by Mary Dimmock, Susan Levine, MD, and Terri L. Wilder, MSW
Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS) or ME/CFS remains an elusive diagnosis to most physicians. There are no simple diagnostic tests or biomarkers, and there are no FDA approved treatments specific to this disease. Clinical guidance has often recommended cognitive behavioral (CBT) and graded exercise therapy (GET), but these therapies are inappropriate and potentially harmful for patients with ME/CFS. In 2015, the Institute of Medicine (IOM, now called the National Academy of Medicine) issued new clinical diagnostic criteria for ME/CFS and summarized the growing evidence of biological impairment. Since then, the National Institutes of Health (NIH) has funded three Centers of Excellence to study ME/CFS, a pediatric ME/CFS primer has been published, and the Centers for Disease Control and Prevention (CDC) has updated its website.
Demographics and Presentation
ME/CFS is believed to affect approximately one million Americans, but actual disease prevalence could be higher. The IOM reported an estimated prevalence of 1 to 2.5 Million Americans, which amounts to 62,000 to 125,000 in New York State (NYS). ME/CFS affects more women than men and affects people of all socioeconomic backgrounds, age range, and ethnic and racial diversity. The IOM report estimated that as many as 84-91% of patients are not diagnosed.
The onset of ME/CFS is often sudden, typically following a viral or other type of infection but may occur following other types of physical trauma. In other cases, the disease may develop gradually. Patients describe feeling `flu-like’ symptoms chronically. In addition to the characteristic post-exertional malaise (PEM), patients may also experience cognitive impairment, unrefreshing sleep, autonomic manifestations, such as heart rate variability and excessive sweating, and also experience muscle and joint pain and sound, light, and chemical sensitivity. Elevated antibody titers to viruses may be present, in addition to low levels of autoimmune serology.
ME/CFS can present with a wide range of severity. Even in the same patient, the level of severity can change over time and from day to day as symptoms wax and wane. People with ME/CFS are unable to go about their daily activities in a predictable or consistent manner. The IOM report states that up to 70% of patients are unable to work and one quarter remain bed- or housebound (the latter however may be an underestimate). The IOM report also states that patients with ME/CFS are more functionally impaired than those with ”type 2 diabetes mellitus, congestive heart failure, hypertension, depression, multiple sclerosis, and end-stage renal disease.” Recovery is rare and as a result, patients can remain ill for decades.
Previously, ME/CFS was considered a diagnosis of exclusion but the IOM criteria provide for the presence of certain “core” criteria in order to make a diagnosis. The IOM clinical diagnostic criteria for ME/CFS require:
A number of co-morbidities can be seen in ME/CFS, the most common of which include fibromyalgia, postural orthostatic tachycardia syndrome (POTS), mast cell disturbances, and certain autoimmune disorders.
A noted above, there are no FDA approved treatments for ME/CFS. However, there are interventions that the physician can provide to help patients with this disease. First and foremost, the physician can explain PEM and the associated aerobic metabolism impairment. For some people, exertion as minor as tooth brushing or eating can trigger PEM and a crash. People with ME/CFS should not exceed their “energy envelope” and they should use an activity management approach called “pacing” to not exceed their limits. Physicians can also prescribe therapies that relieve symptoms, including those for sleep, pain, and orthostatic intolerance, including IV saline and Florinef. For patients with elevated viral titers, antiviral medications can help reduce symptoms. Patients often use earphones, earplugs, sunglasses, and eye masks to relieve sensitivities to light and sound.
Physicians can also support applications for disability. Social security accepts the 2-day CPET as objective evidence to support a disability claim. If this test is not easily available, a thorough explanation that describes the patients’ daily activities may suffice.
Physicians have an important role to play in the diagnosis and care of people with ME/CFS. In May 2017, NYS Commissioner of Health Dr. Howard Zucker sent a letter to physicians encouraging them to include ME/CFS as part of the differential diagnosis when evaluating patients with these symptoms. The clinical diagnostic criteria published by the Institute of Medicine (IOM) are an important tool and can result in faster and more accurate diagnosis. They can also provide the basis for treatment recommendations that can relieve symptoms and minimize post-exertional crashes. Most importantly, the physician can validate the patient’s experience and ensure that the patient is not harmed by inappropriate treatment recommendations.
Mary Dimmock is the parent of a son with ME/CFS. She is a biochemist by training and retired from the pharmaceutical industry. She is on the board of Solve ME/CFS Initiative.
Susan Levine, MD has been seeing ME/CFS patients in her clinical practice for over 30 years. She is Board Certified in Internal Medicine and Infectious Diseases and has served as past Chairperson of the Chronic Fatigue Syndrome Advisory Committee (CFSAC).
Terri L. Wilder, MSW is a volunteer with #MEAction (www.meaction.net) and was diagnosed with ME in March 2016. She received a Master’s in Social Work from the University of Georgia and currently manages a large clinical education program in New York City.