Can healthcare do better for people with multiple chemical sensitivities?


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52 comments

  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

    • 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.

  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.

  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?

  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

  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?

  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.

  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.

  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.

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