Life in Bladeland

Once upon a time there was a land full of razor-sharp blades. They covered surfaces and flew through the air. There were big ones and small ones, sticky ones and ones that could be washed away. They were so much part of life in Bladeland that most inhabitants didn’t give them much thought, or they believed they were good or needed. The citizens assumed that their leaders would protect them from things that would harm them, so surely the blades must be safe.

Most of the inhabitants of Bladeland had an armor of sorts: a thick coating on their skin that protected them from feeling immediate effects when cut. People had different types and thicknesses of this coating, though, and everyone’s coating could get thinner as it was shaved down through encounters with the blades.

There was a group of people in the land who had very little defense from the dangers in the environment. Some of them were born with a thinner protective coating and some had originally had a thicker one, but it had been cut away. Life for thin-coaters was very challenging. They were constantly getting wounded, often very deeply, and with serious consequences. They spent most of their time, energy, and money trying to fashion or re-grow their protection or avoid the blades that threatened them wherever they turned. They studied and went to see experts. They learned about their bodies and the danger of the blades.

Thin-coaters saw the blades’ danger in a way that thick-coaters didn’t. They asked people to please remove them from shared spaces. They warned thick-coaters that they could easily end up with their protection cut down. Because thick-coaters had a different experience with the blades than thin-coaters did, it was hard for them to hear the warnings or believe the experiences that were shared. They sometimes saw thin-coaters as confused or exaggerating. The more that thin-coaters made their needs known or warned of the dangers of the blades, the wider the gulf between them grew.

Thin-coaters found themselves with no good choices. They couldn’t safely access most workplaces, medical facilities, schools, churches, or shops. They couldn’t generally join clubs or visit in people’s homes. They tried to make their own home environments as blade-free as possible, but it was hard to balance the physical need for safety with the emotional need for connection.

Sometimes thin-coaters had no choice but to venture out, or they decided the physical cost was worth the emotional gain. When they left their homes, they chose to go to spots with fewer blades, or more escape routes. Because thick-coaters paid very little attention to the blades, they didn’t see or understand the differences in the environments. It didn’t make sense to them that a thin-coater could go to one office building, shop, or home, but not another. Sometimes they told thin-coaters they were lying, manipulating, crazy, or just avoiding something they didn’t really want to do.

When thin-coaters were around others in blade-rich environments, they had a decision to make. Should they let people know how much they were being affected or should they hide their pain and try to manage as long as they could? Either way, they risked ridicule and disbelief. If they let their symptoms show, asked for accommodations, or took obvious steps to avoid getting cut, they were often accused of being selfish or attention-seeking. If they hid their pain, thick-coaters sometimes came to the conclusion that thin-coaters had been exaggerating all along, and that obviously the blades didn’t hurt them as much as they said they did. Thin-coaters wished others would believe them and trust their knowledge and character, but they didn’t know how to make that happen.

That’s how life was in Bladeland. Everyone was getting hurt by the blades, but some saw the effects more immediately or obviously. People fought each other instead of fighting to make Bladeland safer for all. Thin-coaters were deeply grateful for the thick-coaters who were advocates for them and the cause, but there didn’t seem to be many of them around, and the voices of the others were loud. Progress was slow. Would things ever change?  Thin-coaters were tired of the struggle, but what else could they do but keep trying to explain?  What else could they do?

Flame Retardants Revisited

Flame retardants have been in the news recently. First there was news of a study finding flame retardant chemicals to be prevalent inside preschools and day care centers. Researchers examined the air and dust inside 40 child care centers, including those in urban, rural and agricultural areas. They tested for 18 types of flame retardants. including those in two different chemical categories. Both types were found in 100% of the collected dust samples. As I wrote in a previous post on flame retardants, the chemicals have been linked to a wide range of serious health effects.

The second piece of news comes from an article in the Chicago Tribune which reports that a doctor who testified in support of flame retardants has given up his medical license after being accused of fabricating stories of children burned in furniture fires. The story comes on the heels of an excellent series of reports written over the past several years which describe “a decades-long campaign of deception that has loaded the furniture and electronics in American homes with pounds of toxic chemicals linked to cancer, neurological deficits, developmental problems and impaired fertility.”

The ongoing flame retardant saga is a microcosm of the problem of unregulated, harmful, and ubiquitous chemicals that fill our world. Here’s some of what we know.

• Organizations with benign-sounding names are often not what they seem. In their quest to create a demand for their product, manufacturers of flame retardants used a well-known tactic and created a front group known as Citizens for Fire Safety. The Tribune reported that the group billed itself as a coalition of fire professionals, doctors, educators, and others, but that public records showed it to be a trade association with three members: the three largest manufacturers of flame retardants. The website Safer States lists the American Chemistry Council and the Toy Industry Association as other chemical industry front groups. An eye-opening article called Multiple Chemical Sensitivities Under Siege lists the trade organizations Responsible Industry for a Sound Environment and the Environmental Sensitivities Research Institute as well-funded and active groups fighting against the recognition of chemical illness.

• Expert testimony may come from people who are more biased than they appear. The Tribune reports that when he testified in favor of flame retardants, David Heimbach presented himself as simply a concerned doctor, but that he was actually paid $240,000.

• Experts who testify on behalf of chemical companies may not always tell the truth. Heimbach admitted that he told "an anecdotal story rather than anything which I would say was absolutely true under oath, because I wasn't under oath."

• Written communication can be equally misleading and deceitful. Citizens for Fire Safety sent a letter to fire chiefs on behalf of “those of us in the fire safety profession.” The letter’s author, however, was a public relations consultant.

• Whether chemicals actually do what they are supposed to do is often a debatable issue. The Tribune notes that the chemical industry often uses a particular government study as proof that flame retardants save lives, but that the study’s lead author says that his findings have been distorted and used “in ways that are improper and untruthful.” He notes that household furniture generally contains enough fire retardants to threaten health but not enough to provide meaningful fire protection, a situation he calls "the worst of both possible worlds.” Use of the antibacterial ingredient triclosan is similar. Another Chicago Tribune story (I’m becoming a fan of theirs) notes that advisory committees for the American Medical Association and the U.S. Food and Drug Administration state that there is no evidence that washing hands with soap containing triclosan or other anti-microbials provides any health advantages over washing with regular soap and water. The article quotes a scientist with the Natural Resources Defense Council who says, "Triclosan is what we call a stupid use of a chemical. It doesn't work, it's not safe and it is not being regulated."

• Problematic chemicals that are removed from products may reappear later or be replaced by equally problematic ones. The flame retardant known as chlorinated tris has been linked to cancer and was voluntarily removed from children’s pajamas decades ago. However, when problems with the flame retardant penta emerged and it was no longer available for use in furniture products, chlorinated tris came back to partially take its place. Another flame retardant taking penta’s place is Firemaster 550 and, unsurprisingly, it is linked to a growing number of health problems.

Around and around we go. We need meaningful chemical regulation and those of us who care about the issue need to make our voices heard.

People Say Ridiculous Things

Last week I wrote about the concerted effort by chemical manufacturers to discredit MCS as a physical condition and label it a psychological disorder. A recent article entitled Taking Refuge from Modernity; 21st Century Hermits illustrates the point.

The first clue that this is going to be an anti-MCS writing is that the condition is referred to as "idiopathic environmental intolerance." That's the designation the chemical lobby chooses to use. Idiopathic means "arising from an unknown cause" so by adding that term and removing the word "chemical" they can distance themselves from the condition. In other words, "We don't know why people get sick around the products we make, but it certainly has nothing to do with the toxic chemicals we put in them." The second line of the abstract states that

"A proportion of severely affected patients remove themselves from modern society, to live in isolation away from the purported causal agent of their ill health."

The significant words in this sentence are "purported causal agent." Purported means assumed or alleged and often carries the connotation of deceit. Google defines it as "appear or claim to be or do something, especially falsely." The message is that "These people are confused or lying about what causes their distress." The abstract goes on:

"This is not a new phenomenon; reports of hermits extend back to the 3rd century AD. We conducted a literature review of case reports relating to ancient hermits and modern day reclusion resulting from idiopathic environmental intolerance, in order to explore whether there are similarities between these two groups and whether the symptoms of these 'illnesses of modernity' are simply a present-day way of reaching the end-point of reclusion.

The end-point of reclusion? What? The intended message is that "This is not a new illness. It's a psychological condition that has been around a long time. People who claim to have MCS are just hermits in disguise." The authors continue:

Whilst there were some differences between the cases, recurring themes in ancient and modern cases included: dissatisfaction with society, a compulsion to flee, reports of a constant struggle and a feeling of fighting against the establishment.

OK, let's clear this up. We're dissatisfied with society because we can't live in it without becoming very ill. We have a compulsion to flee because we desire to stay alive and live as symptom-free as possible. We report constant struggle because chemicals are everywhere. We feel like we're fighting the establishment because the establishment comes up with articles like this one. The abstract concludes this way:

The similarities which exist between the modern-day cases and the historical hermits may provide some insight into the extreme behaviours exhibited by this population. The desire to retreat from society in order to escape from harm has existed for many centuries, but in different guises.

In other words, "People with MCS exhibit extreme behavior, but they are motivated by whatever motivated 3rd century hermits. Whatever it is, it's not the chemicals. Nope, certainly not the chemicals."

In her book Casualties of Progress, Alison Johnson states that people with chemical sensitivities sometimes get diagnosed with agoraphobia, or having a fear of crowds or public places. Johnson notes that diagnosis is “tantamount to saying to a paraplegic in a wheelchair, ‘Too bad you don’t like to walk.” She notes that MCS sufferers are often accused of acting as they do for some sort of "secondary gain." Johnson states that “one does not have to read too many of the stories [of chemically sensitive people] before it is apparent that this suggestion is at best made in ignorance, and at worst represents an exceedingly cruel attitude toward people whose illness has in all too many cases cost them their job, their home, their friends, or their spouse.”

The "hermit" article is so ludicrous it almost makes me laugh. When I read it, I suddenly had a memory of tobacco executives testifying before congress that they didn't believe that cigarettes were addictive or contributed to cancer. Many Americans began to see in that moment that sometimes people in power will say ridiculous things in order to protect their financial interests.

A 2007 report in the journal Cancer Epidemiology, Biomarkers and Prevention notes that tobacco companies knew of the evidence linking smoking to cancer as far back as the 1950s. The authors state:

"The documents also reveal that the tobacco companies helped manufacture the smoking controversy by funding scientific research that was intended to obfuscate and prolong the debate about smoking and health. Today, the tobacco companies acknowledge that smoking is a cause of disease, but they have not materially altered the way they do business. In our opinion, it is not sufficient for the tobacco industry to merely concede the obvious point that smoking is a cause of disease when it is evident that decades of misinformation has resulted in a public that is massively ignorant about [all of] the risks. Public education efforts are still needed to correct these misperceptions along with government oversight to ensure that the industry is not permitted to mislead the public further. If the past 50 years have taught us anything, it is that the tobacco industry cannot be trusted to put the public's interest above their profits no matter what they say."

Sound familiar? Substitute the word "chemical" for "tobacco" and "chemical exposure" for "smoking" and the paragraph almost works. What doesn't work is that chemical companies have not yet "concede[d] the obvious point" that their products cause MCS and other health problems. Nope, it's not the chemicals. We're just hermits seeking the end-point of reclusion.

More About the Fight

In a previous post that I've referenced several times, I reported on an article by Dr. Ann McCampbell entitled Multiple Chemical Sensitivities Under Siege.I spoke of non-profit organizations formed specifically for the purpose of combating awareness and acceptance of MCS and listed some of the activities of one of them. The efforts of the chemical industry to discredit MCS go far beyond that, however, and today I'm going to revisit the issue and share some of the other points the article made.

McCampbell notes that chemical manufacturers are behind a concerted campaign to cast doubt on the existence of MCS. She reports:

“To that end, they have launched a multipronged attack on MCS that consists of labeling sufferers as ‘neurotic’ and ‘lazy,’ doctors who help them as ‘quacks,’ scientific studies which support MCS as ‘flawed,’ calls for more research as ‘unnecessary,’ laboratory tests that document physiologic damage in people with MCS as ‘unreliable,’ government assistance programs helping those with MCS as ‘abused,’ and anyone sympathetic to people with MCS as ‘cruel’ for reinforcing patients’ ‘beliefs’ that they are sick.”

Taking a page from the playbook of the tobacco industry, chemical manufacturers often use non-profit front groups with neutral, pleasant sounding names, third party spokespeople and what is labeled “science-for-hire studies” to try to make the point that their products are safe and those who believe otherwise are deluded.

The article notes that “the industry has enlisted the aid of vocal anti-MCS physicians who promote the myths that people with MCS are ‘hypochondriacs,’ ‘hysterical,’ ‘neurotic,’ suffer from some other psychiatric disorder, belong to a ‘cult,’ or just complain too much.” These doctors work for the chemical industry as high-paid expert witnesses, but since they don’t usually disclose their financial ties in their writings or speaking engagements, people are generally unaware that the opinions are not unbiased, but reflect the chemical industry’s agenda.

Interestingly, as I mentioned previously, drug companies are also working to deny the existence of MCS. McCampbell explains this by pointing out that many companies that make medications also manufacture pesticides, which are widely implicated in causing and worsening chemical illness. The article names eight large and well-known companies that each have ties to both the pharmaceutical and pesticide industries.

Opposition from the pharmaceutical industry plays out in many ways. One is that researchers supportive of MCS find it difficult to get their studies published in the medical literature. Because medical journals rely on drug advertisements for funding, they are hesitant to publish pro-MCS articles for fear of alienating their advertisers.

This dynamic affects other avenues of information sharing as well. Funding for the American Medical Association relies in large part on the sales of drug advertisements in its journals, and drug companies are major donors to the American Academy of Family Physicians. Doctors find it difficult to receive accurate information about toxic illness and are unprepared to deal with patients suffering from the condition. As a result, according to McCampbell, “their responses to MCS patients have tended to range from dismissive to blatantly hostile.”

The pharmaceutical industry exerts its influence however it can. Despite being a major source of funding for medical research, they are not only failing to pursue research on chemical sensitivities, but attempting to block research by others. The article notes that industry lobbyists commonly call for more research on MCS while simultaneously attempting to suppress it. They state that you can’t prove it exists without more study, but that you can’t study it because it doesn’t exist.

The chemical industry is also very involved in suppressing the truth of environmental illness in the justice system, through such avenues as filing briefs, supplying “expert” witnesses and distributing anti-MCS literature to attorneys and witnesses. They’ve been influential in convincing many judges not to allow toxic illness testimony in court, despite the fact that there are over six hundred articles on MCS and related conditions in the published literature, which, despite the chemical industry’s efforts, support a physiological rather than a psychological basis for MCS in a ratio of two to one.

The attacks come from every angle. In the last decade, the chemical industry has attempted to remove “chemical” from the name MCS and designate it as “idiopathic environmental intolerance” (IEI) instead. There have also been escalating attempts to get medical licensing boards to revoke the licenses of physicians who diagnose and treat chemically sensitive patients.

This is a very real fight with very real consequences. Please pray for the brave physicians and researchers in the battle and for all who are affected by this conflict. And don't believe everything you read.

The Misinformation Campaign

Many illnesses are misunderstood. People with MCS often have more than ignorance to fight, however. Some large and powerful corporations have reasons to make sure that chemical sensitivity isn't accepted as a valid condition and that chemical safety isn't called into question.

Dr. Ann McCampbell has written an excellent analysis of the situation entitled Multiple Chemical Sensitivities under Siege. I recommend it, not only for people curious about MCS, but for anyone interested in how public opinion about medical issues may be shaped. McCampbell details the activities of chemical manufacturers and the pharmaceutical industry. (Oddly, many drug manufacturers also make pesticides.) She writes about non-profit organizations with benign-sounding names and notes that the activities of one of them include the following:

• publishing newspaper advertisements made to look like legitimate news stories stating that MCS “exists only because a patient believes it does and because a doctor validates that belief”

• paying a medical journal to publish the proceedings of an anti-MCS conference which was partly organized by a firm owned by their executive director

• sending anti-MCS literature to a state disability agency developing a report on MCS which included advice on how to avoid accommodating chemically sensitive employees

• sending a representative to a Medicaid Advisory Committee meeting to urge that Medicaid benefits be denied for the diagnosis and treatment of chemical sensitivities

• providing a representative to speak against MCS at a continuing medical education (CME) conference for physicians where he failed to disclose his industry affiliations as required by CME guidelines

• sending a member to speak to the staff at an independent living center where he berated them for providing a support group for people with MCS.

In Isaiah 1:17, God instructs His people to defend the oppressed. There are people all over the world today being oppressed in significant, obvious, and life-altering ways. There may also, however, be less obvious forms of oppression occurring right before our eyes. In the realm of MCS, there is a great deal of very real suffering that is being caused by those with power, resources, and vested interests. Those who suffer from MCS need healthy advocates and defenders. Will you be one?