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.”
The comments section is closed.
It’s not mental at all. I have actual rashes and physical symptoms to prove it is an allergic reaction. The issue is it increases inflammation so all the symptoms that come with increased inflammation occurs. For myself, my mucus membranes are especially sensitive to the substances that I have issues with. I also have nearly exposed nerves in my nose. For me, I am having anaphalatic reactions that cause an autoimmune response and my tongue, lips and throat begin to swell. All therapy can help with is help you acknowledge and find coping mechanism but it doesn’t treat MCS, it just helps you do symptom management.
I am so sensitive to scents they give me the runs and make me look like I had Botox in my lips. It also makes me dizzy, gives me a migraine thanks to my nearly exposed nerves in my nose and leaves me unable to process information. The inflammation I experience extends to my brain and I get hung over as if I drank excessively the night before from exposure to scents.
I have suffered with this my entire life but it got much worse and harder to ignore over time. Once I started to get hives on my neck, it was undeniable. MCS progresses to anaphalatic symptoms eventually and by not listening to sufferers now, we are effectively condemning them to low quality of life and severe disability. Not because it’s wrong to have reactions to toxic substances but because society thinks it is.
We have no reason to use such harmful chemicals other than corporate greed. These substances hurt everyone, they just hurt those with MCS more. Take for instance an apartment building, even while following the law in Ontario you can fail to ventilate the laundry room properly and laundry products are toxic. With regular exposure you’re causing a number of health issues, even to perfectly healthy people and for what? So your laundry smells strongly?
As far as I’m concerned choosing to protect privileges over human rights is inhumane and should not be tolerated. Undue hardship is ableist policy and says that money is more valuable and important than human rights. It is almost impossible to accomodate MCS on disability. We now have the issue that disabled people qualify for medical assistance in dying and it is easier to recieve medical assistance in dying than accessible housing. I know this from first hand experience. The worst part is my roommate doesn’t have MCS and the chemicals are so bad in some buildings, he will get congested and have the same symptoms I do, he just requires more expose.
Since Covid-19 our building has caused both of us to be severely sick as we have been exposed to laundry fumes from the improperly vented laundry room in our building. He also had symptoms from the construction which occurred all through Covid-19 while we were in lock down and he was working from home.
It isn’t all in my head and in fact, when an abled person is forced home to deal with all the same chemicals, they get sick eventually too. I just got sick much faster than he did.
I live on Long Island, NY and have severe MCS. I have thousands upon thousands of photos in which show my skin rashes, swelling, bleeding etc… as well as all blood work showing high IgE, WBC, gran, anc & low lymph. Blood work also for allergies to so many foods, everyday used products and their chemicals, I can’t escape.
I am at my wits end!
I am searching for any type of studies in which I can apply and or help. I strongly believe that science is missing the “physical” evidence in which I do have. If anyone knows of any organization that is looking for participates, I don’t want to sound crazy but I am beyond desperate to get involved to help bring awareness and put an end to this controversy and the stigma that surrounds this dreadful condition.
I can’t live like this much longer. It’s destroying my life, my health, everything…Doctors in my area have no answers and no idea how to help me. I would be willing to travel anywhere for help, etc. Thank you so much for this article and for bringing awareness.
Let’ s try.
WOW! Thank you so much for that wonderful compassionate and open minded article about MCS. It made me cry. I’ve had MCS for almost 40 years now. I got serious long term exposure to many toxic chemicals when I moved into a brand spanking new condo construction in late 1980’s when so few recognized or knew anything about environmental illness. It was not the only thing I was fighting at time. I was battling serious opportunistic viruses like EBV, HHV6, cytomyglovirus, etc.) so my immune system was at rock bottom. Also lived yards away from huge power tower (EMFs which were also not recognized at time) so even alternative medical doctors (orthomolecular) threw up their hands and could not help me. I was not able to work for many many years, lost all assets including home to keep roof over my head and went into serious debt.
Since then for most part I have been able to manage till recently. Got serious exposure to mold and traumatized by emotionally erratic alcoholic landlord and my MCS symptoms have come back in full force. Mold rxposure shows up in blood tests, mold plates and urine test. I now react to certain cooking odors which were never an issue for me.
I think it is unfortunate that the label it is given is multiple chemical sensitivities. It trivializes it and most non MCS people think you get a few sniffles from chemicals. My whole autonomic nervous system gets so hijacked and many many byproducts from that. Doesn’t matter how much meditation I do. It’s beyond my control once it gets hijacked, including emotional reactions.
thank you again for your understanding about this complicated condition, especially has nothing to do with secondary gains.
Hi I’m Sandra I’ve been living with what my physician calls fragrance sensitivity for more then 5 years. I’ve had to go home sick now they are doing Wsib and I’ve not been payed for time lost. I need a proper diagnosis and treatment. All my family physician as to offer is an epipen and antidepressants really discouraged. Any suggestions. Thanks so much!
Thank you for this article, I have suffered with is for years and there is very little out there about it. I am so happy to see this issue being addressed.
Hi, Paula. My name is Kevin, and I live in the GTA. I’ve had only three months of rapidly developing MCS, and it’s already taken my life apart. I’d deeply appreciate any information that you, or others who read this message, can provide with regard to health care services in Ontario that can assist not only myself but all others who suffer from this condition. My GP thinks I’m a hypochondriac at this point, but it’s not the case. I’ve been health my entire life until this hit me three months ago. All of my searching online has found only the Nova Scotia Health service, Integrated Chronic Care Service (http://nshealth.ca/content/integrated-chronic-care-service-iccs) in all of Canada. Anyone else who can provide information can reach me through this reply to Paula, or send a message to kevin.mcdonald1962@hotmail.com . Thank you all for any help that you can provide.
Wow. At now 81, diagnosed 1974 ,by our great pioneer Dr, John McLennan, Ive rarely seen such a collection of great comments and research references etc, as given here. Thank you to all. As I was dismissed from my lifelong work just three years before retirement, having lived and worked YT to NL, I certainly share with each of you your personal Via Crucis. (A subsequent stressful three year legal Accommodation battle was finally settled out of court, enabling us to keep our home we spent thousands on from our small pension to make environmentally safer.)
Yes the excepting of MCS is almost not exciting. Was diagnosed at the age of 35 and now at 81 life is a challenge. My family doctor files my symptoms as deranged , and with here passive aggressive nature never ones showed interest. Here response as always would be ” I do not know nothing about MCS.” After years of pleading I finely managed to get to see a Neurologist who would treat the associated migraines and blamed the use of Tylenol 1 as the cause. Note I never took more then 2 tablets and now I have bin promoted from the village idiot to a drug user. No more singing the blues. What I notice is that my brain will reverse when under symptoms. My son who also suffers from MCS made the statement :you know me,mixing my right and left, Both my son and I are well educated, my life is a torment because of pain and stress. My son was educates in Theology, Psychology and in Social work and works for 14 dollar as a Security guard. Note my Mother as well as my Grandfather suffered the same. My Mother blamed here illness on poison to kill worms in a wood floor We are from a very old German family. At this phase in my life my strength leaves much to be desired and help ones a week would be a blessing, is there hope, and where do I find it. just walked out on my doctor because after many times requesting appointments first thing in the morning without having to wait in a for me polluted place ( neon lights people with fragrances from laundry deodorant music for hours was not manageable. ) Secondly my right , left confusion is there something one can do. Dyslexia is only present when on a computer .
I have mcs
Who told you that???
I’m going through everything that was mentioned. Even the slightest scent gives me a headache and buzzing in my head. It is a horrible condition and no o e believes us. I feel it has taken control of my life.
Hi. I agree we need to stand up to chemical lobbyists against research into their chemicals causing mcs. My belief is our immunity is slowing decreasing that’s why theres more viruses taking over the world. We need to get back to nature. Too much wealth importance in the world sadly.
The chemical industry executives who lobby against research funding for MCS should be lined up and shot, or worse, leave them in a room with me for 40 minutes. They’ll be offering their own money for the research. The cynical, cold hearted sons of bitches.
“Sinking to the bottom”—that is exactly what having MCS is, especially when you’ve been battling it without legal or medical help, for years. My daughter and I live in Arkansas, United States; I became afflicted with MCS after her birth; she was born with immune system deficiencies and allergies that physicians would not address because they said she would “grow out of them”. The birth was complicated by anesthesia over dose during a C-section; I went into respiratory arrest and she went to an incubator and respiratory treatment. She never regained her health; by 13, her chemical sensitivities were so severe, that I had to home school her. She is now 35; she continues to fight to stay in a workplace that she will not get sick in. She is a medical professional, herself. Where do you turn for help? I am surprised that people outside of U.S. are having the same problems! Your info here is interesting; I think the chemical corporations are winning here.
(pg 4)
If any of us expects to get help for MCS, we can’t wait for medical professionals or society in general to do something about it, because no one is publically standing up for us. We know that very few believe that it even exists. Medical staff generally just offer invasive and usually ineffective treatments, and drugs that usually cause other problems, and then they send us around the medical circuit for testing rather than naming MCS as a new one, and finding answers. Even medical research (to identify MCS publically) often depends on funding that is provided by the very people who contribute to environmental pollution and public health problems–and who can also refuse the funding when it conflicts with their profits and culpability. So it’s useless to count on any of them. MCS has been ignored for decades, and our government gave no thought to the great numbers of people this has likely already affected, and will continue to steadily affect unless we stand up and be counted. So I feel that I have to do whatever I can right now, with the time I have left, to draw attention to MCS and the chemicals in the environment–and political attention at this particular time being on the environment, has a greater chance of not only greatly improving my health, but also the health of everyone with MCS.
I’ve never been one to get involved in politics, but it seems to be the only way to draw attention to this issue at this time. Democracy works works by majority. If everyone votes we have a true count of majority. For decades our political system has failed us and many of us have stopped voting–or we’ve just been “strategically” voting for the “lesser of three evils” in the largest three Parties in the hope of moving the majority over to another party. But that doesn’t work, and it’s a waste of your vote. Those three parties are basically all just doing the same things, so nothing changes if one of them gets in–and it also makes the smaller parties (often with better ideas) less effective on governmental decisions because they don’t have enough backing from the people. So we all need to vote for the party that we truly believe will have the best overall plan for human life and well-being. And if people with MCS identify themselves in greater numbers, by telling their preferred Party and the reigning government that the current environmental, medical/ housing/employment systems and policies are killing us, and/or are ‘roadblocking’ our Human Rights in these areas, (because our health condition is not recognized in any of them), the government will have to stop ignoring us–or better yet, we’ll get the right government in. A democratic government is required to pass laws based on what the majority needs/wants. And a Party, forming majority government, who is striving for the same things we are, will make better choices for us.
One small 15 yr old girl (Greta Thunburg) sparked thousands of young people in every city around the world to stand together in public protests, demanding that governments all over the world clean up the air, water, food, and earth in our environment that we all need to live–and if she can do that, people with MCS can also take a stand. We don’t even have to go out and walk on protests; we can protest by internet, quickly and directly right into the political offices, without leaving our homes. But we each need to take an active role by emails, letters, and phone calls to insist that the current government, who are supposed to protect all of us, listen to us and clean up the chemical-laden environment that has caused our MCS. We need to insist that they take legal steps to eliminate the chemical emissions robbing us of our health, from gas and oil powered vehicles (especially diesel trucks that are largely not monitored), industries (that too often ignore laws that protect the environment and public health), fossil fuels, everyday home and personal care products, paints, pesticides, etc.– and also that they control the indiscriminate cannabis smoking that currently lingers in the air everywhere, before it’s too late. Also, contact the political parties who were already pushing for a cleaner environment (who will more likely bring our issues out in the open) to give them more accurate information from the MCS public about what’s really going on with our health. We need to give those parties more power to bring, and our condition, to light.
If thousands or millions of emails (etc.) invade our government MPs, MPPs, ward councilors, and even the Prime Minister’s offices from every village, town, city, province, and state of every country, it will make an impact, and will stand as a true count of how many of us really exist. With all the MCS research that you all stated in the comments of this article –including links to the information–you can make compelling arguments for the impact these chemicals in the environment have had on your lives, that your health is not being taken seriously, and that it is against Human Rights Law that your needs as citizens are not being met. MCS is named as “an invisible illness” in Canadian Human Rights Law (check the internet for other countries HR law), and government needs to know that we’re aware of our rights. Our numbers–which may just form a majority in the long run–will force recognition and change. Do whatever you can no matter how small you think it is, even if you’re not always well enough to write letters or emails, or make phone calls. It takes no more effort than writing to these MCS forums–but will make us more visible to the people that control the environment. (Btw, your local politicians’ emails, addresses and phone numbers are all online, but I’ve found that emails have gotten the most immediate attention from my local politicians. However, if I’m the only one contacting them on this issue, they’ll continue to ignore MCS, and none of us will have any chance of recovering from it).
We know that the only real ‘treatment’ for MCS is avoidance and detoxing in clean air–so the more chemicals that are eliminated from our air water and food, the less we are exposed to, and the more likely we are to restore our health and recover from MCS–even if it is never recognized medically. The time has come for us to speak up for ourselves. I encourage everyone who can, to make a stand describing their own issues, research, etc. to the politicians who make the laws. Won’t you join me in taking this stand? Do you know others who will too? Please forward this message to others you know with MCS to give them a chance to make a choice too.
To each and every one of you who responded in the comments, and for all others with MCS that read this, I truly understand what you’re going through, and I applaud your efforts to help each other. I continue to hope for us all to be healed, and to work toward that end. For further discussion, I can be contacted at: aladdinsrose1968@hotmail.com. Put “MCS response” on the subject line (so I know it’s not spam).
Thank you for your time, and anything you are able to do. Stay safe, don’t give up, and take back your own power in controlling your health.
Rose
(pg 3)
Part of this attitude stems from the common assumption that cannabis is “natural” and therefore not harmful to anyone. But that is totally not true–and the government has covertly contributed to this by not making provisions for, or even educating people on, adverse health effects on the general public. And it is still a drug and quite dangerous–even to cannabis smokers (as many reports in the media and medical studies were finding out even before legalization because the original natural cannabis plant has been modified over the last decade or so to increase the THC levels for a greater high–which has changed the plant to have much more potent and dangerous properties). The fact is, drugs can and do cause allergies and death to people who don’t have the condition for that drug–and natural plants are no different. It’s like saying that taking someone else’s prescription insulin or heart medication is totally safe for anyone when they don’t have diabetes or a heart problem. It has never been ok before, for anyone to take a drug they don’t need, or to force it on the public, especially when it worsens their own medical conditions. Having MCS magnifies the effects of acute sensitivities to any chemical–which for me, includes the strong chemicals of this “plant” that I am now constantly involuntarily ingesting. In time, it is very likely to kill me as the deterioration and growths in my lungs and thyroid are already showing, and anyone with MCS can be similarly affected if they also have the inability to process even low levels of these chemicals. But under Canadian Human Rights Law, we have the right not to be forced to ingest substances–legal or not–that we don’t choose to, especially if it makes us sick. So the government has ignored the fact that ALL the people, not just some, have a right to be accommodated, especially when it concerns adverse conditions forced on the public health and mortality–and legalized, indiscriminate cannabis smoking “to relieve the pain and suffering of some people”, while causing pain and suffering in others, is irresponsible. They need to find a better way to distribute cannabis for medical use that also protects non-users–and there are other options that would accommodate everyone. So this is also very much a part of the MCS issue, as well as an environmental issue.
I have found roadblocks at every turn in trying to find help. I tried contacting every social and health agency I could think of, but they couldn’t help because the government didn’t research the adverse public health effects of this drug before they passed the cannabis law, and didn’t make provisions in these agencies to help with public health issues. They need to know of these problems because they’ve blocked other avenues of getting help. I too, am on an 18-month waiting list for the Women’s College Hospital MCS/ES Clinic, and still waiting. I’ve been to the Landlord Tenant Board, which took 4 months, 2 Hearings and a mediation–and I still ended up paying for half of the $1400.00 top-of-the-line air purifier to lessen my illnesses at home–but the cannabis has still not stopped coming into my apartment. I lost an additional $720.00+ last winter, buying supplies to stay alive outdoors (because I was forced to leave my home every day), filling and caulking every hole and crack in my apartment, buying fans for every window to blow out smoke, etc. etc.–and I’m still paying loans for the legal fees, and the purifier. And somehow I’m also supposed to find $189.00 every 3 months for new filters for this purifier–which is also not covered by any “assisted device” program (organizations that are set up to give people devices to help with their health conditions) because respiratory illnesses are not covered on their list of health conditions). I can’t even take it to The Human Rights Commission until I pay off the loans, and save up more money–but I don’t know if I’ll live that long, because living through the summer was hard enough. So I was forced onto a very low income because chemicals made it impossible for me to work in most work environments, and now I’m forced, on a disabililty pension, to pay for all of these extra devices myself to try to stay alive. It’s no wonder many with MCS end up on the streets. We don’t have help, and are forced further into poverty paying for devices and legal representation that we can’t afford, and waiting months or years for help with housing, Landlord Tenant issues (which is sometimes not even adequate for our needs), and Human Rights issues.
(continued on pg 4)
What are you talking about there is so much stigma about cannabis I can’t even access it and I have a prescription. Cannabis actually makes my MCS symptoms subside but everyone knows and understands, smoke = bad. No one says differently and I think you’re just extremely bias because it hurts you personally. While it sucks we could not possibly live in the same building because I smoke all the time to manage my symptoms and you are allergic to my medication, it doesn’t justify stigma towards cannabis. I’m in a smoking building and I would guess you would not be. The best thing we can do is have different types of housing to accomodate different disabilities. Don’t go war on cannabis or you will make enemies of your allies. I also want you to live in a space with proper air quality and no exposure to your allergens, I just think everyone deserves that.
To clarify, I cannot access it via licensed producers. I have to have my friends and family grow it for me or else I cannot afford my meds.
(pg 2)
And this is a good time for it. In our recent (Canadian) election, major attention was focused on the environmental crisis. Most of the political parties were pushing for government to do something about it, and news articles all over the world since then have been reporting the environmental air pollution crises in India and China, etc. Greta Thunburg started it, by raising awareness everywhere, and moving people to protests that take a stand with their governments. This young girl created a world movement, for cleaning up the environment. And we are sick because of decades of chemicals in our environment. In Canada, the recent cannabis legalization is also part of this environmental issue affecting MCS, because the indoor and outdoor air is now being legally polluted with dangerous chemicals, increasing the pollution in the air everywhere at an exponential rate, and it needs to be controlled. So MILLIONS of MCS sufferers making themselves known will present evidence of health problems caused by chemical pollution in our environment–as long as we respond in great numbers. Our MCS information will give any political party that is committed to the urgency of cleaning up the environment, the ammunition and proof to push for, and implement, chemical free environmental practices. Because from what I’ve read from the Party mandates, even the most environmentally conscious Parties are not even aware that some of us are getting sick FROM cannabis smoke, as I am.
My MCS condition worsened greatly right after cannabis law was implemented, when someone suddenly started smoking cannabis daily, several times per day, in our non-smoking building. His cannabis smoke/chemicals rising into my apartment caused immediate, severe reactions in me, every time I even smelled it. I was constantly choking with bronchial constriction and swollen neck glands, swollen eyes/hands, breathing problems, severe dryness in my skin/nose/mouth, and dryness in my esophagus (making my food get stuck), nausea, intestinal cramping and diarrhea, migraines, and numerous other new symptoms, depending on which strain of cannabis was used. The first time I went to the hospital for that, the small breathing tubes (bronchiole) in my lungs were found to be not open enough to take in air, so I was given two asthma treatments and a lung exray before I was safe to be released. And although that x-ray showed no other problems in my lungs, 5 months after exposures to daily cannabis, “a few”small nodules developed in my lungs, and a very large nodule developed on my thyroid–none of which showed up in the previous x-ray. Then during the following summer, with steadily-increasing cannabis chemicals outdoors from hundreds of cannabis smokers, smoking it all over town, I could no longer get out of it to detox, or to recover from it to any degree, even in my own home. I didn’t think I’d live through the summer. Gratefully, I’m still here, but I’m not sure how long I have, with cannabis smoke often hanging in the air that I can’t always avoid. There’s nowhere to find any fresh air anymore. And we all know that being in fresh air was the only real relief we had from the effects of chemical exposures. So legalized cannabis has also become part of this environmental issue.
However, I wasn’t initially opposed to legalized “medical marijuana–as the government originally proposed it–in pill form, pre-baked edibles, and even inhalers–and with legal restrictions in certain public places, as well as non-smoking buildings (which I already live in). But these restrictions have been ignored, with no means of enforcing them put in place, since recreational smokers were added to the mix just before the legalization date. Now suddenly everyone was is allowed to smoke it both indoors and outdoors. And although I had previously known both medical and recreational cannabis users who were responsible and considerate enough not to force their smoke on others, I had also known others as fellow tenants and in other situations–who were decidedly not. And the reality has been, that far too many cannabis smokers have had no consideration for other people regarding their cannabis smoke since this law passed, and it has resulted in wide-spread cannabis smoking everywhere, making me, for one, constantly sick. There’s no reason for this increase, as there were always numerous cannabis smokers before, but they kept it mostly contained. However, this law seems to have unleashed a belief that cannabis rights are more important than any other rights, and there is no longer any concern for non-cannabis user’s rights or health conditions.
(continued on pg 3)
I’ve had MCS for the passed 27 years. I also share so many of the symptoms and experiences of almost everyone who commented here, which started with an apartment infested with mold, at a time when my life had fallen apart due to a Family Law court case over 2 1/2 years, and my physical and emotional well-being was already at it’s lowest. This resulted in severe asthma, anemia, sudden thyroid problems, and panic attacks. My already compromised immune system was unable to combat the subsequent sensitivities to chemicals that developed in house, laundry, and personal care products at home, then multiplied and worsened with sudden increases in pesticides, paints, cleaners etc. outside the home. And now I also have severe reactions to even smelling alcohol or cannabis fumes, (often causing me to be sometimes bedridden/sick for days) as well having ill-health with many other substances, as well as humidity and bad air quality, and some food and beverage sensitivities. The disbelief and lack of help from medical staff, family, and other members of society caused fear for my life and hopelessness, and worsened the panic attacks.
For years, I thought I was the only one who had this condition, and the medical community treated me as if I was. Doctors often dismiss MCS because it is not part of their training–and rarely do they even try to research what it actually is. They try to fit our symptoms into some other known condition, and bypass the millions of people who are showing the same symptoms, so it never gets recognized–making our lives much more difficult in getting help for medical, employment, housing, Landlord-Tenant Board issues, etc. Many doctors are even still ignoring the abundance of information that MCS sufferers themselves, are finding through their own research. There are 1.2 MILLION listed as just the Canadian MCS population (I am Canadian), and the U.S. has at least that many from what I’ve read, so how many more are all over the world? But with even that many people having the same symptoms, there is clearly enough evidence for MCS to be recognized as a valid health condition.
So I tried to find other MCS sufferers to meet with, in my area, to bring attention and public acknowledgement to the condition, to support each other, and to exchange information. I haven’t had much luck locally, but there were many online. Eventually, it occurred to me that because we are all often home sick with exposures, and just aren’t physically safe in many environments, we aren’t likely to join or respond to groups with unfamiliar environments. However, if the MCS community makes itself known by contacting their local politicians at every level, it will draw attention to MCS everywhere. Even though many of us are unable to leave our homes for very long, if at all, many have written in, to various onlines forums, such as this one, to make our condition known and share our own research, so we are all also capable of writing to our politicians (who make and change the laws).
(continued on pg 2)
Virtual reality is a God sent technology I swear. I can’t leave my home but I can visit other people and places.
Thank you for addressing this issue. I’ve almost given up but this article gives me hope that somewhere some understands and is possibly willing to fight the chemical industry to try to save our environment.
I suffer from MCS For years have been dealing. No make up no shampoos no creams no cleaners no soaps. No candles smell etc. Have an absolute terrible time. Mostly feel fluish head crawly and just sick all over. My naturopath Dr. perscibes Quercitin and copper It seem to bother me. Life is no fun at all. So discouraged.
Lana,
I know what you’re dealing with and understand your suffering. I’ve been dealing with this for 10 yrs and found one day at a time is about all I can hope for. I know someone will soon find a way to correct the damage and changes chemicals have made to our DNA. Please don’t give up hope. Look for a support group. I’m searching for one now somewhere here in the Midwest. I might have to start one! Praying for you and everyone else with this horrible illness. P
“almost” a human rights complaint?
I have MCS. Does any one know how to financially survive in Canada while living with this? I can’t work anymore because of this, can’t compete and no one wants to hire me or I get fired because of the symptoms. I’ll soon be homeless.
You can get on disability for depression as a secondary symptom for other conditions. It’s a shit way to do it but I had to. My most debilitating conditions weren’t considered valid but because they have ways to measure depression, they can use that even if it is secondary. You just have to have a long enough history of it on file in my experience and then they accept it. By the time I was accepted though I had 10 years of history. Originally my conditions were completely overlooked and they thought it was just depression. Funny enough that actually helped me get on disability. Of course disability isn’t enough to actually live well on, but it’s all that there really is unfortunately.
I would like to hear about any reasearch in mcs, as I suffer from t myself
I Have been suffering the debilitating and emotionally draining effects of MCS for a few years. I am 58 years old, I used to be extremely active, now I usually don’t leave my house. I have worked in a wastewater treatment plant for the past 9 years and have been exposed to H2S ,mold, rust and other chemicals,12 hours a day 48 hrs. a week, with no ventilation and inadequate protection . April 2019 I left work when I could no longer function mentally or physically. I have been attending ICCS in Fall River since last September ,have been diagnosed with MCS, but with no improvement in my condition. I have been to my family Dr. dozens of times ,2 ENT dr’s , lung Xray. ,face X-ray and waiting to see a neurologist.,all at my request.No one can explain the burning in my face, teeth paining ,brain fog, nauseated feelings, fatigue. There have been no shortage of prescriptions tried. It has been suggested that I should see a Physiatrist. I have been employed by my company for 34 years and they deny any my health conditions are work related. I have been denied short term disability benefits from SunLife twice, WCB has been processing my claim since February, with no end in sight. I am selling my house due to no income and in the hopes that I can get help outside of Nova Scotia by a doctor somewhere. I have read all the comments from people suffering ,it is heart breaking , but it does make me feel less alone .
Hi, Kevin. My name is Kevin, too. I am a 58 year old man living in the GTA of Ontario. I’ve had only three months of rapidly developing MCS, and it’s already started to take my life apart. I see that you live in Nova Scotia. All of my searching online has found only the Nova Scotia Health service, Integrated Chronic Care Service (http://nshealth.ca/content/integrated-chronic-care-service-iccs) in all of Canada that actively assists with MCS, so see if you can contact someone there. I wish I lived in Nova Scotia. You can send a message to me at kevin.mcdonald1962@hotmail.com if you know of anywhere in Ontario that has the same health service and can pass that information along. Thank you.
K. Crispin. Just read your post. Do you know of any toxicologists in the uk who’d be prepared to do that test on me? I’ve not been able to find a Doctor able to carry out tests specifically for MCS I’d be very interested to see any of the reports, especially any that you have from the uk please?
Yes I worked adjacent to a window of a autopanel beater and spray painter I had also to sell furniture and new carpets and diesal lorries.Now everything makes me very ill and everybody refused to listen because no doctors in UK and no financial help from either the courts or social funds.
If anyone is interested in either renting or owning in a small safe place between Nelson and Creston BC please contact me. I have had MCS for 50 years and was forced to leave Saskatoon because of the air. Through trial and error learned how to make my home safe but could no longer go outside. Was unable to find good food, even spending $2,000/month for 2.
This place will have 4 apartments. Heating and cooling will be done with heat pump. Forced air will be completely filtered, including CHARCOAL. Charcoal is the only way to remove VOC’s. situated on 20 acres above the wood smoke from neighbours. Food will be available from Green House, gardens, free range chickens for meat and eggs (soya free feed). we will have a dairy cow for our own grass fed, raw Kefir, yogurt and butter.
Doug Halstead 778 212 3440
All power to you for what you are doing! I hope others will follow suit where they can to help alleviate the suffering for those with MCS. Very best luck to you. H
Wow how is it going? I have multiple air purifiers with charcoal filters to deal so I completely agree with you about the charcoal. If I could move out there I would but I’m stuck in Ontario because that’s where my support system is. I have often dreamed of living in the middle of no where and having my own farm and garden to provide for me but I have never been able to make it happen. I hope that you have succeeded. Cheers!
As a sufferer I fully hope there will be more research and understanding of the debilitating syndrome. I am absolutely down and out with MCS and without huge amounts of money, one has a very tough road ahead, if at all.
Is this report now available – thanks
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.
Human Rights issues regarding MCS are quite common. The pushback is similar to when smoking was banned. It appears people are equally addicted to fragrance which contains some of the same chemicals. Ironic? Cases of MCS are on the rise and bees are dying because of chemicals. How are countries with less fragrance doing? How are the bees and rate of MCS there?
Thank you for this article. I have MCS and am looking for any information regarding sleep apnea equipment (machines, masks, and tubing) as a problem for people with MCS. The gassing-off of plastic in this equipment pollutes the air that is breathed in by the patient with sleep apnea. The result isn’t a refreshing sleep but waking up with migraines, fatigue, and feeling sick.
Have you called your oxygen supply company? Perhaps they could find something made out of ceramic? Or adapt a mask you can use.
Sorry Judith I don’t have much to offer you, only that I can fully relate. After buying a very expensive air purifier hoping it would help with my MCS I eventually found out that the plastic casing when even slightly warmed made me react. So I feel for you. I am sensitive to all plastic, the glasses I use to read, everything is plastic, even my night guard, the dentist said it would be impossible to react to such an “inert” item, so I went to the office, put the guard in my mouth and asked to be checked in 10 minutes, the dentist was flabergassed.
If you love cantaloupes, have you noticed how the taste has changed from natural sweet to a weird taste? My point is how can MCS sufferers like me avoid chemicals. My first rude encounter with chemicals happened at 16. The bus I was travelling in passed by the oil refinery. My body went into shock and I felt paralyzed to the point where I went limp and unable to get off the bus at my destination. Luckily my uncle was with me. I am now just shy of 72 and it has just gotten worse and along the way, I have not made friends, but arch enemies because I made it known to people that the perfume they are wearing contains chemical. Chemicals in perfumes, beauty products, especially vaseline intensive lotion, pine sol, mr clean and God know what else makes me sick to my stomach, burning eyes, headaches and more importantly confusion to name a few. I have literally, on occasions, bawled with pain as soon as the scent hits me. Hit my fist to my desk, can’t think for a good while. So I would stay late to finish my work. I have fights with the people in my household, get off buses and subways as soon as I discern the offender. Even suicide has crossed my mind. I am always searching for remedies, but I have yet to find any. I spend so much money on acupuncture, chiro and physio, but the relief is just so temporary. Is there a colony for hermits?
check this out, I only just found out myself… https://www.aafa.org/latex-allergy/
food and latex, or plastic – who knew.
Ontario has safe housing for us, why is bc so slow in approving housing for us living here?
I do not know but I would love to stay in touch – I’m on the Island but am desperate to find something/anything clean that is affordable. When I moved her a few decades ago I did so because I perceived BC being so environmentally correct, sadly found out we are similar to most other provinces.
Where is this supposed safe housing? I couldn’t find it in my area. I’m in Ontario too.
I will take any advice or help out there. I live in Canada and work for the Federal Government of Canada. It has been a large fight to get any help at work. I have been asked to wear a chemical/biological warfare type mask to be at work. Management will tell this to me rather than ask the people wearing perfume to stop wearing it. Signs or posted everywhere, no enforcement exists. I am really fit but when I am around perfumes, strong cleaning materials, body lotion, etc, etc. I feel weak, sick, nose bleeds, headaches, short of breeze, confused, etc,etc sometimes vomit. Chemicals such as perfume, hand creams , etc used for personal care is like Kryptonite to my feeling of being like superman when I am in free and clear air. Human Rights will not or can not help because I have a union where I work.
Shame on your management, why should you have to wear a mask? Maybe things would be different if they started having problems!
The accessibilities act for federal buildings should apply to you now so hopefully they actually act in it. But yeah, it seems most accessibility policy is just lip service. It is a human rights violation but accessibility policy says may instead of shall and or has financial limits to possible accessibility standards, which means they don’t actually adhere to human rights at all, they have built in excuses not to.
I do suffer with multiple chemical sensitivities mine was due to living with mold in my air ducts that was not seen for four and a half years. What you have described in your article is absolutely true that there is not any help being given from insurance companies to help treat MCs. And as with other conditions such as Lyme disease the insurance companies as well as the medical community looks at you like you have three heads and that you’re making these symptoms up. The symptoms are real and severely debilitating physically and mentally. Does anybody know about the DNRS program( Dynamic neural retraining system) started by Annie Hopper who are self had multiple chemical sensitivity?
I’ve also heard that people with multiple chemical sensitivity can be detox or desensitized don’t know much about it if someone could inform me I would greatly appreciate it.
This issue is black and white. There is the chemicalnindustry and there are the victims like me who have extensive supporting medical results that were never even shared with me until i.began vigilant investigation into my own medical records. MCS definitely shows up in your immune responses blood tests and other ways but the health care industry is not educated to focus or recognize the significance. Its disgusting and by my definition criminal to call this condition a psychosomatic imaginary thing and instead of our government making motions to incarcerate people who critisize religion why not incarcerate people peddling a myth that is medocally substantiated and is ruining healthcare for sufferers??
Marginalized in the workplace, shunned by family, compromised quality of life and reduced/lost employability which doesn’t get the sufferer any financial or social benefits. These all hurt, a lot. These aren’t just words. If there’s a gain I’m missing, I’d love to know what I’ve over-looked all these years.
Thanks for this site and for your understanding comments.
Six years of living with MCS this has cost me everything, home , job , family friends I live in the bush to get away from people and in the winter I lock myself in a room if I can find one. The last three years on welfare, living in my car, tent or ? because I can not work and when I told my doctor laughed and told me to see a shrink. I am going to be 60 on my next birthday and have worked hard all my life and now I pick up garbage and pop bottles to survive in CANADA.
It’s time something was done to improve your life and that of all MCS sufferers!! Hope that you find a way.
Not, disabled at this point but by the time I hopefully can enjoy, my life won’t be able too!! I am short of breath, having trouble breathing,develop rashes and can’t taste my food.
Not, disabled at this point but by the time I hopefully can enjoy, my life won’t be able too!!
I am chemically very sensitive and have been since 2012. I was living in social housing at that time for 6 months after physical abuse of my ex and later developed breast tumor that were benign at that time and fibromalgia. I realized that my lymphatic system and sinses after a long flu , my neighbor was vaping drugs below me and spraying downy and heavy industrial odour eliminators everytime he smoked . I began to get really sick and when confronted everyone including TCHC housing and the tenant and the Health Inspector of Toronto who showed up at my apartment that they smelled nothing. the health inspector had notified the housing office he will come over the day before and the neighbor below was notified since the superintendant was friends with him. I suffered homelessness after that because I moved. Not my worker , social housing , nor the City got back to me nor my doctor. they all thought I was crazy. then I moved in with an old friend I knew from University of Toronto we used to be together , the place we moved to had drug addicts smoking and vaping in the basement and spraying ozium , and fabreze and or Downy air freshnor right into the air system of the building to mask the smell of drugs and their dog poo they dumped into garbage chute. I moved out after complaining but nothing was done about it. the environmental laws in Toronto are like no recycling and dog poo okey to dump into chutes , they can not come up with law or containers to put outside for the dog poo. and the companies slum landlords don’t bother investigating what toxic industrial products their janitors are using , or hwo the tenant who claims he is disable and old or a young college student is using the apartment as means to buy his vape crack meth or weed online and resell and do it in the basement thru fabric softeners , the companies dont come to see what is going on only sensitive people like me narc dogs know what underneath the smell is there. people like me need to be believed because I meet people like me more and more everyday. and unless we keep on consuming and importing and selling cheap air freshnors when essential oils can be more tolerable , more and more people will become sensitive to these candles and fragnances that make us all ill. alternatively, its is a way to detoxify to survive. since the whole consuming industry and the Trudeau govt that made vaping legal is responsible directly to adding more toxicity into people’s lives.
I just discovered this discussion. I hope I am not too late to join in. First of all, I have 40 years lived experience with MCS, Chronic Fatigue and Fibromyalgia, including 31 years of being physically disabled and dependent on the Ontario health care system.
Dr. Grace Ziem, M.D., Dr. P.H., who is a Doctor of Public Health at Harvard and who has written toxicological fact sheets on about 1,000 chemicals for the New Jersey Department of Health, strongly advocates that the term used to describe us should be Chemical Injury, instead of MCS. About 14 years ago, I adapted to using Chemical Injury and my experience has been that nurses, family doctors, emergency doctors, and government officials take it more seriously. Instead of skepticism and ridicule, I usually get serious investigative questions. This is especially true when I discuss the basic principles of clinical toxicology, and inform them that my body has a difficult time metabolizing and eliminating toxic chemicals. Since all doctors are trained in basic toxicology, I have had far greater success and far less stigma and skepticism since I changed my terminology.
Experience has taught me that my reactions are definitely toxic reactions and not allergic reactions. People never seem to understand or believe our intolerance of exposure to toxic chemicals, if they are looking at our health challenges through the lens of allergies. However, when they look at our health challenges through the lens of toxic reactions to toxic chemicals, they begin to understand and believe the seriousness of our exposures.
If I know the product to which my body has been exposed, and if it has a Material Safety Data Sheet (MSDS), the symptoms of my toxic reaction are often identical to those stated in the MSDS. Also, I have learned that with pesticide products my symptoms are often identical to the toxicological symptoms experienced by the laboratory test animals.
Scented products don’t list their ingredients nor their MSDS. Most products containing toxic chemicals don’t come with a MSDS. Therefore we have no way of verifying or proving that we are probably reacting to the inherent properties of the toxic chemical ingredients in the products, and that our symptoms are probably identical to the toxicological symptoms experienced by the laboratory test animals. Those facts are kept from us by “patented company secrets”.
Also, we don’t always know to what we have been exposed. For example, it was only 7 years ago, in 2011, that the Ontario government acknowledged that it had applied Agent Orange on its roadways and railways in the 50s, 60s and 70s. Since I grew up beside both a roadway and a railway that was regularly sprayed with Agent Orange, and since I played with my siblings in the ditches of both the roadway and railway following the spraying application, I now know that I had major exposures to Agent Orange every summer for the first 19 years of my life.
Recently, I emailed the Task Force strongly advocating for the creation of a low-toxicity village, in which all the houses, offices, stores, churches and so on are low-toxicity buildings that are safe for the chemically injured. Then our ability to socialize, shop and be involved in community events are all restored. Also, when our health has an opportunity to recover, an opportunity to return to gainful employment is created, especially if we are able to be employed in this low-toxicity village. To successfully accomplish this, the village must be located in an outside low-toxicity environment that has a government-legislated protective buffer zone. This protective zone would need to include a ban on all pesticide usage and on all pollution-generating industry near the village.
Since the chemically injured person’s reactions are in fact toxic reactions, the doctors to whom we are referred should be clinical toxicologists. Clinical toxicology is an underdeveloped medical field, and it urgently needs to be brought up to date with modern times. Instead of being only in poison control centres that focus only on single incidence acute poisonings, the clinical toxicologist needs to learn to recognize, diagnose and treat those of us that have been poisoned gradually by a wide variety of poison mixtures.
Also, there needs to be a development of various specialties within the clinical toxicology medical field, such as: neurotoxicology, immunotoxicology, hepatoxicology, pediatric toxicology and so on. This would be best accomplished by building a Clinical Toxicology Hospital/Research Centre, which draws together the expertise from the global leading researchers in this field. This hospital would be accomplishing many things: meeting the health care needs of the chemically injured, grant the opportunity for controlled, double blind research studies, and be an avenue to teach the medical community about chemical injury in a way that they will accept, respect and follow.
Then ideally, this Clinical Toxicology Hospital/Research Centre could be built in the safe, low-toxicity village that has been created for the chemically injured. By bringing together the leading researchers world wide, some research hurdles could be jumped more rapidly. The existence of the low-toxicity village would create an open door to do control research studies comparing different groups of the chemically injured. This Clinical Toxicology Hospital/Research Centre could also be a teaching hospital, that teaches and trains the rest of the health care professionals – in Ontario, Canada, and the rest of the world.
Sorry this is so long. Please let me know your thoughts, Flora Preston
Thank you Flora! I’ve read so much on this topic and it’s unfortunate that your invaluable and advanced understanding is buried. You should try to have your understandings published. It’s a contribution.
Keep writing your marvellous posts, you’ve expressed in a nutshell what I, being somewhat muddle headed cannot!
I can’t even think straight I have been sick since Nov. I got antibiotics and I felt better, I think that was an infection combined with my MCS I felt brity good for 2 weeks than I got sick again. I was using the neti pot because I thought it was a sinus infection like the first one but I could breathe through my nose most of the time, both times. I had to talk the Dr.at the clinic into another antibiotic, she did not want to give it to me,it to me. I felt better again and I could eat and my appetite came back. I just finished the last one and got sick again but this time it started to get better I did not go to the clinic that was last week now i Feel sick again it seems to be on and off. This morning it’s back again. I had a blood test Jan 9th and got the results that evening. RBC HI 5.36 vit B12 high 1476, ferritin 326, sodium LO 130,total protein HIGH 85. I asked the Dr. at the clinic to have it done. My own Dr. wants me to take it again in two weeks. My cleaning products are all chemical free. I was fine last year from april to Nov. I only seem to get it in the cold months so far. I don’t know what to do, sometimes tylenol helps a little.
Hi Margaret,
I had constant sinus infections for years no antibiotics seemed working.
I use the netipot but I mix my own salt and baking soda since I do not trust companies first of all it is cheaper and clean no additives at all I use himalayan pink salt make sure it is clean no additives and baking soda mix it one on one also somebody mentioned grapefruit seed extract since I was desperate tried it and it worked this is my first year without sinus issues.
I put 3 droops of the extract in each rinse. Also sauna and detox baths help too . But be careful with essential oils I am reacting to them too. I also used to steam over boiled chamomile tea since it is anti inflammatory.
Every time I get exposed to something as soon I get home I do a rinse to get rid of the particles.
I wont take anymore antibiotics if I can avoid it instead you need to make your immune system stronger. Also lots of food items ,spices can trigger sinus issues .
Hope it helps
I have been suffering with MCS for three years since a boarder rented a my basement for 8 mos. I have never seen anyone so addicted to chemicals – febreeze, candles, bleach, medical-grade-anti-hiv wipes, etc, perfume and body spray. She even used body spray on her car’s interior. I literally suffocated in my own house from a 24-7 bombardment of this. My eyes would burn and I would be dizzy, have nose bleeds etc. I begged her to refrain and she wouldn’t – and she was a health practitioner.
When I asked her to leave, she took her time; it was pure torture. Two of my beloved dogs died within 15 mos. of each other, one without warning and the other from nasal cancer. I still hope she wasn’t the cause but it’s hard to deny the buildup of fumes wasn’t poisoning them. It’s too tragic to think about.
My MCS is only getting worse. A co-worker who was informed of my sickness, wore a gallon of after-shave which set off my symptoms into overdrive a few weeks ago. I haven’t recovered. I’m in hyper-sensitive mode x 2, and can detect all kinds of smells at work. I have not asked for a no-scent policy but have put a sign on my office door. I have asked them to equip my office with an air purifier also. If it gets worse, I will have to ask for no-scent. As far as I am concerned, the Human Rights Tribunal will take it very seriously if an employer were not to take all measures to accommodate an employee’s disability. Employers hate the HRC.
As for right now, I am foggy, dizzy and feel like a blood vessel in my head is going to explode. It’s hard to concentrate. Hopefully I will come back down to my “normal sensitivity”. But to do that would take 1-2 weeks of 0-exposure. Not possible in Toronto. At this rate, if it keeps getting worse, I feel one way or the other, it will kill me .
Make sure you get a charcoal filter friend.
My children and myself contracted this illness after residing in a highly toxic home (unknowingly) for one year. An extremely fraudulant real estate transaction, undisclosed so many harmful defects, that we ran for our lives, once the reports were gathered. It was too late, we are now ill with many symptoms, most debilitating is the brain damage. Inability to focus, memory loss, zero concentration, auditory processing disorder, vision problems, agitation, anxiety, panic, depression, fibromyalgia, muscle pain and weakness, twitching, tremors, seizures, shortness of breath, multiple chemical sensitivity, rash, low immune, and more. We have sought treatment for almost 2 years, including environmental specialists, with no luck for a correct diagnosis. Which I needed for my disability pay after being forced off my good job of 11 years, that supported my 4 children well. I was therefore cut off of disability due to the lack of diagnosis, in addition to my son being hospitalized after a wrong diagnosis of him. Suicidal and put in lock down for 9 days, which in turn then children services were called in and I was under investigation for 40 days to have him removed from my care. I, needless to say am here to confirm that this illness is absolutely,… a HUMAN RIGHTS ISSUE, and I wish to be a voice, “FOR CHANGE”. We, in addition to all these travesties, also became homeless numerous times, since leaving the toxic home. Where can we turn for help, as I am now forced to apply for CPP and do not know what requirements they will need to obtain a correct diagnosis. ???
yes, a hellish existence of isolation and marginalization, loss of credibility and respect. most people are so cruel about it.
Hello:
My wife suddenly developed a severe fragrance sensitvity about 5 years ago and was prescribed an epi pen to carry st all times. She herself never wore perfumes or makeup.
It ended up costing her job as she would suddenly have to leave work feeling sick dizzyand short of breath. There was no fragrance free zone at the time but about a year after her dismissal one was created.
She applied for jobs with several companies but none were fragrance free and retail was out because consumers wear many types of perfumes and colognes.
She cannot get on to an elevator in case a person wearing perfumes or cologne are to get on.
Her dismissal has cost us about $350,000 in wages that she would have earned. She is now 61.
This is a terrible condition and should be covered in disability benefits by the Canadian government.
I have mcs, allergy vs mold, ass intolerance, massive chronic sinusitis, extrem weakness, asthma and much more.
After 4 years fights against doctors, psychiatrists, goverment, courts its over. Here in germany all these sicknessess doesnt exist! its a little flu, not more.
I have been imprisoned and tortured because they said these symptoms are unbelievable and such sickness doesnt exist.
Four years ago I was part of a SaR (Search and Rescue) Team, now I am totally helpless, no doctors, lawyer, human rights organisations, nobody who helps and rescues me.
After 3 years, i was able to get help in the medical corps of the geman army. They made many tests and diagnosted all these disabilities. But its too late. The only option is total avoidance. It worked fine, after two days most of my symptoms stopped. But its not possible here in germany over a long time.
If anyone can help me to get out of here, to leave the country, get asylum in canada, to live in the wilderness, pls help.
I need nothing, only a lonesome place to live. I cannot fight without any chance anymore.
Its so easy to stop this, but since four years I am forced to stay and to destroy my health und provoke sickness and asthma and desease. If anyone is willing to help me, even its a hint, a name or an adress, do it.
I lost my family, my friends, my existence, my health, my human dignity, everything.
I dont want social help, medical care, nothing, only a place where i can live without torture, pain, weakness, helplessness.
I am not able to fight, claim, process, hope anymore.
I believe that stress is the one thing that triggers it. I became extremely sensitive to perfume (and eventually all related products) because of a stressful situation at the time I was exposed to it. Perfume is petroleum based and therefore my problem is with gas, oil, exhaust systems, etc., etc. I have had lung cancer because of it. I now am extremely sensitive to chemicals in food and that is my real problem today. I have since been diagnosed with Lichen Simplex Chronicus because of consuming chemicals. This is a cycle of itching and scratching and I have had it for 10 and a half years. The only way to stop the cycle is a steroid cream, which does work but you can only use it for 2 weeks and then the itch comes back. The world is now full of chemicals, whether you breath them or consume them and is destroying people.
“I believe that stress is the one thing that triggers it.”
Based on what? Please don’t make such proclamations about the rest of us based on your beliefs about your own experience.
Thank your for the article… And the comments… WE ARE NOT ALONE. As for Eva’s comment, well, yes, I think it can be part of the soup. BECAUSE, stress can be chemical, biological (like mould, parasites,…), bacterial, viral, physical (like an assault or an injury – to head or cervical – after a car crash, for instance), and-or psychological-emotional. We all go through soooo much stress (ALL forms of it, chemicals being a MAJOR ONE!) in this era and in this world. It accumulates. SOME people who have FM and-or CFS and MCS went through a trauma (PTSD) that involved 2 or more of these major triggers, and ended up with the conditions. It is MY case. Like many young professionals, I had a burn out at the end of 2016 (pushing too hard studying + working + training + loss of a loved one then 2nd cancer of another loved one), couldn’t sleep, and was given a mild dose of SSRI (always been a “green girl”, never taken any pills in my whole life before), …After only a few months, I began reacting REALLY badly to it, to the point that I had to stop it quickly (July 2017) and BAM: the adverse reaction to the drug + the withdrawal NIGHTMARE got me falling into HELL (light dystonia at the same time of the day, everyday, for 2 months, whole body burning, muscles twisting and twitching, electric shock in the head, insomnia and vivid nightmares, menses for 2 months and many other unnameable horrors). Shock to my whole system… No doctor believed me… But it was REAL! It really felt like my brain had had an major (chemical) accident. Some sort of TBI. Prior to the ‘accident’, I had also discovered that my whole apartment was a “mould hole” (major leak and contaminated bathroom – biological trigger!). And after the “accident”, BANG: 2 episodes of very painful shingles occurred to me in less than 4 months (viral trigger!). Through my ordeal, I received almost no emotional support, quite the opposite sometimes (even hostility), from my surrounding, then a very close relative died of cancer, so it was all really traumatic (psycho-emotional trigger). And after the “storm”, it seems that my “brain, CNS and whole body” remained stucked into this state, and I was diagnosed with severe FM… I traveled abroad in February 2018 to get some medical help,… to no avail… but I was unlucky and got bad parasites (2nd biological trigger!), and was exposed to lots of extreme heat + smoke, diesel exhaust, and chlorine (2nd chemical triggers), and began reacting to them. When I came back from this trip (don’t even know how I could travel AND come back alive), my MCS had gotten REAL. I started to react BADLY to paints, car exhaust, perfumes, you name it. And my fatigue and pain got worse. That was in July, 2018. Only 1 year after stopping the SSRI. Just like that. Because of the initial “trauma” caused by a tiny chemical pill, I went from part time working and studying, hiking, swimming, dancing, gardening, etc. to bedridden, in incredible pain and stupor, all in a downward cascade of less than 3 months! But I rose from my bed, and fought. And fought. And fought. But only got worse over less than 2 years now… I went living to the country side this past November, didn’t get better with my FM-CFS, but being less exposed to chemicals, of course, breathing is easier than in the city (I needed an oxygen mask in the end). However, the isolation is terrible. Can’t work (was a teacher). Can’t study. Can’t drive. Can’t do much. Can only care for myself, my dog, and the house, and do “tiny tiny bits” of the things I loved and that defined me (walk in nature, garden, spend time with people, soooo few around…). So hard, right? My doc, a very good man, really, only thinks I have general anxiety – if only, ha ha ha! (in regards to FM + MCS). I gave up last year, and very very calmly said to him: “ok doc, whatever you say, I’ll try to relax”. Yes doc: I almost faint if I go into a freshly painted house, I can’t stop coughing and I get heavy vertigo if I smell the exhaust of a snow remover, a garbage truck then a school bus, I can’t think straight if I pass by the laundry section in the supermarket… Yes doc: that is only anxiety, LOL! The things that keep me alive, pushing through immense (burning) pain, exhaustion and reactions, on a day to day basis? Well, it may sound contrived, but those are gently walking with my beloved dog in the sunlight or under the stars in the woods and marvelling at the beauty I see (and feeling my heart pounding so hard and my lungs searching for air so much, but, hey! I’m still alive!), love and hope that comes from praying and meditating, some deep breathing, visualizations, laughing yoga + any type of laughing (funny videos, or movies) at least 30 minutes per day, listening to inspiring or uplifting music and making a few steps smiling (I used to be a tireless dancer!), watch beautiful movies, or documentaries about nature, acceptance, gratitude, not “giving into fear” when “slapped” with a chemical challenge but rather keep on breathing through it (if tolerable, of course) and focus on my dog’s cheerfulness (if he’s around), or think about (picture) something nice or funny. I know, it sounds ridiculous, but even if my body reacts, it removes the distress out of it… And, also, “letting go” (but not surrendering). And lately, I began volunteering from home for a MCS organization in my region. Anyways, again, even if my FM + CFS are worse than before, my MCS is more or less stable. I have small to medium challenges, but I meet them, face to face, and I do my “tricks”… At least, I don’t live in fear, and I feel empowered a tiny little bit. Love to all… PS: many told me I should’ve sueded the pharma company for what it did to me… but, really, could I win? No energy (nor money) to put in a fight already lost. Better put that energy into “squeezing joy” out of anything around me and healing… or the thought and hope of it, at least…
Respectfully, Eva could it have possibly have been the chemicals that triggered you and the stress that just made things worse? Just a thought. Was it diagnosed that stress was the trigger to your chemical sensitivities not the substances themselves? Stress as trigger is something I would find very hard to accept if I were ever told this. Totally agree with what you say at the end though!
I’m one of those 70℅ that quit my job. Now I live with a very small pension. I went to specialists over many months, thanks to a gp that actually listens. I did not try to get compensation because I knew it wouldn’t go anywhere.
Thank You for the great work. I am a sufferer of MCS and most of the time society say its in your head. (When I am exposed to these chemicals my body has many muscular spasms.) Most medical doctors have little knowledge of or no significant training in the field. It can be very debilitating to the mind body and soul, not only affecting the specific individual but also their work colleagues and family. I would like to know if there are any self help groups or conferences that I could attend. I reside in Etobicoke. I would also like to become more involved in lobbying for air quality standards.
Hi Joe,
I’m in the west end of Toronto as well. Sorry to hear of your pain. Have you seen any doctors that deal with chemical Sensitivities in the Toronto area or GTA? I need a doctor and don’t know where to go. If you can help with any info I would appreciate it. Thank you and take care.
Hello AJ
In toronto a call to Women’s College Hospital will get you a M.D. that deals in environmental illness, it will take time but they will explain process to you Good luck
Dave
I have had workplace related MCS and MEFM for more than 25 years, caused by toxic molds and chemicals. Through access to information, I obtained about 500 pages of Material Safety Data Sheets (MSDS) listing chemicals used in my workplace. Over 100 were proved to be carcinogenic, mutagenic, or teratogenic. Stated health exposure effects indicated involvement of multiple body systems; brain and central nervous system; respiratory system;muscle-skeletal system, genitourinary system, etc.
Symptoms listed showed a strong correlation with multi systemic symptoms I had experienced. These included irritated eyes, blurred vision, tearing; chronic low grade fever; chronic sore throat, bronchitis and sudden onset asthma; extreme shortness of breath; skin rashes; chapped lips; nosebleeds and runny nose; swollen joints, pain and stiffness; fatigue; migraine like headaches; inability to concentrate; disabling fatigue and lack of energy, etc.
The 1998 Consensus Definition of MCS confirmed such multiple body system involvement. Yet to my knowledge no medical college in Canada teaches its students to recognize the significance of these symptoms clusters as indicators of environmental chemical reactions.
These symptoms are common among people with MCS, and overlap with some symptoms of ME/FM.
Such symptoms do not fit the criteria for any known psychiatric disorder.
But the apparent link between these symptoms and the “human health effects” listed on Material Data Sheets (MSDS) for pesticides, fertilizers, building products, etc., as well as those in my workplace, should provide medical researchers with reliable data; and valid support for the 1998 consensus criteria.
Most people trust the chemical industry. For instance,those working in industry or agriculture are aware that petrochemical products are dangerous because they come with Material Safety Data Sheets (MSDS.) listing hazardous chemicals and their health effect; and how to avoid accidents or exposures.
But few are aware of health hazards related to the multi-billion dollar commercial/household cleaning products and personal products industry which uses the same petrochemicals or their derivatives in its products. Why?
It is because, due to patent regulations, manufacturers of “scented” products are not required to list hazardous chemicals used in their “fragrances” or “perfumes” and do not require MSDS.
Thanks to this loophole, product label information leads the public and medical profession to assume such products are safe. The use of home and personal care products which may contain dangerous allergens and sensitizers is increasing worldwide, and year by year.
Information regarding dangers of home and and personal products is readily available; yet the medical profession has consistently failed to learn, recognize, or acknowledge human health effects of petrochemical pollution.
It is not ethical to continue to claim that only 2 to 3% of the population has MCS, ME/FM when medical colleges and doctors are proven to mis-diagnose or deny the existence of these diseases. Who provided this statistic? What criteria was used to determine this 2 or 3%?
Like most patients with MCS, ME/FM, I have seen many doctors. Psychiatric disorder was ruled out by a leading psychiatrist. Despite this diagnosis, and observable chronic, disabling physical symptoms, several disability company and worker’s compensation doctors (with no psychiatric training) diagnosed vague symptoms and psychological disorder. All worker’s compensation decisions reviewed proved this was a standard medical response to conditions such as mine. These unqualified diagnoses were the basis for denying claims for the majority of claimants and appellants.
Thus, medical ignorance and bias adds to the misery of patients, and protects the chemical industry and employers.
We live in a chemically polluted world. Petrochemicals fill our homes; our waterways, and increasingly our food. Recent concerns regarding micro-fibres in water and food confirm this.
A brief google search will provide a list chemicals used in scented products. Another brief search for MSDS of each chemical will provide information proving correlation between “health effect” symptoms listed and those reported by MCS patients.
It is high time researchers and the medical profession did this small bit of research.
Thanks for reading this.
If you research even a short list of petrochemicals used in scented products ,you will find a strong correlation between MSDS symptoms and MCS, ME/FM symptoms.
Thank you for reading this.
Thank you for your thoughtful comments. I don’t understand why people aren’t as alarmed at the amount and intensity of chemical use in our lives. If a ‘spray’ is toxic enough to kill insects, for example, then in larger amounts/repeated exposures, what do they think it does to humans? Because people don’t have a short term reaction to a chemical they lose all sight of any long term impacts. Drives me crazy!
I am just beginning to piece together why so many things seem to make me sick/nauseous. After teaching for 20 years, I have recently branched out to try something new, figuring that what ailed me is all of the associated stress and anxiety that comes with teaching. I’m beginning to wonder if a potentially mouldy building and other exposures were also at play. I’ve recently started a new career in a new work environment and shortly after noticed a strong chemical odour that intermittently assaults my senses. Most recently a new coworker started and she reeks of scented products. I immediately told her of my sensitivities and again 2 days later. She seemed like she was going to try and make some changes, which she has but I still find that her scent takes my breath away. By the following week I had to go home almost as soon as I arrived because I couldn’t think properly and was feeling nauseous. At that point, I was much more direct in exactly how i was feeling…hardly a way that I wanted to start off a new work relationship. My immediate manager wasn’t being proactive so after a couple of weeks I notified the director (of the ‘health’ clinic where I work) and so some changes were made. Unfortunately, they are not enough and I am concerned that if things keep getting progressively worse as it is now affecting my brain function, I am worried about my long term work prospects. I applied to work there because i want to work with a team but I’m afraid that this issue is going to mean that I work alone or not at all. If I request further accommodations then I might be placed somewhere in isolation. It’s not my ideal but I am going to ask if I can work from home and report to the office only as needed. I’m afraid to ask in case the answer is ‘no’.
Anyway, I’m also in Canada (Ontario) and all of my coworkers are quite nice but ironically (i work in a health clinic!) this issue is not taken seriously enough. I never set out to be the gatekeeper of all things ‘scented’.
I hate feeling like I’m the problem and in this scenario I am outnumbered. Like I read somewhere else, you can legislate scent-free policies in the workplace but you can’t legislate people to behave considerately. I guess that does make me the problem.
Canadian policy is purposely ableist. It is true that the government is basically saying we aren’t worth the trouble so we’re the problem but please know, that is not true. Everyone exposed to these chemicals gets sick eventually, it just takes longer for some people it seems. Maybe it will change in time and maybe it won’t but know that you aren’t the problem, society and the system is. Please don’t internalize ableism just because the majority would benefit from it. Put yourself first. You deserve to live and work in a safe and accessible environment. We all do.
I, too, have suffered for years with MCS, CFS, and Fibro. I’m sure there are many diseases/illnesses that are as bad or worse to live with, but I doubt there are many that are also so alienating, so misunderstood, so unsupported, and with so little medical resources available. This illness destroys all areas of your life. It robs you physically, financially, socially, emotionally, and strips you of even being respected as a mentally stable person, regardless of your life and accomplishments prior to becoming ill. The medical community, when puzzled by your illness, more often than not, will question your sanity before questioning their limited knowledge.
Even protections which most can rely on, like SSDI, medical services and job accommodations are too often outside reach. You can’t get SSDI without strong, proven medical support which for people like me is outside of reach due to no specialists in my area. Even as an employee for the State of Kentucky, my request for job accommodation was treated like a joke. I was given a reduction of hours as I requested, then told I must perform the same amount of work As I did when working full time. I was written up and given warnings while working without pay in an attempt to hold on to my only source of income.
At this point, I’m in public housing which is now keeping me constantly exposed to my neighbor’s candles, deodorizers, plug-ins, sprays, etc. It’s like dying a slow death and having nowhere to turn. I had hoped to see a change for us all within my lifetime. At this point, I’ve become jaded and just work to accept the fate before me. I’ve spent 20 years now trying to rise above this illness. At this point, I’m tired, so tired.
I have been suffering from MCs since I was gassed in the Air Force in 1956 I lost 45 lbs very soon after the exposure and have not regained it I am tired all the time can’t sleep serious digestion problems my quality of life is very low
Wow! I just now came across these blogs and as sad as it is, I feel some comfort in knowing I am not the only person struggling each day with MCS. I work in an office environment where we have a Fragrance Free Policy but our new boss refuses to enforce this as she herself wears essential oils with a fragrance. I am finding there are so many people using scented detergents and fabric softeners. These scents stay on their clothing for weeks. I will continue to read any new responses as I am currently gathering any information available.
Thank you so much, and even more for being one of the first articles to mention psychological issues but to not blame them for the condition. I would add to the list that even if you have a specialist you still have such a hard time seeing them if you had to move to a rural forest like me. I write this as I am literally sitting here in the shed trying to test out a sleeping bag’s cold resistance since it’s so mild today. Why? Because I might need to use to camp out or sleep in the car when my husband drives me down to the city to see my specialist in April because I can’t stay in a hotel full of chemicals. We did last year, it was torture despite the masks because as you mentioned, most people also have ME. Yes, my health improved right away in the country side but the minute I step into a shop (ironically the worse offenders are pharmacies), I’m back to full MCS. Again thanks this encouraged me to keep trying to find a place so I can have access to my specialist.
Hello Claudia
I have been seeking a specialist in ontario for mcs can you give me a idea where you are state or province
David
I’m struggling in Ontario to find knowledgeable specialist/diagnostician for EI/MCS clusters of signs and symptoms. Help? Such a reality?
Passive aggressive rant begins: I’m comfortable with physicians that supplement using interpretations that some smells set off anxiety, as I am assured from experience that being poisoned and or experiencing respiratory distress, that involve my sensory organs, is quite frightening, triggers stress and possibly add more stress panicking about symptoms worsening as any allergy sufferer knows. Perhaps that’s how allergists can understand IEI/EI/MCS, if at all. I find it tragic and hard to accept intelligent medical professionals find some sort of resolution in considering this condition as mostly/solely psychopathological and treating such challenges mostly/solely intrapsychically; the fog of illness. I suggest there is a simplicity in differentiating IEI/EI/MCS from somatoform/conversion disorders, though it may take some actually patient care. What is served to deny toxic/physiological causation? As a commenter above notes even more clearly, “It is iatrogenic to label such cases psychogenic.” ADVOCACY.
catch 22. MCS is recognized as a Disability. You need a doctor to support all Disability applications. Doctors won’t label MCS because there is no objective data. Meanwhile the challenge to cope gets harder and harder. New products are being created that increase the exposure. Hand sanitizer kills me. EvERYONE uses it. I am reading my story over and over in the comments of others. How can so many of us have the same experiences without having met? I tell doctor after Doctor- each exposure creates stronger reactions with less amounts. I get offered anxiety medication. The brain fog, hives, muscle weakness and breathing challenges must be all in my head.
We need help NOW not a year from now which is how long it takes to get to Women’s College Hospital.
I have suffered from MCS for all my life. My parents never understood the high fevers, vomiting, aweful headaches to the point of hallucinations at the point of age 4. This got worst as I grew. I’ve been tested for lupus, blood diseases and whatever else the doctors thought might be affecting me.
Just the smell of my mom cooking certain foods will make me vomit, fever and spend the rest of the day or two in the worst pain.
I am 52 years old now and I’m still coping with this very crippling condition and no one can help. Not even to diagnose me. I feel abandoned.
It is in fact a human rights issue for those of you who want it to be recognized as one. The fact that MCS is classified as a disability actually just solidifies that.
The issue is making a complaint to the human rights commission. That is a whole other process and it needs to be specific.
Is there any studies for MCS? I have been suffering from MCS for 20 + years. I have worked for 45 years in the Sarnia Chemical Valley. I have also develop CLL in the last 2 years. Can you recommend a doctor that will diagnose me with MCS?
Hello Jack
I was diagnosed by environmental clinic at women’s college hospital it is a time consuming process to get in but they do a thorough medical check before they accept you, my Dr. was Kathleen Kerr but she may be retired now
I was excited to think they would cure me but they preach the avoidance rule and the idea of not having a lot of chemical load on the body at one time good luck, hope you get help
I agree with the later piece of this article. It is true that this should be a human rights issue. Do we not have the right to be able to breathe properly. It is true you will not win a workers compensation claim and I know this because I did put one in because I was affected at work by a smell and ended up in the emergency department and was given benadryl to open up my airway. This issue desperately does need research. We need to keep companies that are using chemicals that are killing us to be accountable. Cognitive Behavioral Therapy may work for OCD, Anxiety but I can tell you it will never work for people with MCS. I am frustrated and angry about this whole situation that nobody seems to care about us who suffer everyday.
I would like to have MCS recognized as a illness and a disability. I have had symptoms since 2003. I was diagnosed at the ICCS in Fall River in 2005 as having MCS. In May 2009 I could no longer work as a janitor because of the cleaning chemicals. In May 2017 I lost for the final time after eight years with workers’ compensation and the tribunal. I still don’t understand why I never saw a doctor from the compensation board. We lose our health, jobs, medical benefits, support from our families and friends, savings and our self worth.
It’s almost a Human Rights Issue. This disability is unrecognized, unfunded and ridiculed by most people sufferers come in contact with. Is our legal framework not a reflection of the values we hold dear as a nation? Doctors, the Ontario Health Care System, including many other public-funded organization and the Human Rights Tribunals have no enforceable means to police policies designed to accommodate environmental sensitivities. There is no means to punish anyone who sometimes, purposely or not harms others when using fragrance or chemical products. The accommodations that MCS sufferers require needs to have checks and balances and a way to enforce a scent-free environment. What happens when an employer knows what is required but does not enforce it? The very carefully crafted wording in accommodating someone makes zero reference to enforcing any breaches to scent-free environment as to have accommodations being “non-existent”. Because an establishment has been designed “scent-free” means that scented products are allowed on premises by employees, visitors and clients alike. No one is punished if employers fails to enforce a scent-free environment necessary for everyone to thrive at work. Even though criminal charges can be brought to someone threatening or using violence, using scents that knowingly makes someone ill is tolerated. If tolerating breaches in policy is acceptable, it is therefore encouraged. MCS may or may not be recognized at the Human Rights Tribunals because breaches in policy are tolerated. Healthcare can do better. Governments can do better. We fund these establishments that sink us yet we cannot access assisted suicide when we can no longer tolerate to live such marginal lives. Catch 22 comes to mind.
p.s. Because VOC’s that make us ill are not proteins, they are not recognized as true allergens. Allergists cannot help us.
Wow. I had no idea that there are so many others suffering from this. I knew about 15 years ago that I was beginning to react to various products. But when I researched it then, there was not much support. I made personal changes sicj as switching all of my hygiene and cleaning products to less toxic options. I also did an elimination diet and discovered that I am gluten and dairy intolerant. Despite being allergy tested for these and those not showing an allergy, I knew from my elimination experiment that I felt mich better not eating these foods. Despite being a health promoter and having Dietitian friends saying I shouldn’t restrict these foods, I ignored them because I noticed a significant improvement. Chemicals products still affected me but changing my eating habits really helped. So at that time I mamagwd to simply cope by learning who to avoid sitting next to at staff meetings etc. Then in 2015 my workplace built a new building, went to an open concept with no enforcement of a (ridiculous) scent-reduced policy (it should be scent-free, not reduced…but when I first started there, there wasn’t any policy so I thought it was better than nothing….until I got worse). In 2016 I got worse. I am now in a major fight with my employer trying to get an accommodation. They are refusing to do so. Dealing with the worsening of my symptoms is bad enough….to now also fight for an accommodation is so angering and draining. I am not even 40 yrs old yet. My families financial plan is based on two incomes until at least our mid fifties to early sixties. If I don’t successfully get accommodation at my work, my family’s financial status is going to change significantly. This MCS stuff is real! And it sucks….it really does rob you of your life. To avoid being in chronic pain I can’t gp shopping, to the movies, to a play, on public transit or even a walk around my block if someone is doing laundry with scented detergent and/or fabric softener. My family can’t even visit because they don’t even fully understand how sensitive I have become…I don’t know if I will be able to forgive my sister of accusing me of having obsessive compulsive disorder. This MCS stuff truely sucks. If I had cancer I would be getting so much sympathy and support….but not of uou hace MCS….peopel just think you are crazy. I am glad that I am not alone and hope that us sufferers can work together more to advocate for those like us. It is only a matter of time….I am certain that there will be many more people affected to the point that the government and medical community will no longer be able to ignore us.
I hear you JJM.
You have pretty well described my own experience. Living with MCS is a struggle. I am 68 now and have been struggling with MCS for about 20 years. Recently I have become even more sensitive to scents and chemicals.
I am just recently viewing it differently though from my own perspective. I am not damaged or broken. I am a unique, creative, loving, kind, intelligent person who happens to be also extremely sensitive to the toxins that we live with.
We are the canaries alerting the world that the health and wellbeing of all people is endangered. But so far our response is limited to a whisper for many reasons which have already been mentioned.
We are all heroes on this journey. Definitely warriors.
I am beyond thrilled to have discovered this discussion today, I have written down many links to follow up for further research. Thankyou to everyone from the bottom of my heart
Re healthcare accessibility, I don’t see why professionals like doctors, nurses, phlebotomists, EMTs (and even less-essential healthcare providers like dentists & physiotherapists) can’t be made safe for MCS sufferers (and others with pollution sensitivities, like those with asthma or migraines) with a few changes that would benefit the health of all the staff & patients, like a fragrance free policy, and the use of low-VOC construction and cleaning products. Who WANTS fumey carpet or paint? Who needs to wear stinky hand lotion at work? There’s really no good reason we allow healthcare settings to be so polluted.
I was exposed to second hand smoke for many years and developed CIRS? I believe it is CIRS. I don’t have money to see a functional doctor. However, I did find two doctors who treat CIRS. How do I receive money for treatment for this?
Multiple Chemical Sensitivities is real. It is not a figment of sufferer’s imagination. That said, because the cause is not understood medically, because reactions appear to be of a psychosomatic nature, many people who find themselves suffering to whatever degree from this disorder, are easily dismissed by the medical profession. I use the word disorder, because in attending the first health conference in Ottawa attended by physicians, Dr. Leznoff, allergist, environmental doctors, Dr. Josef Crop, those involved in the periphery of this unusual disorder, what to call ‘it’ was a focus of the conference. Should it be called a disease or a disorder. I refer to it as a disorder because the body and mind become disordered when it is reacting to chemical exposures. One might consider researching the work of Helke Ferrie, who has done considerable writing on this disorder. I worked with textiles for years, cotton/polyester cloth to be specific. Teaching quilting for ten years, I stood above a hot steam iron pressing this type of cloth. Several years into teaching three classes a week, for ten months of the year, I found myself trembling or shaking by the end of my classes. My inclination was to walk in the fresh air after my classes, which seemed to alleviate the trembling. I gradually began to have reactions to drugs, to barium swallowed for digestive issues, which were more of an anaphylactic in nature. In 1985, under an anaesthetic for emergency surgery, my body went into a serious reaction, my blood pressure and heart rate increased to over two hundred. Placed in intensive care, beta blockers were used and helped me stabilize but from that moment onward, I suffered from what I eventually came to understand was MCS. It is real, it is not a figment of the sufferers imagination, it is a long and discouraging road to a diagnosis and the inference that it is all in the sufferers head is both right and wrong. Simply put, to me, my exposures affect the oxygen levels in my body, when this is compromised, I have brain fog, I have muscular reactions, my heart rate can increase. My reaction is to get away from whatever appears to cause this and into fresh air. I have moved from Toronto the countryside north of Toronto, my reaction to petrochemicals is automatic. Polyester fibres are made from petroleum products. Inhaling the chemicals from textiles or cloth, does affect the respiratory systems of those exposed. Cloth is one big chemical bath from beginning to end. Women work mostly with cloth, although some men do as well, but it is the women, who in seeing doctors about this mysterious disorder who are often told, it’s all in your head. Well, to a degree it is, the oxygen levels are affected making thought processes disordered. In the end, it’s better not to discuss this disorder other than to say, I’m reactive to chemicals, I’m reactive to medical intervention, I react directly to adrenalin and then just keep quiet. I’m tired of being looked upon as neurotic. All I will say to doctors is, if you don’t understand this disorder, admit it. I understand that. I don’t understand why it is but I understand the nature of it.
Sandra Proudfoot
Hello Sandra
I read your story with great interest as I have been fighting mcs for almost 20 years and it seems each time I think I am recovering a small exposure sets me back and now after a heart attack and stent procedure it seems the mcs has taken over
The things like sense of smell and constant dizziness from exposures have doubled and I worry that they are becoming quite chronic
I was diagnosed at women’s college environmental clinic but our health system only allows 3 visits !!! What can they do for such a complex disease in 3 visits??
Best of luck Dave
I personally am not interested in trying to convince anyone that Environmental Sensitives is a “real” disability. Any professional person who is not capable of finding this information for themselves would cause me to seriously wonder how capable they are as well as how seriously they really care about this information.
Do you know how to google?
The urls to the following perspectives are from the Human Rights Commission and I would have thought that logic and common sense would dictate that as one of the first places to look also.
The Medical Perspective on Environmental Sensitivities
About the Publication
Are you an employer or service provider? Do you understand, from a medical perspective, why you need to accommodate individuals with environmental sensitivities? Do you know what policies or guidelines you should implement to ensure your environment is safe for all? This report summarizes scientific information about environmental sensitivities and addresses issues such as recognition by medical authorities, education and training, impact of environmental sensitivities in the workplace, and guidelines for accommodation
http://www.chrc-ccdp.gc.ca/eng/content/medical-perspective-environmental-sensitivities
Accommodation for Environmental Sensitivities: Legal Perspective
About the Publication
Are you an employer or service provider? Do you know your legal obligations to accommodate individuals with environmental sensitivities? What are the best methods to resolve conflicts about accommodating environmental sensitivities? This report examines these issues from both a legal and a human rights perspective. It provides seven recommendations to help you deal with environmental sensitivities
http://www.chrc-ccdp.gc.ca/eng/content/accommodation-environmental-sensitivities-legal-perspective
As for those who think they have Multiple Chemical Sensitivities, you can email me for all sorts of information at surpriseshan2@aol.com . Information on treatments and alternative products that are just as effective but without chemicals, as well as what MCS Is and is not. However I suggest that those who wrote this article do “due diligence”.
Dave if you honestly need or want to know more about MCS, I suggest that you go to the Yahoo health groups and join one or more. Great sources of info — the info in this articles is badly out of date and incorrect.
I have CIRS how can I connect with you?
Hello Sandra,
I am in Toronto as well. Do you know of some doctors that addresss Chemical Sensitivity here? I am in search of one or some and have just googled and care upon these comments. I don’t know where to look. Any direction or names would be of great help. I hope being north of the city has given you some respite. Any help would be greatly appreciated. Thank you and take care.
Hi A.J. Did you get info re the Women’s College Hospital “Environmental Heatlth Clinic” in Toronto?
Yes MCS (multiple Chemical sensitivities) is real!!!!!!
I was working in a unventilated Toronto building (still being finished) as a office building, containing many chemicals that were spread around the air being sprayed onto walls & floors, and after six months I contracted a myriad of symptoms that as a formerly very healthy man previously, never ever presented before in my life.
That was in 1992, and now I still have these long time symptoms of MCS!!!!!
Even though I carefully remain away from chemicals now, – so the immune system was found in elaborate US testing underwent a major damaging change, that my immune system now attacks my body and nervous system every time a brief exposure to perfumes, and other chemicals occurs.
Even now Germany and Russia also recognise MCS.
Sadly most of the Doctors never learned of the toxicity of chemicals during medical training, so we all suffer as Dr’s just throw their towel in when we all ask for help.
The very best you can do is go to a Toxicologist ( I went to US) and get a tissue sample examined for a chemical toxicity panel test as the chemicals stay in adipose tissue (fat) for many years, as sadly again the chemicals disappear from the blood test they frequently do today inside two weeks, and you can’t prove your poisoning with a blood test.
Only with a chemical toxicity panel test on your tissue will confirm your health effects & damage is from chemical poisoning.
I have a file of 40 doctors and 120 reports from those specialists in USA,Canada, and other countries, all proving my chemical poisoning and nervous system and Immune system damages from the exposures that I was recognised at (WCB) – WCAT case after a very long seven year case in 1998.
Now it is 2017 and I am still a sufferer of true extreme chemical allergies mostly called MCS (multiple Chemical Sensitivities) or ( Environmental illness (EI).
My life has been ruined by this long lasting illness, that is also called Painters syndrome, or gulf war syndrome, or chemical poisoning.
Remember this saying, a chemical researcher in Florida once told me to always use;
“Dont smell it if doesn’t smell like fresh braked bread or roses, as it is going to be a poison to you.”
I would be happy to share my case with a study case or with anyone who is genuinely interested to prove this disease actually is real.
MCS sufferer for life.
Hi I read about your story and interested what doctors agreed to do you had the testing you mentioned? I also was diagnosed in 1992 when I lived in Florida and wonder where the doctors where located? Also wondered if you still live in Florida and if you have been able to connect with other MCS sufferers as it is soooo difficult to have relationshipsI I would love to help others avoid this illness! I can’t do much alone but I am praying God will use me to open peoples eyes before it is too late for them or their loved ones.
Thanks Dayna
K Crispin, I just came across your post. I am having a lot of difficulty finding a doctor in Canada who can address my exposure to elevated levels of VOC and formaldehyde. Would you be able to point me in the right direction as to who might be able to help?
Thank you,
C
I’ve had problems with skin sensitivity, and various advrese reactions, such as difficulty breathing or feeling very sick for many hours; and flu symptoms the most unpleasant for me being a very sore throat around the use of hairspray, anti bacterial wipes, washing up liquid, perfumes etc. My problems started after a bad reaction after using an all day suncream in 2010 which manifested as a rash (contact dermatitis???) that lasted 4 months and flu symptoms that fortunately only lasted a few days, the problems started slowly and have become much worse in the last couple of years. I even had to change from mainstream to specialised sanitary wear and have had reactions to toothpase and dental floss. I’ve have a pair of trainers which I wore perfectly happily then around the same time as I had the toothpaste reaction would make my whole body feel unpleasantly hot to wear. I’m even finding I have to keep my windows shut because I can react to things in the air such as smoke be it barbeque or other and scented products that are commonly in used. It’s very hard to adjust especially in the summer as I have been used to being able to keep windows open for the last 40odd years without any problems. Does anyone have any information please on the effectiveness of EPD(enzyme desensitisation treatment), neutralization treatment,Bioresonnance Therapy or any treatment that has a chance of improving my quality of life, which at the moment is pretty low. There is currently nowhere in Wales that I can access treatment specifically designed for MCS which I have been told that I have. I’ve recently been told by a Consultant Immunologist that, MCS is not recognised as a medical condition by WHO; that the problems I have are being triggered by association with previous unpleasant experiences and was unable to offer any insight or management. Has anyone who has MCS gone on to be diagnosed with a neurological condition; if so was it linked back to having MCS? I’m wondering if I am lucky and do not have true MCS and just react badly to a half dozen maybe or so substances that are in common use whether singly and or in combination. I’m worst around anything fragranced but I have had coughing fits when in rooms where I can’t smell anything out of the ordinary, so I fail to see the argument that I’m reacting out of fear of what may happen because I happen to smell something unusual or unpleasant and yes I do consider many fragranced prodcuts to be overpoweringly unpleasant and bearing little resemblance to the naturally occurring things like roses or vanilla or honey that they are supposed to smell like. (and yes I do appreciate that there are many people unfortunate enough to be allergic to the afore mentioned natural things.) I have also noticed that my reactions are much worse when products are heated, I had a problems breathing when a family member used a strong washing up liquid to clean our cooker hood filter. The liquid happened to be apple fragranced. The smell of apples now makes me feel sick, but does not affect me in any other way and I continue to eat and enjoy the taste and drink apple juice. In my opinion this is one example that MCS is not triggered by association with previous unpleasant experience. My own thoughts are that MCS is 100% physical and should be treated equally with known and accepted allergies albeit through different methods. Recognition of this condition as physical, and effective treatments are needed urgently in the NHS if we are not to become a nation the chronically ill. I beleive that MCS is recognised as a part of ME but to the best of my knowledge there are no effective treatments for this part of ME.The few clinics in the UK that offer treatment for MCS are all in England or Scotland – none in Wales!! I find the very idea of treating MCS with CBT very insulting, possibly even harmful – having to attend at least some sessions in an environment that may wholly unsuitable for the sufferer, group CBT sessions etc. Ask yourself, would a consult a physician who would treat a bone fracture by sending a patient to a psychologist?????. Bone fractures do get missed on X-RAY occasionally but that does not make the pain and problems arising from the fracture mental. I am lucky enough to have seen some excellent consultants along the way and have gained some small measure of relief, an excellent gp surgery, and the support of family and friends but even so it is impossible to completely remove all triggers from my home envirmonment or outside. Visitors will sometimes call unexpectedly who don’t know and in all innocence use perfumed products even the few visitors we have, have to work, use everday things such as washing powder that they don’t even smell and pick up air fresheners and perfumes etc from daily interaction but can cause problems of varying severity in me if they happen to contain things that trigger a bad reaction in me. I’m not entirely sure of everything I react to and people don’t have a list of substances that they use pinned to them! Why should MCS sufferers be restricted by location and financial status when it comes to acceptance of a condition and treatment. Clean air is a human right, not a privilege. I’m sure that everyone is familiar with the Clean Air Act passed in this country in 1956, I believe, chiefly as a response to the Great Smog of London 1952. It appears to me that the human race has just found another way to cause pollution to the environment and harm to ourselves. Will we never learn? Please let me know of any petitions I can sign in relation to MCS issues. It’s good to know that there are others that suffer, and will speak up about MCS.
I also live in Florida and suffer with MCS for 10 years now. I got this way from mold exposure in my home. The house was filled with mold in the attic and was “remediated “. The mold kept coming back in different areas. I’ve since moved. Can anyone help me with a Dr in South Florida who understands this is real?
Carol visit survivingmold.com Dr. Shoemaker has information on there regarding mold illness, as well you may email for a request for doctors in your area in America.
Good luck hope this was helpful to you!
In May 2017 I lost for the fifth and final time to the Workers’ Compensation Board. It went on for eight years before the Tribunal (one person) decided against my claim for compensation. I was told by the Workers Advisory Lawyer that neither WCB or the Tribunal don’t recognize MCS. I was a janitor for 25 years and I became very sensitive to the cleaning products that I was using at my work. In 2005 I was diagnosed with MCS at the ICCS in Fall River in Nova Scotia. I had to leave my job in 2009 due to this illness. When it comes right down to the it, a person loses their income, medical coverage, family and more importantly their health. MCS makes it hard to live because you have to be aware of your surroundings all the time. Thank you for all you do.
Iccs at fall river did not help you? That has been my last hope plan, could you say more about any treatment they offered you. Was your 5ime there a complete waste of scarce energy?
Sorry Sandy I just read this today April 24th. I am going back to ICCS again this year. The staff are very professional. You will be treated with respect and they will listen. Each case is different. Call for an appointment 1-902-860-0057.
Genetic studies of people with MCS show key SNPs involved. They are not specific to the condition but any intelligent physician can see from these that this person must be physiologically unwell. To think that the illness is psychogenic is malpractice or at very least not evidence based medicine. Medicine has developed a very very bad habit of psychologizing when clear singular markers are not available. It is iatrogenic to label such cases psychogenic. The damage done by this inexcusable act must be avoided but habits, medical habits are indeed strong and hard to break.
do you have any studies on this I need concrete support and would love to access anything you might have in written format.
OMG please help me! I’m suffering so much because I am multiple chemical sensitive with severe fibromyalgia and it feels like I’m being poisoned! Help!
Do you got any help , please let me now I feel I am dying every day a bit & no one understand not even my family I have FM , chronic fatigue syndrome , MCS , allergies + sensitivity’s to food etc .. I have it for 30 years the last 3 years I become ill .. feel I’m dying slowly and is not much I can do about my depression is extreme and I try for 2 yeas get help from a professional, soon I tell them I cannot be around perfume or much scents they cancel I need help & I can’t not get it .. No one cares is not much help in Canada or where I leave.. I just hope you got help before you feel much worse
I suffer from MCS in Saskatchewan and work for the Health Region. I cannot find trained medical personnel to help me. I am once again jumping through hoops to try to stay employed with the Health Region. WCB and Disability insist on medical but without a doctor who understands MCS it is a constant cyclical problem.
I am a health care provider having worked in hospitals for nearly 40 years. Unfortunately I react to cleaning products used at my place of work. These reactions then evolved to include some scented products as well. WCB in Nova Scotia does not recognise MCS as a diagnosis but I understand some provinces do. Is Saskatchewan one of them do you know?
Ontario does. I live there worked as an RN until I can not go into any clinical area anymore due to chemicals and the best one is the hand sanitizer. My MCS is backed up with medical (seen multiple specialists Allergist, Dermatologist and Immunologist) and a nice Airborne Allergic Contact Dermatitis lasting for 6 months on my upper body. Everybody told me that I am losing it when I stated that something what I breath in at work makes me sick, well it turned out that I am not that crazy .
So now I am working in an office until the hospital finds a place for me to work in within the restrictions of the specialists. My advise is to everyone not to give it up times are changing .
Symptoms wise constant detoxification helps a lot: Epsom salt baths, sauna, hot yoga , dandelion and milk thistle tea, for nasal symptoms sinus rinse to flush out the allergen particles.
Hi Sharon, I live on the border of AB/SK. I’ve had MCS for 10+ years, and now have Crohn’s disease as well. Please let me know if you find any help in Canada!
I lived in Saskatoon until 2016 and was unable to visit my mother who lived in Unity Saskatchewan for 20 years without getting sick. Finally realized that it was oilfield pollution. I used to use a respirator to get off the prairies. The problem in BC is that everyone burns wood. My GP in Saskatoon told me to leave Canada 15 years ago.
I am now 66 and in good over all health but can’t go outside most days. The Canadian Medical Ass. says that 2.5% of Canadians are disabled by MCS and 30% are suffering to some degree but their members are not aware of this. This would make any DR. who makes a negative comment on MCS guilty of practicing outside the bounds of their competency.
I had to leave Saskatoon because of the pollution and my Dr. told me to leave Canada as we don’t care about air quality. When I talked to the minister of health’s office all they seemed interested in was who the Dr. was who said that. Western saskatchewan is a really tough place for MCS. Oil fields.
Charcoal Filtration for our homes is the best help. Can be inexpensive. I am looking at buying a 4 plex 45 min. out of Nelson BC and installing fully filtered air to each unit. producing most of our own food. Fruit, veggies (green house)meat chickens,eggs and grass fed raw dairy). No industry in the area, above the wood smoke.
I work in Alberta.I was diagnosed with MCS in 2010 however had increasing reactions to chemicals since 2001. I do not wake up every day going what will I need to avoid today rather still find I get blindsided when I do react, why because it is not scent based for me. I find my oxygen levels plumet when exposed, the latest round I went to work with a 98% oxygen and after exposure my partner notices I was not sure footed and asked me to check my level..it was 88%. I have remained away from that environment and am back at 98% as I do not use chemicals in my own life and when out and about simple ask them not to be used around me, work declares they are within Industry Standard.
Only environmental doctor deals in this disabling condition
Interesting
There are chemicals in our water that are worsening the symptoms of MCS, and first among them is fluoride. Fluoride also causes or worsens the symptoms of arthritis, Crohn’s disease, fibromyalgia, eczema, etc. yet because it gets into our food through both water and fluoridated pesticides, not to mention dental products and medicines, essentially every American consumes it daily…… See http://www.greenmedinfo.com/blog/science-and-alternative-facts-about-fluoridation-false-dilemmas-and-fake-news
Healthy Debate has actually covered fluoride before. You can read our story here: http://healthydebate.ca/2015/07/topic/evidence-for-fluoridated-water
I have currently been having these symptoms and talked with my doctor about it. Along with what had always bothered me in the past and how my body reacted.
It has become overwhelming now and has made it very difficult for me.
I have to watch what triggers my symptoms and keep track of them now.
Found out in all this. That my cousin has been battling with MCS.
So here I am researching and looking for help with all this.
This MCS is not fun at all!!!!!
This article is highly biassed, error-filled and dated. I’m surprised that such supposedly skilled & experienced staff writers would stoop to such slapdash methods.
1) When there’s an official government body in the story, you give the full official name — and its mandate. At the very least, a token quote from the Chair. But, here — the reader gets nothing. We see the word “panel” and, later, “taskforce” in the comments — clearly, none of the writers bothered to check. A rookie move.
2) Some of the basic medical jargon is wrong. MCS is a condition — not “a disorder” which was used in this article, a term that is overused in the mental health field. The word “disorder” signals the subtext for the entire article: MCS patients are crazy. Why else would the ONLY treatment option discussed be anti-anxiety drugs? Not-so-subtle bias.
3) With the focus on allergists and their narrow perspective, the bias becomes more obvious. MCS can have a constellation of symptons — NONE of which is uncontrolled sneezing or runny nose and eyes, the core signal for an allergic reaction. Uncontrolled coughing, yes; sneezing, no. Only in those patients who ALSO have conventional allergies. The S in MCS is for sensitivity, because it’s not allergy. Which begs the question, then, who decided that allergy would be the thrust of the article? Wrong-headed from the outset.
4) More bias shows in the way the writers cherry-picked through current research to find a psychological “review” from 10 years ago. Biassed and out of date.
One cause of multiple chemical sensitivities is the liver’s losing its detoxifying function–and this is due to overexposure to scented products and wood smoke. Either chronic exposure or short term intense exposures are the culprits that can cause the immune system to malfunction.
It is essential for public schools to restrict fragrance use, because chemical sensitivities, asthma and other environment-based disabilities such as autism are skyrocketing.
See Facebook page, “Go Fragrance Free” for more information.
Absolutely!
Lack of adequate coverage makes it difficult for people to get the health care they need and, when they do get care, burdens them with large medical bills. Current policy efforts focus on the provision of insurance coverage as the principal means of ensuring access to health care among the general population. Other factors, described below, may be equally important to removing barriers to access and utilization of services.
All I can say is that I have FM and MCS and a handful of autoimmune syndromes. When you are disabled by a migraine like headache and can’t function with vomiting all you can do is curl up in a ball waiting in the ER for half a day for treatment, I know it isn’t in my head or can be cured with therapy. I work hard and succeed in spite of my disability and because it is invisible suffer stigma from others that think it is in my head or I am a malingerer. If either of those were true I wouldn’t have put myself through university 3 times.
Just clicking on the links here and noticed that the research cited is out of date, unrepresentative and limited. Instead, check out
Chronic, Complex Conditions: Academic and Clinical Perspectives, John Molot, MD, FRCFP, 2013. This document presents current thinking by physicians and researchers, and recommendations for clinical services.
at http://recognitioninclusionandequity.org/resources/
I really welcome this article, and its encouragement of healthy debate on the broad but incredibly neglected issue of MCS. Many thanks to the authors.
Unfortunately, the historic failure of allergy and immunology to understand and develop treatment modalities to assist patients with MCS has been a big part of the problem, especially here in Canada. Dr. Leznoff’s reference to ‘orthodox, evidence based medicine’ may have right with respect to ‘orthodoxy’ but not to ‘evidence based.’ That discussion will need a longer space than is available here.
In the United States, a significant number of allergists have added more effective approaches to their practices by becoming expert in the field of environmental medicine, about which more can be learned from the American Academy of Environmental Medicine http://aaemonline.org/. Denial of real disorders and refusal to expand knowledge has left hundreds of thousands of Canadians and their families without help.
To see the types of diagnostic and treatment modalities that are available south of the border, and that should be made available here, visit a clinic that has helped 40,000 patients over many years (including me, 9/11 first responders, Exxon Valdes and Deepwater Horizon victims and many others): http://ehcd.com/
The same attitude of denial also sustains the general use (and the non-regulation) of many toxic ‘everyday chemicals’ that are harming everyone’s health in serious ways over time. There is a huge literature on this subject by now, but those not yet familiar with this reality can certainly get a good start by visiting http://www.healthyenvironmentforkids.ca/resources/EE-andCD-scoping-review.
We need to develop strong public health standards for chemicals in daily use – from building materials to baby toys, from furniture to cosmetics – that protect everyone’s health. This will create a much safer environment for those with MCS too, reducing their disability by improving air quality and creating safe spaces for all. And we need to modernize the practice of medicine here, not retrench and look backwards.
As far as CBT is concerned, MCS refers to symptoms – but not to cause or severity. In case of low toxicity, absence of pernicious infections and other biophysicial problems, some form of ‘amygdala retraining’ may be helpful. And it should be provided where it can help. But it cannot – and does not – resolve MCS when other important biophysical factors are part of the clinical picture. So it cannot responsibly be advanced as a cure for all, or even most, people with MCS.
Varda Burstyn
I like and agree everything you wrote. My god you took the words out of my mouth. thank you for the links.
I think you should start a a webpage of your own. you could be our spokesperson in Canada. Toronto even.
wow. I am speechless. thank you thank you. thank you
The existing “Taskforce ” on MCS, fibromyalgia and chronic fatigue is flawed. The Canadian society of allergy &clinical Immunology has sent letters about this “taskforce” If a new panel will be considering MCS, I am willing to serve on the panel.I am considered (by orthodox,evidence based medicine) to be expert in “MCS”
Arthur Leznoff MD, FRCP(C)
I have MCS. I saw Dr. Leznoff as a patient many years ago when I was trying to sort out the reasons or sources of why my body overreacted to chemical pollution. With all due respect, Dr. Leznoff is/was an allergist. MCS is not about allergies although we appear to have allergic reactions. It is about sensitivities towards chemicals and our reactions to them. An allergist is not the person to serve on a panel for MCS. It is not black and white, it is a very confusing medical issue which is not clearly understood by the medical profession because there is no one medical test which can define whether you have this or not. MCS is not black and white. But it is also not something an allergist would have something to contribute to and I would hope that someone with a background in chemistry might become involved in and how chemicals can and do affect the immune system of humans. S. Proudfoot, Ont., Canada
Yes, an extremely important distinction to be made. I go thru this all the time. Sensitivities and allergies are not the same thing. i also think the entire allergies paradigm is flawed in itself.
Well said. Only a person with MCS, who has experienced allergies, would be able to make that distinction.
The canadian human rights commission does consider mcs a disability…
wow This is so amazing as I have been dealing with Severe MCS since 2012. It happened at work and it was Horrific! Your right It happened all of a sudden. I was told it was psycho symptomatic! It happened in 3 days first day couldn’t think, dizzy fatigue, 2 day it was same symptoms but more pronounced, and 3rd day was worse, My voice went along with the other symptoms. I could no longer work as my employer couldn’t guarantee my safety. It is so disabling My life has changed. It was not recognized as a disability back in 2012. I totally agree it is not an allergy it is a Sensitivity! I had an allergist that wore cologne 6 hours before my visit. I had a reaction to it. I went back to him and let him know what my speech therapist said as she talked to Her colleagues In Toronto. I have had allergic reactions to medications. Anti depressions do not work on patient with MCS. Oh My yes we are going to panic and anxiety as I feel I am going to fall, I can’t breath, If you can’t Breath wouldn’t you panic!!!?? I had a great doctor in Toronto from the environmental Hospital.
I have mcs
Not even worthy of a reply.
I have cognitive impairment because of chemical poisoning
Please send me your knowledge on how to desensitize chemical sensitivity by diet and retraining the brain and Neurological system. Avoidance is not the answer. I have been suffering for many years. I also see the connection to anxiety and panic attacks. I have been trying to understand it for years
Thanks
“Brain retraining” only serves to enforce the psychosomatic dogma. If you’re afraid of exposures to the point where you have anxiety and panic attacks, it’s fine to use CBT or other psychological therapies to help (and that includes the so-called “brain retraining” programs), but that is NOT a physiological treatment for the physiological aspects of the disease.
Exactly.
I have been recently diagnosed with MCS. Was also diagnosed with anxiety around 23 yrs old.. now 65 and seem to be intolerant of many environments. My question… did going to a dry heat spa help you release toxins? Thank you
Do you have MCS? Allergists say it’s not a true allergy because VOC’s are not protein.
Although many are impacted to similar degrees as Asthma, there are no drugs to relieve symptoms. If there was enough support and research there may be an end to doctors thinking MCS is psychological illness and maybe start the healing process. The isolation that attitudes cause is the greatest part of this disease. People don’t identify with living without fragrance so they are the problem, not them. Why do they identify bees dying a symptom of chemical intolerance and they don’t for humans? Human rights legislation has a lot of work to do if sufferers are to get the support they need. There is a lot of haters out there simply because they don’t appear to be like them.
Dr. Leznoff does not have the credentials or empathy to have an opinion on MCS He is a bias know it all and supports getting WSIB claims denied!!!!!!!!!! How does he sleep at night knowing people are suffering with the illness caused by the workplace because he is too stubborn and set in his ways to get educated and catch up on the newfound evidence provided by real professionals and accepted by government resources!!!!! Look at his current education and you won’t find anything new!! Paid to destroy lives you should be ashamed to exist.
Thank you
I have suffered with MCD, FIBRo and chronic fatigue for over 17yrs.
Dr Alison Bested had diagnosed me back in 2001 at women’s college hospital, environmental clinic.
I’m tires of educating ignorant individuals I focus on just getting thru a day rather then convince someone. We’ve move away from toronto and live in Tiny, ontario.
Dr. Leznoff is no expert. 20 yrs ago he put me in a roo. Sprayed perfume and told me it was all in my head.
Talk about PTSD now.
Dr. Leznoff would not be a good representative of MCS patients.