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:
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.
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:
extreme fatigue that is not improved by rest
Cognitive impairment, such as problems with memory, concentration, thinking or speaking
Unrefreshing sleep and disturbed sleep
Orthostatic intolerance such as lightheadedness, dizziness, and passing out
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
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.
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illnesses, medical education programs rarely cover these illnesses and guidance for practicing clinicians is often outdated and inappropriate.
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.