Report: RECOGNITION, INCLUSION AND EQUITY – THE TIME IS NOW

Many of us have been waiting for action for decades, let’s hope that this is the project that finally makes it happen. It has been a long time coming…

‘RECOGNITION, INCLUSION AND EQUITY – THE TIME IS NOW: PERSPECTIVES OF ONTARIANS LIVING WITH ES/MCS, ME/CFS AND FM’

From Varda Burstyn:

At long last, I am writing to let you know about four new groundbreaking reports – products of a 5-year initiative that I and colleagues began in 2008 – that present exciting new research on the three environmentally linked conditions of ES/MCS, ME/CFS and FM, and that develop a wonderful new model of care and support for those living with the conditions in Ontario.

With the strong support of a number of senior health care officials, medical, environmental health and public health experts, the business case for this model and the four reports were submitted to the Hon. Deb Matthews, Ontario’s minister of health, in November 2013 and released to the public on December 5. The information in these reports has major implications for every community and every country, for environmental, economic, human rights and health policy writ large, as well as for the specific health needs of this ever-growing population. …

ES/MCS, ME/CFS and FM – three chronic, overlapping, environmentally–linked conditions that are increasing rapidly – are responsible for great suffering and disability among those who live with them and create great hardship for families. As well, as our community consultation demonstrated, these conditions are highly stigmatized due to persistent, incorrect and obsolete medical myths that act as massive barriers to accurate diagnosis and appropriate treatment in the health care system and to support by social services and even by families and friends.

Further, these myths obscure the real health harms ‘everyday chemicals’ are doing to everyone. …

Note:The specific recommendations for which the OCEEH business case developed a proposed budget, staffing complement and facility requirements are explicated at length in PART 5 of the RIE Full Report, and are tightly summarized in pages 28-35 of the RIE Highlights report.

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These reports have been prepared with funding from the Ontario Trillium Foundation (OTF) and the Ontario Ministry of Health and Long Term Care (MOHLTC).

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‘RECOGNITION, INCLUSION AND EQUITY – THE TIME IS NOW: PERSPECTIVES OF ONTARIANS LIVING WITH ES/MCS, ME/CFS AND FM’
by Varda Burstyn/Paradigm Consultants and
the Myalgic Encephalomyelitis Association of Ontario (MEAO)

– provides a lay person’s introduction to the three conditions and their current status in Ontario’s health care system;

– explains the comparator groups;

– traces new developments in understandings in environmental health and historical attempts to obtain services for the three target groups;

– contains a summary of the findings of the quantitative study;

– provides a detailed report on the in-depth needs, gaps and barriers analysis with respect to health and social supports developed from a major patient survey and community consultation for all three conditions, with many patient voices included;

– analyses special issues regarding women, children, institutional discrimination and critical medical housing needs for those with ES/MCS;

– spells out detailed recommendations for needs services and a province-wide hub-and-spoke model for a network of services – clinical, social, research, education, policy development and community building/outreach
and
– accompanying governmental policy shifts (required) to achieve the objectives named in the title of the report.

(224 pages of report, 40 pages of  appendices).

Full Version (7 MB)
http://www.meao.ca/files/Recognition_Inclusion_Equity-full.pdf

Highlighted Version (4 MB)
provides a highly condensed summary of the full report. (35 pages)
http://www.meao.ca/files/Recognition_Inclusion_Equity-shorten.pdf

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CHRONIC, COMPLEX CONDITIONS: ACADEMIC AND CLINICAL PERSPECTIVES
by John Molot, MD, FCFP, staff physician at the Environmental Health Clinic at Women’s College Hospital in Toronto

– addresses the accumulating evidence of the relatedness of many chronic complex conditions’ to environmental degradation;

– the increasing prevalence and awareness of the three conditions specifically;

– the need for environmental health education and government-funded Canadian environmental health clinics;

– and provides lengthy and detailed recommendations for clinical services, including for assessment, diagnosis and treatment in the OCEEH, in both the hub (a specialist facility) and the spokes (with trained primary health care providers).

(152 pages report, 45 pages appendices)

http://thechemicaledge.files.wordpress.com/2013/12/rie_academic-and-clinical-perspectives.pdf  (2.4MB)

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THE QUANTITATIVE DATA: ENVIRONMENTAL SENSITIVITIES/MULTIPLE CHEMICAL SENSITIVITIES (ES/MCS), MYALGIC ENCEPHALOMYELITIS/ CHRONIC FATIGUE SYNDROME (ME/CFS) AND FIBROMYALGIA SYNDROME (FM)
by epidemiologist Erika Halapy with statistician Margaret Parlor
http://thechemicaledge.files.wordpress.com/2013/12/rie_quantitative-data-report.pdf

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You can also download these reports here:
http://www.meao.ca/events-dec5a.html

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For more information about the reports, see: http://paradigmconsultants.ca/reports/

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Children are also being affected, but diagnosis and prevalence is not being tracked:

From pg 19 of Highlighted Version

The suffering is unnecessary and mostly preventable. Something needs to be done…

RECOGNITION, INCLUSION AND EQUITY – THE TIME IS NOW

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