|“How Do They Sleep at Night?”|
Author and Investigative Reporter, Arnold Mann, on Corporate Malice and Government Coverups
Interview by Sharon Wachsler
Arnold Mann has been an investigative health and science reporter for 30 years, writing cover stories for Time and USA Weekend. His most recent book is They're Poisoning Us! From the Gulf War to the Gulf of Mexico -- An Investigative Report.
Question: You were the reporter who brought public attention to Stachybotrys ("toxic mold") ten years ago. How did you get from mold to chemicals?
Arnold Mann: Actually, when I started writing about “Toxic Mold,” I had no idea what I was getting into. That first Time Magazine story was supposed to be a short piece about sick building syndrome (SBS) for the magazine’s business readers. I went out looking for things like respiratory problems and fatigue, and what I found at Southwest Airlines’ mold-infested Reservations Center at San Antonio was memory loss, seizures, strokes and death. One woman died from a second stroke after being hauled away by ambulance.
That led to a series of cover stories on toxic mold in homes, schools and apartment buildings. But it wasn’t until I interviewed Dr. Claudia Miller at the University of Texas that I saw the big picture—a nationwide epidemic of initiating toxic exposures, from the new carpeting off-gassing in the EPA’s own Washington Headquarters, to the formaldehyde-leaching FEMA trailers, to the many toxic exposures that rendered hundreds of thousands of Gulf War veterans permanently disabled, to the 9-11 workers, and now to the thousands of Gulf of Mexico residents with MCS one year after the BP spill. It’s all part of the same MCS [multiple chemical sensitivity] epidemic.
Q: What is They're Poisoning Us about?
A: It’s the heart-wrenching story about the millions of Americans whose lives have been turned upside-down by toxic exposures. It’s about their struggle to find medical help in a world dominated by industry interests that prefer to see MCS swept under the carpet, and a medical mainstream that would prefer to write off what they do not understand as psychosomatic. And it’s about the physicians and researchers who have risked their careers to treat MCS as best they can and try to get to the bottom of this medical mystery. And progress is being made.
Q: You initially had difficulty finding someone with SBS to "put a human face" on the problem because either they were suing or were afraid of losing their jobs if they spoke publicly. What other factors keep chemically injured people hidden?
A: I’ve found that a lot of people with MCS tend to isolate themselves, often because they are regarded as slackers or hypochondriacs by former coworkers, family, and friends. This, I think, is one of the most tragic features of MCS, and I hope that this book will help the friends and loved ones of people with MCS understand what they are going through and that it is not all in their heads. And the fact that they do not get well is the fault of the medical establishment, political influence on the part of industry, and a failure on the part of government to do its job and get this thing into the research labs where it belongs.
Q: Which members of the medical establishment? Who in government – individuals or agencies – is failing us? Is it by neglect or by active cover-ups?
A: The American Academy of Allergy and Immunology dismisses MCS as a “subjective” illness. According to a CDC statement, “there is considerable doubt as to whether or not it actually exists.” For years, the Veterans Administration insisted that Gulf War illness was due to battlefield stress, until a Congressional mandate forced the VA to fund a $75 million study that showed it came from battlefield exposures. Then there’s the American Academy of Occupational and Environmental Medicine’s position statement on mold, which stood for years as an impermeable barrier to anyone claiming mold-related illness in court, until it was revealed that the authors of the statement were making their livings testifying in court on behalf of insurance companies. So it’s no wonder that MCS patients are left out in the cold by mainstream medicine. Physicians who legitimately attempt to treat MCS patients often come under attack by their state medical boards. And those who choose to do research on chemical sensitivity usually wind up losing their university funding.
Q: Was there anything you learned in writing They're Poisoning Us that particularly surprised you?
A: Yes. How some people sleep at night. For instance: how Southwest Airlines management conceal a toxic mold problem in their San Antonio Reservations Center for years, even as employees were being hauled away unconscious in ambulances after suffering seizures and strokes. Pesticides were also routinely sprayed in the HVAC system and around workers. A number of employees went on to develop MCS.
Or how the Centers for Disease Control and Prevention (CDC) could bring in an outside team of experts to bury its own team’s findings linking the toxic mold Stachybotrys to pulmonary hemorrhaging in infants. Half the outside experts, it was later learned, had served as witnesses on behalf of insurance companies in mold-related lawsuits. And the CDC director at the time was an immediate past president of Prudential insurance. Fifty-three babies from the same mold-infested inner city housing corridor in Cleveland have since fallen victim to pulmonary hemorrhaging. Five have died. Researchers wonder if this may account for a percentage of sudden infant death syndrome cases nationally, but the CDC has done nothing.
Or how the Veterans Administration can turn its back on 250,000 vets suffering from Gulf War Illness.
Or how BP could deny oil spill workers respirators, to avoid the appearance of a “toxic” situation, while government agencies looked on with indifference. Thousands of Gulf workers and residents are now sick and showing signs of chemical sensitivity. But nobody’s talking about it, insiders say, because it’s bad for business.
Q: You describe the unfolding of toxin-induced illness in vivid detail. I found it painful to read because the stories reminded me of my own descent into illness. Have people with MCS shared their reactions to reading their story in They're Poisoning Us?
A: Yes. Because, as I’ve said, many people with MCS become isolated, they’re surprised to read how many others have the same unusual problems—things like extreme sensitivity to sound and various smells that no one else notices.
Talking to the researchers was fascinating. A whole new world is opening up, despite all the forces trying to hold it back. Dr. Robert Haley did brilliant work with brain scan technology before the VA pulled the plug on his funding and shut him down. I think they were afraid of what he was finding. But just getting a glimpse of Haley’s work, as well as the early work of Dr. Eloise Kailin, the groundbreaking work of Dr. William Meggs, Dr. Grace Ziem and others, is bringing readers hope.
Q: What's it been like for you to uncover such suffering and corruption? Has this investigation over the last decade affected how you see the world and your place in it?
A: I’ve been writing about medicine for 30 years and I’ve never seen anything like this. I can only imagine what it is like to have one’s life taken away by a toxic exposure and then to have doctors turn their backs on you while government and industry conspire to suppress the science that is your only hope. It speaks volumes about the power of money.
Q: Speaking of the power of money, I've really hoped that your Time byline would lend credibility to the MCS issue, and They're Poisoning Us would finally blow the lid off industry's role in hiding MCS. How has the book been received by mainstream media?
A: There has been some response, but it's been tough. Most media is afraid of losing sponsors, I'm told, especially in these hard times, and this book does not shy away from pointing out bad behavior on the part of industry, or physicians, for that matter, who have gone to the dark side, shilling for industry, or taking advantage of desperate patients. Like the physician who billed a family $60,000 for one day of testing, or another who charged an MCS patient $250,000 for treatments that had no benefit.
But the book is getting media attention, and from some outlets one would not expect. Accuracy In Media (AIM), a conservative website known for being very skeptical about environmental groups and alternative medicine, devoted an hour of radio time and featured it on their website. Why? Because after reading the book, they came to the conclusion that MCS is “America’s Hidden Epidemic,” which has been ignored by the mainstream media. A number of other conservative websites linked to the AIM interview, thus joining the cause.
This gives me hope that it is possible to change public perception about multiple chemical sensitivity. If the evidence is properly presented, they will get it.
Q: What do you hope this book will accomplish?
A: From the time I started it, I hoped that this book would help change national perception about MCS, put pressure on government agencies to get the research going, and let the millions suffering from MCS know about new advances on the research and treatment front, and finally, to let people with MCS know that they are not alone.
Q: Reviews and press releases for this book primarily use terms such as "chemically disabled" or "Gulf War Syndrome." Why not use "MCS" or "multiple chemical sensitivity"?
A: The word “sensitivity” at times just didn’t seem strong enough. I wanted the reader who does not suffer from MCS to understand just how “disabling” condition this is. Further, this condition has fallen under many names. And it was important to point out, as Gulf War Illness researcher Dr. Haley said, “They’re all the same.” Denise Nichols, an Army nurse, told me that she and other vets had come to regard Gulf War Illness as a thing unto itself, and that the book reminded her that they are part of a world of people stricken with this disease.
Q: How can activists help this book gain attention?
A: Pass it on to friends and family to let them know what you’re going through, and pass it on to people in the media. And blog the hell out of it. Social media is the most powerful thing in society today. If it can bring down tyrannic governments, it can get our government and mainstream medicine moving on this growing epidemic. Because nobody is immune.
Q: You don't have MCS, but in your role as a health reporter, you have become something of a crusader for MCS and environmental health issues. Why are you so passionate about this topic?
A: If a reporter is fortunate, he or she will at some point hook into something that is bigger than them; something that will engage them completely, both intellectually and emotionally. If they are real lucky, they will help bring about a change in national perception. The toxic mold stories I wrote for Time and USA Weekend hit a national nerve. I hope this book will hit that same national nerve for MCS. Injustice has always been a powerful motivator for me.
On a more personal note, my brother, along with many other infants of his day, lost a great part of his life to medication-induced stroke at birth.
Q: You've talked about the progress being made by researchers, in particular by Dr. Haley. What's changing in research around chemical injury?
A: Despite everything working against them, researchers are making progress on the MCS front. Drs. Meggs, Haley, Mahamed Abou-Donia, and others have demonstrated the effects of MCS on the nervous and the immune systems, as well as identifying genes that make certain people more susceptible to developing MCS.
Some of the most exciting work has been done by Dr. Haley. Using sophisticated brain imaging technologies, he has been able to show specific areas of veterans’ brains that have been damaged by their exposures during the Gulf War. That was before the VA pulled his congressionally mandated funding halfway through the five-year study. Why? The VA said it was because Dr. Haley changed the patient consent forms, denying the VA access to veterans’ medical records from the study. The problem, Haley said, was that he was having trouble recruiting vets for the study because they feared loss of their VA benefits—such retribution had been documented by congressional action against the agency in the past. The VA called Haley’s change in the consent forms a violation of his contract and shut him down, but not before he managed to get some good pictures of this disease in action.
And physicians like William Rea, Kay Kilburn and Ziem are making progress on the treatment front. So it’s not all bad news. Not by a long shot.
Q: To give readers a taste of the book, and because this is a Maine publication, I wanted to close our conversation with an excerpt about Dr. Meryl Nass, a physician at Mount Desert Island Hospital in Bar Harbor. This is from the final chapter, with the misleadingly dire-sounding title, “Treating the Untreatable,” because it's actually more of a tribute to the oft-maligned doctors who are helping people. Dr. Nass is one of them!
Tucked away in the small coastal resort town of Bar Harbor, Maine, Dr. Meryl Nass has set up her own oasis for treating the chemically sensitive.
An internist, Dr. Nass got her first look at chemical sensitivity in July of 1993, when she was called to investigate an outbreak of blindness in Cuba. A member of Physicians for Social Responsibility, Nass had spent the previous three years investigating an anthrax epidemic in Zimbabwe, which turned out to be from a biological warfare attack. She became one of the nation’s leading experts on anthrax, publishing many papers. Cuba turned out to be the same story with a different weapon—cyanide. A cutback of public food rations by the government left the people with protein and vitamin malnutrition and unable to detoxify the cyanide.
“So a little bit of cyanide went a long way,” Dr. Nass said.
More perplexing to Nass were the mysterious multiple system symptoms the Cuban cyanide victims were experiencing, such as diffuse muscle weakness, fatigue, emotional instability, cognitive difficulties, and problems with their autonomic nervous systems.
When she got back to the U.S., she decided to start by looking into chronic fatigue. . . . [I]n 1998 she set up her own private practice to treat people suffering from chronic fatigue and related multiple symptom syndromes. She got plenty of referrals.
“Other doctors were happy to send patients to me because they didn’t have any idea what to do for them,” she said.
After nearly going broke in private practice—the time required to work with these multi-symptom patients is enormous and there’s little insurance reimbursement—she took a staff job at Mt. Desert Island Hospital with the proviso that she could set up an environmental clinic there as well. People have since come to her from all over. She was recently called to speak at the aforementioned Gulf War Research Advisory Committee meeting in Boston, which is where I met her.
Nass’s strategy in treating complex, multiple symptom disorders in their various incarnations, like MCS, chronic fatigue syndrome, fibromyalgia and Gulf War Illness, is to go after the symptoms, one at a time, with evidence-based treatments that have demonstrated effectiveness for each symptom. . . .
More than anything, the chemically sensitive need time, which is scarce in today’s medicine. Dr. Nass calls it “patient-centered care.” She saw the need for it from the beginning. “People would come into my office with color-coded note books,” she recalled, “because if they didn’t write everything down, they couldn’t remember it.
“Unless you provide a setting for them to receive care and advice which they can take home and remember, and talk to them between visits, you’re not going to make a dent in their illness. This is particularly true when you’re giving them things like complicated diets or talking to them about things like environmental remediation if they’re chemically sensitive.”
Spending time with patients also gives them the feeling of being legitimized, even if the treatment options are limited.
“I tell my patients, we have no cure, we don’t understand the illness, but we have ways of ameliorating a variety of symptoms which will lead to improved quality of life,” she said.
Buy They're Poisoning Us! from an independent bookstore. (Longfellow Books in Portland carries it, as does the Maine Coast Bookshop). Or buy it from Amazon.
Sharon Wachsler first wrote for Ability Maine in 2001 and became its monthly “Sick Humor” columnist within a year. After extensive nagging by AM's founder, Norman Meldrum, Sharon founded and became the editor of AM's journal of disability culture and literature, Breath & Shadow. From 2004 through 2007, she organized an editorial board, raised funds, edited, and occasionally even wrote for the journal. When Sharon developed Lyme disease, she became too sick to continue at Breath & Shadow and turned the reigns over to current editor, Chris Kuell. Sharon also stopped writing Sick Humor, in part because she couldn't find anything funny to say about lyfe with Lyme dysease. Sharon is thrilled to be back at AM and hopes to stick around!
Sharon has been writing professionally since 1992. She is best known for her erotic lesbian fiction; her disability-rights humor, culture, and analysis; and her articles and posts about service dog training and handling. If she wants to impress you, she'll tell you that she's been in Best American Erotica twice, has two Pushcart nominations for poetry, and won an Astraea Foundation grant for fiction. Lately she's wracked up a bunch of wins and finalist finishes in online flash-fiction contests, which pay nothing, so that's about her speed.
Sharon tries to be ubiquitous on the web. She blogs about dogs and other aspects of her life at After Gadget, about the Occupy movement from a homebound perspective at Occupy at Home, and about life as a writer with chronic illness at Bed, Body & Beyond. Her Twitter handle is @aftergadget.
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