MCS Isn’t an Anxiety Disorder

The idea that Multiple Chemical Sensitivity (MCS) is an anxiety disorder is one that just won’t go away, despite the abundance of evidence to the contrary. I wrote a post about some of the studies demonstrating biological causes 11 years ago and I’m going to revisit the topic today and briefly discuss some of what we’ve learned since then. Some of these mechanisms overlap and work together, but I’ll separate them for the sake of clarity.

• Mast cells may be involved. A 2021 study notes that our understanding of mast cells and their ability to cause inflammatory and allergic responses has grown rapidly in the past decade. Mast cells are the body’s first responders, reacting quickly when they perceive a threat. They respond to different threats in specific ways, releasing histamine in response to a bee sting, for example, and different mediators in response to chemical exposures. The authors note that mast cell activation appears capable of explaining chemical, food, and drug intolerances that follow exposure to a wide range of xenobiotics (chemicals not naturally produced by the body). After comparing patients with Mast Cell Activation Syndrome (MCAS) and Chemical Intolerance (CI) or Toxicant Induced Loss of Tolerance (TILT) they note that “as the likelihood of patients having MCAS increases, their likelihood of having CI/TILT similarly increases, to a near-perfect correspondence at the high ends of these scales.”

• Stimulation of the aryl hydrocarbon receptor (AHR) and the NMDA receptor may be part of the process. If you’re interested in this fascinating but somewhat complicated topic, block off some time, put on your thinking cap, and watch the brilliant and tireless Bob Miller (who I’ve worked with for years) explain it in a recent video. 

  The AHR is a unique environmental sensor that, depending on what it binds with, can act in either a pro-inflammatory or anti-inflammatory manner. Exposure to certain chemicals and other things, including mycotoxins from mold, can lead it to initiate a process that stimulates mast cells. The process Miller describes can also involve an increase in intracellular calcium. When the balance is off between the calcium outside and inside our cells, it can cause significant problems, including damage to the immune and central nervous systems.

• Chemical exposures can activate the cell danger response (CDR). The CDR is triggered when threats in the environment overwhelm the cell’s capacity to meet them. A 2020 article notes that people can be resistant to exposures, but then become vulnerable to reactions after a predisposing event. The author adds that in sensitive people, “whose cell danger response has been primed by a perfect storm of previous chemical, microbial, physical, and/or psychological stresses,” exposures can cause significant and long-lasting reactions. In an earlier publication, the author noted that an understanding of the CDR helps us reframe old ideas about disease development for a wide range of conditions, including “food and chemical sensitivity syndromes.”

• Endocrine disrupting chemicals may be part of the picture.  In a wonderful presentation that’s well worth watching, Dr. John Molot notes that traditional toxicology has always said that “the dose makes the poison,” so the field has had trouble understanding how people with MCS can react to such low levels of chemical pollutants. We now know, however, that some chemicals can act at very low doses, due to the way they interfere with the functioning of hormones. “Hormones” doesn’t just mean the reproductive ones. We have over 50, including serotonin, insulin, and cortisol, and they have wide-ranging effects.

  One of the ways that certain chemicals confuse our body is that they bind to the cell receptors where natural hormones are supposed to fit. Molot states, “If a foreign chemical has an affinity to bind to a receptor, it can stimulate it and initiate changes in cell signaling and function. Even very low, but repeated doses can stimulate the cell to produce even more of these receptors (this is called upregulation) which results in an increased ability to detect the chemical and increased responses by the cell to the perceived message.”

• Transient Receptor Potential (TRP) channels may play a role. Molot notes that the 2021 Nobel prize was won by David Julius and Ardem Patapoutian for their discovery of this family of receptors. TRPs respond to stimuli, including from chemicals, and transmit corresponding signals to cells. Molot points out that there is robust evidence that these receptors can become sensitized. In fact, he points to 20 studies that show that two particular TRPs are sensitized in patients with Multiple Chemical Sensitivity.

• There seems to be a strong genetic component. In particular, when people have a genetic profile that makes it harder for them to detoxify toxic compounds, they are much more likely to develop MCS. In my 2012 post I mentioned a study that found that women with variants in two genes associated with detoxification were over 18 times more likely to have MCS. In his video presentation, Molot points to seven published papers demonstrating that patients with MCS have more genetic variants related to poor detoxification than people without the condition do.

  In 2015, a fascinating study was published that indirectly points to the genetic component and detoxification challenges. The authors found that mothers with chemical intolerances were three times more likely than others to report having a child with autism. One possible explanation is that the children inherit the genes that make them poor detoxifiers from their mother and the buildup of toxins contributes to the development of autism. Another possibility is that even without inheriting the problematic genes, the children may simply be born with a higher toxic load because mothers unfortunately share some of their chemical body burden with their developing children. Whatever the mechanism, it seems unlikely that the correlation would exist if MCS were simply a psychological condition.

I often wonder why the “MCS is anxiety” narrative has such deep roots despite all the contrary evidence. As I’ve noted many times, part of the reason is that there’s been a very deliberate disinformation campaign which has been largely successful. I think it’s more than that, though.

I think there’s a belief that anxiety is something that people can think their way in and out of, and if we believe that people’s problems are on some level their own fault, we can assure ourselves that we’ll never find ourselves in their shoes. In the case of MCS, this also means that we don’t have to make the lifestyle changes that could make a difference. The reaction is understandable, but dangerous.

Yes, there’s a genetic component to MCS, but whether or not you have a profile that puts you at higher risk, you aren’t immune. A 2018 study found that the prevalence of MCS increased over 300% in a decade. And, of course, chemical exposures are linked to a wide range of other health effects, including cancer. Take care of yourself. Take care of those of us with MCS. Please make the changes that will give us all a healthier future.

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?

A Game of "What If"

I’ve been writing this post in my head, wondering when the best time would be to share it. When will everyone staying home because of COVID-19 find the novelty wearing off?  When will most people really start to feel the challenge of seeing the same walls day after day, of feeling isolated and alone, of realizing the world is full of airborne threats to be dodged and managed?

This could be an important opportunity for the chemically ill community – maybe the closest we’ll ever get to being understood by the healthy population. It seems like a good time to play a game of “What If.” Here goes.

• What if you had to stay home to avoid the virus, not only for weeks or months, but for years, even decades, on end?

• What if people who were immune to the virus (or thought they were) put it in the air intentionally? What if they rubbed it on their bodies and infused their clothes with it and sprayed it in public buildings and in their homes and yards?

• What if people constantly told you or implied that you were exaggerating the problems the virus could cause or that your beliefs about it were a sign of mental illness? What if they told you over and over again that it wouldn’t affect you if you didn’t believe it would?  What if there was a powerful, well-funded virus lobby that worked hard to shape the opinions of medical professionals, employers, and the general public?

• What if the “We’re all in this together” mantra wasn’t true?  What if you were one of a minority of people who had to stay home? What if most people were out living their lives and were too busy to find ways to include you?

• What if you had been staying home alone for years, asking businesses, medical facilities, schools, churches and other organizations if they could either provide a virus-free space or online connection options, but they ignored you?  What if many people were suddenly forced to stay home for a while, and online opportunities instantly appeared? 

How would you feel? What would you hope others would do in the future? Replace the word “virus” with “chemicals” and you have the reality that those of us with chemical illness face. We try to find or create safe spaces and we shelter in them, working hard to keep them untainted as toxins are introduced from the actions and choices of others. When we leave our homes, we protect ourselves as best we can, but instead of being worried about potential future problems, we often experience symptoms, sometimes excruciating and life-threatening ones, immediately on being exposed. As with virus prevention, we’ve learned that the easy solutions (masks and air filters) aren’t enough and that we can only stay well if others take the problem seriously, too.

I want your life to improve, but I also want you to remember how you feel now. Human nature being what it is, though, I’m afraid you won’t. Recently I’ve been learning about the hot-cold empathy gap. The term describes the fact that when we’re in a “hot” state (being driven by visceral forces like anger, hunger, sexual desire, etc.) we have trouble remembering what it’s like not to be in that state and vice versa. It leads to a lack of empathy both for ourselves and for others. Right now you have a taste of the frustration, anxiety, and loneliness we experience, but once things calm down, the memories and empathy will fade.

Because of that, I’d like to ask you to act now to make some changes. There are two avenues of change needed. We need more safe spaces we can enter in person, and we need more online connection options.

What can you do now to make your home and other spaces more healthy and accessible?  Can you remove fragranced products? Can you switch to safer cleaners? Can you change the way you deal with bugs and weeds?

How can you increase online connection options?  Workplaces, schools, and churches have all discovered that the technology isn’t hard to master. You’ve proven you can do it. The trick is that what works when everyone is logging into a meeting from their own computer doesn’t work as well when most people are in one room and there are one or two trying to access the meeting from elsewhere. Sometimes only the person leading the meeting can be seen and heard by the online participants, which makes group discussion problematic. I would tell you what the best options are for combating the issue if I knew. I believe a multi-directional microphone is part of the answer. If someone with experience in what works would provide the information in the comments section, I would very much appreciate it. (If you comment on the blog itself rather than on Facebook or Twitter, more people will be able to see it.)

The book of Genesis tells us about Joseph, whose life fell apart to the point that he ended up in prison, through no fault of his own. Pharaoh’s cupbearer ended up there, too, and Joseph interpreted a dream for him and predicted that he would soon be released and back in Pharaoh’s good favor. Joseph had a request for his fellow inmate: “When all goes well with you, remember me and show me kindness; mention me to Pharaoh and get me out of this prison” (Genesis 40:14). Verse 23 tells us what happened when the cupbearer was released: “[He], however, did not remember Joseph; he forgot him.”

We in the chemical illness community are like Joseph. Suddenly the cells are full of people who will soon be released. We’re asking, pleading, begging, “Please, remember us when you’re free again and show us kindness. Help us get out of our prison.”

What if you acted now to make changes?  What if you didn’t forget us when your life opened up again?  What if?

Receiving Sight

Recently, the church where my late husband served as worship minister held a blood drive in his memory. It was appropriate, because Dan frequently organized blood drives and was a blood and plasma donor as often as he was allowed. (Sometimes he wasn’t allowed to give because of places he had recently traveled.) Dan was also a tissue donor. After his death, skin, bone and other tissues were shared with those who needed them. I was told that two people were likely to receive sight because of corneas they would receive from my always-giving husband.

I’ve been thinking about sight lately. Dan gave physical sight, but I’m also feebly trying, through this blog, to facilitate sight, or at least insight, myself. I want us all to see and understand the connection between products we use and the health symptoms we and others face. I want to help bring attention to the deception and obfuscation that prevent us from even easily knowing what we’re buying and using.

Last month, USA Today reported on a Consumer Reports survey finding that 66% of consumers wrongly believe the word “natural” on a food label means something. Consumers believe it may mean that a food contains no artificial ingredients or that no pesticides were used. Others connect the label to a lack of genetically engineered organisms, growth hormones or antibiotics. As the article states, however, “The problem is, consumers are wrong. Under federal labeling rules, the word natural means absolutely nothing.”

The situation is no better for personal care products. An Organic Consumers Association report noted that a survey found consumers to be "widely confused" by personal care product labeling. The report notes that almost half of survey respondents believe that a personal care product labeled “Made with organic ingredients" is composed of "all" or "nearly all" organic ingredients, but that there are no federal regulations that require that.

Of course, the labeling problem goes far beyond the use of terms like “natural” and “organic.” Problems include the fact that many ingredients don’t have to be listed at all, and that single innocuous-sounding terms can hide multitudes of potentially-dangerous chemicals. The Environmental Working Group reports that tests of fragrance products found an average of 14 chemicals per product that were not listed on the label.

Perhaps the most dangerous misperception regarding chemicals is that personal care, cleaning, and other common products are tested for safety before being marketed. A brief internet search didn’t quickly yield statistics, but I did find a report from the University of Massachusetts that addresses the issue. The publication, entitled “Presumption of Safety: Limits of Federal Policies on Toxic Substances in Consumer Products states, “Despite the fact that most consumers believe that everyday products are thoroughly tested for dangerous chemicals and determined to be safe by government authorities, the reality is that existing regulatory systems leave significant gaps in their capacity to adequately protect consumers from chemical hazards in these products.”

It would be nice if products were proven safe before being sold, but they aren’t. It would be nice if we could count on labeling laws to help us be informed consumers, but we can’t. Addressing problems begins with seeing problems. Lord, please give us sight.

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.

Trying to Get a Product Off the Market

I read an article this week that did a good job of illustrating how little regulation there is for cosmetic products and how hard it is to remove them from the market. A special report by Environmental Health News looked at the history of a problematic hair straightener. That article and a page of information from the Occupational Safety and Health Administration (OSHA) made the following points:

• About 2,000 new cosmetic products enter the market each year and companies are not required to gain approval for them or disclose their ingredients.

• Removing a product from the market requires a federal court battle. The Food and Drug Administration (FDA) does not have authority to recall cosmetic products.

• The hair straightening formulation contains high levels of methylene glycol, the liquid form of formaldehyde, which has been linked to a wide range of health concerns, including cancer. When OSHA tested the air in hair salons using the product, they found formaldehyde levels that exceeded the federal safely limit. During the blow drying phase of treatment, the formaldehyde levels in one salon were found to be five times the safety threshold.

• An employee of the California Department of Public Health noted that the sale of the hair straightener violated five separate laws and resulted in numerous injuries, but that they had not been able to get it banned.

• The product remains in salons despite the fact that several states have issued health alerts and the California Attorney General won a settlement regarding deceptive advertising and failure to disclose a cancer-causing ingredient. The Food and Drug Administration also cited the manufacturer for adulteration and misbranding of the product and a review panel of health experts called it unsafe.

• Stylists profiled in the article now suffer from what the author calls "an odd, lasting sensitivity" to products such as cleaning agents, fragrances and hair spray. Readers of the this blog know the situation is actually not odd at all. Formaldehyde is a known sensitizer, which often sets people on the path of chemical illness.

• OSHA found that many products containing formaldehyde did not list the chemical on either the label or the MSDS (material safety data sheet). They note that even products that claim to be formaldehyde free can still expose workers to the chemical.

It's nice to assume that products allowed to be sold are safe and that those proved otherwise can be easily recalled. Unfortunately, that just isn't the case. We have to take the initiative ourselves to protect our health and the health of those around us. I mentioned in last week's blog post that I didn't think deodorant was worth dying for. I also wouldn't trade my health for straighter hair. How about you?

How to Know if a Product is Safe

People often ask me about the safety or toxicity of various products. Sometimes I know the answer and sometimes I don't. It isn't easy to keep up with the barrage of new offerings continually entering the marketplace, and since formulations change constantly, even a product that was safe one week may not be so the next.

It's important for consumers to be aware of the chemical safety of the products they use, but manufacturers certainly don't make that task easy. There are large loopholes in labeling laws, and a great deal of marketing hype that is often difficult to decipher. Manufacturers have responded to the rising demand for safer products in varying ways. Some have introduced less toxic products into their consumer lines (while generally continuing to sell their toxic standard-bearers) and others have simply re-branded products as "all-natural," "non-toxic," or "green." These terms are used indiscriminately and have very little meaning. Consumer Reports' Greener Choices website has a helpful label search function which notes, for example, that the "non-toxic" label is not meaningful, verified, consistent, or free from conflict of interest.

The term "green" is especially problematic. A green product is purported to be better for the environment than standard fare, but better for the environment does not necessarily mean better for human health. Recycling a toxic product, for example, does not make it less toxic. People who are chemically sensitive often call themselves "canaries" after the birds that miners once took with them to warn of harmful gases. Perhaps we should adopt the color of the canary as a new standard and look for products that are not just green, but also yellow, or safe for human use.

Although it is difficult to get all the information needed to make truly informed product choices, there are some general rules of thumb. Products purchased at health food stores or from companies that cater to the health-conscious are generally safer than products purchased at major retail outlets, although there may be exceptions. There are also websites that help provide information and there are clues to toxicity even on imperfect labels. Reading labels is important and it is wise to note the following warnings or listed ingredients:

• Fragrance - Products do not have to have any odor at all to be toxic (carbon monoxide, for example, is both odorless and deadly), but synthetic fragrances are almost always problematic. (For more information, see the previous post entitled Fragrance Facts.) Heavy fragrances are often added to a product to cover the odor of other objectionable chemicals. I've recently begun seeing the word "aroma" in ingredient lists and assume it is simply another term for synthetic fragrance. If anyone knows otherwise, please let me know.

• Keep out of reach of children - A product containing this warning is obviously hazardous to some degree, and is likely to be harmful for adults as well.

• Use in a well ventilated area - Abundant ventilation is always a good idea, but seeing the advice on a product label may indicate that another product is a safer choice.

• Wash hands well after using - Obviously, washing hands frequently is a good idea for many reasons, but seeing the advice on a product label may mean that the product contains toxic chemicals likely to be absorbed through the skin.

The following websites are helpful (though sometimes hard to navigate) resources for evaluating aspects of safety for certain products:

• HealthyStuff.org evaluates the safety of products in many categories, including children’s goods, pets, cars, and apparel.

• The Household Products Database is offered by the U.S. Department of Health and Human Services and provides health and safety information on household products of many kinds, including yard, home maintenance, auto, home office, and arts and crafts.

• Skin Deep is a searchable safety guide to cosmetics and personal care products.

Making informed product choices is more challenging that it needs to be, but it isn't impossible. Sometimes a quick internet search using the product name and the word "toxic" is all that is needed to obtain good information. A search for "non-toxic alternatives to . . ." can also yield helpful results at times. No matter the inconvenience, educating ourselves about product toxicity and making safer choices is worth the effort. The seemingly small choices we make in the products we use can have profound and life-altering consequences, not only for ourselves, but also for those around us. Let's value our health and the health of those who share the air enough to take this issue seriously.

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?