THE CHEMICAL EDGE

MCS 101 – Part 5

THE SCIENCE: WHAT WE UNDERSTAND TODAY

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In fact, though almost everything remains to be done in institutionalizing diagnosis and treatment and providing safe shelters and medical facilities in Canada, as in most countries, today we really have a working knowledge of what causes MCS and what can be done to alleviate, if not cure it. We know this from the evidence that has been amassed by the convergence and overlap of a number of streams of work:

* research conducted  by MCS clinicians;

* research by other scientists and clinicians into chemical or toxic injury (TI) from persistent organic pollutants (POPs), for example pesticides, PBDEs (flame retardants), solvents, cleaners, adhesives, chemical weapons, heavy metals, synthetic fragrances and so forth,  on larger populations (see attached articles by me and others on those subjects);

* research in the fields of genetics/genomics, which has given us new tools to evaluate a whole variety of illnesses and conditions, including MCS; and

* research from specific medical specializations, such as neurology, immunology, microbiology, biochemistry, and endocrinology.

In addition to a substantial body of evidence from individual MCS patients, information from large-group toxic injuries has provided essential research populations.

The Camp Hill Hospital incident in Nova Scotia in the mid 1990s, just mentioned, involved volatile organic compounds (VOCs) from POPs- containing new construction materials that were accidentally vented into the hospital from an adjacent building. More than 600 people became sick at the time, and a smaller number, perhaps 200 people, developed MCS as such, including senior medical and administrative staff. A senior cardiologist was among these, and went on to head the treatment center founded in Nova Scotia.

Another group poisoning left 150 people sick at a Calgary courthouse.

One group of over 1,000 US civil servants working in a Washington DC office building were similarly injured and hundreds left with MCS.

I think we can say with confidence that were epidemiological research properly funded to trace populations of workers in toxic industries and in identified “sick buildings”, it would become apparent that a long, devastated trail of MCS sufferers has been left in the wake of the chemical age right across this continent. A number of union health and safety departments have been pioneers of MCS recognition for this reason – in Canada this includes the Public Service Alliance –  and many have fought long and valiantly for recognition and compensation for chemically injured workers, including those with MCS.

By far the largest identifiable chemical injury group population in North America has been found in the tens of thousands of soldiers returning to the United States from toxic wars in Vietnam, the Persian Gulf and Iraq, and in the hundreds of first responders dealing with major disasters, above all 9/11.  Soldiers with dire illnesses, many of whom present with MCS as well as other conditions, have brought medical and scientific researchers to MCS who otherwise might never have encountered it. Hence a substantial clinical body of knowledge is now available to compare with, contribute to and illuminate the other strands of research. Dr. Grace Ziem (http://www.chemicalinjury.net/), a prominent and pioneering physician, began her work with soldiers in Vietnam and today treats many people from her office in Maryland. Today, The Chemical Sensitivity Foundation, http://www.chemicalsensitivityfoundation.org/world-trade-center-disaster.html, also educates about and lobbies on behalf of these brave and devastatingly wounded men and women.

What has been evident in all this work is that people with MCS have damaged nervous, immune and endocrine systems and that this damage invariably leads to multi-organ system problems. The more intense the injury or toxic load and the longer the toxicity and the disease have been left untreated, the worse the damage. Consequently, many different forms of medical knowledge must be involved in treating this sort of illness. For example, a reiteration of that chilling list of Dr. Rae’s diagnoses of my own illness exemplifies not only the science that is being used today to analyze and treat MCS, but also the need to have a physicians who are competent across specializations and who understand the dynamics of toxic injury in relation to many types of illness. It is not by accident that “toxic encephalopathy” (i.e., brain toxicity) leads the list:

Toxic Encephalopathy, Toxic Effect of Pesticides, Immune Deregulation, Hypogammaglobulenemia, Allergic Rhinitis, Allergic Gastroenteritis, Autonomic Nervous System Dysfunction, Chemical Sensitivity, Chronic Fatigue, Fibromyalgia, and Pancreatitis.

TOXICITY, NEUROLOGY, BIOCHEMISTRY

What this combined body of knowledge has done is to remove, once and for all, the notion that the causes of this disease are psychogenic – that is, “emotional” or “psychological”. Toxic injury can, and often does, affect the central nervous system (CNS) and it usually produces symptoms such as depression, anxiety, disorientation, forgetfulness and fear – God knows I’ve suffered from every one of these curses. While the presence of neurotoxins and the soul-sucking struggle to survive with the disease (including the hellish gauntlet we have to run through the health care system, seemingly without end) can equally bring such emotional or ‘psychiatric’ symptoms about, what is clear is that it’s not an unresolved childhood conflict or personality problems with the boss or even rage at abandonment and betrayal by society and family that causes these symptoms of MCS as such. Hence, and this is crucial, whatever the mental and emotional symptoms that may come along, if the causation of MCS is physical and biochemical it cannot be treated successfully via psychotherapy or psychiatric drugs that don’t touch – in the case of drugs, sometimes only add to – the disease-inducing toxic burden.

Now, the study of chemical injury broadly speaking by myriad researchers, ranging from leading medical schools and schools of public health, to union health and safety organizations to the World Health Organization and the United Nations Environmental Program, has addressed the harmful impacts of ambient heavy metals such as mercury, lead, cadmium, arsenic and others, and persistent toxic chemicals such as dioxins, furans, PVCs, PBDEs, and a toxic soup of unpronounceable others in everything from our floor cleaners to  our air “fresheners”. We have known for a very long time that large doses of POPs cause cancer and other gross disorders of immune and neurological breakdown. Originally, this knowledge, based on limited early research done on small populations of adult males, lead to the tragically erroneous tolerable limits’ approach to many poisonous chemicals and to the regulations that permitted their profligate use. So for example, chemical companies and their scientists told us that pesticides in such ‘tolerable’ doses harmed insects but not humans, and we used these chemicals to grow our food and our flowers, believing a miracle of convenience had been achieved.

But what the research evidence of the last fifteen years has shown with such terrible clarity is that those limits were never rigourous or accurate, even for gross amounts. Indeed we now know that the chemical industry, with the complicity of government regulators, has conducted a vast and horrific experiment, not only on smaller creatures, but on us humans as well. These chemicals do not disappear once they’ve done their “job,” but persist on and on. They travel from their sites of application around the planet in rivers of water and on plumes of wind, and they “bioaccumulate” in animals, including humans who are at the top of the food chain.

Moreover, as we now know, very small doses of these chemicals cause neurological, endocrinological and immunological harm in developing fetuses and children, who are especially vulnerable to such damage. These chemicals build up in women’s bodies, causing them harm, to be sure; but these women inadvertently pass these chemicals on to their fetuses in utero, and to their children via breast milk. So now we can add the gestating womb to the other sites of potential danger affected by the promiscuous and reckless proliferation of chemicals. It’s not difficult to understand why the Ontario College of Family Physicians as well as organizations such as Boston Physicians for Social Responsibility have become activist foes of pesticides and many other chemicals.

These findings bear directly on the neuro-toxological nature of POPS, and to our growing understanding of an explanatory concept in toxic injury known as “body-burden” or “toxic load”:  terms used to describe the amount of toxic chemicals carried by individuals, an amount that varies according to many different factors, both external (types and degree of exposure) and internal (age, sex, genetic inheritance and other health status factors of individuals). (More on this in “Toxic World, Troubled Minds”.) 

Indeed, this concept, now in the mainstream of toxic injury research (including in the work of leaders such as Dr. Howard Hu at Harvard and Ann Arbor, Michigan (http://www.hsph.harvard.edu/faculty/howard-hu/) and Dr. Philip Landrigan at New York’s Mt. Sinai Community Health Program (http://directory.mssm.edu/faculty/facultyInfo.php?id=18189&deptid=8)

has long been central to MCS practitioners. Dubbed the “rain-barrel” or “overflowing glass of water” or “total load” theory, this “toxic burden” was hypothesized to be the major cause of MCS by clinicians long before research facilities and test procedures existed to measure it. So let’s give a gold star to those clinicians who believed the evidence of their practices, not the rhetoric of chemical companies, and had the intelligence and courage to theorize and treat what they saw, often against attitudes of outright aggression from blinkered medical peers and insurers.

But with new diagnostic techniques, from extensive new types of blood and tissue testing through many forms of new medical imaging, including SPECT scans and functional MRIs, the concept is no longer hypothetical. These diagnostic tools are proving what the clinical leaders have been hypothesizing all along. Now we are able to actually measure the extent of an individual’s body-burden, his or her or total load, and we can concurrently track the extent and nature of damage to many systems in the body – in tissues, in the blood, organs and bones, and, most recently and crucially where MCS  is concerned, to the central nervous system. These new technologies prove beyond a shadow of a doubt that MCS is not “in your head” but in your nervous system; that a heavy toxic burden, absent the capacity to cleanse the body, turns into a very serious and disabling neurological condition which in turn can affect every other system and organ in the body.

Let me cite my case again as an example: It turns out I have a really major load of chlordane by-products in my blood and tissues, enough, I was told in no uncertain terms, to guarantee me cancer if I can’t get rid of it. But it’s a small load by comparison with the DDE (DDT derivative) that has saturated me too, and I got that in my childhood in the 1940s and 1950s, and it’s stayed with me ever since. These residues were measured by a chemical panel done by Acu-Chem Labs for Dr. Rea at the EHCD, from blood drawn at the center’s lab. Tissue biopsies can provide even more accurate counts. My pesticide body-burden is very carcinogenic and neuro-toxic — and there is nothing psychological about it.

In MCS, as in all types of environmental illness, the science is far ahead of the broad medical practice. At a time when our environment is growing ever more saturated with chemical toxins, too few medical practitioners keep up with the science of environmental medicine, or enter the field because incentives are so low, or actually negative. Unfortunately, then, for both patients and practitioners, most of the authoritative tests are extremely expensive ( I spent $14,500 on tests and didn’t even do the most expensive ones), some thousands upon thousands of dollars, because they are still largely research tools. Hence they remain unavailable and/or uninsured for most people, and most physicians are ignorant of them. This then makes it very difficult for most MCS sufferers to prove to ignorant or hostile physicians what is causing their many health problems; or, alternatively, makes it very difficult for aware and sympathetic physicians to get the evidence to force an appropriate response from the health care system or private insurers.

One extremely vexing problem for the understanding of MCS over the past decades has been a certain number of crusading physicians who  (for a host of reasons that in retrospect put their mental balance and professional objectivity into question) have insisted that MCS is a psychological illness and/or a psychiatric hallucination. This view has been laid to rest among toxic injury experts, even if a few of its proponents hang on. I will be posting a longer piece on psychiatry, psychology, trauma and related issues and MCS – both in the disease and in attempts to conjure it away – in the future because this point hardly scratches the surface of that subject. But truly, the key point is that MCS is an illness of toxic injury, not of emotional wounds, however much the stress of such wounds may contribute to weakening the system overall.

Now among many intelligent and thoughtful physicians who could see and acknowledge a real issue of chemical hypersensitivity, the dominant explanation for MCS in the 1970s, 1980s and early 1990s was that the immune system had broken down under a toxic burden of some kind – be it chemical or pharmaceutical — and hence made sufferers vulnerable, or “hypersensitive” — to chemicals in ways most people were not.

Since the late 1990s, and very much into this decade, with the development of the research tools I’ve just mentioned, the paradigm has expanded and shifted somewhat. Today most experts believe that while immunological difficulties almost always accompany MCS, it is first of all a pathological inflammation of the central nervous system; involving inflammation of the brain and damage to the blood-brain barrier; caused by chemical injury that has lead to an intolerable body-burden of toxins. This produces malfunction in brain biochemistry that also affects many other systems in the body.

Dr. Martin Pall, a professor at Washington State University’s School of Molecular Bio-Sciences, and a collaborator with Dr. Grace Ziem, has advanced the theory that the symptoms of MCS are initiated by short-term stressors that can increase nitric oxide

which acts through it oxidant product peroxynitrite to initiate a biochemical vicious cycle known as the NO/ONOO- cycle which is responsible for producing chronic disease and for generating the symptoms and signs of illness. The local nature of the cycle, means that its localization to different tissues in different individuals can produce much variation in symptoms and signs among individuals. Many other chronic inflammatory diseases may be caused by this mechanism depending on the tissues impacted and other factors. The complexity of the cycle makes it a challenge to down-regulate but complex treatment protocols using multiple agents are the most promising approaches. The NO/ONOO- cycle theory has created much interest in the international biomedical community and has been recently presented in many national and international meetings. (http://molecular.biosciences.wsu.edu/faculty/pall.html)

Because the nervous system is the master system of the body, disrupted brain biochemistry can, and usually does, result in multiple organ-system problems, with immediate disorders in immunity, endocrinological balance and respiratory distress. Also included as definitional of MCS by some clinicians are vasculitis — vascular inflammation that leads to reactive hypoxia (oxygen shortage), which of course affects every system and function in the body.

The process of ongoing research and re-evaluation of MCS has major similarities with a similar process that has been taking place with respect to ME – the acronym for for Myalgic Encephalomyelitis, which is the European name for what was wrongly and damagingly dubbed Chronic Fatigue Syndrome, another grossly misunderstood and denied illness, and a condition from which many MCS patients suffer as well. What’s in a name you may ask? This statement answers the question, and is equally true of MCS:

”…If [ME/CFS] were called chronic neuroinflammatory disease, then people would get it. Up until now nobody’s been willing to change the name, but now there’s proof that inflammation occurs in the brain…. There’s evidence that the patients with this illness experience a level of disability that’s equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, patients with multiple sclerosis….*

Nancy Klimas, November, 2006

(There are a number of sites with good information on Myalgic Encephalomyelitis. Please go to the “Tired and Hurt: CFS/ME and Fibromyalgia” page for links. )

GENES AND ENZYMES

So now that we have a handle on the issues of neuroinflammation and toxic total load, what’s new in our understanding of why some people react to toxicity by developing MCS while others don’t when faced with exposures to similar toxins?

We now know that our bodies can hold only so much in the way of toxics before they break down. This means that literally anyone, saturated with enough mercury or pesticides or lead or solvents or mold (mold toxins have the same chemical structures as aldehydes, hence some solvents and petrochemicals, when stored in the body, which is why MCS  people are so mold sensitive) or, indeed, a number of heavy-duty pharmaceuticals, will get very sick. In the last couple of years, government ministers and politicians in Europe and Canada have taken tests that show all of us are carrying many chemicals inside us. We are all affected to a certain degree. But some of us are affected a lot more seriously than others.

The sick soldiers who came back from the US wars in Vietnam, the Persian Gulf and Iraq were healthy young people to begin with, but they were simply overloaded with too many chemical toxins — whether the dioxin Agent Orange or biochemical warfare “antidotes” or depleted uranium or smoke from the hell-fire fumes of 600 burning oilwells  – and they succumbed. By the same token, workers in a variety of industries employing chemicals of many different kinds (from solvents to micro-wave popcorn emollients) are also at much greater risk of serious illness than people working in chemically benign situations. Nevertheless, even in cases of toxic exposure, some people develop illnesses and other’s don’t, or, in any case, not in the same ways. 

Some people do become very sick, but much later in life. They may develop various cancers, for example. Other people develop autoimmune diseases such as lupus or crippling arthritis or agonizing fibromyalgia. Others develop nervous system problems: exposures to some pesticides as well as certain anaesthetics can cause hallucinations worthy of acid or magic mushrooms; and chemical exposures often result in “brain fog”, a drop in cognitive ability that can be stunning (in both senses) in its severity, mimicking, as I noted, psychological or psychiatric disorders. Still others develop respiratory disorders, or lose their vision, or develop gastrointestinal problems or recurring genito-urinary infections or cardiac distress or disabling enervation or some combination of the above.

So what determines which people will come down with the MCS form of disease (which often includes and/or mimics the others mentioned above)? Well, there is doubtless more to be learned, but this news just in from the field of genetics: Canadian research released in 2004 by the previously mentioned stellar group in Toronto has shown, and German research released in 2007 has confirmed, and clinical practice has reconfirmed thousands of times over that the particular response of people with MCS to toxic chemicals (including from fungal and pharmaceutical sources) is hugely related to our DNA. Surely one of the most important science stories of 2008 was the discovery that we do not have a single human genome. More than a million possibilities of certain variations of genomes exist. And this means, among other things, that we respond to environmental poisons in different ways, including developing different kinds of illnesses, even under similar conditions. 

We are beginning to understand that most individuals who develop MCS have “polymorphisms” or variations in the genes that code for particular enzymes – those in the Cytochrome P450 system that expel many chemicals from the body in Phase I detoxification – and those that code for the capacity of the body to conjugate toxins with water molecules and hence make them less poisonous in the elimination process in Phase II detoxification. For many of us, these polymorphisms are inherited. For others, toxic injury is so grave it actually warps our DNA. In both cases, without these crucial detoxification enzymes and conjugation capacities we are not able to down-load the toxic crap of the chemical age, our body burden grows unbearable, our nervous and immune systems are damaged as are many organs in which toxins are sequestered, and we develop MCS. My genomics test, done at the Dallas clinic, confirms that I am one such person. To hell with privacy, here’s the relevant quote from Dr. Rae’s report:

“Ms. Burstyn did the DetoxiGenomic Profile test. Her Phase I profile shows important polymorphisms on genes CYP1B1 and CYP2C9. The first of these is responsible for the 4-hydroxylation of estrogen as well as the activation of common environmental toxins such as polycyclc aromatic hydrocarbons (eg. products from cigarette smoke, car exhaust, and charbroiled foods), polychlorinated biphenyls (PCBs) and aflotoxin 1. In addition, this polymorphism creates difficulties with detoxing a number of common drugs, including several common anti-inflammatories, anti-depressants and antibiotics.The second of these polymorphisms makes it more difficult to process a long list of drugs including drugs to which Ms. Burstyn has had adverse reactions and that have induced anaphylaxis (e.g. sulfa drugs) in the past.  All these findings, including problems with estrogen metabolism, are entirely congruent with Ms. Burstyn’s symptoms and other test findings.

Ms. Burstyn’s Phase II profile shows polymorphisms on genes COMT (methylation — affects liver and gut), NAT2 (both slow and fast metabolizer variations, involved in acetylation, affecting liver and gut), an absence of gene GSTM1 (responsible for all-important glutathione production, affecting liver and kidney) and SOD2 (oxidation protection, affecting mitochondria). Once again, we see a clear fit between these polymorphisms and Ms. Burstyn’s most serious symptoms and affected organs, including her life-long tendency to tire easily, and her presenting condition of unrelenting fatigue (i.e., mitochondria).”

In fact, I was stunned by the way that this genomics test, done by a laboratory that had no history or other information on my case, predicted the substances that make me sick as well as the affected organs and tissues in my body.

MCS is, therefore, a disease in which a genetic inheritance or genetic injury, that is to say a genetic predisposition, is triggered by environmental factors.  Note that this makes it very similar to a whole raft of other, better known diseases that we have recently understood in the same terms.

Because the vast majority of the toxins in our contemporary environment were not around during our evolution, many of our parents’ ancestors, also missing these genes and enzymes, were evidently able to make their way relatively unharmed and were able to reproduce generation after generation. But with the advent of highly toxic man-made chemicals this has become a greater and greater problem. As more chemicals saturate our environments, indoors and out, and as more of us encounter them in greater and greater concentrations, our different genetic capacities come into play more and more.

In my case, for example, I’ve known for a long time that I have very high levels of mercury in my body. After a decade of attempting to rid myself of it, I still have a load ten times larger than that typical of healthy individuals – not being able to detoxify has hade it really hard to lose the mercury. But I also learned in the last four years, from my parents and from a childhood peer, also a writer, who is suffering from ME-CFS, that when my mother was pregnant with me, and in my early years on Kibbutz Sasa, then subsequently in Moshav Regba, DDT was in liberal use. My mother and I were exposed to it directly, and my father came home soaked in it at various times – times I can now correlate to periods of acute early childhood illness. But I was still shocked to learn how much pesticide poison I am still carrying around. From Dr. Rae’s report:

Beta-BHC, Heptachlor Epoxide, Oxychlordane and Transnonachlor were all detected at toxic levels. These are highly carcinogenic chlordane derivatives, and must be removed if this a patient is to avoid developing cancer. In addition, DDE, a derivative of DDT, was found at 3.4, a very high, dangerous level. These findings are very significant, and alone would be sufficient to cause illness of the severity of that experienced by Ms. Burstyn.

Now, my mother developed MCS before me (she got the DDT, too), and her family has a history of liver problems of various kinds. My father’s family has a history of allergies. So I was, perhaps, a sitting genetic duck.

But before you decide that you and your loved ones are safe, remember that many researchers are convinced that serious toxic injury can damage DNA even if you weren’t born with genes like mine. Which is to say that while inherited DNA appears to play a big role for many individual sufferers, any and all of us may be potentially vulnerable to MCS if exposures are severe enough.