THE SIGNATORIES TO “PUTTING THE CHEMICALS BACK IN MULTIPLE CHEMICAL SENSITIVITY”

Principal writer: Varda Burstyn

Collaborating Author: Maureen MacQuarrie

Ontario Environmental Health Advocates Group: Bev Agar, Ted Ball, Varda Burstyn, Mike Ford, John Doherty, Izzat Jiwani, Denise Magi, Maureen McQuarrie, Scott Simpson, Adrianna Tetley

Varda Burstyn

Varda Burstyn is a life-long environmentalist, an award-winning author and a consultant who has worked and published in environmentally-related health issues since the late 1980s. She has also been a volunteer board member with a number of environmental organizations, including Greenpeace Canada and the Environmental Health Association of Ontario. Since 2008, Varda Burstyn has been working with non-profits, patient advocates and the Ontario government to meet the health and social service needs of the nearly one million Ontario residents with chronic, co- morbid, environmentally-linked illnesses, initially bringing together a collaborative of advocates and providers who obtained ministry funding for the major study process for an Ontario Centre of Excellence in Environmental Health business case. She worked as the lead consultant on that project and was a founding member of the Ontario Task Force on Environmental Health. She advised extensively on the implementation report awaiting action at this time. She is currently a member of the board of the Chemical Sensitivity Foundation (US).

Maureen MacQuarrie

Maureen MacQuarrie was a member of the Ontario Task Force on Environmental Health. She is a lawyer and policy advisor who was forced to stop working in 2001 due to ME. She has been an advocate for those with ME and other related health issues and has used her strong analytic skills in background documents and to raise issues with policy makers. Maureen is the editor of Eleanor Stein MD’s 2012 self-management manual “Let your light shine through: Strategies for living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivity” as well as Dr. Stein’s more recent, “More Light” and is a collaborator on Valerie Free’s “Lighting up a Hidden World: CFS and ME. Maureen is a member of the Steering Committee for the ICanCME Research Network as well as on its clinical care working group.

Bev Agar

Bev Agar, who was an alternate member of the Ontario Task Force on Environmental Health, was forced to retire early from her teaching position and move out of Toronto due to a lack of accommodation for serious ES/FM/ME. She has fought long and hard for accessibility and accommodation, advocating at the policy level and helping many individuals craft their legal battles for disability rights. She has also worked to raise awareness in a number of organizations, ranging from local citizens groups to national federal departments, convincing them to make specific policy changes. Bev is optimistic that positive change will occur so that everyone can reach their full potential and live barrier-free lives, free of discrimination.

Ted Ball

Ted Ball has a wealth of top-level government experience after 15 years as a Chief-of-Staff and Senior Policy Speechwriter to Ministers in the Bill Davis Government — where he participated in the development of a $1.5 billion Industrial Strategy; in provincial constitutional Premiers’ Conferences; in health policy reforms in mental health and long term care — as well as playing a role as Chief-of-Staff during two provincial budgets in the Ministry of Finance.For the past twenty years, Ted has been the CEO of Quantum Canada, later Quantum Transformation Technologies, a leading-edge capacity-building company with systems thinking tools for strategy execution and for designing complex adaptive systems for integrated healthcare services delivery. Quantum also offers their Patient Experience Design Methodologies to design the “seamless patient experience” across the continuum-of-care across a delivery system, or across the silos within an organization. Ted has served as strategy coach to CEOs of Teaching Hospitals/ Community Hospitals/ Deputy Ministers/ and the Secretary to Cabinet in the Government of Ontario.He has worked on environmentally-linked illnesses as a volunteer lobbyist, MEAO Board member, and as Co-Chair of the Environmental Health Business Case Study and as an active Social Media advocate who weekly engages thousands of readers on his passionate arguments for patients with MCS and the other environmentally-linked illnesses.

Mike Ford

Mike Ford, who served as a member of the Ontario Task Force on Environmental Health, is a Toronto-based bilingual professional songwriter, musician, and educator with 25 years of experience in the entertainment industry, as well as 15 years of experience creating and delivering artistic, socially-focused educational programs across Ontario. As a caregiver, he has seen the incredible difficulties and obstacles that MCS presents, in terms of physical pain and debilitation, housing, day-to-day functioning, threat of exposures, health care challenges, financial hardship, and legal ordeals. Mike has repeatedly seen how vastly short society falls in terms of providing understanding, guidance, help, and healing to those suffering from the effects of toxic environmental exposure.

John Doherty

John has spent nearly 25 years as consultant working with healthcare, housing organizations and other agencies to be more effective and focussed in serving their local communities. He has been actively involved in the process to create a centre of excellence in environmental health over many years, serving as the co-chair of the OCEEH interim steering committee. He has volunteered for many non-profit organizations, in various roles, including, for many, as chair of their board of directors. John was elected as a Trustee with the Toronto Board of Education for nine years during which he focused on finances, human resources and improving access to the school system. He was chair of the Board of Greenpeace Canada for seven years, the leading environmental organization in Canada. During that time, Greenpeace campaigned with indigenous leaders in Alberta on the long term health impact of the tar sands on community health. As a Board member and Chair of the Toronto Environmental Alliance, TEA worked to highlight the impacts of environmental degradation on communities in Toronto and how to engage local residents in the fight for a cleaner, healthier environment.

Izzat Jiwani

Izzat Iwani, PhD, was a member of the Ontario Task Force on Environmental Health, and a co-chair of its Care working committee. She is a member of ICanCME Research Network on its clinical care working group. She has been a post-doctoral fellow with the Research Chair in Governance and Transformations of Health Care Organizations and Systems (University of Montreal). Izzat has published on, among other topics, Canada’s chronic disease management systems and a comparative study on Ontario and Quebec’s primary care models. She is a health and social policy analyst and a researcher with broad experience in the public sector that includes the Ontario Ministry of Health and Long Term Care in the Strategic Health Policy division and a qualitative research on the status of palliative care in AKDN hospitals in six developing countries. As a caregiver parent to an adult child with debilitating ME and MCS, Izzat has witnessed how a young well-endowed professional with much to contribute to society is severely hampered by lack of knowledgeable clinical care professionals and supportive social care systems. As a social scientist, she supports that in the current milieu of emerging and changing scientific knowledge, public policies must informed by research inclusive of promising practices and the patient experience in order to effectively improve the lives of those with chronic complex illnesses such as MCS and ME.

Denise Magi

Denise Magi is President of The Myalgic Encephalomyelitis Association of Ontario (MEAO), an organization supporting, representing and bringing awareness to the medical conditions of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia (FM) and Environmental Sensitivities/Multiple Chemical Sensitivity (ES/MCS). In the public sector, Denise has a long and extensive work experience as a legal assistant and in the library sciences. Denise has been on various steering committees including the initial steering committee that developed the business case proposal for the Ontario Centre of Excellence in Environmental Health, which seeks to establish a patient-centred model of medical care and system of service delivery for patients with ME/CFS, FM and ES/MCS, as well as other environmentally-linked medical conditions. She is dedicated to the cause of establishing a patient-centred health care delivery system to help Ontarians living with environmentally-linked medical conditions. She would like to ensure that the recommendations of the business case proposal and the aligned recommendations of the Task Force on Environmental Health be implemented as fast as possible.Denise was also a member of the Task Force on Environmental Health. She is a patient with personal knowledge of ME/CFS, FM and ES/MCS and is a long standing volunteer and health advocate.

Scott Simpson

Scott Simpson is a long-time patient advocate, including for patient safety, ensuring the patient’s voice and perspective is meaningfully involved in policy, research and treatment. Scott worked with Dignitas International, a Canadian medical humanitarian non-governmental organization, to increase access to life-saving HIV medications and health care in Malawi, Africa. Domestically, Scott worked in HIV counseling intervention programs at Toronto Metropolitan University, and is the co-author of two published papers about their findings. He is also a co-author of a published article on patient safety for ME and long COVID. Scott is co-founder of the advocacy organization Millions Missing Canada, part of the Millions Missing international collaborative. Scott is also an Executive Committee member of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis (ICanCME) Research Network.Scott is a founding member of the Patients for Patient Safety Alliance Canada; hosts the Medical Error Interviews podcast; and provides counseling to people living with medically marginalized diseases like MCS. Scott has been living with HIV since 1998, and with ME since 2012.

Adrianna Tetley

Adrianna Tetley has over 40 years experience in advocacy, public administration, community development, governance and policy development. Between 2004 and 2020 Adrianna was CEO of the Alliance for Healthier Communities, an organization in Ontario that represents community governed interprofessional primary health care organizations including community health centres. In 2011, advocates with environmentally linked health conditions, approached the Alliance to sponsor a grant from the Ministry of Health to develop a business case for an Ontario Centre of Excellence in Environmental Health. In partnership with Ted Ball, Adrianna co-chaired the Steering Committee for the business case. This began the over 11-year journey in becoming a strong advocate for a system of care for people living with ME/CFS, FM and ES/MCS. Upon retirement from the Alliance, Adrianna continues her commitment in a volunteer capacity as treasurer on The Myalgic Encephalomyelitis Association of Ontario (MEAO) on organization that represents environmentally linked complex chronic conditions, including ME/CFS, FM and ES/MCS. Her priority is to ensure that the recommendations of the business case proposal and the aligned recommendations in the Taskforce on Environmental Health reports be implemented with appropriate funding as soon as possible.