Canada has hope for Myalgic Encephalomyelitis (ME)

According to research, Myalgic Encephalomyelitis (ME) affects 30 million people worldwide - a staggering half a million people in Canada alone - from ages 4-70. Over the years the disease has thought to be brought on by a stressor such an infection, or an accident or psychologically tragic event. There may be genetic or hormonal components at play as well, which could be contributing to the high comorbidity rate of ME and Endometriosis. Similarly this may help explain the disproportionate amount (3:1) of women affected by this disease.

ME, like so many other invisible illnesses struggles to get the much deserved attention from the medical system, and research funding bodies. Early last week, a resounding hooray was heard amongst Canadians during the announcement that the Canadian Institutes for Health Research will be awarding $1.4M toward a research network focused on ME. This network will be led by Alain Moreau, a Quebec researcher who says “Researchers have recently found that myalgic encephalomyelitis is probably not a single disease. We would rather talk about a spectrum; Five subgroups of patients with different symptoms have been identified and the disease may have different causes or mechanisms.” The complexity of this disease is a challenging one for physicians, and seemingly a grossly generalized disease with dedicated researchers here in Canada (with international collaborations) aimed at distilling these subcategories. We have seen this story written in this disease’s history once before where chronic fatigue - a common but not defining symptom of ME - was confounding diagnosis, coining this disease as Chronic Fatigue Syndrome (CFS). Once removing fatigue from the diagnosis criteria, the International Consensus Criteria (ICC) put more emphasis on more defining characteristics with a set of symptoms to aid in diagnosis and to distinguish ME from other chronic disorders.

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.

If you, or someone you know has signs of Myalgic Encephalomyelitis, you can also check out a great resource here in Canada called MillionsMissingCanada - a local group advocating for ME research funding and access to treatment options.