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.

Chemical Sensitivity Isn't Rare

In my last post, I talked about the long process of writing and publishing my book, and said I could see the finish line, and thought I’d be able to crawl across it soon.  I still see it, but the crawling continues to be slow. 

The process has been so slow, in fact, that at some level I’m surprised that the need for the book still exists.  When I started writing, I would have assumed that by the end of 2019, we’d be more widely aware that the vast majority of chemicals in everyday products aren’t regulated or tested for safety and that we’re all being affected.  I would have predicted a broader understanding that a growing number of us have bodies that react strongly and obviously to chemical exposures, and that we can be the warning sign for people whose bodies react more slowly or in less conspicuous ways.  I would have presumed that people in power would have taken more steps to protect us.

Unfortunately, I don’t see the progress I would have expected.  In fact, in many ways, the toxicity issue appears to be getting worse.  The number of people whose bodies have become so overwhelmed that they developed Multiple Chemical Sensitivity (MCS) is proof of that.

A number of studies over the years have looked at the prevalence of MCS.  The last one, published in the Journal of Occupational and Environmental Medicine in 2018 , found that over a quarter of the U.S. population (25.9%) reported being chemically sensitive, and 12.8% had been medically diagnosed with MCS. The author, Dr. Anne Steinemann, noted that “prevalence of diagnosed MCS has increased over 300%, and self-reported chemical sensitivity over 200%, in the past decade.”

Here are more quotes from the study:

·        Multiple chemical sensitivities (MCS) is a medical condition characterized by adverse health effects from exposure to common chemicals and pollutants, from products such as pesticides, new carpet and paint, renovation materials, diesel exhaust, cleaning supplies, perfume, scented laundry products, and air fresheners.

·        MCS can cause a range of acute, chronic, multiorgan, and disabling health effects, such as headaches, dizziness, cognitive impairment, breathing difficulties, heart palpitations, nausea, mucous membrane irritation, and asthma attacks.

·        When exposed to fragranced consumer products, 86.2% of those with MCS experience one or more types of health problems, including respiratory difficulties (50.3%), migraine headaches (46.9%), mucosal symptoms (46.9%), skin problems (37.9%), and asthma attcks (31.7%).

·        Specific exposures triggering health problems include air fresheners and deodorizers (67.6%), scented laundry products coming from a dryer vent (57.9%), being in a room recently cleaned with scented products (67.6%), being near someone wearing a fragranced product (65.5%), and in general fragranced consumer products (73.1%).

·        For 76.0% of people with MCS, the severity of these health problems was potentially disabling according to the criterion of the Americans with Disabilities Act Amendments Act of 2008 (ADAAA), asked by the question: “Do any of these health problems substantially limit one or more major life activities, such as seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, or working, for you personally?”

·        58.6% of individuals with MCS are unable to use public restrooms that have an air freshener, deodorizer, or scented product; 55.2% are unable to wash their hands in a public place if the soap is fragranced; 63.4% enter a business but then want to leave as quickly as possible due to a fragranced product; and 70.3% have been prevented from going someplace because of the presence of a fragranced product that would make them sick.

·        While researchers continue to investigate which chemicals or mixtures of chemicals in fragranced consumer products could be associated with adverse effects, a practical step in the meantime would be to reduce exposure to the products.

Yep.  Seems like common sense, doesn’t it?  Synthetic fragrances and other everyday chemicals can make healthy people sick and sick people sicker.  They’re a completely unnecessary barrier that keeps an ever-increasing number of people from accessing basic services and attending church and other public gatherings. Things aren’t going to improve unless we decide to improve them. Let’s turn this around.

 

 

Linda and Penny

One of the silver linings of chemical illness is that I've met some wonderful and inspiring people who share the condition and model for me how to face it with grace and faith. One of them is Linda Baker. Linda sometimes shares interesting stories from her past on Facebook and she recently shared this one. She gave me permission to reprint it here and I hope you'll take time to read it.

*****

I found her huddled under a clear plastic tarp in a downtown alley. Fearing the worst for my friend Penny (not her real name), I had driven to Joplin with some supplies that might help keep her safe from the approaching winter storm. She was not in her usual place on the sidewalk outside the newspaper office, so I had begun to search the alleys. Finally, I saw her wedged between the two carts that held all her belongings. She had rigged the plastic tarp over the carts to form a sort of tent, with her back against a concrete block building.

Calling her name, I got out of my truck. There was no reply and the figure under the tarp did not move. The sharp wind took my breath away as sleet began to pound a path to the ground. I called Penny’s name again. Nothing. Fearing I might be too late to help her, I lifted a corner of the tarp. There sat Penny, wearing a thick scarf and earmuffs. She had not heard me calling.

Penny broke into a big grin and said, “I’m so glad you came! Can you get me some coffee?” Sure, I could do that. I also offered to bring her a sack of plain Wendy’s hamburgers, which I knew was one of her favorite meals. She clapped her hands in delight. I gave her the thick wool socks and gloves I had brought along for her, as well as some homemade high energy snacks. I wished I could do more. I offered to take her to a shelter. She explained that she had tried every shelter in town and that her body just couldn’t tolerate the pesticides and cleaners and disinfectants used in them. She had become severely ill from those exposures. I understood that. She was in a really tough situation.

Penny had been a straight A student in High School and had a typical upbringing. She married and had a son. She worked as a waitress at a little cafe on Main Street and was living a happy life until the day the restaurant was sprayed with pesticide. She became violently ill and passed out. Other employees carried her next door to the clinic. She was having great difficulty breathing and almost died. When she finally began to recover, the doctor told her she could not go back to work and would have to avoid further exposure to pesticide.

She had a difficult choice to make. Her family needed the income from her job, yet she was risking her life to go back into that toxic environment. She decided to try working again, but became seriously ill. In time, she lost her job, her family, her home, and her health. No longer able to tolerate any environment that had been sprayed with pesticide, she tried living in first one apartment, then another, but they had all been treated with pesticide. Finally, in desperation, she had begun living outdoors where she could breathe easier.

That is how I met her. People in town just called her “The Bag Lady”, but Mom and I knew she had a story. We used to take her hot meals on cold days. It took a long time before she fully trusted us, but when she finally did, her whole face would light up when she saw us coming. Various agencies tried to help her, but her body would not tolerate indoor environments. One day she shared her story of how she had ended up on the street and showed us a little duffel bag nestled among her other supplies on one of her carts. That bag was stuffed full of articles about allergies, chemical sensitivity, reactive airways disease, and other medical issues. The articles were organized into categories and her filing system would put mine to shame. She spent many of her days in the library and had carefully cut out articles about her illness from magazines that people were giving away. She knew what was wrong. She just didn’t know what to do about it.

Then came the day that we couldn’t find Penny. We had searched around town and even asked the librarian if she knew where Penny had gone. No one knew. By chance (although I know it was really God’s timing) I was driving through downtown Joplin one day and thought I saw Penny’s carts outside the library. I parked and went in. There sat Penny, who was thrilled to see me. She had caught a ride to Joplin, in hopes that they had more resources to help her.

When the library closed, I walked with her back to the spot where she was living. A couple of guys from a church down the street wandered by handing out Bible tracts. While one of them talked to her, I asked the other one if Penny could possibly come into their lobby long enough to warm up on the coldest days. That man looked like I had just asked him to pay off the national debt! Why, NO, she couldn’t come into their church building. Well, not unless she planned to come to church regularly and tithe! I tried to explain why they could not count on her attending church. The man looked very uncomfortable and you could tell he just wanted to be anywhere but standing there talking to someone who was asking him to help a homeless person. I frankly was appalled at his lack of compassion.

It wasn’t long before Mom and Dad went to Joplin for a medical appointment. It was bitterly cold and they had a sleeping bag and warm boots and gloves for Penny. They were disappointed when they couldn’t find her. Suddenly, Mom spotted her carts outside a downtown bar. Now, my mom had never been in a bar in her life, but she marched right in. Penny was seated by a front picture window. She explained that she had gone to the downtown church and asked if she could come in to warm up. They told her NO and turned her away. Meanwhile, the owner of the bar saw her suffering in the cold wind and had gone to invite her in. He told her she was welcome to stay until the bar closed at 2 AM and he brought her a hot meal. I will let you draw your own conclusion about who showed her Christian compassion.

These thoughts were going through my head as I started to go get hamburgers and coffee for Penny on that stormy winter night. A mixture of snow and sleet was coming down and I knew it wouldn’t be long before the roads became hazardous. As I got in my truck she hollered, “Could you get me one more thing?” I said, “Sure” and came back to see what she needed. Well, she asked for cigarettes. I hesitated and said, “I don’t think I can get you cigarettes.” She looked puzzled and said, “You’re over 21, aren’t you? Of course you can buy me cigarettes. You would be surprised how much a lit cigarette can warm up your hands on nights like this.”

Hmmm…. now I had a dilemma. I had never purchased cigarettes and really didn’t want to get them for her. I debated about what to do. Then, somewhere in my spirit, I heard a little voice say, “Who are you to judge her? You are going home to your nice warm house. She is spending the night .. and the next … and the next under a tarp in freezing cold weather. Help her any way you can.” She got her hamburgers and coffee -- and cigarettes.

With this current cold weather, Penny has been on my mind. There are countless people homeless, just trying to survive the day. Perhaps you will have an opportunity to donate your time or money to help them. Perhaps you can say an extra prayer for all those who are homeless. Perhaps God will lead you to meet your own “Penny”. Jesus cared about those people that society ridiculed or forgot. May we all follow His example.

“You will be judged on whether or not you are doing what Christ wants you to. So watch what you do and what you think; for there will be no mercy to those who have shown no mercy. But if you have been merciful, then God’s mercy toward you will win out over his judgment against you. Dear brothers, what’s the use of saying that you have faith and are Christians if you aren’t proving it by helping others? Will that kind of faith save anyone? If you have a friend who is in need of food and clothing, and you say to him, ‘Well, good-bye and God bless you; stay warm and eat hearty.’ and then don’t give him clothes or food, what good does that do?”
James 2:12-16

MCS Prevalence: Dissecting the News

There has been a bit of media coverage this week of a recent study noting that 20 percent of low-income patients screened by two Texas family medicine practices were found to have "chemical intolerance" or Multiple Chemical Sensitivity (MCS). A number of news outlets, including CNBC, Fox News, and the Chicago Tribune reprinted a Reuters article on the study. As usual when MCS-related news is reported, there are aspects of the coverage to both applaud and bemoan.

Here's my take on the study and the coverage:

  • The essential bit of news is that a significant percentage of patients recruited from the waiting rooms of two family medicine clinics were given a screening survey and found to meet the diagnostic criteria for MCS. I'm glad that the prevalence of the disorder is being reported, because MCS is far more common than most people imagine, and an awareness of the size of the issue may spur action.

  • The study found a prevalence rate of 20% among the patients examined. This is, as the report suggests, "sizeable,” but it isn't a total surprise or completely out of line with previous findings. Previous studies of the general population have found MCS prevalence rates between 11 and 33%. Studies of specific populations have found much higher rates. A study of Gulf War veteran outpatients, for example, found a rate of 86%.

  • The report noted that the patients in the study were low-income and stated that previous studies focused on "higher-income, white people." If that's true of previous studies, I'm unaware of it. In fact, this report of a prevalence study noted that "both allergy and chemical sensitivity were distributed widely across age, income, race, and educational groups" and one published in the American Journal of Epidemiology stated that "marital status, employment, education, geographic location, and income were not predictive of reported chemical sensitivities ." Studying sub-groups for rates of chemical sensitivity has merit, but I hope all people will take the issues seriously and realize that no one is immune.

  • The author of the Reuters report states that an MCS diagnosis is "controversial." I suppose that's true, in the strictest sense of the word, but only because of the special interests with deep pockets that work hard to make it so. See the previous post titled “The Misinformation Campaign” for more information.

  • The author notes that there is no agreement on the cause of MCS. That is also technically true, I suppose, because companies that manufacture chemicals don't "agree" (at least publicly) that their products have anything to do with the symptoms MCS patients experience. It's very reminiscent of previous denials by tobacco companies that their product had any association with lung cancer.

  • The study found that the patients with chemical sensitivity had higher rates of depression and anxiety than others. This is a touchy subject among many with MCS, because those who attempt to disprove the validity of the condition generally try to paint it as a mental disorder. Fortunately, the report quoted lead researcher Dr. David A Katerndahl who noted that "some people might become depressed or anxious because of their chemical intolerance symptoms." Of course we do. I imagine that people with cancer or those injured in automobile accidents also have higher rates of depression and anxiety. A study published in the journal Environmental Health Perspectives notes that only 1.4% of patients with chemical sensitivities had a prior history of emotional problems, but 37.7% developed emotional problems after the physical symptoms emerged. See this previous post for an overview of research pointing to physical, rather than psychological causation.

  • Only one-fourth of the patients found to have MCS had been previously diagnosed. This is an important point. If people don't associate their symptoms with exposures, they don't know to avoid (or at least attempt to avoid) substances that cause their distress. Katerndahl also pointed out that chemically sensitive patients are often intolerant of many medications, which is important for their physicians to understand.

  • I found a bit of good news in Katerndahl's statement that among primary care doctors there is a growing acceptance of the validity of MCS. I pray that acceptance turns into action and that doctors will work to make their offices and clinics less toxic and more chemically safe for all of their patients.

  • The suggestion for those with MCS is that they get a referral to go see an allergist. This is, unfortunately, not likely to be of much help to most who suffer from chemical sensitivities. Although people can have both allergies and MCS, true allergies involve an immune response that differs from the detoxification abnormalities common in MCS. Appropriate and helpful medical care for those with chemical sensitivities is extremely hard to find. An interesting study of treatment efficacy found that survey participants with MCS had consulted an average of 12 healthcare providers each and found 3 to be helpful. They had spent over one-third of their annual income on health care costs. The survey rated the perceived efficacy of 101 treatments and found the three most highly rated interventions to be creating a chemical-free living space, chemical avoidance, and prayer.

Knowing how many people suffer from MCS is important. The real question, though, is how many is too many? How many must suffer before we make changes in our product choices? How many people is it OK to shut out of our churches? These are questions that deserve serious consideration.