WHAT IS ENVIRONMENTAL ILLNESS/MULTIPLE CHEMICAL SENSITIVITY (EI/MCS)?
Environmental Illness/Multiple Chemical Sensitivity (EI/MCS), also sometimes known by the terms Environmental Illness (EI), Multiple Chemical Sensitivity (MCS), Chemical Sensitivity (CS),Environmental Sensitivity, Toxic Encephalopathy, Toxicant- Induced Loss of Tolerance (TILT), Idiopathic Environmental Intolerance (IEI), is a complex, multi-system illness where sufferers are made sick by exposures to low levels of many common chemicals and other environmental triggers.
Many of these chemicals can make ANYONE sick at high dose exposure. However, chemically sensitive people can become EXTREMELY ill after exposures to even MINUTE amounts of these substances. Reactions can occur after chemicals are inhaled, ingested, or absorbed through the skin. Chemically sensitive people also frequently become reactive to other substances and common everyday items too, for example … foods, medications and supplements, mould spores and particulate matter, light, sound, electrical appliances and electromagnetic fields found in appliances, mobile phones and wireless technology.
The Environmental Protection Agency (EPA) definition is as follows-
“Multiple Chemical Sensitivity is a diagnostic label for people who suffer multi-system illnesses as a result of contact with, or proximity to, a variety of airborne agents and other substances.”
EI/MCS is a very serious condition which, along with potentially extreme and disabling symptoms, can also have a catastrophic and devastating impact on every area of the sufferer’s life.
WHAT THINGS MAKE PEOPLE WITH EI/MCS SICK?
Each person affected by EI/MCS may be sensitive to different substances and the level of hypersensitivity may vary considerably.
The most common substances that people with EI/MCS become disabled by include, but are not limited to … fragrances (the word ‘fragrance’ in a list of ingredients can contain up to 300 individual chemicals), scented products and candles, personal care products like hairspray and deodorant, pesticides, herbicides, fungicides, mothballs, bug sprays and flea bombs, second hand smoke, wood smoke, gas heaters and stoves, ink from newspapers/books/magazines etc, adhesives, plastics, formaldehyde, building materials & interior fittings like fresh paint, new carpets etc, dry-cleaned clothing, aerosols, tap water, cleaning products, washing detergents, dryer sheets, petroleum products, outdoor pollutants and particulate matter, types of wood, fabrics, clothing and bedding, preservatives and additives in food, ‘natural’ chemicals found in foods & essential oils etc.
Electrical triggers can include … internal wall wiring, appliances, TV, cordless telephones, mobile phones, computers, Wifi technology and lighting.
Environmental Doctor & Researcher, Dr Martin Pall states that …
“The exquisite sensitivity of many MCS people is most clearly seen through their reported sensitivity to perfumes. MCS people report becoming ill when a person wearing perfumes walks by or when they are seated several seats away from someone wearing perfume. Clearly the perfume wearer is exposed to a much higher dose than is the MCS person and yet the perfume wearer reports no obvious illness. This strongly suggests that MCS people must be at least 100 times more sensitive than are normal individuals and perhaps a 1000 or more times more sensitive.”
WHAT ARE THE SYMPTOMS?
The symptoms and severity of EI/MCS are diverse and unique to each person. Ranging from mild … someone may feel a bit of a headache around perfume or nauseous around petrol fumes … to seriously disabling & life threatening. Symptoms include, but are not limited to … respiratory problems, airway irritation, asthma, rhinitis, rashes, headache, fatigue, muscle weakness, anaphylactic reactions, feeling ‘groggy’/hungover/poisoned, nausea, vomiting, diarrhoea, dizziness, numbness, tremors, seizures, irregular heartbeat, joint and muscle pain. Neurological symptoms may also arise, as well as anxiety, depression and emotional outbursts. Symptoms may occur immediately after an exposure or be delayed by hours or days. Reactions may last from a few minutes to hours or even weeks or months.
HOW DO YOU GET IT?
Many people who develop Environmental Illness/Multiple Chemical Sensitivity, were once healthy individuals who tolerated chemicals and other everyday environmental factors like everyone else, until, they had an exposure from which they did not recover.
Most EI/MCS sufferers can trace the beginning of their condition to a particular time in their life, often a single, high level exposure. For example, some people develop EI/MCS after moving into a newly constructed or renovated house, having new carpets & furniture installed in their workplace where the ‘offgassing’ of organic solvents from materials is high (sometimes called ‘Sick Building Syndrome’), or after having their home sprayed with pesticides for termites, rodents or flees. (Namely organophosphates or carbamates.) Exposure to toxic mould and mycotoxins is also a common trigger as well as viral and bacterial infections & tick borne infections like Lyme disease can also be a contributing factor. However, there are small percentage who become ill slowly over a period of years, seemingly as a result of the cumulative exposures of everyday life.
Some sufferers may also have a genetic predisposition affecting enzyme function, detoxification pathways and/or xenobiotic metabolism making them more susceptible to developing EI/MCS.
Even some “Environmental events (exposures) themselves can dramatically impact gene activity,” explains reproductive endocrinologist, Frederick vom Saal of the University of Missouri-Columbia.
In the 1980’s, 225 workers became sick after the renovation (including the installation of 27,000 feet of new carpet) of the EPA’s headquarters in Washington, D.C.. Although most workers recovered, 19 developed severe MCS and became disabled over the long term.
Co-Author of textbook, ‘Chemical Exposures: Low Levels and High Stakes’, Dr Claudia Miller and her colleague, Dr Howard Mitzel, surveyed individuals who had become permanently ill after an exposure to organophosphate pesticides, and after extensive remodelling in the home or office. Dr Miller noted at the time of the group’s pesticide exposure, 26 of the 37 individuals were working full time. By the time of the survey (an average of about eight years after exposure), only two of the pesticide affected individuals were able to work full time. They reported that their illness had affected every aspect of their lives.
EI/MCS occurs in people of all ages, races, and economic backgrounds. Some occupations which involve chemical exposure, may pose a higher risk such as … agricultural workers and farmers, Gulf War veterans, pest controllers, office workers(sick building syndrome), solvent -exposed workers.
Dr Miller notes “new-onset intolerances and multisystem symptoms have shown up in sheep dippers in rural areas of Europe (sheep dip is an organophosphate pesticide), homeowners in Germany exposed to a toxic wood preservative, individuals breathing fumes from massive oil spills, radiology workers in New Zealand who inhaled chemicals while developing films, and individuals living or working in newly remodelled buildings.”
Dr William Rea of The Environmental Health Centre Dallas, notes a more recent rise in diagnoses with women exposed to home cleaning products and personal care products etc.
Besides chemical injury resulting in loss of tolerance or dysfunctional xenobiotic metabolism, some other theories to explain why certain people develop EI/MCS are Immunological Dysregulation, Respiratory Disorder/Neurogenic Inflammation, Methylation Dystunction, Limbic Kindling/Neural Sensitisation and NMDA Receptor Activity/elevated Nitric Oxide & Peroxynitrite.
THE SPREADING PHENOMENON
Multiple Chemical Sensitivity usually begins with a reaction to one or two kinds of chemicals or foods, but can then spread to many other triggers. The sufferer begins to lose tolerance to more and more of chemicals common in everyday life. This disturbing phenomenon is called ‘spreading’. The severity of reactions can fluctuate depending upon conditions inside and outside the body, total body toxic load or general health of the sufferer.
HOW IS IT DIAGNOSED?
Multiple Chemical Sensitivities (MCS) was first identified in the 1950’s by Dr Theron Randolf, an allergist and Professor at the University of Chicago, and in 1989, a published consensus defined clear diagnostic criteria for the condition as follows –
- A chronic condition.
- Symptoms recur reproducibly.
- Symptoms recur in response to low levels of chemical exposure.
- Symptoms occur when exposed to multiple unrelated chemicals.
- Symptoms improve or resolve when trigger chemicals are removed.
- Multiple organ systems are affected
Despite this, many cases of EI/MCS still go undiagnosed or misdiagnosed, sometimes for years or decades. It is very common for sufferers to have sought help from multiple physicians without any outcome. Many sufferers also report feeling ‘cast off’ as mentally ill, told they are imagining their symptoms or even labelled as a hypochondriac.
Currently there are NO clinical guidelines for medical practitioners to provide appropriate care for EI/MCS individuals AND, perhaps even more frustrating for sufferers, despite the existence of several dedicated Environmental Medicine Physicians and Clinics around the world and many countries’ official recognition of the illness, many doctors & health professionals are ignorant as to its proficiency and potentially devastating life impact and/or continue to deny its very existence.
Some countries still will not recognise Environmental Illness/Multiple Chemical Sensitivity as an official condition.
Some conventional tests and functional pathology which may assist medical investigation, diagnosis and treatment include – Immunological & inflammatory Cytokine Panel, Hepatic Detoxification Profile, Mitochondrial Function/ATP Study, Fat Biopsy, Kelmer Test, Gene Study, Methylation Function, DNA Adducts, Translocator Protein Studies, Blood Antioxidant & Nutrients levels, Fatty Acid Analysis, Stool Analysis, Hair Analysis, Organic Acids Urine Test, Food Allergy/Intollerance Tests, Viral & Bacterial Panels and more.
Although some EI/MCS patients suffer from traditional allergies & an allergic response to some environmental triggers, EI/MCS is not primarily characterised by the formation of IgE, but rather by cellular inflammation and impaired detoxification of “toxic” substances, such as solvents, petrochemicals, and volatile organic compounds (VOC’s) found in fragrances, air fresheners, cleaning chemicals, and pesticides which may lead to an elevated total body burden of toxic chemicals.
Dr. Claudia Miller developed a questionnaire ‘QESSI’ (Quick Environmental Exposure & Sensitivity Inventory) to help identify health problems that may be associated with chemical exposure, that is suitable for patients and physicians.
HOW DO YOU TREAT IT? CAN YOU GET BETTER?
There is no universal treatment protocol for EI/MCS. Some sufferers can reduce symptom severity and improve their quality of life with time and effective management. Some go on to recover completely. Unfortunately, a large percentage of people are stricken with symptoms indefinitely or continue to deteriorate further, experiencing greater & greater hypersensitivity. Mortality has been reported.
The most important factor in recovery is to locate a health professional with some understanding in Environmental Medicine or clinical experience with chemical sensitivity. At the very least, someone who is supportive and willing to learn.
The most common treatments prescribed for MCS are:
- Chemical Avoidance
- Chemical Free Housing
- Nutrient Therapy
Chemical avoidance is the most effective treatment for MCS. This means eliminating all chemicals or possible environmental triggers which could cause negative reactions. Avoiding further exposures reduces the total body burden of chemicals in the tissues and hepatic detoxification pathways. Failing to do so could cause sensitization to additional chemicals which were previously tolerated.
Chemical Free Housing
A chemical free home environment is vital. Areas of concern include – newly built or renovated houses, problematic interior fittings, furnishings, carpets, bedding, plastics etc, mould, cleaning chemicals, room fragrance, indoor & outdoor pesticides, electrical wiring & wireless devices, water filtration, gas heating/cooking, wood-smoke and more.
Improved nutritional status can reduce symptom severity and assist the body to better cope with chemical exposure. Antioxidants and nutrients that support immune health & modulation, liver function and detoxification pathways are highly recommended.
Patients with MCS can often suffer from malabsorption and/or food allergies/intolerances therefore good nutrition is vital and rotating foods and even brands of supplements to avoid further sensitisation may be helpful. IV & injectable forms of vitamins may also assist.
As many EI/MCS patients have suffered chemical injury and/or have impaired/dysfunctional/slow detoxification pathways, therapeutic detoxification may prove beneficial.
There are numerous methods of detoxification. All should be approached with caution under supervision and tested for individual tolerance. For example – sauna & FIR Sauna, chelation, dry brushing & lymphatic massage, baths/foot baths, fasting, colonic irrigation, coffee enemas, oxygen therapy, IV infusions, homeopathic and herbal remedies or nutrient support.
Other treatments with anecdotal evidence include-
Limbic Retraining, Chinese medicine & accupunture/acupressure.
Provocation/Neutralisation, Enzyme Potentiated Desensitisation (EPD)/ Low Dose Neutralisation (LDN), Nambudripad’s Allergy Elimination Technique (NAET), BIOSET, Auto-Vaccine, Vibrational & Energy Medicine, Psychotherapy & Counselling among others.
Misdiagnosis or Improper treatment and management of EI/MCS is often the component responsible for illness progression, general worsening of symptoms, the possibility of experiencing the ‘Spreading Phenomenon’ and an overall diminishment in quality of life. Therefore, correct diagnosis, health care and education is VITAL!
People with mild to moderate chemical sensitivities may be able to make adjustments in their diet & lifestyle, home & work environment etc and remain productive and connected to the outside world.
However, at its worst, severe EI/MCS can be an incredibly disabling, and isolating disease that forces people to alter every aspect of their lives.
Due to the vast number of chemicals and environmental irritants found in today’s modern world, in personal care products, cosmetics and clothes, in room fragrances & pesticides, furnishings and building materials found in almost every residential and commercial space – someone living with severe EI/MCS may be forced to isolate themselves from the world. Many live alone, separated from people and unable to venture outside into public places. Shops, schools, workplaces, parks, public toilets, transport, churches, government buildings, all become impossible to negotiate. Despite potentially urgent healthcare needs – trips to the hospital, doctor surgery or dentist become a thing of the past. Many sufferers become prisoners in their own homes.
Due to horrible and disabling reactions to these everyday toxicants, rewarding careers and enjoyable social lives disappear along with community activities or even basic interaction with friends and family. Many severe sufferers are forced to forgo hugs, affection and human contact (because of chemical residues of fragrances etc on others) in order to survive. Many EI/MCS sufferers report feeling ostracised by family, friends and the greater community labelled as “weird”, “crazy”, “difficult”, “hyperchondriac”. Along with losing relationships, many people can no longer tolerate their favourite possessions either … books, photographs, clothing, furnishings etc Many more cannot tolerate light, sound or the television, computer or speaking on a telephone.
For some people their sensitivity is so severe that they are unable to tolerate even the slightest exposure to any chemicals, as a result of which they have to live in carefully controlled clean environments like a purpose built ‘Saferoom’. There are many more who cannot locate any housing that doesn’t make them sick … some are forced to sleep on bathroom floors without bedding, some in cars, some in tents far from civilisation, many people are permanently homeless.
Not only do people feel horribly ill day in day out, but all the normal activities and joys of life can be stripped away too. Anxiety, depression and suicide are understandable adjuncts to this condition.
Other compounding considerations to note include a recent Australian clinical review which reported that people expressing symptoms of EI/MCS to Medical Advisors had NOT had their concerns listened to, that their concerns had been rejected or had their symptoms disbelieved. Another survey of Australian Medical Practitioners in 2006 revealed NO effective intervention, diagnostics or treatments in regards to EI/MCS with NO evidence forwarded for ANY medications, dietary or supplement requirements or ANY OTHER specialized treatments, education or support.
The isolation imposed by chemical barriers in today’s modern world, coupled with the sheer volume and diversity of triggers and complexity of the illness itself, is a challenge most healthy people can never imagine. This coupled with the clear lack of understanding from most Health Care Practitioners, Government bodies and the greater community along with minimal research, education, support services and effective treatment strategies available to EI/MCS sufferers, can contribute to the overwhelming hopelessness experienced by many patients and the often devastating nature of this illness.
A PERSONAL NOTE: A WAY FORWARD
I know firsthand the devastation EI/MCS can inflict on one’s life. Despite my dedicated efforts for a diagnosis, intervention and treatment, I was misdiagnosed and wrongly treated for two decades and my disabling symptoms and cries for help repeatedly dismissed. I tried for so many years to find a reason for my physical suffering and mysterious unexplainable ‘sensitivities’. I sought counsel from ‘experts’ everywhere and was shown the door on occasions too many to count.
Many people did not believe me … some even said I was imagining it all. My spirit broken on many occasions, I am sometimes amazed I’m still standing.
As a result of incorrect diagnosis and mismanagement, my condition progressed and deteriorated to such a dire state I was forced into a single controlled room environment, stripped bare of my possessions, surviving on a handful of foods, speaking with the occasional visitor through a glass wall. Could this have been avoided? Yes. With the correct help, information & healthcare, my life wouldn’t have turned out this way. But, this is NOT the end of my story.
Alone, fighting an invisible illness with all the joys of life stripped away is unfortunately an existence many people experience every day. But it shouldn’t be that way. This must change. We must change. I am a part of that change, and I will do what I can to make that happen.
IT’S TIME FOR SOME CHANGES
- Official recognition for EI/MCS worldwide.
- Greater awareness & education for the community about EI/MCS and its impact on sufferers.
- Greater awareness & education of the dangers of the already large and growing number of potentially harmful and unnecessary chemicals found in products and everyday items in today’s modern world AND how to avoid them with strategies and resources for alternative products.
- Clinician education program at a tertiary level and in General Practice to ensure correct diagnosis & management.
- Clinical guidelines for medical practitioners to provide appropriate care and support for EI/MCS individuals.
- Universal EI/MCS policies for Hospital and healthcare facilities so that suffers can safely access basic healthcare.
- Purpose built/modified Environmental Medicine Units where EI/MCS sufferers can receive appropriate healthcare.
- Purpose-built public housing using low chemical and inert materials and located in low pollution areas providing emergency or long term housing for EI/MCS sufferers in need.
- Enforced equal rights via The Disability Act for EI/MCS sufferers to obtain safe access to healthcare, public spaces and buildings, safe housing.
- Further clinical research and investigation on the causes and biological mechanisms behind EI/MCS.
- Longitudinal studies with long term patients of the condition AND of course dedicated treatment studies.
Want to add some to my list? Please leave me a comment below – I’d love to hear from you!