Statement From ARCH and CELA re MCS, ES, and the Ontario Task Force on Environmental Health

The ARCH Disability Law Centre and the Canadian Environmental Law Association (CELA) announced in September of 2016 that they were working on a report about the challenges faced by people with multiple chemical and/or environmental sensitivities.

ARCH Alert September 2016

“ARCH, in collaboration with the Canadian Environmental Law Association (CELA), has been working on a report about the challenges faced by people with multiple chemical and/or environmental sensitivities.  Our report was informed by consultations with persons who experience these disabilities. 

One of our major findings is the significant extent of attitudinal barriers faced by this group of people.  Often, they find that they are not believed when they ask that scents, fragrances or other products not be worn in the workplace, educational settings, health care settings or places where services are received.  We believe that a large awareness campaign is needed to educate the public about the impact of these disabilities on all aspects of a person’s life.”


The release of their report has been delayed because they want to respond to the Ontario Task Force on Environmental Health’s Interim Report, which came out just when their own report was intended for release.

In the November 2017 issue of Arch Alert, both ARCH and CELA  urge the Task Force to do more consultations with those of us who are living the experience:


ARCH Alert November 2017
(click on the image to enlarge)

They close with this statement: “We urge the Task Force to consult more broadly with individuals who live with MCES, as well as individuals who work with persons with this disability.  There are individuals who live with MCES on the Task Force, however, this disability affects individuals in such varied and unique ways, we believe further consultation is imperative, as the lived experience of persons with MCES is an important voice that needs to be heard.”


All true, and all good, and also necessary, as people with severe MCS/ES are always left out of discussions due to the accessibility barriers and poor health, and even for people with medium ‘sensitivities’, there are near zero efforts made in society to be accessible and inclusive, with few written fragrance or scent free policies being enforced anywhere, leaving people at risk of serious harm.


What ARCH and CELA seem to have missed, is  that the reason the Task Force was even created was due to the OCEEH  proposal that included a report which was based on interviews with the community, titled “Recognition, Inclusion and Equity: The Time is Now – Perspectives of People Living in Ontario with ES/MCS, ME/CFS and FM” (2013). Admittedly the report could have been better edited for easier reading, but nonetheless, it’s there, as are several other comprehensive reports.

Despite the real need to include the voices of more people with MCS/ES, across the spectrum of severities and wealth (poverty really can change the realities experienced) I really hope that ARCH and CELA don’t delay their report much longer, as we need all the pressure we can get on this government and other sectors of society as soon as possible, for them to act now, before more lives are lost. Many have been waiting since 1985 for action!


Varda Burstyn, one of the original members of the Task Force, as well as a founding member of the OCEEH proposal, has written an  analysis of the interim report and the recommendations released by the Task Force, which includes an important historical perspective:



She also assembled the recommendations from the 3 historical reports into one document, available here:

MCS RECOMMENDATIONS, ONTARIO, 2017, 2013, 1985. (pdf)


More info and the other documents mentioned above are available on Varda Burstyn’s new web page on the Ontario situation:


The full November 2017 issue of ARCH Alert is available here:



You may have noticed and perhaps even been confused by the different acronyms – MCS/ES, ES/MCS, and now MCES.

I started using MCS/ES back in 2007 when the Canadian Human Rights Commission released their reports and policy using the umbrella term of environmental sensitivities (ES).

As the community I’ve been a part of mostly self identifies as having MCS, and as most research done had used the term MCS, (some unscrupulous industry types also use MCS in disrespectful and erroneous ways), I felt it was important to use the two terms together to show there are legally enforceable rights as well as make it possible for people to find more info on the community and the research that used the MCS term.

ES, as an umbrella term, also includes EHS (people who are disabled by electromagnetic and/or wireless technology), and other disabling sensitivities too  (see the 2007 Medical Perspectives document from the CHRC for more).

The Ontario Human Rights Commission lists environmental sensitivities and chronic fatigue syndrome under Non-Evident Disabilities in Section 2.2. of their document Policy on ableism and discrimination based on disability, where they also mention multiple chemical sensitivities, chronic pain, asthma due to mould allergies, autism, and others specifically in different places in the document.

ES/MCS started to be used by some other groups, including the Environmental Health Clinic in Toronto after I had coined MCS/ES. Same thing, different order.
As MCS/ES rolls off my tongue much easier, I’ve stuck with using it.

Now, ARCH and CELA are using MCES, but I guess we’ll have to wait to see their report to learn why.

Anyway, long story short, things are happening, but we need more people to pressure the politicians to act now, by minimally adopting the Task Force recommendations a.s.a.p. (remind them that there’s an election coming up – there are many hundreds of thousands of us who could vote based on what they do or don’t do).

I know reports can be tedious reading for people with brain fog or short attention spans, but it’s also important to understand what is going on, and how important it is to act sooner rather than later, because future generations are also at stake here. The things that are harming and disabling us are also harming and causing chronic health problems in children.

This news, also from November 2017, should make everyone stop and think!

From CHEO — Children’s Hospital of Eastern Ontario

“some troubling mental health trends including:

– A 75 per cent increase in mental health visits to CHEO since 2010.

– 45 per cent of clients who use a local mental health walk-in clinic are under the age of six.

– One in four children in Ottawa are developmentally delayed before they start school.”

Campaign tackles effects of stress on kids as young as 6


NOTE: 24/7 exposure to toxic chemicals (like the neurotoxins, carcinogens, and endocrine disrupting chemicals in fragrances and many other indoor products and materials) plus 24/7 wireless radiation, plus GMO pesticide laden foods and food-like products might just be destroying human capacity for life… (but I’ll bet the pharmaceutical industry is really happy, as their profits are still going up)

We need to turn this around and act now!

Recognition and accommodations for people with MCS/ES will benefit all of society!


5 responses to “Statement From ARCH and CELA re MCS, ES, and the Ontario Task Force on Environmental Health

  1. What ARCH and CELA seem to have missed, is that the reason the Task Force was even created was due to the OCEEH proposal that included a report which was based on interviews with the community, titled “Recognition, Inclusion and Equity: The Time is Now – Perspectives of People Living in Ontario with ES/MCS, ME/CFS and FM” (2013). Admittedly the report could have been better edited for easier reading, but nonetheless, it’s there, as are several other comprehensive reports.

    Despite the real need to include the voices of more people with MCS/ES, across the spectrum of severities and wealth (poverty really can change the realities experienced) I really hope that ARCH and CELA don’t delay their report much longer, as we need all the pressure we can get on this government and other sectors of society as soon as possible, for them to act now, before more lives are lost. Many have been waiting since 1985 for action!”

    more waiting…without treatment or help…getting sicker….fighting back best Ican

    “If is difficult to get a man to understand something when his salary depends upon his not understanding it”
    as4.gif Upton Sinclair quotes (AKA: Upton Beall Sinclair, Jr. American Novelist and polemicist, 1878-1968)

    When a man finds a conclusion agreeable, he accepts it without argument, but when he finds it disagreeable, he will bring against it all the forces of logic and reason.’ Thucydides from 2,400 years ago.

    More recently a UK surgeon called Wilfred Trotter concluded much the same thing about our inability to accept new ideas.

    ‘The mind likes a strange idea as little as the body likes a strange protein and resists it with similar energy. It would not perhaps be too fanciful to say that a new idea is the most quickly acting antigen known to science.’ Wilfred Trotter 1941.

  2. In early December, the Ministry was asked on fb:
    “Hey Ministry of… Health,

    Are you making plans to implement the recommendations from the MOHLTC Task Force on Environmental Health’s interim report “Time for Leadership: Recognizing and Improving Care”, released in July 2017? You can find the link to your program on my profile picture description and download the PDF from your very own website if you have no idea what I’m on about…

    Or any plans for any of the other informed recommendations made to the ministry over the last 32 years regarding Environmental Sensitivities/Multiple Chemical Sensitivities (ES / MCS) and the healthcare of those who have this disability in Ontario?

    It’s getting a bit dire… and you’re falling down on the job on this, for the last few decades. So… just checkin’ in on what the plan is!

    Thanks, eh!”

    (a number of comments from different people ensued)

    The Ministry eventually (a few days later) responded to the original comment with:

    Ontario Ministry of Health and Long-Term Care:

    Hi ____, Dr. Eric Hoskins, Minister of Health and Long-Term Care, acknowledges the serious impact these conditions have on the lives of patients and their caregivers. While the minister-appointed Task Force on Environmental Health completes its work and final recommendations, the ministry is implementing several of the recommendations made in the Task Force on Environmental Health Phase I Report.

    For example, the ministry is renewing the funding for a fellowship in Clinical Environmental Health at the University of Toronto to expand clinical expertise in this domain. The province is also providing support for a group of experts to develop consensus on clinical case definitions for these conditions, a necessary first step towards developing clinical practice guidelines. Clinical case definitions and practice guidelines will help health care providers and their caregivers better diagnose and understand these conditions.

    We still have a lot of work to do to advance the health care experience for individuals living with environmental health conditions. We know that work of the task force will help to increase the understanding of these conditions and provide our government with the information we need to improve access to care.

    • To which I responded with:

      Quote from George M. Thomson, B.A., LL.B., LL.M. (in 2001)
      who chaired the extensive report by the Ad Hoc Committee on Environmental Hypersensitivity Disorders for the Province of Ontario in 1985:

      “More than fifteen years ago, I chaired a committee on environmental sensitivities established by Ontario’s Ministry of Health. The committee included two eminent teaching hospital physicians and a highly respected epidemiologist. We issued a report that identified existing, publicly funded means of diagnosis, and accepted various methods of patient management, including avoidance of offending agents.

      Equally important in our minds were measures, such as income support, that would provide concrete assistance to members of this vulnerable group and reduce the risk of preventable harm.

      To this end, we recommended that financial and social support services be awarded on the basis of the extent of a patient’s disability, rather than on the basis of a particular diagnosis.

      This would reduce the risk of depriving patients of support simply because medical professionals might be unable to differentiate between the myriad possible causes.

      We also called for further research and the development of services to support that research, while also helping those who were experiencing a wide range of very difficult symptoms.

      We did not feel that more research was needed before these and other measures were introduced to protect patients from being caused harm through inappropriate labelling or the denial of reasonable accommodation.

      In the years immediately following the report, several positive steps were taken in response to the recommendations. Public support systems became more accepting of these individuals’ needs. At the federal level, departments and agencies began addressing unhelpful attitudes about this disability, not only within the departments and agencies themselves, but also within doctors’ offices, medical associations and the broader community.

      Health Canada organized conferences, distributed documents and publicly supported recommendations to protect patients from unnecessary harm. The Department of Justice and Canada Mortgage and Housing Corporation funded self-help groups to support citizens with environmental sensitivities.

      Regrettably, over the past few years, that initial momentum has been largely lost, and many of the earlier recommendations seem to have been forgotten. An ongoing, legitimate, but separate debate about medical approaches is again obscuring protection issues and returning us to the situation that prevailed when the report was written.”

      ~ George M. Thomson, B.A., LL.B., LL.M. (2001)
      who chaired the extensive report by the Ad Hoc Committee on Environmental Hypersensitivity Disorders for the Province of Ontario in 1985,

      Considering how our needs have been abandoned despite official knowledge for over 30 years, and things are worse now than they have ever been for us, one could easily come to the conclusion that there’s a deliberate desire NOT to prevent our suffering, but to inflict more until we either die from the exposures and lack of care, or suicide…

      Ontario Ministry of Health and Long-Term Care, you can and should be doing a lot better here!

  3. This is a global problem people all over the world have mcs. Other countries seem far ahead of us…why are we trying to reinvent the wheel? It may not be needed.
    check this site for example

    I was looking around the site above seeking a cure or clue as always this next link caused me to wonder about the limbic retraining I have heard so much about….. always wondering….

    decided to just post that one it is below

    Social and Medical Implications of psychosomatic labelling of MCS individuals

    By Dr Sharyn Martin 2011

    Perpetuating the psychogenic view has created barriers between health care providers and patients with Medically Unexplained diseases such as CFS, FM and MCS and those with chronic pain. The common social outcomes in these instances are stigma, the experience of isolation and experience of emotional distress. The RACP 2002 Chronic Fatigue Syndrome (CFS) Clinical Practice Guidelines state that somatisation and somatoform are unhelpful diagnostic labels that are best avoided in patients with CFS. (RACP, 2002)

    Unless there is direct evidence of malingering, speculative judgments about unconscious motivation should be avoided. ‘The psychoanalytical concept of ‘secondary gain’ has been misused in medicolegal settings and does not rest on a solid empirical base’. (RACP, 2002)

    ‘It is all too easy for practitioners to collude with the insurance industry in unethical ‘deny benefits’ at all costs practices. These cases included ‘expert’ reports in which clinicians seemed oblivious to the fact that compensation neurosis is an outdated oversimplification of complex issues (Cantor, C and Neulinger, K. 2003)

    Although the pathogenesis of MCS is not fully understood, this does not make it right to decide MCS is a psychological problem (Read. 2002 p. 25, para. 4). Such an approach cannot be justified medically or ethically. The New Zealand MCS report states …It is important not to conclude that because a biological cause has yet to be determined then MCS should be considered a psychological disorder. (Read, D. 2002)

    Emotional, Behavioural Problems are not unique to MCS

    There are psychological problems associated with living with chemical sensitivity, and similar pressures exist for other conditions and diseases that affect a person’s whole life. Recent research with better defined patient populations concluded that psychiatric symptoms are more likely to stem from, rather than to cause, symptoms of environmental sensitivities.

    Although emotional and behavioural problems, including depression, are more frequently found in people with sensitivities, fibromyalgia (and other Medically Unexplained Diseases) than in the general population, psychological symptoms cannot be accounted for by psychiatric illness alone (Sears E, 2007).

    People dealing with a poorly recognized chronic illness that affects their brain, impairs their quality of life and earning potential, and has impacts on family and friends, would be under psychological distress. They could be expected to report anxiety and depression’. (Sears, M E 2007).

    In fact psychological symptoms are a consequence of many disorders such hypothyroidism and UTIs, and are seen for what they are – an aspect of the disease and not the cause. ‘Adding to the complexity for those with MCS are that findings that environmental factors such as pesticides and moulds have been shown to be associated with symptoms such as depression and anxiety’. (Sears, M E 2007)

    In a study to assess the relationship between self reported chemical sensitivity, allergy and medical illnesses to anxiety and depression anxiety was positively associated with all three. Depression was comparable to anxiety in associations with chemical sensitivity and allergy, while it was more related to other illnesses. The relationship between chemical sensitivity, allergy and medical illnesses is not unique and does not support the contention that chemical sensitivity is somatised anxiety (Bloch, R M and Meggs, W J. 2007)

    “The existing literature, although dispersed across many disciplines, suggests that many unexplained clinical conditions—for example, the chronic fatigue syndrome, fibromyalgia, and temporomandibular disorder—share demographic, clinical, and psychosocial features, as well as objective findings. In fact, it has been suggested that the diagnosis assigned to patients with one of these illnesses depends more on chief symptom and clinician specialty than on the actual illness” (Aaron and Buchwald, 2001).

    “Comparative investigations in referral clinic populations have reported that up to

    70% of patients with fibromyalgia meet the case definition for the chronic fatigue syndrome and, conversely, that
    35% to 70% of patients with the chronic fatigue syndrome have fibromyalgia.
    Moreover, 13% to 18% of patients with temporomandibular disorder meet fibromyalgia criteria and
    75% of patients with fibromyalgia satisfy the case definition for temporomandibular disorder.
    Other painful conditions, such as tension headache, also commonly co-occur with fibromyalgia.
    Furthermore, 32% to 80% of patients with fibromyalgia, 58% to 92% of patients with the chronic fatigue syndrome, and 64% of patients with temporomandibular disorder also have IBS.
    Conversely, 32% to 65% of those with IBS meet the criteria for fibromyalgia.
    Moreover, one study showed that the symptoms reported by patients with fibromyalgia and patients with interstitial cystitis were more similar to each other than to those reported by healthy controls.
    Finally, in 53% to 67% of persons with the chronic fatigue syndrome, illness worsens with exposure to various chemicals, and
    55% of persons with fibromyalgia have symptoms consistent with multiple chemical sensitivity.
    In contrast, 30% of patients with multiple chemical sensitivity meet the criteria for the chronic fatigue syndrome.
    Taken together, these direct comparisons of patient groups generally demonstrate high rates of diverse clinical conditions regardless of the condition examined.”

    “In studies that assessed patients with a single unexplained clinical condition for the presence of at least one additional syndrome found that,

    among patients with fibromyalgia,
    21% to 80% have coexisting chronic fatigue syndrome (39, 43, 61),
    36% to 60% have IBS (8, 27, 32, 40, 43, 48, 51),
    10% to 80% have headaches (27, 32, 43, 57),
    75% have mandibular dysfunction (35), and
    33% have multiple chemical sensitivity (54).
    Many patients with the chronic fatigue syndrome also have
    IBS (63%) (49),
    multiple chemical sensitivity (41%) (64), and
    other unexplained illnesses (67).
    Of interest, these studies suggest that sex may influence the co-occurrence of unexplained clinical conditions. For example,
    IBS is more common among women (40%) than men (14%) with fibromyalgia (66), and
    fibromyalgia occurs more often in women (36%) than men (12%) with the chronic fatigue syndrome (12).”
    “The patients’ symptoms and syndromes have been called “functional,” “somatic,” “medically unexplained,” and “psychosomatic….A major limitation of all categories of explanatory models is their inability to account for the occurrence of unexplained clinical conditions in a large proportion of affected patients (for example, many patients do not have depression, have not been abused, or do not demonstrate neuroendocrine changes at the time of testing).” (Aaron and Buchwald, 2001)

    Evidence against psychiatric/psychological mode

    ‘Physicians seeking the most efficient and effective treatments have found that when people with environmental sensitivities were placed in an uncontaminated environment in which their physical symptoms resolved, their psychological symptoms also resolved. Successfully alleviating symptoms of sensitivities (with safe housing, workplaces, food, water, etc.) is necessary before other psychosocial interventions may be helpful. (Sears, M E 2007)

    Saito in 2005 found that MCS patients do not have either somatic or psychologic symptoms under chemical free conditions and symptoms may be provoked only when exposed to chemicals (Saito, M et al. 2005)

    Development of sensitivities usually pre-dates symptoms of depression and anxiety in people with sensitivities, with 1.4% of patients identifying problems before the onset of sensitivities and 38% reporting the development of depression, anxiety and other symptoms after sensitivities became apparent. (Sears, M E 2007)

    Caress et al, 2002 found that only 1.4% of subjects reporting hypersensitivity to common chemical products had a prior history of emotional problems, whereas 27.7% developed problems after the emergence of hypersensitivity to chemicals.

    Seeber et al, 2002, found that influences of trait anxiety and chemical sensitivity on reports of annoyance, bad odor or irritation are only weak. While there was a correlation between odor or bad smell and annoyance, reports of sensory irritation did not correlate to annoyance. In this study measures of self reported irritation were sufficiently reliable to show a dose-response relationship to various sensory irritants.

    When abnormal psychological/psychiatric data are obtained on personality tests or from interviews administered to patients who report symptoms of MCS, investigators typically attribute these to either psychiatric traits or psychogenic origins of illness. A study by Davidoff et al, in 2000 evaluated the plausibility of non psychiatric explanations of psychologic/psychiatric symptom data. The study results show the strategy of administering psychometric tests to ill populations for the purposes of evaluating psychiatric illness or traits, and/or psychogenic origins of illness was shown to be potentially misleading (Davidoff, A L et al. 2000)

    Psychogenic labelling has been found to be unhelpful and damaging.

    “Psychiatric labelling is generally unhelpful. In most cases, there is little evidence that the disorder is “psychosomatic”, and inappropriate speculation about “school phobia” may be damaging and counterproductive. Early correction of such misunderstandings leads to fewer difficulties in the long-term.” (RACP, 2002)

    In fact Joffres et al, 2001 state that ‘A priori labelling of these symptoms as psychogenic has done tremendous harm; It has hindered the ability of affected individuals to seek help, and also the amount of research conducted. It is time to recognise that we cannot separate the psyche from the physical dimensions of the human being and that we must understand and support ES (environmental sensitivity) sufferers’ (Joffres, M R et al. 2001)

    While the debate continues into the causes of MCS, ‘The controversy and confusion regarding the aetiology of MCS translates into poor medical diagnosis and treatment for patients with MCS (Gibson PR et al, 1998). Gibson reported in an earlier article that persons with MCS reported seeing a mean of 8.2 physicians each, waiting 7.5 years for a diagnosis spending a considerable amount of money on their health, receiving misdiagnoses, and suffering iatrogenic harm’ (Gibson, P R et al. 1998).

    Gibson and Vogel’s study in 2009 found that people with MCS have an overall mean Sickness Impact Profile score of 25.25%, showing serious impairment, with the most serious dysfunction in the categories of work (55.36%), alertness behaviour (53.45%) and recreation and pastimes (45.20%). They found that chemical sensitivity is poorly understood by providers and results in extensive financial and treatment obstacles for those who experience it. Understanding the impact of the health condition is crucial to communicate with and treat persons who experience the sensitivities (Gibson and Vogel, 2009)

    Graveling et al in their literature review found that for a small number of people MCS does exist and the available evidence seemed to strongly support a physical mechanism rather than a psychological basis. (Graveling, R A et al. 1998)

    ‘Research shows that psychological interventions are not entirely effective. For example, cognitive -behavioural therapy, used to desensitize one to the fear of sensitivity to substances, only partially reduced symptoms in a single case. Medication and psychological interventions may be used to treat phobia or panic disorder, but for individuals with environmental sensitivities, lasting benefits have been achieved only by avoiding incitants. In a survey of 917 people with multiple chemical sensitivities, tranquilizers and antidepressants were the least effective therapy and caused harm (possibly because of a genetically-determined inability to metabolize them). In another study, psychological treatment of medically unexplained physical symptoms provided no additional benefit compared to care by a general practitioner’. (Sears, M E 2007)

    Some problems found in the 2000 Gibson study associated with psychotherapists were:

    Inadequate medical screening
    Not listening to what patients say
    Fitting new problems into old categories
    Psychological intervention for individuals with MCS has been anything but supportive
    People reported having felt harmed by mental health providers e.g. prescribed psychoactive drugs
    Gender bias in mental health especially affects women
    Inappropriate psychological labelling was distressing e.g. depression, schizophrenia, post traumatic stress disorder … because individuals were affected by chemicals
    Contamination of depression inventories with somatic items
    Inappropriate test methods
    Ignoring studies that support physical explanations(Gibson, PR 2000)
    Lack of education about the dangers of chemicals and MCS can also add to the distress of individuals with MCS. Their self-management efforts can be misunderstood by the general public and police, who may then involve local mental health services. Some individuals with MCS have been detained in a mental health facility which is basically dangerous for them (Sears, M E 2007). Once detained they are in an unsafe environment in which they can be exposed to triggering substances that can cause them more harm, and if medicated can suffer dangerous reactions – individuals with MCS can die as a result of chemical exposure.

    Social and Medical Consequences

    Using a psychosomatic basis is not helpful and dismissive of the needs of those with MCS.

    For those with MCS, if the psychogenic approach is not changed, individuals with MCS will continue to experience prejudice in their efforts to get safe and appropriate health care. They will not be believed and will continue to be trivialised by clinicians in their efforts to have their needs safely and properly addressed.

    Individuals with MCS usually have other diseases, some of which are chronic, painful and disabling conditions. These are not necessarily related to MCS, and can be diseases requiring health interventions. Such conditions can be missed or left untreated if an individual is thought to have a psychological problem and individuals with MCS will simply go on suffering the most appalling physical distress, compounded by insults and inhumanity.

    Disability status and eligibility for support is medicated by the medical profession. It can be ‘hit and miss’ as whether or not a medical professionals understands about MCS and is sympathetic . Health care providers are also aware of the ‘stigma’ of being seen as pro MCS and the marginalised by mainstream medicine. It becomes difficult to impossible to be included in medical, social and disability services.

    Insurers, industry and states have a vested interest in denying and dismissing claims. There is a long process of claims and counter claims, defendants employing defer and delay tactics. For those with MCS the process of exclusion from services because of suggestions of a mental illness it is insulting and humiliating.

    The lack of acceptance and integration into the medical institutions leaves health care inaccessible to those with chemical sensitivities.

    A psychosomatic view ignores:

    The existence of massive information on the effects of chemicals on health in the general population for example air pollution and heart conditions, asthma;
    Existence of documentation on physiological stressors and physiological changes in MCS
    Maintaining and perpetuating this view:

    Means that disability advocates will continue to be unfamiliar with the chemical barriers and may view access as low priority and competing for limited resources. Disability services will continue to be ill equipped to accommodate the needs of those with MCS
    Removes motivation for advocates and others who interact with people with MCS to attempt to understand the complexity of how chemical sensitivities develop and impact on people’s lives.
    Long term damage to prospects of research projects, clinical guidelines and chance of quality of care
    Short (and long) term damage to sufferers and their families
    As well as denied treatment/acknowledgement of MCS, denied medical treatment for non-MCS related disorders.

    Impact on families and family dynamics.

    Alternative 1. Family/partner do not support sufferer.

    The medical stigma of psychogenic origin reinforces social and cultural ideals and provides a basis on which MCS can be denied.
    Family, friends may experience and display anger and frustration at the sufferer not being able to function ‘normally’.
    Families may be unwilling or unable to accommodate MCS
    Sufferer may try to fit into a ‘contaminated’ environment, which leads to worsening of the condition.
    Leads to family breakdowns
    Sufferer even more isolated with less support and human contact
    Alternative 2. Family/partner does support sufferer and takes measures to protect the sufferer

    May be accused of encouraging the illness behaviour
    Where child a child suffers from MCS may be removed from the family ‘in the child’s best interests’
    Where a partner/spouse involved, they may be accused of denying treatment, eg by not taking sufferer to hospital or medical facility that the partner/family knows will exacerbate the condition
    Family members and partners may also experience some degree of isolation (from friends, family, social contacts).
    They need to take on extra responsibilities and activities such as the shopping, , appointments for general services (such as dealing with banks, car registration etc)
    As well as being denied treatment/acknowledgement of MCS, people with MCS are denied medical treatment for non-MCS related disorders. The implications for the family is – How are they to deal with major medical events when they may need to deal with an emergency and take them to a hospital?

    Life Impacts for people with MCS (Gibson et al, 2007)

    Work and Finance.

    Up to 75% of people with MCS are unable to work, of those only 7% considered their environment safe
    Many of those unable to work were forced from the workplace
    Many have difficulties with obtaining WCB, insurance claims and disability pensions
    An ASEHA 2011 survey found that 84.8% of respondents with MCS reported being unable to work.

    Medical and Social Services Care

    Inaccessible for the majority of those with MCS.
    Barriers include chemical pollution, expensive medical costs, treatments ineffective with many doing more harm than good
    A 2011 ASEHA survey of MCS sufferers found that 59.5% were unable to access Health Services, and 83.3% to Allied Health and Respite Care Services. Only 39.5% considered that their GP to be helpful, 30.2% sympathetic and 30.2% neither. Sixty-six percent reported that they were unable to access Disability and Social Services. The reasons given for the inability to access services were poor indoor air quality, perfumes, pesticides, finances and inability to qualify.


    Low to no income means unable to find appropriate housing
    No appropriate housing available
    Increased expenditure in an attempt to make home safe
    High relocation costs often out of reach
    Relocation can increase isolation
    The combined negative impact from issues with Work & Finance; Medical & Social Services care and Housing has a compounding negative on personal distress and identity changes.

    Personal distress

    Loss of work
    Lack of medical care
    Limited housing opportunities
    Limited public access
    General disbelief from layperson and professionals
    People with MCS experience unwelcome identity/personality changes due to

    Chemical exposures and isolation
    Loss of sense of ‘role in society’
    Exclusion/inability to perform in ‘family role’
    Having to completely re-plan and re-design their lives and future.
    All of these compounding factors leads to

    Further isolation (physical and social) and trauma
    1/5 MCS sufferers have seriously considered suicide with 3.3% having made suicide attempts in the Gibson 2007 study.
    Low social support with families and friends unwilling or unable to understand or accommodate their sensitivities
    Lack of acceptance and integration into medical institutions leaving health care inaccessible Gibson, 2007
    An ASEHA 2011 survey found that

    The degree of isolation (from community, friends, family, distance) amongst people with MCS was 37% high, 50% medium and 13% low isolation.

    The degree of disability amongst people with MCS was 52.2% total, 43.5% partial with only 4.3% not disabled.

    People with MCS suffer a loss of a stable family life, familiar personality, loss of self positioning, emotional suppression to meet others’ expectations, redesigning the planned life, forced growth, struggling with support, discovering the spiritual self, and identity reconsolidation and are in line with that in people with chronic illness and other delegitimized illnesses (Gibson et al, 2005).

    Rather than physicians not be able to help people with MCS there are a number of areas where GPs can assist such as Letters or paperwork required for social welfare services.

    In-home support
    Unemployment benefits
    Sickness benefits
    Disability support
    Compensation payments for workplace injury
    Referral to specialists, physiotherapists and OTs etc – MCS patients are likely to have other chronic health issues that require specialist care or other type of intervention.
    Government Housing suitable for allergy/MCS patients
    Home schooling
    Disability parking
    Assistance with medical aids e.g. wheel chair, oxygen at home
    Aged care or respite services
    Pain management services
    Chronic illness/loss/grief counseling
    Social workers
    Ambulance transport services


    Aaron, Leslie A. and Buchwald, Dedra. 2001. A Review of the Evidence for Overlap among Unexplained Clinical Conditions. Annals of Internal Medicine Volume 134(9 (Part 2)) Supplement, 1 May 2001, pp 868-881

    Bloch, R M and Meggs, W J. 2007 Bloch, R M and Meggs, W J. 2007. Comorbitity patterns of self-reported chemical sensitivity, allergy and other medical illnesses with anxiety and depression. J Nutr & Env Medicine 16(2):136 – 148.

    Cantor, C and Neulinger, K. 2003 Cantor, C and Neulinger, K. 2003. Premorbid functioning, welfare issues and ethics in chronic fatigue syndrome. Australian Psychiatry 11(3):312 – 318

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    Lifting The Lid on the Allergy Epidemic
    Fragrance, Perfume, Scent Information
    A survey of individuals with MCS in Australia, 2011
    Links to Other Sites
    Template Sample Letters For Schools
    Sources of Atmospheric Allergens and Irritants
    United Airway Disease
    Chemical Warfare at Work: Your Office is out to get you!!!
    Allergy and Your Skin
    Pesticides They’re Everywhere

    Copyright © 2011/12 ASEHA.
    All Rights Reserved.

    • Thanks Sandy.

      If getting a disabling illness that most people have never heard about doesn’t traumatize you, the reactions you get from all levels of society possibly will!

      Those retraining programs only address the stress and trauma which can and do exacerbate symptoms from other causes.

      This is copied from the DNRS website:

      This intensive program is experiential in nature and integrates components of:

      • cognitive-behaviour therapy
      • mindfulness based cognitive restructuring
      • emotional restructuring therapy
      • neural linguistic programming
      • incremental training (a form of neural shaping)
      • behaviour modification therapy

      This mechanism-targeted behavioural intervention is based in an affect-science perspective, and focuses on the training of a number of regulatory skills including attention focusing, attention distraction, cognitive reappraisal, emotional distancing and emotion regulation.”

      If the industry generated stigma and systemic barriers and obstacles were removed so we could simply have our basic needs met, then people wouldn’t be traumatized or need the brain retraining programs.

      Don’t get me wrong, I do see a need for some of the skills and tools in those programs, because many people have never learned them and better self care is essential for quality of life, but even the best self care does NOT remove the causes for these disabling health conditions, nor do the programs address the systemic discrimination and accessibility barriers, or the every increasing toxicity of everyday foods, products and materials.

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