Sick, Yes--Psycho, No
People With Multiple Chemical Sensitivities Fight To Be Believed

by Will Moredock

Life is complicated for April Lang. At 36, the architect isn't able to work in her field. She supports herself by designing webpages, which allows her to work out of her Dilworth apartment. She goes out only a couple of times a week for necessities, such as picking up laundry and groceries, and for an occasional movie matinee with a friend. Lang's home is her fortress, her refuge.

This is probably true for most of us, but in April Lang's case it's literal -- and it's a matter of life and death. Lang suffers from a condition which the medical profession calls multiple chemical sensitivities. She can have violent reactions to a wide range of common substances in the environment -- anything from hairspray to printer's ink to automobile exhaust. For Lang and the growing number of MCS sufferers, our world of abundance and convenience has become their world of diminishing freedom and security.

"I have met the enemy and it is air freshener," she says. Dozens of other household and industrial products are also on her list of substances to avoid.

Lang chose her apartment, in part, because the building is more than 50 years old and contains few modern petrochemical and other synthetic construction materials. And it offers a second-floor veranda, where she airs out new clothes, magazines and other products before she brings them inside.

The small apartment contains some strange hardware. There's an Aireox charcoal air filter in her living room and another in her bedroom (and another in her car). In her bedroom also sits a stainless steel "reading box," with a glass top, an air hose and pump attached. Lang puts newspapers and magazines inside the box, which draws off the fumes from the ink as she reads. Visitors to her home -- including this writer -- must bathe and shampoo with Ivory Soap; must use no hair conditioner, spray nor gel, no colognes, perfumes nor deodorants; must wash their clothes with special detergent and use no fabric softener.

Contrary to the popular image that is oft-times presented of MCS sufferers, Lang says, she is not neurotic or hysterical. Before the onset of MCS, she traveled widely, at home and abroad, and enjoyed an active social life. She pursued her dream of becoming an architect and had just passed her licensing exam in Raleigh when her symptoms began in 1993. She was robust and extroverted, she says, and even now she isn't squeamish or inhibited. "I even squish my own bugs," she likes to say.

In August 1993, Lang suffered the first bout of sinus infection of her life, soon followed by hyperventilation, migraine headaches and a strange sense of dislocation. "Nothing made sense to me, I couldn't walk straight and I had trouble breathing," she has written. Her condition quickly spiraled downward. Over the next months she spent large amounts of time and money being carried to the emergency room and tested, tested, tested.

Lang might have done what many other MCS sufferers do -- spend many thousands of dollars, seeing dozens of specialists, only to be patted on the head and told there's nothing wrong that a good shrink can't fix. But April Lang had the brains and the skills to become her own medical detective. Starting with the first few clues, she went on the Internet and began researching multiple chemical sensitivities.

Today, the fruits of her research can be weighed in the boxes full of journal articles, faxes, computer printouts piled around her apartment. And still she sits in front of her computer for hours every day, networking, posting notices on her website and researching. (One of Lang's conclusions: her MCS was brought on by the bite of a brown recluse spider, whose venom contains an enzyme called sphingomyelinase-D and is toxic to the brain, in June 1993.)

Lang has learned as much about human nature as she has about biology and chemistry. Friends, she has discovered, can be fickle, thoughtless, undependable. Many of them have found it easier to walk away than to accommodate her special environmental needs. She reaches people now in other ways. "I am fortunate to have a computer with an Internet connection, which allows me to have a 'window on the world' in the midst of my isolation," she writes on her webpage.

She uses her computer to share her experience, her research, her strength. She has organized a telephone conference support group for MCS sufferers and offers guides to non-toxic household products, reading lists and other materials for victims of multiple chemical sensitivities.

"I may get physically well again; I may die soon," Lang writes. "Whatever the outcome, I know that instead of sitting around and waiting to be physically well again, I did my best to make the PROCESS of healing my 'cure.'"

 

Polish Remover & Limited Choices

The first 40 years of Mary Deaton's life were very American and rather unremarkable. Born into the Army, then married into the Army, she lived on US military bases around the world, when she wasn't at her parents' home in California. Along the way, she married and raised two children, moved to North Carolina in 1976 and held several jobs, including seven years as manager of a Pizza Hut in Mooresville. She describes herself as sociable and "an avid reader."

In March 1992, Deaton was working in the receiving department, on the third shift management team at a giant retail store in Statesville. A tractor trailer of merchandise backed up to the loading dock. The employees didn't know it, but on board was a broken case of fingernail polish remover. The trailer was opened and almost immediately the employees' eyes began to tear up from the chemical smell, Deaton said. Then the cargo was brought out of the truck, into the receiving area and the whole back of the store was suffused with the smell. "You could just look around and see people at various points of discomfort," Deaton says.

Deaton was inside the trailer, unloading the cargo, she says. "I don't believe I could have been inside the truck longer than maybe 10, 15 minutes. And I got to the point I felt I could not breathe," she says. "I remember walking off the truck, thinking 'I need to get some air,' and I apparently passed out."

Deaton and 10 other employees went to the emergency room that night, Deaton says. She was released from the hospital after a few hours, but her life had changed forever in that short time. For six years she has battled headaches, photophobia, audiophobia and her former employer, who has fought her Workman's Compensation claims. Her senses of taste and smell have been permanently distorted.

Deaton's condition isn't as severe as Lang's, but she says, "My life will never be normal, as to what it was. I live a lifestyle which means I have to control and minimize exposures...You do that by making your home as safe as you can...It's kind of a risk assessment. You know if you're going to go visit a friend, it's going to cost you. If you have friends who use potpourri and air freshener, you know you can't go to their homes."

Deaton says her life is circumscribed by painful and limited choices. "You wind up having to make choices as to what you will allow to make you sick. I have to go to doctors. There are certain things you still have to do, no matter what. You go to the grocery store...I no longer drive...Everything you do takes a toll on you."

 

Stigmatized

Studies at East Carolina University and the University of Arizona-Tucson suggest that as many as 30 percent of Americans have a single chemical sensitivity, which may create an inconvenience, but doesn't alter a person's lifestyle, says MCS sufferer Cynthia Wilson of the Chemical Injury Information Network. Four percent of Americans have multiple chemical sensitivities, which force sufferers to change the way they live to accommodate their condition. At the extreme end of the spectrum are the April Langs and the Mary Deatons, who have been disabled, whose lives have been turned upside down by their sensitivities to chemicals. Medical science has been slow to recognize MCS, in part, because of what some call a campaign of disinformation by the chemical industry, designed to portray people like April Lang and Mary Deaton as suffering from mental, rather than physiological disorders ( sidebar ).

"The disease has such a stigma attached to it, just like AIDS did 10 years ago," Lang says.

Even physicians who treat the disease, such as Lang's, do not wish to be identified or interviewed for this story. In some circles they're considered quacks for even acknowledging that a person may suffer from multiple chemical sensitivities. Cynthia Wilson says she knows of doctors who have had their medical licenses challenged for diagnosing patients with MCS.

"What doctor wants to fight that kind of bureaucracy?" Wilson asks.

One doctor who is not afraid to speak out is William J. Meggs, chief of toxicology at East Carolina University and a leading researcher in MCS. "It's a biological condition..." Meggs said. "The medical literature strongly supports a physiological basis for this sensitivity..."

Attitudes toward MCS may soon be changing, for several reasons. Tens of thousands of Gulf War veterans and breast implant recipients are claiming that they have suffered damage from some kind of chemical exposure. Dow Corning, which manufactured the breast implants, and the Pentagon have taken the position there is nothing wrong with these people and if there is, they aren't responsible. (Dow Corning has spent at least $3.7 million on a public relations campaign to defend itself from the breast implant claims; another $891,000 to fund grassroots support organizations of breast cancer victims and still more to fund three science-for-hire studies. The studies were so flawed, FDA Commissioner David Kessler co-authored an article saying they had no scientific value.)

On another front, People magazine published last month a feature story on Cindy Duehring, America's most celebrated MCS victim. In 1985, Duehring was a senior pre-med student at Pacific Lutheran University, in Tacoma, WA. That year, an exterminator doused her apartment with a pesticide to wipe out a flea infestation. Soon Duehring began experiencing fever, nausea, diahrrea and violent seizures. Her condition deteriorated rapidly. Since 1989, she has been confined to an isolated cabin on the North Dakota prairie, surrounded by air filters and special furniture, unable to bear noise or light.

Yet, even under these conditions, she founded and runs the Environmental Access Research Network to provide legal and scientific information to HTTP://www.coloradohealthnet.org/site/idx_mcs.htmlMCS researchers around the world. Last December, in recognition of her extraordinary work, Duehring received Sweden's Right Livelihood Award, widely known as the "alternative Nobel Prize." (Since this article was originally written, Cindy has passed away. We all miss her very, very much, as she was a most extraordinary human being, and I had the honor of speaking to her on the phone at length several times. Most of all, Cynthia Wilson, the head of CIIN, and Cindy's husband and family miss her.)

 

New Studies

Significant new information on MCS comes in the second edition of Chemical Exposures: Low Levels and High Stakes, by Nicholas A. Ashford and Dr. Claudia S. Miller. Ashford and Miller reach several important conclusions: MCS does appear to be a disease (or family of diseases) that occurs in two stages. It is initiated by a high exposure (for example, a blast of pesticides, a broken case of fingernail polish remover or a poisonous spider bite) or by repeated moderate exposure to strong chemicals, such as those found in chemical dumps or new carpeting. After the "initiating" exposure, symptoms can be triggered by extremely low exposure to many different chemicals, such as those found in fragrances, tobacco smoke, fabric softeners and pharmaceuticals. Not everyone exposed to chemicals gets MCS, just as not everyone who smokes develops cancer. A certain portion of the population seems predisposed to react strongly to chemicals after an initiating event.

Ashford's and Miller's 1989 study on MCS won the prestigious Macedo Award of the American Association of World Health. They mince no words in describing the influence of the chemical industry and its mercenary researchers: "...those who continue to promote untested and untestable psychogenic theories for MCS are part of the problem. Their lobbying of policymakers and others in this regard has contributed to widespread governmental inertia on this issue, making it near impossible to obtain funding for essential studies specifically directed toward MCS. Many of those who advocate psychological explanations in government-sponsored meetings and in scientific literature are paid corporate spokespersons or consultants with financial conflicts of interest..."

But the chemical industry's campaign will surely continue. They're entrenched and their position was clearly stated in a 1990 Chemical Manufacturers Association report: "There is no doubt these patients are ill -- and deserving of compensation, understanding and expert medical care...The primary impact on society would be the huge cost associated with the legitimization of environmental illness."

The impact on April Lang, Mary Deaton and millions of other Americans is more personal and immediate. Lang looks beyond her personal loss, to the risks we all endure in our chemical-saturated environment. Every year new products and new chemicals are put on the market, with little understanding of who they will affect or how. "And we just keep buying those scented detergents and fabric softeners and other crap we don't need because somebody tells us we have to," Lang says. "And somebody else tells us it's perfectly safe."

Ever more chemicals in the environment mean that ever more people will be suffering from multiple chemical sensitivities, Lang says. "I am your warning. I'm the canary in the coal mine."

   

The Best Science Money Can Buy

by Will Moredock

"...for those suffering from what they believe to be a hypersensitivity to certain chemicals or other items within their environment, we want to make it clear...Yes, you are suffering, but relief is not from a doctor prescribing color-free garments. Relief is more likely and reliably found looking inward, and seeking answers."
The above paragraph is taken from a 1996 editorial which ran on the Mental Health Net website. It reflects part of the skepticism and scorn which is often directed at sufferers of multiple chemical sensitivity. And it's part of a chemical industry-funded campaign to shift the symptoms of MCS from chemistry to psychology.

"The stakes are enormous and the chemical industry knows it," writes Peter Montague in the February 12 Rachel's Environmental & Health Weekly (erf@rachel.clark.com). "If a clearly defined disease emerges from the research on MCS...then it can't be too many decades before chemical corporations will have to face liability and compensation claims from millions of victims."

To fight its PR wars, the chemical industry created something called the Environmental Sensitivities Research Institute, which seems to be modeled after the Tobacco Research Institute. TRI has been pumping out misinformation and questionable data for decades, trying to keep the waters muddied on the health effects of smoking. Funded by such corporate giants as DowElanco, Proctor & Gamble and Monsanto, ESRI is headed by Dr. Ronald Gots, who also runs the National Medical Advisory Service, which provides expert witnesses to defend chemical corporations in tort lawsuits.

Dr. Gots has done no original peer-reviewed research on MCS, Montague writes, yet he and ESRI specialize in claiming that MCS is a mental condition.

The Chemical Injury Information Network monitors MCS issues and personalities, including Gots. The May 1996 issue of Our Toxic Times, the CIIN newsletter, reported that Gots posted a report on the Internet, recounting that a workshop of "experts" in Berlin, sponsored by the German government and the World Health Organization, had pooh-poohed the whole notion of MCS. In fact, the workshop was sponsored by the International Programme on Chemical Safety, which has a reputation of being pro-chemical industry. Additionally, the actual report contained a significant footnote not included in the Internet posting: "These conclusions and recommendations. . .do not necessarily represent the decisions or the stated policy of the United Nations Environmental Programme, the International Labour Organization or the World Health Organization." As for the "experts," CIIN says the majority of them were either linked to the chemical industry or had no demonstrated expertise on the MCS issue.

Speaking from his office in Rockville MD, Gots denied ever making an Internet posting concerning the Berlin workshop. "I've never posted anything on the Internet," Gots said. "I was involved with an organization that may have posted something on the Internet."

Gots said the real charlatans are the MCS therapists who charge as much as $10,000 to $15,000 a week for unproven treatments.

"I'm against quackery and I'm against improper medical care," Gots said. "...Every major medical organization that has looked at this issue has not found it to be a physical, organic or toxicologically based disorder...It is a fringe medical practice; it is being populated -- in part, not entirely -- by people who are profiting tremendously from the misery of unhappy people and using those people for their own personal gain."

Not so, says Dr. William J. Meggs of East Carolina University, who has written a half dozen papers on MCS. Those who claim that MCS is a psychogenic condition are "people who've done virtually no sound research in the area and who are funded, directly or indirectly, by commercial interests."

Research in the field of MCS -- including his own -- has been blocked by industry lobbyists, Meggs said. "A very effective job has been done of convincing people that this is a psychological problem and, therefore, they shouldn't waste money on it." He said he has had "solid, scientific grant applications" turned down with the comment: "This is a psychological problem."

It's all another example of trying to sort out fact from industry propaganda and it's the same battle the public health sector has been waging with Big Tobacco for decades. The ties between industry and research are more common than one would think, according to Cynthia Wilson, editor of Our Toxic Times. CIIN has documented other cases of science-for-hire being used by the chemical industry and later being discredited, according to Wilson.

In mid-1996, Wilson reported a sudden increase of more than tenfold in the number of anti-MCS articles in the popular and academic press, as the chemical industry ratcheted up their PR campaign. The articles seemed to hit on several points consistently:

that MCS sufferers refuse to face their psychological problems;
that MCS sufferers are greedy and litigious;
that greedy doctors are promoting MCS to sell false treatments and
there are no objective tests for MCS.

In the December 6, 1997 Creative Loafing, we described a pattern of funding for rightwing think tanks in the US over recent years. Based on a study by the National Committee for Responsive Philanthropy, CL showed how corporations and private individuals have invaded academe and the media, spending millions of dollars to produce and disseminate research designed to influence public policy and public opinion.

One of the most effective groups cited in the NCRP study was the Reason Foundation, of Los Angeles. According to the Foundation's 1996 annual report, some of its biggest corporate donors included the American Petroleum Institute, American Plastics Council, Chemical Manufacturers Association, Chevron Corp., Eastman Chemical Co., Exxon Corp., Proctor & Gamble, Shell Oil Co., Union Carbide Corp. and Western States Petroleum Association. A spokesman for the Reason Foundation assured us "there definitely is not a connection" between the money it receives and the work it does.

Part of the foundation's aggressive communications strategy is the monthly publication Reason. In June 1996, Reason published an article by Michael Fumento, citing Dr. Ronald Gots, the bogus World Health Organization workshop, and other science-for-hire sources to conclude that MCS is a psychogenic disorder and should be treated as such: "By all traditional standards of illness -- symptoms, causes, treatments and tests -- MCS comes up wanting."

One of the readers of the Reason article was Dr. John M. Grohol, a psychologist in Columbus, Ohio, who proceeded to spin out an editorial for his Internet news service, Mental Health Net, which we quote above.

Contacted at his home in Columbus, Grohol acknowledged he had never done any research on MCS; all he knew was what he read in Reason. But, apparently, that was enough.

"I reviewed their data," he said of the article. "Their data was solid."

We'll probably never know who paid for that data or how much it cost, but it's a safe bet somebody got their money's worth.

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