Panel confirms Gulf War Illness caused by toxic chemicals

A congressionally mandated report on Gulf War Illness is released.

Findings of a study just released on Gulf War Illness directly correlate the chemical exposure experienced by soldiers, notably pesticide exposure, to memory and concentration problems, persistent headaches, unexplained fatigue, widespread pain, chronic digestive problems, respiratory symptoms, and skin rashes.

How many of us with Multiple Chemical Sensitivity have stories of being similarly exposed to toxic chemicals resulting in the same chronic symptoms? Do you think anyone will ever mandate a study about us?

WASHINGTON - At least one in four U.S. veterans of the 1991 Gulf War suffers from a multi-symptom illness caused by exposure to toxic chemicals during the conflict, a congressionally mandated report being released Monday found.

For much of the past 17 years, government officials have maintained that these veterans — more than 175,000 out of about 697,000 deployed — are merely suffering the effects of wartime stress, even as more have come forward recently with severe ailments.

“The extensive body of scientific research now available consistently indicates that ‘Gulf War illness’ is real, that it is the result of neurotoxic exposures during Gulf War deployment, and that few veterans have recovered or substantially improved with time,” said the report, being released Monday by a panel of scientists and veterans. A copy was obtained by Cox Newspapers.

Gulf War illness is typically characterized by a combination of memory and concentration problems, persistent headaches, unexplained fatigue and widespread pain. It may also include chronic digestive problems, respiratory symptoms and skin rashes.

Two things the military provided to troops in large quantities to protect them — pesticides and pyridostigmine bromide (PB), aimed at thwarting the effects of nerve gas — are the most likely culprits, the panel found.

[...]

It found that in terms of brain function, exposure to pesticides and the PB pills hurts people’s memory, attention and mood. Some people, it notes, are genetically more susceptible to exposures than others.

[...]

To ward off swarms of sand flies in Kuwait City and the eastern Saudi province of Dhahran, Hardie said trucks would come through at 3 a.m. and spray “clouds” of pesticides.

Fly strips that smelled toxic hung “everywhere,” especially near food. “The pesticide use was far and away (more) than what you’d see in daily life,” he said.

Several soldiers interviewed said they were ordered to dunk their uniforms in the pesticide DEET and to spray pesticide routinely on exposed skin and in their boots to ward off scorpions. Others wore pet flea collars around their ankles.

The federal panel added that it also could not rule out an association between Gulf War illness and the prolonged exposure to oil fires, as well as low-level exposures to nerve agents, injections of many vaccines and combinations of neurotoxic exposures.

Link to full story at Rome News-Tribune, well worth the read.

Photo by Lietmotiv: Oil well fires rage outside Kuwait City in the aftermath of Operation Desert Storm. The wells were set on fire by Iraqi forces before they were ousted from the region by coalition force.

Who’s chirping about Multiple Chemical Sensitivity today?

Earth911 writes about chemical sensitivity when they address the question: Isn’t it more eco-friendly to buy an artificial Christmas tree? Well, they say, it depends on who you ask.

Real or Fake?

The National Christmas Tree Association annually releases this fact sheet to help educate the public. It compares the pros and cons of fake vs. real trees in everything from origin to production to ingredients.

Take a Deep Breath

Nearly 500,000 acres of Christmas trees in the U.S., with each acre providing the daily oxygen requirements of 18 people. When one tree is cut down, three seedlings are planted the following year to replace it making it the ultimate carbon offset. In 2008 alone, an estimated 40-45 million Christmas trees were planted in North America.

On the flip side, those trees are often sprayed with pesticides. While fake trees are not depleting resources and can be reused year after year. However, artificial trees contain lead to produce the PVC material in the needles. These trees can off-gas, and can create issues for those who have chemical sensitivities.

The Galway Tent Blog, out of Dublin and dedicated to the topic of incinerators, says “No more incinerators should be approved,” citing “recent research, including that relating to fine and ultrafine particulates, the costs of incineration, together with research investigating nonstandard emissions from incinerators, has demonstrated that the hazards of incineration are greater than previously realised. The accumulated evidence on the health risks of incinerators is simply too strong to ignore and their use cannot be justified now that better, cheaper and far less hazardous methods of waste disposal have become available.” An excerpt from the study’s Executive Summary:

Toxic metals accumulate in the body and have been implicated in a range of emotional and behavioural problems in children including autism, dyslexia, attention deficit and hyperactivity disorder (ADHD), learning difficulties, and delinquency, and in problems in adults including violence, dementia, depression and Parkinson’s disease. Increased rates of autism and learning disabilities have been noted to occur around sites that release mercury into the environment. Toxic metals are universally present in incinerator emissions and present in high concentrations in the fly ash.

Susceptibility to chemical pollutants varies, depending on genetic and acquired factors, with the maximum impact being on the foetus. Acute exposure can lead to sensitisation of some individuals, leaving them with lifelong low dose chemical sensitivity.

Rincon Hill San Francisco, a community blog, announces a neighborhood meeting and adds, “Individuals with severe allergies, environmental illness, multiple chemical sensitivity or related disabilities should call the City Accessibility Hotline at 415-554-8925 to discuss meeting accessibility.” Bravo!

Who’s chirping about Multiple Chemical Sensitivity today?

Disabilities columnist Daniel J. Vance at Rocklin and Roseville Today writes on “Understanding Multiple Chemical Sensitivity Syndrome.” Although his intent is in the right place, he misses the mark by listing only classic allergy symptoms like runny nose and runny eyes, and skipping the more problematic non-allergy symptoms such as loss of cognitive ability and prolonged fatigue after exposure. I don’t know if reports like this help or hurt our cause.

And the story that never dies: The Morning Call reports “Couple asks South Whitehall to allow ‘bubble house’: Pair appealing judge’s order that haven be torn down.” The couple who built a modular housing unit known as ”the bubble” in their backyard, as a safe place for the wife who has Multiple Chemical Sensitivity, has asked the township to make an exception to its zoning ordinance and allow the building, despite a Lehigh County Judge’s order to tear down the structure.

Who’s chirping about Multiple Chemical Sensitivity today?

The Southeast Texas Record reports that a “Worker claims chemical fumes exposure led to asthma and an extreme sensitivity to common household chemical fumes.”

Gregory Scott Johnson has filed suit against Arkema, alleging a chemical in new equipment the company installed caused him to develop asthma and an extreme sensitivity to common household chemical fumes. [...] Arkema installed new equipment in the Waco bottling facility, the suit states. Part of the equipment Arkema installed contained Certincoat, a glass coating made from monobutylin trichloride, according to the complaint.

In July 2007, a timing malfunction occurred on the line, and Johnson claims he was called in to repair the issue. The work took several hours, and by the time Johnson was finished, he was short of breath and experiencing chest pain, according to the complaint. Another timing malfunction occurred on July 15, 2007, and Johnson was again called in, the suit states. Johnson alleges he again experienced the same symptoms. Johnson went to a doctor where he was informed his lungs were scarred, according to the complaint.

“He was diagnosed with occupational asthma and is extremely sensitive to common household chemical fumes,” the suit states. “He had been assessed as having a 25 percent whole-body impairment.”

Religious Cause posts a story about a church that ministers to people with Multiple Chemical Sensitivity. The church has been denied a special use permit and variance that it requested to build a religious center. In “Michigan Court Upholds Zoning Denial; Defines Church,” it’s pointed out that the court ruled the Ecclesiastical non-profit corporation was indeed a church, but the group still could not construct a building in the chosen location.

In Great Lakes Society v. Georgetown Charter Township, (MI Ct. App., Oct. 30, 2008), the Michigan Court of Appeals upheld the Georgetown Zoning Board of Appeals’ denial of an application for a special use permit and a variance that had been requested for a religious center. The court first concluded that the proposed building was a “church” for zoning purposes and that the trial court had applied an incorrect standard in holding otherwise. Great Lakes Society ministers to persons who have chemical sensitivities to common environmental pollutants. It also has a phone book listing under “Nutritionists”. Its proposed building would contain space for a number of activities related to its ministry. The appellate court held that it is sufficient that the building is primarily used for public worship and reasonably closely related activities. The Court of Appeals went on to find that the Zoning Board of Appeals and the Township “properly decided not to grant a variance with respect to the proposed building location and that they did not violate the RLUIPA or any constitutional guarantees by making that decision.”

Synthetic chemical carpet cleaning products are not safe

Safe housing is a huge problem for people with Multiple Chemical Sensitivity. I received a distressing email from Ruth this evening. Ruth is one of our flock, who lives in an apartment building and earlier in the week was looking for alternative nontoxic air fresheners and carpet cleaning products to suggest to her landlady for use in the common areas. I wrote a post about it on Monday.

Ruth had been assured by her landlady that the commercial carpet cleaners, who were scheduled to come clean the carpets in the common areas, would not use fragrance in their products. But evidently that didn’t mean they were going to use eco-friendly nontoxic products. Ruth returned to her apartment building this evening to find the place a mess of toxic fumes from the products they used to clean the carpets. She felt sick and stressed, retiring to her apartment, which luckily is a safe place for her.

This is another story of how people just do not understand that the chemicals in commercial carpet cleaning products are highly toxic. It’s so hard for those of us with Multiple Chemical Sensitivity to be heard! And the fact is, while people who are not as sensitive as we are may not feel pronounced symptoms to exposure, they are in fact also being exposed to toxic chemicals.

Look at what CHEC Healthe House, a site dedicated to environmental health risks affecting children, has to say about carpet cleaners:

Like other cleaners, carpet cleaners may contain toxic ingredients, some of which are not listed on labels because they are considered “proprietary” or “trade secrets”.

Some carpet cleaners–especially spot removers–can be particularly dangerous, because they contain chemical solvents similar to those used by dry cleaners. These chemicals dissolve dirt without soap and water, but give off strong odors. Other potentially problematic ingredients in carpet cleaners include other compounds that produce lots of fumes (like formaldehyde), acids, pesticides, disinfectants, lye (sodium hydroxide), fragrances and many others.

Fabric and carpet stain repellents or “guards” may contain plastics and other potentially dangerous ingredients. The key ingredient in 3M’s popular Scotchgard® line of products, perfluoro-octane sulfonate (PFOS), was once portrayed as chemically inert, but recent research shows that it is a persistent organic pollutant (POP). PFOS, a suspected hormone disruptor, accumulates in the environment and the tissue of animals and humans. Despite ample evidence of PFOS’s persistence, 3M kept it on the market for 40 years. In spring 2000, 3M announced it would phase out PFOS products by the year 2002. The safety of another perfluorinated compound, perfluorooctanoic acid (PFOA), the main ingredient in Teflon®, which is used to coat non-stick pans and in fabric protectors, is currently under investigation.

During application and while drying, the chemicals in carpet cleaners and protectors evaporate and may concentrate in the air, causing indoor air pollution. This is more likely if the room is not well ventilated, the weather is hot and humid or the room is damp. Indoor air pollution can cause headaches, irritation to eyes, nose and lungs, asthma attacks, congestion, sneezing, coughing, fatigue, nausea and other symptoms.

There is some speculation that there is a link between carpet cleaners and Kawasaki Disease, though there is limited evidence to support this. Long-term exposures may increase the risks for chronic diseases, such as heart disease and cancer, depending on the chemicals involved.

Carpet shampoos usually leave a sticky residue on carpet fibers. The residue is usually hard to see or feel–though it can make carpets feel rougher and you may be able to smell it. Not only does the residue attract and latch onto dirt, but children, who crawl and play on carpets, can inhale these residues and get them on their hands, which often go into their mouths.

Dry shampoos, powders and foams may also linger on carpet fibers. These products generally contain solvents and detergents that must be applied for a specific period of time, then vacuumed to remove the cleaning product. A residue may be left behind or the product may sink deep enough into carpets to avoid being pulled out by the vacuum cleaner. Powders or dusts are easily inhaled and may irritate airways and cause asthma attacks. In fact, anti-dust-mite carpet treatments sometimes contain tannic acid or benzyl benzoate, both of which are skin, eye and respiratory irritants. Deodorizing powders often contain fragrances that irritate asthmatic lungs as well.

To remove shampoo residue from your carpet, see How to Keep Carpets Clean without Dangerous Chemicals. CHEC recommends that children stay out of the house for at least four hours after carpets have been cleaned by any method. This can help reduce the risk of Kawasaki Disease, which may be linked to carpet cleaning.

Dangerous Chemicals Found in Some Carpet Cleaners

Solvents
Butoxyethanol and other glycol ethers
Tetrachloroethylene
Perchloroethylene

Acids and other corrosive chemicals
Hydroxyacetic acid
Hydrofluoric acid
Nitrilotriacetic acid
Sodium hydroxide
Sodium carbonate

Mildewcides and Disinfectants
Tributyl tin
Formaldehyde
Phenol

Other chemicals
Butane, propane and isobutanes (aerosol propellants)
Dibutyl phthalate
Nonylphenol ethoxylate (surfactant)
Octylphenol ethoxylate (surfactant)

You can find out if a carpet cleaning product you use or are considering contains any of these ingredients on the Household Products Database, produced by the National Institutes of Health. You can also search by ingredient.

Ruth, We all hope you are doing okay. Keep us posted. Aloha, Susie

Photo by Pomme Granny.

Who’s chirping about Multiple Chemical Sensitivity today?

Thomas Coffman at the Albert Lea Tribune writes about “You might discover your own migraine cure.” He says, “The majority of migraines involve food allergies, such as wheat and chemical sensitivities. [...] Find out if it’s a food allergy, a chemical sensitivity or whatever. Then start reducing them systematically. You may discover your own cure on your own.”

The Canary’s big red flag went up with this one. Owing Mills Times out of Maryland reports “Hospital testing scents in new lobby” :

The hospital will test several aromas in the lobby in the coming weeks, Wexler said.

“The concept is to eliminate the typical cleaning odor of hospitals to reduce the stress of those waiting,” he said.

Brian Sanderoff, pharmacist and CEO of Your Prescription for Health, a natural pharmacy on Dolfield Road in Owings Mills, praised the idea of using aromatherapy in a hospital lobby, citing lavender, sandalwood, bergamot and clary sage as aromas with calming properties.

“Because the nerves from the nose go directly into the brain, aromas are a direct way of affecting many aspects of brain function including emotion and mood,” said Sanderoff, adding that sensitivities to the chemical compounds of aromas and quality of essential oils used to produce aromas are two concerns with aromatherapy.

Bay of Plenty Times reports that residents in a New Zealand town say “We don’t want toxic city” :

Bay residents, including the mother of a teen left totally debilitated by toxic sprays, have urged Tauranga City Council to rethink the city’s increasing dependence on chemical weed control.

Councillors this week heard Avenues resident Robyn Board describe the impact that agri-chemicals had had on her 18-year-old son Michael.

She was one of seven speakers opposed to council’s draft agri-chemical policy, which said use of some toxic agri-chemicals was necessary to help control weeds.

Mrs Board’s son collapsed five years ago after the family’s rural neighbour sprayed a mixture of Roundup and the hormone-based Gardoprim in high winds.

The Board family left their home that day, never to return.

“He is still virtually housebound because he is too debilitated to go out and be a regular 18-year-old,” Mrs Board said.

Mrs Board, who herself had been diagnosed with multiple chemical sensitivity and ME (also known as chronic fatigue syndrome) precipitated by chemical poisoning, said the sprays had a profound effect on her son.

Who’s chirping about Multiple Chemical Sensitivity today?

On the election front:

Lou Cheese, over at Living w/ Mulitple Chemical Sensitivity, braved the Cleveland air to document the Obama rally today. As his photo at left shows: “I packed my bag with extra batteries for the camera, two respirators, and a note from the doctor explaining the requirement for respirator use in public areas,” he says. “Just what every guy needs.” He posted three updates, at 11:00 a.m.,  3:00 p.m., and 7:00 p.m. I’ve really enjoyed his perspectives on the presidential race, including his fears of being arrested by the Secret Service at various rallies for being a terrorist because of wearing a respirator!

GreenMuze put together a simple guide to a green voting experience, what they call “Your Eco-Voting Etiquette Guide.” The guide talks about how it’s not enough to just be voting green, you should act like a greenie at the polling place, too. I was delighted to see they recommend a fragrance-free experience. Along with recommending carpooling, eco-friendly water containers, and organic cotton t-shirts, they also say this:

Go scent free.

For many people voting is a social occasion, you see your neighbours, chat with friends, and even perhaps flirt with someone new in the line-ups, but do everyone a favour and go scent free. Increasingly, people are having more chemical sensitivities to perfumes, hairsprays, scented creams and even strong smelling laundry detergents and fabric softeners can be a serious health trigger for many individuals.

The Body Burden reports that everyone alive today carries within her or his body at least 700 contaminants, most of which have not been well studied. Why add more? Going chemical free will reduce the planetary toxic load, is better for your health and much better for the health of those around you. It is time we consider chemical perfumes, hairsprays, shampoos, etc. as equally as noxious as cigarette smoke.

GreenMuze also says “Obama is certainly not the eco-saviour that Al Gore would have been, but he is much better than the McCain/Palin ticket and smart enough to stock his cabinet with good green people.” Exactly!

Who’s chirping about Multiple Chemical Sensitivity today?

Glenda at Writing Stories About Real People, an eclectic blog chock full of interesting topics, writes about a tough week with her chemical sensitivity. In her post entitled “Indoor pollution is killing me!” she says:

This week, although I’ve gone as green as possible in my house, we are having a renovation done and after the plumber had come to put in the pipes for the washing machine, I had the worst attack I’ve had in many years. Turns out it was the glue used on the PVC piping. The harsh chemicals took my breath and I had to go outside to breath[e]. We closed off the new laundry room, placed an air filter machine in the living area but I had to retire to my little cubby hole of a room with my own air cleaner which runs day and night, close my door and hibernate.

The Windsor Star talks to Susan Jasper, vice-president of the Myalgic Encephalomyelitis/ Fibromyalgia Society of Alberta (ME/FM), who has fibromyalgia.

Q: How are ME/CFS [Chronic Fatigue Syndrome], fibromyalgia and multiple chemical sensitivity related?

A: They are all distinct, but the reason we lump them together is we think they’re environmentally linked, in the sense that people are affected by their environments more than (with) other conditions. Usually ME/CFS is post-viral, while fibromyalgia is more commonly related to physical trauma, like a motor vehicle accident or a multiple head and neck trauma, and then the pain spreads. Multiple chemical sensitivity can start on its own, for example if you have a history of being in a sick building, where there’s little ventilation and chemicals from the office such as toner or paint. It starts as an exposure problem that generalizes.

MCS America posts an informational flyer on the Quick Environmental Exposure and Assessment Inventory, a standardized questionnaire developed by Dr. Claudia Miller that assists researchers and clinicians when evaluating patients for chemical sensitivity.  It measures exposure levels and symptom severity and estimates the life impact of a chemical injury.

Who’s chirping about Multiple Chemical Sensitivity today?

Melody at Little Home Blessings writes about the importance of safe housing for people with Multiple Chemical Sensitivity.

Four years ago I couldn’t get out of bed most days. I was on oxygen regularly. It wasn’t uncommon for me to be too weak to speak or raise a glass to my lips. I suffered neurological impairment to the point that I couldn’t remember how to spell my own child’s name, and couldn’t make my hands cooperate in zipping a zipper.

I still have my limitations and I still have to be very cautious, but after 2 ½ years of living in a healing home, I’m now able to be out and about in public, to care for my children and generallylead a productive and satisfying life.

Melody’s post includes an excellent vision of how to create a healing home.

Catherine at Breathez writes about the connections between her Celiac Disease and Multiple Chemical Sensitivity.

In my case, trying to determine which one came first is like asking the proverbial question of which came first, the chicken or the egg. I may have had symptoms of MCS before those of celiac, but years of undiagnosed celiac caused permanent damage to my adrenal glands, which in turn caused more chemical injury–or did the chemical injury cause some of the adrenal damage and thus aggravate the celiac? These are questions I quit asking long ago, because there were no clear answers, and knowing wouldn’t change how things were anyway.

Catherine at Sacredseed’s Weblog was diagnosed with MCS in the winter of 2007, and writes about the power of ritual in her post “Living the Demetrian Wheel, reality strikes.”

October 15^th is the anniversary of the day I went into the Emergency Room at Disneyland in anaphylactic shock, which is a much longer story that does not need to be told here. That event triggered the toxins that had been stewing in my body from an exposure to Formaldehyde about 18 months earlier. The anaphylaxis pushed me over into full blown Multiple Chemical Sensitivity – the chronic illness I now live with. This year my business partner Jamie and I created a ritual to help me mourn some of what I had lost through that experience and celebrate some of what I have gained. We performed the ritual on Friday October 17^th at the Berkeley Marina with a handful of other friends who shared in letting go some of their grief and celebrating some of their joys. It was a quiet and poignant evening.

Now the wheel turns and the Wiccan in me prepares for Samhain this weekend. More honoring of grief and joy at the end of the year. Somehow it all fits together. And just behind me, supporting and offering comfort and understanding, I can feel Demeter’s presence. Sister, Lover, Mother, Goddess, Cohort in Crime, and Friend.

Who’s chirping about Multiple Chemical Sensitivity today?

The Chronicle Telegram has a story on a medical center employee who is suing the hospital for moving her into an office that aggravated her asthma. She also has Multiple Chemical Sensitivity. The lawsuit states the office didn’t have proper ventilation and had a high level of chemicals, which caused the worker, Jacquelyn Palmer, respiratory distress, burning eyes, nose, throat and skin, swelling of lips and tongue and other ailments. Palmer accuses the hospital of discrimination, retaliation, failure to provide a safe workplace and inflicting emotional distress.

Catherine (one of our flock), at Mormon Bloggers Speak Out, writes today about Chemical Sensitivity and Earth Stewardship, explaining the connection between her chemical sensitivity and her interest in the environmental movement, what she says is “a logical step for me to take, from protecting my own personal environment to seeking protection for the larger environment of the world.” She blogs:

I can’t reverse the chemical damage that has already occurred in my body, but I can become militant in preventing it from happening to others. Thus my interest in and association with the environmental movement. I believe that God created the earth for our use, but charged us with the responsibility to be wise stewards. If we allow the earth to be poisoned with chemicals, we do so at our own peril. As a chemically injured person, I am a living witness of the consequences of poor stewardship.

Who’s chirping about Multiple Chemical Sensitivity today?

At Zona pellucida… blinded by the light, Dana writes about developing a chemical sensitivity to disposable menstural pads and pantyliners when she was a teenager. Her solution? All-natural reusable cotton or flannel menstrual pads. “The story has a happy ending: Lunapads saved my life!” Dana says. “I highly recommend them.” Lunapads has a great blog, too!

Organic Authority picked up the story of Elizabeth Feudale-Bowes, who was diagnosed several years ago with environmental illness and has been ordered by a judge to remove the non-toxic back yard structure in which she spends most of her life. The Canary Report has been following this story, link here for background.

The World, out of Coos Bay, Oregon, reports on a couple that wants to buy and transplant a condemned house about ready to fall off a cliff so that the husband, who has Multiple Chemical Sensitivity, can live in an old, chemical-free house. It’s a pretty creative proposal and if city officials can figure out how to make it work, it’s a win-win for everyone involved.

Author Mattilda Bernstein Sycamore at NOBODY PASSES, darling, blogs in a post called “Thoughts on the vocabulary of disability” about the interconnections between MCS, fibromyalgia, and Chronic Fatigue Syndrome. She does a great riff on acronyms, but also speaks to the more serious topic of living with multiple disabilities.

Who’s chirping about Multiple Chemical Sensitivity today?

Bancroft This Week reports on Peter Haynes who’s been living in a tent since mid September due to a severe case of Multiple Chemical Sensitivity. He’s saved only by a surgical mask that filters the air he breathes. Haynes was diagnosed and treated at Women’s College Hospital in Toronto.

Lee at Health Advice for Women talks about the ways in which her diet affects her Multiple Chemical Sensitivity in “MCS: Gluten & Dairy Free.”

Leif Grunseth, certified neuromuscular therapist, re-posts “Personal Care Products: Picking the Safe Ones,” snitched from sixwise.com.

CFS Warrior blogs about “Interesting Research Updates on CFS/CFIDS” and the role of infections in causing or perpetuating Chronic Fatigue Syndrome as well as carbon monoxide sensitivity being a cause in those with Multiple Chemical Sensitivity combined with light, sound and taste sensitivity.

Poem on living with Multiple Chemical Sensitivity

I have been disabled and isolated by severe MCS (Multiple Chemical Sensitivity) since 1996. This is what it is like for me and hundreds and thousands of others like me around the world. (And many are being added to our ranks daily). — Island Bard

Link

Who’s chirping about Multiple Chemical Sensitivity today?

The blog Little Home Blessings starts a new category today called “The Healing Home.” I’m really happy to have found this blog! It’s a window into a beautiful life of good food, arts and crafts, parenting, home schooling and nontoxic living. Melody writes today:

As many of you know, my children and I were diagnosed with Multiple Chemical Sensitivities, along with a myriad of related ailments, back in 2004. Our path towards a diagnosis was a long one and our search for safe housing, equally long and daunting.

After a year long, desperate search for a suitable home, we decided that our best option was to build what we needed, and thus the Little House project was born.

In July of 2007, we were blessed with the opportunity to expand out tiny home. Work on both the original structure, as well as the addition has been on-going ever since [rafters above].

Healing Through the Eyes of Autism wrote about “Is Autism the New Generation of Multiple Chemical Sensitivities?” Adonya Wong writes, “Until two days ago, I had never heard of Multiple Chemical Sensitivity (MCS).  Wanting to know more about it, I decided to do some light research.” Kudos to Adonya for exploring connections between toxic chemicals in our environment and chronic illness.

Vegan Reader blogs about the woman with MCS who’s been ordered to remove the safe building from her backyard. Mim writes compassionately about how “South Whitehall Township Fails to Love Sick Neighbor, Elizabeth Feudale-Bowes.”

On Monday, Adventures with Multiple Chemical Sensitivities: Tales of the Masked Avenger discussed MCS and the rotation diet in “Rotation Sensation.”

Couple ordered to remove safe room may get reprieve

Town council reconsiders judges’s ruling to remove “bubble,” a safe place for a woman with MCS that she and her husband installed in their back yard.

Good Morning America picked up the story about Elizabeth Feudale-Bowes’s fight to live inside a steel-and-porcelain shed outside her house that serves as a haven for the 52-year-old diagnosed with environmental illness several years ago.

(My problem with the report is the heavy emphasis on Multiple Chemical Sensitivity being an allergy, which it is not. While people with MCS can have allergies, the actual condition of MCS is a reaction to low level poisoning by toxic products. For more information on the difference between allergies and reactions to toxic chemicals, MCS America provides an excellent explanation by Grace Ziem, MD.)

The good news about Feudale-Bowes’s situation with her safe room is that it sounds like the town council is reconsidering the judge’s ruling that Feudale-Bowes must remove the structure because it lacks the proper permits. Click on the video above for more details.

Background and links to previous posts on this story:

AP picked up the story of Elizabeth Feudale-Bowes, the woman with Multiple Chemical Sensitivity in Pensylvania who’s neighbors complained about the porcelain “bubble” room she and her husband installed in their back yard. The Canary Report has been following this story here, here, and here. Neighbors complained that Feudale-Bowes did not follow building permit laws, and a judge agreed, ordering the couple to dismantle the safe room by the end of the month. Says Feudale-Bowes, “If I don’t live like this [in the safe structure], my pain level is so severe that I can’t function, I can’t live, I can’t survive. It’s excruciating.”

Thanks, Ruth!

UPDATE: Good critique on Good Morning America’s coverage at Fibrocop: Striving to Put FACES on Fibromyalgia.

Diving accident triggers Multiple Chemical Sensitivity

A young woman’s diving accident triggers a debilitating case of Multiple Chemical Sensitivity.

Tanya Watters (left with sister Michele) suffered an air embolism plus decompression illness from a botched dive in the Parentian islands. Hyperbaric Oxygen Therapy was necessary as quickly as possible to avoid a permanent brain injury, but she didn’t receive the proper health care until seven days after the dive. Following the HBOT, her condition continued to deteriorate.

A desperate Tanya finally found a doctor in New Orleans who diagnosed that she was suffering from oxygen toxicity. She relocated to the US for six months but almost on arrival she began noticing a chemical sensitivity that she had never experienced before.

“I couldn’t tolerate exhaust fumes, gas cookers, perfume, air fresheners or cleaning products. The more I was exposed to chemicals, the more sensitised I would become and smaller amounts started to affect me.

“Looking back, even if I hadn’t gone to New Orleans it would probably have happened anyway; maybe it would have taken longer.”

Rat poison exposure sent Tanya plummeting to her worst, leaving her virtually bed-bound for two months. She finally decided that she had a reduced chance of chemical exposure if she returned to Donegal.

She returned to the family home in August where her distraught parents, Shaun and Mary, are struggling to come to terms with Tanya’s illness.

“It is only since she came home that we truly understand Tanya’s condition. It is like going through a mourning process. Tanya loved her career and she loved life. She should be out there enjoying this part of her life,” said mum Mary, tears streaming down her face.

Link to full story at the Independent. The subtitle in the paper’s headline says: “A diving accident left high-flying Trinity graduate Tanya Watters with a rare debilitating illness.” I have a problem with MCS being referred to as “rare” because studies are showing more and more that it’s not so rare. But an air embolism triggering MCS, now that might be rare– what do you think?

Thanks, Ruth!

Poverty and Multiple Chemical Sensitivity

Blog Action Day 2008: Poverty

Blog Action Day is an annual nonprofit event that aims to unite the world’s bloggers, podcasters and videocasters to post about the same issue on the same day. The aim is to raise awareness and trigger a global discussion. Blog Action Day 08’s topic is POVERTY. Here is my contribution.

Coping with Multiple Chemical Sensitivity is a challenge on every front in a person’s life. It impacts employment, housing, social activity, personal relationships, personal care, eating habits, exercise, recreation, and leisure. Health care becomes confusing and disorienting because medical doctors do not recognize MCS and therefore do not know how to help. To add insult to injury, some MDs believe MCS is psychosomatic, and either dismiss complaints or send the patient off to the shrink.

And when people with MCS are forced to seek out alternative health practitioners, it’s a crap shoot. While most practitioners– acupuncturists, nutritionists, dentists, and others– have good hearts and surely want to help, chances are pretty good that the patient will be led on a wild goose chase, and waste precious financial resources on alternative therapies and supplements, hoping for that magical cure.

But a cure for MCS is most likely going to be elusive. After all, MCS is not a disease or allergy, it’s a reaction to low level poisoning from toxic chemicals. So the more practical course of action might be for the sufferer to find safe housing and employment, stay away from toxic friends and family, dump toxic clothing and replace with natural fabrics, eat organic foods, buy a HEPA air filter and vacuum, find a good water filter, move to a place with cleaner air. But how easy is that course of action for anyone let alone someone who is sick with depleted resources?

So you can see how MCS can catapult a person into poverty. When forced to leave employment because the air is too toxic to breathe, there is no paycheck. When there is no social or familial support system and no safe housing, a person is out on the street. If there’s not sufficient money for fresh organic food, nutritional supplements, air and water filters, and a HEPA vacuum, then a person’s health further deteriorates. And a life on that edge can very quickly spiral into poverty.

This is why too many people with MCS are sleeping in cars or in aluminum trailers in a friend’s back yard. Many who can’t find safe housing or employment hunker down, strip down, go zen, go without, and struggle to adapt to the newfound state of limited resources. This is the world of poverty, and if anyone with MCS thinks this scenario isn’t a heartbeat away, they are fooling themselves. There is no safety net for people with a health condition not recognized by the government or mainstream medical community.

Such is the life of canaries. It’s not just sensitivity to toxic chemicals that people with MCS live with, it’s acute sensitivity to the social injustice of a negligent health care and governmental system that refuses to even acknowledge there’s a problem.

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If you’d like to learn more about Multiple Chemical Sensitivity and poverty, Grist: Environmental News and Commentary covered the topic in 2006.

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Experts say everyone is affected by chemical sensitivity

Some people are on the severe end, with their sensitivities so extreme that they can’t function in many public places where they can’t control their environment.

Cleveland Living and Lifestyles News has an interesting and well-written article about Environmental Illness and Multiple Chemical Sensitivity entitled “Environmental Illnesses are gaining attention, thanks to the green movement.” It’s one of the most balanced reports I’ve read in a mainstream paper about MCS and worth reading all the way through.

…environmental medicine is the study of how the reactions we have when we’re exposed to certain toxins affect our immune and neuroendocrine (nervous system and hormones) systems.

Still, the field is often misunderstood as “alternative” medicine. But with the growing popularity for “green” lifestyles and all things organic, and with illnesses that Louisiana residents displaced by Hurricane Katrina got after living in Federal Emergency Management Agency-provided trailers, environmental medicine is getting more attention.

“People just make such a quick judgment about those who are really, really sick,” said Dr. Lisa Lavine Nagy, who has been championing for heightened awareness since her own series of misdiagnoses several years ago for what turned out to be severe multiple chemical sensitivity.

Often, those quick judgments happen because the people more likely to report their chemical sensitivities are women over age 40, she said. Most “normal” women of that age have mild symptoms that are hard to explain, and thus easier to dismiss, she said.

Experts say that everyone is affected in some way by chemical sensitivity. No one quite knows why, but some think genetics may play a large role.

Some people are on the severe end, with their sensitivities so extreme that they can’t function in many public places where they can’t control their environment.

Others may have relatively mild symptoms — or none at all…. (Link to full story, go read it!)

[And some great tips in the side bar]

Possible signs of an environmental illness:

• Headaches while talking on your cell or cordless phone.

• Increased sense of smell, especially to items such as perfume, laundry detergents, cats, etc.

• Increased sensitivity to fluorescent light.

• A diagnosis of adrenal fatigue, or thyroid deficiency or overactivity.

Tips from Dr. Michael Roizen, Cleveland Clinic:

• One of the keys — especially here in Cleveland — is to air one’s house out. Over the course of a winter, the quality of inside air becomes worse than outside air, he said. It doesn’t hurt to open the windows periodically on good days during the winter.

• Avoid materials — household cleaners, rugs, air fresheners, even some furniture — that emit lots of volatile hydrocarbons. As Roizen put it, “You want to use cleaning fluids that are, in fact, safe enough to drink.”

Possible treatments to discuss with your doctor (from Dr. Lisa Nagy):

• Remove yourself from possible causes, i.e. a “sick” house or office. The culprit may be mold, or as unsuspecting as carpeting or fabric softener. A July study from the University of Washington revealed that six top-selling laundry products and air fresheners gave off toxic chemicals — none of which was listed on product labels.

• Decrease your total chemical load. Switch to organic food, filtered air and water.

• Detoxify with the help of intravenous and oral vitamins and supplements, under a doctor’s supervision.

• Investigate whether you have specific food or chemical allergies or hormone imbalances and/or insufficiencies.

• Consider treatment in a low-temperature (140 degrees) sauna, under a doctor’s supervision.

Link

Short film to document housing for people with MCS

Here’s the trailer to a short film, not yet finished, called Homesick: Living with Multiple Chemical Sensitivity.

The upcoming hour long documentary is produced and written by Susan Abod. You might recognize the name from a post I did yesterday on Abod’s short film Funny You Don’t Look Sick.

The quality of the preview is poor; I look forward to the finished work!

Homesick: Living with Multiple Chemical Sensitivities is an hour long video documentary produced and written by Susan Abod that is now in the process of completion. In Homesick, Susan goes on the road to find out how other people around the country are coping with MCS and dealing with the difficult problem of finding safe housing. She visits their homes and witnesses their daily struggles. They come from all walks of life and live in diverse dwellings that include tents, a house on stilts and a teepee.

Susan’s own journey as a person with MCS traveling from home to home is the connecting thread between these stories. These poignant portraits and her narrative provide a unique, compassionate and even at times humorous perspective on this growing crisis.

[...]

Update

It’s been seven years since the footage [in the clip above] was first taken. Susan’s own health and housing crises interrupted her work on Homesick. Susan recently moved to the Santa Fe area to see if it would improve her own failing health. Yet, finding safe housing still eludes her. In the meantime, she has reconnected with many of the people she originally interviewed and has learned how they have been managing over the years. Susan will be weaving these updated stories along with her own to complete Homesick.

Link to learn more about the film

Link to YouTube clip

Thanks, Linda!

Funny you don’t look sick

Trailer for Funny You Don’t Look Sick, a documentary about a woman living with Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and Multiple Chemical Sensitivities (MCS).

This intimate documentary self-portrait is told with humor and compassion. Susan Abod is a woman living with Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and Multiple Chemical Sensitivities (MCS) or Environmental Illness. Filmed over a period of 18 months in 1994-95, Susan describes in detail the nature of her illness, illustrates her daily routine, and gives us a guided tour of her environmentally “safe” apartment. Comments from Susan’s numerous doctors and a visit with her CFIDS support group offer further insights in this illuminating, firsthand report on a baffling, twenty-first century disease.

Link

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