Government of Canada invests $1.4M in biomedical research to improve the quality of life of people living with myalgic encephalomyelitis
August 22, 2019 – Montréal, Québec – Canadian Institutes of Health Research
It is estimated that more than 580,000 Canadians live with myalgic encephalomyelitis (ME), formerly known as chronic fatigue syndrome, or ME/CFS.
This poorly understood, multi-system disease is debilitating and can strike individuals of all backgrounds and at any age.
Patients experience symptoms including unrelenting exhaustion following mild physical and cognitive activity that is not relieved by rest; muscle and joint pain; headaches; inability to remain standing due to sudden drops in blood pressure; and poor sleep quality. The cause is not fully understood, there are no diagnostic tests available, and there is currently no cure.
People living with ME, and their families and caregivers, can now look forward to a more promising future as a result of a $1.4M investment in a new national network that will create critically needed scientific knowledge about the causes of, and treatments for, myalgic encephalomyelitis.
The Honourable Ginette Petitpas Taylor, Minister of Health, made the announcement today while visiting the Sainte-Justine University Hospital Research Centre in Montreal, where the network will have its headquarters. This investment comes from the Government of Canada, through the Canadian Institutes of Health Research (CIHR).
Minister Petitpas Taylor made the announcement together with Dr. Alain Moreau, a professor at the University of Montreal. Working with a team of patient partners, clinicians, and more than 20 researchers, Dr. Moreau will lead the network that will fill gaps in biomedical ME research and build capacity for research into the disease here in Canada.
“Our government is proud to support the work of researchers pursuing improved quality of life for people living with myalgic encephalomyelitis, their families and caregivers. With this investment, we will advance research into ME, work towards developing testing and treatment options, better medical education and, ultimately, better help for patients.”
The Honourable Ginette Petitpas Taylor, Minister of Health
“It is absolutely necessary to keep promoting research at the Sainte-Justine Hospital, and I am proud that our researchers in Outremont are once again enjoying the confidence of the Government by being granted significant funding to advance patients’ quality of life.”
Rachel Bendayan, Member of Parliament for Outremont
“CIHR aims to improve the health of Canadians, and this community of Canadians is one that has tremendous need. People living with myalgic encephalomyelitis were at the forefront of this successful high-quality research application. This network will produce important clinical results—treatments for patients with ME—as well as improving health professional education and connecting Canada with international leaders in this field.”
Dr. Karim Khan, Scientific Director of CIHR’s Institute of Musculoskeletal Health and Arthritis
“Cutting-edge research at the Centre hospitalier universitaire Sainte-Justine is at the forefront of scientists' efforts to unravel the mystery of debilitating diseases that weigh heavily on patients and their families. I am very proud to see our institution and our scientists at the heart of this initiative that brings hope to so many people.”
Ms. Caroline Barbir, President and CEO, Sainte-Justine University Hospital Centre
“ME is possibly the last medical enigma of the 21st century. The complexity of unresolved questions around its etiology and pathophysiology requires the coordinated efforts of an interdisciplinary collaborative research network to benefit the health of all Canadians living with ME.”
Dr. Alain Moreau, Professor, University of Montreal
Scientific Director, Viscogliosi Laboratory in Molecular Genetics of Musculoskeletal Diseases, CHU Sainte-Justine Research Centre
Scientific Lead and Director of the Interdisciplinary Canadian Collaborative ME Research Network
“Myalgic encephalomyelitis is a long-term disabling disease that greatly affects individuals who live with it. This CIHR grant is a huge opportunity for Canadian researchers and clinicians to work together with patient partners towards finding answers and developing effective treatment options to improve the quality of life for those living with ME.”
Dr. Luis Nacul, Medical Director and Research Director, Complex Chronic Diseases Program, BC Women’s Hospital + Health Centre
“ME has devastated my personal and professional life, as it has that of so many individuals living with this disease. Today, we applaud the Government for recognizing the debilitating life-changing effects of ME and for funding urgently needed research. As we embark in a new partnership with researchers, clinicians and government, we hope that this financial support will be a stepping stone to further funding and research required to understand this complex disease and develop diagnostic tools and effective treatments.”
Christiane Garcia, Interdisciplinary Canadian Collaborative ME Research Network Patient Partner, Board Member - Action CIND and AQEM (Association Québécoise de l’Encéphalomyélite Myalgique)
This $1.4M, five-year investment aims to improve the quality of life of people living with ME through:
- investigating the causes of ME, including possible links to viruses and genes;
- linking cohorts of patients and researchers in Canada and the US, enabling investigators to share research samples, clinical data, and analysis methods;
- supporting graduate students working on ME to build Canadian capacity to research this condition; and
- benefiting from the wisdom of people with ME who are active research partners.
Office of Ginette Petitpas Taylor
Minister of Health
Canadian Institutes of Health Research
At the Canadian Institutes of Health Research (CIHR), we know that research has the power to change lives. As Canada's health research investment agency, we collaborate with partners and researchers to support the discoveries and innovations that improve our health and strengthen our health care system.
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