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:

DÉJÀ VU ALL OVER AGAIN (pdf)

 

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:

http://vardaburstyn.com/enviro-health-update/ontario-task-force/

 

The full November 2017 issue of ARCH Alert is available here:  http://www.archdisabilitylaw.ca/node/1261

 

P.S.

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!


9 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
    http://www.asehaqld.org.au/index.php/multiple-chemical-sensitivity/mcs-government-reviews/93-australian-government-review-of-mcs-2006-

    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….

    http://www.asehaqld.org.au/index.php/multiple-chemical-sensitivity/aseha-mcs-publication/134-social-and-medical-implications-of-psychosomatic-labelling-of-mcs-patients

    decided to just post that one it is below

    Social and Medical Implications of psychosomatic labelling of MCS individuals

    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.

  4. I have read on many websites catering to MCS with for sale products … one of the items for sale is a program for retraining … sigh.
    I was given a diagnosis of psychogenic movement disorder… all testing that I was told I would get that was given I was told to all people presenting to the program was denied me… the label was given and i was offered psychological apts… which I declined. There were many people in the room when I was seen and the head doc insisted I remove my mask… and for some reason grabbed my left arm really hard… I almost hit the floor… with that many people around me wearing perfumed products the previous 3 hour train ride to get there I expected the results I had… truly I felt set up. So they could grant me a label… not a nice feeling when one is seeking medical help.
    I can attest to the results….
    “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”

    btw I never wanted my full name to appear on this website it may have been my error but either way could you fix it so it just says Sandy… thank you.
    ps
    I read on Chemical Edge that a the last report is expected 2019… any idea when to expect it? I am not holding my breath that this report will change anything since none of the others brought change… what are your expectations?

    • Hi Sandy. So sorry to hear you were abused and assaulted like that!
      I don’t think I can edit your name on previous comments as that is something that goes through wordpress.

      The final report from the Task Force on Environmental Health was submitted to the Minister before Christmas (2018) but they have not released it to the public. As for when they release it to the public, I don’t know.

      On fb, after asking for an update on the final report, the Ministry page responded with:

      The final report has yet to be released publicly. The ministry continues to work on a plan to release the results of the Task Force’s work.

      and

      the ministry is committed to improving care for those with environmental health conditions, including myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), fibromyalgia (FM) and environmental sensitivities/ multiple chemical sensitivity (ES/MCS) ; and, is in the process of carefully reviewing the Task Force on Environmental Health’s report to determine the best path forward. It is important that we are prudent; as ensuring the best outcomes for patients, and building a sustainable system, means getting it right the first time.

      fyi…

      The best path forward was developed even before the task force, and is probably in the recommendations in the final report.

      Also, there’s more info here (check the tab on environmental sensitivities in Ontario on that site for more background info too):

      https://chemical-edge.com/2019/04/11/more-than-75000-sick-ontarians-1-in-6-are-without-healthcare-for-devastating-illnesses-tell-ontarios-minister-of-health-and-long-term-care-christine-elliot-that-she-must-implement-th/

  5. The review by ARCH and CELA is finally out…
    (It includes comments on the final report from the Task Force, and a link to it in the references)

    “EH disabilities are highly complex and, although they are far from being fully understood, are supported by extensive scientific evidence. They typically encompass the following: myalgic encephalomyelitis (ME) also referred to as chronic fatigue syndrome (CFS), fibromyalgia (FM), and Environmental Sensitivities (ES), also referred to as Multiple Chemical Sensitivities (MCS). The evidence base is much stronger for ME/CFS and FM than for ES/MCS.[1] For convenience, this report refers to all three of these conditions under the more generalized heading of environmental health disabilities (EH disabilities) unless more specificity is needed. We discuss the legal rights of persons with EH disabilities in Ontario, the barriers they encounter, and make recommendations for change.”

    https://archdisabilitylaw.ca/resource/paper-the-legal-rights-and-challenges-faced-by-persons-with-chronic-disability-triggered-by-environmental-factors/

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