Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management

Abstract

Despite myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) affecting millions of people worldwide, many clinicians lack the knowledge to appropriately diagnose or manage ME/CFS. Unfortunately, clinical guidance has been scarce, obsolete, or potentially harmful. Consequently, up to 91% of patients in the United States remain undiagnosed, and those diagnosed often receive inappropriate treatment. These problems are of increasing importance because after acute COVID-19, a significant percentage of people remain ill for many months with an illness similar to ME/CFS. In 2015, the US National Academy of Medicine published new evidence-based clinical diagnostic criteria that have been adopted by the US Centers for Disease Control and Prevention. Furthermore, the United States and other governments as well as major health care organizations have recently withdrawn graded exercise and cognitive-behavioral therapy as the treatment of choice for patients with ME/CFS. Recently, 21 clinicians specializing in ME/CFS convened to discuss best clinical practices for adults affected by ME/CFS. This article summarizes their top recommendations for generalist and specialist health care providers based on recent scientific progress and decades of clinical experience. There are many steps that clinicians can take to improve the health, function, and quality of life of those with ME/CFS, including those in whom ME/CFS develops after COVID-19. Patients with a lingering illness that follows acute COVID-19 who do not fully meet criteria for ME/CFS may also benefit from these approaches.

Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

“…A mildly affected patient may be able to work or attend school with accommodations while the most severely affected patient may be bedbound and need total care. This spectrum of severity is described in Table 1: [12,18,19].…”

“…Updated ME/CFS clinical guidance has been published but these have primarily focused on the less severely ill or on children [11][12][13][14][15]. This article combines the published information available on severe and very severe ME in these and other sources [8,10,16,17] with the authors' experiences with this subgroup of patients and their caretakers.…”

“…In addition to the diagnostic approaches used for all ME/CFS patients [1,12,13,28,29], the following assessments are particularly important for the person with severe or very severe ME/CFS [8,10,13,14,16,17,30]: Evaluate the patient's basic and instrumental activities of daily living (ADLs and IADLs) (Table 2). Documenting ADLs has the added benefit of supporting applications for disability.…”

“…These could include over-exertion resulting in PEM, untreated orthostatic intolerance, pain, sleep difficulties, gastrointestinal issues, unrecognized sensory hypersensitivities, recurrent infections, comorbidities, or complications from being homebound or bedbound. Each symptom should be assessed individually to determine whether it is the result of another specific diagnosis that needs to also be treated [8,12,13,16].…”

“…Ensure the patient and caregiver understand post-exertional malaise. Educate them about energy conservation strategies, such as pacing, to minimize the physical, mental, orthostatic, and emotional stressors that could trigger post-exertional malaise with its consequent worsening of symptoms and functioning [11][12][13]37].…”