Monday, January 28, 2013

To Trash or Not to Trash

A friend recently asked me this question:

"What is the Christian response of someone who DOESN'T have MCS, is trying to live more chemically aware, and is blind-sided by a purchase?  I bought a box of 40 kitchen trash bags, and didn't realize they were fragranced until my kid opened the box and used one in our kitchen trash can last night. Do I go ahead and "take the hit" so that others don't have to and use up the bags?  Do I give them to the struggling young family across the street (explaining why I'm parting with them, of course, so they can decline them if they want) and then go buy unscented bags for myself?  Do I send the remaining bags straight to the landfill?  The bag manufacturer put a little logo on the package that I overlooked that says ‘With Odor Block.’  Had I seen it, I would have known that meant scented and not bought them, so I don't see blaming the manufacturer. I'll probably send an email to let them know I didn't mean to vote with my wallet for that product, just so they know. They're really strongly fragranced and I don't like them one bit, but I hate being wasteful and it seems abusive to give them to someone else."

What do you do with a toxic product that is somehow in your possession?  It's a good question. As someone with chemical sensitivities, keeping fragranced or otherwise problematic products in my house isn't an option, but I've wondered about giving those sorts of items to others. One argument for doing so is the fact that most people use those products anyway, with or without my assistance. In the end, however, I've personally decided that I can't in good conscience give people things that I believe to be toxic, despite the fact that they choose to use the same or similar products themselves.

It wasn't easy at all for me to come to that conclusion. I hate waste, believe in generosity, and have always considered myself pretty good at re-using, recycling, and re-purposing things. To throw something away that someone else would find useful feels wrong on many levels. I've come to believe, though, that I need to be a steward of the knowledge I've acquired about chemical toxicity. Whether other people know, believe, or care that products harm them doesn't change the fact that I do.

This issue came up at Christmas. My college-aged son was home and opened a gift that was highly fragranced. It immediately went into the garage, to remove it from my airspace, and we began discussing its future fate. My son mentioned the possibility of giving it to someone else. I try not to give my young adult kids too much direct advice unless they ask for it, and I don't remember exactly what I said. I do remember, though, that at one point my son asked, "You want me to just throw it away, don't you?"  Yep, I did. He threw it out, which I know wasn't easy for a poor, struggling college student watching every penny. I truly believe it was the right thing to do, though, and I really appreciated his willingness to do it.

The specific issue of trash bags has also come up in our family. My hubby unintentionally came home with some fragranced bags once. I decided that trash bags were sort of a special case. They were going to be thrown out anyway, so they might as well be filled with other trash before making their trip to the landfill. We kept them in the garage, filled them out there, and they never came inside the house.

Sometimes a problematic product will offgass over time and can be somewhat redeemed. The process of redeeming versus disposing of something is addressed in the Bible. In Leviticus 14:37–53, God gave the Israelites detailed instructions on how to proceed when they found mold in a house. The instructions included scraping walls and removing affected stones to try to remediate the problem. If the mold continued to spread, the house was to be torn down and taken outside of town for disposal. When throwing something away seems like poor stewardship of resources and somehow ungodly, I remember that passage. In God's hierarchy, people are above things, and when things threaten human health, sometimes they just need to go away.

Monday, January 21, 2013

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 ProgressAlison 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.

Monday, January 14, 2013

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.

Monday, January 7, 2013

The Coach

This is the time of year when many professional football coaches are hired and fired. I've been reading about coaching changes this week, which reminded me of another coach who made the news a number of years ago. This is his story.

Dan Allen was the head football coach at The College of the Holy Cross in Worcester, Massachusetts. By all accounts, Allen was a fine Christian man. He founded chapters of the Fellowship of Christian Athletes at two schools and was active in the organization.

In the spring of 2001, the gymnasium floor in the field house where Allen's office was located was resurfaced. The process took about a week. Allen was not warned about the toxicity of products used or told to avoid the area.

Allen was 45 years old and in good health at the time. When the resurfacing began, he experienced dizziness, headaches, nausea, and disorientation. In the months that followed, he had weakness and fatigue that were debilitating enough that he began to search for medical answers. His headaches became chronic and he lost feeling in one of his toes.

Allen began a series of medical tests, but the diagnosis was elusive. The as-yet-unnamed condition began to affect his neuromuscular system and he developed mobility challenges. He needed a cane to walk.

In 2002, Allen took a four-week medical leave of absence to seek diagnosis and treatment. He was eventually diagnosed with Multiple Chemical Sensitivity, likely set in motion by the solvents used in resurfacing the gym floor. He returned to coach the final four games of the season, but his health continued to decline. Allen and his wife discovered, as do many with MCS, that the treatments that proved most helpful were not covered by health insurance. They depleted their life savings and took a second mortgage on their house.

By the beginning of the 2003 football season, Coach Allen was unable to walk, dress, or feed himself. He couldn't move his right hand, but with his left, he was able to drive an electric wheelchair. In May of 2004, Dan Allen lost his fight. He passed away at his home at the age of 48, leaving a wife and three children behind.

There are some important points raised by Dan Allen's story. The first is that chemical injury and MCS are very real. Special interests with deep pockets fight hard to invalidate MCS (see the previous post entitled The Misinformation Campaign for more information), but the truth is that common chemicals can cause a huge array of health problems and can even kill. The author of a Boston Globe column entitled "This Nice-Guy Coach Got a Very Bad Breakput it this way:

"Imagine being hit with this. And then imagine being told by members of the medical establishment that you did not have a certifiable disease and that you may instead be suffering from 'a psychosomatic disorder brought on by stress.' Some psychosomatic illness. The man is dead."

Another point to take from Allen's experience is that no one is too strong to be impacted by toxins. In another Boston Globe story, entitled "Crusader's Toughest Fight," Allen is quoted as saying, "It has been a year and a half of pure hell. I have watched myself deteriorate to the point where I can't walk. Here I am, supposed to be this macho football coach. I was invincible, right? Nothing was going to happen to me. And the scary thing is, it could happen to anybody."

Allen wanted us all to learn from his misfortune. In the previously referenced column, he was quoted as saying, "I really believe some things happen for a reason. Maybe because I’m a public figure, my role is to get information out there on MCS."

Allen's family has continued that mission. They began the Dan Allen Foundation, which they term "A Foundation for Faith, Family, and Hope.”  On their website they state that they exist "for the purpose of raising awareness of Multiple Chemical Sensitivity Disorder (MCS) and similar neurological disorders caused by exposure to environmental toxins, chemicals, and pollutants.

We can honor Dan Allen's memory by limiting our use of toxins and by warning others of the chemicals that may harm them. The job of a coach is to instruct and guide. If we allow Allen's story to change our behavior, he will still be coaching, and his death will have not have been in vain.