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Presentation and Clinical Course of ME/CFS

Onset of illness can be either acute or gradual. Acute onset may follow an infectious-like syndrome (e.g., fever, malaise, aching muscles, respiratory or gastrointestinal symptoms) or a specific acute infection (e.g., acute infectious mononucleosis from a new infection with Epstein-Barr virus). The illness also may follow other trauma such as car accidents or surgery. Gradual onset can occur over months or years.

The severity and frequency of the symptoms can vary among patients and can vary for an individual patient. Symptoms can fluctuate during the day, from day to day, and throughout the illness. Some patients may not be obviously ill-appearing during clinical evaluations. However, if patients are severely affected or are having an exacerbation of their symptoms, even visiting a clinic for care might not be feasible at times. Thus, healthcare providers may not see patients when their symptoms are most severe.

Patients frequently experience a substantial impairment in both physical and mental function at some point in their illnesses. Some patients may be wheelchair- or bed-bound for variable periods during the course of their illnesses. They may require significant assistance with activities of daily living, as well as adjustments to or interruption of their employment or education. For some patients, symptoms may diminish or even go into complete remission. However, symptoms can recur.

The spectrum of ME/CFS can range from mild to severe. For example, patients mildly impaired by ME/CFS may be able—with careful planning and activity management—to keep a job or continue their education, participate in social and family activities, and attend to daily life. Those patients who are moderately impaired might, for example, have trouble maintaining a regular work schedule or standing and sitting for prolonged periods. Patients who are severely or very severely affected by ME/CFS include those who are completely wheelchair-dependent and house- or bed-bound for months or even years. Some primarily house-bound patients have increased symptoms after trips for healthcare or after performing daily tasks that healthy people take for granted, such as bathing, showering, and cooking meals. Those who are bed-bound might need assistance performing even these basic tasks.

Disclaimer: The content of this ME/CFS website is for informational purposes only and does not represent a federal guideline or recommendation for the treatment of ME/CFS. The information provided on this website is not intended to be a substitute for the medical judgment of the healthcare provider and does not indicate an exclusive course of action or treatment.

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