What you will find in this section:
“There are two ways to be fooled: One is to believe what isn’t so; the other is to refuse to believe what is so.” Søren Kierkegaard
- About chemical sensitivity when it becomes a disease
- About chemical sensitivity when it becomes a disease
- Research bibliographies
- Popular and informed reading on ES/MCS
- Some important newer research
- Serious, systems-approach proposals for treatment and support services under consideration
- Additional Medical and Scientific Sources
- (Just a few) ES/MCS Organizations
- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) – click here.
In the WHO’s ICD 10 (International Classification of Disease) you can find ES/MCS listed under a different name: effects of Toxic Injury ICD 10 T51-T65.
Though it affects millions of people, those who don’t have ES/MCS or have a family member with it may not know much about this particularly perverse affliction. Due to toxic exposures, sometimes combining with some other predisposing factor such as a poor genetic heritage for detoxification or a previous brain injury, people become like aliens, unable to breath the chemically-laden indoor and urban atmosphere of their own planet.
The condition can range from a hindrance to a disability to a hellish day-to-day condition, and is even life threatening in those with severe levels. And it can completely ruin your life, excluding people [note edit] from every type of human activity, including love and family relationships, from work and from play. And due to widespread, erroneous medical myth, those who have it are also stigmatized as hypochondriacs or “emotionally troubled” or malingerers who don’t want to carry their own weight, an additional injury that is extremely hard to bear. [pdf: Living with ES/MCS… have sent by email] Get to know about it quickly by visiting the Chemical Sensitivity Foundation and watching the video of Dr. Christine Oliver, Harvard University, and now also resident in Toronto.
The most important factor in the ongoing ignorance and disbelief of multiple chemical sensitivity has been the chemical industry’s influence (pdf: The Chemical Industry vs MCS ) in shaping medical, governmental and insurance policy making. If that seems a stretch, then think tobacco industry and cancer, multiply the stakes by some nearly infinite figure and you will understand the commensurate resistance. Because if everyone understood that millions of people get instantaneously sick from exposures to chemical “air fresheners” or car interiors, or laundry products or building materials or cosmetics – which is the very problem that pushes people with MCS to withdraw from society and avoid indoor air, and that, in turn, makes them literally invisible – they would understand too that those people are canaries in our chemical coal mine. And this would produce a huge crisis of confidence in the modern chemical regime. Therefore the illness has to be denied. Considering how widespread the illness has become, the denial has been remarkably successful.
This condition all kinds of people: it affects veterans (especially Gulf War 1, but also other wars in which chemicals were/are used), first responders, oil spill workers, workers making chemicals and workers working with chemicals, including plastics and agricultural workers – as well as many people who get sick outside of occupational settings in ‘sick buildings’ or other domestic settings. It happens that more women than men succumb to it overall, thanks to a number of biological and social factors; but when the exposures are intense or protracted, men succumb as well. However, the ‘majority women’ factor activates the well-documented sexist bias – disbelief, minimization, psychologization of illness – in medicine, which adds further to the problem of recognition.
You will often read, even in sympathetic articles, versions of the belief that “we don’t know much about MCS.” This is really misleading and untrue. (See the research bibliographies, just below.) At times, this idea may be motivated simply by ignorance of the extant research. But when it comes from the professional deniers with undeclared interest in obscuring the illness, it is motivated by a desire to hide what has been learned and is being learned every day. So, while we do not yet have what’s known as a “biological biomarker” – a diagnostic blood characteristic unique to MCS – we are getting there through the new science of metabolomics. And this is critical: all the new research of the past two decades – in extensive SPECT scan and fMRI brain imaging, in genetic testing and neurochemistry, in blood tests and biopsies of toxic body burden, in understanding the contribution of processes such as methylation and the role of chronic infections such as Lyme and brain injury – all this new research, in fact, points to physiopathology rather than psychopathology.
Remember: any one of us, any of our children and loved ones, could be blindsided by a toxic exposure – an oil or gas spill, a pesticide encounter, moving into a new home with too many volatile organic compounds (“VOCs”) for us to handle – and that could push any one of us over into disabling MCS. So every one of us has a stake in changing this chemical regime and ensuring that creating treatment and support are accessible and insured for everyone who needs them.
Have a look at the resources that are available to you…
Chemical Sensitivity: Pathophysiology or Pathopsychology? Stephen J. Genuis, MD, Faculty of Medicine, University of Alberta, Edmonton, Alberta, Canada. Clinical Therapeutics/Volume 35, Number 5, 2013 · Atopic Clinical Entities Update
Chemical Sensitivity Foundation – Research page http://chemicalsensitivityfoundation.org/chemical-sensitivity-research_bibliography.html
Chronic, Complex Conditions: Academic and Clinical Perspectives, John Molot, MD, FRCFP, 2013. The clinical appendix to the business case package, this document presented current thinking by physicians and researchers, and recommendations for clinical services. NOTE THE BIBLIOGRAPHY FOR RESEARCH ON ES/MCS. Download Academic and Clinical Perspectives
MCS America – Studies (research) page http://www.mcs-america.org/index_files/MCSScientificStudies.htm
Popular and informed reading on ES/MCS
Amputated Lives: Coping with Chemical Sensitivity. Alison Johnson. With a Foreword by L. Christine Oliver, M.D., Harvard Medical School.
…and many others you can find at The Chemical Sensitivity Foundation book page: http://chemicalsensitivityfoundation.org/chemical-sensitivity-books-dvds.html
12,000 Canaries Can’t Be Wrong: What’s Making Us Sick and What We Can Do About It. Hardcover – June 1, 2014, John Molot, M.D.
Recognition, inclusion and equity – The time is now: Perspectives of Ontarians living with ES/MCS, ME/CFS and FM, Varda Burstyn and MEAO for the OCEEH project, 2013. This report presents a major qualitative survey of patients’ experience, their needs, the (yawning) gaps in service in Ontario – typical across Canada – and provides paticular analysis of women’s, children’s, and stigmatization issues. It then presents an in-depth exploration of the model of care and its proposed delivery system, and an -depth discussion of issues in barrier removal across government and the public sector. Download Recognition, Inclusion, Equity: Patient Perspective, Complete
The Quantitative Data, Erika Halapy, Epidemiologist, with Margaret Parlor, Statistical Analyst and President, ME/FM National Action Network, 2013. A first-ever compilation and analysis of statistical findings in Canada and Ontario, based primarily on Statistics Canada findings. Download OCEEH_Quantitative Data Report
Some important newer research
Environmental Sensitivities: Chemical, Electrical, and Beyond in special issue of Ecopsychology http://online.liebertpub.com/toc/eco/9/2 . Guest editor Pamela Gibson Reed (http://www.psyc.jmu.edu/ug/people/gibson.html), who heads the MCS research team at James Madison University (http://www.mcsresearch.net/ and http://www.mcsresearch.net/whoweare.html).
“Functional brain MRI in patients complaining of electrohypersensitivity after long term exposure to electromagnetic fields. G. Heuser. Rev Environ Health. 2017 Sep 26;32(3):291-299. doi: 10.1515/reveh-2017-0014. https://www.ncbi.nlm.nih.gov/pubmed/28678737
Canadian study: Functional Impairment in Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivity M. Ruth Lavergne, MSc.; Donald C. Cole, MD, MSc., FRCPC; Kathleen Kerr, MD, Dip Env Health; Lynn Marshall, MD, FAAEM, FRSM. Canadian Family Physician, Feb. 2010. Download Functional Impairment_ EHC Study
“Multiple Chemical Sensitivity: Toxicological Questions and Mechanics” Martin L. Pall, Ph.D., General and Applied Toxicology, 3rd edition, 2009. Find at https://www.researchgate.net/publication/285783803_Multiple_chemical_sensitivity_Toxicological_questions_and_mechanisms
Stigma and sexist bias in medicine
“Multiple Chemical Sensitivities: Stigma and Social Experiences.” Juliene G. Lipson, Department of Community Health Systems School of Nursing University of California, San Francisco. Medical Anthropology Quarterly, Vol. 18, Issue 2, pp. 200–213, ISSN 0745-5194, online ISSN 1548-1387. C! 2004
‘The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain.’ Diane E. Hoffman and Anita J. Tarzian. Journal of Law, Medicine and Ethics (29) 2001: 13-27.
Chronic Pain in Women: Neglect, Dismissal and Discrimination, 2010, Mary Lou Ballweg & Carol Drury, The Endometriosis Association. Terrie Cowley The TMJ Association. K. Kim McCleary CFIDS Association of America. Christin Veasley National Vulvodynia Association. www.endwomenspain.org
Commercial Versus Health Interests
Commercial versus Health Interests: The Chemical Industry’s Organized Denial of Toxic Injury and Multiple Chemical Sensitivity (“Environmental Illness”) – A Portrait of Disinformation – Two Historical Documents. Ann McCampbell, M.D. 2001 and the American Chemistry Council 1990. Compiled by Varda Burstyn. Downloadable pdf.
(Just a few) ES/MCS Organizations
The Chemical Sensitivity Foundation: http://chemicalsensitivityfoundation.org/
MCS America: http://www.mcs-america.org/index_files/MCS.htm
Scientific and Medical references on MCS America
American Academy of Environmental Medicine
Canadian Lyme Foundation. Lyme disease can create severe chemical sensitivity, among many other problems.
Environmental Health Centre, Dallas. Longest serving, full roster of diagnostic and treatment services. http://www.ehcd.com/ – this website is very educational and merits a visit.
Dr. Wm. J. Rea, Founder and Director, EHCD
Arizona Centre for Advanced Medicine. Another clinic with multiple diagnostic and treatment modalities. http://arizonaadvancedmedicine.com/
Environmental Health Clinic, Women’s College Hospital. Diagnosis only, limited testing. http://www.womenscollegehospital.ca/programs-and-services/environmental-health-clinic/
Integrated Chronic Care Services (formerly, Nova Scotia Environmental Health Centre). Limited range of diagnostic and treatment options, only government-supported treatment center in Canada, so a step in the right direction. http://www.cdha.nshealth.ca/integrated-chronic-care-service-iccs
Chemical Sensitivity https://www.diseasemaps.org/multiple-chemical-sensitivity/
Serious, systems-approach proposals for treatment and support services under consideration
Ontario, Canada: The Project for an Ontario Centre of Excellence in Environmental Health (OCEEH): Learn about the groundbreaking 2013 Ontario government funded study that recommended a model of care and system of care delivery for people suffering from ES/MCS, ME/CFS and FM. OCEEH Partner: Association of Ontario Health Centres (AOHC) http://aohc.org About the OCEEH project, visit http://recognitioninclusionandequity.org/ OCEEH Documents, visit http://recognitioninclusionandequity.org/resources/
Taragona, Catalonia, Spain: Platform for those living with Central Sensitivity Syndromes
GOOD NEWS: FIRST RESCUE PLAN FOR PEOPLE WITH CSS
Canadian Human Rights Commission Publications
The Medical Perspective on Environmental Sensitivities, Margaret Sears, M. Eng., Ph.D., 2007. Report prepared for the Canadian Human Rights Commission. Download EnvSensitivity_Medical
Accommodation for Environmental Sensitivities: Legal Perspective, Cara Wilkie and David Baker, 2007. Report prepared for the Canadian Human Rights Commission. Download EnvSensitivity_Legal
Additional Medical and Scientific Sources
Stephen Genuis, M.D.: “The chemical disruption of human metabolism,” (Stephen J. Genuis & Edmond Kyrillos (2017): Toxicology Mechanisms and Methods, DOI: 10.1080/15376516.2017.1323986). This paper shows underlying mechanisms at the cellular level that account for a variety of illnesses which many clinicians have so far seen as separate and unrelated. From a Canadian practitioner/scholar with a stellar track record in treating patients too.
Association pour la Sante’ Environnemental du Quebec / Environmental Health Association of Quebec. P.O. Box 364, Saint-Sauveur, Quebec J0R 1R0
Phone: (450) 240-5700 http://www.aseq-ehaq-en.ca/
Destination NameMyalgic Encephalomyelitis Association of Ontario (MEAO) – also ES/MCS in mandate. 307 – 170 Donway West, Toronto, ON M3C 2G3
416.222.8820 or toll-free 1.877.632.6682 http://www.meao.ca/ E-mail: email@example.com
Invisible Disabilities Association. http://invisibledisabilities.org/
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM)
These two conditions can be devastatingly debilitating and painful, destroying lives – “invisible disabilities”, too. They often afflict people with ES/MCS, and certainly they occur on their own. All three have been called Central Sensitivity Syndromes (CSS), because they involve problems with the brain and nervous system. For definitions, for news and research, for ongoing action, here are some organizations to visit.
National CFIDS Foundation http://www.ncf-net.org/
National Fibromyalgia and Chronic Pain Association https://www.fmcpaware.org/
American Fibromyalgia Syndrome Association http://www.afsafund.org/
Millions Missing Campaign http://www.millionsmissingcanada.ca/
ME and FM National Action Canada https://www.mefmaction.com/
Myalgic Encephalomyelitis Association of Ontario (MEAO) firstname.lastname@example.org
* With thanks to Stephen Genuis for the quotation from Søren Kierkegaard