Chronic fatigue syndrome (also known as myalgic encephalomyelitis, or ME/CFS) has long puzzled the medical community. Because of that, many people suffering from this elusive syndrome have not found adequate answers or treatment for their condition. (In part because its very existence was debated!) While recommended treatments have changed drastically over the years, there is still no singular treatment that physicians can point to as a proven treatment for this syndrome. And now, due to the emergence of COVID-19 and “long COVID”, a spotlight is again shining on this condition.
What is chronic fatigue syndrome?
Chronic fatigue syndrome is a cluster of symptoms including severe or debilitating fatigue that does not improve with rest, and is not caused by any other disease or syndrome (1, 2, 3). It is most common in young or middle-aged adults, although children, adolescents, and older adults can also experience it. Other symptoms are wide-ranging, including (1, 2, 3):
Trouble sleeping and/or poor sleep quality
Thinking and concentration problems
Muscle and joint pain
Enlarged lymph nodes
Extreme exhaustion after physical or mental activity (also called post-exertional malaise)
Sensitivity to light, sound, or chemicals
Gastrointestinal disturbances (nausea, bloating, diarrhea, constipation)
Changed ability to complete daily tasks, school, or work
As more is understood about this syndrome, the criteria have been honed in. The new diagnostic criteria specifically includes “substantial impairment in activity that lasts six months or more and is accompanied by fatigue, post-exertional malaise (PEM), unrefreshing sleep, and either cognitive impairment or orthostatic intolerance” (3).
The CDC estimates that up to 2.5 million people may suffer from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), with the possibility that up to 90% of those who suffer from this syndrome remain undiagnosed (1). Interestingly, ME/CFS is much more common in women, which aligns with the greater prevalence of other inflammation-related autoimmune diseases in females (1).
Unfortunately, many people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) also have one or more underlying comorbidities (3). These comorbidities often overlap with the symptoms commonly found in ME/CFS, including fibromyalgia (muscle pain and poor sleep), postural orthostatic tachycardia syndrome (or POTS), IBS, gastroparesis, and vagal nerve dysfunction, to name a few. Even conditions such as depression, mast cell disorders, or Ehlers Danlos Syndrome can occur alongside ME/CFS (3).
What causes this syndrome? What makes it so complex to diagnose and treat?
Since the cause of this syndrome is still unknown, it creates a very complex