Patients who are tolerating their current level of activity and have learned to “listen to their bodies” might benefit from carefully increasing exercise to improve their physical fitness and avoid deconditioning. For some patients, it might be first necessary to treat orthostatic intolerance and improve patients’ capacities to tolerate being upright before any activity can be considered for careful implementation. However, it is important that patients with ME/CFS maintain activities that they can tolerate since deconditioning is also harmful to patients. Standard exercise recommendations for healthy people can be harmful to patients with ME/CFS. While vigorous aerobic exercise can be beneficial for many chronic illnesses, patients with ME/CFS do not tolerate such exercise routines. For some patients, even daily chores and activities such as cleaning, preparing a meal, or taking a shower can be difficult and may need to be broken down into shorter, less strenuous pieces. If possible, evaluation by a rehabilitation specialist may be beneficial.
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Handout: Managing Post-exertional Malaise (PEM) pdf icon Īny activity or exercise plan for people with ME/CFS needs to be carefully designed based on individual presentation with input from each patient.
Patients need to be advised about “push and crash” cycles: patients sometimes respond to having a “good day” by subsequently doing too much to make up for “lost time,” and then relapsing.
When patients experience improvement, activities can be cautiously increased with monitoring for any negative effects. In general, patients should not push themselves beyond their capacities as this may exacerbate the symptoms and trigger PEM. Healthcare providers need to keep in mind that when patients with ME/CFS exceed their individual capacities, PEM and serious deterioration of function may result. Keeping individual activity and symptom diaries may be helpful to patients in identifying their personal limitations, especially early on in clinical care. Some patients and healthcare providers refer to staying within these limits as staying within the “ energy envelope.” Limitations may be different for each patient. Patients need to determine their individual limits for mental and physical activity, and plan activity and rest to stay within these limits. The goal is to avoid PEM flare-ups and illness relapses by balancing rest and activity. PEM can be mitigated by activity management (pacing). Post-exertional malaise (PEM) is the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks. It is also important to incorporate strategies to prevent worsening of symptoms into initial and subsequent treatment plans. Treatment should be directed toward the most problematic symptoms as prioritized by the patient. Healthcare providers and patients need to establish which symptoms are most disruptive or disabling and tailor management plans accordingly.
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