Centre de recherche

Press release

From: Canadian Institutes of Health Research

MONTRÉAL, August 22, 2019 - 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.

Quotes

“The Government of Canada is proud to be able to support the work of researchers pursuing improved quality of life for people living with this debilitating condition. Patients, their families, and caregivers are not alone in this struggle. We hear you and together we will advance research into ME and, ultimately, work towards developing testing and treatment options and better medical education.”

The Honourable Ginette Petitpas Taylor, Minister of Health

“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)

Quick Facts

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.



Associated Links

Video

– 30 –