A BRIEF HISTORY OF THE EFFORT TO ESTABLISH CARE, SUPPORT, RESEARCH AND EDUCATION FOR THE 3 ‘CANARY CONDITIONS’

“ . . . huge strides have been made in understanding what lies behind the conditions and what can be done to help those who have them.”

Patient organizing and government involvement began in the early 1980s. By 1985, intensive patient organizing led to the establishment by the Government of Ontario (Hon. Keith Norton, PC) of the Ad Hoc Committee of Inquiry into Environmental Hypersensitivity.

Later that year the Ad Hoc Committee tabled its report to then-Minister of Health, the Hon. Murray Elston (L), proposing both clinical and social support services.

It took eleven years for government to digest and then to fund the initial Environmental Health Clinic (EHC) now situated at Women’s College Hospital, and a highly productive but short-lived research program that produced the first-ever research into the genomics of ES/MCS, research that made a tremendous splash around the world.

In 1998, with a budget of only $250,000, the clinic was also given the provincial mandate to care for those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Fibromyalgia, an illness that frequently accompanies both conditions, came along with the package.

In the intervening period since 1998 – nearly 20 years – no new funding was given to the EHC, and no other recommendations from the 1985 report were implemented in the province. The conditions were not included in medical school curricula.

In fact, Ontario lost a significant number of physicians who used to care for people living with these conditions, even as the numbers of those afflicted increased at alarming rates, and by 2008 the waiting time to consult EHC physicians for assessment was over two years.

In 2008 a new health advocacy initiative was begun to respond to this vacuum in care and support.

By 2011, a collaborative had come together that included two patient organizations, a group of physicians and a number of health care providers and health care policy experts. Key among these was the Association of Ontario Health Centres as our institutional partner.

This new collaborative worked to secure funding to develop a model of care and service delivery and a business case for these from Ontario’s Health Ministry and the Ontario Trillium Foundation. These funds were obtained in late 2011 and 2012.

THE PROJECT TO DOCUMENT THE NEEDS AND THE SOLUTIONS FOR THE THREE CANARY CONDITIONS

A steering committee for the project period – members are listed below – came together, and oversaw the production of multi-faceted, in-depth studies that resulted in several extensive reports as well as the business case proposal.

Our extensive patient survey and community consultation found that individuals living with these chronic, complex environmentally-linked conditions and their families were experiencing invisibility, denial, exclusion, stigmatization and discrimination in our health and social services systems: ‘a void in services with a few tiny islands of support from a handful of individual physicians.’

Our study also showed massive economic losses and the deplorable waste of hundreds of millions of public dollars in inappropriate physician and other health care utilization.

Our clinical and academic study, whose lead author is John Molot, MD FCFP, of the Environmental Health Clinic at Women’s College Hospital, provided a compendium of information regarding clinical and academic matters.

Our study proposed a model of care and a system of delivery that contains the solution to the myriad issues and challenges identified.

A key document – Recognition, inclusion and equity: Solutions for people living in Ontario with ES/MCS, ME/CFS and FM – The Business Case – submitted to Ontario’s health minister in November 2013, provided government with a costed proposal for staffing and building the proposed system of care. (PDF of summary here: Business Case Executive Summary)

We were able to put forward solutions because – and this is the great news that we want to celebrate as the basis for moving forward – huge strides have been made in understanding what lies behind the conditions and what can be done to help those who have them.

2013 TO THE PRESENT

With no response from government for several months into 2014, an Interim Steering Committee came together to move the study from ‘consideration’ by the government to ‘implementation.’

In November 2014, the government announced it would

  • Recognize the conditions
  • Work in partnership with the OCEEH collaborative
  • Use the business case as the platform going forward

In his response to the government’s announcement, speaking on behalf of the OCEEH Interim Steering Committee, co-chair John Doherty welcomed the announcement, but said, “funding is the litmus test.”

As of February 2015 we await the response from government that demonstrate concrete steps and adequate funding for implementation.

NEWS FLASH: A new report (Feb. 10. 2015) released by the US Institute for Medicine and sponsored by the National Institutes of Health, the Centers for Disease control and three other major US government health agencies dealing with ME/CFS can also be found on our resources page. Its conclusions fundamentally validate those of our studies and reports with respect to ME/CFS.

 Original Steering Committee for the OCEEH Business Case Study