From the report, ‘Recognition, Inclusion and Equity – The Time is Now: Perspectives of Ontarians Living with Environmental Sensitivities/Multiple Chemical Sensitivities (ES/MCS), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Syndrome (FM)’ by Varda Burstyn/Paradigm Consultants for the Myalgic Encephalomyelitis Association of Ontario (MEAO)
‘…The overarching objective that emerged … can be summed up as ‘normalization’ of care and support for our community. This ‘catch-up,’ future-state goal can be further broken down into the key components of ‘recognition, inclusion and equity’ – our report title. And these terms can in turn be conceptualized as establishing for people living with these conditions the same rights, benefits, policies, services and programs that Ontario provides to those living with conditions of comparable severity. ‘
NEW DOWNLOADABLE REPORTS FROM A MAJOR, FIVE-YEAR PROJECT AVAILABLE NOW
The links below will allow you to download our most recent work on behalf of those with the chronic, overlapping, environmentally-linked conditions of ES/MCS, ME/CFS and FM, written for the patient organization MEAO and for a multi-partner collaborative, charged with submitting a detailed and costed proposal for a new system of services and support to the Minister of Health and Long-Term Care in Ontario.
The first PDF is for the full 264-page report. The second is for a highlights document, summarizing the overall research and recommendations. The Full report is 7.1MB and the Highlights report is 4.1MB. If you’d like to know more about what’s in the reports before you download, please read the section immediately below the links. Following that is a section on the history of the project and our role in it.
At very the bottom of this page is a link to the other two reports (quantitative data and clinical and academic perspectives) produced by the project’s epidemiological and medical consultants.
IN THE ‘RECOGNITION, INCLUSION AND EQUITY – THE TIME IS NOW’ REPORTS
Full report (224 pages of report, 40 pages of appendices – 7.1MB) contains:
- A lay person’s introduction to the three conditions and their current status in Ontario’s health care system;
- An environmental scan with respect to developments in environmental health and historical attempts to obtain services for the three target groups;
- A summary of the findings of the quantitative study;
- A first-time-ever, in-depth needs, gaps and barriers analysis with respect to health and social supports, reported from a major patient survey and community consultation for all three conditions, with many patient voices included;
- Analyses of special issues regarding women, children, institutional discrimination and critical medical housing needs for those with ES/MCS;
- Detailed recommendations for a province-wide hub and spoke system of direct services – clinical, social, research, education, policy development and community building/outreach – and accompanying governmental policy shifts to achieve the objectives named in the title of the report.
Highlights report (35 pages – 4.1MB)
- A highly condensed summary of the full report.
The full report was written with two mandates.
- To present detailed research supporting the need for a new model of care for people living with ES/MCS, ME/CFS and FM, and to explicate this new model – a proposed ‘Ontario Centre of Excellence in Environmental Health (OCEEH).’ A Business Case for the OCEEH then developed the budget, staffing complement and facilities recommendations. All reports were submitted to the Hon. Deb Matthews, Ontario’s Minister of Health and Long Term Care, in November 2013.
- To provide the vehicle by which MEAO can report back to its own community on the findings of the community consultation that formed an important part of the larger study; and to provide an accessible document of ‘patient perspectives’ on many issues critical to service provision and policy change to government officials, health providers and health care officials in jurisdictions both in and beyond Ontario.
ABOUT THE PROJECT and OUR ROLE
In late 2008, with the support of the board of the Environmental Health Association of Ontario (EHAO), Varda Burstyn and a colleague with extensive health sector experience initiated a process to persuade Ontario’s Ministry of Health and Long Term Care (MOHLTC) to put into place new and urgently needed services for those with ES/MCS ME/CFS and FM. At that time not even one Ministry official had responsibility for these files, despite the huge and growing numbers of people diagnosed.
Many stages of work ensued over the next five years. Strategic planning set out to involve key partners, who then came together in a developing a collaborative that eventually included environmental physicians and, by 2011, the Association of Ontario Health Centres (www.aohc.org). Between 2008 and early 2012, Varda wrote tens of briefing documents and other communications on a host of relevant subjects for multiple stakeholders in provincial and regional governments and health care organizations. She worked with other partners to develop specialized research and communications at key junctures. Important supporters were enlisted from multiple arenas.
In May 2012 Varda was hired by the Myalgic Encephalomyelitis Association of Ontario (MEAO), which had obtained a grant from the Ontario Trillium Foundation (OTF) for a substantial project to develop a model of care ‘to improve the quality of care and support’ for the three groups. A major part of that project was a first-ever community consultation and patient survey, which proved to be an extraordinarily enlightening process that enriched the final recommendations immeasurably.
As lead consultant on the MEAO project, Varda worked successfully to effect the merger of it with the ongoing MOHLTC-related initiative, which received ministry funding in October 2012. The unified projects’ ultimate objective was to produce a business case proposal for the creation of an innovative, person-centred, province-wide hub-and-spoke system of care and support, affiliated with the University of Toronto medical school and one or more teaching hospitals. This was provisionally named the ‘Ontario Centre of Excellence in Environmental Health’ (OCEEH).
In November 2013 the unified project completed its mandate and submitted its reports. In addition to the business case (an internal document for government) and the ‘Recognition, Inclusion and Equity‘ reports, groundbreaking reports on the quantitative data on the three groups, on academic and clinical perspectives, and on architectural considerations for ES/MCS-safe facilities were also produced to support the OCEEH BC.
All four publically-available reports from that process are available at THE CHEMICAL EDGE, a non-profit website devoted to providing important research on health hazards of everyday chemicals, and information on multiple issues related to environmental and chemical sensitivities.