Activism | The Canary Report

Irish blog sponsors art exhibit about Myalgic Encephalopathy and Multiple Chemical Sensitivity; the work of Canary Report contributor Eva Caballé featured

Posted by Susie

Sep 262011

The online exhibit, which also will be shown at the ME and Fibromyalgia International Conference in Ireland this October, is designed to raise awareness about the hidden suffering caused by severe Myalgic Encephalopathy and Multiple Chemical Sensitivity.

Eva Caballé

Greg Crowhurst, a nurse in Ireland who runs Stonebird, a blog about Myalgic Encephalopathy, announces the launch of Stonebird’s online 2011 Autumn Art Exhibition designed to raise awareness of the hidden suffering of severe ME and Multiple Chemical Sensitivity. The exhibit features works by Crowhurst and his wife Linda, and also Eva Caballé, who blogs at No Fun and is a contributor at the Canary Report. She also is the author of the book Missing: A life broken by Multiple Chemical Sensitivity.

A sampling of Eva’s contributions to Stonebird’s art exhibit:

Metamorphosis inside MCS

By Eva Caballé

During our lives we suffer several metamorphoses, some are painful, others are positive, chosen or not. The experience, the life itself, makes us change and evolve. My story is not different, although my most radical metamorphosis was when I fell ill with Multiple Chemical Sensitivity. And surprisingly, when I thought that my life couldn’t be more foreseeable and monotonous, from the prison that my house has become, another metamorphosis started, this time deeper and visceral. This time my metamorphosis was chosen.

The need to communicate, to let the world know that I’m still alive, to cry out for my own rights and the rights of millions of people who suffer MCS in the whole world, led me to write. The extremely reserved person that I used to be has disappeared, in order to be able to tell my story to the world, as I dig into the deepest places of my being. It’s my metamorphosis inside the metamorphosis of living with MCS.

The exhibit also will be on display at the ME and Fibromyalgia International Conference in Ireland on Oct 9th, 2011, hosted by the Academy of Nutritional Medicine (AONM) and the Midlands Fibromyalgia Group.

Eva Caballé is an economist from Barcelona, Spain, author of the book Desaparecida: Una vida rota por la Sensibilidad Química Múltiple (Missing: A life broken by Multiple Chemical Sensitivity) published in Spanish by El Viejo Topo, Barcelona, Spain, 2009. She authors NO FUN, a Spanish blog with an English section about Multiple Chemical Sensitivity, Chronic Fatigue Syndrome and Fibromyalgia, with information and advice for people who are sick or who want to live a healthier life free of toxics. She is a regular contributor at The Canary Report and at the art magazine Delirio (Delirium).

Melva Gail Smith dances her way through several Multiple Chemical Sensitivity awareness campaigns

Posted by Susie

Aug 142011

Melva Gail Smith is given the unique opportunity to participate in a Multiple Chemical Sensitivity awareness campaign that spans across the globe.

Melva Gail Smith

Melva Gail Smith, a member of Our Canary Report community, reports at The Scavenger about making multiple chemical sensitivity a household word. Melva writes about how her love of dancing was short circuited when she was diagnosed with Multiple Chemical Sensitivity, and about how she turned her energy toward educating others in the dancing world and the general public about MCS. This activism led her back into the dancing community in ways she never imagined.

It didn’t take long for me to realize that there were other dancers [at Dancin' Nuts, a local line dance group] who had the same disability and had found it to be a somewhat more MCS friendly environment. What I didn’t know at the time was that there was going to be a silver lining to my story, as I was about to be given the unique opportunity to participate in a MCS awareness campaign that would span across the globe.

When I heard dance choreographer Ira Weisburd was collecting videos from around the world for The Flash Mob Project and would be splicing them together into one large documentary film, I wanted to participate. I had never been in a flash mob before and it sounded like a lot of fun.

A group called The Nuts and Honey’s Dance Club, that also produces a TV show by the same name on Insight Channel 98; was going to record the Kentucky segment. They were asking for dancers from the Louisville and Southern Indiana area to meet at a festival to perform Ira Weisburds line dance “Shuffle Boogie Soul,” to the song “Honky Tonk,” by Preston Shannon. Everyone was learning the steps, and it was a really exciting time for me.

Getting to the film site was a challenge in itself, as it was filmed near one of Louisville’s more polluted industrial areas. This fact almost kept me from going, but I managed to get to the site and through the dance despite having both immediate and delayed reactions that went unnoticed by others. [Video of dance below.]

After the video was submitted, Ira asked dancers to share any special stories they had associated with the project, and these were posted on a website next to the videos. When my story posted next to the Kentucky video, so many e-mails were received from around the world inquiring about the condition; that Ira created the Breathe Freely Campaign to create an awareness about MCS and perhaps promote a more breathe freely attitude.

Here’s the video of the flash mob dance; Melva is in the center back in the brown skirt, sparkle shirt and striped hat (you go girl!):

Read more about The Flash Mob Project and the Breathe Freely Campaign.

Melva also started a petition asking the Olympic committee to make the Olympics and their affiliated organizations scent-free. This should include ballroom dancing and open up classrooms for many who find scented products a disability barrier. Sign the petition here.

Visit Melva’s website.

Letter: Realtors contribute to environmental illness

Posted by Guest Blogger

Jul 282011

Realtors who encourage sellers to do cheap renovations are contributing to a multitude of illnesses and unhealthy living conditions inside a “home.”

Letter to the Editor by Molly Brown.

As someone who suffers from chemical sensitivities, I am enraged at what is happening here in Vancouver, BC, Canada, in the overpriced housing market. It’s what I call “the cheap plastic condo.” This is the only affordable housing here as house prices start at $700,000 in the Greater Vancouver Regional District. (Otherwise you are looking at a 2-hour plus commute in traffic).

Unfortunately, before condos even go on the market, realtors advise sellers to put in cheap flooring, cheap bathrooms, and cheap kitchens. Then, they douse the condo in cheap air freshener prior to any open house.

The asking price per typical condo? $350,000 plus. And not even real wood floors. Vinyl siding, laminate flooring, pressboard kitchens, cheap smelly appliances, vinyl tiles, open gas fireplace. I think that if I were to test some of these new apartments, the formaldehyde content would probably be as high as FEMA trailers! Sadly, I think that realtors are especially responsible, since they are the ones telling sellers to do these cheap renovations.

The Canadian Real Estate Association has yet to respond to my emails sent to them regarding this. Realtors need to be aware that what they are doing is contributing to what causes a multitude of illnesses and unhealthy living conditions inside a “home.”

Please, realtors, stop the “cheap plastic condo” – I just need a place to live!

Molly Brown
Vancouver, BC, Canada

Video: Sherri’s journey, from living life to fighting for it

Posted by Susie

Jul 172011

Another video from Sherri, this one showing the arc of her life from active youngster to inspirational advocate for people with chronic illness. Be inspired!

Sherri on the cover of The Canary Report last Sept, featured in her video posted above (at 4:39)

Another inspirational video from Sherri, this one showing the arc of her life from active youngster to advocate for people with chronic illness. Keep up the good work, Sherri!

Sherri used to sing and dance in musicals, act in commercials, model in fashion shows, work multiple jobs cheer-lead, ride her horse, lift weights and she obtained 3 college degrees. She was a very goal-oriented young lady with huge hopes and dreams.

However, just as she set out to complete her Master’s Degree, she was stopped in her tracks by Progressive Multiple Sclerosis and Late-Chronic Lyme Disease.

Although she was determined not to allow these illnesses stand in her way, she was unable to return to work or even care for her own daily needs. Once an extremely active, unbreakable person, Sherri now struggles just to do her therapies, go to doctor appointments or shower. In addition to MS and Lyme, she also now lives with Chemical Sensitivities and Traumatic Brain Injury.

Sherri’s husband, Wayne, shared her story with friends and family through the internet, but was shocked to suddenly hear from people all over the world. Wayne quickly found out that Sherri was not alone in her battles with illness, losses and challenges with loved ones understanding. Inspired by Sherri’s life and the desire to help others, Wayne founded the Invisible Disabilities Association (IDA) which reaches around the globe to people like Sherri. IDA provides encouragement, education and support through pamphlets, booklets, videos, radio, seminars, events and an online social network.

Visit the Invisible Disabilities Association at: http://www.InvisibleDisabilities.org

Chemical Sensitivity advocate honored for environmental stewardship

Posted by Susie

Jul 042011

Mary Lamielle is the founder and executive director of the National Center for Environmental Health Strategies, an organization in New Jersey that works to improve the lives of people affected by chemical and environmental exposures.

The Star Ledger magazine "Inside Jersey" showcases Mary Lamielle, right, and husband Charles in its coverage of the Jefferson Award's ceremony. (Photo courtesy of the Star-Ledger)

Mary Lamielle, Public Interest Partners member at the National Institute of Environmental Health Sciences, was honored for her environmental stewardship June 8 in Newark, N.J., where she received the PSEG (Public Service Enterprise Group) Environmental Stewardship Governor’s Jefferson Award.

Since 2007, the Jefferson Award program has recognized citizens who make extraordinary contributions to their communities and celebrated the power of volunteerism in New Jersey to improve the quality of life there. This year’s awards honored 19 individuals, selected from more than 1,000 nominees.

A tireless advocate for people disabled by chemical sensitivities

Lamielle is the founder and executive director of the National Center for Environmental Health Strategies (NCEHS), Inc. in Voorhees, N.J. NCEHS is an organization that fosters the development of creative solutions to environmental health problems, pursuing a mission of protecting the public health, and improving the lives of people affected by chemical and environmental exposures. She was nominated for the Jefferson by Claudia Miller, M.D., who co-authored the landmark study of chemical sensitivity and intolerance for which the New Jersey Department of Health was awarded the World Health Organization’s Macedo Award; Diane Reibel, Ph.D., a professor at the Jefferson Medical College; and Jane Nogaki, former vice chair of the New Jersey Environmental Federation.

In her letter of nomination, Reibel wrote, “For thirty years through her volunteer efforts, she [Lamielle] has been a passionate educator and advocate on behalf of people sick from chemical exposures and a protector of public health” — often, Reibel noted, as Lamielle struggled with her own illness caused by environmental exposures.

Reibel, who first met Lamielle 24 years ago, pointed to her friend and colleague’s many pioneering accomplishments. These include initiating the landmark N.J. Study of Chemical Sensitivity; providing invited congressional testimony on the Indoor Air Quality Act; securing the first congressional funding for research on chemical sensitivities; serving on the expert panel convened to examine this issue; working to secure U.S. Department of Housing and Urban Development recognition of chemical sensitivities as a disability; and securing acknowledgement of chemical sensitivities as a disability in the Americans with Disabilities Act.

An honor recognized nationwide

The Jefferson Award program is administered by the N.J. Governor’s Office of Volunteerism, the Star-Ledger newspaper, and the Community Foundation of New Jersey. PSEG, Verizon, PNC Bank, and Becton, Dickinson and Company (BD) are corporate underwriters of the awards. In addition to environmental stewardship, the program recognizes individuals, businesses, and groups involved in activities ranging from arts and education to health care and community services.

Lamielle was one of four New Jersey nominees invited to the Jefferson Awards ceremony in Washington, D.C., June 20-22. Highlights included a visit with one of their state’s senators, a visit to the White House, and two evening events, one of which was the black tie Jefferson Awards for Public Service emceed by Kathleen Kennedy Townsend, daughter of Senator Robert Kennedy and niece of award cofounder Jacqueline Kennedy Onassis. National honorees this year include Supreme Court Justice Ruth Bader Ginsburg.

Lamielle is one of the 25-member Public Interest Partners, which is made up of representatives of diverse groups, including disease, disability and environmental education, and advocacy organizations. Members offer NIEHS community perspectives on the research agenda of NIEHS, and serve as a key contributor to the translation of research findings for the public, policy makers, and private foundations. Lamielle has been invited to participate in the 2011 NIEHS Strategic Planning Stakeholder Community Workshop July 12-14 in Research Triangle Park, N.C.

Lamielle calls for more answers

“I hope that the Jefferson Award for Public Service will heighten visibility of what has, for decades, been an invisible public health problem,” Lamielle said, following the award ceremony. “Eighteen years ago, members of an expert panel on chemical sensitivities and intolerances, convened by the Agency for Toxic Substances and Disease Registry, with directed congressional funds, recommended forming an interagency committee across [or which would consist of representatives of] disability, regulatory and research agencies, and clinical research using an environmental medical unit. Our organization continues to call for an interagency committee to catalyze a federal agency response to address these disabilities.”

“The recently released Action Agenda for the Centers for Disease Control and Prevention National Conversation on Public Health and Chemical Exposures [see related story] recommends research on chemical sensitivities and intolerances using an environmental medical unit. Nearly two decades have passed. Millions more Americans report serious illness and disability due to chemical exposures,” Lamielle continued. “It’s time to act.”

Link

Dan Allen Foundation, dedicated to MCS awareness, will hold first annual fundraiser June 25

Posted by Susie

Jun 142011

The foundation is named after Boston University football coach Dan Allen, who lost his life in 2004 due to a serious chemical injury that initiated Multiple Chemical Sensitivity.

Dan Allen

The Dan Allen Foundation, a non-profit 501(c)(3) organization dedicated to raising awareness about Multiple Chemical Sensitivity, will hold it’s first annual fundraiser on Saturday, June 25, 7:00 p.m. at the Westin Waltham-Boston Hotel in Waltham, Massachussettes.

The foundation is named after the late Dan Allen, a highly successful college football coach at Boston University and the College of the Holy Cross who was seriously injured by a toxic chemical exposure that led to the onset of Multiple Chemical Sensitivity. The damage to his immune and neurological systems led to his death in 2004.

The Dan Allen Foundation was founded for the purpose of raising awareness of Multiple Chemical Sensitivity Disorder (MCS) and similar neurological disorders caused by exposure to environmental toxins, chemicals, and pollutants.

The Foundation was established in the memory of Dan Allen, former head football coach at Boston University and the College of the Holy Cross. The primary aim of the Foundation is to attract attention to the hazards associated with environmental toxins, chemicals, and pollutants so that at-risk individuals may recognize and avoid exposure to such toxins and pollutants that can potentially lead to the onset of MCS and similar disorders.

MCS, its symptoms, and causal factors are largely unknown to the public at-large as it is considered a new and emerging diagnosis within the medial community. MCS is triggered by exposure to hazardous toxins, chemicals, and pollutants and its onset varies based on the extent of the exposure and the particular sensitivities of the individual.

As such, the Foundation’s purpose is to raise awareness of MCS and to educate the public on the preventative measures that can be taken to avoid its onset.

Here’s a local sports story done before Dan’s death:

I’m honored to see that a link to The Canary Report is listed on the foundation’s links page. ~Susie

Letter: Update on meeting with WHO officials about including Multiple Chemical Sensitivity in the International Classification of Diseases (ICD)

Posted by Guest Blogger

Jun 042011

Officials planned to do a generic first draft in May 2011, and say they may have a more detailed draft prepared in May 2012. In 2015, during the World Health Assembly, they will announce the results.

Letter to the Editor by Francisca Gutiérrez Claverho.

Dear colleagues and collaborators of the WHO CAMPAIGN 2011:

Please find attached the link of the summary in Spanish, French and English of the meeting held on May 13, 2011, at the World Health Organization (WHO) headquarters in Geneva, at which our group argued for global recognition of Multiple Chemical Sensitivity (MCS) and Electrohypersensitivity (EHS) in the International Classification of Diseases (ICD).

Documento pdf en castellano
English document pdf
Document pdf en français

In the words of Dr. T. Bedirhan Üstün, [Coordinator of Classifications, Terminology and Standards, Department of Health Statistics and Information], on May 16th 2011, a very generic first draft of this review would take place, and in May 2012 they may have a much more detailed draft prepared. In 2015, during the World Health Assembly, they will announce the results.

In the course of the work, there will be a scientific debate about where to place these kind of diseases. This is a complex issue, because often there are no agreements regarding the medical specialty as to where to classify a concrete pathology, especially in the case of MCS and EHS, because they are multisystemic diseases.

The draft classification will be open and transparent, and information will be available on the WHO website.

We regret that our update to you is delayed, but we have been doing revisions and suggestions re the final text, which reflects what was said by each of the participants at the WHO meeting, some of which have extremely busy agendas. On the other hand, this campaign has been run by sick people who have had to adapt the tasks at the pace that allowed their state of health.

Among the positive things we can learn from this Campaign, we would like to highlight the contact between associations, organizations and professionals worldwide, which allowed us to know each other and, hopefully, to begin working side by side.

We again apologize for this delay and we hope throughout this summer to begin organizing ourselves into groups as to work internationally to achieve our goals, our rights as patients, and solutions to our problems. Perhaps, the ideal time for these groups to start working would be September-October 2011.

We look forward to hearing from you. In the meantime, we thank you for your cooperation and support throughout the “WHO CAMPAIGN 2011.

With warm and solidarity greetings,

Francisca Gutiérrez Claverho
Presidenta Asquifyde
www.asquifyde.es
info@asquifyde.es
Telf. 652669084

PROPOSED ACTIONS TO FOLLOW SOON:

TO BE AGREED WITH THOSE ASSOCIATIONS WILLING TO PARTICIPATE

I. – In accordance with the principle of sovereignty to which to Dr. Üstün referred, it is desirable that the associations of each country do elaborate a joint petition to their respective governments asking for the inclusion of MCS and EHS in the country ICD. If considered appropriate for this purpose, we could perhaps make use of the documents presented on this occasion to WHO. The documents will be available in pdf format, so all the associations will be able to use them.

In the case of Spain, to transfer the information to the Working Group that is developing the MCS Consensus Document on the Ministry of Health, Social Policy and Equality, so they can recommend its inclusion in the ICD.

II .- To contact Dr. Üstün asking:

1) To let us know the geographical location, etc. of the various working groups of WHO that are currently developing ICD 11.

2) To inform us regarding how to present the scientific literature to fit the methodology of work of WHO and so it can be correctly valued.

3) To inform us about the criteria for the selection of external consultants who review the documentation submitted at the request of WHO.

4) To inform us about the criteria for accepting the participation of stakeholders in the development of the new ICD through the virtual platform.

III .- Once we have the above-mentioned information, to establish working groups among associations of EHS and MCS internationally, in order to act coordinately through the virtual platform.

IV .- To contact scientists to create an international group to participate in the virtual platform that is developing the ICD 11, as well as in the adaptation of scientific evidence to WHO methodology.

V. – To contact the working group REACH, as well as any other institution related to health, toxicity and environment, so they take charge or take into account the existence of emerging diseases such as MCS and EHS, and in order that they adapt their decisions to the new health paradigm posed.

~~~

Learn more about the International Classification of Diseases (ICD)

Guest Blog: Creating a fragrance- and chemical-free public restroom… the first in my neighborhood!

Posted by Guest Blogger

May 182011

We are living in South Whidbey, Washington, becoming part of a community that makes room for others in meaningful ways. My work: bringing fragrance-free practices and products to a public space in my neighborhood.

By guest blogger Mokihana Calizar.

Mokihana

Here’s the GOOD NEWS…

For the second Sunday in a row, no chemicals or fragrances were used to prepare public restrooms in our neighborhood. I swept, mopped, wiped and swished out the bowls with white vinegar, baking soda and squirts of Planet dishsoap. An important job? Oh, yes. How good this feels to be part of the solution.

How did it happen? Plan “BE”: BElieve it could be, BE positive and without resistence, BE prepared for what it takes to allow it.

This sign is now posted in the two restrooms at South Whidbey Tilth:

~~~

This is a Fragrance & Chemical Free Restroom

The Hand Soap is:

Planet

-unscented

-coconut oil based cleaner, salt,

sodium bicarbonate(baking soda).

The Freed-up and Green Cleaning Process:

White distilled vinegar and baking soda.

“taking steps to Fragrance Free in 23″

www.fragrancefreein23.blogspot.com

~~~

It was raining, the ground soggy. Our favorite neighborhood gathering place, The Sunday Farmers’ Market at the Tilth, was happening soon.

Prescott stopped for a moment, and introduced me to a man who was there before the market’s opening, “This is Mokihana, she’s taken over the bathroom clean-up.”

“That’s an important job,” the man said.

Yes, it is … and what a success it is.

Later in the day, [my partner] Pete returned to the Tilth to help clean-up. I was back in the forest making soup and relaxing. While he was there Pete stopped Prescott, “Thanks so much for letting Mokihana take care of the bathrooms. It’s making a difference for at least one more person.” (One of our friends who lives with Multiple Chemical Sensitivity had a chance to use that restroom … a big positive step!)

We are living here in South Whidbey, Washington, becoming part of a community that makes room for others in meaningful ways. In the year since we’re settled into the forest with Eileen, MK, the nine ducks, three chickens, two dogs, three cats, hundreds of trees, and countless huckleberry and wild blueberry bushes, the vibrational reality of good/hope/abundance has lined us up to believe and allow health and happiness.

The journey has been so worth the experience. Knowing what we don’t want, the opposite experiences are now moving in as replacement.

“Mokihana, you get anything on my menu for your work,” Ed said as I spread the table cloth over one of the wooden tables.

“Thanks, Ed.”

What a deal! My work: bringing fragrance-free practices and product to a public space in my neighborhood is another example of BEing and BEcoming the vibrational good-win in my real life. The unfolding was easy, there was no stuggle only a being present with no resistence with the solution.

Looking forward to more good, it feels wonderful to post “…the first one!” and know the second, third, fourth, next is in the making … somewhere!

Got a plan that needs BEcoming? Would you like to be our next? We’d love to work together and add to our list of successfull Freed-up spaces in our neighborhood.

Thanks and congratulations to South Whidbey Tilth for being “the first one!”

~~~

This post was originally published at Mokihana’s blog Fragrance Free in Twenty-23.

Letter: Thank you to elected officials for signing MCS awareness proclamations

Posted by Guest Blogger

May 172011

Please feel free to forward, repost, and otherwise share far and wide these most important public documents!

Thank you letter by Lourdes Salvador, MCS America.

Thank you to Massachusetts Governor Deval Patrick for signing a proclamation declaring May 8 – 14, 2011 Multiple Chemical Sensitivity Awareness Week.

Thank you to North Carolina Governor Beverly Perdue for signing a proclamation declaring May 2011 Multiple Chemical Sensitivity Awareness Month.

Thank you to Mayor Rob Ford for signing a proclamation declaring May 12, 2011 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivities Awareness Day.

These proclamations were made possible by countless individuals and organizations across the United States request proclamations for the many forms of environmental illness, including:

Multiple Chemical Sensitivity Awareness Month
Electromagnetic Sensitivity Awareness Month
Toxic Injury Awareness and Education Month
Indoor Toxic Mold Awareness Week
Chemical Awareness Week
Food Allergy Awareness Month
Neuroendocrineimmune Disorders Awareness Day
Chronic Fatigue Syndrome Awareness Month
Fibromyalgia Awareness Month
Myalgic Encephalomyelitis Awareness Day
Gulf War Illness Recognition Day

For more information on how to request a proclamation and plan for awareness events.

Para obtener más información sobre cómo solicitar una proclama y el plan de actividades de sensibilización.

~~~

Have a thank you letter you’d like published at The Canary Report? Submit a Letter to the Editor.

Governor Patrick proclaims May 8-14, 2011, Multiple Chemical Sensitivity Awareness Week in Massachusetts

Posted by Susie

May 172011

Governor Deval Patrick urges all citizens of the state of Massachusetts to observe May 8-14, 2011, as Multiple Chemical Sensitivities Awareness Week.