What is ME?
What is Long-COVID?
What are Myalgic Encephalomyelitis (ME) and Long-COVID (LC)?
ME and Long-COVID are both complex, chronic, multi-system illnesses that can seriously impact quality of life. Both are considered part of a larger family of post-viral illnesses:
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80% of ME cases clearly came after a viral illness; for 20% of patients, the trigger is uncertain and may have followed some other type of trauma or simply come on gradually.
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Long-COVID is defined as symptoms and conditions that continue or develop after a probable or confirmed case of COVID-19.
The main hallmark symptom of both illnesses is post exertional malaise (PEM), an immediate or delayed worsening of symptoms that may occur even after minimal physical, emotional, cognitive or sensory exertion.
Along with PEM, the other main symptom of both ME and LC are:
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extreme fatigue that is not improved by rest
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Cognitive impairment, such as problems with memory, concentration, thinking or speaking
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Unrefreshing sleep and disturbed sleep
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Orthostatic intolerance such as lightheadedness, dizziness, and passing out
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Some with Long-COVID have experienced permanent organ damage and many also have chronic coughs, shortness of breath, and chest pain, not usually experienced by those with ME
Both illnesses can have a long list of other symptoms, including pain, gastrointestinal issues and others, and both have several common comorbidities (including Fibromyalgia).
Living with ME/Long-COVID
While ME and Long-COVID are not the same, they have heavily overlapping triggers, symptoms, illness management strategies (care and treatments), and impacts on life.
In fact, nearly half of patients with Long-COVID meet the diagnostic criteria for ME.
For both illnesses, even a mild case can result in a substantial loss of physical and/or cognitive function. Mild disease can result in a reduction of 50% of pre-illness function. Severe patients can be bedridden for months or years, struggling to perform basic daily living tasks.
Both ME and Long-COVID symptoms often fluctuate from day to day, or across weeks and months.
While some people do experience worsening symptoms over time, illness management strategies, and especially Pacing, can stabilize symptoms and even improve general function and overall quality of life.
While there is no known cure for either illness. It is estimated that up to 5% of people with ME and 8% of those with Long-COVID for at least a year fully recover.
Who gets ME/Long-COVID?
In BC, there are an estimated 87,000 people with ME and 118,000 people with Long-COVID that has lasted over a year.
Onset of both illnesses can occur in children and adults, with the prevalence being in women and the average age of onset being middle age.
Diagnosis
Despite the high prevalence and disabling nature of these illnesses, medical education programs rarely cover these illnesses and guidance for practicing clinicians is often outdated and inappropriate.
Standard tests typically return normal results, and some clinicians are wholly unaware of or question the legitimacy of ME and Long-COVID.
Consequently, up to 91% of affected people are undiagnosed or misdiagnosed with other conditions, such as depression.
To obtain a diagnosis, patients frequently have had to see multiple clinicians over a number of years.
Videos
A 6 minute informative introduction from the Bateman Horne Centre
Pain BC Podcast