CHRONIC FATIGUE SYNDROME: A Poorly Understood Condition
By Dr. Anna Fox
It will surprise no reader that the world of medicine has not always had the ability to immediately describe and effectively treat every disease. At various times in our history, seizures were considered the result of divine intervention or demonic possession. Now, they are understood as a dysregulation of nerve signals within the brain. Four thousand years after the first descriptions of seizures were etched in stone in Mesopotamia, a modern example of this thorn-in-the-side of medicine is Chronic Fatigue Syndrome (CFS). As many as 2.5 million Americans are estimated to have this illness. Most are undiagnosed.
A syndrome is a constellation of symptoms. Also known as “myalgic encephalomyelitis,” Chronic Fatigue Syndrome includes impaired function of especially three body systems: nervous, cardiorespiratory and musculoskeletal.
CFS is characterized by a variable combination and severity of the following symptoms:
- Severe fatigue
- Sleep problems
- Pain
- Dizziness
- Blood pressure and heart rate dysregulation
- Problems with concentration and memory
Symptoms may worsen after people with the illness try to participate in their usual activities. This is termed “post exertional malaise.”
CFS is a difficult diagnosis to navigate both as patient and provider. As physicians, we hope to understand illness and offer patients a treatment we trust will significantly improve their quality of life. As patients, we cannot help but expect doctors to understand our illness and tell us how to fix it. This is why it is frustrating to hear statements like, “the cause of CFS is unknown.” Certain triggers have been identified, including previous infection, trauma or significant stress and toxic environmental exposures, however, there is not a single known cause.
In the absence of a definitive diagnostic lab test, a diagnosis of CFS can be difficult to accept. The impaired function caused by CFS is very taxing and, like other chronic debilitating conditions, can contribute to psychological illness such as depression.
Poor understanding of a disease process does not mean nothing can be done about it. Typically, a thorough history, physical examination and lab tests are used to rule out other illnesses whose symptoms intersect with CFS. Then, patients must be empowered through knowledge of what CFS entails and how to address it, with particular care to avoid making patients feel they have been told the equivalent of “it’s all in your head.” When a disease process is not fully understood, this does not mean it is made up.
There are a range of interventions available to be tailored to an individual’s symptoms, such as:
- Planned, time-limited low-exertion activity
- Blood pressure support, such as compression socks, electrolyte hydration, and potentially medications
- Sleep hygiene (routines that allow for quality sleep)
- Physical therapy
- Complementary therapy (e.g. massage)
- Meditation/relaxation
- Memory aids
- Counseling (support, learning tools of coping)
My hope and expectation is that CFS, like seizures and numerous other disorders and diseases before it, will one day be robustly understood and targeted treatment made available. In the meantime, I encourage patients with symptoms of chronic fatigue syndrome to establish regular care with a trusted physician who will guide you through navigating this complex condition.