Gélinas, CareNow Ontario Call for Immediate Action for a Care system for people with Myalgic Encephalomyelitis/Chronic Fatigue System (ME/CFS), Multiple Chemical Sensitivities (MCS) and related Fibromyalgia (FM )

QUEEN'S PARK – France Gélinas (Nickel Belt), NDP Health Critic, joined CareNow Ontario in calling on the Government of Ontario to implement an Action Plan for a system of care for Ontarians with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/MCS), Multiple Chemical Sensitivities (MCS) and Fibromyalgia (FM).

Despite international research and exemplary clinics around the world, Ontario has no standards, no clinical pathways, only a small handful of physicians who understand these conditions and no targeted research which leaves the 1 million people affected with no access to care.

It has been ten years since CareNow Ontario submitted a business case to the Minister of Health. Ten years since the Government has had a blueprint for action in their hands. Yet to date there has been NO Action and NO funding.

Today we call on the government for significant funding to develop a system of care, to meet the needs of the over 1 million people living with these conditions.

Calls to Action to the Government of Ontario:

1. To implement and fund the recommendations in the Business case for an Ontario Centre of Excellence developed in 2013 and validated by the Minister’s Task force on Environmental Health in 2018, including a system of care comprising:

• Tier One: Centre of Excellence in Toronto, with specialist status
• Tier Two: Regional, MCS safe clinics across the province
• Tier Three: Local, specifically trained primary care providers.

2. Immediately release Laying the Groundwork, an action plan to implement the recommendations in the Business case and the Task Force on Environmental Health final report, developed by Dr Brian Schwartz, former Vice President of Public Health Ontario in 2021.

3. Immediately fund the development of case definitions and clinical guidelines for best practices and clinical pathways by expert physicians; and fund the development of clinical curriculum and require Ontario universities to incorporate this along with research projects into medical schools and public health schools.

Quotes:

“I am a person who has been diagnosed will all three medical conditions. I am sick and I am getting sicker. I have no access to a care system that can treat all these conditions. For over ten years I have been on a steering committee, a task force and numerous committees, all advocating for the same thing: A system of care for people with these conditions. Yet there has been no action. Ten Years is too long. We needed a system of medical care and social supports NOW.”

• Denise Magi, President and Chair CareNow Ontario

“For over three decades, my wife and I have been on a journey with many bumps, along with twists and turns. Diagnosed with ME and FM we have travelled the greater GTA over the years to try many different treatments in search of a cure or at least some relief, all with little or no success.”

• Keith Deviney, Caregiver, Vice President CareNow Ontario

“We have 1 million Ontarians living with either Myalgic Encephalomyelitis, Chronic Fatigue system or Multiple Chemical Sensitivities and Fibromyalgia. Ontario has done the studies and knows how to develop a system of care to help them. Yet Minister Jones (Minister of Health) refuses to take any action while people and families suffer. This is not acceptable and has to change, every Ontarians deserve access to care.”

• France Gélinas, NDP Health Critic