Excerpted from Recognition, inclusion and equity: The time is now – Perspectives of Ontarians living with ES/MCS, ME/CFS and FM. Varda Burstyn for MEAO and the OCEEH project 2013. PP 163-166
THE SPECIAL NEEDS OF ES/MCS
‘HOUSING IS OFTEN A NIGHTMARE FOR THOSE WITH ES/MCS’
DR. ANN MCCAMPBELL, CHAIR, NEW MEXICO TASK FORCE ON MCS
Many people with MCS have lost everything – including their health, homes, careers, savings, and families. They are chronically ill and struggle to obtain the basic necessities of life, such as food, water, clothing, housing, and automobiles that they can tolerate. Finding housing that does not make them sicker, that is, housing that is not contaminated with pesticides, perfume, cleaning products, cigarette smoke residues, new carpets or paint, and formaldehyde-containing building products, is especially difficult. Many people with MCS live in cars, tents, and porches at some time during the course of their illness. In addition, people with MCS usually have financial difficulties. One of the most unjust aspects of the anti-MCS movement is that many expert witnesses are paid $500 per hour to testify against people disabled with MCS who are seeking that much money to live on per month.
AIR QUALITY AND THE BUILT ENVIRONMENT – A DISTINCT ADDITIONAL DIMENSION
Those struggling with ES/MCS have a number of similar needs to those with ME/CFS and FM, especially when they have multiple diagnoses. However they also have needs that are unique, urgent and chronic, but very poorly understood by those who do not have this condition, including the vast majority of health service providers and planners.
The poor quality of indoor air has received a great deal of attention in recent years and rightly so. With energy-saving building techniques making houses and offices ever more air tight, and with increasing proliferation of unhealthy chemicals in everything from building materials to food containers to make-up, studies show clear correlations between poor indoor air quality and health status for the population as a whole. The American Lung Association provides a good summary of key AQI issues (1). They state that ‘The Environmental Protection Agency lists indoor air quality as the fourth largest environmental threat to our country.’ An online booklet from the EPA, ‘The Inside Story: A guide to Indoor Air Quality,’ introduces its subject as follows:
In the last several years, a growing body of scientific evidence has indicated that the air within homes and other buildings can be more seriously polluted than the outdoor air in even the largest and most industrialized cities. Other research indicates that people spend approximately 90 percent of their time indoors. Thus, for many people, the risks to health may be greater due to exposure to air pollution indoors than outdoors (2).
So one major conclusion of this body of research is that better indoor air quality should become a public health issue in its own right. This is an area where clinical public health needs to develop a presence and a practice.
However, for those living with ES/MCS, our most sensitive ‘canaries,’ poor air quality creates truly terrible problems because most indoor spaces are full of chemicals that they experience as immediately painful and disabling, indeed as toxic miasmas permeating every interior space. The resultant biophysical pressures on them to withdraw from all such laden spaces and, indeed, from all persons who use such chemicals in personal grooming, isolates those with severe ES/MCS to degrees simply not imaginable by most people.
SAFE HOMES ARE A MEDICAL REQUIREMENT FOR THOSE WITH ES/MCS
When sufferers do not have adequate economic resources to create safe spaces to live – safe oases, in effect – it is common for them to live in a state of homelessness, in tents, cars, on balconies or in stripped-down trailers in remote areas, or to remain very unwell in unsafe dwellings. Social relationships and belonging in familial, friendship and community contexts are undermined, not to speak of the ability to seek and access health and social support services (3).
WITHOUT SAFE HOUSING THOSE WITH ES/MCS DETERIORATE
That was a terrible journey. … It progressively became worse as I deteriorated. But … the City of Toronto Housing, when they got letters from my doctor saying I needed to be transferred, and even to the point where the doctor said I was concerned even about my life, that I could I die in … the available housing … Because I didn’t fit into their criteria that was, like cancer, they said the only thing they could do was put me on the waiting list which is ten years, that I couldn’t get special consideration for transfer. … I was … being kept in relapse because I couldn’t get to a place where I could be stable. So that was psychologically really awful, being in relapse and knowing that you don’t have to be. … It’s been very sad. Almost every avenue where I’ve needed support or help, the initial and continued response was no response that helped me get a foot up. MaryLou ME FM MCS
Therefore the issue of air quality, in all its multiple aspects and applications, is a truly critical dimension that must be factored in at the centre of care and support for this condition, not at the margins. It is not an optional add-on.
For those who are acutely sensitive to electromagnetic frequencies (EMF sensitivity) – whose symptoms are exactly like those of people with chemical sensitivities and often overlap those sensitivities – life these days can be equally nightmarish. Being in an environment, both built and outdoors, pulsing with unseen waves that make one sick, and being surrounded by people who never turn off their electronic devices brings on severe symptoms of disorientation, body pain, weakness, shortness of breath and so on. Sweden has constructed a micro-wave and device-free village for such people so they can achieve ‘avoidance’ and stay well in an environment that has all such frequencies removed. As with the chemically sensitive, removal of the incitant leads to restoration of normal physical and mental function.
Among specialist physicians, it has become axiomatic that the first line of medically prescribed treatment for those with ES/MCS is avoidance of incitants – at least to a level where symptoms disappear and stability is possible (4). The word ‘avoidance’ is so easy to say, and yet the reality is extremely difficult to achieve. It is a basic corollary of the avoidance axiom that ES/MCS sufferers cannot stabilize or improve unless they can practice avoidance in their homes. A safe home for a person with ES/MCS must be conceptualized even more as an assistive breathing device than as a shelter from the elements.
The central problem for the majority of people seriously afflicted with ES/MCS is that at the very moment in time when income generally drops or disappears, the costs of finding and/or creating a safe home escalate greatly. In the US, in 2003, the average costs for this were estimated at $57,000, when post-onset income levels dropped to below $20,000 per year (5). It is usual for people to move multiple times in search of a safe place, and to lose life savings as a result of financial penalties due to those moves. Homelessness is far too frequently the result (6).
SAFE HOUSING SHOULD BE BY Rx AND SAFE SHELTERS ARE NEEDED
Safe housing should be by prescription, too. It’s a medical need. CERA [Centre for Equality Rights in Accommodation] has done a post on the medical need for housing. We also need to be able to get away. There’s no safe shelter for us to go for two or three days. What almost did me in was asphalt on the road, four times, on Bloor Street when I was living there. I had no place else to go. The roof repairs, again, very toxic materials in asphalt. It almost killed me, but there was no place to go. We need to have places like safe shelters. LMS MCS.
SAFE HEALTH FACILITIES AND SCHOOLS ARE CRITICALLY IMPORTANT
By the same token, health facilities, in order to help and not harm must also be places where air quality is safe. Many people with ES/MCS do not seek primary care when they should because they must risk feeling very sick simply to consult their doctor. It is a cruel irony of modern life that hospitals are very dangerous sites for those with ES/MCS. A combination of poor air quality and poor-to-no understanding of the need for safe reception protocols can create a minefield of terrifying proportions. Many people with ES/MCS do not even seek specialist and hospital care when they need these because they are not prepared to risk their health in hospital environments.
For children and youth schools must be places where they are safe enough to learn and develop and come home healthy every night. This is not the case at this time. Above all, the use of no-toxic cleaning products, the banning of pesticides and the vetting of new equipment and furnishings for off-gassing of chemicals in schools would create an ‘equal opportunity breathing environment’. Such measures would benefit all children too, for children are much more vulnerable than adults to chemical hazards and deserve to study in a safe place. For chemically sensitive children, if the school is not safe, then a safe home becomes overwhelmingly important.
Hence, for those with ES/MCS, from the point of view specifically of health and social supports, living in a safe dwelling is a first-line health requirement.
WHEN SAFE OASES CAN BE ACHIEVED AND OTHER EXPOSURES MANAGED, WONDERFUL THINGS HAPPEN.
- People at mild levels of chemical sensitivity need never ‘crash’ into more severe stages, or can recover quickly from early ‘crashes’ when safe shelters exist to allow for safe short-term and emergency housing.
- Those who are already more seriously affected may recover to more mild levels and return to full productivity; or may be able to feel well enough that they can earn a living working from home; and certainly will have a quality of life that is bearable, even with severe ES/MCS when their dwellings support, not harm, them.
- Those who experience symptoms in more toxic environments beyond the home can still be functional parents and spouses at home, minimizing the cascade of negative consequences to families such a disability would otherwise bring.
- Children can recover from exposures in other contexts, or, if needed, have a place where schooling can proceed and a life built despite the condition.
- For elderly or more seriously disabled people, safe supportive/assisted living, long-term care and palliative care facilities – of which there is not one unit or bed at present – mean that daily life can be made bearable, possibly even enjoyable. Those with ES/MCS who live in facilities not adapted to their condition now suffer immensely. Life is shortened either through health stresses or suicide.
In all these ways, assisting ES/MCS sufferers to achieve healthy housing is the most health-effective and, eventually, cost-effective preventive or supportive measure that can be taken. At this time, however, only seven units of safe social housing (in Barrhaven, Ottawa) have ever been constructed in Ontario (or Canada, for that matter). Turnover is very slow and the waiting list very long, indicating a great need for such housing. Such housing should be understood within the same frameworks as both supportive housing (mental illness, physical disabilities) and as medical housing (safe breathing envelope.)
Finally, it would be impossible for persons ES/MCS at a certain level of severity to come for extended services at the proposed Ontario Centre of Excellence in Environmental Health hub unless a safe lodge is created for them (7). Most cannot stay at hotels or even the houses of friends, and cannot respond to treatment if they are not stable in a safe residence.
 American Lung Association, Indoor Air Quality, accessed September 15, 2013. http://www.lung.org/associations/charters/mid-atlantic/air-quality/indoor-air-quality.html
 United States Environmental Protection Agency (EPA), The Inside Story: A Guide to Indoor Air Quality, accessed September 15, 2013. http://www.epa.gov/iaq/pubs/insidestory.html
 Juliene G. Lipson, ‘Multiple Chemical Sensitivities: Stigma and Social Experiences,’ Medical Anthropology Quarterly, Vol. 18, Issue 2, pp. 200–213, ISSN 0745-5194, online ISSN 1548-1387. Quote: ‘Multiple Chemical Sensitivity (MCS), an intolerance to everyday chemical and biological Substances in amounts that do not bother other people, is a medically contested condition. In addition to symptoms and the ongoing difficulties of living with this condition, this hidden and stigmatized disability strongly impacts social relationships and daily life. Based on an ethnographic study, this article introduces the context of MCS in terms of cultural themes, the media, and the economic power of industries that manufacture the products that make people with MCS sick. Participants’ experiences with family members and friends, in work and school settings, and with physicians exemplify the difficulties of living with MCS.’
 Pamela Reed Gibson, Amy Nicole-Marie Elms, and Lisa Ann Ruding, ‘Perceived Treatment Efficacy for Conventional and Alternative Therapies Reported by Persons with Multiple Chemical Sensitivity,’ Environmental Health Perspectives, Vol 111, Number 12, (September 2003): 1498-1504. (Note: Participants had consulted a mean of 12 health care providers and spent over one-third of their annual income on health care costs.) Quote: ‘This study examined self-reported perceived treatment efficacy of 101 treatments used by 917 persons with self-reported MCS. Treatments examined included environmental medicine techniques, holistic therapies, individual nutritional supplements, detoxification techniques, body therapies, Eastern-origin techniques, newer therapies, prescription items, and others. … Both creating a chemical-free living space and chemical avoidance were rated by 95% of respondents as helpful. Results for most therapies were mixed.’ [Emphasis added]. See also Molot, 2013.
 See for example: Rhonda Zwillinger (Photographer), The Dispossessed – Living With Multiple Chemical Sensitivities, (Photo documentary, 1998). Available from http://www.rhondazwillinger.com/dispossessed.php?n=8 .
 For the importance of special housing, both for residence and for the OCEEH Lodge, see Environmental Health Centre Dallas’s page on housing available at http://www.ehcd.com/ehc-d-patient-less-toxic-housing-services/
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