool to make informed buying decisions. Legislation has recently been introduced to rescind this reckless loophole. As a constituent, I ask you to cosponsor the Organic Restoration Act, introduced by Senators Patrick Leahy and Olympia Snowe and Representative Sam Farr.
A SUPER-EASY WAY TO TAKE ACTION:
Take action by April 5, 2003
FIND OUT MORE:
2) TELL YOUR REPRESENTATIVE TO VOTE *NO* ON HR 342 (the MASH Act)!
Here's the pesticide industry's take on this bill (which they, of course, support -- $$ in their pockets.)
Buzz Online: Regulatory Update
March 20, 2003
Pest Control's Buzz Online Newsletter
New legislation could aid mosquito-borne illness fight
WASHINGTON, DC — The National Pest Management Association reports that the U.S. House of Representatives has approved a measure permitting the U.S. Centers for Disease Control and Prevention to provide grants and technical assistance to states and political subdivisions to fight West Nile virus and other mosquito-borne diseases.
Specifically, The Mosquito Abatement for Safety and Health Act (The MASH Act) authorizes $100 million in fiscal year 2003 and such sums as may be necessary for fiscal years 2004 through 2007 for political subdivisions to develop and operate abatement programs and states to coordinate control programs statewide. Grants to political subdivisions are limited to $100,000 per fiscal year and only subdivisions that contribute at least $1 for every $2 of federal funding are eligible to receive grants.
From Donald Wharton:
I was just watching CSAN discuss HR342. This is a bill to fund mosquito control. As Larry has pointed out this is philosophically unsound. The primary fear is West Nile virus. As we know this is a rather mild virus in those areas of the world that have had it over years. There is a small problem primarily with the very old and very young as those that have no antibodies against it are first exposed. The evidence is that we all can expect to be exposed to the virus and the various attempts to stop that will fail.
The destruction of the mosquito population will also destroy the natural predators of the mosquitoes. There is no evidence that the net effect of mosquito control programs has any net long term effect on the prevalence of mosquitoes. Once the predators are reduced or eliminated the mosquitoes will rebound at an even higher level. The only effect is to line the profit margins of the suppliers of insecticide.
Even if we were to assume that there is some effect in reducing the spread of a virus there is no effort to include the negative effects on health of people directly from the pesticide. Some people have severe reactions to the pesticide itself. The majority that do not directly experience a drastic negative effect from the pesticide may find that their immune systems will be compromised at a later date. We have to respect the wisdom of professional biologists that understand the complexity of the ecosystem and the reactions of the human to toxic substances.
CONTACT YOUR REPRESENTATIVE AND TELL THEM YOU OPPOSE THE MASH ACT -- HR 342.
+++END OF SPRING 2003 CLARION++++
Hello Clarion Readers!
Well, it's been over a year since my last newsletter and a lot has been going on. Several new laws have been enacted, new elected officials have taken office, and media and legislators are dealing with the ramifications of these events on the environment and human health. Here in Massachusetts, as in many states, a budget crisis is having a big impact on health care issues and disability services.
This Clarion contains info on exciting new web resources on MCS and environmental health issues; news digests on hot environmental health issues; info on cross-disability resources, including a guide for setting up a disability-accessible event; and other stuff of interest to people with MCS, CFIDS, related disabilities, and our allies.
TABLE OF CONTENTS
This post contains the following topics:
• A Personal Note from the Editor
• Planning (Cross-Disability) Accessible Events: A Checklist for Pre-Event
• Handbook on How to Integrate Quality of Life into Health Care,
Education, and Social Services
A Personal Note from the Editor
For me, personally, I've been hard at work on my disability humor work. As most of you probably know, I write a monthly disability humor column for Ability Maine (http://www.AbilityMaine.org). If you are interested in running my disability humor column in your MCS, CFIDS, disability, or chronic illness publication, please drop me a line to discuss it at SickHumor2@aol.com. My current (November through Dec. 8th) column is a tongue-in-cheek guide to how to communicate with your doctor. My new, December column (which will be up on the 9th) contains a slew of my own disability light bulb jokes, including the story of my failed, yet funny, attempt to replace my own lightbulb.
I also have a business called Sick Humor Postcards -- selling cartoon postcards on life with disability (http://www.SickHumorPostcards.com). Recently, with the help of my Web site designer (who is also disabled with MCS and CFIDS) I have totally revamped my Web site so that it has a new look, is easier to navigate, and offers credit-card ordering right from the site. To encourage sales during the gift-giving season (since postcards make a low-cost present or stocking stuffer) and because I think we can all use an extra laugh, I'm offering a holiday special through December 31st: with each purchase of a multipack or set of postcards, you get a second set free.
I have written a press release about being a CFIDS/MCS/disability humorist. I have pasted it at the very bottom of this e-mail. If you are on any e-zines or lists that might be interested in the press release, please free to forward it. I can also send it as an attachment, if requested.
Peace and best wishes for the new year,
NEW MCS GUIDE AT ABILITYMAINE.ORG
AbilityMaine.org has created an MCS Guide which provides information and resources on the Web relating to MCS. The site is intended to be useful to people with MCS as well as to those who want to learn about the illness. Sections include MCS organizations, articles about living with MCS, housing, personal care products, MCS-safer building, a bibliography of books and videos, and more.
To check it out, go to http://www.abilitymaine.org/guides/mcs.html
NEW FRAGRANCE BROCHURE WILL SOON BE AVAILABLE
The non-profit organization, the Environmental Health Coalition of Western Mass., has revised its very popular fragrance brochure. The new brochure should be available after the New Year. EHCWM will soon be sending out sample brochures, as well as taking orders for bulk copies. The new pamphlet explains the hidden dangers of fragrances, provides fragrance facts, and discusses symptoms, health effects, problematic products, accessibility issues, safer products, and resources for learning more and purchasing less-toxic products. The pamphlet also includes brief "vignettes" about people whose lives have been adversely affected by fragrance chemicals. If you are interested in receiving a notice when the brochure becomes available, please e-mail me, Sharon Wachsler, at SWachsler@aol.com. Give me your name, mailing address, e-mail address, phone number, and organization's name (if any).
SEEKING PRODUCTS AND TRAINERS REGARDING PEOPLE OF COLOR AND MCS
It seems to be a perenial challenge for me to find a good selection of skin and hair care products that are MCS-safer which address specific concerns of African-American people and other people of color. If you have information on this topic, including resources, product names, or leads on how to find them, please e-mail me at SWachsler@aol.com.
Along a similar line, I am trying to help a multicultural women and children's services organization find one or more people of color who would be interested in giving a training about what it means to have MCS and how fragrances can make a person sick, regardless of their culture, wishes, or community affiliation. The organization has been trying to maintain an MCS-safer space and enforce a fragrance-free policy. Several of the staff/leadership and many of the clients are women of color. Due to having been subjected to racist attitudes about people of color "smelling bad there has been resistance, hurt, and confusion around what a fragrance-free policy means, despite the great efforts of many of the staff.
Some of the staff have approached me, and I agree, that it would be very useful to have some outside people of color come in and conduct a training about MCS and fragrance issues. Since I and my co-trainer are white, we would not be appropriate for this training.
If there is anyone who is at all interested in conducting such a training, or giving a presentation, please drop me a line at SWachsler@aol.com. If you are not in the Western Mass. area, it is still possible you could do a presentation by speakerphone, as this organization is very familiar with speakerphone access.
ENVIRO HEALTH ACTION WEB SITE
EnviroHealthAction provides education and activism opportunities for people concerned about the environment and health. It provides information and action opportunities on children and toxics, chronic illness and the environment, and other important, related issues. Its Web site is sponsored by the Physicians for Social Responsibility.
For more information, http://www.envirohealthaction.org/
MCS Workplace Accommodation Survey
From ECHO of Connecticut:
ECHO (Ecological Health Organization, Inc.) is conducting this survey because so many of you have had difficult experiences receiving what you need in order to obtain employment or remain in a job. We will be putting our findings in a brochure to share your experiences with people with MCS, advocates and employers regarding accommodations in the workplace for people with MCS.
Anyone in the past or present who have attempted to obtain workplace accommodations is encouraged to reply.
For information: ECHO Work Survey, PO Box 8232, Berlin, CT 06037 or greenplaces@ attbi.com.
PHTHALATES IN THE NEWS
A very encouraging media blitz for environmental health activists in the last few months has focused on phthalates. Phthalates are carcinogenic and hormone-disrupting chemicals that are found in many common products, including cosmetics and fragrances. Not Too Pretty (www.nottoopretty.org) has led the campaign in raising awareness -- especially among women of child-bearin gage -- about the dangers of fragrances, cosmetics, and phthalates.
One example of many recent articles on the topic is this Washington Post from November 26, by Brian Reid. A short excerpt follows. For the complete article, go to http://www.washingtonpost.com/ac2/wp-dyn/A36254-2002Nov25?language=printer
A Cosmetic Ingredient Is Linked to Animal Defects. Its Human Risks Are Less Clear
By Brian Reid
Special to The Washington Post
Tuesday, November 26, 2002; Page F1
Phthalates, chemical substances that make plastic more flexible without reducing its strength, are an all-but-inescapable part of life in the 21st century. They're used in toys, garden hoses, shower curtains and medical devices. They're also common ingredients in beauty products, making nail polish chip-resistant and making hair spray keep a bouffant in line. But a small coalition of consumer groups, led by Environmental Working Group and Health Care Without Harm, has cried foul, claiming the chemicals' risk to millions of cosmetic-wearing women has been underestimated. Over the past months, citing animals studies that have linked the additives (pronounced THAY-lates) to birth defects, including liver and kidney damage and malformation of the testes, the anti-phthalates groups have run ads in The Washington Post and the New York Times warning of toxic chemicals lurking in perfumes and hair mousse.
Additional information on phthalates in "beauty" products can be obtained from:
Not Too Pretty: http://www.nottoopretty.org/
THIMEROSOL -- MERCURY-LADEN VACCINES IN THE NEWS
President Bush Helps Pharmaceutical Industry Duck Legal Action of Injured Children
You may have seen a flurry of e-mails and news reports on the issue of thimerosol and mercury in vaccines for children. You may also know that protections for the vaccine manufacturer, Eli Lilly, was written into a version of the Homeland Security Act, which passed, and is now a law.This puts health advocates in the untenable position of being unable to pursue legal action, or gain important scientific information, because the Bush Administration has taken the pharmaceutical companies under its wing.
Below is a short excerpt from one article on the Thimerosol issue (before the bill was passed). For more information on this topic, simply go to www.google.org and type in "thimerosol." You will be astounded at the number of recent articles on this topic.
To read the rest of this article (below) go to http://www.RedFlagsWeekly.com
NOVEMBER 16, 2002
A "SECOND OPINION" EXTRA
HOMELAND HIJINKS AND WHITE HOUSE WHITEWASH: The Bush Administration Is Not Only Protecting The Vaccine Manufacturers But Also The FDA By Sneaking In Fine Print Into The Homeland Bill
By Nicholas Regush
...The Homeland Bill contains several peculiar wrinkles that have little to do with security. ... The White House wanted ridiculous breaks for drug companies thrown into the Bill.
... For Eli Lilly, this is a happy time because the Bill, if passed, would allow special protection against any lawsuits claiming that Thimerosal, the mercury preservative for vaccines, causes neurodevelopment problems, including autism.
The industry does not do relevant research on vaccines and continues, with help from its CDC, FDA and doctor friends, to heap one vaccine after another on children without doing ... appropriate safety and efficacy research. ....
Almost 50 per cent organic mercury by weight .... FDA documents indicate that the concerns about Thimerosal rose sharply once the data from the vaccine manufacturers began to be analyzed in 1999. ... It quickly became evident that many millions of children ... might have been receiving overdoses of mercury from vaccines and that many might have been poisoned. Especially at issue were three vaccines from among those on the recommended schedule for children under six months of age. Three doses of DTaP (the newest type of vaccine for diphtheria-tetanus-pertussis) amounted to 75 micrograms of mercury. The same was true for three doses of the Haemophilus influenzae type b vaccine, given to protect against a range of bacterial infections, including meningitis. And three doses of the hepatitis B vaccine yielded 37.5 micrograms. The total of 187.5 micrograms of mercury over six months greatly exceeded the safe limit set by the Environmental Protection Agency (EPA) of 0.1 micrograms per kilo of body weight per day.
For a child following the standard vaccination schedule, shots at two months of age would yield 62.5 micrograms of mercury. ... that could result in more than 30 times the EPA’s recommended daily maximum exposure.
To date, there have been no published studies whatsoever, that have specifically examined the exposure of infants to ethyl mercury and its health effects.
ONE MORE TIDBIT ON THIMEROSOL
To read another fascinating article on this topic, check out the New York Times article excerpted below:
New York Times
November 29, 2002
A Capitol Hill Mystery: Who Aided Drug Maker?
By SHERYL GAY STOLBERG
WASHINGTON, Nov. 28 — Lobbyists for Eli Lilly & Company, the pharmaceutical giant, did not have much luck when they made the rounds on Capitol Hill earlier this year, seeking protection from lawsuits over a preservative in vaccines. Senator Bill Frist, Republican of Tennessee, tucked a provision into a bill that went nowhere. When lawmakers rebuffed a request to slip language into domestic security legislation, a Lilly spokesman said, the company gave up.
Now, in a Washington whodunit worthy of Agatha Christie, the provision has been resurrected and become law, as part of the domestic security legislation signed on Monday by President Bush. Yet in a city where politicians have perfected the art of claiming credit for deeds large and small, not a single member of Congress — or the Bush administration — will admit to being the author of the Lilly rider. ... >>
PLANNING ACCESSIBLE EVENTS: A CHECKLIST FOR PRE-EVENT PREPARATION
Massachusetts Assistive Technology Partnership Center (MATP) created a fabulous disability access checklist for event planning. This handout is a must-have for organizations who want to begin to become accessible to people with disabilities, as well as for specific disability organizations that need to learn how to be accessible to people with other disabilities. You can reach MATP at the contact info below.
Massachusetts Assistive Technology Partnership Center
THE DANGERS OF MERCURY IN FISH; THE FDA WITHOLDS INFORMATION
If you think you already know which fish are "safe" and which are not, this article may come as an unpleasant surprise.
Excerpt from "Why the FDA is Not Telling You to Avoid Fish"
.... Newly available, internal FDA documents obtained by the Environmental Working Group (EWG) reveal that FDA, under pressure from the seafood industry, is deliberately withholding critical information from pregnant women on mercury-contaminated tuna and other fish, and using "focus group" sessions as a justification.
In May of 2001, FDA's Director of the Division of Risk Assessment, Michael Bolger, told the press that the agency had conducted focus groups and concluded that if women were given a more comprehensive list of fish that should be avoided or eaten only in moderation during pregnancy, they would simply not eat fish at all. To investigate this claim, the Environmental Working Group (EWG) obtained and analyzed 1,036 pages of focus group transcripts under the Freedom of Information Act.
We found that the word-for-word account of focus group discussions flatly contradicts Bolger's assertion. We also found compelling evidence that the agency is failing to protect the public from mercury-contaminated seafood. Internal FDA focus group transcripts considered together with publicly available FDA documents, show that the agency is failing to regulate mercury levels in seafood, has shut down its mercury monitoring program, has not issued an enforceable limit for mercury in fish, and has not implemented the mercury education program that it promised.
Environmental Working Group
To read the rest of the article, go to the EWG Web site.
DR. MERCOLA'S COMMENT:
How could the FDA allow the seafood industry to inform the public about problems with its primary product? Don't trust the Gorton's fisherman! Most companies are not altruistic and will not serve the public's interests above their own. Those in the seafood industry are no exception; they will not inform the public about mercury in their fish.
Some fish have less mercury then others, but nearly all fish are contaminated with mercury. I have done thousands of hair mineral analyses on patients and can confidently state this as truth. Patients who don't eat any fish are the only ones who have immeasurable levels of mercury in their hair. In my experience, anyone eating fish has mercury, and it is nearly always in direct proportion to the frequency of their fish consumption.
So here is my recommendation:
AVOID EATING ALL FISH
Fish has mercury that will absolutely compromise your health.
We all need the omega-3 fats found in fish, but you should get them from a clean source. Most of the fish oil supplements go through a molecular distillation process to clean out the mercury, but you should definitely contact the manufacturer directly to confirm this.
Finally, I commend the Environmental Working Group for their fine work in evaluating the FDA transcripts and bringing this to public attention. They have done a great public service.
Mercury In Your Fish
INTERNATIONAL MCS ARTISTS NETWORK
For more information, e-mail firstname.lastname@example.org
From Moon McNeil, of the Artists with MCS/ international network:
The network Artists with MCS was founded by a female german painter and an author in august 2001. Both suffered from lack of information about safe material and possibilities to continue working as artists after their MCS-diagnosis. After a long and difficult phase or reorientation they found out that arts are not only perfect mediums to transport MCS-specific contents, but arts could also give a new perspective for a life so demaged as it is by an environmental illness. Arts are therapeutics in themselves. On top of that the founders soon realized that more artists with MCS seemed to have waited for such a group. By now the two founders are accompanied by a growing number of german and american painters, musicians, filmmakers, sculptors, videoartists and authors, some of them quite known.
Artists with MCS is - first of all - a medium for discussing plans and ideas; a possibility to exchange experiences with material or to solve personal or artistical problems or needs. It is a space where artists of all traditions can connect in trust of being taken serious and where help of all sorts is cared for. The network members help each other trustfully and with loving kindness to continue or find back to working as an artist in spite of the handicap, they exchange knowledge about safe odorless colours or tolerable recording units, or to learn about new techiniques that take the illnesses consequential demages into consideration. Artists with MCS sometimes have to learn to work on smaller things like poems, short stories or small film sequences instead of dreaming of big books, monster paintings and three-hour-movies. They have to learn to follow their bodies needs rather than hunting down artistical visions from the life before MCS. An MCS diagnosis may finish off with some dreams - but it may also open completely new visions and contents we can follow. Most MCS-artists have to develop new and MCS-specific ways of presenting themselves and especially for selling their artwork. All this we want to develop - for us and all those who surely will follow.
Every person who has got a diagnosis of MCS can join us, no matter if he/she is a lay-artist or a professional, as long as s/he lives poison-chemical-solvent-perfume-free, is an artist (lay or pro) and speaks german or english. We make no differences but we expect devotion to the networks ethics and respect for the members personal and artistical rights. Contamination is to be prevented under all circumstances, the health of everybody the most important value. It is understood that we are not accepting any tendency to use the contacts for matters that collide with members interests. Knowledge about safe material, possible sponsors, exhibitions etc is to be given freely to every member. It is understood and accepted that noone uses the artwork of others without personal permission of the artist. Copyrights are to be taken serious. Members who do not follow these minimum rules can be excluded without further argument or discussion. Every member can introduce ideas for joint projects, but participation is always voluntary and has to consider health conditions that vary. Several smaller projects are already in the state of development.
from Newsletter Artists with MCS -- December 2002
The most important achievements this year were some new members, a german language mcs-anthology on the brink of publication, a good and reliable co-operation-partnership with an mcs-support-group in germany, the founding of a promotion-agency and strong and reliable relationships between you and me. The network is open for everybody worldwide, as long as the common language is english or german.
Most of the writing members have taken part in the forthcoming german mcs-anthology, which is a great book. It looks great thanks to Karla Kiesenthal's wonderful painting, it contains great stories, poems, songs and cartoons and it will be a great present too. On top it gives a wide spectrum of information about mcs and the daily challenges for those who have mcs. I regard it as a neccessary contribution to everything that's done for people who have mcs. It cannot be enough - and there cannot be enough variations to tell the world what the problems of mcs-victims are, what the reasons for our problems are and how they could be diminished or solved... Reminds me of the fourfold buddhistic truth: there is the truth of suffering, this suffering has got a cause, this cause and the resulting consequences can be ended, and the fourth truth is the way by which it can be ended. Very complex in one way, but simple in another.
The MCS-Anthology contains 42 contributions of 13 authors plus a grand cover painting. The contributions split up into 15 stories, 15 poems, 5 cartoons and 5 songlyrics plus foreword and biografies.
If you want to join the network Artists with MCS please e-mail email@example.com
GET READY TO SUPPORT SNIFF! JANUARY ACTIVISM WILL BE ALL-IMPORTANT!
As you can see by reading the correspondance below, there is a lot of excitement over a very promising bill called SNIFF that would require the FDA to let consumers know, via labeling, what known allergens and toxins are in their fragrances products! Rep. Schakowsky plans to re-introduce this bill (House Bill 1947) in January. At that time, we will all need to take action to support the bill with everything we've got. In the meantime, to learn more, read the letters below.
OR, if you want to be alerted in January -- what's going on with SNIFF and what you can do to support this crucial legislation, please get on Larry Plumlee's (firstname.lastname@example.org) e-mail list.
Dated 11/9/02, email@example.com writes:
Lynn Lawson got our excellent Congresswoman Jan Schakowsky to introduce House Bill 1947 that would require the Food and Drug Administration to let consumers know, by means of label requirements, what known allergens and toxins--and there are many of them--are in fragranced products.
Hardly anyone seems to know about HB 1947. Please alert all your correspondents!
MarjorieDated 11/12/02 , firstname.lastname@example.org writes:
Below is the complete reference for this bill. Marjorie Rosenfeld
Sponsor: Rep Schakowsky, Janice D.(introduced 5/22/2001) Latest Major Action: 6/1/2001 Referred to House subcommittee. Status: Referred to the Subcommittee on Health.
Title: To amend the Federal Food, Drug, and Cosmetic Act to require that fragrances containing known toxic substances or allergens be labeled accordingly.
Jump to: Titles, Status, Committees, Related Bill Details, Amendments, Cosponsors, Summary
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COSPONSORS(2), ALPHABETICAL [followed by Cosponsors withdrawn]: Rep Berkley, Shelley - 5/22/2001 Rep Fattah, Chaka - 7/18/2001
SUMMARY AS OF:
In a message dated 11/13/02, email@example.com writes:
Soooooo, what is needed is for people to write to their own representatives returning to the House, asking that they support or co-sponsor SNIFF drafted by Rep. Jan Schakowsky. SNIFF will have to be reintroduce in 2003, so letters to current sponsors, asking that they please reintroduce and co-sponsor SNIFF could also help. You'll want to write to: representatives Schakowsky, Shelley Berkley (D NV) on May 22,2001 and by Chaka Fattah (D-PA) on July 18, 2001.
As time wears on, I predict that SNIFF will also become very important to people affected by the air pollution from the horrific events surrounding September 11, 2001. It is not too early to begin notifying your representative -- whether newly elected or returning -- that you want him/her to support and/or co-sponsor the Safe Notification and Information For Fragrances act. Then be sure to write again in support of SNIFF, after -- we hope! -- it is reintroduced in the next session of Congress.
And in the meantime, remember that the Citizens' Petition, 99P-1340 is still open, still accepting letters and documentation, is still an official vehicle for informing the FDA about your adverse reactions to synthetic scents. And using Citizens' Petition, 99P-1340, be sure to inform the FDA of adverse reactions suffered by your children or elderly parents, too. Citizens Petition, 99P-1340 is available on EHN's site at: http://www.ehnca.org/FDApetition/bkgrinfo.htm
Let's get a major write-in campaign going to the FDA about the harmful effects of the toxic chemicals found in synthetic scents. True, we found phthalates, but as bad as phthalates are, they are only the very tippy top of a gargantuan proverbial iceberg.
Dated 11/13/02, Lynnword@aol.com writes:
Dear All: Just a few more facts about H.R. 1947. It is also known as SNIFF (Safe Notification and Identification For Fragrances) -- stretches it a bit, but helps one remember it. The original bill had one co-sponsor-- Rep. Shelley Berkley (NV) and perhaps another. I have a list of the current members of the Subcommittee on Health, where it resides, but I assume it will have to be re-introduced into the next Congress, if Rep. Schakowsky is willing to do so for a third time.
For some current information, I have a call in to Jon Samuels, her legislative aide who worked on this bill. I publicized it mostly in CanaryNews, hoping that the groups I exchanged newsletters with would pick it up, but few did. Then 9/ll happened, and I didn't feel the time was right to push it. Now seems better in some ways. Lynn Lawson
Dated 11/14/02 , Lynnword@aol.com writes:
Dear All: this is what I just sent to Larry Plumlee:
As I will write to Marjorie Rosenfeld's list and as you can send on to your list or whomever you want, today I spoke with Jon Samuels, Rep. Schakowsky's legislative aide in charge of this bill (SNIFF). He said that she does plan to re-introduce the bill in January (bless her!) and that we should hold off any effort until then. At least I can now take a deep breath! Sorry to lose this little momentum, and who knows what may happen between now and then, but maybe we can light a fire in 2003. Cheers, Lynn Lawson
THE INFORMATION BELOW IS COPIED, WITH PERMISSION, FROM STEVEN BROWN'S MANIFESTO #32
The material in the MANIFESTO is written and/or produced by the Institute on Disability Culture.
Steven E. Brown, Co-Founder
This free CD-ROM, produced by the Department of Justice, contains a complete collection of the Department's ADA materials. It includes the Department's regulations, architectural design standards, and technical assistance publications. Documents on the CD-ROM are provided in a variety of formats, including HTML, WordPerfect, and text (ASCII) to enable people with disabilities and others to gain easy access, translate materials to braille, or use screen readers. Many documents are also provided in Acrobat PDF format so that they appear as they do in print and permit the publications to be reprinted by personal computers.
Order the CD-ROM via the Internet at http://www.usdoj.gov/crt/ada/adatacd1.htm or by calling the ADA Information Line at 1/800-514-0301 (voice) or 1/800-514-0383 (TTY), 24 hours every day.
NEW HANDBOOK EXPLAINS HOW TO INTEGRATE "QUALITY OF LIFE" INTO HEALTH CARE, EDUCATION, AND SOCIAL SERVICE PROGRAMS BOOK IS FIRST TO INTEGRATE INTERNATIONAL LITERATURE ON QUALITY OF LIFE MEASUREMENT AND APPLICATION
Washington, DC (November 11, 2002)-Despite its tremendous recognition and practical applications in health care, education, and social services, the concept of quality of life remains poorly understood and has eluded scientific measurement and evaluation. For the firsttime, two experts simplify this nebulous concept into eight factors that can be applied, measured, and evaluated in the following areas of human service-education; physical health; mental and behavioral health; mental retardation and intellectual disabilities; aging; and family services. The result is a quality of life model that human service professionals ca these services.
"The Handbook makes the concept of quality of life concrete and measurable for the very first time," says veteran psychologist and educator Bob L. Schalock, co-author of the Handbook. "Everyone wants a life of quality, and in that sense, the Handbook is universalin its appeal." Schalock wrote the Handbook with Dr. Miguel Angel Verdugo of the University of Salamanca in Spain. The Handbook identifies eight domains that contribute to a life of quality. These include emotional well being; interpersonal relations; material well being; personal development; physical well being; self-determination; social inclusion; and rights. The authors then identify core factors that contribute to each of these domains and suggest techniques that enhance quality of services in eight most debated areas of human service-education; physical health; mental and behavioral health; mental retardation and intellectual disabilities; aging; and families. The Handbook also proposes a new model to measure quality of life that is both practical and application oriented. The authors walk you step-by-step through measurement procedures and strategies to test quality of life standards in programs and services. Further, the book also tells you what principles, policies, and initiatives individuals, organizations, and communities at large can adopt to lead more meaningful lives. The Handbook is based on a review of 900 international articles on quality of life from 1985-2000, making it the most current and comprehensive book published to date on the subject. Order book: Call 301-604-1340 or email firstname.lastname@example.org
Review copy/author interviews: Call Anna Prabhala at 202-387-1968, Ext. 212 or email email@example.com
PUBLISHER: The American Association on Mental Retardation BOOK: Paper. 350 PAGES. ISBN 0-940898-77-2. $44.45 (MEMBER) $49.95.
Founded in 1876, the mission of AAMR is to promote progressive policies, sound research, effective practices, and universal human rights for people with intellectual disabilities.
SUPERFEST XXIII CALL FOR ENTRIES
CDT'S annual International Media Festival on Disabilities, Superfest XXIII, seeks entries of works about disability or by mediamakers with a disability. A 1/2 inch VHS-NTSC preview format is required, along with a completed and signed entry and release form. Entry fees range from $20 to $90. Winners will be screened in the SF Bay Area. To request entry forms, send a legal size SASE to: Corporation on Disabilities and Telecommunication (CDT), P.O. Box 1107, Berkeley, CA 94701; Phone: 510-845-5576; Email: Superfest@aol.com. Final entry deadline is: January 31, 2003 (post-marked). Early bird discount if mailed by Jan. 15, 2003. NOTE: Works produced since 1/1/98 are eligible. For more info. and an entry form visit: HTTP://www.madknight.com/cdt
TRANSPORTATION SERVICES FOR INDIVIDUALS WITH DISABILITIES
The US Department of Transportation has just announced a web site for individuals with disabilities to submit comments on transportation services fo r individuals with disabilities. The current Transportation for Equity Act for the 21st Century (TEA-21) is set to expire September 30, 2003 and Congress is seeking input as they develop replacement legislation. The web site is: http://www.fhwa.dot.gov/reauthorization Written comments can be sent to:
Docket Clerk, USDOT, Room PL-401,
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and now, my little bit of self promotion. . . . :-)
Contact: Sharon Wachsler at (413) 625-9820 or SickHumor2@aol.com
For Immediate Release
Making Fun of Illness
Shelburne Falls, Massachusetts -- Sharon Wachsler has built a business on the funny side of chronic illness. Wachsler runs SickHumorPostcards.com -- a catalog and Web site selling cartoon postcards about life with disability.
"When I became ill, my life became this bizarre nether world. I felt like, 'I have to draw a picture of this or nobody will believe what is happening to me,'" Wachsler explains of living with Multiple Chemical Sensitivity (MCS) and Chronic Fatigue Syndrome (CFS).
One postcard illustrates the time when Wachsler admitted to her doctor that she was too sick to walk to the bathroom. The physician's response: "Are you getting any exercise?"
"Events that are frustrating or scary at the time are frequently hilarious in hindsight," the cartoonist muses. "Some of my funniest stuff is about strangers who offer me miracle cures or the time my service dog pulled my 200-pound wheelchair on top of me."
These mishaps may end up as postcards, or as topics for Wachsler's monthly humor column at AbilityMaine.org. Whether drawing or writing, the humorist believes in breaking the taboo against discussing illness. "I think it adds to the laughter factor when you make jokes about what everyone's afraid to say. People feel relieved: 'Oh, I'm not the only one who's thinking this wacky stuff.'"
Another driving force for the writer is creating culture by, for, and about people with disabilities. In fact, Wachsler's Web designer, Lisa Gray, also lives with CFS and MCS. The two became friends via an Internet illness list. When Gray -- who has limited use of her hands -- needed to build a Web site for school , she used voice software to create SickHumorPostcards.com. That experience proved so rewarding that she launched her own business -- GraysWebDesign.com. "Sharon and I are each other's biggest fans," states Gray. "And we love what we're doing." Wachsler concurs: "Too often people with CFS and MCS are the butt of others' jokes. In this case, we are the ones making the jokes. That's very different. What could be better than giving people with chronic illness a laugh?"
Wachsler can be contacted at SickHumor2@aol.com. Sick Humor Postcards may be purchased with a credit card or online check at www.SickHumorPostcards.com. A link at the site also connects viewers to Wachsler’s disability humor column.
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