Can healthcare do better for people with multiple chemical sensitivities?
Multiple chemical sensitivity, or idiopathic environmental intolerance, is a term that rarely brings its sufferers much relief. That’s because while MCS is considered by the Ontario and Canadian Human Rights Commissions to be a disability, a lack of understanding about its root cause has made it controversial.
MCS is characterized by symptoms such as headache, extreme fatigue, a stronger sense of smell than others, body aches, a loss of concentration or feeling dull or groggy, occurring in response to exposure to chemical compounds at doses far below those established to cause harmful effects in the general population.
Since patients present with different symptoms and triggers, it’s difficult to describe a typical case. It can affect different organs or systems with differing intensity and frequency, with some people finding they can withstand an exposure one day only to be knocked flat by it the next. Even a 1999 consensus criteria to help identify people with the disorder has not been universally adopted, with some research relying on broader criteria and other ones that are more restrictive.
About 2.4 percent of Canadian children and adults have been diagnosed by a health care provider with MSC, according to the 2014 Canadian Community Health Survey.
In response, the province of Ontario has established a panel to recommend research priorities and pathways to providing better care for people with MCS, fibromyalgia or chronic fatigue syndrome, three conditions that are thought to have environmental triggers but are not well understood by the public or the medical community.
“People who develop any of these three conditions tend to become disabled,” says Howard Hu, chair of the provincial panel, dean of the Dalla Lana School of Public Health at the University of Toronto and a physician with experience treating MCS at Brigham & Women’s Hospital in Boston.
“There’s no clear way of diagnosing them and most often they end up spiraling to a very poor state of health – as well as psychological state – because they just feel like they’ve been rejected by the health system.”
A 2010 report by the Environmental Health Clinic at Women’s College Hospital in Toronto found that 70 percent of patients with MCS, fibromyalgia, chronic fatigue syndrome or a combination thereof had stopped working.
They’d also made a mean of 10.7 visits to their family physician in the previous year – almost three times the number for the general population.
“The way these folks have been disrupted by MCS – a lot of them have to stop work, move out of the city, some have to live in special housing,” says Neil Stuart, an adjunct professor at the Institute of Health Policy, Management and Evaluation at the University of Toronto and a member of the province’s panel.
“Some can’t go to hospitals or emergency departments because the chemicals used to keep them clean make them sick. It’s ironic how inhospitable we’ve made the healthcare system to them, both psychologically and logistically.”
Cause remains unknown
Although research around MCS hasn’t clearly identified a genetic, biological or neurological cause for these symptoms, “that doesn’t mean there isn’t one to be found,” says Cornelia Baines, a physician-epidemiologist at the Dalla Lana School of Public Health at the University of Toronto, who co-led a series of studies trying to establish a case definition and looking at possible underlying physiological causes.
“The basic clinical situation for all three conditions is that because none of these have obvious physical signs of disease or obvious abnormal lab tests, there’s a healthy segment of the physician and clinician community who remain convinced that these are simply psychological conditions — or worse,” Hu says.
Those with the condition reject the notion that it’s a psychological disorder.
“This isn’t something weird or strange. What keeps us from addressing it is a kind of medical myth that got established and never got overturned and instead got institutionalized,” says Varda Burstyn, an award-winning Peterborough-based author and environmental health policy consultant who is living with MCS.
“The chemical industry has, for a long time, tried to debunk the reality of this condition,” she says. The increase in the number of people showing signs of the condition “is saying we need to clean up our environment, and that’s where resistance really comes in.”
“Chemical manufacturing industries in the US have lobbied very strongly against any dollars going to any research in this area,” Hu says, noting there have been no federal U.S. National Institutes of Health grants spent on MCS research.
Focusing on Function
A diagnosis is only part of the equation, says Tara Sampalli, Director of Research and Innovation in Primary Health Care & Chronic Disease Management at the Nova Scotia Health Authority, which funds the Integrated Chronic Care Services (ICCS), which helps patients manage symptoms of MCS.
“Our whole focus on care has been on functional health management,” she says. “We park the diagnosis. This person is not able to function, something in their physical environment is getting in their way, so how do we help this person function? Often we have the same conversation with their employer.”
“For most patients, a huge dimension is that they have learned to cope with difficulties fundamentally by avoidance,” says Richard Marlin, a psychologist and director and chief executive officer of Odyssey Health Services in Burlington, ON.
“There is no doubt that these patients are genuinely suffering and some of them really end up with very shrunken lives because of their suffering. It’s not imaginary stuff,” he says. “But the issue really is, is there an objectively definable disease or pathology that underlies their suffering or is their suffering more complicated than that?”
Marlin treats MCS with cognitive behavioural therapy, which helps “address the individual’s belief about their difficulties, about what they should and should not do, and their beliefs about what may potentially harm them.”
Clinicians encountering a patient with suspected MCS should start by listening, he says. “You have to start with validating their suffering,” he says. “If you don’t start there, if you instead start by saying it’s all in your head and we can fix this in three sessions, it’s certainly not going to work.”
The ICCS team also works closely with employers to find ways to bring patients back to work, whether through telecommuting, scent-free policies or by establishing clean office spaces, among other potential solutions.
“The needs of people with MCS go beyond just medical management. Often times, the impact is outside the walls of the hospital, in their workplace or in their own home,” Sampalli says.
Panel preparing recommendations
Although MCS is recognized as a disability, Burstyn says better policies are needed for helping manage MCS, suggesting those might include addressing air quality issues and establishing clear standards for accommodation, such as reducing perfumed products and other chemicals, and establishing a provincial body responsible for implementing and monitoring those standards.
“We really have to have these recognized, both as illnesses and as disabilities. And the reason that’s important is because we need clinical services and, as with any disability, social services,” she says.
Meanwhile, Hu says the panel is aiming to have a preliminary report ready as early as next month, with a full report coming in the next year to 16 months.
“When I see what they go through, it’s almost a human rights issue,” Hu says. “There are clinicians and others who think, ‘oh, they’re doing this for secondary gain.’ Believe me, there is no secondary gain. They typically lose any workers’ compensation claim, they don’t win in the courts, they get shunned by family. They sink to the bottom. There is no secondary gain. That’s why I see this as something that desperately needs help and research.”