The Canary Report

Video: MCS Can Be Lonely

Posted on Sep 01, 2010 by Susie Collins in Blog, MCS, Media/Videos, Susie Collins

A bit of whimsy exploring the very sad fact that so many people with Multiple Chemical Sensitivity live an isolated life away from family and friends.

Exposures to perfumes, colognes and other chemical fragrances can cause people living with Multiple Chemical Sensitivities debilitating migraines, pain, vertigo, memory loss, permanent brain damage and worsening of condition with each reaction. Synthetic fragrances often create a barrier between those with MCS and their loved ones, causing them to feel isolated alone.

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Tags: MCS, Multiple Chemical Sensitivity, Video

Yellow Bird

Posted on Aug 27, 2010 by Susie Collins in Blog, Media/Videos, Susie Collins

“Yellow bird in the mine, I gave you my word you’d be fine.”

A sad but hopeful music video that speaks volumes to us canaries. It’s a very lucky canary who has someone in their life to pick them up out of the mine, wash them off, and fill their heart with love. xoxo

Music video animation by Kristine Thune, to the song “Yellow Bird” by Bess Rogers from her album, Travel Back EP.

Thanks, Julia!

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Tags: Art, Video

TEDTalk: Marine toxicologist Susan Shaw on the oil spill’s toxic trade-off

Posted on Aug 26, 2010 by Susie Collins in Blog, Environment, Media/Videos, Susie Collins

Marine toxicologist Susan Shaw does a TEDTalk about the consequences of using oil dispersants during the BP oil well blow out.

Of special interest to Canary Report readers is Shaw’s point about the overarching problem of lax chemical regulation in the US.

Click here to learn more about TedTalks, where the world’s leading thinkers and doers give the talk of their lives in 18 minutes.

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Tags: Chemicals, Pollution, Toxic, Video

The Chemical Sensitivity Foundation

Posted on Aug 18, 2010 by Susie Collins in Blog, Guest Bloggers, MCS

The primary goal of the Chemical Sensitivity Foundation, a 501(c)3 nonprofit corporation, is to raise public awareness about multiple chemical sensitivity.

By guestblogger Alison Johnson.

Alison Johnson, chair of the Chemical Sensitivity Foundation.

The Chemical Sensitivity Foundation, which I chair, is a national 501(c)3 nonprofit foundation that in the last nine years has represented Multiple Chemical Sensitivity interests in what I think has been a fairly effective way, given the difficulty of raising money in this field. That difficulty relates to two problems. First, people with MCS are for the most part extremely short of money and therefore are not in a position to donate much to our cause. Second, mainstream foundations and wealthy people are not likely to donate large sums until MCS is more widely accepted. These potential donors will hesitate to donate to the cause when they learn that the medical community in general is quite skeptical about MCS.

When I decided to found the Chemical Sensitivity Foundation in 2001, I asked people to be on the board whom I knew very well. Most I had known for many years. I had met almost all of them in person, been in their homes in several cases, and had talked with them by phone frequently, so I had a good idea about who was well-informed, effective, reasonable, and reliable. I chose people who had been dealing with MCS as patients or the spouse of a patient for many years, usually a couple of decades. All but one had a proven track record of major national contributions to the MCS community; their names and reputation were widely known among the chemically sensitive. This group has worked together so well that no one has left the board since we founded the CSF nine years ago.

One important aspect of the Chemical Sensitivity Foundation is that the other board members have the power to vote me out of office at the annual meeting. We also list the name of each board member on our website, together with where they live. I know of no other MCS foundation that can vote its leader out of office; most other MCS foundations do not list their board members.

During the last year, the CSF has been responsible for getting copies of my book Amputated Lives: Coping with Chemical Sensitivity into the hands of every member of Congress, every governor, and every member of the state legislatures of California, Virginia, Pennsylvania, New Mexico, Indiana, Nebraska, and Washington. (Targeted donations from residents of those particular states paid for the latter books.) We also sent copies to the top 30 department heads at the Environmental Protection Agency (EPA) and the top dozen at the National Institute of Environmental Health Sciences (NIEHS) and the Agency for Toxic Substances and Disease Registry (ATSDR). If you are not familiar with my book, you may want to read excerpts on my website, www.alisonjohnsonmcs.com. The Foreword by Dr. Christine Oliver, a professor at Harvard Medical School, is particularly useful in giving the book some credibility with people outside the MCS community.

Over the years, copies of my other two books and my documentaries, Gulf War Syndrome: Aftermath of a Toxic Battlefield and The Toxic Clouds of 9/11: A Looming Health Disaster, have also been given to every member of Congress. My 9/11 film contains interviews with three members of Congress and with experts who have major standing nationally outside of the MCS community. My Gulf War Syndrome film was accompanied by a letter of endorsement from Ross Perot, and Congressman Jerry Nadler (Ground Zero district) provided this endorsement for my 9/11 film: “I wish every politician and policymaker could see this moving and powerful film.”

One very important aspect of the CSF website is the extensive bibliography of research on chemical sensitivity that has been published in peer-reviewed journals. The website also contains the link “Fragrance Issues” that leads to the groundbreaking Centers for Disease Control (CDC) policy that includes fragrance-free standards in all CDC facilities throughout the country.

In April, I was asked to chair a series of roundtable discussions titled “Multiple Chemical Sensitivity” at the CDC national Healthy Housing conference in New Orleans. In the past month, I have given 23 radio interviews about the potential for MCS to develop among the BP oil spill cleanup workers. These interviews were with fairly important radio stations with substantial numbers of listeners, including stations in Boston, Austin, Houston, Baltimore, Milwaukee, Philadelphia, and Miami. I attend many of the Washington or Boston meetings of the Research Advisory Committee on Gulf War Veteran’s Illnesses. This Veteran’s Administration appointed committee is largely responsible for influencing millions of dollars of research into questions that are quite closely related to MCS. During the last decade, I have traveled to London, Wiesbaden, Ottawa, Montreal, and Halifax to show my documentaries to MCS groups. My DVDs are now circulating in many European countries.

The CSF is focusing at this point on raising awareness of MCS because that is a realistic goal, given our present very limited funds. It’s clear that most of the other MCS projects we would like to work on depend upon raising substantial money for the cause. That will become much easier to achieve if we can convince the general public that the condition is real and physiologically based. You can all help in our fundraising efforts by encouraging others to visit our CSF website and to support our foundation financially. We would be happy to include anyone on our mailing list who sends me their address.

In closing, let me include the résumés for the CSF board members.

Pam Gibson, Ph.D.

Pam Gibson, Ph.D., is Professor of Psychology at James Madison University. She received her Ph.D. in clinical psychology from the University of Rhode Island in 1991 and has since studied the life impacts of having environmental sensitivities. Dr. Gibson is the author of the book Multiple Chemical Sensitivity: A Survival Guide, 2nd ed., as well as numerous journal and conference papers. For further information on Dr. Gibson’s book, see www.earthrivebooks.com and for her research, see www.mcsresearch.net.

Lynn Lawson

Lynn Lawson is a Phi Beta Kappa graduate in chemistry from Beloit College and received her master’s degree in English from Northwestern University. She taught English composition and literature at the university level for several years before becoming a medical and technical writer. She has written one of the leading books about chemical sensitivity, Staying Well in a Toxic World: Understanding Environmental Illness, Multiple Chemical Sensitivities, Chemical Injuries, and Sick Building Syndrome. From 1991 to 2001, she edited the Canary News, the newsletter of the Chicago area chemical sensitivity group, which enjoyed a nationwide MCS readership.

Ann McCampbell, M.D.

Ann McCampbell, M.D., is a physician who had to stop practicing medicine after she developed chemical sensitivity. She was a cofounder of the Healthy Housing Coalition of New Mexico in 1994, and she is the chair of the MCS Task Force of New Mexico, which she helped found in 1995. In 1996, Dr. McCampbell organized and moderated a meeting of the Governor’s Committee on the Concerns of the Handicapped held in Santa Fe. At this day-long meeting, dozens of chemically sensitive people testified about the impact of MCS upon their lives. Dr. McCampbell has written a booklet titled Multiple Chemical Sensitivity that is widely used by MCS support groups across the country. She also drafted the MCS brochure printed by the MCS Task Force of New Mexico in collaboration with the New Mexico Department of Health, the New Mexico Environment Department, and the New Mexico State Department of Education. Dr. McCampbell’s latest contribution to the cause of the chemically sensitive is an article titled “Multiple Chemical Sensitivities Under Siege,” which was the lead article in the Townsend Letter for Doctors and Patients in January 2001. In this article, she describes how pesticide companies are often subsidiaries or parent companies of pharmaceutical firms, a linkage that is particularly disturbing because of the enormous influence that pharmaceutical companies have through their advertising in medical journals and their funding of academic research.

Karen McDonell

Karen McDonell, who was a paralegal before a sick building exposure made her chemically sensitive, has been a leading MCS advocate in the Seattle area, where she has assembled a database of over 800 area residents with chemical sensitivity. Her efforts led to the establishment by the Washington Legislature of a task force on MCS. McDonell organized and raised funds for the first Washington State Conference on MCS, which was held in Seattle in 1993 with over 350 in attendance. She also organized a 1996 MCS conference that was cosponsored by the University of Washington, School of Continuing Education, as well as a conference on children’s environmental health, and served as the facilitator at these conferences. McDonell is also a long-time board member of the Washington Toxics Coalition.

Gerald Ross, M.D.

Gerald Ross, M.D., is board certified in both Family Medicine and Environmental Medicine and treated thousands of patients with MCS and many ill Gulf War veterans while on the staff of the Environmental Health Center in Dallas. Prior to that period, he served for four years in Halifax, Nova Scotia, as the medical director of the world’s first government-sponsored clinic established for the evaluation and treatment of environmentally triggered illnesses, including multiple chemical sensitivity. Dr. Ross is a past president of the American Academy of Environmental Medicine and is also a Fellow of the Royal Society of Medicine in England. A frequent contributor to peer-reviewed journals, in 1998 he presented a paper demonstrating the link between MCS and neurotoxicity at the first seminar on chemical sensitivity conducted by the American Chemical Society, the world’s largest scientific organization. Dr. Ross was the opening speaker at an Ottawa symposium on MCS sponsored by the Canadian Department of National Defense in 2001.

Anne Steinemann, Ph.D.

Anne Steinemann, Ph.D., is Professor of Civil and Environmental Engineering and Professor of Public Affairs at the University of Washington. She received her Ph.D. in Civil and Environmental Engineering from Stanford University in 1993. Dr. Steinemann received the National Science Foundation CAREER Award, the highest honor for junior faculty in science and engineering. She also received the highest teaching awards for both her department and the university while a faculty member at Georgia Tech. She recently published two textbooks: Microeconomics for Public Decisions (South-Western, 2005) and Exposure Analysis (CRC Press, 2006). In addition, she has published 30 peer-reviewed journal articles. Together with a colleague, she has conducted national and regional prevalence studies of MCS and published the results in the American Journal of Public Health, Archives of Environmental Health, and Environmental Health Perspectives. Further information about Dr. Steinemann can be found on her website.

Robert Weggel

Robert Weggel received a B.S. degree in physics from MIT and studied applied mathematics on the graduate level at Harvard. From 1966 to 1996, he was an analytical engineer and applied mathematician at the Francis Bitter National Magnet Lab at MIT, where he became the assistant head of the Magnet Technology Division in 1992. From 1996 to 2002, he was a Senior Research Engineer at Brookhaven National Laboratory, where he continued to design magnets. He has lectured at dozens of international magnet conferences and has written a hundred peer-reviewed journal articles. He brings to the board of the Chemical Sensitivity Foundation the perspective of a spouse of an MCS patient, and for several years he helped his wife Diane edit the newsletter of the Massachusetts Association for the Chemically Injured. He is also a former treasurer of the New England Chapter of the Sierra Club.

~~~

Alison Johnson is chair of the Chemical Sensitivity Foundation. She received the American Academy of Environmental Medicine’s Carleton Lee award in 2004 “In recognition of exemplary efforts in furthering the principles of Environmental Medicine.” She is a summa cum laude graduate of Carleton College and studied mathematics at the Sorbonne on a National Science Foundation Fellowship. She received a master’s degree in mathematics from the University of Wisconsin, where she studied on a Woodrow Wilson Fellowship. She has produced and directed documentaries titled Multiple Chemical Sensitivity: How Chemical Exposures May Be Affecting Your Health, Gulf War Syndrome: Aftermath of a Toxic Battlefield, and The Toxic Clouds of 9/11: A Looming Health Disaster. She has also edited a book titled Casualties of Progress: Personal Histories from the Chemically Sensitive and has written a book titled Gulf War Syndrome: Legacy of a Perfect War. In 2008, she published her latest book, Amputated Lives: Coping with Chemical Sensitivity. For information on these books and DVDs, see www.alisonjohnsonmcs.com.

©2010 Alison Johnson

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Tags: Books, MCS, Multiple Chemical Sensitivity, Video

BP blowout cleanup workers are getting sick

Posted on Jul 09, 2010 by Susie Collins in Blog, Environment, Media/Videos, Susie Collins

BP blowout cleanup workers are getting sick; Exxon Valdez survivor warns of long term health effects, and an activist chemist currently on site in the Gulf reports on current illnesses in BP cleanup crew.

Click on the video, it will automatically start at the beginning of the section on BP.

As the BP oil spill enters its 78th day, cleanup crews across the Gulf Coast are working to try and remove what they can of the expanding oil slick. And many of them are getting sick doing it. A growing number of cleanup workers have reported suffering flu-like symptoms including headaches, dizziness, fatigue, nausea and problems with memory and concentration. We speak with a Louisiana chemist who testified before Congress to call for greater worker protections and a former general foreman of the cleanup crews of the 1989 Exxon Valdez oil spill.

Interviewed:

Merle Savage, general foreman of the cleanup crews of the 1989 Exxon Valdez oil spill in Alaska’s Prince William Sound.

Wilma Subra, chemist and president of Subra Company. She provides technical assistance to community groups on environmental issues and to the Louisiana Environmental Action Network.

Click here for rush transcript.

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Tags: Air, Chemicals, Environment, Environmental Illness, Pollution, Toxic, Video

Gulf Coast: Grab your respirators!

Posted on Jul 04, 2010 by Susie Collins in Blog, Environment, Media/Videos, Susie Collins

3M #4279 Organic Vapour/Inorganic and Acid Gas/Ammonia/Particulate Respirator

RT America reports on health problems in the Gulf caused by chemical fumes from crude oil and dispersant originating from BP oil well blowout. Don’t miss reference to the Exxon Valdez spill and the analogy to 9/11.

6/30–What can go wrong will go wrong. Such is the case for the Gulf Coast and the unending saga of the BP oil spill that’s now in its eleventh week. What’s wrong now is this: winds from Hurricane Alex are pushing tar balls as large as apples onto Gulf Coast beaches. This has stopped cleanup efforts momentarily and even undone some of the spill control. As one marine scientist put it: “We lost all the progress we made.” But the winds picking up are a giant concern for something else.

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Tags: Air, Children's Health, Environment, Environmental Illness, Pollution, Products, Toxic, Video

Kindra Arnesen speaks out on lack of respirators for oil well blowout “clean up” crew

Posted on Jun 30, 2010 by Susie Collins in Blog, Environment, Susie Collins

Kindra Arnesen, whose husband was made ill during his work on “clean up” efforts in the gulf, speaks out about harsh realities in the impact zone.

On Monday I blogged about a timeline of health horrors caused by the BP oil well blow out. In that post, I told you about a commercial fisherman’s wife, Kindra Arnesen, who broke the silence about her husband’s deteriorating health since he worked on clean up efforts in the Gulf.

Above is a talk Kindra gave at the Gulf Emergency Summit in New Orleans on June 19.

Kindra Arnesen, a young mother of two 8 and 5 year-old children, and the wife of a commercial fisherman in Louisiana, became extremely concerned about the lack of progress of the relief operations of the BP oil disaster in the Gulf of Mexico. She had the opportunity to investigate on the spot by participating in a number of meetings with authorities, and in on-site “clean-up” visits. She vividly and powerfully describes, at the Gulf Emergency Summit in New Orleans, the harsh reality of what’s really going in the area – and the need to prepare for evacuation of populations.

You’ll be especially interested in Kindra’s explanation about why workers are not given respirators. From the transcript:

“I’m gonna go into the health issues for a moment, if you don’t mind. I sat through endless hours of meetings with BP’s safety officers. I sat through an hour and 45 minute meeting with the Coast Guard Safety Officer, both in the Homeland Incident Command Post, as well as a gentleman from OSHA.

“In order to obtain a respirator for our responders — now this isn’t just commercial fishermen — I’m talking about Coast Guard members, all responders, people off the street, everybody involved.

“Number 1: They have to fill out an OSHA questionnaire. Number 2: They have to have a physical evaluation by a medical professional.

“But, EPA is doing air monitoring. Everything’s OK. It’s great. Yeah, imagine that.

“At any rate, there is in fact some Act somewhere in OSHA’s law, that says that volunteers have a right to wear a volunteer respirator. But, as we all know, BP is taking over our Gulf. BP rules right now, our Gulf, I mean… Bottom line, that’s who’s in charge of the situation.

“They couldn’t even run their own company and they are in charge of this response! I’m totally appalled!

“They can’t wear a volunteer respirator because if they’re not properly trained… BP’s rules are, they have to be properly trained in order to wear a respirator. Now, BP said that they will provide the training and they will provide a respirator. But, everything’s OK! So, they don’t need to be trained and they don’t need a respirator. And as far as the right to wear volunteer respiration? Guess what? If you don’t follow BP’s rules, you don’t have a job. And that’s what they told me.”

Click here to read full transcript.

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Tags: Air, Chemicals, Environment, Environmental Illness, EPA, Pollution, Toxic, Video, Work

A timeline of health horrors caused by the BP oil well blow out

Posted on Jun 28, 2010 by Susie Collins in Blog, Environment, MCS, Susie Collins, Worker's Rights

Clean up workers are already visiting their doctors with symptoms of Multiple Chemical Sensitivity.

A still from the BP oil well blow out live cam taken June 28.

Have you been as crazed as I’ve been watching the images of people without respirators working on the so-called “clean up” in the Gulf? We all knew it was only a matter of time before cases of Multiple Chemical Sensitivity were reported. Take a look at the timeline: reports of MCS started fairly soon after the blow out.

5/03: MSNBC reports that the oil spill has little impact on human health: gunk spreading across Gulf a disaster for ecosystem, but not the public. Yeah, right.

5/23: Gina Solomon at the Natural Resources Defense Council Staff Blog, called Switchboard, reports Oil Spill Clean-Up Workers Getting Sick.

5/27: The Washington Post reports that illnesses among workers highlight concerns about health risks of oil cleanup.

6/03: CNN reports on a gutsy fisherman’s wife who breaks the silence about her husband’s deteriorating health since he worked on clean up efforts in the Gulf. “After attending a lecture by Rikki Ott [sic], a toxicologist who’s worked with families affected by the Exxon Valdez oil spill in Alaska, [fisherman's wife Kindra] Arnesen decided to organize other wives to ask questions about the safety of working near the oil.” (See next entry for more info on Riki Ott.) Here’s the CNN vid about Kindra and her husband:

Here’s a couple of asides from our Timeline– Here’s Riki Ott in the documentary film Black Wave about the Exxon Valdez spill:

Here’s more from Riki Ott on 20 years after the Exxon Valdez spill:

Back to our current disaster:

6/03: The Huffington Post reports Gulf Oil Spill Sickness: Cleanup Workers Experience Health Problems, Complain Of Flulike Symptoms.

6/07: I contacted Alison Johnson, author of Amputated Lives: Coping with Chemical Sensitivity, a book about the development of chemical sensitivity in Exxon Valdez cleanup workers, Gulf War veterans, 9/11 First Responders, and FEMA trailer residents. I spoke to Alison on the phone and she expressed concern for the people in the Gulf region that had lived through the toxic soup of hurricane Katrina, including the toxic FEMA trailers, and were now experiencing the fumes from this BP disaster. Given that MCS can be initiated by repeated exposures to toxic chemicals, people in the region should take note of Alison’s concern.

6/08: Ariel Schwartz at Fast Company warns clean up crews to Read This Before You Volunteer to Clean Up the BP Oil Disaster.

Merle Savage has a wheezy, guttural smoker’s cough. But the 71-year-old former Alaska resident and author of Silence in the Sound never smoked a day in her life. She did, however, spend four months as a general foreman during the Exxon Valdez oil spill recovery project in 1989. And she has a message for anyone working at the BP oil disaster sites: “You’ve got to use your common sense. Breathing crude oil is toxic.”

6/11: The Raw Story reports that a human rights group says BP is discouraging crews from using respirators. “BP’s logic seems to be that if the oil cleanup doesn’t look dangerous then it must not be. The oil company has told workers not to wear respirators because it’s bad for public relations, according to one human rights group.” [Emphasis added.]

AND HERE’S THE REPORT WE KNEW WAS COMING:

6/15: Janet Kwak at WOAI TV reports that a mysterious illness plagues Gulf oil disaster workers. Clean up workers are visiting their doctors with symptoms of Toxicant-Induced Loss of Tolerance or TILT, which is another name for Multiple Chemical Sensitivity.

“What makes it challenging is that patients show up with non-specific symptoms. Headaches, fatigue, problems with memory and concentration, upset stomach,” lists Dr. Claudia Miller at UT Health Science Center.

The illness is called “TILT,” or Toxicant-Induced Loss of Tolerance. Patients lose tolerance to household products, medication, or even food after being exposed to chemicals, like burning oil, toxic fumes, or dispersants from the spill.

“Things like diesel fuel, exposure to fragrances, cleaning agents that never bothered them before suddenly bother them,” adds Dr. Miller.

6/18: Politics AP reports BP’s records on ill workers tell only part of the story.

This is about the time I discover the Louisiana Environmental Action Network report on the Health Impacts Associated with Dispersants and Louisiana Sweet Crude. I felt from the beginning of the disaster that the dispersant Corexit was going to cause as much if not more damage to people, animals and the environment as the crude oil. Take a look at the lists on that page for health impacts of both the dispersant and the oil.

And yesterday I found a report in the New York Times about how Cleanup Hiring Feeds Frustration in Fishing Town. Don’t you just love how BP has managed to destroy the environment, livelihoods and probably the health of most workers and many others in the affected regions while at the same time remaining the main employer with “clean up” efforts?

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Tags: Air, Environment, EPA, Pollution, Products, Toxic, Video, Work

CNN investigative report Toxic America with Dr. Sanjay Gupta to rebroadcast tonight and tomorrow

Posted on Jun 05, 2010 by Susie Collins in Blog, Environment, Government Regulation, Media/Videos, Products, Susie Collins

The two-part CNN investigation “Toxic America” with Dr. Sanjay Gupta will rebroadcast tonight and tomorrow night, Sat & Sun, June 5 & 6, at 8 p.m. Eastern Standard Time. Check listings in your area to confirm times. Don’t miss it!

I was hesitant to recommend the CNN special Toxic America with Dr. Sanjay Gupta until I saw the first airing. It’s pretty good actually, although if you look at it through the lens of Multiple Chemical Sensitivity you may feel that it falls short in many areas. Still, it’s heartening to see this topic and type of investigative reporting on mainstream media. Dr. Gupta does a good job of presenting the problems of toxic chemicals in our environment and our homes, and he shows genuine concern, repeating over and over the fact that out of the 80,000 chemicals put into consumer goods, only 200 have been tested for safety.

Click here for dates and times of ONLINE replays June 7, 8, & 9.

Also, for those of you so inclined, CNN is inviting you to “Share Your Story” through video or photos:

Put yourself on video and document conditions in your area, or take photos of what’s around you. Tell us what industrial or chemical pollution may be contributing to health problems for you and those you love, and be sure not to put yourself in a dangerous situation.

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Tags: Air, Asthma, Children's Health, Environment, EPA, Home, Indoor Pollution, Policy, Products, Research, Sick Building, Toxic, Video

Multiple Chemical Sensitivity again featured on popular TV show in Spain

Posted on May 15, 2010 by Susie Collins in Blog, Eva Caballé, MCS, Media/Videos

Here’s another Multiple Chemical Sensitivity report done by Telecinco, one of the most important national TV channels in Spain. This report includes English subtitles.

By contributor Eva Caballé, Spain.

A few days ago, I shared with you the video of a report about Multiple Chemical Sensitivity featured on Telecinco, one of the most important national TV channels in Spain. The report aired during the news. It was in Spanish and some of you asked me if there would be an English version.

Last weekend, a longer version of this report was aired and will be repeated every day until next Sunday. I decided to add subtitles in English to this longer version because it’s even better than the first one. During the video, you can see Dr. Ramón Orriols explaining his study “Brain dysfunction in Multiple Chemical Sensitivity.”

I want to share with all of you the video in Spanish with English subtitles. And I want to thank Susie Collins for her corrections. I hope you like it!

Hugs,
Eva

Here’s the transcript:

MCS TV REPORT

Telecinco: If we do a blood test, we realize that more than 200 chemical substances are present in our body. It’s impossible to live without toxics in a city. There are chemical substances in our shampoos, cosmetics, perfumes, air fresheners and in the cleaning products that hospitals, public transport and malls use. There are chemicals everywhere threatening the health of people with Multiple Chemical Sensitivity. Here lives a 37-year-old woman who has lived isolated for three years because of her MCS. If she smells a perfume, she suffocates. Living isolated without having contact with anybody is the only choice she has in order to survive. The world is toxic for her.

Eva Caballé: Hello, my name is Eva Caballé. I’m an economist from Barcelona and I’ve lived with Multiple Chemical Sensitivity for four years. My husband, David, is my contact with the outside world.

Telecinco: David has recorded the images because nobody can come into their house because it would be too dangerous for her.

David Palma: This is our main door and it’s sealed to avoid odors. We have several air purifiers in strategic places. For example, this one at the main door and this other that controls the door of Eva’s room.

Eva Caballé: When I’m exposed to any chemical product, my first symptom is that I can’t breathe. After the dyspnea, I have tachycardia, my skin burns and I have extreme fatigue and my legs become paralyzed.

Telecinco: They have already spent 30.000€ to adapt their house to MCS. She has lived with Multiple Chemical Sensitivity for four years and she will suffer it the rest of her life.

David Palma: The furniture is made of stainless steel. We had to throw out our wood furniture because they emitted toxic VOCs (volatile organic compounds).

Telecinco: David has to take a bath when he comes home and he follows the same daily routine for Eva in order not to poison her.

David Palma: This is a water filter. We use these ecological and perfume free products. Our toothbrush is made of natural bristles instead of nylon bristles. Our shower head has a carbon cartridge inside to filter the water. We use these salts to clean our teeth. We had to block the air vent to avoid the chemicals that our neighbors use (shampoos, deodorants, laundry detergent, etc.).

Eva Caballé: I developed MCS because of an air freshener that they started to use in the office where I used to work. One day, when I came into the office, I suffocated. In that moment this nightmare started.

Telecinco: Not only chemicals are a problem for her. She’s also sensitive to sounds, changes of pressure, vibrations and lights.

David Palma: This is the cable of our router. We don’t have WiFi to avoid electromagnetic radiation.

Dr. Ramón Orriols: All their senses are ultrasensitive. MCS sufferers have such an exaggerated response that makes all unbearable for them.

Telecinco: They have converted their home into a bunker to survive. Eva can’t even go to hospital in an emergency or take an ambulance.

David Palma: Doctors can’t make house calls because MCS is not recognized in Spain. There are no hospital protocols for this illness. If she takes an ambulance, she will be exposed to disinfectants and cleaners, perfumes used by other patients or medical staff. All these chemical products could possibly cause a medical crisis and she could even loose her life.

Telecinco: David seals the kitchen door every time he cooks. Eva doesn’t tolerate preservatives and artificial colourings. She can only eat five different foods.

David Palma: Lettuce, carrots, veal, egg and corn. We buy organic corn and we make our own flour. We are waiting until her health improves to reintroduce lentils, which she can no longer tolerate because of food poisoning that she suffered a few months ago.

Telecinco: But most frustrating for them is that MCS is not recognized as an illness. Eva Caballé spent two years and one month to find the right diagnosis after she visited more than 22 doctors who labeled her as delicate.

David Palma: I think that MCS is not recognized because of economic interests. The chemical and pharmaceutical industries don’t want it known that normal everyday chemicals, like shaving foam or nappies, are toxic. They are afraid to have people realize that normal everyday chemicals cause diseases.

Dr. Ramón Orriols: The real truth is that MCS exists. The MCS sufferers exist and we must give them a solution.

Telecinco: Dr. Orriols is a pneumologist who has studied the brain of MCS patients and his study has proved that MCS is a real illness.

Dr. Ramón Orriols: The important thing is that this illuminated part disappears right here. This doesn’t happen with healthy people. MCS suffers have an alteration just in this center which controls the olfactory stimulus.

David Palma: And here is where Eva lives.

Telecinco: Eva is totally disabled because of MCS, CFS, Fibromyalgia and Hashimoto’s Thyroiditis. Her body is broken but her mind is very active. She authors a blog where she spreads information about MCS and she has written a book that she can’t even read.

Eva Caballé: I can’t touch my book because the paper and the ink are toxic for me and they would cause me a crisis. This is the reason why my book is wrapped.

David Palma: She worked, she went daily to the gym, and we used to spend the weekends going to rock concerts and we also had a rock band. We had an active and full life.

Telecinco: Do you feel lonely any time?

David Palma: No, because I’m with her.

Telecinco: They will keep on fighting together until MCS is recognized as an illness.

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Tags: Chemicals, Environment, Fragrance, Home, MCS, Multiple Chemical Sensitivity, Products, Toxic, Video

Multiple Chemical Sensitivity: The importance of reducing the toxic load

Posted on May 07, 2010 by Susie Collins in Blog, Eva Caballé, MCS, Media/Videos

I didn’t know that air fresheners and laundry softeners have carcinogenic ingredients. The manufacturers hide all this information because they want us to be unsuspecting consumers who buy products without questioning the ingredients. But there are natural and healthier choices, and in most of the cases they aren’t more expensive.

By contributor Eva Caballé, Spain.

(Editor’s Note: Please help me welcome Eva Caballé as a regular contributor at The Canary Report! Eva’s story about her life with Multiple Chemical Sensitivity has been featured on TCR many times since last summer, and she started guestblogging here in February. I asked her to come join us as a regular contributor, and to my delight she’s said yes! She’ll blog here at The Canary Report on Multiple Chemical Sensitivity, disability rights, social justice, the state of MCS recognition in Spain, and give you tips about living a nontoxic life. You can read her full bio here. Eva makes her contributor’s debut with a video on the importance of reducing the toxic load in your life. The video was first aired at a conference in Spain on healthy cosmetics. Welcome, Eva! Aloha, Susie)

Eva Caballé

Hello, my name is Eva Caballé. I’m an economist from Barcelona, Spain, and I’ve lived with Multiple Chemical Sensitivity for four years, although I was diagnosed only two years ago. I write NO FUN, a Spanish blog about MCS and Chronic Fatigue Syndrome, with information and advice for people who are sick or who want to live a healthier life free of toxics. My blog includes an English section. And I have written a book Desaparecida: Una vida rota por la Sensibilidad Química Múltiple (Missing: A life broken by Multiple Chemical Sensitivity) that was published in Spanish last year by the publisher El Viejo Topo .

First of all, I want to thank Silvia Ferrer for inviting me to this conference about healthy cosmetic to talk about MCS, although I have had to record my conference in this video, because my illness doesn’t allow me to leave my house.

Maybe some of you haven’t heard about Multiple Chemical Sensitivity. MCS is an acquired chronic illness which manifests with multisystemic symptoms as a reaction to very small exposures to toxic chemical products, meaning normal everyday chemicals but unnecessary ones like perfumes, air fresheners and laundry softeners.

MCS is a syndrome with four grades of severity, so not all of us who are sick suffer the same level of disability and isolation. Unfortunately, I have the highest severity and because of MCS I have developed other illnesses that make me live completely isolated, without leaving my house, and right now, not even leaving my bed.

The symptoms are chronic and they can become acute when we are exposed to chemical products. Symptoms are different depending on the sufferer, and in my case include dyspnea, tachycardia, dizziness and extreme fatigue. This is the reason why we must avoid contact with any chemical product.

There are two ways of developing MCS: from one single exposure to toxics at a high dose (fumigation, for example) or by many exposures to small amounts over the years, which is my case.

Over the years, our body accumulates chemical substances which circulate in our environment without any controls, in the food we eat, in the water we drink, in the air we breathe, in our beauty products, etc., until the toxic load is unbearable and we end up getting sick, which according to our genetic make-up, it could end up being MCS or other environmental illness like cancer, asthma, and allergies.

If you start noticing unbearable chemicals which you did not notice before or you stop tolerating alcohol or some food, you may be developing MCS. If a perfume gives you headache, if some chemicals give you dizziness or nausea, you may be part of the 12% of people who have chemical sensitivities in a mild degree.

Since my MCS started, before I got the right diagnosis, I had to make changes at home, because the laundry detergent, the toothpaste or for example the shower gel suffocated me. My body guided me to eliminate all the products that were intoxicating me. In spite of not knowing the name of my illness, I started to look for alternatives to substitute for all these toxic products. Two years later, when I knew that I had MCS and that I had to avoid all the chemical products, I realized that my body had led me on the right track.

Then I created the blog NO FUN, first of all to spread a video about MCS that I recorded at home for a TV program, and after that I started to share all that I had learned with other people who were sick and anyone who wanted to live a healthier life free of toxics.

I also have allergies since I was a child, but nobody warned me that I was in a risk group to develop MCS. If I was aware of this, I would have changed my habits and I would have used the products that I use now. I also didn’t know that most deodorants are toxic and there are a lot of studies that link some ingredients with breast cancer.

I didn’t know either that air fresheners and laundry softeners have carcinogenic ingredients. The manufacturers hide all this information because they want us to be unsuspecting consumers who buy products without questioning the ingredients. But there are natural and healthier choices, and in most of the cases they aren’t more expensive.

Each day, there are more children with allergies, asthma, with celiac disease, dermatitis, even cancer. MCS is growing rapidly and also affects younger people, even children. This horrifies me and I am ashamed to live in a world where economic interests are put before health, where they let us get sick and then they abandon us with no help.

I decided to write a book with my history in part to denounce all of this, because I don’t want anybody else get sick when this can be avoided. While the health authorities do nothing, everyone has the option to change their way of life, to stop using these toxic products and to start using ecological products, which are respectful to our bodies and the environment.

I only wish that my experience is useful in preventing others from getting ill.

~~~

Eva Caballé blogs at NO FUN.

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Tags: Children's Health, Environment, Environmental Health, Environmental Illness, Fragrance, Healthy Living, MCS, Multiple Chemical Sensitivity, Video