Clinical Care of Patients with ME/CFS

There are no confirmatory tests, cures, or drugs approved by the U.S. Food and Drug Administration (FDA) specifically for ME/CFS. While some patients and healthcare providers have reported improvement in ME/CFS after the use of off-label or unlicensed medications, the efficacy of these medicines has not been tested in multiple, large, well-controlled clinical trials. Patients benefit from talking with their healthcare providers about potential therapies, including the risks and expense of unproven treatments. Patients also benefit from thorough medical evaluations and good clinical care.

Care focuses on alleviating symptoms through both pharmaceutical and non-pharmaceutical interventions and guiding patients through self-managementexternal icon. While there are no medications specifically licensed for the treatment of ME/CFS, there are drugs licensed for the treatment of some co-morbid conditions.

Helping patients get relief from symptoms and achieve improvement in quality of life are the main goals of treatment. In working toward these goals, it is important to prevent harm that can occur from triggering post-exertional malaise. It is also important to acknowledge the clinical significance of the condition and to validate the experience and concerns of patients and their loved ones. This acknowledgment often brings patients and families a sense of support and strengthens trust between patients and providers.

To care for patients with ME/CFS, healthcare providers experienced in managing this illness typically develop an individualized treatment plan as a team effort between patients and their providers, as well as caregivers and loved ones. This individualized treatment program that best meets the needs of the patient is re-evaluated periodically based on each patient’s progress. Each patient’s program typically includes a combination of:

• Therapies to address symptoms
• Techniques to help patients cope
• Strategies to manage daily activities

ME/CFS affects patients in different ways, and treatment plans should be tailored to address symptoms that are most disruptive or disabling for each patient. It is best to proceed slowly. Expecting patients to return to usual activities should not be the initial management goal because physical and mental exertion can aggravate symptoms and debilitate patients. An important strategy for patients to learn is how to manage their activities to avoid triggering post-exertional malaise (PEM). This is often referred to as activity management (also sometimes called pacing) and requires that patients learn to “listen to their bodies” to be aware of their individual exertional limits, aiming to remain as active as possible without exceeding them. Clinical experts have observed that this process requires “trial and error.”

Since ME/CFS can be unpredictable and can change over time, evaluation of each patient’s condition at scheduled intervals is warranted. As with many chronic illnesses, the length of intervals between visits might vary from patient to patient and depends on the severity and degree of symptom improvement and control. The scheduled re-evaluations serve as opportunities to adjust the treatment strategies as needed based on patient status. While it may take some time to experience an improvement and not all patients may improve significantly, it is important to communicate to patients that improvement is possible.

Because ME/CFS is a complicated illness, its management may require input from a variety of medical professionals, such as rheumatologists, neurologists, or infectious disease specialists. Primary care providers can develop effective treatment plans. ME/CFS treatment plans vary, as they are developed with input from patients, caregivers, and clinical care teams. When expertise is available and accessible, these plans can sometimes be enhanced through collaboration with a team of other health care professionals.

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.