@@The Clarion, Spring 2000, Volume 2, Number 2 @@
 
 
Hello and Welcome to the Spring 2000 issue of The Clarion, the newsletter of information, resources, and activism for people with MCS (multiple chemical sensitivity), CFIDS, (chronic fatigue immune dysfunction), related disorders, and our allies.

This issue I am featuring some exciting activism advances and opportunities, including the new E-Z Act-ivist section. Following that are activism opportunities relating to CFIDS funds, MCS awareness, anti-pesticide organizing, cross-disability rights (such as keeping the ADA strong), and more.

If you would like to receive our e-mail version of The Clarion, you can subscribe by sending an e-mail to me at SWachsler@aol.com and requesting to subscribe to The Clarion.

Let's ring in an early spring with some kickin' activism!

-Sharon Wachsler

Editor, The Clarion

INDEX:

Featured Activism

Resources Person-to-Person News EZ-Act-ivism Activism Opportunities

***FEATURED ACTIVISM!***FEATURED ACTIVISM!***FEATURED ACTIVISM!

Feature #1: FDA PETITION MAKES IMPACT!

From: Betty Bridges (bcb56@ix.netcom.com)

Date: 2/12/2000

For almost a year now I have drummed up support for the petition to the FDA to have Eternity (by Calvin Klein) declared misbranded because it contained substances that had not been adequately safety tested.

The perfume was analyzed by a lab that specializes in analysis of fragrances. The available health and safety data was found for the substances in the product. Most did not have adequate health and

safety data, the ingredient at the highest level did not have any available data. Some of the materials had known and potential health hazards and were listed as suspected carcinogens, respiratory and skin sensitizers, neurotoxics, etc.

 While safety testing of cosmetics (which includes perfumes) is not required, a warning label is required for all products that have not substantiated the safety of both the ingredients and the final product. Though fragranced products contain many chemicals that have not been adequately safety tested, the warning label is not present on the label.

 A petition was filed with the FDA to have Eternity (by Calvin Klein) declared misbranded or mislabeled because it did not carry the required warning label. The FDA responded to the petition and said no decision had been made and comments are still being accepted.

 Today I was surfing the FDA site as I do periodically. I found a page on their goals and priorities for the year 2000. I really could not believe my eyes and I am SOOOOOO excited. In their goals for 2000 is the following:

 **Cosmetics Enforcement and Surveillance: Develop strategy for issuance of 740.10 warnings for products formulated with ingredients that lack adequate safety.**

This is a direct result of the petition. I want to thank everyone that has written, passed the word along, or otherwise supported this effort. I also want to urge everyone to please send in comments if you haven't, continue to pass the info along, and support this effort. The more sent in the more attention will be paid to this at the FDA. Over 700 comments/signatures were sent in between May and November. I would love for that number to be over 1000.

Some visible progress has given me renewed energy and focus on this. I hope everyone realizes what we have accomplished. With minimal funds, networking and efforts of people that have never met physically, and no professional help this petition has affected FDA priorities. Without those that wrote in in support of the petition, there would have been no impact. I can not thank everyone enough. And I urge you to continue to work on this issue and make others aware at every opportunity. We can make a difference.

Please pass this thanks and update along to others. Information on supporting the petition can be found at the sites in my signature line. Comments are accepted from those outside the US as well, so let's make this an international effort.

A heartfelt thanks to all.
Betty Bridges, RN
Fragranced Products Information Network (FPIN)
For information on health effects of fragrances, visit:
http://www.ameliaww.com/fpin/fpin.htm
 
 

SUPPORT THE PETITION TO THE FDA

Docket # 99P-1340

Send comments to: mailto:fdadockets@oc.fda.gov

(Make sure to include your full name and mailing address -- comments without them are ignored).

For more information visit:

http://users.lanminds.com/~wilworks/FDApetition/bkgrinfo.htm

http://www.ameliaww.com/fpin/petition%20index.htm

P.S If you haven't yet sent in your comment supporting the petition, please do it today! It only takes a minute! For those that have sent in your comments, remember that this issue goes far beyond those with MCS and sensitivity fragrances.
 

1. It is a general health issue as air quality affects everyone.

2. It is a consumer issue as consumers have a right to know the status of safety testing of the products they use AND consumer labeling laws should be enforced.

3. It is an environmental issue as fragrance chemicals are contaminating waterways and aquatic wildlife (fragrance chemicals are in the food chain). And they have now been found in ambient outdoor air.

4. Fragrances directly impact ANYONE with respiratory problems (both upper and lower)
 

 I would very much like to see this expand beyond the MCS and chemical sensitivity community. It is a general health concern just as second hand smoke is only more widespread. Please encourage your non-MCS family, friends, coworkers, religious community, health food store, local government, and health providers to send in their support of the petition as well.

***************************************************************

Feature #2: SEND COMMENTS TO U.S. ACCESS BOARD BEFORE MARCH 15th!

This is SUCH an IMPORTANT ISSUE. Please read the discussion below and then send in YOUR COMMENTS! This is our chance to get our foot in the door of public access. Many pioneering MCSrs, like Susan Molloy, have worked on this for years. Let's keep up the pressure and build the numbers!

-SW

From: susanm@cybertrails.com (Susan Molloy)

Date: 2/20/2000

U.S. Access Board to Revamp the A.D.A.

By Anne Jackson

Spokespersons with chemical and electrical sensitivities dominated the morning session of the Architectural and Transportation Barriers Compliance Board (Access Board) meeting in Los Angeles on January 31. A number of organization representatives and individuals gave emphatic testimony, repeatedly urging the Board to include their concerns when regulating access for people with disabilities.

Susan Molloy, of Snowflake, AZ, "fired the shot," opening public comments on behalf of the National Coalition for the Chemically Injured. Stillreeling from fragrance and elevator exposures, she gave an impassioned speech which brought tears to the eyes of some in the audience. The Reverend David Gilmartin, also of Snowflake, testified for the Environmental Health Network. He eloquently enumerated the many ways that those with immune and neurological diseases are ignored under current regulations.

Sandra Ross, Ph.D., submitted a statement from the Health Council of Marin County, CA, which was read aloud into the hearing record by Anne Jackson. Dr. Ross emphasized the prevalence of Multiple Chemical Sensitivity in numerous studies in the United States. Testimony by Micki Davi, of Conifer, CO, was read by Julia Hoover. Ms. Davi gave numerous specific suggestions which could be used to make buildings accessible for affected groups.

Speakers for the Epilepsy Society, based in San Diego, testified regarding the seizures that can be induced by sound and light alarms installed in buildings, leaving people stranded alone and unconscious, immobilized in buildings that might have been burning.

Sheera Bleckman and Benjamin Tash Sclove, of Boulder, CO, gave informed testimony based upon their research for an upcoming film about the misuse of toxics. Barbara Wilkie, of Berkeley, CA, and Editor of the New Reactor newsletter, read her testimony by telephone. Julia Hoover of Los Angeles testified about toxic fragrance in her former office, which has rendered her unable to resume her professional career, even though she is well unless exposed to perfumes.

Anne Jackson, Director of the Environmental Health Association, based in Los Angeles, CA, urged everyone in the room to educate others about the dangers of pesticides and fragrances. She cited researcher Kaye H. Kilburn, M.D., author of Chemical Brain Injury, which warns that we are risking widespread brain damage in the future if we ignore this problem.

The Access Board sets accessibility standards for several federal agencies, including Housing and Urban Development, the General Services Administration, Department of Defense, and U.S. Postal Service. This hearing, the first of two, was part of the public comment process concerning several dozen proposed modifications to the application and regulation of the Americans with Disabilities Act.

The second, and final, hearing is scheduled for March 13 in Arlington, Virginia. To sign up, phone 1-800-USA-ABLE. The location is the Sheraton Crystal City Hotel, 1800 Jefferson Davis Highway, from 9:30 A.M.--5:00 P.M.

Scheduled speakers include Larry Plumlee, M.D. for the National Coalition

for the Chemically Injured; Mary Lamielle, Director of the National Center for Environmental Health Strategies; and Betty Bridges, R.N., of the Fragranced Products Information Network, who will focus on synthetic fragrances as they impede access of people with chemical sensitivities and other respiratory, immune and neurological conditions.

The Access Board is the entity which has determined your level of access to doctors’ offices, post offices, hospitals, trains and buses, workplaces, shops, apartments, hotels, restaurants, counseling centers and parks. If there’s something you want the Board to consider as they work on the revision of the Americans with Disabilities Act and Architectural Barriers Act (the "ADAAG"), make your needs and observations known before the cut-off date of March 15, to:

Architectural and Transportation Barriers Compliance Board 1331 F Street, NW, Suite 1000, Washington, DC 20004-1111

Call: (202) 272-5434(v) or 5449 (TTY)

E-mail: docket@access-board.gov

Toll-free: 1800-USA-ABLE

FAX: (202) 272-5447

* * *

There are several of us giving comments on March 13. Now what we need from YOU, is to fax, email, or snail-mail in your comments supporting changes to the ADAAG that increase access for people with MCS. Your comments must be received by March 15!

The guidelines on which public comment are being accepted until March 15 can be found at:

http://www.access-board.gov/ada-aba/guidenprm.htm

Information on what to comment on follows.

From Susan:

Topics on which to touch, related to the purvue and responsibilities of the Access Board, include anything that's attached to the facility/building.

In other words, the Access Board has nothing to say about whether a person comes into your office, classroom, etc. wearing perfume. The Access Board CAN govern placement (or not) of fragrance emission devices (the "FEDS") in the restroom, and whether a pesticide squirter can be mounted over the door at the entryway of, for example, a fast food restaurant or a market to kill flies. The Access Board can govern the heating, ventilation, air conditioning and the openable windows, in that they are part of the architecture. The Access Board cannot make suggestions regarding throw rugs, but the Access Board already creates rules regarding carpet - it has to be firmly affixed to the floor, with tufts which are dense and short so wheelchairs can roll over them and so we don't all trip. The Access Board can have something to say regarding flooring products and adhesives, and attaching carpet to the floor using carpet tacking strips or velcro instead of the smothering adhesives. Where are ashtrays placed? If they are set on top of a piece of furniture or a bar, it's not the Access Board's problem. If the ashtrays are attached to the building with welding or screws or in any other way permanently part of the structure, the ashtray issue becomes fair game. Lighting is covered: how bright, whether it can flash/flicker and trigger epilepsy, it's placement on the ceiling and walls. The "paths of travel" referred to in the regulatory liturature include the walkway from a close-by bus stop or parking lot through the grounds, through the entryway, through the hall, into the restroom, onto the elevator or escalator; it includes the public phone booth or desk and it includes the water fountains, and then according to federal law, a person with a disability has the right to enter a room for work, services, surgery, therapy, to pick up their child or parent from daycare, etc. without encountering barriers on the way in, or on the way back to the car or the bus stop. That's what "path of travel" means. Housing is also included in the Access Board's proposed regulations this cycle. We will until March 15, to send in to Access Board and Congress what are the details of each issue.


From Betty Bridges (bcb56@ix.netcom.com):

I have been asked to speak at the Access Board meeting in Washington in March.

If they cover ventilation that is perhaps a workable angle. Certainly ventilation translates into air exchnage?

The path of travel is another area that might can be utilized. If fragrance was kept out of the path of travel, it would be much less of a problem. (OF COURSE the only way to do that is to keep it out of the building:-)


From Barb Wilkie:

About the board and fragrances: They've loved to do the analogy of turning the building upside down and shaking it and everything that doesn't come out, falls under their purview. Well, if that is the case, AIR DOES NOT FALL OUT no matter how they shake that building. Fragrances -- worn, used in cleaning/maintenance products and most certainly from attached dispensers -- should become their concern. Especially since EHN has proof of the toxic chemicals in those products and the fact that the fragrance industry knows ZIP about the harm those chemicals alone -- or in combination -- can cause.

Lastly, folks can click into info about the Access Board from EHN's homepage, should they lose the URL given below. EHN

http://users.lanminds.com/~wilworks/ehnindex.htm


From mmlytle@netscape.net

To All EI Leaders Across The Nation re Access Board:

As a national strategy, let us unite and ask the US Access Board for the same ONE thing (see my letter below: that any public restroom which bears the accessible logo should be required to be accessible to persons with MCS and related environmental disabilities.

If, across the nation, we approach the Board with the SAME simple, focused request, our chance of success is much greater! The reasonableness of this request can easily be seen, and it would limit building owner liability. It would establish an important precedent which we could build upon later. It would send out a powerful message!

One thing I've learned about the politics of policy-making: give them one clear thing to focus on, instead of 10 or 20. Let's give them a request they can't refuse!

Please contact your sphere of influence. Ask them to contact the Board with this ONE request. Thank you for considering this important action.

I welcome your feedback. Sincerely, Mary-Margaret Lytle, mmlytle@netscape.net,

[ please read letter below ]

--------------------------------------------------------
 
February 21, 2000

Dear Access Board: 

I wish to submit my comments regarding the proposed new ADAAG during the public comment period which expires March 15, 2000.

My comments relate to Public Restrooms. I may also submit comments on other ADAAG topics via separate emails.

QUALIFYING BACKGROUND
My background includes professional training and experience in real estate, property management, and as an interior design specialist with a focus on creating access for persons with multiple chemical sensitivity (MCS) and related environmental disabilities. I, too, am a person with MCS.

Currently I serve the City of Houston's Mayor's Office for People with Disabilities as an Administrative Assistant who works integrally with the Mayor's Commission on Disabilities.  For over two years, I have dialogued with City officials regarding how to create access in the workplace for persons with MCS.

RECOMMENDATIONS:      ACCESSIBLE PUBLIC RESTROOMS

Any public restroom which bears the "handicap" logo, indicating the facility includes accessibility features for persons with disabilities, should be required to OMIT any fragrance-dispensing devices attached to the structure, whether permanently or temporarily, so barriers will not exist which block access to the facility by persons disabled by chemical sensitivities and related environmental disabilities.

In addition, the contents of all soaps dispensers which are attached to the structure, whether temporarily or permanently, should conform to standards set forth by entities with proven track records in compiling inventories of such acceptable products, such as the Environmental Health Center in Dallas, Texas or the Northwest Center For Environmental Medicine in Bellevue, Washington, to name just two.

Finally, such restroom(s) should be maintained by the janitorial staff in conformance with standards set forth by such entities as those suggested above.

In summary, accessible public restooms which bear the "handicap" logo should not only be wheelchair accessible but also accessible to persons with chemical sensitivities
and related environmental disabilities.

Thank you for receiving my comments.  Please feel free to contact me if you have any questions at my office at 713-526-3698. 

Sincerely, 
Mary-Margaret Lytle
mmlytle@netscape.net

From Sharon Waschler:
 

My SAMPLE LETTER is below. Please tailor your letter to reflect YOUR experiences and concerns. In writing your comments, try to:
1) Address at least a couple specific architectural barriers, such as the fragrance- or pesticide-emitting devices installed over doors in restrooms or restaurants.

2) Use your own experiences, at work or in public, to make your point.
 

I also advocate: a) focus -- or at least include -- specific comments on ACCESSIBLE RESTROOMS. Give examples of restroom problems you've had and give SPECIFIC, CONCRETE suggestions on how restrooms should be made accessible to MCSrs.

b) requesting the ATBCB to reconsider the way they define what is under their purview. (i.e., the discussion above as to whether air is part of a building), and

c) requesting the ATBCB to hire a member specifically charged with representing the access needs of people with MCS, since we have not had our concerns included in the ADAAG rules thus far.
 

**Make sure to INCLUDE IN YOUR COMMENTS (no matter how you send them) your U.S. MAIL ADDRESS, the date, and your FULL NAME, otherwise your comments will be ignored.**
*****My SAMPLE LETTER*****

MY ADDRESS
The DATE
 

Architectural and Transportation Barriers Compliance Board
1331 F Street, NW, Suite 1000
Washington, DC 20004-1111

Members of the Access Board,
I am a thirty-year old woman, multiply disabled since 1995. Since the onset of my disabilities I have been thwarted in my attempts to go to the drug store, doctor's office, movie theater, or restaurant. Even worse, if I am in public or on the road, I am unable to use public restrooms. This means restricting fluids and "holding it" for hours at a time until I can get home. Due largely to barriers to access, I am almost completely homebound. Indeed, I can count on the fingers of one hand the times I have been able to attend a public event since 1995. I use a mobility scooter, oxygen, and an assistance dog. I do run into access barriers such as steps, narrow aisles, and other such problems relating to my assistive technology. But the overwhelming barrier to access which keeps me imprisoned in my home is that of environmental access. One of my disabilities is multiple chemical sensitivity (MCS). 

I know that before now the ATBCB has not officially recognized the barriers to Americans with MCS (as well as to people of short stature) in every day society, but I beg you to please reverse this course and include our rights along with the rights of Americans who have other disabilities. Please understand our very real concerns. 

There are many barriers that are easily addressed in your guidelines that could have a profound impact on the daily lives of people with MCS and other as-yet-unrecognized disabilities. Remember also that many Americans with respiratory disease, epilepsy, and other illnesses also have their freedom limited by scents and toxic air in public venues.

Please take the following steps today:

1) Implement the comments provided by Americans with MCS that clearly fall under your purview -- architectural modifications and construction affecting access. (See below for examples.)

2) Broaden the definition of "architectural access" to include access for ALL Americans with disabilities; include air quality issues and use of toxics in public space as part of access regulations.

3) Require all public restrooms that are marked as accessible to be FULLY ACCESSIBLE, including MCS-accessible.

4) Charge one ATBCB board member with representing the concerns of Americans with MCS. This should be a new ATBCB board member hired specifically for this purpose.

Specifically, incorporate these changes to the proposed new regulations:

First, all public restrooms which bear the "handicap" logo or are otherwise intended to be accessible must be FULLY accessible, meaning they are accessible to people of short stature, people with MCS, people who are blind, etc. Making a bathroom MCS-accessible requires that:

1) There be no fragrance-emitting devices installed or loose in the restroom facility. This means no "air freshener" devices or other similar devices that emit fragranced chemicals. 
2) Soap dispensers must not dispense fragranced, toxic chemicals, but instead dispense a nontoxic, fragrance-free soap that will not aggravate symptoms in people who are chemically sensitive, have epilepsy, or respiratory illness.
3) Cleaning of the bathroom be done with nontoxic cleaners. There are many industrial-strength cleaners on the market today that are safe for people with MCS or respiratory illness to be around.
4) Bathrooms must be No Smoking areas, and be so designated with signs.

Next, and most obviously, ventilation systems are part of every public building. Prohibit "sealed buildings," i.e., buildings which do not have windows that open and which rely on recirculating indoor air. Require at least two easily opened windows in every room. Require that HVAC systems include air filtration for dangerous molds, bacterias, and chemical fumes, such as a HEPA/ULPA and carbon filter.

Under "Accessible paths of travel" in "primary function areas": Prohibit use of herbicides or pesticides next to or in paths of travel and in primary function areas. Prohibit installation of synthetic carpet which has not outgassed for at least six months. Prohibit toxic adhesive for holding carpet in place. Prohibit affixed ashtrays in all public spaces, unless they are in an enclosed space specifically designated ofr smokers, with air that is not circulated to non-smoking areas.

"Employee work areas" should allow for an accessible workstation for a person with MCS. This could be one small room with window, air filter, doors that close, and not situated near photocopy areas, smoking areas, or other toxic air hazards.

"Hospitals, Rehabilitation Facilities, and Long Term Care Facilities" should provide, included under the 10% accessible rule, inpatient and residential quarters that are accessible to people with MCS. Every health facility must be required to have one room for patients with MCS. Without this measure we are toying with the lives and deaths of many Americans with MCS. The current choice for most is to go to the hospital and risk serious injury/exacerbation of their illness, or to stay home and risk serious illness or injury from not receiving medical care. MCS-accessible hospital rooms would require a window that opens, air filtration, and separation from other patients and staff.

"Accessible seating in public facilities" must prohibit smoking, and provide at least a small toxic-free section away from the toxic-product wearing general public.

In every effort towards equal rights there must be individuals who take a stand in the face of obvious injustices — whether or not these injustices personally affect them — and make the moral decision to throw in their lot with those who are being wronged. I hope the ATBCB is such a group of individuals.

Sincerely,

Sharon Wachsler
 


***RESOURCES**RESOURCES**RESOURCES**RESOURCES**RESOURCES***

Update from Last Issue: Jacki's MCS Web Site has Moved

From: jacki@ourlittleplace.com

Date: 2/22/2000

My web site on MCS has now been moved to: http://www.ourlittleplace.com/mcs.html

The site includes:

I also have been given some graphics of "awareness buttons" that you can print out and make into signs or buttons to help spread the word! They're at:

http://www.ourlittleplace.com/buttons.html

E-mail: jacki@ourlittleplace.com

Home Page: http://www.ourlittleplace.com/

Multiple Chemical Sensitivity, Chronic Fatigue Syndrome, Fibromyalgia, the health risks of perFUME, fabric softeners, & air fresheners, etc.

Love,
Jacki

**********

New MCS/CFIDS/FMS Newsletter

From: moehopper@yahoo.com (Sandy)

Date: 1/7/2000

An MCS support group in Northeast Ohio joined with NAPH - National Association for Physically Handicapped. The group received a grant to develop a newsletter that would help people with CFIDS, FM, MCS. The first one is hot off the press!!

"We are publishing a unique newsletter for persons with chemical sensitivities with an emphasis on fun, humor, editorials, etc. If you wish to receive a free first issue, send us a mailing address. We would love to send you one!" Barb Eaton: President, National Association of the Physically Handicapped, Chemical Sensitivity Awareness chapter of Northeast Ohio.

If you are interested in this first edition, send an email to Barb at: beaton@raex.com .

*******

Assistive Tech Program Helps Make Computers Accessible

Date: 1/13/2000

From: susanm@cybertrails.com (Susan Molloy)

EMF Computer Shielding!

The Arizona Technology Access Program (AzTAP) at N. Arizona U. in Flagstaff has put on their website some pages, with photos, of how we're shielding our computers for electromagnetic field emissions. Maybe you can use some of the ideas? The computer I use is the "Montana Project" (named after my dog) and it is the one sponsored by Arizona Rehab Services Administration (same as Department of Rehabilitation in other states). I'd suggest printing it out now while it's posted - it's meant to stay up, but it's hard to feel entirely secure about such efforts. AzTAP also has a good MCS page posted. Each state has a Technology Access Program like this and maybe we can encourage them to take more leadership? AzTAP's page for computer shielding is: http://www.nau.edu/~ihd/aztap

**********

Call for PA material / new homepage on Independent Living

Date: Jan 8, 2000

From: k.walmsley@swipnet.se

X-From: ratzka@independentliving.org (Adolf Ratzka)

Reply to: k.walmsley@swipnet.se (Kris Walmsley)

Dear friend or colleague,

The Institute on Independent Living, under funding from the European Union, maintains a full-text online library with documents on all aspects of Independent Living. One of our areas of particular interest is Personal Assistance.

We try to make our selection of texts on personal assistance as extensive and complete as possible. We collect and publish articles, manuals, research reports and personal accounts about legal, funding and organizational aspects, training and support issues as well as the interpersonal dimensions of the user-assistant relationship.

If you or your organization have produced materials of no commercial value or know of relevant resources elsewhere, we can help in making them available to a large public through our website which presently receives close to 500 visitors a day from all over the world. With full credits and links to authors and copyright owners, of course. Please, contact our webmaster Kris Walmsley, at k.walmsley@swipnet.se. You too can empower personal assistance users.

Through the year we've received a number of comments - both critical and complimentary - about our website. When possible, we try to accommodate requests or implement suggestions. As we head into a new year we're happy to present a new look for the website of the Institute on Independent Living. Webmaster Kris has done a fine job.

The homepage offers now a clear and comprehensive overview of the site's contents. Latest additions to the Library are headlined, as are world-wide events (calls for papers, conferences, etc.). Especially exciting is the addition of a regular columnist. We begin this feature with Karen Stone, who takes the pulse of the disability community, and notes the best and worst influences affecting people with disabilities in the 1900's.

The Library now contains over a thousand pages of relevant materials on independent living, personal assistance, universal design, legislation, advocacy, and many other related topics. We're in the process of providing descriptive annotations for each article, report, or commentary.

Our free on-line services continue to grow. Aside from new subject headings in our Discussion Forums, you'll also notice that the Accessible Vacation Home Exchange contains now 100 objects, and that we updated the Assistant Referral Exchange with its list of persons seeking work as personal assistants and those looking for assistants.

We changed the name of DisOrgNet (Disabilities Organizing Network) to Global Networking to better reflect the purpose of this service: to facilitate networking among organizations both of and for persons with disabilities in their search for partner organizations for joint projects; events; sharing resource persons for lectures; training or technical assistance; for study visits, internships or other cooperation, including funding.

Finally, we'd like to remind you to subscribe to our Newsletter, either by adding your email address in the form on our homepage or by sending a mail to: il-request@lists.canit.se with "subscribe" in the body of your email message.

We look forward to your visit and hope to continue hearing from you.

All the best in 2000.

Cordially yours,

Adolf Ratzka

ratzka@independentliving.org

Director, Institute on Independent Living

http://www.independentliving.org

Important references:

Full-text Library

http://www.independentliving.org/Library/Library_Contents.html

Accessible Vacation Home Exchange

http://www.independentliving.org/VacationHomeSwap.html

Assistant Referral Service

http://www.independentliving.org/assex/index.html

Global Networking

http://www.independentliving.org/donet/index.html

Discussion Forums

http://www.independentliving.org/cgi-bin/cgiwrap/indliv/forum/bbs_entrance.cgi

*********

Beyond Pesticides Solving A Public Health Crisis

The Eighteenth National Pesticide Forum

The Lighthouse Conference Center, New York City, New York

April 7-9, 2000

Please visit our website for a complete copy of the preliminary conference brochure and registration form. http://www.beyondpesticides.org convened by Beyond Pesticides/National Coalition Against the Misuse of Pesticides

CALL TO THE CONFERENCE

The Eighteenth National Pesticide Forum convenes in New York City as the region and areas in the eastern United States face a second year of massive aerial and ground pesticide spraying for mosquitoes. The spraying raises serious questions about pesticide hazards, pest management, and disease vector surveillance in the region and nationally. In the New York region, public health officials have identified an insect-borne disease, West Nile Virus, transmitted to people through biting mosquitoes. The public health threat of the virus as well as the danger associated with public exposure to pesticides must be addressed. During the pesticide spraying for mosquito control last Fall, public officials repeatedly referred to the pesticides used, organophosphates and synthetic pyrethroids, as "safe." Similar safety claims regarding pesticide use are issued throughout the country by industry representatives and public officials. But, in fact, pesticides are registered by the Environmental Protection Agency with acknowledged risks and hazards. Scientific studies and medical practitioners raise health and environmental concerns.

The Forum provides an opportunity to hold a balanced regional and national discussion on the major pest management and pesticide use issues that confront the public today. It is being sponsored by a broad range of local, state and national organizations that believe public involvement is key to sound decisions in this arena. The conference will provide a forum to discuss the facts relating to pesticide hazards and risks and the options for effective alternative strategies that do not rely on dangerous chemicals.

The Forum will focus on preventive pest management strategies and new ways of thinking about managing areas that are routinely treated with pesticides, such as homes, schools, offices, gardens, parks, golf courses, and food production. As the conventional chemical and food industry push the frontiers of science to promote genetically engineered food crops (plant pesticides), questions regarding their public and environmental health impact will be discussed.

The conference provides a forum for planning positive action. It is spurred by an increasing inability of decision makers to identify causes of the high rates of cancer, childhood asthma and other respiratory problems, neurological diseases, blood disorders, and endocrine and immune system dysfunction effects that are tied to pesticides through laboratory or epidemiological studies. Positive action seeks to put in place strategies that embrace the precautionary principle of avoiding use of hazardous chemicals.

Please join us at the Forum to share information, discuss local, state and national efforts and plan strategies for change in New York City on April 7-9, 2000.

KEYNOTE SPEAKER

Barry Commoner - Leading the conference with his insight on the relationship between environmental problems and political issues is internationally known scientist, Barry Commoner. Dr. Commoner, the founder of the Center for the Biology of Natural Systems now located at Queens College, is the author of The Closing Circle, and Making Peace with the Planet. His current research includes the occurrence of carcinogens in the environment, and methods of reorganizing agriculture to foster the production of food and fuel and protect the environment.

KEYNOTES, PANELS & WORKSHOPS

Topics covered will include: mosquito management; pesticide alternatives; risk management: political science or physical science, toxicology 101: health effects of pesticides; pesticides in schools; farmworkers on the frontline; golf course management; working with the media; organizing for a common cause; genetic engineering of our food supply/ biotechnology; household pest management; state pesticide reporting law; national organic standards; municipal pesticide phaseouts; national and state pesticide legislation.

SHOW YOUR SUPPORT: GET A PROGRAM LISTING

Get your message out to community, environmental and public health leaders across the country and show your support for the grassroots pesticide movement by advertising in the conference program. The deadline is March 10, 2000. Call Beyond Pesticides/NCAMP (202-543-5450) for details.

For more info: Beyond Pesticides/NCAMP, 701 E Street, SE, Washington, DC 20003.

REGISTRATION FEES

Member (indiv/non-profit/corporate): $65/$65/$175

Non-member (indiv/non-profit/corporate)*: $90/$115/$225

(* This amount includes a membership in Beyond Pesticides/NCAMP)

Student rate (with valid ID): $35

*****************

African Americans with Disabilities Internet Discussion Group

Date 2/11/2000

From: Justice For All (jfa@jfanow.org)

Greg Smith, greg@onarollradio.com, writes:

African Americans with Disabilities Internet Discussion Group Formed by Radio Talk Show Host

Yellow Springs, OH -- In observance of African American History Awareness Month, a syndicated radio talk show host has established a new e-mail discussion group targeted to African Americans with disabilities. "The objective of this group is to give African Americans with disabilities an electronic forum to discuss unique issues we face," says Greg Smith, host of On A Roll - Talk Radio on Life & Disability. His weekly radio program airs on 15 radio stations across the country and the Internet live. Smith has muscular dystrophy and is of African American descent.

"I'm very excited about the quality of the dialogue that is taking place on the list. Being both African American and disabled is a lot to have in common, and we're probing into what we have all experienced but never had a forum to discuss openly," says Smith. He hopes the list can facilitate more involvement of blacks with disabilities in the disability movement and promote an understanding of disability culture the African American community.

Smith hopes that the discussion will probe into how cultural influences may be impacting the lives of African Americans with disabilities. "I've faced discrimination as part of the 'double whammy' that comes from being both black and disabled," says Smith. "But the most painful aspect of it is discrimination in the form of 'able-ism' from within my own race."

Tracee Garner, 23, a student at Northern Virginia Community College sees the list as the start of an important interactive community. "It is an outlet and place to come together with like peers were my views are taken into account, shared and heard, thus helping me to find a place where I can identify, express and receive positive empowerment," she says. "I also think its cool that there are non-African Americans on the list who care enough to not only observe the discussion but participate in it as well." Garner has Spinal Muscular Atrophy and uses a wheelchair. Other list members are visually impaired, deaf and mobility impaired.

African Americans with disabilities are currently being recruited to sign up for the list. Subscribers have the option of receiving posts via e-mail or visiting a web site to read the entries. To subscribe to the group, send e-mail to BlackDisabled-subscribe@onelist.com. The web site for On A Roll - Talk Radio on Life & Disability is http://www.onarollradio.com. On A Roll airs live each Sunday evening from 9-11 PM Eastern Time and is simulcast on the Internet at http://www.broadcast.com/shows/onaroll.

PLEASE DISTRIBUTE WIDELY TO AFRICAN AMERICAN MEDIA OUTLETS, CHURCHES, NONPROFIT GROUPS

Contact: Greg Smith

http://www.onarollradio.com

Ph: 937-767-1838

Fx: 703-991-7567

E-mail: greg@onarollradio.com

*************

Date: 2/22/2000

From: jfa@metrocil.mwcil.org (Justice For All), jfa@jfanow.org

Public Forums on TWWIIA Act of 1999 +

FACT SHEET ON ODISP PUBLIC EDUCATION FORUMS

FORUM TITLE: Federal Policy - State Opportunities: Models and Strategies for an Inclusive Workforce

The 1999 report of the Presidential Task Force on the Employment of Adults with Disabilities recommends that SSA plan and host a series of public awareness meetings for constituents and customers of the public disability programs. These forums would focus on Federal and State employment-related policies and programs for people with disabilities. The following outlines SSA's preliminary plans for a series of forums and the topics areas that would be covered in the meetings.

The forums will provide information, and an opportunity for discussion, on the following topics: SSA customer service and work incentive initiatives; State health care systems and models; employment initiatives of the Departments of Education, Labor, and Health and Human Services; and, an update on the work of the Presidential Task Force on Employment of Adults with Disabilities. The forums will also provide for a discussion of the Administration's plans for implementation of the Ticket to Work and Work Incentives Improvement Act of 1999, as well as information on new models of State and local systems working together to serve their common customers with disabilities.

SSA's FEDERAL PARTNERS

COMMUNITY COLLABORATION For more information contact Georgia Thrower at (410) 965-3987, Special Assistant to the Deputy Commissioner for the Office of Disability and Income Security Programs. Public Education Forums
 
Region States Host City Date
Region VII KS, NE, IA, MO  Kansas City, MO February 2
Region IV AL, FL, GA, KY, MS, NC, SC, TN  Durham, NC March 9
Region IX AZ, CA, HA, NV, Guam, Siapan, American Samoa  Phoenix, AZ March 30
Region II NY, NJ, Puerto Rico, Virgin Islands  New York, NY April 6
Region VI AR, LA, NM, OK, TX  Austin, TX  To be determined
Region X AK, ID, OR, WA  Seattle, WA June 13
Region I VT, CT, ME, MA, NH, RI  To be determined To be determined
Region III  DE, DC, MD, PA, WV, VA  Philadelphia, PA To be determined
Region V IL, IN, MI, MN, OH, WI  Chicago, IL To be determined
Region VIII CO, MT, ND, SD, UT, WY Denver, CO To be determined

For more information contact:

Ogle Becky

ogle-becky@dol.gov

Georgia Thrower

410-965-3987

*********************

WEB SITES OF INTEREST

http://www.wemedia.com/

disability full service web site -- especially useful for people newly disabled who are looking for info on where to go, what to do, how to -- legal info, obtaining services, resources, etc.

* * *

Band-Aides & Blackboards: When Chronic Illness. . . or Some Other Medical Problem. . . Goes to School

http://funrsc.fairfield.edu/~jfleitas/contents.html

Website on "Chronic Illness, Children, and Health Education" featuring art and writing by kids with chronic illness. Here is an excerpt:

"Welcome! This is a site about growing up with medical problems. . . any old type. Its goal is to help people understand what it's like, from the perspective of the children and teens who are doing just that. These kids have become experts at coping with problems that most of you have never heard of. They'd like you to know how they do it, and they hope that you'll be glad you came to visit. I've divided the contents into three ponds; one for kids, one for teens, and one for adults. Figure out which you are, and jump in."

* * *

About.Com's page on MCS can be found at

http://allergies.about.com/health/allergies/msubmcs.htm

* * *

MCS/EI Info Website by Julie May -- info especially relevant to Canadians newly dealing with MCS -- can be found at

http://www.orbital.net/~jmay/enviro.html

* * *

Date: 2/25/2000

From: mmlytle@netscape.net

The Green Guide

Folks, I have discovered a great website through the publication I subscribe to called The Green Guide produced by Mothers and Others for a Liveable Planet.

It is http://www.scorecard.org

This website is so cool. You just enter you zip code and you can find out all of the major polluters in your area. It has a map to show you where they are located and every kind of information on the toxins they are polluting with & how many pounds of it they are releasing. It shows, air, land, ground pollution, etc. I even found out we have a polluter right here in the illustrious wooded Woodlands. It has links and already prepared emails to every person who is the right person to complain to. Now that Houston is number one for worst air in the nation, a website like this is a must for those who would like to do something about it even if to just send an email to the right person complaining about it and asking them to do more to clean it up.

I highly recommend this Green Guide to everyone. For years it has kept me informed on issues that you will not hear about in everyday news forums. It is a clearinghouse of information also listing what you can do and all available addresses and phone numbers to key people. When the government was trying to change the definition and meaning of "organic" and trying to allow toxic processes in producing organic, I became a part of a major public outcry over this issue. The government was so stunned that so many people wrote or complained about it that they decided to back off. That is just one area it has benefited me. It has helped me find alternative pest management in my area & also listed nontoxic cleaners that really work. I highly recommend it. You can check out there website to subscribe at http://www.mothers.org/greenguide/index.html. It is about a 6 page newsletter that comes monthly packed full of good info. Click on the link and see exactly what it is. I hope you enjoy it". claire


**Person-to-Person***Person-to-Person**Person-to-Person**Person**

Send your Person-to-Person ads and announcements to SWachsler@aol.com for the Summer issue of The Clarion.

* * *

GENTLE EATING CHANGES WORKSHOP

Facilitated by Deborah Mayaan

I grew up eating primarily white flour, chocolate, and TV dinners. Now I eat amazingly healthy. I follow an eating plan for my food allergies, without feeling deprived.

This road has not always been smooth; I've put myself through a lot of grief!

But I have learned that the most lasting changes come from being very gentle and compassionate with myself. I honor all my connections to food--biological, emotional, social, and cultural. I first learned to help myself make gentle changes. Then I began helping people one-on-one. Now I'm offering workshops to teach others a way of making these gentle transitions.

This eight week workshop will deal with topics such as:

Format:

Eight one hour sessions.

Sundays, 11 am MST,* March 26; April 2, 9, 16, 30; May 7, 21; June 4

Held by telephone to make this accessible for people who are homebound or live in remote locations. Workshop consists of a mixture of lecture/materials presentation, discussion, and writing exercises.

Materials costs:

It's possible to meet as a group over the phone, by linking a number of people using three-way calling. If your telephone provider is USWest, this feature is available on a per-use basis for 75 cents. You can get instructions from me or from USWest. If you have a different telephone provider, please contact them about availability, cost, and instructions for three-way calling. Participants outside the greater Tucson area will also be responsible for their own long-distance charges.

As an individual without institutional funding, I do not have the resources to offer interpretation services. People who require an interpreter for hearing or speech disabilities, or for communicating in English, will need to provide and pay for their own interpreters. In the past, I've increased the financial accessibility of workshops by writing grants. If you know of an organization that might fund this workshop, I'm open to the possibility of writing or co-writing a grant for future workshops.

Participants will also provide their own writing resources (whatever works for you--paper and pen/cil, tape recorder, computer, etc.)

Payment:

Sliding scale, $20--$10/session.

$10 rate is for people currently on food stamps. All others pay $20/session.

Payment for first two sessions due at registration. Remainder can be paid weekly, prior to each session. Payment can be made in U.S. dollars or Tucson Traders (Tucson Traders is a Tucson/Southern Arizona barter network. PO Box 1842,Tucson AZ 85702, 520-388-8844)

Registration:

Participation limited to six people. You can pre-register by telephone or e-mail. I will then send you a registration form. You will mail that form back to me with your deposit.

520-822-2643; 7 am--3 pm MST, Sunday--Thursday

dmayaan@mindspring.com

Registration is first come--first serve.

My credentials / perspectives:

I draw on my own experiences of personal change, my professional training (BS Biology; MA Educational Psychology), my years of experience as a peer counselor and facilitator/workshop leader, and my experiences responding to people's needs as a manager in retail health food.

I have personal experience dealing with making changes for food allergies, hypoglycemia, and Candida-control. I was a vegetarian for many years and draw on principles from macrobiotic and Ayurvedic traditions. Yet I found I needed to eat meat once I developed serious food allergies to beans and nuts. I also incorporate blood type theory in my own eating plan (I'm type 0).

I also have experience helping other people make changes to deal with diabetes and improve coronary health.

While I do not keep traditional kosher myself, I respect this pathway and have been able to be helpful to Orthodox Jews. My own way of eating fits into the emerging practice of eco-kashrut. I have a limited understanding of the dietary practices of Islamic and Yoruban traditions. I have lived in ethnically diverse neighborhoods throughout my life and have familiarity with the eating patterns of many different cultures. My biology training taught me about the ecology of wild foods and gives me perspectives on original diets, and on modern / post colonization diets. I believe it is possible to make healthier choices while still enjoying foods that are important in our various cultures and spiritual traditions.

I also believe that our belief in our ability to make changes can be deeply affected by being told that we are not OK because we are poor, fat, sick, disabled, the "wrong" color/ethnicity/religion, or are the "wrong" gender or sexual orientation. Acknowledging these experiences can be a powerful part of the change process. I also believe it is very helpful to realize that there are times in life when we are barely able to tread water/stay afloat. There are other times when we have the resources to make quantum leaps in healing. All parts of this healing spiral are honorable; I believe in setting workable goals.

I found that "dieting" was harmful to my health, and to that of many other people. I believe all sizes of people can be healthy and happy. My goal is to help you make changes to eat healthier. This may result in weight loss or a stabilization of fluctuating weight. But this workshop is not about weight loss.

----

*Please note that most of Arizona does not observe daylight savings time. This workshop begins at 11 am Mountain Standard Time. If you live outside of greater Tucson, please note the appropriate time of workshop sessions:

Pacific *Tucson* Mountain Central Eastern

standard 10 am PST *11 am MST* 11 am MST noon CST 1 pm EST

daylight 11 am PDT *11 am MST* noon MDT 1 pm CDT 2 pm EDT

In areas that observe daylight savings time, daylight savings begins on the first Sunday in April. It ends the last Sunday in October.

Our second session will take place on Sunday, April 2nd. If you live in an area that observes daylight savings time, our meeting time will be different for the first session and the remaining seven sessions. Please note this in your calendar.

* * *

Does your State or County have an MCS org?

I'm trying to update and improve my MCS Organizations list. I only have state organizations for Alaska, AZ, CA, CT, FL, GA, IL, KY, MD, MA, MN, MO, MT, NC, OH, PA, VA, WA, AND WI. If you have the name, address, phone, and/or email address of a statewide or regional MCS organization for one of the other 31 states (or internationally) email it to SWachsler@aol.com. Thanks!

* * *

Seeking Stories of Congenital Disabilities Due to Toxic Exposure During Pregnancy

February 28, 2000

A reporter with a major national news magazine recently contacted the ABDC. He is working on a story about neurobehavioral birth defects that may be linked to toxic environmental exposures during pregnancy. Neurobehavioral birth defects include learning disabilities, attention problems, autism and PDD as well as behavioral and emotional disorders during childhood.

If you have a child with a neurobehavioral birth defect that you believe was linked to a toxic environmental exposure during your pregnancy and you would be interested in being interviewed for this story, send an e-mail to Betty Mekdeci betty@birthdefects.org . Please describe your child's problems and the type of environmental exposures you had during your pregnancy.

This is a very important story that can raise awareness about the link between toxics in our environment and the increasing number of children being born today with neurobehavioral problems.

Thank you, Betty Mekdeci, Executive Director,

Association of Birth Defect Children

http://www.birthdefects.org

* * *

Press Release

Casualties of Progress: Personal Histories from the Chemically Sensitive is a collection of stories from 57 people who suffer from the condition known as multiple chemical sensitivity, which is closely related to Gulf War illness. The book contains case histories from six veterans with Gulf War syndrome as well as one Vietnam vet injured by Agent Orange. This paperback book contains 276 pages and includes an appendix on Gulf War syndrome containing the October 1999 testimony of Dr. Claudia Miller to the House Subcommittee on Veterans Benefits. In this testimony, Dr. Miller, who is a member of the VA Gulf War Expert Scientific Advisory Commit- tee, discusses the sudden development of chemical sensitivity in those suffering from Gulf War syndrome. This sensitivity may show up as a new intolerance for various foods or alcoholic beverages or beverages containing caffeine or as a sensitivity to substances like perfume, paint, cleaning products, pesticides, or new carpet.

At the February 2, 2000, meeting of the House Committee on Government Reform, Subcom- mittee on Veterans Affairs (Christopher Shays, chair, Bernard Sanders, member), Congressman Tom Allen of Maine referred to Casualties of Progress and stated that he thought the connection between multiple chemical sensitivity and Gulf War syndrome was an important avenue for investigation.

The regular price of the book is $14 plus $2 shipping and handling, but Gulf War vets may purchase it for $10 plus $2 s&h from the book's editor, Alison Johnson, 2 Oakland Street, Brunswick, ME 04011. For information on Johnson's videos on multiple chemical sensitivity and her survey of therapies, see her website:

http://members.xoom.com/IButterfly/mcsvideo

or send an SASE to the above address.

Also available online at BN.com or Amazon.com......no discount online and they charge ~$3.95 for s/h. (cheaper to buy from editor)


***FEATURED NEWS****NEWS FEATURE****FEATURED NEWS****NEWS FEATURE***

Court Rules For In-Home Care; Supreme Courts Upholding Federal Olmstead Decision

Michael A. Riccardi, New York Law Journal

February 28, 2000, wrote:

Disabled Plaintiffs Win Right to In-Home Care

Without specific evidence of program-wide difficulties in providing services, New York City and State officials may not deny accommodations to a disabled person eligible for access to a public benefit, a Manhattan Supreme Court justice has ruled.

The decision by Justice Karla Moskowitz requires State and City officials to allow three disabled people to continue using Medicaid-funded in-home care.

The decision in Matter of Sanon v. Wing, 402855/98, represents the first interpretation in New York State of the U.S. Supreme Court's 1999 ruling in Olmstead v. L.C. ex rel. Zimring, 527 U.S. 581. Olmstead limited the government's ability to raise a defense to demands claimed under the federal Americans With Disabilities Act.

The court ruled that the ADA guaranteed access to the in-home care program for three petitioners, each of whom had several disabilities, rejecting the claims by City and State officials administering the program that it would be "fundamentally altered" if the petitioners remained in it...

Lawyers from New York Legal Assistance Group Inc. represented the petitioners.


**NEWS**NEWS**NEWS**NEWS**NEWS**NEWS**NEWS**NEWS**NEWS**NEWS**

Date: 1/6/2000

From: vorgert@nccray.com

Nike Shirts Pulled by German Stores on Chemical Scare

Excerpt follows. For full story see: aol://4344:30.bloombrg.389091.602536905

Essen, Germany, Jan. 6 (Bloomberg) --Germany's two biggest department-store owners withdrew soccer shirts made by Nike Inc. after a television program claimed they contained a chemical that could lead to infertility.

KarstadtQuelle AG withdrew all Nike soccer shirts from its shelves, while Metro AG's Kaufhof Warenhaus AG department-store unit stopped selling the line identified by the ARD public broadcaster as containing tributyrin and may pull the rest.

...Tributyrin is a fungicide used in the U.S. to remove the smell created by the bacteria in sweat, said a spokesman for Gesamttextil, the German textile-industry association. He said it isn't applied to clothes worn close to the skin in Germany.

...Tributyrin, or TBT, is often used in the shipping industry to control the growth of mold and mildew. "It's a mystery how the chemical came onto the shirts,'' said Thomas Kullick, an environmental spokesman for the textile association in Eschborn, outside Frankfurt.

Jan/06/2000

(C) Copyright 1999 Bloomberg L.P.

Bloomberg Television, Bloomberg News Radio are trademarks, tradenames and service marks of Bloomberg L.P.

***********

LOTS of CFIDS News. . . .

Date: 2/16/2000

From: vwalker@cfids.org (Vicki C. Walker)

This is a draft of an article to be published in the upcoming issue of "The CFIDS Chronicle."

Advocacy Update

By Vicki C. Walker

NIH State of the Science Consultation

On February 6-7, the National Institutes of Health (NIH) held an internal "State of the Science Consultation" on CFS in Bethesda, Md. This meeting generated considerable anger among members of the CFS Coordinating Committee (CFSCC) and patient advocates because the CFSCC was not involved in the planning, the CFIDS community was not invited to observe and no CFS clinicians were asked to participate. In addition, the NIH-chosen CFS experts were three psychiatrists who hold controversial views about the diagnosis and treatment of CFS and Dr. Stephen Straus, who has become disinterested in pursuing CFS research because his original hypotheses did not pan out and new leads are outside his area of expertise.

As a result of the uproar, the participant list was expanded and no observer was turned away from the meeting. In addition, a true "State of the Science" meeting, with full participation by the CFS community in the planning, will be held in November. Dr. Anthony Komaroff, a CFSCC member and long-time CFS researcher from Harvard, will lead the planning committee, which will include members of the medical and patient communities.

The February consultation was not a referendum on cognitive behavioral therapy for CFS, as many had feared. Some participants reported being "inhibited" by the scrutiny of the patient community, which may have caused the more controversial participants to tone down their remarks. Dr. Nancy Klimas, a CFS expert and immunologist from the University of Miami, received a last-minute invitation in response to our criticism that the group did not include any CFS clinicians. Most of the other participants were not CFS experts, but represented related fields like fibromyalgia and Gulf War illness.

Dr. Gail Cassell, a microbiologist from Eli Lilly, served as moderator of the meeting and did an excellent job of keeping the participants focused on the biological aspects of the illness. Dr. Klimas shared her vast experience in CFS research and clinical practice and helped keep the meeting focused on meeting the needs of CFS patients through research. a CFS patient from Massachusetts, provided a realistic and poignant view of her nearly 10-year battle with the illness. Despite excellent medical care, she is only healthy enough to function for four to six hours on a "good day" and can't work in her former career. She gave an impassioned plea for scientists to explore the most promising leads toward finding the cure, the cause and effective treatments for CFS, and strongly suggested that "following the depression trail" would not uncover the answers to these questions.

The scientists were asked to make recommendations for the future direction of CFS research; the following were identified as priority areas: discovering a biological test; searching for pathogens that may cause or be associated with CFS; learning about the course of the illness (including studies of new-onset patients, risk factors and complications of CFS); researching abnormalities in the endocrine, antiviral and immune systems and the hypothalamic-pituitary-adrenal (HPA) axis; finding an animal model of CFS; studying problems with sleep and exercise; using neuroimaging to look for brain abnormalities; and testing treatments (including antidepressants, cognitive behavioral therapy, Ampligen and other treatments patients are using). It is not clear how NIH will use the information gathered at this meeting.

Dr. Donna Dean, from NIH's Office of the Director, reported that it was an important "first step" toward her assigned charge of increasing cross-NIH interest in CFS research and boosting the overall CFS research effort.
 

CFS Coordinating Committee Meeting

The following day (February 8) the Department of Health and Human Services (DHHS) CFS Coordinating Committee (CFSCC) met in Washington. Dr. Dean announced that the committee management would be moved from the National Institute of Allergy and Infectious Diseases (NIAID) to the NIH Director's office. Janice Ramsden, assistant to Acting NIH Director Ruth Kirschstein, will take over executive secretary duties from Dr. David Morens, who assumed this role last year.

When Surgeon General David Satcher joined the meeting, Kim Kenney read a statement on behalf of several CFSCC appointees asking for his increased attention to and participation in CFS activities in general and the CFSCC's work in particular. (This statement is posted on the Association's website at http://www.cfids.org/advocacy/satcher2-00.html) Dr. Satcher stated that his busy schedule prevents him from attending the entire CFSCC meetings, but that he trusts that his staff will report the Committee's activities to him.

The Centers for Disease Control and Prevention (CDC) announced that in 2002 the U.S. diagnostic code for CFS will be moved from "General symptoms -- Malaise and fatigue" (780.71) to "Other disorders of the brain" (G93.3), which is the code the World Health Organization (WHO) established in 1992 for CFS, post-viral fatigue syndrome and benign myalgic encephalomyelitis.

In 1998 the U.S. created a separate code (distinct from the International Classification of Diseases code) for CFS. Dr. Klimas, Kim and I worked closely with the National Center for Health Statistics over the past 18 months to provide scientific evidence supporting our position that the U.S. should adopt the WHO designation, providing worldwide consistency in CFS classification and a more scientifically appropriate code for CFS. Hopefully this coding change will have a positive impact on insurance reimbursement and validation of CFS.

The CDC also presented its plan for "reinvigorating" its CFS program, based on advice from external peer reviewers (see page 18) and the CFIDS advocacy community (Nov/Dec '99 Chronicle). Dr. William Reeves announced that CDC will initiate a national CFS survey; a registry of CFS patients; a revision of the CFS case definition (based on medical evidence); and research on endocrine and sleep abnormalities, pathogenic agents, environmental exposures and brain imaging. CDC will also expand its collaborations with other scientists, look into the quality of life of CFS patients, investigate reported clusters in occupations and families and launch a national CFS information campaign directed at health care providers (see below). Dr. Reeves also reported that CDC is working on 17 articles for the peer review literature on CFS.

CDC's report on its new CFS-related initiatives and a summary of the peer-reviewers recommendations are being posted on the Internet at http://www.cdc.gov/ncidod/diseases/cfs/studies.htm.

Scientific presentations on sleep disorders in fibromyalgia patients and treatment studies in Gulf War patients were presented. Dr. Joan Shaver, who also participated in the NIH Science meeting, stated that they have been able to reproduce the symptoms of fibromyalgia by depriving healthy women of deep-stage sleep, and that there seems to be an important interaction between sleep and the endocrine system in fibromyalgia. Drs. Sam Donta and Joe Collins reported on two large-scale Department of Veterans Affairs-funded studies they are working on -- one on doxycycline treatment of mycoplasma infections and the other on cognitive behavioral therapy and exercise -- for treatment of Gulf War illness.

The CFSCC made plans to meet again in July to discuss the General Accounting Office's (GAO) report on the NIH's and CDC's CFS research programs. In contrast to 1999, when CFSCC members had to pressure DHHS to meet following the Inspector General's report of CFS misspending at the CDC, this year government representatives proposed the meeting. A regular CFSCC business meeting will also be held in November.
 

Physician Education Work Funded

On February 9th, CFIDS Association President/CEO Kim Kenney met with representatives from CDC, the Health Resources and Services Administration (HRSA) and the Illinois Area Health Education Center (AHEC) to discuss funding and implementation of a medical training curriculum on CFS. The curriculum materials were developed by an advisory committee led by the Association and the Illinois AHEC to expand recognition, diagnosis and quality care of CFS by primary care practitioners.

CDC strongly commended the group's work, so much so that they agreed to fully fund a grant to test and implement the curriculum through a train-the-trainer series of workshops. Since the question we hear most often from CFIDS patients is, "where can I find a doctor who understands CFIDS?," The CFIDS Association is very excited about this opportunity to reach out directly to health care providers to teach them how to improve their care of persons with CFIDS.
 

CDC Investigations Heat Up -- Again

On February 2, the Washington Post broke a story that the CDC's diversion of research funds was not limited to its CFS program -- CDC also misinformed Congress about the amount of money it was spending on hantavirus, a killer virus studied in the same CDC division as CFS.

The House of Representatives' Labor, Health and Human Services, Education and Related Agencies (L/HHS) Appropriations Subcommittee already had hearings scheduled with DHHS Secretary Donna Shalala and CDC Director Jeffrey Koplan for the week of February 7th, so the Post story appeared at the perfect time for Congressmen to grill them about the reports of fund diversions.

On February 8th, Secretary Shalala apologized to the Labor/HHS Committee for what she termed "timely reallocations" of CFS and hantavirus research funds and said she was taking "unprecedented and aggressive action" to ensure that reports to Congress are accurate. Chairman John Porter (R-Ill.) told the Post that he remains concerned about "the culture" at CDC. "There is something going on within this institution that leads to a cavalier approach" in its reporting to Congress, he said. "This raises questions as to what other inaccuracies there might be." In response to a question from Representative Rosa DeLauro (D-Conn.), Shalala said she had communicated prior corrective measures to the CFSCC and the CFIDS community, although numerous requests for a meeting with her from The CFIDS Association have gone unanswered.

On February 10th, Dr. Koplan told the Labor/HHS Committee that he had ordered an independent audit of all of CDC's programs and that Dr. Brian Mahy, who was pinpointed by the Inspector General as responsible for the diversion of CFS funds, had been "reassigned" from his duties as Director of the Division of Viral and Rickettsial Diseases (DVRD) at CDC and James LeDuc will take over this position and the $45 million budget Mahy formerly managed. Dr. LeDuc is a virologist with 25 years' experience, including several years fighting bioterrorism and viral infectious diseases and promoting international health issues at CDC's National Center for Infectious Diseases (NCID), which oversees DVRD and the CFS program. He is reported to be an honest and ethical scientist.

Rather than delivering a prepared presentation, Koplan answered questions from Committee members. Representative David Obey (D-Wis.) suggested that CDC did not take CFS seriously, which disturbed him greatly since he had a former staffer commit suicide because of the disability related to CFS. CDC "has an obligation to have the guts to come up here and explain to Congress" how it uses its funds, Obey told Koplan. Representative Jay Dickey (R-Ark.) stated he was "losing confidence" in CDC and Representative Henry Bonilla (R-Tx.) asked whether the diversion of funds was intentional or based on stupidity; Koplan agreed that it wasn't a very intelligent decision. Representative Nita Lowey (D-N.Y.) expressed her concern about the progress of science on CFS, given her long-standing interest in the needs of patients. Koplan assured her that the research was on-track and that new personnel in the CFS program and the impending publication of the Wichita prevalence study would significantly boost the CFS program.

In addition to the Labor/HHS Hearings, two House subcommittees are considering their own investigations. On February 8th, Representative Thomas Bliley (R-Va.), chairman of the House Commerce Committee, and Representative Fred Upton (R-Mich.), chairman of the Commerce Subcommittee on Oversight and Investigations, sent a letter to Koplan stating that the reports of fund diversions "raise grave questions about the management of funds" at NCID. In their letter they requested documents related to Dr. Mahy's travel expenses, a February 1st independent audit of CDC's FY99 CFS program (which showed that $53,207 couldn't be accounted for last year) and all documents submitted to Congress over the past 11 years related to NCID's programs. The Commerce Committee is planning to take these issues up with CDC at a Hearing this spring. On February 10th, Representative Dan Burton (R-Ind.) announced that his House Government Reform Committee is considering its own Hearing.

The Senate has gotten involved, also. Following the February 2 Post story, Senators Arlen Specter (R-Pa.) and Tom Harkin (D-Iowa) called for an expanded GAO audit of CDC and Senator Harry Reid's (D-N.V.) request for a Department of Justice investigation of possible criminal activity related to lying to Congress remains open.
 

Lobby Day May be Moved

In order to take best advantage of events in the CFIDS community, we are considering rescheduling our annual Lobby Day from its traditional May 12th timeframe into June to take advantage of the report of the GAO's investigation of CDC's and NIH's CFS research programs. We will make a decision about Lobby Day dates in March. For the most current information, in a few weeks check out the Association's website at http://www.cfids.org/advocacy/ld00.html, or send your name and address with a request for "Lobby Day Info" to the Association's mailing address or to e-mail c-act@cfids.org.

-------------------------------------------------

The CFIDS Association of America
Advocacy, Information, Research and Encouragement for the CFIDS Community
PO Box 220398
Charlotte NC 28222-0398
Voice Mail: 800/442-3437
Fax: 704/365-9755
WWW: http://www.cfids.org

General E-mail: cfids@cfids.org

**********

Date: 1/13/2000

From: a.jackson@rocketmail.com

Recordability Of Asthma Attack Due To Perfume At Work

I found this on the Department of Energy's site. It is from the Department of Energy's Worker & Safety Response Line. My comments and questions follow the excerpt.

For more, see http://tis-nt.eh.doe.gov/rl/pres/docs/D9701009.HTM

RECORD ID D97-01-009

STANDARD NUMBER

INFORMATION DATE 01-16-1997

QUESTION

Is this case recordable? We have an employee who has asthma. This employee has had asthma episodes resulting in work absences which her physician says were aggravated by exposure to irritants such as smoke and perfumes. Although our workplace is smoke-free, some employees wear perfumes and it is believed that these perfumes may have aggravated the asthma condition. Are perfumes worn by co-workers considered a workplace hazard?

REGULATORY REVIEW

Yes. An occupational illness is recordable when workplace conditions contribute to or aggravate a medical condition, even if the condition is a pre-existing condition. In general, each work-related asthmatic episode is recordable as a new case since it is triggered by a new exposure. The concept of employer fault does not affect the recordability. As stated in C-12 on page 35 of the "Record keeping Guidelines for Occupational Injuries and Illnesses" (the "Blue Book"), "Sections 8(c)(2)and 24(a) of the OSH Act specifically define recordable injuries and illnesses. They make no distinction between incidents that are compensable under State workers' compensation laws, incidents that are caused by worker negligence, incidents caused by employer neglect, incidents that are preventable, or the random incidents that seem to happen when no one is at fault." The hazard status of perfume does not affect the requirement to record an occupational illness triggered by exposure to it in the workplace. In discussing recordable occupational illnesses, the "Blue Book" uses the terms "environmental factors", "suspected agents", and "other conditions", without assigning a recognition of hazard to them.

Commentary from Anne (or Betty?):

Should employers be reporting incidences of asthma that are triggered by exposures to perfumes and other environmental factors in the workplace?

Is reporting "reportable" cases voluntary or are they supposed to be reported?

Reporting such case would certainly help provided data to determine if asthmatics are being triggered by exposure to perfumes and other environmental factors in the workplace and how widespread the problem is.

The Occ-Env-Med-L mail list broadcasts messages to the world of professionals in Occupational & Environmental Medicine. Our 2,700 participants include clinicians, public health experts and hygiene and safety professionals.

For questions, contact Gary Greenberg, MD at Gary.Greenberg@Duke.Edu

http://www.oempress.com

OEM Health Information, publishes "The OEM Report", and is the distributor for hundreds of books for physicians, nurses, and others interested in occupational and environmental health and safety.

See http://www.listserv.mc.duke.edu/archives/occ-env-med-l.html

for Subscription Management, Search or browse OEM-L's archives, Sponsorship opportunities available, with details online.

http://occ-env-med.mc.duke.edu/oem/sponsor.htm

***********

Date: 1/13/2000

From: A.Jackson@rocketmail.com

A Surprising Book Review from the Journal of the A.M.A.

"We have witnessed a century of proliferation of synthetic chemicals (during which) humans have experienced great increases in cancer, brain damage, asthma, and other epidemic degenerative diseases such as arthritis and coronary artery disease...Our civilization reeks with chemicals...Human health has been sacrificed to economic growth and profits, the twin idols of our time.

"Chemicals are costing us dearly in new and dreadful ways including eroded brain and degeneration. Programmed cell death (apoptosis) is out of control.

"Chemicals have injured human brains in the United States in many people who are not aware that they have been chemically exposed. Unless pandemic is stopped, it threatens our existence."

These sentences, taken from the book Chemical Brain Injury, by Kaye H. Kilburn, MD, appeared in the August 25 Journal of the American Medical Association at the beginning of a review by Alan R. Hirsch, MD, of the Smell and Taste Treatment and Research Foundation, in Chicago. Excerpts from his review follow: "So alleges Kay H. Kilburn, MD, in this scholarly treatise. To prove his hypotheses, he argues... At industrial sites (becoming progressively ubiquitous in our environment) neurotoxins are released... (which) are inhaled and absorbed into the blood, and traverse or bypass the blood-brain barrier..."

"Initially I was skeptical of Kilburn’s means of demonstrating neurologic dysfunction...(but) as part of litigation...independent of Dr. Kilburn, our center assessed olfactory function and performed classic (examinations) on several hundred of the same patients he assessed at five exposure sites; exposures had been to a multitude of toxins including arsenic, chlordane, polychlorinated biphenyls, trichlorethlylene, and toluene. Although (our methods were) markedly different from the modalities of Dr. Kilburn, our diagnoses generally concurred."

"...Kilburn (has a) disdain for psychiatry and psychiatric diagnoses. He suggests post traumatic stress disorder and somatization disorder are frequently misdiagnoses of chemical toxicity. He concludes that the diagnosis of a psychiatric illness is a denial mechanism, preventing the recognition of the true disorder: chemical toxicity...For those interested in environmental illness and neurotoxicity, I highly recommend this exposition on a potentially "hidden pandemic."

This article appeared in the November/December issue of Canary News, the excellent newsletter of the Chicago area "MCS: Health & Environment." It is now a 501(c)(3), so that both dues and donations are tax-deductible. The price is $20 for a yearly membership, with some exceptions, upon request. Send to John Truskowski, 251 Kimberly, Lake Forest, IL 60045.

Commentary from Anne Jackson, Environmental Health Association

1800 S. Robertson PMB 380, Los Angeles, CA 90035

I am almost speechless with the importance of this book review by the premier journal of the medical establishment which has heretofore given precious little consideration to the poisoning of the planet. I haven’t seen the original, so if anyone has, I would like to see it or hear your comments."

*************
Date: 1/14/2000

Sender: CHECNET-FORUM@checnet.org

EPA's Dirty Little Secrets

http://www.drbuggs.com/epasecrets.htm

Top 10 Pesticide Perils

10) If you can smell pesticides, you have been exposed to measurable concentrations. Most pesticide exposures occur without peoples' knowledge or consent.

9) It is virtually impossible to determine what you are being exposed to or predict potential adverse effects (on you, your loved ones, or your environment) because of poor (or no) public notifications following pesticide applications and failures to disclose secret ingredients on pesticide labels. Chemical companies and EPA like to call these unlisted ingredients "inert", so an unsuspecting public stays that way.

8) EPA continues to allow more than 2000 secret "inert" ingredients in pesticides (most are never tested by EPA or evaluated for toxicity) -- even after a U.S. District Court ordered EPA must disclose what's in pesticides. Virtually all foods, medicines, personal hygiene, cleaning and household products list ALL ingredients on product labels. Why is EPA wasting valuable resources to protect and defend pesticide manufacturers' narrow interests? Ask them!!

7) Pesticides do not stay where they are applied. They drift, runoff, volatilize for extended time periods, get tracked and are spread around by sweeping or mopping.

6) Pesticides are harmful to many non-target organisms, including humans and other beneficial species. Pests quickly build up resistance. People do not. Pest resistance leads to more (and more deadly) pesticide exposures.

5) Chemicals should never be your first defense against pests. Synthetic pesticides are not necessary over 90% of the time. Ineffectiveness leads to repeat exposures.

4) EPA took many safer, more effective, natural pest control products off store shelves -- and keeps them off. Labels of common multi-purpose products (which already list ALL ingredients on product labels) are not allowed to include instructions how to use them as cost-effective alternatives to pesticides -- even if they contain nothing but natural ingredients with long histories of safe, widespread use and ready availability (like natural soaps, borax, boric acid, citrus oils, plants or plant extracts). Even beerand tobacco cannot be sold for pest control purposes, wear labels or attached pamphlets telling how to use them to kill certain pests -- without first registering them as pesticides.

3) There is no reason to assume pesticides are safe. State and Federal governments do not actually test pesticides (or verify manufacturers' claims) to assure product safety before approving widespread public exposures. EPA allows several products (like Monsanto Roundup and Dow Dursban) to remain in widespread use long after manufacturer's were found submitting fraudulent animal tests or breaking laws requiring mandatory notifications of human health tragedies. Pesticides (like DDT, PCB's, Chlordane, Agent Orange...) are banned only AFTER prolonged and massive devastation to human health, non-target species, and the environment.

Just because a pesticide's been banned does not mean you're safe! EPA allows continued manufacturing of banned pesticides (repeated worker exposures and on-going emissions), warehousing (without any special safeguards), transportation (without notifying motorists, law enforcement officials or emergency response teams) and sales to other countries (exposing the rest of the human race to unacceptable risks) -- before allowing banned pesticide residues back into the U.S. on imported fruits, meats and vegetables.

2) Pesticides contaminate buildings and their occupants. EPA conducted the Non-Occupational Pesticide Exposure Study (NOPES) which focused primarily on indoor air. Of the 26 pesticides NOPES examined, 19 are neurotoxins, 18 may cause cancer, 15 are mutagens, 15 could cause birth defects and 19 can cause reproductive problems -- but allows on-going human exposures anyway! After four years of "leadership," EPA Director, Carol Browner continues to call herself "an environmentalist" and "a concerned mother."

1) Pesticides do not simply "go away" after they're sprayed. Some degrade into other chemical compounds of equal, greater or undetermined toxicity. Some volatilize, are ingested or enter the atmosphere. Some (chlorinated) pesticides destroy the ozone layer. Others, like the banned-too-late pesticide chlordane, have half-lives of at least 20 years (which means you can expect pesticide traces to linger 40 years or more).

*******

From: bcb56@ix.netcom.com (Betty Bridges)

AllerCare Products recalled due to fragrance

AllerCare, a line of products from SC Johnson for dust mite control in the home has been voluntarily recalled. The company states the fragrance in the products were too strong for those with severe allergies and asthma.

This supports increasing concerns over the potential for fragranced products to trigger asthma and allergic reactions. With the addition of fragrance to many functional products used in households as well as toiletries consumers need to be aware that these products may exacerbate allergies, asthma, and respiratory disorders.

From the SC Johnson Web site: http://www.new-allercare.com
 

SC Johnson Voluntarily Removing AllerCareT Products From Shelf

Fragrance Too Strong for People with Severe Allergies and Asthma

JANUARY 14, 2000, (RACINE, WISCONSIN)...... SC Johnson has advised retail stores across the country to remove AllerCareT Dust Mite Carpet Powder and AllerCareT Dust Mite Allergen Spray from store shelves.

The company's decision came following an analysis of phone inquiries and reports into its toll-free consumer help line. The analysis revealed a number of consumers, particularly those with severe allergies and asthma, had reported concerns and reactions related to the level of fragrance in the products. While the vast majority of consumers, over 99% of those who purchased AllerCareT, were well satisfied with these convenient and affordable home allergen control products, the level of dissatisfaction was such that the products do not meet the high standards of the company.

The company has reported these findings to the U.S. Environmental Protection Agency, who is aware of and supports this voluntary action.


*************

PERFUME INDUSTRY ORGANIZING AGAINST US??

From: Barb Wilkie <wilworks@LanMinds.Com>

Lest there be any doubt about why the NY Times has not printed word one about the FDA Petition, or any of our responses to their articles about the western mainstream medical industry just simply not being able to figure out why there is a rise in asthma and asthma deaths, take a gander at the following.

Boy, oh boy, would I love to know what these "Malicious Lies & Tantalizing Truths" are!

Does anyone know anything about this? Is this an annual event?" -- barb

++++++++++++++++++++++
 

Holiday '99: Malicious Lies & Tantalizing Truths

The Fragrance Foundation and the New York Times invite you to the first meeting of the New Millennium

http://www.fragrance.org/cgi/fetch_outer_events.cgi?thing=1831359

Or this?

http://www.fragrance.org/cgi/fetch_outer_news.cgi?thing=7500305

FOR IMMEDIATE RELEASE

January 12, 2000

Contact: Tiffani D. Carter

212-725-2755, 212-779-9058

New York, NY- On February 3rd, The Fragrance Foundation, in conjunction with The New York Times, will take an unprecedented look behind the Holiday '99 shopping euphoria, and analyze what it means for the industry in the topsy turvey market of the new millennium.

To sort out fact from fiction, a luncheon discussion, themed "Malicious Lies & Tantalizing Truths," will be led by three experts who will share their views and insights: Susan Babinsky, Vice President, Consumer Products, Kline & Company; Leslie Kaufman, Retail Reporter, The New York Times; and Lynn Franco, Director, Consumer Research Center, The Conference Board.

Philip Shearer, Chairman of the Board of The Fragrance Foundation and President, Perfume & Beauty Division, Cosmair, Inc. will present opening observations.

The luncheon meeting takes place at The Waldorf-Astoria, Starlight Roof in New York City.

Individual tickets are $125 for Foundation members, and $170 for non-members.


***************

Dangers of Radio and Electric Wave Radiation

Date: Jan 31, 2000

From: Libby Kelley

Dear Friends,

Dr. Neil Cherry held a long conversation with Linda Howe last night, January 30, which aired on radio stations all over the United States, reaching into the homes of more than 35 million regular listeners plus the uncounted numbers of people who tuned in after being alerted about this interview. Linda quoted from Dr. Cherry's June 1998 report on the effects of non-ionizing radiation on humans, animal and plant cells:

"There is strong evidence that extreme low frequency (ELF) and radio frequency microwaves (RF/MW) are associated with accelerated aging (enhanced cell death and cancer) and mood, depression, suicide, anger, rage and violence, primarily through alteration of cellular calcium ions and the melatonin/serotonin balance." - Dr. Neil Cherry, Lincoln University, New Zealand from his June 1998 report, Actual or potential effects of ELF and RF/MW radiation on accelerating aging of human, animal or plant cells. The complete transcript ("More Bans on Cell Phone Use by Drivers") can be downloaded from Linda Howe's website:. http://earthfiles.com/earth113.htm

Based on the listener feedback since this show aired (we just learned that faxes, emails and phone calls have been piling in) we were informed this morning that The Art Bell Show will continue to cover this story and Linda Howe will continue to be our champion on this issue in pursuing the story on this major societal issue as part of her regular weekly contributions to the Art Bell Dreamland Show.

On the show, Linda referenced Dr. Ross Adey's web site: http://www.electric-words.com/adey/adeyindex.html

Linda also recommended B. Blake Leavitt's book, and called it a "brilliant" book, a must read for anyone concerned about this issue. She quoted from it in the interview. This book may be ordered by going to http://www.wave-guide.org/library/bibliography.html

We are all very grateful to those who worked with such great persistance to get this important show aired.

(See the book Electromagnetic Fields, A Consumer's Guide to the Issues and How to Protect Ourselves by B. Blake Levitt © 1995 for an excellent overview of the problems, medical research and unknown consequences of global electromagnetic pollution that is placing all earth life in a soup of microwave and radio frequencies.)

Web Sites

http://earthfiles.com/earth113.htm

http://www.electric-words.com/adey/adeyindex.html

Best Wishes,

Libby Kelley, Executive Director
Council on Wireless Technology Impacts
aka ~ Ad Hoc Association of Parties Concerned about the FCC's Radiofrequency Radiation Health and Safety Rules
936-B Seventh Street, # 206
Novato, California 94945

Website: http://www.ccwti.org

Phone: 415-892-1863

Fax: 415-892-3108

************

Washington State MCS Awareness Proclamation Signed by Governor Locke!

Date: February 26, 2000

From: islandaire@pioneernet.net (Lori Oneal)

Dear Friends & Advocates,

Governor Locke has declared May 7-13, 2000 as "Multiple Chemical Sensitivity Awareness Week" and signed a proclamation designating it official!

We hope to have the original proclamation scanned on the web very soon so you can print, copy and circulate! (See original below).

We have two full months to prepare for Awareness Week and "Breath of Fresh Air Day" (use sense not scents!) on May 12, which falls on the Friday of Awareness Week. May 12 has been designated as an annual, international chemical free day. If the general public is educated enough throughout Awareness week, they just may be willing to leave some of their "chemical stuff" behind for that one special day! What an impact it would make. Some folks will probably notice the increased air quality and quite possibly be feeling healthier at the end of their workday! Do you think we could convince a few thousand to join in? Maybe even a million? Let's work together and make it happen. Project coordinators needed! The sky's the limit.

The Proclamation contents are not as strong as we had hoped for, however, let us focus on "MCS AWARENESS WEEK" May 7-13 and take advantage of the fact that we have a week designated for us in 2000! Lets take it to the streets!

(Note: For more on state MCS Awareness Week proclamations, see the Activism section. -SW)

* * * *

The State of Washington Proclamation

WHEREAS, people of all ages in Washington have reported symptoms that have come to be known as Multiple Chemical Sensitivity (MCS) syndrome; and

WHEREAS, no known cure exists and no common agreement among medical providers exists as to the diagnosis of MCS, which symptoms include chronie fatigue, muscle and joint pains, short term memory loss, headaches and other respiratory and neurological problems; and

WHEREAS, a concern exists that the health of the general population is at risk from chemical exposures that can lead to illnesses that may be preventable by reducing or avoiding chemicals in the air, water and food in both the indoor and outdoor environments; and

WHEREAS, more research and understanding into the causes of MCS is needed; and

WHEREAS, information about MCS can provide opportunities for people who suffer from this syndrome to enjoy access to work, schooling, public facilities and other settings where they can continue to contribute their skill, ideas, creativity, abilities and knowledge; and

WHEREAS, people with MCS need support and understanding as they cope with this syndrome;

NOW, THEREFORE, I, Gary Locke, governor of the state of Washington, do hereby proclaim May 7-13, 2000 as Multiple Chemical Sensitivity Awareness Week in Washington State, and I urge all citizens to support increased understanding, education and research of MCS.

Signed this 23rd day of February, 2000

Governor Gary Locke

Sealed by the State of Washington Executive Dept.

***********

Perfume Causes Occupational Asthma

From: bcb56@ix.netcom.com

This is the study many that have respiratory allergies and asthma from perfumes have been waiting for. It is now "documented" that perfume can CAUSE and not simply trigger asthma. Now there is more than anecdotal accounts of perfumes being a primary cause of asthma.

Allergy 1999 Dec;54(12):1334-5

Occupational asthma to perfume.

Baur X, Schneider EM, Wieners D, Czuppon AB

A case of occupational asthma due to perfumes. A woman had worked in a drugstore for 26 years and started having problems with demonstrating perfumes. Respiratory challenge tests confirmed the respiratory response to perfumes. Due to trade secret status, the particular substance/substances in the perfumes that caused the asthma was not identified.

This is an extremely important study. The implications of fragrances causing rather than only triggering asthma is very significant. If materials used in fragrances have the ability to cause respiratory sensitization the parallel between increasing asthma rates and increased usage of fragranced products may be more than coincidental.

Betty Bridges, RN

Fragranced Products Information Network (FPIN)

************

Monsanto's name radically modified

From: Sandy Schubert <Sandy-Schubert@ci.santa-monica.ca.us>

by Julia Finch,

Friday January 28, 2000

The Monsanto company name, which has become synonymous with the genetically modified food business, is to be ditched, the company revealed last night. The beleaguered American biotech company is merging with the US-Swiss drugs group Pharmacia & Upjohn and the $50bn corporation will in future be known as Pharmacia.

"We have chosen a name with power and global relevance," said Robert Shapiro, chairman of Monsanto, who will lead the new company...

Mr. Shapiro, who championed GM (genetically modified) food, was once regarded as a visionary who would mix nutrition, biotechnology, crop protection and medicine in one commercial venture. But the Monsanto name became tainted last year as the consumer backlash against GM food spread from Europe to the US.

This is result of the people speaking out, its only the beginning. Ask your grocery store manager for labeling of ALL GM products!

Sandra Schubert
Environmental Programs Division
City of Santa Monica
200 Santa Monica Pier - Suite I
Santa Monica, CA 90401

ph: 310.458.2255

fax: 310.393.1279

email: sandy-schubert@ci.santa-monica.ca.us

web: http://www.santa-monica.org/environment

************

Barbara Boxer scores one for the Kids!

Date: 3/5/2000

From: Safe 2 Use <info@safe2use.com>

Thank You U.S. Senator Barbara Boxer (D-CA)!

Parents have a right to know when their children will be exposed to toxic pesticides, and schools have a right to learn about less-harmful alternatives. See:

http://www.safe2use.com/ca-ipm/00-03-04.htm

**********

Paratransit Ordered to Provide Voter Registration!

From: jfa@metrocil.mwcil.org (Justice For All), jfa@jfanow.org

Please distribute the following a.s.a.p.

February 10, 2000

Help make April and May voter registration months!

Congratulations to the persistent and hard working advocates in Pennsylvania. Their lengthy court battle has been won! A recent District Court decision (Association of Community Organizations for Reform Now v. Thomas J. Ridge, Docket Number 94-CV7671, January 14, 2000 - unpublished decision) in Pennsylvania has mandated that Paratransit agencies provide voter registration opportunities to their clients. The decision reads, "Defendants are hereby ordered to designate as voter registration agencies the appropriate offices within the Commonwealth which provide state-funded ADA complementary Paratransit programs..." The Pennsylvania Court upheld the 1993 National Voter Registration Act (Motor Voter) which requires that paratransit and other disability service providers offer voter registration to their clients. There are approximately one million people with disabilities who receive paratransit rides and at least 400,000 of these individuals are not registered to vote.

IMMEDIATE ACTION NEEDED!

Contact your Paratransit Providers and demand that they make April and May Voter Registration Months. Insist that the Paratransit drivers provide riders with the opportunity to register to vote at least during the months of April and May (or until they have offered registration to all of their riders). The drivers should offer voter registration cards to each rider and collect either a completed registration card or a signed document that indicates that the individual chose not to register to vote.

The Courts are a political entity. They follow election results. With the Supreme Court about to decide on the constitutionality of Title II of the ADA, let's showcase the disability community as a substantial voting block. People with disabilities must register and vote!

For further information contact the N.O.D. VOTE! 2000 Campaign at

vote@nod.org

Register to Vote Online at http://www.fec.gov/votregis/vr.htm

********

WEBSITES WITH NEWS OF INTEREST

* * *

Ozone Exposure Increases Airway Reactivity in Allergic Asthmatics

http://respiratorycare.medscape.com/reuters/prof/2000/01/01.21/cl01210g.html

* * *

Chemical Reaction!

"Chemical weapons, history, gulf war syndrome, multiple chemical sensitivity, pyridostigmine bromide, DEET, agent orange, dioxin, linear vs. threshold effects,

http://whyfiles.news.wisc.edu/025chem_weap/index.html

* * *

END of Page 2 of The Clarion

The Clarion, Spring 2000, Volume 2, Number 2, Page 3 - ACTIVISM

This post contains a wealth of activism opportunities. We'll kick it off with the new E-Z Act-ivist section. Following that are activism opportunities relating to CFIDS funds, MCS awareness, anti-pesticide organizing, cross-disability rights (such as keeping the ADA strong), and more.

Enjoy! Let's bring in a greener, healthier, more liberated spring for everyone!

-SW
 
 

**EZ-Act-ivism**EZ-Act-ivism**EZ-Act-ivism**EZ-Act-ivism**EZ-Act-ivism**

This is a new section I'm calling THE E-Z ACT-IVIST. It provides brief summaries of important issues that require your support. Following each summary you will find a SAMPLE LETTER or a PHONE NUMBER. Simply make the phone call, or copy the sample letter, modify it to fit your situation, print and mail (or copy and email). Voila! Activism made easy. :-)

Please note that

1) Some of these issues are quite time-sensitive, requiring a letter in the next couple days.

2) Always include your full name and U.S. mail address in any letter, even if it's sent via email.

3) Tailor your letter a bit to reflect your personal experience. If all the letters look just the same they'll have less impact. But any letter is important! :-)

You can e-mail a copy of this section to yourself by sending a blank e-mail to ezact@herc.org

Thanks friends!

-SW

* * *

Keep Perfume Away from Kids!

From: Amy Marsh of Environmental Health Network (Canaryclub@aol.com)

This book suggests using perfumes and dad's aftershave as SMELL TOYS for infants:

HOW TO HAVE A SMARTER BABY

http://www.geniusbaby.com/genius-babies/bookandfirbl.html

Book and First Blocks (blurb about book, by Dr. Susan Ludington-Hoe, with San K. Golant) -- Bantam Books, put out by "Genius Babies" and KIDS II.

On page 189, under SMELL GAMES it says:

"Purpose: smell stimulation : you'll need: Mother's favorite perfume time: 30 seconds"

Amy wrote an outstanding letter. My letter is below. If you have kids, please include that info in your letter! -SW
 
 

**SAMPLE LETTER**

Your ADDRESS

THE DATE

Dr. Susan Ludington-Hoe
"Genius Babies" and Kids II
The Infant Development Resource
1245 Old Alpharetta Road
Alpharetta, GA 30202

Dear Dr. Ludington-Hoe,

I am chagrinned to learn that your new book, How to Have a Smarter Baby, advocates using perfume and aftershave as a smell toy for infants. Perhaps you are not aware that synthetic fragrances such as cologne, perfume, and aftershave lotion contain dangerous chemicals that have negative effects on the respiratory, central nervous, endocrine and metabolic systems of people who are exposed to them. Because infants are smaller and their systems more delicate than adults, they are even more susceptible to serious consequences from poisoning by common household chemicals. For instance, a 1991 EPA study found that the twenty most common chemicals in thirty-one fragrance products included some of the following: BENZYL ALCOHOL, CAMPHOR, ACETONE, BENZALDEHYDE, BENZYL ACETATE, LIMONENE. LINALOOL, METHYLENE CHLORIDE, a-PINENE, a-TERPINEOL,1,8-CINEOLE; b-CITRONELLOL; b-MYRCENE; NEROL; b-PHENETHYL ALCOHOL; a-TERPINOLENE, ETHANOL, and ETHYL ACETATE.

You will find, if you read the material safety data sheets (MSDS) for these chemicals, that they have very serious health risks. For instance, here are the health risks, excerpted from their MSDS, for three of the chemicals commonly found in perfume.

BENZYL ALCOHOL: "Irritating to the upper respiratory tract. . . . Headache, nausea, vomiting, dizziness, drop in blood pressure, CNS depression, and death in severe cases due to respiratory failure."

CAMPHOR: "Local irritant and CNS stimulant. . . . Readily absorbed through body tissues. . . . Irritation of eyes, nose and throat. . . . Dizziness, confusion, nausea, twitching muscles and convulsions. . . . Avoid inhalation of vapors."

ETHYL ACETATE (Which is a narcotic and is listed on EPA's Hazardous Waste list): "Irritating to the eyes and respiratory tract. . . . May cause headache and narcosis (stupor). . . . Defatting effect on skin and may cause drying and cracking. . . . May cause anemia with leukocytosis and damage to liver and kidneys. . . . Wash thoroughly after handling."

This is not a theoretical issue, nor a petty one. Many children and adults, including me, have had their lives altered dramatically by poisoning from common household products. I know of several children who are severely ill due to the chronic effects of common toxic chemicals. For some of them, a whiff of perfume could be life-threatening.

Please do everything possible to alert your readership to this dangerous error. This would certainly include deleting the sections fthat propose exposing infants to toxic chemicals in any future editions, as well as printing a retraction in print and on your website.

Thank you very much for your attention to this crucial issue.

Sincerely,

your signature

your typed full name

* * * *

PROTECT OUR FORESTS

From: Heidifm@aol.com

NRDC's winter 2000 "Amicus Journal" asks people to write to the chief of the Forest Service, Mike Dombeck, in support of a permanent ban on building roads in the national forests. It reports that Dombeck has been in support of this since he got this job. Aside from the fact that roads usually mean logging, a road is not innocuous in a pristine forest: Many plants and animals cannot cross a road and have their habitats destroyed. Below is a sample letter. More info at www.our-forests.org and www.akrain.org
 
 

**SAMPLE LETTER**

YOUR ADDRESS

The DATE

Chief Mike Dombeck

U.S. Forest Service

Box 96090

Washington, D.C. 20090-6090

Dear Chief Dombeck:

I understand that you have been working to protect the remaining roadless areas in our national forests. I am writing to thank you for your efforts so far and to support and encourage you to continue in this important work.

In October of last year, President Clinton proposed a permanent ban on road building in roadless areas of the national forests. According to Natural Resources Defense Council, if this proposal were adopted to its fullest extent, it would preserve 40 million to 60 million acres of wildlands (The Amicus Journal, winter 2000, p. 2). As you know, road building degrades the forests ecosystems and promotes logging, which destroys them. I support a permanent ban on both road building and logging in all of the United States national forests, particularly to Tongass. Please don t let the White House exclude the Tongass from the ban on road building.

Thank you for your attention to this matter.

Sincerely,

sign your name

type your name


 

* * *

SUPPORT PATIENTS' BILL OF RIGHTS

Dated 2/29/2000

From: William T. Krum,
Mental Health Assn of SE PA
215/751-1800 ext 215
Fax: 215/636-6300

http://www.mhasp.org

February 28, 2000--The members of the House and Senate appointed to the managed care reform conference committee will soon meet to decide the fate of patient protection legislation. The conference will attempt to reconcile two versions of the Patients' Bill of Rights legislation: the House version (H.R. 2990), sponsored by Representatives Charles Norwood (R-GA) and John Dingell (D-MI) and the Senate version (S.1344), sponsored by the Senate Republican leadership.

STRONG PATIENT PROTECTIONS IN HOUSE VERSION AT RISK

Last session, H.R.2990 was overwhelmingly approved with strong bipartisan support. The bill guarantees protection for all 161 million Americans with private health. It also provides direct access to speciality care, including mental health professionals. Among other important protections in the bill are:

However, the strong protections in H.R. 2990, especially the liability provision, could be dropped from a final bill because many of the members appointed to the conference committee were not supporters of the measure. Consumer and patient-advocacy groups continue to advocate for legislation that closely mirrors H.R. 2990, which they consider the "real" Patients' Bill of Rights.

Unfortunately, H.R 2990 also includes some harmful provisions, attached before its final passage, that would restrict access to healthcare. These provisions--medical savings accounts (MSAs) for individuals and two arrangements, association health plans (AHPs) and Healthmarts, that allow small employers and the self-employed to buy health insurance together--would avoid state mandates to offer certain benefits such as mental health coverage. These approaches would "cream" healthy

consumers, leaving those with a greater need for healthcare because of long-term illness or disability to pay higher premiums.

SENATE BILL WOULD COVER FEWER PEOPLE

The Senate version, S. 1344, would leave millions of Americans without proper protections because the scope of the bill is largely limited to the 48 million Americans under "self-insured" plans, which are exempted from state regulations. The bill also lacks an enforceable measure to hold managed care plans accountable for decisions that harm patients.

S.1344 has additional failings. Unlike the House bill:

WHAT YOU CAN DO

The conference committee is expected to resume work on producing a final bill in early March. You are encouraged to call or write your Senators and Representative to support the House version of the Patients' Bill of Rights, excluding the harmful "access provisions"(AHPs, MSAs and Healthmarts).

If your Senator or Representative is a member of the conference committee, it is imperative that you call and stress your support.

If neither of your Senators or your Representative is a members of the committee, it's still important to call and ask them to lobby their colleagues on the need for a strong Patients' Bill of Rights.
 
 

**MY SAMPLE LETTER**

Your Address

The DATE

The Honorable _____________,
United States House of Representatives,
Washington, D.C. 20515

OR

The Honorable _____________,
United States Senate, 
Washington, D.C. 20510

Dear Representative/Senator X,

I am writing to ask your support of the House version of the Patients' Bill of Rights -- H.R. 2990. I do NOT support the Senate version of this bill -- S. 1344 -- which contains the harmful provisions like-medical savings accounts (MSAs) for

individuals, and association health plans (AHPs) and Healthmarts, that allow small employers and the self-employed to buy health insurance together. These "access provisions" would avoid state mandates to offer certain benefits that will further harm patients with long-term illness or mental health problems.

I have been chronically ill since I was 25, in 1995. Dealing with an HMO the first two years of my illness made my life even more difficult. My HMO wouldn't pay for me to see a specialist in my condition, even though there were no physicians in my plan competent to treat me. This Patient Bill of Rights is sorely needed.

All Americans in managed care plans deserve protection, not just those in self-insured plans. Managed care plans should be held accountable when their decision to withhold care injures a health consumer. Physicians, not the insurer, should have the authority to decide what treatment is medically necessary. Direct access to specialists, including mental health specialists, should be guaranteed.

Please support H.R. 2990.

Sincerely,

My signature

My name

OR

PHONE OR FAX: call the U.S. Capitol switchboard, 202-224-3121, and ask for

your Representative's or Senator's office.

EMAIL (use as a last resort, it gets much less attention): Forms are located at: http://congress.org/elecmail.html.
 
 

HOUSE CONFEREES

REPUBLICANS

Bill Archer (R-TX)
Thomas Bliley, Jr. (R-VA)
Michael Bilirakis (R-FL)
John Boehner (R-OH)
Dan Burton (R-IN)
Ernest Fletcher (R-KY)
Porter Goss (R-FL)
Nancy Johnson (R-CT)
Jim McCrery (R-LA)
Joe Scarborough (R-FL)
John Shadegg(R-AZ)
James Talent (R-MO)
William Thomas (R-CA)

DEMOCRATS

John Dingell (D-MI)
Frank Pallone, Jr.(D-NJ)
Charles Rangel (D-NY)
Fortney Stark (D-CA)
William Clay (D-MO)
Robert Andrews (D-NJ)
Henry Waxman (D-CA)
Marion Berry (D-AR)

SENATE CONFEREES

REPUBLICANS

Jim Jeffords (R-VT)
Judd Gregg (R-NH)
Bill Frist (R-TN)
Tim Hutchinson (R-AR)
Don Nickles (R-OK)
Phil Gramm (R-TX)
Michael Enzi (R-WY)

DEMOCRATS

Edward Kennedy (D-MA)
Christopher Dodd (D-CT)
Tom Harkin (D-IA)
Barbara Mikulski (D-MD)
John Rockefeller IV (D-WV)
 

* * * * * * * *

THANK HOUSE APPROPRIATORS FOR HOLDING CDC ACCOUNTABLE

Date: 2/16/2000

From: Vicki C. Walker, <vwalker@cfids.org>

The Centers for Disease Control and Prevention (CDC) is under fire again for diverting CFS research funds into other programs. This time it was fueled by a February 2nd report by the Washington Post that diversions were found in CDC's hantavirus program, which was also under the direction of Dr. Brian Mahy (who was reassigned this month to another, undesignated CDC position).

During regularly scheduled Appropriations Hearings, Members of Congress asked Secretary Donna Shalala (Feb. 8) and CDC Director Jeffrey Koplan (Feb. 10) pointed questions about the diversion of funds. Please help us show our appreciation to these Members of Congress who are holding CDC Accountable for establishing a progressive CFS research program and providing accurate reports about its program funding and activities.

Please send thank you notes to:

Chairman John Porter (R-Ill.) Representative David Obey (D-Wisc.)

Representative Jay Dickey (R-Ark.) Representative Rosa DeLauro (D-Conn.)

Representative Henry Bonilla (R-Tx.) Representative Nita Lowey (D-N.Y.)

As always, please contact The CFIDS Association and let us know to whom you wrote and what response you received.
 
 

**SAMPLE LETTER**

YOUR ADDRESS

THE DATE

The Honorable (full name)
United States House of Representatives
Washington, DC 20515
 

Dear Representative (last name):

Thank you for your questions during the February Labor/HHS Hearings about the diversion of chronic fatigue syndrome (CFS) research funds by the Centers for Disease Control and Prevention (CDC). As one of over 800,000 Americans with CFS, I am especially grateful to you for holding CDC accountable for establishing a progressive CFS research program and providing accurate reports about its support of CFS research activities.

Sincerely,

Your signature

Your typed full name


 

* * *

Products that Now Have Added Fragrances -- Tell Companies No!

From: Marjorie Rosenfeld (marjorierosenfeld@earthlink.net)

Date: Feb 11, 2000

Just at a time when efforts are underway to raise the public's awareness of the dangers of fragranced products, two manufacturers have recently added unbearable new fragrances to their products.

Spray 'n Wash used to be manufactured by Dow but now comes from Reckitt & Colman Inc., Wayne NJ 07474-0945. The new bottle notes that the product has "Advanced Stain Care." Whether there's really anything there that makes the new product handle stains any better than the old product did I don't know. The old Spray 'n Wash worked fine for me. But what I'm sure the new Spray 'n Wash has that the old one didn't is a new fragrance that smells to high heaven. (Call Reckitt & Colman at 973-686-0278.)

Similarly, Electrasol (for years recommended by Natalie Golos in her books for chemically sensitive people), from Benckiser in Danbury CT 06810 (Consumer Relations: 1-800-284-2023), now has an added "Fresh Scent" which will drive you right out of your kitchen into the farthest reaches of your house.

I've contacted both manufacturers. Neither appears to have any intention of changing their "new, improved" product. Oh why, oh why, can't a good thing just be left alone?!

Please get the word out! Call these two companies and tell them that you won't buy products with toxic chemicals and added fragrances!
 



**ACTIVISM OPPORTUNITIES****ACTIVISM****ACTIVISM OPPORTUNITIES**ACT**

PROJECT IMPACT LIVES UP TO ITS NAME

The article below -- in addition to giving contact info for numerous California anti-pesticide organizations -- provides all of us with excellent examples of creating organizing -- how to get the attention of the people who make policy and motivate them to work for our goals.

-SW

From: Californians for Pesticide Reform <pests@igc.org>

Project Impact Update Vol.7 -- Local Action for Statewide Reform

November/December 1999

Project Impact: Local Action for Statewide Reform is a campaign of the Pesticide Watch Education Fund and Californians for Pesticide Reform (CPR). Project Impact supports and promotes local policies and programs for safe and sustainable pest control. These local efforts serve as models that inspire statewide reform to protect the public, workers, and the environment.

November 5-7, pesticide regulators saw first hand the real-life impacts pesticides have on Californians. Officials, organizers, and activists alike spent two and one-half days in five pesticide-affected communities during the Pesticide Impact Tour, a moving and informative event organized by CPR, Pesticide Watch, and community-based groups from Los Angeles to Monterey/Santa Cruz. The tour was designed to support local organizing efforts, educate top leadership of the Department of Pesticide Regulation (DPR) and US EPA about the human dimensions of pesticide problems in the state, and influence the direction of these key agencies. Those who participated felt the tour achieved most of its goals.

Community activists took advantage of the "face time" opportunity with regulators. Twenty people came on the tour, sharing information and perspectives. They represented groups including Madres del Este de Los Angeles, United Farm Workers, Fresno Coalition Against the Misuse of Pesticides, California Coalition for Alternatives to Pesticides, Californians for Alternatives to Toxics, Physicians for Social Responsibility, and the Hesperian Foundation.

The first tour stop was the American Lung Association office in Los Angeles. The Los Angeles Safe Schools Coalition hosted a panel about school district programs to reform pesticide use and how DPR should assist them. Robina Suwol shared the first of many compelling stories tour participants would hear throughout the weekend. She spoke of watching her children one morning walk through a mist of herbicide being applied on their school grounds. The herbicide mist was so thick that nearby cars had to use windshield wipers to remove the drifting poison. Panelists from United Teachers of Los Angeles, Pesticide Watch, and Physicians for Social Responsibility praised the Los Angeles Unified School District for passing a groundbreaking pesticide reduction policy, but stressed the importance of implementation....In the spirited discussion that followed, community members asked DPR to prepare a list of products containing hazardous pesticide ingredients-so that schools could screen products-and to provide more staff to train schools on non-toxic pest control techniques.

Early Saturday morning, members of Community and Children's Advocates Against Pesticide Poisoning guided the tour bus to four pesticide-impacted schools in the Oxnard and Camarillo region, each surrounded by agricultural fields on three or four sides. Teachers and parents on the bus pointed out numerous sites where they knew pesticide drift incidents had occurred. The community forum following the local tour moved the audience to tears. Speaker after speaker told stories of cancers, rashes, and childhood sicknesses caused by pesticide drift.

The bus proceeded north for a tour of Lompoc Valley. Volunteers for a Healthy Valley activist George Rauh explained how the local geography contributes to the negative health effects of pesticides. Prevailing ocean winds sweep pesticides along seven miles of agricultural fields, trapping the poison in Lompoc at the valley's eastern end. Erlinda Gurerro escorted bus riders to her block on Z. Street, directly adjacent to the fields. From the driveway of a neighbor who suffers from cancer, Erlinda pointed out house after house harboring victims of cancer, reproductive problems, respiratory illness, and other serious health problems.

That evening, the Lompoc Coalition for Alternatives to Pesticides packed a room with 150 people for a lively and contentious discussion of pesticide issues in the valley. Most wore pins that said "Stop Poisoning, Go Organic." Panelists described how pesticide use in the Lompoc Valley-at one time pesticide free-had skyrocketed over the years, and how local weather patterns concentrate airborne pesticides.

George Rauh chronicled residents' history with DPR. Called upon to address the situation in 1992, DPR has not reduced any pesticide use in seven years, generating only inconclusive studies. George carefully detailed DPR's inaction, assigning a score for DPR's progress over the seven years, for a total of seven zeros. During the open microphone session following the panel, a variety of community members, including some growers, addressed the regulators. Numerous residents asked DPR to stop studying them to death (literally) and begin promoting safer alternative pest control in their valley.

Sunday morning the tour arrived in San Luis Obispo, where County Agricultural Commissioner Richard Greek and the Environmental Center of San Luis Obispo (ECOSLO) hosted a meeting showcasing the Farmworker Safety Initiative (FSI). FSI is a collaborative project between the county agriculture department, ECOSLO, California Rural Legal Assistance, Environmental Defense Center, the county health commissioner, and local agricultural industry. FSI members highlighted how they identify and address problems jointly, working together to improve farmworker safety.

Farmworkers testified to the severity of the problem, underscoring the need for change. Most participants praised the County Agricultural Commissioner's leadership in bringing multiple parties to the table, but some stressed that many more parties needed to be there.

En route to Watsonville, Bill Brasier of Group Against Toxic Spraying (GAToS) and Lee Hudson of California Coalition for Alternatives to Pesticides (CCAP) briefed tour participants about roadside herbicide use and alternative vegetation management. Their on-the-bus presentation highlighted the need for DPR staff to be versed in alternative roadside vegetation control and to provide local and county level institutions with more information and training on roadside herbicide alternatives.

lso en route, Amy Courtney of United Farm Workers of America AFL-CIO (UFW) briefed participants about the lack of protections for farmworkers in California. Amy reviewed findings of the report co-authored by UFW, Fields of Poison. Her presentation emphasized that farmworkers are on the frontline of pesticide exposure, and that enforcement of protections is disastrously inadequate.

At the tour's final stop, a crowd of more than one hundred gathered in Watsonville to demand specific actions from DPR and US EPA. The forum, hosted by Toxics Action Coalition of Monterey Bay (TAC) and UFW, discussed problems such as cancer clusters, pesticide drift into homes and schools from agricultural fields, and pesticide runoff into waterways and surfing locations. During the open microphone period, local residents requested aggressive, immediate action by DPR but received no commitment from Paul Helliker. To conclude, TAC presented Helliker with a giant green "Key to Our Sustainable Future," and led the audience in a spirited, unison reading of their action list for DPR.

The Pesticide Impact Tour lived up to its name, demonstrating that the consequences of pesticide use have reached crisis proportions in many communities. The tour showed that problems requiring urgent action exist throughout the state.

Paul Helliker responded to the demands for action by pledging to promote "sound science," ban pesticides when appropriate (such as the recent ban of DDVP), and provide continued pesticide management grants and pesticide alliance grants. When pressed, however, the DPR Director would not move beyond the existing regulatory framework and did not agree to shift DPR toward proactive promotion of alternative pest management.

After the tour, many participants said the tour fostered and strengthened their deep commitment to pesticide reform. Most concluded that leadership and comprehensive solutions will not originate with the current administration. These will fall to activists and supporters around the state willing to work for change. CPR coalition is now planning the next steps to achieve statewide reform.

For more information: Gregg Small, Pesticide Watch, (415) 292-1488, Email:

greggsmall@earthlink.net ; or Joanie Clayburgh, CPR, (415) 981-3939 x 5, Email: jclayburgh@igc.org.

Ventura School District Adopts Strong School Pesticide Reform Policy

The policy bans toxic category I and II pesticides, Proposition 65 pesticides, and pesticides known by US EPA to cause cancer. The ban takes effect in 6 months. The new policy also requires that non-toxic alternatives be given preference over pesticides. It incorporates the precautionary principle, stating that, by definition, no pesticide is free of risk. The policy establishes protection of public health as the district's number one priority and the board allocated $250,000 for its implementation. For more information: Mary Haffner, CCAAPP, (805) 650-9334, E-mail: MaryHaff@aol.com.

Santa Clara and Nevada Counties Begin Roadside Pilot Projects

Group Against Toxic Spraying (GAToS) & Group Against Spreading Poisons (GASP) For more information: Bill Green, GAToS, (408) 295-4846, Email: wmgreen@ix.netcom.com; Lee Hudson, GASP, (530) 265-5001.

Other Project Impact Groups:

Albany Coalition for Environmental Health (ACEH)-Bay Area

ACEH works to protect school children from pesticide use on and nearby school grounds. For more information: Dorothea Dorenz, ACEH, (510) 525-8717, Email: ddorenz@jps.net.

Beyond Pesticides Santa Clara (BPSC) BPSC works to make Santa Clara County buildings, parks, and roadsides safe for workers and the public. For more information: Cynthia Torres, BPSC, (650) 967-6670.

California Coalition for Alternatives to Pesticides (CCAP)- Nevada City CCAP is pressing to end all herbicide use in forests. For more information: Lee Hudson, CCAP, (530) 265-5001.

California Communities Against Toxics (CCAT)-Rosamond CCAT is working to prevent the relocation of a chlorpycrin and methyl bromide manufacturer, Niklor, in their community. For more information: Jane Williams, CCAT, (805) 256-0968, Email: dcap@qnet.com.

Davenport Citizens Association (DCA)-Santa Cruz County DCA campaigns to protect their community from pesticide drift urging neighboring growers to adopt organic production. For more information: Robin Rooke, DCA, (813) 454-0729.

Fresno Coalition Against the Misuse of Pesticides (Fresno CAMP)

Fresno CAMP monitors local agricultural pesticide use and educates their community about pesticide hazards and alternatives. For more information: Erik Spiller, Fresno CAMP, (559) 294-1670, Email: eriks21@yahoo.

Jumping Frog Institute (JFI) & People For Healthy Forests (PHF)-Sonora JFI and PHF increase public and government awareness about the impacts of hexazinone and other forest herbicide applications in forests. For more information: Bob Stack, JFI, (510) 769-6308, Email: jumpingfrog@earthlink.net.

La Selva Environmental Concerns Committee (LSECC)-Santa Cruz County LSECC promotes organic agriculture in their community to better protect their health and environment. For more information: Ron Smith, LSECC, (831) 684-0674.

Los Angeles Safe Schools Coalition (LASSC) LASSC is watchdogging implementation of their new pesticide reform policy in the Los Angeles Unified School District. For more information: Sandy Schubert, LASSC, (310) 458-2255, Email: buliblue@earthlink.net.

Midway Residents Against Pesticide Poisoning (MRAPP)-Madera MRAPP works to protect the community from pesticide drift. For more information: Justin Ruben, (559) 486-0165, Email: fresno@pesticidewatch.org.

Oakland Education Association (OEA) OEA is promoting a school district pesticide reform policy for the Oakland Unified School District. For more information: Mark Rendon, OEA, (510) 647-3656, Email: mrendon@ousd.k12.ca.us.

Philippine Action Group for the Environment (PAGE)-Los Angeles PAGE works to educate their communities about pesticide use in schools and implements the new Los Angeles Unified School District policy. For more information: Fe Koons, PAGE, (310) 513-1030, Email: fekoons@aol.com.

People's CORE (Community Organization for Reform and Empowerment)-Los Angeles

People's CORE works to educate their communities about pesticide use in schools and supports implementation of a least toxic pest control policy in Los Angeles Unified School District. For more information: Al Garcia, People's CORE, (213) 625-7705, Email: p_core@earthlink.net.

San Francisco Safe Schools Coalition The San Francisco Safe Schools Coalition is working to implement a pesticide reform policy adopted in 1997. For more information: Beverly Koenig, San Francisco Safe Schools Coalition, (415) 648-4916.

Toxics Action Coalition of Monterey Bay (TAC) TAC advocates for better protection from pesticides in their schools, neighborhoods, and community and promotes sustainable alternatives. For more information: Jim Scott-Behrends, (831) 728-9138, Email: jsbehrends@aol.com.

Volunteers for a Healthy Valley (VHV)-Lompoc VHV works to protect their community from agricultural pesticide drift. For more information: George Rauh, VHV, (805) 736-5239, Email: grauh@cocentric.net.

To join Project Impact, to submit an update, or for more information contact Pesticide Watch Education Fund or CPR.

Pesticide Watch Education Fund, 450 Geary Street, Suite 500, San Francisco, CA 94108. Phone: (415) 292-1488, Email: info@pesticidewatch.org, or WEB: http://www.pesticidewatch.org.

Californians for Pesticide Reform, 49 Powell Street Suite 530, San Francisco, CA 94102, Phone: (415) 981-3939, Email: pests@igc.org, Website: http://www.igc.org/cpr

For information on activities in your area contact the local Pesticide Watch Field Organizer/CPR Regional Coordinator.

- Bay Area: Elisa Lynch-(415) 292-1486, Email: bayarea@pesticidewatch.org

- Central Valley: Justin Ruben, (559) 486-0165, Email: fresno@pesticidewatch.org

- Central Coast: Jeanne Merrill, (831) 423-8967, Email: santacruz@pesticidewatch.org

Kelly Campbell, Californians for Pesticide Reform, 49 Powell Street, Suite 530, San Francisco, CA 94102, Phone 415-981-3939 ext. 6, Fax 415-981-2727, pests@igc.apc.org, http://www.igc.org/cpr

***************

Supreme Court to Decide ADA's Constitutionality

Date: 2/3/2000

From: jfa@metrocil.mwcil.org (Justice For All); jfa@jfanow.org

Sharon Masling, sharon@napas.org , writes:

A Real Threat:

Supreme Court May Declare Title II of the ADA Unconstitutional

The Supreme Court has decided to hear two disability discrimination cases -- Florida Department of Corrections v. Dickson and Alsbrook v. City of Maumelle -- which call into question the constitutionality of Title II of the ADA. Oral arguments will occur in April, and the

Court should issue its decision in late June. At issue is whether Congress had the constitutional authority under the Fourteenth Amendment to enact the ADA. If the Supreme Court says Congress did not, individuals may no longer be able to enforce the ADA against the states. More importantly, a negative ruling could call into question altogether the constitutionality of Title II of the ADA, as well as other disability rights statutes.

Dickson and Alsbrook are the latest in a series of cases in which states have challenged Congress' power to enact legislation regulating state conduct. Most recently, the Supreme Court held in Kimel v. Florida Board of Regents that Congress did not have the authority to apply the Age Discrimination in Employment Act to the states. In Dickson and Alsbrook, states will be urging the Supreme Court to reach the same conclusion about the ADA.

What does this mean for people with disabilities? It means that, as early as June of this year, states may no longer be subject to the ADA's requirements. Depending on the scope of the Supreme Court's ruling:

While the cases currently before the Supreme Court only address the applicability of the ADA to the states, a bad decision could lead to the Court striking down Title II of the ADA altogether. We are at risk of losing not only Title II as it applies to the states, but as it applies to all public entities.

People with disabilities worked too long and too hard to enact the ADA, only to see it succumb to a "states' rights" argument. As they did in Olmstead v. L.C., disability rights advocates can make a difference. States will undoubtedly be filing a brief with the Supreme Court, urging the Court to find that the ADA does not apply to them. Here's what you can do to weaken the impact of that brief:

Secure a commitment from your state to continue meeting and working on disability rights issues. Even if your state signs on to a brief opposing the constitutionality of the ADA, all is not lost. Your state may feel compelled to sign on to a brief because of larger "state's rights" issues. If that happens, try to secure a commitment from your governor and attorney general that they will continue to meet and work with you on issues affecting the rights of people with disabilities in your state.

Sharon Masling

sharon@napas.org

************

Health Care Facilities Guidelines Available for Comment

Date: 3/5/2000

From: davidgil@cybertrails.com

AIA Health Care Facilities Guidelines Available for Comment The American Institute of Architects (AIA) and the AIA Health Care Guidelines Revision Committee are opening a comment period from February 15 to May15, 2000 on the proposed 2001 edition of the AIA Guidelines for Design and Construction of Hospital and Health Care Facilities. ICPs, other health care professionals, architects, and engineers are encouraged to review the draft document and forward their comments to the AIA. The document is available on the AIA web page at http://www.e-architect.com/resources/ Hard copies are available for the cost of copying and mailing the document; please e-mail requests (with your telephone number) to AIAPRESS@aia.org.

**********

GAO Petition drive

Date: Jan 27, 2000

From: vwalker@cfids.org (Vicki Walker)

Reply-to: c-act-owner@onelist.com

Since last July the U.S. General Accounting Office (GAO) has been conducting an investigation of the National Institutes of Health (NIH) and the Centers for Disease Control (CDC) chronic fatigue syndrome research programs. The GAO undertook this audit based upon a September 1998 request from Senator Harry Reid, made at the urging of The CFIDS Association of America. The GAO agreed to conduct this audit following the release of the Inspector General's May 1999 report that the CDC had misused $12.9 million in CFS research funds and lied to Congress about it.

As stated in an October 1, 1999 letter to Senator Reid, the GAO is examining the scope of CDC and NIH's research activities, resource allocation and how well they collaborate with others. (To view the letter and the full document describing the scope of the GAO study, see www.cfids.org/advocacy/cdc/gao10-1-99.html). The CFIDS Association has submitted a number of documents and materials to the GAO, including those which support our belief that CDC and NIH activities are affected by a bias against the legitimacy of CFS.

Some CFIDS advocates believe that the investigation's stated objectives do not go far enough to examine underlying bias at NIH and CDC. They created a petition (www.co-cure.org/gao.htm) last summer to request that the GAO specifically address that issue. At that time The CFIDS Association recommended that the petition be delivered to Congress before Labor Day, as the GAO had not yet established the full scope of its study and the possibility of influencing the investigation was greatest if the GAO could respond immediately to the petition's demands. The originator of the petition drive disagreed with our analysis and has continued to gather more signatures.

The petition drive is ongoing and, according to Condy Eckerle, the petition's originator, currently has more than 4,000 signatures. Condy hopes it will be delivered to Congress with a minimum of 5,000 signatures. We hope that by notifying our members of the petition campaign, the 5,000-signature threshold will be reached quickly and the petition organizers will not delay further before submitting it to Congress.

Based upon conversations with people involved with the investigation, we believe that the GAO has been investigating bias against CFS at NIH and CDC. The way the NIH has planned, scheduled and set up the State of the Science meeting (see www.cfids.org/advocacy/sos.html) reveals NIAID's (National Institute of Allergy and Infectious Diseases, the lead NIH Institute for CFIDS research) enduring bias that CFS is a psychiatric illness and we are suggesting that the petition organizers act quickly to deliver the petition to Congress.

To take advantage of the immediate example NIH has provided for us to demonstrate how the agency has responded to CFS, we have sent copies of all correspondence related to this meeting (and many other federal activities) to the GAO auditor in charge of the investigation. These events have conveniently coincided with GAO interviews of members of the government's CFS Coordinating Committee (CFSCC), providing another opportunity to explain the nature and impact of NIAID's handling of the CFS program as a whole and the State of the Science meeting in particular (as well as other existing problems at NIH and CDC). We hope that this most recent example of NIH's mismanagement of CFS will influence the content of GAO's final report.

GAO is nearing the end of its information gathering on CFS issues. If the petition is to have an impact on the GAO report, it is important to act quickly.

If you have not already supported Condy Eckerle's petition please visit the website at http://www.co-cure.org/gao.htm.

Vicki Walker

The CFIDS Association of America

*******************

ADA: A Plan of Action!

Date: Jan 26, 2000

From: jfa@metrocil.mwcil.org (Justice For All Moderator); jfa@jfanow.org

Mark Johnson (Mark_Johnson@shepherd.org ) writes:

Following are 10 ideas and contact information on how to protect and strengthen the implementation of the ADA. More and more of us are feeling like 2000 is a defining moment for the disability rights movement. Your willingness to participate in the Campaign and take a lead role is most appreciated.

Thanks,

Mark

1. Implement the Olmstead decision, "Activate your license to change the system! " Check it out, at http://freedomclearinghouse.org.

2. Monitor the preparation of and participate in the preparation of briefs for the cases taken by the Supreme Court.

a) Twenty-two states filed a brief urging the Supreme Court to accept the Olmstead case for review: AL, CA, CO, DE, FL, HI, LA, MD, MI, MS, MT, NE, NH, NV, PA, SC, SD, TN TX, UT, WY and WV. After the Court accepted the case, all of these and four additional states (IN, MA, MN and WA) signed on to an amicus brief making the argument against federal court interference in states' operation of mental health and developmental disability systems, for a total of 26. However, 15 of the original 22 states withdrew from the group, announcing that they would not oppose the 11th Circuit ruling. The 15 were: Alabama, California, Delaware, Florida (the organizer of the earlier brief), Louisiana, Maryland, Michigan, Mississippi, Nebraska, New Hampshire, Pennsylvania, South Carolina, South Dakota, Utah and West Virginia. And all four new states that had joined in support of Georgia's position later wrote to the Court to withdraw. The remaining 7 were: CO, HI, MT, NV, TN, TX and WV. Contact your state Protection and Advocacy organization.   b) I need people to go back into their State's history for examples of de jure discrimination against people with disabilities. What would be most helpful is either a specific citation for the law or written policy) or, preferably, fax a copy to me at 215-627-3183. Another way to prove discrimination is to show widespread (and I mean very widespread) de facto (e.g., practices of segregating, institutionalizing, and treating as second-class citizens, as well as other non-written realities) discrimination in your State. Once again, be as specific as possible regarding references. This history is really critical. Thank you. Steve Gold (125 S. 9th Street, Ste 700, Phila., Pa. 19107, sfgold@compuserve.com ). 3. WHAT: "Don't Tread On the ADA" Rally, Title II of the ADA and Section 504 are currently unconstitutional in the states that comprise the 8th Circuit, WHEN: February 11, 2000, Noon (Gather), 1 PM (Rally Starts), WHERE: Arkansas State Capitol, Little Rock, Arkansas, FOR INFORMATION: Phil Stinebuck (501/623-7700) or Billy Altom (870/535-2222).

4. 2/24, Houston, Spirit of ADA Torch Lighting & Renew the Pledge Campaign Announcement, Andy Imparato, imparatoa@aol.com.

5. Spring, 2000, Vigil outside of Supreme Court during arguments, Janine Bertram, JanineBK@aol.com .

6. 6/11-8/7, Spirit of ADA Relay, Mark Johnson, mark_johnson@shepherd.org. As you're aware, the Relay serves several purposes.

-It's a focal point for the 10th anniversary of ADA and 25th anniversary of IDEA (yet to be fully developed).

-It's the focal point of the Renew the Pledge Campaign.

-It's a membership drive for AAPD.

-It's an opportunity to register voters.
 

7. 6/17-22, Rally and series of actions in DC, remember last year's Don't Thread on ADA Rally. Bob Kafka, bkafka@juno.com . "On June 22, 1999, the United States Supreme Court held in Olmstead v. L.C. that the unnecessary segregation of individuals with disabilities in institutions may constitute discrimination based on disability."

8. Plan a Spirit of ADA event on July 26th, 500 plus cities have already made the commitment, go to http://www.spiritofada.org after February 9th.

9. Join AAPD, go to http://www.aapd-dc.org/ Join AAPD.

10. Feel free to distribute this message and come up with your own ideas.

Remember Mouth's motto, "DO IT NOW."

Mark Johnson

Mark_Johnson@shepherd.org

*************

H.U.M.A.N. announces exploratory committee on national Chemical Free Day.

Date: 1/14/00

The Chemical Free Day would mean that for one day a year, in the work place, people would not wear perfumes. We have to select a day and a title for the day.

The committee will meet on Disablenet mailing list. We would like a representative of the all the major disability organizations, especially a representative of NCIL, ILC, and ADAPT. We would to invite anyone with a disability or without a disability to lend his or her voices to the committee. To join Disablenet mailing list go to:

disablenet-subscribe@onelist.com and click on "join the community".

H.U.M.A.N.

Paul Cannaday, President
4971 Wixson, Croswell, MI 48422
Home Phone (810) 679-0236

Website: http://members.aol.com/disablenet/Main/DisableNet.html

Email: disablenet@aol.com

********

20/20 At It Again -- This Time They're Slamming Organic Food!

Contact Advertisers and Tell Them You Won't Buy Their Products Until They Stop Supporting John Stossels' Junk Journalism!

Date: 2/25/2000

From: DrAnnMcC@aol.com
"My housemate reviewed the program (she videotaped it) and found the following sponsors or products advertised (at least in Santa Fe, NM) on the 20/20 show Feb 4, 2000, where John Stossel bashed organics. I assume that some of these are local advertisers. I'm not sure how we'd find out which if any of these sponsors advertised nationally. Call local ABC station?" Ann

***********

MCS Awareness Week 2000

Date: 2/18/00

From: sagecarol@freewwweb.com (Carol Wysocki)

(Note: You may have seen in the News section, that Washington state MCS activists have successfully won MCS Awareness Week. Well, they've done it in Connecticut too! The info below will help you achieve this in your state too. -SW)

During this first year of the new Millennium, ECHO will again request the Governor of Connecticut to proclaim the week of May 7-May 13, 2000 as "MCS Awareness Week". Our hope is that other organizations/support groups will join us in an effort to have more state governors issue an MCS Proclamation.

To facilitate this process and in response to several inquiries last year about how to request a governors' proclamation, ECHO has developed the following guidelines. There are 3 key attributes to remember: Respect, Patience, and Perseverance.

GUIDELINES:

  1. Call the Governors office to introduce yourself and your organization. Ask what the procedure is for the Governor to issue a proclamation. Share any special activities you may be scheduling for that week and answer any questions they may have about MCS. Offer to submit a sample proclamation for their review. Some Governors have their Picture taken with representative of the organization at the signing of the proclamation. That's a bonus.
  2. Send a letter confirming the telephone call and include information about your organization, MCS brochure,newsletter, and a sample proclamation. (You can use Connecticut's Proclamation at the end of this letter as a sample. It is also on ECHO's web site.) Include the name of a contact person and phone number for any further questions.
  3. April, follow-up with a phone call regarding the status of the proclamation.
  4. -PR for local newspapers -Consider taking a picture of people with MCS, Leaders/Officers with the proclamation and an article on MCS. Other articles on any special activities can also be included. i.e. Annual meeting, Guest Speaker, Healthy Hospital booklet distributed to local hospitals, ADA Brochures distributed to State agencies, Health Fair, MCS Workshop, etc.
  5. -Follow-up with a thank you to the governor for the proclamation.


ECHO will keep a listing of those states that have a proclamation on our web site so please let us know of you success. Last year we had 7 states and a couple of towns. Lets try to have at least 20 states participate in MCS Awareness Week 2000.

Don't give up if you haven't been successful in the past or this year. Try! Try! Again and Good Luck!

Carolyn Wysocki

President, ECHO

(NOTE: More on this effort below, from EHN in California)

* * *

Millennium Proclamation (Sample)

WHEREAS, Multiple Chemical Sensitivity (MCS) is a disorder in which people develop a variety of symptoms as a result of a single massive exposure or repeated low levels exposures to toxic chemicals and other irritants in the environment; and

WHEREAS, the symptoms of MCS are not limited to chronic fatigue, muscle and joint pains, rashes, asthma, short term memory loss, headaches and other respiratory and neurological problems; and

WHEREAS, MCS is a chronic condition that usually involves the central nervous system and other organ systems; and

WHEREAS, there is no know cure for MCS

WHEREAS. MCS can cause major personal financial, employment, housing, and social consequences for people who have this disability; and

WHEREAS, MCS is recognized by ADA, Social Security Administration, U.S. HUD and other state and national government agencies and commissions which have supported the health and welfare of the chemically injured; and

WHEREAS, reasonable accommodations can enable people with MCS to enjoy access to work, public facilities, and other settings where they can continue to contribute their skills, ideas, creativity, abilities and knowledge; and

WHEREAS, people with MCS need the support and understanding of family, friends, co-workers and society as they struggle with their illness and adapt to new life styles; and

WHEREAS, MCS is a preventable disorder; and

THEREFORE, in support of increased understanding and education that will aid in the prevention of MCS and research into the causes and treatment of MCS , I ,John G. Rowland, Governor of State of Connecticut, do hereby officially designate May 7 - May 13, 2000 as Multiple Chemical Sensitivity Awareness Week in the State of Connecticut.

***********

More on AWARENESS 2000

From A.Jackson@rocketmail.com

Awareness 2000 is building a list of states and contacts for proclamations to governors. If you want to join, please do so! See  http://www.ehnca.org , page A ...

Awareness 2000 has been established to Create Awareness to Multiple Chemical Sensitivity and other Illnesses that have been neglected far too long.

http://unix.adept.net/~mcsinfo/awareness2000.htm

Awareness2000 from NCChem

http://ncchem.com/aware

The Proclamation that EHN likes is one developed by the good folks in Michigan. All of us on Awareness2000 are working toward MCS Awareness Day, May 12th -- hereafter named "Breath of Fresh Air Day! (use sense not scents)"

The Michigan proclamation with my reworkings for California -- just to get it started! -- is [my edits in brackets]:

++++

-WHEREAS, People of all ages have developed the condition known as Multiple Chemical Sensitivity, often following either a single massive chemical exposure or repeated low level exposures to chemicals in the environment; and

-WHEREAS, Multiple Chemical Sensitivity is a chronic condition for which there is neither a proven treatment nor a cure, that typically affects several major organ systems with multiple symptoms that can include, but are not limited to: difficulty breathing, sleeping and/or concentrating, memory loss, migraines, nausea, abdominal pain, chronic fatigue, aching joints and muscles, disorders of the skin, and sensory dysfunctions; and

-WHEREAS, People with Multiple Chemical Sensitivity often have profound problems with health, finances, employment, housing and public access [to buildings and transit]; and

-WHEREAS, The health of the general population is at risk from [toxic] chemical exposures [in common household and personal care products] which can lead to illnesses that [may well] be preventable through the reduction or avoidance of [superfluous] chemicals in the air, water, and food in both indoor and outdoor environments; and

-WHEREAS, Multiple Chemical Sensitivity is recognized by the Americans

with Disabilities Act, the Social Security Administration, the U.S. Department of Housing and Urban Development, the Environmental Protection Agency, and other state and federal governmental agencies and commissions which have supported the health and welfare of people with this condition; and

-WHEREAS, Reasonable accommodations, educational efforts, and recognition of Multiple Chemical Sensitivity can provide opportunities for people with this condition to enjoy access to work, schooling, public facilities, and other settings where they can contribute their skills, knowledge, ideas, and creativity; and

-WHEREAS, Individuals with Multiple Chemical Sensitivity need the understanding and support of family, friends, employers and co-workers, medical professionals, other members of society, and governmental agencies at all levels to help them cope with the significant and pervasive lifestyle changes imposed by this illness;

Now, Therefore, I, [Gray Davis], Governor of the State of [California], do hereby proclaim the week of May 7 -13, 2000 as MULTIPLE CHEMICAL SENSITIVITY AWARENESS WEEK [and May 12 "Breath of Fresh Air Day! (use sense not scents)" in California].

++++++

We are seeking state contacts for the following states to work on proclamations by their governors:

From: Bill and Barb Wilkie (wilworks@LanMinds.Com)
 
Alabama
Alaska
Arizona
Arkansas
Colorado
Delaware
District of Columbia
Hawaii
Idaho
Indiana
Iowa
Kansas
Louisiana
Maine
Michigan
Mississippi
Nebraska
Nevada
New Hampshire
New Jersey
New Mexico
New York
North Dakota
Oklahoma
Oregon
Rhode Island
South Carolina
South Dakota
Tennessee
Texas
Utah
Vermont
West Virginia
Wyoming 

 

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CFIDS/FMS AWARENESS PROJECT

The Message in a Bottle (MAB) Project is a plan to raise awareness for Chronic Fatigue Syndrome and Fibromyalgia Syndrome (CFS/FMS). This is a grassroots plan that we hope will take root and spread along the Internet among individuals suffering from these and related Invisible Illnesses. While this project is primarily aimed at people with CFS/FMS, we strongly encourage others with overlapping symptoms and diagnoses to join in: Myofascial Pain Syndrome (MPS), Multiple Chemical Sensitivities (MCS), Postural Orthostatic Intolerance (POTS), Neurally Mediated Hypotension (NMH), Dysautonomia, Gulf War Syndrome, etc.

The MAB Project will be described in a Frequently Asked Questions (FAQs) format, for ease of understanding.

FAQs:

Q. What is the MAB Project?

A. We are going to start *now* to save empty prescription, vitamin, herb, and other supplement bottles. We will be mailing them to the American Medical Women's Association May 1, 2000. Please blacken out your doctors’ names. You may also wish to blacken the name of the prescription, but please leave your name, as it will be on the return address and in your letter.

For more information, contact Vivian Phillips, vivp@gte.ne t

http://home.carolina.rr.com/run/mab.html

*******

DON P. -- SOURCE OF ACTIVISM AND INFORMATION

Don Paladin is a whirlwind of an activist. He frequently sends me not only interesting and relevant web links relating to MCS and MCS activism, but also initiates innovative activism strategies, such as proposing bills to his congressperson for sponsorship. Unfortunately, I don't have room in The Clarion for all the stuff Don sends me. So, if YOU would like to know more about MCS activism and creative strategizing, email DonPaladin@aol.com and ask him to add you to his MCS activist list. One of his articles appears at the site listed below.

http://members.aol.com/wsmcsn/thepeg.htm

-S

*************

ACCESS TO MEDICAL FACILITIES FOR THE DISABLED

Date: Feb 16, 2000

From: Nancy Solo nsolo@cssa-inc.org

PLEASE FEEL FREE TO SEND THIS TO AS MANY PEOPLE & HEALTH CARE FACILITIES YOU WISH TO. THIS LETTER CAN ALSO BE USED IN NEWSLETTERS AND POSTED ON YOUR WEBSITES FOR OTHERS TO EDIT TO THEIR OWN LOCALE TO PRINT AND MAIL IF NECESSARY AND CONTINUE THE AWARENESS AND EDUCATION OF MCS.
 
 

Dear _______________________,

The escalating "personal" use of fragrance products is ubiquitous and an invasive and harmful intrusion into common air space, causing debilitating and life-threatening health reactions, such as asthma, acute respiratory distress, migraine headaches, neurologic injury, birth defects and cancer, to millions of adults and children.

The federal government has not taken any initiative to inform the public about the dangers of inhaling fragrance chemicals (other than huffing), despite its own evidence, studies and chemical analyses, which undeniably indicate that these chemicals are, indeed, toxic, and do cause bodily harm, as well as being a major contributor to poor indoor air quality, which has currently been rated at an all-time low. No safety testing on inhalation of these fragrance chemicals has ever been performed by the fragrance industry.

At last count in 1996, there were at least 40 million chemically injured people in the United States. These are people from all walks of life and who once had lucrative careers: Air Force pilots, teachers, professors, doctors, nurses, psychologists, chemists, government workers, and legal secretaries, among many other people, including students.

Perfume is composed of many of the same toxic chemicals found in the EPA's hazardous waste lists: acetone, toulene, and ethanol, among others. Other extremely poisonous substances found in fragrances are musk ambrette, musk xylene, and musk ketone.

Tobacco smoke has been banned from most public buildings, yet the indoor air quality has never been poorer in American history. It appears that smoke has been replaced with something worse: synthetic fragrances.

In April 1999, gas chromatography studies performed on Calvin Klein's Eternity eau de parfume, by two different laboratories, on two different samples (sent in their original packaging) indicates that Eternity contains 41 harmful chemicals.

Two were listed as respiratory sensitizers. At least five have the potential for central nervous system disorders. At least two are suspected carcinogens. One may provoke fetal effects. Virtually all ingredients are general irritants

To view the chemical analysis of Eternity, please read: http://users.lanminds.com/~wilworks/FDApetition/analysis.htm . The FDA has failed to make a decision, if any, regarding this petition.

All perfumes, colognes and other artificially scented products are deleterious to the health of people. It is time that doctors are aware of this alarming and rapidly increasing health issue. These products should be banned from all medical facilities. Doctors, nurses, and other staff, as well as patients and visitors, should not be allowed to wear these products inside a facility, whose sole purpose is centered around health care. People who are disabled, due to these products have every right to have access to medical treatment, without being exposed to the same chemicals that made them disabled in the first place.

Looking for more information about toxins in fragrances? Check out: "The

Acute Toxic Effects of Fragrance Products," conducted by Anderson Laboratories, an article written by Michael M. Segal MD, PhD. of Harvard Medical School, a Press Release issued by the Cancer Prevention Coalition, and an article printed in the January-February issue of "The Environmental Magazine," which explains how perfumes evolved to this dangerous level.

Also, please explore this very informative web site for information on health effects of fragrances: www.ameliaww.com/fpin/fpin.htm This site explains much more than I could write in a brief letter.

PERFUME POLLUTES! Do your part to help others breathe clean, fresh air - avoid using fragrances!!

(For more info: http://www.ourlittleplace.com/perfume.html ) Promoting a healthy environment for ALL patients should be your priority!

Most Sincerely,

Kathleen Houghton Dir.

Alaska CFIDS/MCS Association