EXCERPTS FROM THE REPORT
FROM THE PREFACE
The year 2021 was, for the most part, a good year in multiple chemical sensitivity (MCS) studies. Several major research articles that we substantially draw on in this commentary were published. An extensive literature review from Alberta Health was released. In a field so terribly underfunded, these important additions were very welcome.
However, the INSPQ report, Syndrome de sensibilité chimique multiple, une approche intégrative pour identifier les mécanismes physiopathologiques, came to our attention in the fall of 2021, and although we looked forward to reading and learning from it, as soon as we began, the alarm bells went off. For we saw that it had taken an approach and arrived at conclusions highly divergent from the other new pieces, and that, it soon became clear, were both wrong and dangerous. The Association pour la santé environnemental du Québec - Environmental Health Association of Québec (ASEQ-EHAQ), similarly concerned about the INSPQ report’s conclusions, asked their Minister of Health and Social Services to remove the report from the institute’s website and update it. The ASEQ-EHAQ letter of appeal, which we support, is included as an Appendix to our commentary.
Our fears were deepened when, in early 2022, a member of our community, “Sophia” (a pseudonym) ended her unbearable MCS-induced pain and hardship with MAiD (medical assistance in dying). After years of desperately seeking a safe place to live where, on a limited budget, she could be free of the fumes of her neighbours' cleaning products and cigarette smoke, her suffering became unbearable and she chose to end her life. Some of us knew her and had worked directly with her, so her death was particularly difficult. Despite the advocacy of doctors and disability professionals, every level of government refused her help. Except for six units created long ago in Ottawa, no dedicated safe housing units have ever been built for people with MCS, finding an affordable safe residence is extremely difficult and there are no programs to assist people like her to find safer places anywhere. We have learned since that a number of others facing a similarly dire situation have also applied for MAiD.
Our fear is that if the conclusions about the nature and mechanisms of MCS in the INSPQ report attain acceptance by any government or medical association, they will have extremely deleterious consequences. Because these conclusions are wrong, authorities will treat Sophia’s physical suffering as a mental illness, deny appropriate medical care, leave disability needs unmet and thereby doom many more people to the same fate. Out of this profound concern, we decided that the erroneous and dangerous conclusions of the INSPQ report had to be disputed and refuted substantively and piece by piece. Thus, this critique and counterargument was born.
Though we find the INSPQ report’s conclusions frightening, we used the opportunity that its critique presents to showcase some of the exciting work and top-tier researchers in MCS studies, environmental studies and myalgic encephalomyelitis (ME) studies, not included in the INSPQ report. This is work that policy makers, health providers, those working in the disability field, and many others really need to know about. It will help to explain what MCS really is, and, to a certain extent, also ME (myalgic encephalomyelitis/chronic fatigue syndrome). This knowledge is critical in assisting these groups to understand and to help modernize health care in general to address complex, environmentally-linked diseases and to develop healthier public policy on chemical use – a modernization that is very badly overdue.
The patient perspective is essential for any illness, and its incorporation has become common practice. It is l needed in any process that seeks to identify any or all of the nature, mechanisms and definitions of MCS, and it is also essential to the creation of clinical programs and sites, disability needs, population health and prevention strategies and research priorities. But it is entirely missing from the INSPQ report. It is a perspective we have used to frame our critique, and included it very explicitly at key junctures within it.
We are an Ontario-based group of advocates who have worked together for the recognition and inclusion of the medical conditions ES/MCS, ME and FM, with which about one million Ontarians live and struggle. These are often devastating and disabling conditions, but have little to zero care and support from our provincial health and social services systems, with ES/MCS the most excluded of the conditions. Our group includes environmental health consultants and educators, writers, health and social policy planners, participants in national research efforts (ME), senior health system administrators, health system change experts, human and disability rights advocates, educators, patient organization leaders, a lawyer and caregivers. Some of us live with one or more of the conditions, some of us do not. More details about us can be found in Appendix 1, “Information about the Signatories” [Or click HERE].
A WORKING DESCRIPTION OF MCS
MCS is a multi-system, recurrent, environmental syndrome and disease process that flares in response to different exposures (i.e., pesticides, solvents, toxic metals, fragrances, cleaning products, cigarette smoke, certain foods, drugs/medicine, mold and other vehicles of exposure) at concentrations that do not provoke such symptoms in other people. It is characterized by neurological, immunological, cutaneous, allergic, gastrointestinal, rheumatological, cardiological and endocrinological signs and symptoms. MCS is a widespread condition and the majority of those who live with it (approximately 70 percent) are women, though a significant minority are men.
Onset, which may happen slowly over time or rapidly, begins on exposure to a particular chemical or mixture of chemicals (including bio and well as synthetic toxicants) that commonly affect the immune system and/or nervous system, such that MCS appears to be primarily a neuroimmune disease process. This chemical exposure interacts with one (or both) of these systems in a way that renders individuals intolerant to subsequent exposures, which are then experienced as triggering or flaring events. After the initial onset, some new triggering events may result in “crashes” - additional worsening to qualitatively greater degrees of severity that are not easily reversible without intervention.
Affected individuals no longer tolerate everyday exposures to a wide range of structurally diverse substances at levels that never bothered them previously, including ingestants, inhalants, implants, and skin contactants. Many previously tolerated foods and drugs may trigger symptoms. At times, onset is not observed or reported immediately, and the phenomenon of "masking" can obscure MCS and delay diagnosis.
MCS ranges in severity. Early, milder stages are often erroneously perceived to be allergies, require adjustments and avoidance, but go undiagnosed. Moderate to severe MCS involves greater intensity and duration of symptoms. Severe MCS brings intense reactions, great physical suffering and can be life-threatening for some people when exposed to some chemicals. Major efforts to avoid triggers are required, making life in the ambient air of chemically-laden everyday environments unsustainable. This is how MCS disables those affected. When co-morbidities are present – often the case – overall health is further compromised, and additional barriers are encountered.
MCS is usually responsive to appropriate measures and treatments, but becomes worse without these.