THE CHEMICAL EDGE

MCS 101 – Part 6

Without doubt, one of the most painful and frustrating realities for MCS sufferers and their families has been the aggressive resistance to the recognition of MCS, in theory and in practice, by many parts of our health care systems, whether its government funded health care, as in Canada, or privately insured health care in the United States. As treatment for the condition becomes ever more effective and systemized, and as the acknowledgement of the scope and nature of environmental harms to health becomes ever better documented in the leading institutions of health care research – from Harvard University to the World Health Organization — this denial becomes ever more cruel, stupid and unjustifiable.

Indeed, to repeat a point that cannot be emphasized too strongly, the science and research on causes and treatments of environmentally-linked diseases – conducted by pioneering scientists and physicians — including on MCS are much, much farther ahead than the mainstream of clinical practice in the vast majority of doctor’s offices and hospitals, and certainly than in the government or private insurance offices that calculate fee schedules and remuneration for medical procedures.

Why is this the case? Why is there so much resistance to acknowledging and dealing with MCS, and with other environmentally linked illnesses? In this section, I want to suggest some answers to these questions.

MAJOR OBSTACLE #1 – CORPORATE LIABILITY AND DENIAL 

It’s common knowledge today that Big Tobacco knew for decades that smoking was a killer – indeed, that the chemical additives they put in commercial cigarettes made them far more addictive and deadly than any old fashioned, organic tobacco ever was. But Big Tobacco’s cynical and dastardly fight to deny this fact even as it promoted cigarettes to ever younger people, now well-documented and exposed, was based on the fear that liability for millions of deaths would end up costing billions upon billions of dollars for those companies – which it has.

Now, were the chemical and pharmaceutical industries –- in most cases linked together through corporate relationships of co-ownership –- ever to admit how much suffering, disability and death their products have caused, or if public or medical authorities were to assert this and make it stick (not a difficult task, where the will and funds exist), the costs the tobacco companies have had to pay out would pale by comparison to those for which the chemical industries would be liable. And the annals of the chemical companies are full of studies that show that everything from aspartame to flame-retardants is toxic and extremely dangerous to our health. The Erin Brocovitch story is one tiny example of such liability, proved. But in the absence of powerful, public sector regulations, chemical police and a judicial system that back them up, every such victory is only won with enormous dedication by individuals and communities, with big legal resources and a proverbial ‘smoking gun’ that so ‘hot’ that even a non-expert court can find against it.  So it’s no surprise that Big Chemical and Big Pharma fight every single individual and group accusation of many kinds of harms; that in general they remain ahead of the challenges to them; and certainly this explains why have fought the recognition of MCS – a particularly damming condition of toxic injury — tooth and nail.

As well, given how powerful Big Chemical (a branch of Big Oil) and Big Pharma are in setting and controlling science research agendas and medical school funding – especially as government and public monies have shrunk by up to 90 per cent over the last thirty years; given the perks they dole out to physicians and the reliance that modern conventional medicine has developed on pharmaceuticals; given the close relationships between these industries and the most powerful politicians (including the present Canadian Prime Minister and US president) – given all these factors, the sheer weight mobilized against admitting all forms of environmental illness has been enormous and unrelenting, even as this pressure remains, by design, completely invisible to the public. Out of sight, out of mind. Pay no attention to the man behind the green curtain. The most powerful forces are the ones you never see and hence, almost never think about.

When contemplating the power of the corporacracy, bear this in mind: a recent study by the World Watch Institute, found that more than 92 percent of the authors of books which were skeptical of the need for environmental protection, or even concern, written over a thirty-three year period, turned out to be affiliated with conservative “think tanks” – despite the fact that many originally claimed to be independent of politics. (“’The popular media often regard environmental skeptics as independent experts, despite their connection to industry-funded campaigns that seek to de-legitimize sound environmental science reports, especially on climate change,’ says lead author Peter Jacques, an environmental politics professor at the University of Central Florida. “) The collusive or captive scientists and researchers of the chemical and pharmaceutical industries are easily as, if not more, influential and camouflaged.

MAJOR OBSTACLE #2 – OUTMODED MEDICAL PARADIGM AND PERVERSE INCENTIVES

Now, why MCS has had, arguably, an even more difficult time than other environmental illnesses, at least in many jurisdictions, has to do additionally with the kind medical paradigm on which our system is based. A deep resistance to the need for a paradigm shift by the most invested and affluent members of the medical community has contributed to a synergy of resistance with the “chemical liability” factor and the pharmaceutical investment factor (see #3).

Our medical system has long been based on an outmoded and incorrect paradigm that mechanically divided the body up into independent organs and systems, and created stand-alone specializations and specialists for each one — hence ear-nose and throat, cardiology, dermatology, endocrinology, nephrology and other like specializations. And so patients are treated more like layer-cakes than whole human beings. My late mother-in-law, for example, was prescribed eleven different medications in her last years, each one for a different disease or system. The interactions between these drugs and their toxic load were real problems for her, as for many other people with chronic illnesses.

The single-organ specialist system has produced an army of wealthy, powerful physician specialists – these are the best paid, and most powerful in colleges of physicians and surgeons. These people are highly skilled technicians, and I definitely want them on my side if I break my leg or have a heart attack. But they are often literally incapable of seeing and treating MCS if they stay within their training boundaries. Say it again: MCS is a multi-system illness with multi-organ manifestations that mimic other diseases but cannot be treated with many of the modalities for the diseases they resemble.

Powerful and multifaceted critiques of this mechanical and dis-integrated approach to the body have been around for a long time, and have come at least as much from the best practitioners within medicine as from other health professionals and scientists outside it. In fact, the minority of doctors who are, for whatever reasons, open-minded and motivated to overcome the inherent inabilities of the old paradigm to address today’s chronic and environmentally linked illnesses have been the pioneers of new paradigms of understanding both health and health care. And many doctors who still hang on to that paradigm are actually frustrated and unhappy because they can’t really help their patients to heal.

Indeed, the main tenets of these critiques have been been embodied in the conclusions of government commissions of enquiry and health care reform recommendations from academic and clinical experts in all provinces and federally over the last thirty years, and their insights have been shared by academic authorities around the world.  I should know, I used to incorporate these conclusions into major policy speeches for Ontario’s minister of health in the early 1990’s when I wrote those speeches and they were old news even then. 

Perhaps the critique and alternative that has given me the most hope, coming from the land of physicians,  is a recently authored article by Dr. Stephen J. Genuis, at the University of Alberta. It’s called “Medical practice and community health care in the 21st Century: A time of change.” (Public Health (2008), doi:10.1016/j.puhe.2008.04.002) and the full text of it is posted on this site. Like a number of sister critiques, Dr. Genuis has not neglected a crucial emphasis on social factors when assessing the causes and risks for disease. We know that health and wealth correlate, and that stress – the biochemical results of it, that is – contribute greatly to all disease, and less affluent people have more stress. But finally, we are also hearing of the crucial role played by a series of other factors:

• genetic/epigenetic predispositions (for example, I have those pesky polymorphisms of the Cytochrome P450 system and the conjugation systems, so my body doesn’t detoxify chemicals on its own, which predisposes me to MCS);

• the environmental trigger or insult (I have a huge body burden of old DDT from my agricultural childhood 1948-1955, and more recent chlordane by-products which I assume I accumulated in a year’s residence in Cincinnati in the late 1990s, after which I did have my huge MCS “crash”… and a very elevated level of mercury and lead); 

• the crucial importance of addressing nutritional status/deficits  – again, just to use  my own example: I was deficient in many key nutrients, the pattern of which pointed to pesticide and heavy metal poisoning (then confirmed by testing). I have a lot of damage to my gut, so I did repletion IVs at the EHCD, which alone made a huge difference; but also had custom nutritional formulas developed on the basis of nutritional and metabolic testing, and to assist various dysfunctional detox and metabolic pathways;

• the crucial importance of addressing toxicity through detoxification — in my case chemical, serious, with a variety of means, from sauna to nutrition;

• the use of pharmaceuticals to achieve certain short-term objectives but within the context of addressing the factors above. 

The critique of conventional medicine with its almost exclusive emphasis on drugs and surgery has been especially compelling with respect to chronic illness, which has increased by leaps and bounds decade after decade; and is linked, in my belief as well as others, to chemical toxicity. It is also linked many childhood developmental disorders. To single out just one substance, particulate matter from car exhaust and fossil fuel emissions, we already have overwhelming evidence that it does cardiovascular damage (proportionate to the distance people live to major sources of emission), worsening quality of life and shortening lives for millions around the world. ENN reported recently on a study lead by Dr. Lilian Calderon-Garciduenas of the University of North Carolina that showed dogs who inhaled such particulates, developed damaged brain cell genes in as little as four weeks.

As Dr. Calderon-Garciduenas explained, “exposure to air pollution causes inflammation in the respiratory tract, which lets tiny airborne particles and metals enter the central nervous system and brain. This, in turn, causes oxidative damage and DNA changes in brain cells. Air pollution breaks down the vital blood-brain barrier that usually keeps toxic substances away from the brain. This is extremely important because once you break down the barriers, you have an entrance for pollutants directly to your brain.” By the way, this is what happens to people with MCS too. The researchers also found signs of lung damage in children as young as 4 years old who were raised in polluted Mexico City. What we are learning faster and faster today is only the tip of the environmental pollution/illness iceberg. Please check out the article (http://www.statesman.com/health/content/shared-auto/healthnews/hatt/512732.html;COXnetJSessionID=1FoM8iLaWmakFLZ1tokndEgCmdMyG2NxmwRs4c81TE1N9aDDFboX!664728683?urac=n&urvf=10657075327460.71838611244) and to learn more about the health risks posed by air pollution, visit the Centers for Disease Control and Prevention or the World Resources Institute.

Yet, despite the heroic physicians in specialized research facilities (Hospital for Sick Children, Toronto, Mt. Sinai Community Health in New York) and universities, and a small number of brave doctors who treat environmental harms in their practices, at the clinical level most physicians still have no idea how pollutants are involved in this panoply of modern diseases, nor how to assess their damage, nor what to recommend to address this damage. Instead, more and more, drugs are prescribed to “manage” certain conditions. Of course these can be life saving, and I’ve been beyond grateful on a couple of terrifying occasions for the lifeline they extend. But for many people, whether children with asthma or adults with depression or seniors with dementia and arthritis, drugs are not effective in eradicating the problem or actually restoring function. For many too, especially those with genetic polymorphisms that don’t tolerate many drugs, ‘management’ doesn’t come without costs as ‘side-effects’ create new and daunting problems.

As these chronic problems multiply — not only in the population but also within individuals — this critique of disintegrated medicine takes on ever-greater weight. The need to involve other allied health professionals who know about nutrition, about exercise, about stress and mental functioning, about social and environmental impacts, in health care is one evident conclusion that was reached by health system reformers and commissions of enquiry long ago, and that need is more compelling than ever today. But it’s clear we need more than this: we also need an overhaul of how medicine is taught and practiced by physicians and nurses. Increasingly, we can see that compromised nutritional status always accompanies chronic illness and needs to be strategically addressed if that illness is to be reversed – but most docs know nothing about this, many still dismiss its importance outright, and our government and private insurance systems want nothing to do with it, insisting that nutritional therapy is “non-essential”. Increasingly we see that toxicity on the one hand, and genetic and epigenetic factors on the other hand, interact with environmental conditions and promote disease. There are so many important ways to address these factors too, but the vast majority of physicians of all kinds are entirely unaware or indifferent to these issues and treatments. 

So why have the needed changes have been slower than glacial in coming? As always, as we trace our way through the medical labyrinth, we end up following the money, and, with the money, the power. We discover that the economic incentives in our system are grotesquely perverse and feed a vast institutional inertia that all too often smothers or starves or punishes initiatives and practitioners who seek the right kind of change. It’s very simple, really: Our system pays its top dollars to narrow specialists; they provide very expensive secondary and tertiary care of a pharmaceutical and surgical nature; they are accorded the most prestige and power, which they then jealously guard in their Colleges and reproduce in medical schools; governments won’t challenge the Colleges, in fact they tend to kow-tow to them the guild-keepers of medicine. The fee schedules and diagnostic codes that insurers – public or private — pay are policed by these colleges or, where they exist, by doctors’ unions (OMA, AMA) sometimes with the active collusion of government bureaucrats. And anyone who tries to change this system – despite having science and clinical evidence on their side — is attacked with the full force of a group of powerful, privileged people who have come to believe their own myths — that they are our saviours and thus the single most deserving and entitled group in society.

So as chronic illness rises, this leaves the real generalists, the family physicians who provide primary care, and the small band of brave and brilliant integrative physicians, with ever-shrinking remuneration, impossibly stressful battles with their Colleges and insurance companies (see page for Appeal For Support From Dr. William Rea, Environmental Health Center, Dallas) and backbreaking patient rosters.

Public and private insurers tell physicians that they have to keep their patient interviews down to 10 or 15 minutes – that’s what they are paid for. Try to address a set of multi-system health issues in a patient with chronic illness, or even try to do preventive health education in that time slot, even in sequential interviews. It’s impossible. Is it any wonder that overworked doctors or ignorant doctors often grasp at the straw of new kinds of drugs – say, anti-depressants — because they know there is no way they can offer better help within the existing parameters of the system?

This situation has created acute problems for Canadians with MCS especially, for, as I have stressed several times, this disease cannot be treated successfully by pharmaceuticals or by surgery — the two principal insured and revered modes of today’s conventional medicine. In fact, MCS patients react to many drugs as toxic “incitants” and often aren’t able to use most of the pharmacopoeia available to most people. This creates health challenges – not infrequently, life-threatening crises — for us, as we search for ways to deal with whole-body inflammation, chronic viral, bacterial and fungal infections, circulatory and cardio problems, fatigue and fibromyalgia, pancreatitis and diabetes, respiratory disease, profound depression and anxiety, and so forth — without the use of drugs that others are able to take routinely for these problems, and without physicians who are capable of and willing to help us.

Most medical specialists today would have to undergo extensive new learning and training to deal with MCS, as well as receive an attitude transplant. And there is no money to be made by the pharmaceutical industry in treating MCS at this time. We very much hope that in the future, there will be effective pharmaceuticals based on some of today’s neurochemical, genetic and enzymatic discoveries. This would be great. But one has to acknowledge a condition before one develops a treatment for it, and right now, despite the heavy weight of research, the old investments and their incentives are mostly pointing in the other direction.

MAJOR OBSTACLE #3 – MEDICAL AND PHARMACEUTICAL MONOPOLY ON INSURED SERVICES

As well as whatever pharmaceuticals MCS sufferers can take to help with an array of health problems, to address the MCS per see, MCSers urgently need non-pharmaceutical treatments, and the system’s decision makers have refused to provide or insure them. And here we run into Major Obstacle #3: the tight monopoly that MDs and pharmaceuticals have on public and private insurance dollars.

Since the mid-twentieth century, the pharmaceutical industry has become the major driver and shaper of medical practice and the darling of insurers, public and private (though now the cost of new drugs is stressing the love-in to some significant degree). It doesn’t take a Ph.D. in logic to figure out that if the modalities that do currently help MCS sufferers both in the short and longer term –- we are speaking of a host of detoxification methods, oxygen, nutritional supports, pesticide-free diets and environments, acupuncture and other energy therapies, lymphatic drainage techniques, and a variety of nervous system supports, adopted or recommended by MCS medical clinicians — if these are acknowledged and made part of insured services for people with MCS, well, then … the floodgates would open, and other people with chronic diseases would demand equal treatment and access to these modalities.

No government – to a one in cutback mode for decades – and no private insurer – to a one in business to make profits – wants to take on new costs. But in comparison with some of the costs of current pharmaceuticals or even homecare, MCS costs are modest. Ontario is paying tens of thousands of dollars per month in pharmaceutical costs to (or for) people with diagnoses as different as arthritis/fibromyalgia and HIV-AIDS. Most people with acute MCS would need medical subsidies that are considerably less than this sum. But if insurers have to pay for non-pharmaceutical treatments, paying for these nutritional supports and non-physician services would create a precedent completely unacceptable to the medical guilds and the pharmaceutical companies. For it would open the way to public demand for insurance dollars — government and private — for these important health services for a host of other illnesses – indeed, for the kind of health care reform that has been advocated by experts for decades — and this would break the medical and pharmaceutical monopoly on those dollars. The public pressure on the damn of this monopoly is building. It’s probably the main reason for Bill C-51, which would place nutritional supplements under pharmaceutical company. The medical and pharmaceutical monopoly on insurance funds has been the biggest, fattest golden goose for a very long time now. Killing that golden goose is …well, we can’t have that, no matter the cost to sick people.

When Thomas Kuhn wrote his germinal book, The Structure of Scientific Revolutions, and introduced the term “paradigm shift” into the public lexicon, he noted that when a scientific paradigm could no longer account for anomalies and evidence that directly contravened its premises, it finally shattered. Then a new paradigm took its place  and a paradigm shift occurred.  What we must realize today is that the old paradigm is bankrupt – the best scientists and the best medical clinicians laid it to rest almost half a century ago, and the clods on top of its coffin are pretty are as tall as a mountain by now. But investments in the institutions the old paradigm created, the power of its senior controllers, and the money of the industries that feed it all resist that necessary shift, sometimes knowingly and calculatingly, sometimes simply with blind, ignorant inertia.

So there will be no automatic paradigm shift just because the old paradigm is bankrupt, and there’s not point just sitting back and hoping it will come of its own accord. Only citizen action and a new movement for public health and social medicine that includes the doctors whose work has paved the way for it are going to accomplish that. It’s long over due.

MAJOR OBSTACLE #4: MORE WOMEN THAN MEN HAVE MCS

While many men do have MCS – here in my small city of Peterborough two live within five square blocks of me – the ratio of women to men with this illness is 3 or 4 to 1. This was one of the “mysteries” of the disease for a long time. I remember speculation in the 1980s about women’s hormonal status predisposing them to systemic candida (a fungal infection), this weakening the immune system, and so forth. But I no longer believe this to be the case. In the absence of good research on this matter, I think the higher incidence among women may be related to two other factors. First, women have many more estrogen receptors throughout their bodies than men. And a great many of the persistent organic pollutants (POPs) which have poisoned us are what is known as “estrogen mimickers” – the have a molecular shape similar to estrogen, and are hence grasped by human receptors. So Women attract and hold many more of these toxins. Second, women have a higher proportion of body fat, and many toxins are stored in that fat as well as on the receptors of organs, so retention is greater as well. Third, women undergo what is, in the absence of good health, a major physical upheaval at menopause, and a great many women report developing full-blown MCS, as opposed to lower-level symptoms, at the time of menopause.

Whatever the reasons – and with some funding dollars, I suspect this will not be a difficult conundrum to unravel – it is not news that women’s health priorities have been, and continue to be, very significantly lower on the medical and social priority list than men’s. As a women’s health activist and as a health consultant in the 1980s and 1990s, I read with dismay, and regularly reported on, the ways in which women’s specific health needs, from cardiac care to gynaecological issues to pharmaceutical testing, were routinely given the shortest of shrifts. While more attention has lately been paid to these established issues, the fact that the majority of MCS patients are women who are sick, exhausted, and broke and the majority of their caregivers are also women who are broke and exhausted too means that the system doesn’t care and doesn’t have to care. It has not had to face an angry movement of more energetic and affluent parent and family activists, such as those who have made major changes on health challenges ranging from acquired brain injury, developmental challenges, autism and HIV-AIDS over the last twenty years.

MAJOR OBSTACLE # 5: POPULAR ATTITUDES – FEAR AND DENIAL

In 1969, when I became a staff member at the then-brand new Pollution Probe, environmentalists had already begun to warn of global warming. By the early 1970s it was clear that the planet was going to heat up so fast that we were going to have catastrophic climate change. Yet I had bitter arguments with many of my friends, social justice comrades and family members about this certainty for decades thereafter because the mass media and government were discounting this prediction. A great many people were so afraid of it they preferred to disbelieve environmentalists who warned of it. When I joined the board of Greenpeace Canada in the mid-1990s, twenty-five years later, the Globe and Mail was in a concerted campaign to deny global warming –- yes, still. Because it was the most influential newspaper in Canada, it legitimized the head-in-the-sand approach, and this helped to delay the public’s understanding of global warming, and subsequent pressure on politicians and business by a decade or more, placing us far behind Europe and perilously increasing the consequences of climate change for North America. These days we regularly hear statements from radio and TV announcers that go something like, “Now that the planet is warming up faster than anyone predicted…” and of course I lose it and want throw things and hurt people.

Still, the larger point is that few of us really want to believe how bad things can be because it’s terrifying. We don’t know how we can cope with such problems, especially on our own. This goes in spades for MCS –- a horrible disease to have and, therefore, to contemplate. If our major institutions deny the existence of a given environmental disease, and refuse to support those with it, and if people with the disease and their families are too pulverized and impoverished by the daily struggle for existence to mount an effective fight and have no larger community to do it for them … well, then, too many people accept the official denial out of fear, until the proof is so far advanced in ever greater illness that we have a public health catastrophe on our hands. Arguably, if we take all environmental illnesses together, we already have such a catastrophe. This is why I wrote “A World Fit for Children”, to lay out strategies and programs to address this situation, one in which MCS is a particular challenge. But I think this dynamic is especially hard at work with MCS. It’s very difficult for people who don’t have it or know someone well who does to accept how bad it is and what it implies for our need, as individuals to change how we use chemicals in our lives and what chemicals we, as a society, will allow to be manufactured and released. But MCS won’t disappear if we close our eyes, on the contrary more of us will get it. Just as the WWF TV ads about global warming say, “Pretending climate change doesn’t exist won’t make it go away.” Ditto with MCS.

A SYNERGY OF RESISTANCE

The synergy of all these obstacles has created a grim situation for MCS sufferers, for their families and for our society as a whole. For while MCS is not new and there have always been a few people with the disease, the number of sufferers continues to grow and it has reached alarming proportions. Statistics Canada’s estimate that 2 1/2 to 3 per cent of Canadians have been diagnosed with this condition suggests that true figures for the number of actual sufferers are considerably greater and more in line with the figures produced by research in the US, particularly by a study from five US states which concluded that as much as 16% of the US population has the condition, if not to actual disability, then to the degree that they are unable to lead completely normal lives and must modify work and home to deal with their condition. 

We know that the rule of corporations is a rule of psychopathic institutions that blindly seek out very short-term economic interest at the cost of all and everyone else. We know that the term democracy is hollow when politicians captive to the corporocracy destroy the public capacity to control blind profit-seeking. And we know that in advanced technological societies, without control over how technologies are deployed, there is no meaningful democracy. Well, extend these understandings to health. Environmental degradation has enormous consequences at every level for our health. Yet the established economic, medical-pharmaceutical and political powers largely stand in the way of our taking control and healing the planet and ourselves – not only the evil-doing George W. Bush and Stephen Harper, but before them Liberal Prime Minister Jean Chretien worked diligently and effectively to undo a whole system of agencies and regulations on pollution.

We can overcome these obstacles, every single one. What it takes is awareness of the connections between chemical pollution and health, and participation as citizens in reclaiming and reshaping our economies and our health care systems in a new movement for good medicine for the 21^st century. PLEASE HELP – not just for those who are ill already, but also for all those who are threatened, now and in the future. We can do it. Want to know how? For MCS, go on to the next section. And for chemical pollution of all kinds and its health impacts, check out my Links page, and read my article, “A World Fit for Children”, on this site.