Fluctuating illness

A fluctuating illness

ME/CFS
The CDC describes ME/CFS as a fluctuating illness.

In the London criteria for myalgic encephalopmyelitis, fluctating symptoms are one of the five compulsory disagnostic criteria]: "'Fluctuation of symptoms, from hour to hour and day to day'"

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.

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. Read more about the care of severely ill patients. The International Consensus Criteria states: "There may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour. Consider activity, context and interactive effects."

The ICC also states that in ME "prominent symptoms tend to vary rapidly and dramatically."

Severe ME
A small study of severe ME/CFS described symptoms as fluctuating and unpredictable, with severe and very severe ME having severe symptoms ever day, and only some patient having very brief moments in which they could do "normal activities": "'At best, energy fluctuations allow individuals to experience only fleeting moments of 'normal'. For example, Jane stated she was active for 2% of the day when she washed and toileted, whereas Lorraine was completely bedbound and dependent on assistance just to sit up in bed.'"

Notable articles

 * 2011, Symptom fluctuations and daily physical activity in patients with chronic fatigue syndrome: a case-control study - (Full text)