The Uncertainty and Frustration of the Unknown
Fluctuating Symptoms and Uncertain Prognosis
Overall, prognosis is unknown and studies have been limited by small sample sizes, high dropout rates, short follow-up times, inclusion of patients with other conditions, and inappropriate definitions of recovery. To further complicate things, between 84% and 97% of people with ME develop at least one comorbidity (other illness on top of ME), making it hard to monitor ME symptoms.
Symptoms of both ME and Long-COVID fluctuate over the hours, days and months, with many people gradually stabilizing over time and some getting worse.
Many patients are ill for years or decades but many also have significant periods of remission.
A systematic review concluded that the chance of a full, permanent recovery is about 5% for ME and the estimate is about 8% for people who have had Long-COVID for over a year.
The uncertain prognoses for these illnesses and their sometimes extreme variability over time, can leave patients with feelings of frustration, confusion, an inability to plan for both near and long-term future, and dashed hopes when symptoms worsen.
Cause Unknown
Long-COVID emerges after a COVID-19 infection and 80% of ME patients report onset following a viral illness, but the root cause of these illnesses is unknown.
involvement of the central, peripheral, and autonomic nervous systems; the immune system; cellular metabolism and energy production dysfunction; genetics; and stress affecting body chemistry.
No Tests, No Biomarkers
There are currently no definitive biomarkers or tests for either illness. Doctors and patients must work together to eliminate other possible illnesses and to diagnose ME or Long-COVID by their symptoms. This process is often challenging and frustrating.
No known cures or effective treatments
While various symptoms of both illnesses can be treated to improve quality of life, there is no known cure and no overall, effective treatments. Finding helpful medicines, practices and techniques to manage these illnesses takes time, trial and error, and often causes fear, frustration and even PEM (or “crashes”) from the extra effort and stress.
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