CareNow Ontario, formerly MEAO, has been advocating and organizing for a system of care with a focus on health needs, disability rights, social service supports and research for Ontarians living with MCS (“ES/MCS”), ME (“ME/CFS”) and FM since 2010. This has been our laser focus and will remain our raison d’etre going forward.
We urgently call for significant funding to develop a three-tiered system of care, embedded within our health care system, to meet the needs of hundreds of thousands of Ontarians who desperately need such a system to provide for their health, disability and social support needs. Ontario has the blueprint for this system, it simply needs to move forward to implementation.
This blueprint emerged from a two-year study process (2012-2013) funded by the Ministry of Health and the Ontario Trillium Foundation to develop a business case for an Ontario Centre of Excellence in Environmental Health. Patient experts from the ME and MCS communities played a leading role in that study. (Read about how this came about and what happened afterwards by clicking here.)
This would be both hospital and university affiliated, though medically independent. It would provide advanced clinical care for the sickest patients, develop education curriculum for medical schools, hospitals and post-grad studies, act as a referral centre for other physicians in the province, and develop ongoing policy to ensure capability is present for our people along the entire continuum of care, from primary care to end of life. It would pro-actively liaise with other agencies to advance disability needs and rights. And it would also work to create a research agenda – epidemiological, clinical and basic – and work with the partners best suited to this research. It would be a chemically-safe space for MCS patients and it would be led by physicians with clinical experience in the most advanced diagnostic and treatment methods.
Between six and ten of such clinics are needed at regional centres where specially-trained primary care physicians work in a chemically-safe space to deliver front-line, hands on care to our groups, much closer to home than Toronto. State-of-the-art diagnostic services, treatment plan development, treatment procedures (e.g. IV infusions, sauna depuration), informed prescribing and key allied health professional services (e.g. physiotherapy, chiropractic, acupuncture, counselling or psychotherapy) would also be provided in a safe space. Staff in these clinics would also act as referral sources and supports to local health care agencies, such as hospitals, home care, long-term care and individual family physicians.
Every community needs a minimum of physicians who are “condition-literate” and can at least identify, diagnose and, where knowledge, resources and safe sites are present, treat the three conditions. These physicians, where needed, can liaise with the nearest regional clinic and/or Toronto centre for more advanced assistance and referral.
This is the vision outlined in the 2013 Business Case for an Ontario Centre of Excellence in Environmental Health. Validated by the 2018 Task Force on Environmental Health’s final report, Care Now – though in much less detail – it remains the blueprint for our Call to Action. It is the standard by which we review all subsequent reports by the Ministry of Health. Ensuring strong voices of patients and expert clinicians in the process remains critical.
We are now waiting to see whether this vision has been the basis for an as-yet not public implementation report, Laying the Groundwork, submitted by Public Health Ontario to the Minister of health in the summer of 2021.
CareNow Ontario will be posting additional calls to action to get Laying the Groundwork released, and to take additional steps to bring about the implementation of the key recommendations from many years of study to achieve the basic needs and rights for our groups.
Please watch this space and come back frequently
Three Point Call to Action CareNow Ontario calls on the Government of Ontario to implement a Three point Action Plan.
We Need Your Voice:
The first phase of advocate mobilization – of patients, families and physicians – began in the early 1980s, when an emerging community of people who had developed pathological chemical intolerance – it was called EI, for environmental illness, at that time – and their doctors came together to demand that the provincial government establish care for this new disease. Today, we call it MCS, for multiple chemical sensitivity. Along with EHS for electrohypersensitivity, the two comprise the larger category, ES – for environmental sensitivities.
This first group succeeded in persuading the Conservative government of the day to establish an authoritative committee to better understand this mysterious and emerging illness and recommend steps for care. Crucially and centrally, the committee made many prescient recommendations that prefigured those that would be made in the 2010s, including that clinical care be established on the model of the leading MCS/[EI] clinic, the Environmental Health Centre – Dallas, a model we also support. But they addressed many other important dimensions as well.
You can find a selection of the main conclusions of the 1985 Ontario Report of the Ad Hoc Committee on Environmental Hypersensitivity Disorders in “Appendix 2” of the key 2013 research document Recognition Inclusion and Equity – The Time is Now: Perspectives of Ontarians Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia (FM), pages 230-231 , downloadable at http://recognitioninclusionandequity.org/resources/
From 1985 to 1990, one Conservative and then two Liberal health ministers promised to act on the recommendations of the special committee, but in fact did nothing. Then, in 1990, an NDP government with three health ministers committed to moving forward on environmental health and MCS specifically established the mandate and funding for a new clinic. This became the Environmental Health Clinic (EHC), located at Women’s College Hospital. The clinic opened its doors in 1996. These ministers also provided direction and funding for an advisory council and a significant initial research fund. All these were seen as early steps, each to be expanded on greatly in mandate and funding in the near future.
From the outset the limited budget of the EHC and the ever-growing demand by sick patients led the clinic physicians to provide only diagnostic services and not treatment – as it does today. A Conservative government followed in 1995. During its eight-year tenure, ME was assigned to the clinic (1998) with a small funding allocation that again supported assessment services but no treatment or follow-up. As well, the funding and administrative support for the advisory board and the research fund ran out and were not renewed, and the lone civil servant who carried this file at the ministry was terminated.
The Liberals returned to power in 2003, but ignored this file. Funding was not restored, let alone increased, no new services were created, and year by year as numbers of sick patients with MCS and ME grew into the hundreds of thousands, the Environmental Health Clinic became less and less able to respond to Ontario’s needs, with years-long waiting lists and, as always, no treatment or follow-up with patients. Periodic attempts by advocates to reach the Ministry of Health were met with total rejection.
In 2005 for the first time the Canadian Community Health Survey included questions on MCS, ME and FM, and shockingly revealed extraordinary numbers of sick people with massive unmet health care needs across the country, with Ontario leading the way. This resulted in advocate organizations EHAO (Environmental Health Association of Ontario, for MCS) and MEAO (for ME and FM) launching new efforts to bring about change. EHAO began a campaign, initiated through the minister’s office, to get action on a 10-point recognition, care and support plan, and in 2010 Dr. Lynn Marshall and EHC colleagues produced an important supportive literature scan: Environmental Sensitivities-Multiple Chemical Sensitivities Status Report: Advances in Knowledge, and Current Service Gaps. Find this at https://www.womenscollegehospital.ca/care-programs/environmental-health-clinic/.
In 2010, MEAO developed a detailed proposal to the Ontario Trillium Foundation for a study to result in recommendations for a system and model of care.
In 2011 and 2012 both initiatives resulted in breakthroughs. OTF awarded MEAO a grant of nearly $100,000, while the Ministry of Health provided $250,000 to the EHAO representatives, partnered with the Association of Ontario Health Centres (now the Alliance for Healthier Communities) for a proposal that included ME and FM as well as MCS. That grant was mandated to support a study that would result in a business case roadmap to create an Ontario Centre of Excellence in Environmental Health (OCEEH). Both groups agreed to combine their goals and resources, hired the physicians from the Environmental Health Clinic for the clinical component of the unified study, and the key study documents were completed and submitted in the Fall of 2013.
Find the following key documents – the business case itself, and its three supporting research reports – at http://recognitioninclusionandequity.org/resources/. Or direct links?
Recognition, Inclusion and Equity: Solutions for of Ontarians with ES/MCS, ME/CFS and FM – The Business Case Proposal (Steering Committee of the OCEEH Business Case Project, 2013) was the sequenced, budgeted, costed plan that was developed from the three research documents written to inform the best design. It made recommendations on the required programs, professionals, dedicated housing personnel, special safe-building specifications, education, training and public awareness programs – all as relevant today as they were nine years ago.
Recognition Inclusion and Equity – The Time is Now: Perspectives of Ontarians Living with Environmental Sensitivities/Multiple Chemical Sensitivity (ES/MCS), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM). 2013. Major research report addressing current state (survey of patients’ experience, needs, gaps in services); special analysis of women’s, children’s, stigmatization issues; in-depth exploration of proposed model of care and delivery system; in-depth discussion of issues in barrier removal (disability issues) across government and the public sector, providing detailed explanation for the design of the components specified in the business case.
Chronic, Complex Conditions: Academic and Clinical Perspectives (Molot, 2013), comprised of a literature scan, descriptions and definitions, and a proposed approach to the clinical framework of best and promising practices in a research framework for new clinical programs. This report explained and affirmed the biophysical approach and rejected the psychogenic approach, and built from this foundation.
The Quantitative Data, Erika Halapy, Epidemiologist, with Margaret Parlor, Statistical Analyst and President, ME/FM National Action Network, 2013. Submitted to support this business case, a first-ever compilation and analysis of statistical findings in Canada and Ontario with respect to our three groups.
Despite promises that had been made before the OCEEH business case study was started, implementation was stalled and, instead, the ministry decided to strike another study process in the form of the Task Force on Environmental Health. This body conducted its research and deliberations from 2016 to the end of 2018. Again, working from the biophysical approach to the conditions, it validated the essential 3-tier design of a system of care – a specialized centre of excellence, regional clinics and local, specially-trained individual family physicians – though the staffing of multiple departments, the sequencing of implementation, the budgeting and funding and other practical issues were not tackled. This is why we still use the 2013 business case as our key blueprint.
The task force did, however, produce a new evidence brief (white paper), updated reports on prevalence, conducted a consultation to assess Ontario physician knowledge of the conditions (poor to none), chronicled the historical lack funding and research on the conditions, catalogued then-existing clinical practice guidelines in other jurisdictions, and advanced some helpful recommendations for developing common practice communities and tools.
The task force’s Phase 1 Report, released July 2017, is called Time for Leadership: Recognizing and Improving Care.
The final report, released December 2018, is called Care Now: An Action Plan to Improve Care for People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia (FM) and Environmental Sensitivities/Multiple Chemical Sensitivity (ES/MCS). Find it at https://www.health.gov.on.ca/en/common/ministry/publications/reports/environmental_health_2018/default.aspx
Once Care Now was made public, MEAO and other advocates began again to press to get action on the implementation of the best recommendations that were made in both the first study phase (OCEEH business case, 2013) and the final task force report (2018). The then-health minister, Hon. Christine Elliott, had longed promised support for this effort, but instead of acting on the recommendation, in February 2020, just before COVID hit Ontario, she appointed Dr. Brian Schwartz, Vice President Public Health Ontario to once again review the recommendations of the final report of the task force and submit yet another report to the health minister with suggestions for developing an implementation plan. That report too was delayed, but eventually was completed and submitted in July, 2021.
That report is called Laying the Groundwork. It has never been made public and no action toward implementation has been taken by either the previous or current Conservative health minister. We are calling for the report’s immediate release.
What we have experienced in Ontario since 1985 – with the one significant but highly limited exception of the establishment of the Environmental Health Clinic in 1996 – is 37 years of neglect, punctuated by repeated studies whose consistent recommendations have simply gone unimplemented. Even if we look at the last dozen years as a distinct period, we have seen endless studies and zero action. As important as those studies have been in theory and as important as they remain as sources for knowledge and practicable action, as long as their recommendations are not implemented, they count for little. This is why CareNow Ontario has pledged to redouble its efforts to bring their recommendations into reality as its sole organizational mission.