– MCS 101.4: A Little History
MCS 101 – Part 4
Some History
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When my mother came down with the acute form of this illness in 1982, there was already a branch of medicine known as Clinical Ecology in existence. A brilliant clinician in Chicago, Randolph Theron, M.D pioneered it. A small number of courageous and independent-minded physicians who either got MCS (for example, Dr. William Rae, Dr. Sherry Rogers, Dr. Jaqueline Krohn, Dr. Jerry Ross) or had patients (Dr. Doris Rapp) or family members with the disease and were looking for ways to treat them became adherents of this branch of medicine as it developed through the ’50s, ‘60s,’ 70s and ‘80s. In 1982, when my mother’s health collapsed completely, there were a number of prominent practitioners of this approach in the US, a few in Europe and just a couple in central Canada.
In 1974 Dr. William Rea, a cardiac surgeon and medical professor in Dallas, found himself blacking out from anaesthetics and solvents in the operating room. His investigation into the causes of his illness and further elaboration of Randolph’s methods led him to found the Environmental Health Center, Dallas (http://www.ehcd.com/). Let me quote Dr. Rea’s words to the introduction of his book on healthy building techniques and materials to provide a little more background to the history of the illness:
Through the ages, many creative people were partially stifled by pollutant over exposure. Their adverse reactions often were misinterpreted as psychological when, in fact, their problems might have been due to excess pollutant exposure. Charles Darwin was ill most of his life and often complained of pollutant and food exposures that made him ill. The artist Vincent van Gogh cut off his ear in a psychotic rage that might well have been due to his sensitivity to excess paint fumes. Even Hitler had a great aversion to odors of various pollutants. This overload might explain some of his psychotic behavior. Howard Hughes became a noncreative recluse with his disease affecting him until he became incapacitated. At times, Thomas Edison could tolerate only milk and no other foods. On a more positive note, Billy Casper, the golf champion, and Carol Channing, the famous movie star, were affected by foods and environmental pollutants, overcoming them to be very productive and creative people. President Teddy Roosevelt overcame pollutant-triggered asthma induced in cities by going to areas of fresh air. We all have benefited from his creation of famous national parks.
To this list we can add Marcel Proust, who could live only in a cork-lined room, who considered many odours to be fatal and disowned many friends and acquaintances if they could not come fragrance-free to his home. Women thought to have “the vapours” in the 19th century, who would sicken and faint at unknown causes, are now hypothesized to have been chemically sensitive. All this is to say that what we now call MCS, an illness once dubbed Twentieth Century disease, is not so, per se.
However, the incidence of MCS has multiplied exponentially since the arrival of the industrial/chemical age in mid-20th century because of the crucial role that large quantities of toxic chemicals – now ambient in air, water and soil, at work and at home – play when encountered by people who do not have the capacity to detoxify themselves.
I will return to the crucial role of man-made chemicals and MCS in numerous places as I go along.
Suffice to say, for the purposes of this very brief history, that the number of people afflicted with MCS has mushroomed along with the roughly 100,000 man-made chemicals and pharmaceuticals that have been put into circulation since the 1950s. Thus a population of sufferers that has included physicians, nurses, and scientists, well as people from all other walks of life, has prompted more in-depth study of MCS and new directions for treatment over these decades.
The Dallas Environmental Health Center is the premier site of treatment in North America, pioneering environmental medicine and training other health professionals. Four clinics modeled on this one have been built in association of medical schools in Japan, and an illustrious list of graduate physicians now practice around the world. As well, in the last two decades especially, a growing network of physicians and allied health professionals in the US (and a smaller number in Canada) has added its insights to our understanding of the causes and treatment of MCS, and some of these people’s names – for example, Dr. Grace Ziem http://www.chemicalinjury.net/, Dr. Robert Liberman, Martin Pall, Ph.D. – have become very well-known for their contributions. As new information has been accumulated and new diagnostic and treatment procedures have been introduced into medicine, many have been incorporated into the clinical practice of environmental medicine. A palette of treatments is necessary first because MCS manifests in multi-organ system illnesses, and second because patients differ to both in what kind of toxic injury caused their MCS, and in what forms of therapy work best for them. As posters at the Dallas clinic proclaim, “Biochemical individuality, individual reactivity.” At t he same time, its clear from a wealth of clinical experience that certain common denominators are involved both in causation and treatment.
At the same time, the MCS-focused network has overlapped and collaborated with a variety of other researchers and clinicians working on other environmentally connected diseases. Everyone in this multi-centered endeavour has been trying to understand better the phenomenon of toxic injury – what forms it takes, specific methods for its treatment, the demands and limits it imposes on individuals and health professionals, and necessary public policy responses in health system, public health and social services response.
Tragically, to date, as research science and medicine place ever more emphasis on the environmental causes of disease, with increasingly untenable justifications the wider Canadian provincial health care and social service systems have been grossly negligent in not responding to the growth of a population of sick people disabled by MCS. Well-established and effective treatment has been denied to hundreds of thousands of people. With the partial and important exception of Nova Scotia, to this day, these systems continue largely to turn a blind eye and an empty hand to this population, despite the fact that some of the most important new research studies on MCS has been done by a stellar group of Canadian researchers associated with the Environmental Health Unit at Toronto’s Sunnybrook-Women’s College Hospital. (Gail Mckeown-Eyssen, Department of Public Health Sciences, and Department of Nutritional Sciences, University of Toronto, Cornelia Baines, Nicole Railey, Vartouhi Jazmaji, Department of Public Health Sciences, University of Toronto, David E.C. Cole, Department of Laboratory Medicine and Pathology, University of Toronto, Department of Medicine, University of Toronto, Department of Pediatrics (Genetics), University of Toronto, Rachel F. Tyndale, Centre for Addiction and Mental Health, Toronto, Department of Pharmacology, University of Toronto, Canada, Lynn Marshall, Environmental Health Clinic Unit, Women’s College Hospital Toronto, Canada, Ambulatory care Center, Sunnybrook and Women’s College Health Sciences Centre, Toronto, Canada – see appended research, below, and attached article).
Though limited, Nova Scotia has the best provincial record of institutional response. Initially, this was due to the work of a crusading doctor, Jerry Ross, who developed MCS, was treated and studied at Dallas and eventually worked there too, but came home to fight for a similar facility in Nova Scotia in the 1980s. The Nova Scotia College of Physicians and Surgeons and his government consistently turned him down. But a dramatic large-group toxic injury took place in the mid-1990s at Camp Hill Hospital – of which more presently — and this finally forced a response from the province. No province yet insures a comprehensive array of the most important tests and treatments for MCS. But Quebec’s health care system, at the other end of the spectrum for Nova Scotia, has remained truly stuck in the dark ages. It’s government has agreed to flaunt all the relevant science by classifying MCS as a psychiatric disease with psychological causes. (It’s a rather cruel irony, related to the long-term isolation and backward-looking leadership of its College of Physicians and Surgeons, because on the environmental front per se, Quebec is, by contrast, ahead of many provinces in its legislation, regulation and innovation.) As one Quebec physician who recently developed acute MCS remarked to a friend of mine, “I thought it was a psychiatric condition until I got it.”
My neighbour directly below me in the Regina Caeli condominium building for MCS people in Dallas was an ER physician, my neighbour directly above was a nationally certified yoga instructor and registered nurse who ran a women’s health program at a regional hospital in Arkansas. I met physicians with MCS at the center who were from Italy, Spain, Germany and Brazil, and were seeking treatment and training, just in the short time I was here. Many of the best-known MCS physicians have the disease and became experts as part of their journey to help themselves and then help others. And every one of them knows this is a disease of toxic injury, of bodies overwhelmed by huge toxic loads, of minds bent, when they are affected, by toxins on the one hand and the crushing challenges of staying alive on the other.
Thankfully, the scientific research gathered and the policy recommendations developed by the federal Canadian Human Rights Commission in their excellent documents have pulled this country, at least theoretically, to a place from which it may be possible to begin to prod the provincial systems actually responsible for service delivery to respond appropriately. Many initiatives to bring about change in medical, social and housing services are underway, and a report on these will be posted in a few weeks on this blog.
As well, as Christiane Tourtet’s writing makes clear when she lists all the states that have sponsored MCS awareness events, knowledge is spreading in the US. We know it is spreading elsewhere too. However, as a recent spate of studies in Germany challenging recent genomic findings and the ongoing attack by some physicians and insurance companies on Dr. Rae and the EHCD make clear, the battle for recognition of this illness, for its diagnosis and for its treatment is by no means won, and will be hard fought. I explore the reasons for the violent resistance that MCS and its treatment have experienced in Part 6 – System Failure.
