My name is Dr Elizabeth Unger and I am chief of CDC’s Chronic Viral Diseases Branch, which houses the myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) program.
An estimated 836,000 to 2.5 million Americans suffer from ME/CFS, a serious, long-term illness that can severely impair the ability of those affected to live normal lives. But the majority of those affected are not diagnosed, and many struggle with symptoms for years before receiving a diagnosis.
The absence of a definitive diagnostic test contributes to this problem. In addition, most medical schools in the United States do not include ME/CFS in their physician training.
Less than one third of medical school curricula and less than half of medical textbooks in the United States address ME/CFS, so many healthcare providers need more information about this condition.
When I meet with those living with ME/CFS and their loved ones, the overarching concern that I hear is the difficulty finding good healthcare from informed and compassionate providers.
To address this need, we released an updated CDC website about ME/CFS for healthcare providers in July 2018. The new site was designed specifically with clinicians in mind. It offers information about how clinicians can better assess and help their patients manage this illness.
The new content includes:
- Presentation and clinical course of ME/CFS;
- Prognosis, epidemiology, and possible causes of ME/CFS;
- Diagnostic criteria for ME/CFS, released in 2015; and
- Proposed approach to caring for people who have been diagnosed with ME/CFS.
ME/CFS is a complex, chronic, debilitating illness with systemic effects. It’s characterized by reduced ability to perform activities that were well tolerated pre-illness, accompanied by profound fatigue not improved by rest, and lasting for more than 6 months.
A hallmark of ME/CFS is that symptoms can worsen after physical, mental, or emotional effort, a manifestation known as postexertional malaise. Patients with ME/CFS also have unrefreshing sleep.
Other common symptoms are orthostatic intolerance, cognitive impairment, and pain. As can be observed in people with other long-term chronic illnesses, secondary psychological symptoms such as depression and anxiety may also be present in some patients with ME/CFS.
ME/CFS is a biological illness, not a psychological disorder. Patients with ME/CFS are neither malingering nor seeking secondary gain. These patients have a variety of abnormalities that affect multiple systems, such as:
- Immune and neuroendocrine;
- Cellular metabolism; and
- Autonomic system regulating blood pressure and heart rate.
A healthcare provider can make the diagnosis of ME/CFS based on a thorough medical history and physical examination, as well as a targeted workup with screening laboratory tests for other fatiguing illnesses.
While there are currently no diagnostic or confirmatory tests, or US Food and Drug Administration–approved drugs specifically for the treatment of ME/CFS, patients benefit from a thorough medical evaluation and good clinical care. Helping patients achieve relief from symptoms and improved quality of life are the main goals of treatment.
In working toward these goals, it’s important to prevent harm that can occur from triggering postexertional malaise. It’s also vital to acknowledge the clinical significance of the condition and to validate the experience and concerns of patients and their loved ones. This acknowledgement often brings patients and families a sense of support and strengthens trust between patients and providers.
It is important to emphasize that anyone can develop ME/CFS. While it is more common in women, and most common in people between 40 and 60 years of age, the illness affects children, adolescents, and adults of both sexes and all ages.
Besides information for healthcare providers, the updated ME/CFS website lists resources for families, patients, and schools, including patients’ personal accounts of living with ME/CFS, called Voice of the Patient.
We invite you to review the information on the website and hope that it will help ensure that clinicians like yourself are informed about how to recognize and manage this debilitating illness. You can provide timely diagnosis and appropriate care for patients with ME/CFS. Thank you.