About ME (Myalgic Encephalomyelitis) in a Nutshell
Myalgic encephalomyelitis (ME) is a chronic, complex multi-system disease. It is also known as ME/CFS and still commonly, as chronic fatigue syndrome. ME is what CareNow Ontario will use unless we are quoting from a source using a different terminology. ME has diverse symptoms and impairments, across many body systems, including neurological, immunological, autonomic and energy metabolism. The hallmark symptom is post-exertional malaise (PEM), a delayed (hours or days) exacerbation of symptoms following even minimal effort or activity of any kind.
Other typical symptoms include loss of stamina, debilitating fatigue, cognitive impairment (difficulty thinking or concentrating, ‘brain fog’), unrefreshing sleep, and autonomic manifestations such as orthostatic intolerance. Also common are musculoskeletal and joint pains, headaches and sound, light and chemical sensitivity. Fatigue is only one amongst a wide variety of symptoms.
ME affects many people of all ages, in Canada and worldwide. In Ontario, the number affected in 2016 (the last year for which we have Ontario-specific numbers) was 250,000 or just over 2% of the population (12 and over) with the majority (approximately 65%) of those being women. While these statistics do not include children, there is evidence that ME affects children.
Onset can be sudden, following a viral or other infection but it can also occur more gradually, as well as after other events, such as environmental exposures. ME occurs with a wide range of severity, with some people being ‘relatively’ mildly impacted but still with serious consequences for their quality of life and economic security, unable to undertake daily activities in a consistent manner or to work; while others, estimated to be 25% are severely or very severely affected, often housebound or bedbound.
Researchers are actively working to unravel the causes of ME and to develop effective treatments. Medical schools have not yet incorporated ME into their curriculum, so very few providers have trained to recognize/diagnose or to treat ME; this despite there being accepted diagnostic criteria that are widely available and, even without all the answers, some treatments that can be provided on a symptomatic basis.
There is a significant subset of people with long COVID who share many symptoms of ME, including post-exertional malaise, and are meeting ME case definitions. This is of great significance for both people with long COVID and those with ME. On the long COVID side, many of the treatments that have been offered to provide symptomatic relief for ME may help long COVID. Additionally, armed with knowledge gained from the ME experience, greater caution may be used in applying treatments, such as graded exercise therapy, that have not helped, and in fact have harmed people with ME. And from the ME side, the significant amount of research now ongoing into long COVID may be helpful for ME (and for other conditions such as FM and ES-MCS), should the underlying mechanisms be found to have a common basis.
The need is great, that’s why CareNow Ontario is working to bring care and education into being.
In addition to the information provided here,”The Bigger Picture” section directs you to credible places where you can find even more in-depth information.