ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS South Australia Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
The 'San Antonio Seven' still sidelined by illness years after chemical and mold exposures
Thursday 20 October 2011
The ‘San Antonio Seven’ still sidelined by illness years after chemical and mold exposures
Chronic pain. Chronic fatigue. Regular ER visits. Memory loss and confusion. Seizures.
In the mid-1990s the rash of symptoms were the calling card for a group of Southwest Airlines employees working at the airline’s San Antonio reservations center. Many blamed the building, the mold, frequent pesticide foggings, and bacteria in the air vents for forcing them to leave their jobs suffering a cloud of painful conditions. Now 18 years later, members of the so-called “San Antonio Seven” who sued and lost their case against the airline are finding they are likely permanently disabled. “I don’t think chemical sensitivity can be cured,” said Olivia Cornyn, sister to U.S. Senator John Cornyn. “Once your TILTed, you’re always TILTed.”
TILT refers to Toxicant Induced Loss of Tolerance, more commonly referred to as Multiple Chemical Sensitivity, a disorder that is brought on by exposure to chemicals in the environment. And though the research community has been picking away at the problem for more than 30 years, and the U.S. Department of Defense’s war against granting disability benefits for Gulf War veterans claiming chemical poisoning gave the illness high visibility for a time, TILT and MCS are still far from popularly understood. Try explaining to the local daycare worker how their petroleum-based cleaners could send you to the ER. Or watch the busboy’s face when you ask him not to scrub down your table with bleach. You’ll see.
Cornyn, an accomplished artist, returned to San Antonio in 1989 to care for her mother after her father passed away. Soon after taking her job at Southwest, however, the energetic and upbeat woman grew increasingly tired, irritable, and pain-ridden. Soon her mother was doing laps around her. And Cornyn was finding it difficult to simply care for her son. “She was so into doing her Texas line dancing and all, but I didn’t have the energy to do it,” Cornyn said. “My son grew up saying he was the kid with the dirty jeans because I couldn’t care for him.” At first, sickened employees thought it was the cigarette smoke at work that was getting to them. The smoke you could see. And the building was so tightly designed, it seemed to circulate through the building eternally.
Leah Burt started with Southwest when the building opened in 1981. She developed regular and severe sinus infections almost immediately. Exhaustion and regular colds she wrote off to the long hours, the stress, the smoking. “That in itself can make you really sick,” she said. “I couldn’t afford to quit.”
Over time Cornyn’s irritability progressed into more troubling symptoms. “I couldn’t sleep. I was having chronic pain in my hand,” she said. One day she made the mistake of eating a sugar substitute and wound up in the emergency room for three hours writhing in agony.
Meanwhile, Southwest discovered bacteria and mold — including Stachybotrys, the so-called “black” mold, listed by the U.S. Centers for Disease Control as problematic for those with compromised immune systems but regularly linked to more troubling public-health events — lurking behind ceiling tiles, carpeting, insulation, and throughout the heating and cooling system. They began to rehab, frequently during business hours, according to former employees and veteran journalist Arnold Mann, who chronicles the ordeal in his new book “They’re Poisoning Us: From the Gulf War to the Gulf of Mexico.” [See yesterday's article.]
As it became too difficult to work, employees began dropping out. Some feared their range of illnesses was a sort of judgement of God (Cornyn joined another former employee in regularly attending John Hagee’s church for a year, receiving regular healing prayer from the man to no avail). Only after a lawsuit was filed by Cornyn and several other workers did Cornyn begin to recognize her symptoms worsened when she came in contact with certain chemicals. She sprayed a deodorizer in her car and immediately felt her heart erupt in an “off-kilter rumba beat.” After working briefly with photographic chemicals one afternoon, she was unable to get out of bed. “I felt like a millipede that couldn’t get my legs going in the right direction,” she said.
Burt lasted a few years longer than Cornyn; she wouldn’t retire until 2006 when she joined a second unsuccessful lawsuit. First came the brain swelling that affected her vision. Then she was diagnosed with multiple sclerosis. Four years later the bottom half of her heart stopped beating. At 39 she was fitted with a pacemaker. And she returned to work. Her belief that she was being poisoned on the job didn’t develop until she discovered the company was having the building fumigated with pesticides a mere 30 minutes before she reported for work in the morning. Unfortunately, her lawsuit hit district court about the same time that thousands of stolen Southwest Airlines travel vouchers were circulating through the Bexar County Courthouse. It took the judge a weekend to rule in Southwest’s favor.
When it comes to MCS and TILT, so-called “sick” buildings like Southwest’s are just one tip of a multi-horned iceberg. In his book, Mann found that as many as 15 percent of Americans say they have negative reactions to certain everyday chemicals. Six percent of those list their sensitivity as severe. And, despite the fact that only a minority of doctors are versed in the modern malady, 3 percent have been diagnosed with MCS.
Part of the difficulty is that TILT is a “multi-system” disorder: it impacts the nervous system, endrocrine system, and immune system collectively. So someone may be diagnosed with a bi-polar disorder for their mood crashes if they’re routed to a psychiatrist for the behavior problems TILT inevitably involves. Or, if a sufferer hits an allergist first for the severe reactions to foods and smells that develop, they may be misdiagnosed again there. “Many of those symptoms are neurocognitive symptoms. Well, we have names for those sorts of things, don’t we? It’s depression, it’s chronic fatigue, it’s post-traumatic stress,” said San Antonio-based Dr. Claudia Miller, who coined the term TILT in a groundbreaking paper. “But that doesn’t mean that exposures didn’t initiate and cannot trigger it.”
When you consider how many mental health professionals stalk the halls of medicine compared to the number of medical doctors versed in the subtitles of environmental illness, those seeking assistance are facing what Miller, an allergist and immunologist at the University of Texas Health Science Center’s School of Medicine, calls a “David and Goliath” scenario.
“People were overlooking the fact that this is a two-step mechanism. There’s this initial exposure event, the loss of tolerance, and then people start being triggered by things,” Miller told the Current last week. “They often don’t even realize the fragrances that are now triggering their symptoms are not the cause of their illness, necessarily. It may be pesticides in their home, it may be the sick building, their home or workplace.”
In essence, TILT is a product of our oil age, with the most frequently fingered chemicals being volatile organic compounds derived from petroleum. Miller sees cases dating back to the use of mustard gas in World War One, to the sprayed farmworkers in the United States, and in the tens of thousands of Gulf War veterans still struggling for assistance from the U.S. Department of Veterans Affairs. “We’re in a petrochemical age now. I think that’s what hasn’t been understood or recognized to this point. Most of these are petrochemical exposures, certainly the volatile organic chemicals in the sick buildings. There are all kinds of out-gassing from construction materials, adhesives, cleaning agents, everything used in the building.” And as buildings have been built to be more energy-efficient, they tend to hold more of those pollutants within their walls.
Frequently sufferers find themselves trying to educate their own doctors about their conditions. “They know a lot from personal experience, Miller said, “but because this doesn’t fit the usual toxicology — the symptoms are often cognitive and neural-psychological — it gets rejected.”
Such rejection came on a mass scale during the fight with the Veteran’s Administration over Gulf War Syndrome, when both the VA and U.S. Department of Defense were quick with money to study and attempt to treat stress and mental disorders but not for claims of toxic exposures and chemical illness.
Leah Burt describes living with TILT akin to living with a “short-circuit”. “Today is predominantly good. It’s like, ‘OK. Let’s get back with the program. We’ve got so much lost time to make up for.’ Then out of nowhere — well not nowhere, sometimes you know, but frequently you don’t — you’re out again. You can’t get your stride. It’s just an insane way to live. I don’t know how to describe it.”
First described in the scientific literature in the 1950s by a Chicago-based allergist, the symptoms of MCS are frequently linked to scented consumer products. A recent study by researchers at the University of Washington analyzed the chemical makeup of 25 popular scented products, including fabric softeners, dishwashing detergents, and deodorants, finding that 24 of 133 volatile organic compounds released by the household goods are listed under federal law as hazardous or toxic. Alison Johnson, an activist, author, and MCS sufferer who’s been tracking the issue for 30 years, blamed industry for keeping the disease from getting recognition that could reform what chemicals are allowed in consumer products. “It’s like, go back 40 years and say, ‘What is delaying research into the problems of smoking,’” said Johnson. “It’s like: money. … The tobacco industry, which is a really small part of American industry, managed for decades to keep anybody from doing research showing smoking was dangerous, and they would work actively against people who said it was dangerous. Nowadays, the percentage of American industry that is threatened by the idea that chemical exposures could be causing illness in some people, that’s virtually 95 percent of American industry.”
She rattled off a few.
New carpets and cleaning products.
“There’s an overwhelming number of people who are scared to death,” she said. “They’re scared to death of the liability.”
Doctor Miller knows what needs to be done to be able to properly study TILT and begin working on recovery for sufferers. And though she has been called to testify before Congress several times on the disorder and chaired two panels for the National Institutes of Health on the topic, she has yet to receive funds to build a toxics-free center such as one that has been built in Japan.
“Our government is not doing it for us. So everyone is kind of on their own. It’s sort of buyer beware,” Miller said. “You have to learn a lot about what products are safer in terms of how you decorate your home, or the new home you buy, or remodeling, the bottles you buy for your kids. Who can read that stuff? What consumer can read all that stuff? And yet we think those very low-level exposures are contributing to the overall Toxicant Induced Loss of Tolerance.”
But what Arnold Mann hopes to drive home for readers of his book “They’re Poisoning Us!” is that the more than 40 million MCS/TILT sufferers in the U.S. are not all environmental hermits hiding behind masks in remote desert outposts. They are here among us, doing the best they can.
“There’s maybe 1 percent who have to live in the middle of nowhere,” Mann said. “The other 99 percent, they’re like you and me. They have to pick their way through the chemical world. You have to figure out what you react to. There are ways of doing that.”
Getting educated about what triggers reactions is an important step. But since there is no known cure, more important is recognizing the early signs of environmental sensitivity to prevent disability in the first place. “Right now the vast majority have not found a way to recover. What helps the most is getting them away from exposures that trigger symptoms,” said Miller. “More importantly, when you see something evolving, when you see people start to complain of illness, don’t ignore it. Look at the building, bring in industrial hygienists. Don’t do it after people become ill, because once they develop these multiple intolerances it’s hard to back up the process. You can’t go back. It’s like Humpty Dumpty. You can’t put them back together again.”
> Email Greg Harman
The above, with comments, originally appeared here.
blog comments powered by Disqus