Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: what every family
physician needs to know, by Mary Dimmock, Susan Levine, MD, and Terri L. Wilder, MSW in Family Doctor (journal of New York State Academy of Family Physicians) Winter 2018 6:3 pp 23-25
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, over a period of weeks or months. Patients describe feeling `flulike’
symptoms chronically. In addition to the characteristic postexertional 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 stated 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 stated 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.” Caring for severely disabled patients can put an enormous fiscal and emotional strain on family members and other caretakers.
Recovery is rare and as a result, patients can remain ill for decades. The IOM report estimated burden on the American economy is $17-24 billion annually in lost productivity and in direct medical costs.
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 the diagnosis of this disease.
The IOM clinical diagnostic criteria for ME/CFS require:
- A substantial impairment in ability to engage in activity that lasts
six months or more, is accompanied by fatigue, is not lifelong, is
not the result of ongoing exertion and is not alleviated by rest
- Post-exertional malaise
- Unrefreshing sleep
- At least one of cognitive impairment or orthostatic intolerance
Sleep studies may identify co-morbid sleep apnea whereas the results of a tilt table test can confirm the presence of Postural Orthostatic Tachycardia Syndrome (POTS).
Neuropsychiatric testing typically shows impaired working memory and slowed information processing. Querying the patient’s response the day after activities that were previously tolerated can help determine the presence of post-exertional malaise (PEM).
The 2-day cardiopulmonary test (CPET) is used to measure anaerobic threshold, which is reduced in this disease and confirms the seminal finding of PEM.
A number of co-morbidities can be seen in ME/CFS, the most common of which include fibromyalgia, POTS, mast cell disturbances, and certain autoimmune disorders. These will need to be managed as appropriate for each condition.
A noted above, there are no FDA approved treatments for ME/CFS. However, there are interventions that the family physician can provide to help patients with this disease. First and foremost, the family physician can explain post-exertional malaise 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.
Family 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 the sensitivities to light and sound. Family physicians can also support patients by explaining the disease to the family and supporting 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 from the clinician caring for a patient with ME/CFS that describes the patients’ daily activities may suffice.
Family physicians have an important role to play in the diagnosis and care of people with ME/CFS. In May 2017, New York State Commissioner of Health Dr. Howard Zucker sent a letter to NYS 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 in this differential diagnosis that can result in faster and more accurate diagnosis. They can also provide the basis for treatment recommendations that can relieve symptoms and minimize postexertional crashes.
Most importantly, the family physician can validate the patient’s experience and ensure that the patient is not harmed by inappropriate treatment recommendations for exercise or talk therapy intended to convince the patient they are not ill.