Can healthcare do better for people with multiple chemical sensitivities?


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  1. Arthur Leznoff MD. FRCP(C)

    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)

    • Sandra Proudfoot

      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

      • Jenn Tsun

        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.

      • Suzanne

        Well said. Only a person with MCS, who has experienced allergies, would be able to make that distinction.

    • Sharon Williamson

      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

      • brainfan

        “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.

      • Bonnie Andrews

        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

    • Monique Robillard

      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.

  2. Varda Burstyn

    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.

    • kmn

      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

  3. Varda Burstyn

    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/

  4. Tina

    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.

  5. americanlamboard.com

    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.

  6. julie mellum

    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.

  7. HR Lightbown

    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.

  8. TINA

    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!!!!!

  9. KSpencer

    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

  10. Sharon Nordick

    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.

    • K Patten

      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?

      • Maya

        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.

    • Nancy

      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!

  11. Monique Hebert

    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!

    • Maria

      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

  12. Ian Hodgson PhD

    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.

  13. Douglas Burns

    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.

    • Sandy

      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?

      • Douglas Burns

        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.

  14. K Crispin.

    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.

    • DaynA

      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

    • Christine

      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

  15. Sandra Proudfoot

    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

    • Dave Mcivor

      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

      • Shan Russell

        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.

        • nina

          I have CIRS how can I connect with you?

    • A.J.

      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.

      • Judith Demers

        Hi A.J. Did you get info re the Women’s College Hospital “Environmental Heatlth Clinic” in Toronto?

  16. nina

    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?

  17. Katherine Mac

    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.

  18. JJM

    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.

  19. Monique Robillard

    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.

  20. Douglas Burns

    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.

  21. Barbara Leetch

    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.

  22. jack

    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?

    • Dave

      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

  23. K

    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.

  24. Roz

    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.

  25. Joyce Johnston

    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.

  26. Kyle

    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.

  27. Claudia

    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.

    • David Mcivor

      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

  28. Sandra

    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.

  29. Noella Savoie

    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

  30. Renee Lancaster

    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.

  31. A. McCallum

    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.

    • Tammy Moreau

      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.

  32. Joe Cosentino

    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.

    • AJ

      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.

      • David mcivor

        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

  33. Susanne Jensen

    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.

  34. Eva Giles

    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.

    • brainfan

      “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.

    • Mel

      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…

  35. Daniel Wedekind

    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.

  36. Ray Banks

    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.

  37. Jenn Tsun

    yes, a hellish existence of isolation and marginalization, loss of credibility and respect. most people are so cruel about it.

  38. Michele Davidson

    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. ???

  39. Suzanne

    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 .

  40. Margaret Wood

    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.

    • Maya

      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

  41. Flora Preston

    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

    • R

      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.

  42. kmn

    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.

  43. Rhonda Beatty

    Not, disabled at this point but by the time I hopefully can enjoy, my life won’t be able too!!

  44. Rhonda Beatty

    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.

  45. David Aubin

    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.

  46. R

    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.

  47. Cheryl Balcile

    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??

  48. Carole

    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.

  49. Sick O'Chemicals

    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.

  50. Rita sieme

    Ontario has safe housing for us, why is bc so slow in approving housing for us living here?

  51. Golly

    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?

  52. Judith Demers

    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.

    • Monique Robillard

      Have you called your oxygen supply company? Perhaps they could find something made out of ceramic? Or adapt a mask you can use.

  53. Monique Robillard

    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?

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