THE CHEMICAL EDGE

MCS 101 – Part 2

Definitions and Links

MCS – NEITHER ‘MYSTERIOUS’ NOR ‘COMPLICATED’ – EXCEPT POLITICALLY

To kick this off, and as a sort of “executive summary” of a number of issues I’ll be elaborating on in more detail in the following sections, below, I’m going to draw on parts of one of (http://www.mcs-america.org/) MCS America’s cross-referenced documents, a brochure by MCS expert Christiane Tourtet, (another of whose articles on new research in genetics and biochemistry is appended at the end of my text) to offer a brief definition of MCS. The full text of these excerpts can be found at Tourtet’s personal site: http://www.nettally.com/prusty/mcs.htm. In defining MCS, Tourtet writes:

Multiple Chemical Sensitivity (MCS) also known as Toxic Chemical Injury is a very painful, debilitating chronic medical condition characterized by extreme sensitivity to chemicals. Reactions may be immediate or delayed and can be life-threatening. People with Multiple Chemical Sensitivity /Toxic Chemical Injury are made extremely ill by the slightest exposure to chemicals found in everyday life, such as, but not limited to pesticides, insecticides, fumigants, fertilizers, household cleaning products, air fresheners, deodorizers, glue, self – adhesives, carpets, new building materials, paint, ink, emission from photocopies machines, inkless pads, carbonless paper, automobiles exhausts, gasoline, fumes from barbecue grill, wood burning, perfumes, scented products, carbon paper, shampoos, hair products, beauty products, incense, dry cleaning and virtually everything else in the environment.

In a world where such chemicals are virtually everywhere, people with full-blown MCS are like aliens on their own planet – they can’t breathe the air in most places without getting very sick and so are driven to withdraw into the few safe places they can find. This is why MCS is known as an “invisible disability”. And let’s be clear: we’re not talking about an ordinary allergic reaction, one that flares up with exposure and then disappears, leaving the sufferer unharmed. MCS is a different kind of sensitivity. Christiane Tourtet:

People with MCS become extremely ill, and experience a wide range of invisible, debilitating hypersensitivity reactions, even life threatening, upon the slightest chemical exposure via inhalation, skin absorption, and ingestion. Symptoms may include, but are not limited to, severe breathing and neurological problems, muscle and joint pain, trouble thinking, concentrating, short term memory loss, confusion, visual changes, disorientation, dysfunction of the senses, loss of smell, or acute sense of smell, sinus congestion, burning eyes and throat, nausea, digestive problems, difficulty swallowing, extreme fatigue, numbness, tingling sensations, convulsions, heart palpitations, irregular heart beat, mood and behavioral changes, headaches of varying severity, and rhinitis. MCS people usually have severe food intolerances and hypersensitivities to molds, pollen, algae, insect bites, and medications, which can be life-threatening. Regardless of which form, the symptoms of MCS manifest themselves, the key word is SEVERE REACTIVITY to chemicals in the environment.

A BLANKET OF SILENCE, A SMOKE-SCREEN OF MISINFORMATION

If you’re wondering why you haven’t heard more about this illness, or why, if you’ve heard about it, you don’t understand it better, it’s because there is a de facto conspiracy of silence about it in key and influential quarters. For a multitude of reasons I explore in detail in MCS 101 – Part 6: System Failure. While there are whole networks of dedicated physicians, advocates, writers and patients, still the powerful interests who want to deny the prevalence, nature and severity of MCS have continued to shape the systemic responses of health care systems. So, despite its exponential increase, along with other environmentally linked diseases, so far the synergy of resistance I describe in System Failure has kept the lid on.

How can that happen? For the purposes of this brief introduction, to understand the kind of resistance we are speaking of here, its helpful to recall how the harms of tobacco were denied for so long even though they were known to the tobacco companies and to anti-smoking activists. Equally, recall how global warming was denied for thirty years before the evidence and the harms could no longer be pretended away – and also how this denial made the problem so much worse.

We are dealing with exactly this sort of denial with respect to the extreme harms to health of pesticides and other persistent organic pollutants – even as these harms are being documented, even as some have been known since Rachel Carson wrote Silent Spring, we are still the targets of chemical corporations’ lies and propaganda that disempower us and hide the victims of mass chemical crimes. Consider that the deniers of MCS constitute even more powerful corporate interests than tobacco –petrochemical, pharmaceutical, medical, military and finance, an incredibly powerful line-up– and keep this in mind at all times when evaluating the history, the evidence, the science and the politics involved in the debates about this illness. Who do you trust to tell you the truth?

Denial comes in many forms, some blatant, but many subtle and insidious and woven into discounting language. You may have encountered, for example, the labeling of MCS as “mysterious” and “complicated.” These are code words with a negative subtext. “Mysterious” is meant to convey “not a real disease with a real cause” and “we’re too polite to say that there’s no effective treatment for what’s really a psychological problem anyway.” And “complicated” means “MCS is expensive to treat, involves the use of non-pharmaceutical health procedures which we’re not willing to pay for with insurance money, demands too much time from doctors who only spend 5 to 15 minutes with patients and don’t have, or want to make the effort to obtain, the cross-specialization expertise to effectively treat it and we don’t want to know anything about it. ”

The good news is that there are also people – a growing river of physician clinicians, scientists, human rights advocates, patient activists, union health and safety experts – who, armed with the evidence of new scientific diagnostic methods, are making progress in developing awareness, and a program of medical, social and environmental measures for which we can all fight, if we know about them.

So let’s begin this blog’s contribution to spreading the word by blowing away the veil of willful mystification that’s been woven around MCS by its deniers, and assert what science and clinical practice have proven unequivocally: MCS is a physiological disease caused by toxic injury, sometimes one injury, sometimes many, sometimes in one major exposure, sometimes over a long period of time. MCS ensues in people whose bodies are unable to detoxify the injurious chemicals due to an insufficiency of enzymes and toxin-conjugation abilities. Because it affects the nervous, immune and endocrinological systems, MCS also affects other multiple organ systems – chemical toxins don’t just stay in one place, and master systems affect other systems. So it MCS is almost always multi-faceted in its presentation. We are not all the same, and we’re not all exposed to the same levels of environmental poisons, and some of us get more poisons and have fewer capacities to rid ourselves of them than others, and some of us catch our illness early others not, and some of us have more chronic co-infections than others – these are variations on a theme. But the theme itself – toxic injury, inability to detoxify, damaged nervous, immune and endocrinological systems — simple.

SICK, BANKRUPT, DISPOSESSED AND HOMELESS

There are innumerable consequence and challenges to MCSers arising out of their illness, many of which I and others will address in different places on this site, and these are far from simple. But perhaps the very greatest of them is that MCS people need to live in homes that do not add more toxins to an already intolerable body burden of chemical crap. We need safe housing where our broken and toxic systems can rest and recover.

Some studies show that when many MCS people have such safe homes and can spend over 50 per cent of their hours in a safe environment, they begin to recover, even absent a great deal of treatment – that is to say, the safe home is the most important component of treatment. But as it turns out, finding a safe home is the single most difficult challenge facing MCS people as a group. Thanks to the toxicity of modern building materials and/or the ubiquity of pesticides and mold (which gives off chemical mycotoxins) the vast majority of housing stock simply isn’t safe for people with full-blown MCS. And thanks to the drastic pauperization of MCSers, whose health costs skyrocket at the same time as their earning capacity disintegrates, building a safe home is out of the question for the majority. Since there is virtually no publicly subsidized housing for MCS people, today there is large but mostly invisible group of dispossessed environmental refugees, living in trailers and cars and tents in remote locations; while others who cannot sustain this life (it’s hard, but in Canada, the cold makes it impossible for most), tread water or deteriorate into acute illness and early death in unsafe conditions in ordinary houses and apartments.

GENES, TOXINS AND MULTIPLE ILLNESSES

So what’s the genetic difference between these environmental refugees and other people who are healthy or have environmentally-linked illnesses as a result of similar exposures? In recent years, genomic studies have shown that people who have MCS have “polymorphisms” or variations of the genes that code for the biomaterials our bodies need to eliminate the many the modern, man-made chemicals and pharmaceuticals present in our air, our food, our buildings, our cleaning and grooming products and our pharmaceuticals. We are speaking here of variations on the Cytochrome P450 enzyme system (involved in Phase I detoxification) and the water—conjugation system (Phase II detoxification) – which are essential to our bodies’ ability to dump the chemical poisons of modern civilization. Some of us are born with these genetic variations, others have such severe exposures that their DNA is damaged – or lots of people with severe MCS have both.

Whatever the cause of these polymorphisms, instead of dumping these chemicals so they don’t poison us, MCS people become a sponge for them. Then the chemicals damage the neurological, immunological and endocrinological systems and, due to their chemical resemblance to certain kinds of natural molecules, latch on to receptor sites on organ, or are sequestered in tissue and bone in order to minimize the harms they would do were they to continue circulating in the bloodstream. Is it any surprise that these phenomena result in severe dysfunction o fall affected parts?

The “multi organ system illnesses” which MCSers manifest can, and where the disease is both severe and chronic, do, affect virtually every part of our bodies — but all from toxic injury and overload. So a person could have, for example, a combination of illnesses something like the following:

Toxic encephalopathy, toxic effect of pesticides, immune deregulation, hypogammaglobulenemia, allergic rhinitis, allergic gastroenteritis, autonomic nervous system dysfunction, chemical sensitivity, chronic fatigue, fibromyalgia, pancreatitis, early type ii diabetes and vasculitis.

That’s a hell of a collection of illnesses, enough to make a hard man weep. I know it well, because I’ve quoted it verbatim from my diagnosis by Dr. William Rea at the Environmental Health Center, Dallas. But this cluster of miseries is by no means atypical, especially in a person who has had chronic and untreated MCS. It’s a long list and creates a lot of suffering for the person who has it, even aside from the extremely painful effects of MCS as such. And given the huge load of pesticides I’ve just learned I’m carrying, I have to detox soon or face cancer too.

What’s crucial and striking about the list – a crucial point that can’t be overemphasized — is that none of these discrete illnesses or conditions can be treated or significantly ameliorated in the same way that they would be tackled in non-MCSers. In our case, they won’t get better unless the cause – the body burden of toxicity, be it pesticides and heavy metals (my legacy) or mycotoxins or petrochemical residues or solvents, whatever – is also directly addressed through detoxification. Achieving detoxification involves a great effort and often takes many years, since the body has to be coaxed, prodded and supported through the endeavour – it’s another one of those cosmic jokes that if you can’t detoxify naturally, chemical poisons are potentially more harmful going out than they were coming in.

So for people who are seriously ill with MCS and have been so for many years, detoxification needs to be accompanied by immunological, neurological, endocrinological, and nutritional supports, plus pharmaceutical assistance to help with many chronic infections, to compensate for damaged capacities until normal function can be restored. If detox and such supports are available, most people can make huge progress. But if they are not available – and of course these supports come with a hefty price tag that most people who have the illness aren’t able to afford – well, for most it’s impossible to climb back to health and a worthwhile quality of life. So a great many people stay sick and isolated and then they die – almost all of them so hidden away that nobody knows except their MCS friends.

The consequences of ignoring this disease in public policy, health care and social services are very serious, and not just for MCSers. Because of the politics of the illness (MCS 101 – Part 6) within our health care system and their consequences for media coverage, public understanding and awareness of this increasingly widespread disease and its broader social consequences are scant to non-existent. Relative to the rate at which it’s spreading, we are falling farther and farther behind in dealing with this devastating environmental illness, as well as with many others.

So here, in seven parts, is my offering of an in-depth introduction to help you understand just what is going on – in my body, in the bodies of my fellow sufferers, in the lives of our families, in the health care system and in the offices of physicians and politicians who act, knowingly or otherwise, to defend the economic interests of giant chemical and pharmaceutical industries as well as private insurance companies and military apparatuses seeking to obscure what’s already happened to some of us and threatens to affect all of us, and soon.

AN EPIDEMIC OF ENVIRONMENTAL ILLNESS – MCS AND MANY OTHERS

MCS is one disease among a growing number of grave illnesses and deficiency-conditions that have resulted from the roughly 100,000 or so new chemicals humans have introduced into the environment since the dawning of the chemical age. Autism, for example, linked to mercury and other pollutants, used to occur once in every 10,000 births; in some North American communities it now occurs in 1 out of 100. Neurological problems related to attention deficits, lack of mental acuity and an array of behavioral problems that challenge children in school and have a life-long effect on adults have been caused or grossly exacerbated by persistent chemical pollutants. Equally, some pollutants are implicated in alarming drops in male sperm count and precocious puberty among girls, and resultant reproductive disorders. These are only a few of the problems that we have learned in the last 15 to 20 years to attribute to chemical pollution. Before that, some researchers already knew that cancers and crippling auto-immune diseases, as well as a host of more ‘conventional’ illnesses were associated with many of these persistent organic pollutants (POPs). MCS as such is one of the widespread disease forms in this array of environmental illnesses.

By writing about MCS, as I have done in writing about the other environmentally-linked diseases and disorders (check out “Toxic World, Troubled Minds”, “Techno-Environmental Assaults on Childhood” and “A World Fit for Children” on this blog or order the anthologies in which they were included), I hope to underline that as a society we must face the health impacts of our chemical world and start dealing with them before the crisis in public health becomes so acute we can no longer address with it. In many places, that crisis is already apocalyptic in proportion. According to epidemiologist Devra Davis, for example, in some Chinese villages cancer rates are at 80 per cent – a catastrophe of devastating proportions. Closer to home, on the First Nations reserve near Sarnia’s Chemical Valley, the ratio of girls to boys is more than 2 to 1, reflecting, if more extremely, a trend across this country and elsewhere linked to the estrogen-mimicking nature of many organic pollutants that has been plotted since the late 1970s.

So my very first references are general ones geared to set the context for the subject of toxic injury, for MCS is one of the diseases that results from it. The germinal text and clarion call about the dangers of toxic chemicals is the now famous book OUR STOLEN FUTURE: Are We Threatening Our Fertility, Health and Survival? A Medical Detective Story, by Theo Colborn, Diane Dumanowski and John Peterson Myers, first published in 1996 with an introduction by then U.S. Vice President Al Gore. Much research was indeed undertaken or extended as a result of this book, and a lot of it has been reported in recent years. A great deal of this research bears indirectly or directly on the development of MCS as well as other forms of neurological, endocrinological and immunological damage by toxic substances.

I have written about some of that research myself, in several articles I am posting. One I co-authored with David Fenton, “Toxic World, Troubled Minds”, appeared in No Child Left Different, Sharna Olfman, editor, Praeger, 2005 is full of references, both in the body and in the footnotes, regarding the work of leading contemporary researchers in the field of toxic injury. This article deals with the terrible impact of toxic pollution on neurology and mental capacity in children – and, by extension, on the adults they become. Another article, “A World Fit for Children” in Child Honoring, Raffi Cavoukian and Sharna Olfman, editors; preface by the Dalai Lama, Praeger, 2006, attempts to set out a broad public health and health care system reform agenda to address environmental assaults, and broadens out to urge the adoption of a larger ‘green deal’ strategy to green the economy and get rid of the toxic chemicals that are causing damage that threatens, in those famous words, “our fertility, health and survival”.

But of course, I am also writing on a personal note. As I have experienced life-changing and indeed life-threatening health and ability challenges due to MCS, many friends and family members have asked me to explain this condition and what is involved in dealing with it. This text is a long overdue response to that request. As well, due to ignorance of the disease, my ill-health frequently been inadvertently exacerbated when people have exposed me to chemicals, usually in cleaning and grooming products, that made me sick. And on more than one occasion I have heard ill-educated and hurtful comments, again inadvertent I am sure, that more information would certainly obviate. These personal needs also motivate me to communicate about MCS.

So for all these reasons, I want to help to explain MCS, calling on the work of others, and to include some of the exciting new information about its causes and treatment that has emerged in the last few years. I am neither a physician nor a research scientist – I’m an environmental writer with MCS having a go at getting this information across. So I may not have got all the science perfectly, and doubtless I’ve not been able to include every relevant point. However, my mother had the acute form of this illness, and I have had the illness for a long time, in the “sick but mostly functional” form for decades, and in the acute form for eight years. In those years, I have had to learn in the hardest way what this condition really is and what helps and hurts it. I have just finished a four and a half month stint as a patient at the Environmental Health Center in Dallas – more on this remarkable clinic as I go along, and I hope over the coming months to share more of what I’ve learned during that time. In the meantime, though, to make a start, I hope that the explanations I’ve written here, and the resources I’ve gathered, may be more helpful than simply referring people to expert, but sometimes less accessible sources.

In addition to my text and the other materials I am posting about MCS here, I have compiled some helpful references and links which I’ve interspersed throughout what follows, and which I’m including in the MCS Links section to make it easy for people to access a more comprehensive account of the causes, nature and treatment of MCS, as well as to understand the array of issues regarding social accommodation and discrimination. And I’m also posting a few short articles by other people that summarize some of the important new research with respect to genetics and toxic injury so you can read some of this material for yourself. As time goes by I’ll be adding and subtracting to these pieces as new ones come along.

______________________________________________________________________

MCS RECOGNITION AND SOME GREAT LINKS

If you don’t know much about MCS, you are not alone. But, as Tourtet writes,

Multiple Chemical sensitivity (MCS) is recognized by many Federal Governmental Agencies, including the Social Security Administration, Department of Housing and Urban Development (HUD), Environmental Protection Agency, and Americans with Disabilities Act, the US Access-Board, an independent Federal Agency devoted to accessibility for persons with Disabilities and numerous Governmental Agencies and Commissions. It is important to note that the US Access-Board has adopted a Fragrance-free environment for persons disabled by MCS, and has issued extensive Guidelines of Accommodations for persons disabled by MCS and Electromagnetic Sensitivity (EMS).

http://www.access-board.gov/news/ieq.htm

http://ieq.nibs.org http://www.access-

board.gov/about/policies/fragrance.htm

and

The Governors of 35 States have Proclaimed Multiple Chemical Sensitivity/Toxic Chemical Injury Awareness. Notably, Multiple Chemical Sensitivity (MCS) Awareness has been proclaimed for 7 years in a row, in the State of Florida by Governor Jeb Bush. Other States where Multiple Chemical Sensitivity (MCS) /Toxic Chemical Injury have been proclaimed are: Alabama, Arizona, Colorado, The Commonwealth of Massachusetts, Connecticut, Georgia, Hawaii, Idaho, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Maine, Michigan, Maryland, Missouri, Minnesota, Mississippi, Montana, Nebraska, Nevada, New Jersey, New Hampshire, New Mexico, New York, North Carolina, Ohio, Oregon, Pennsylvania, West Virginia, Wisconsin, Washington. The respective Mayors of the City of Bradenton (FL) and of the District of Columbia have proclaimed MCS Awareness, and remarkably, the respective Mayors of Broward County (FL) have proclaimed MCS Awareness for 8 years in a row.

As you can see, in the U.S., whose health care Canadians love to hate, the recognition of MCS by public authorities in many states and federally, while still a far cry from what is necessary, is leagues ahead by comparison with the Canadian situation. The Scandinavian countries and Japan in particular recognized the illness long ago and are far ahead of us in all respects. We have tremendous catch-up to do and we need to do it fast. Statistics Canada reported in 2006 that a whopping 3 per cent of Canadians have been diagnosed with the disease – and that’s within a system where most physicians wouldn’t know MCS if it hit them over the head with a baseball bat and shouted “toxic injury!” So the real incidence of it is much greater.

In addition to the desperate need for broad-based construction of safe housing, the provision of emergency shelters and of safe hospital facilities – fundamental services without which people with MCS cannot survive or even hope to make modest recoveries — MCS sufferers, their health providers and advocacy groups are fighting for the kind of rights accorded others with acknowledged disabilities. Tourtet again:

Employers, schools, offices, hotels, stores, Doctors and Dentists, Hospitals/ Health Care Facilities, and other public places and transportations, must make their premises accessible and provide reasonable accommodations as required by Law, the Americans with Disabilities Act (ADA) for people disabled by MCS. The accommodations should be tailored to the specific needs of a person disabled by MCS and worked out satisfactorily between that person and the establishment. Due to the nature of the disability, fast service should be granted for persons disabled with MCS, to avoid potentially life-threatening reactions. It is not uncommon for an establishment not accessible for persons disabled by MCS to modify its policy and provide services at the home of the disabled person.

The basis for a major leap forward in this country on all these fronts – and we are woefully far behind — was finally laid in 2007, when the Canadian Human Rights Commission proclaimed “Environmental Hypersensitivity” (=MCS) an official disability. At least Nova Scotia and Ontario have also recognized it as such. Now, with the work of dedicated organizations and individuals beginning to make headway, and with the CHRC declaration, perhaps we can begin to take more significant strides in this country. For make no mistake: Dr. David Suzuki is right. MCS is real, it is just the tip of the iceberg, and our illness signals dangers for all humanity.

For a wealth of information from a Canadian perspective beyond what I’ve been able to write, attach or append below, check out:

http://ehaontario.ca/- the website of the Environmental Health Association of Ontario — the remarkable and vibrant advocacy group for people with MCS in Central Canada and its dynamic sister organizations, the Environmental Health Association of Quebec, http://www.aeha-quebec.ca/, and the Environmental Health Association of BC, http://www.ehabc.org/, as well as their affiliate, the Environmental Health Association of Nova Scotia, http://www.environmentalhealth.ca/ . These sites are full of important and helpful research, news, advocacy materials, references and so much more — lots of information that I can’t provide here. For more Canadian links, including AEHA-Nova Scotia, New Brunswick and environmental children’s health and other environmental health groups, go to http://www.geocities.com/rainforest/6847/aeha.html.

To see the excellent synthesis and summary of research on MCS compiled by the Canadian Human Rights Commission, go to their website for two documents:

(a) The Medical Perspective on Environmental Hypersensitivity:

http://www.chrc-ccdp.ca/research_program_recherche/esensitivities_hypersensibilitee/toc_tdm-en.asp

b) the beginnings of policy regarding accommodation and legal issues with respect to the disability – a good twenty years later than many European countries and many US states, but better late than never:

http://www.chrc-ccdp.ca/research_program_recherche/esensitivities_legal_hypersensibilitee/toc_tdm-en.asp

For an excellent American resource, where you can read many research papers and summaries of research directly and get a sense of the many things happening in the USA — from good news to scary reports on the attempts of insurance companies to exclude environmental medicine and persecute its practitioners – and to find more personal writing about and from people with MCS, visit MCS America, a rich and informative website where you can explore many different topics, references and news.

http://www.mcs-america.org/

As well, two more excellent resources:

http://www.geocities.com/aprilmae.geo/

The Multiple Chemical Sensitivities Primer or MCS For Beginners

(Click on “What is MCS?” for starters.)

http://www.herc.org/

Health & Environment Resource Center

(Great site for the health-environment connection – not just MCS, but allergies, migraines, asthma, joint pain, etc. Has references, links, message boards to connect to others, and more. Bookmark this one for your own health.)

I will be adding links as we go along, and hope soon to have a section on international links. To begin, here is a good spot for information on MCS in Spain:

http://mi-estrella-de-mar.blogspot.com/

I’ll end this section by noting that many people with MCS also have CFS/ME (Chronic Fatigue Syndrome and Myalgic Encephalomyelitis) and Fibromyalgia; and people with those illnesses are often chemically sensitive, though not to the same degree as those with MCS as a primary diagnosis. Many researchers are drawing links between these diseases – links we feel in our own bodies and that appear in research as similar biochemistry. For some definitions and a good list of links on CFS/ME, please see the TIRED AND HURT: CFS/ME AND FIBROMYALGIA page.