Who can diagnose Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)?

Who Can Diagnose ME/CFS

Any clinician with appropriate knowledge of ME/CFS diagnostic criteria can make the diagnosis, though most patients struggle to receive a diagnosis because ME/CFS is not comprehensively taught in medical schools and only 6% of medical schools fully cover ME/CFS across treatment, research, and curricula domains. 1

Current State of Diagnostic Capability

The reality is that 80% of patients struggle to get a diagnosis because doctors have not been taught how to diagnose or treat ME/CFS in medical schools or post-graduate training. 2 This educational gap has created a crisis where:

• Up to 91% of patients in the United States remain undiagnosed 3
• ME/CFS and dysautonomia are frequently absent from electronic health record data due to imperfect coding and lack of clinician recognition 1
• The widespread lack of knowledge of viral-onset illnesses prevents these conditions from being identified and documented by clinicians 1

Who Should Be Diagnosing ME/CFS

Primary Care Physicians

Primary care physicians can and should diagnose ME/CFS when they have appropriate training, as the diagnosis is purely clinical based on history and exclusion of other fatiguing illnesses. 4 However, many primary care physicians share the same degree of uncertainty about the diagnosis as their patients. 5

Specialists with ME/CFS Expertise

Clinicians who specialize in ME/CFS, dysautonomia, and post-viral conditions are best positioned to make accurate diagnoses and should lead diagnostic efforts. 1 These specialists understand:

• The cardinal symptom of postexertional malaise, which distinguishes ME/CFS from other fatigue conditions 6
• Appropriate diagnostic testing beyond standard labs that often return normal results 1
• The overlap with conditions like POTS, where four in five patients receive a psychiatric diagnosis before receiving their correct POTS diagnosis 1

Pediatricians

Pediatricians can diagnose ME/CFS in children and adolescents, though they often lack essential knowledge necessary for diagnosis and treatment, resulting in young patients experiencing symptoms for years before receiving a diagnosis. 4

Critical Diagnostic Requirements

Any clinician diagnosing ME/CFS must recognize these core criteria from the American College of Cardiology:

• Substantial impairment lasting at least 6 months with significant reduction in pre-illness occupational, educational, social, or personal activities 6
• Profound fatigue of new or definite onset that is not substantially alleviated by rest 6
• Postexertional malaise with worsening of symptoms following physical or cognitive exertion, often delayed by hours or days 6
• Unrefreshing sleep that does not restore normal energy or function 6
• Either cognitive impairment (memory, concentration, information processing problems) OR orthostatic intolerance (symptoms worsening upon standing) 6

Common Diagnostic Pitfalls

Clinicians unfamiliar with ME/CFS frequently make these errors:

• Misdiagnosing as psychiatric disorders when ME/CFS is actually a biological illness with neurological and immunological components 6
• Overlooking postexertional malaise, the cardinal symptom that is not widely known and rarely included in evaluations 1, 6
• Misattributing symptoms to deconditioning when ME/CFS involves complex pathophysiology beyond simple deconditioning 6
• Using inappropriate testing such as D-dimer, CRP, and antinuclear antibody tests that often return normal results, instead of tests that detect abnormalities in ME/CFS patients like natural killer cell function tests, tilt table testing, and small fiber neuropathy biopsy 1

Practical Recommendations for Improving Diagnostic Access

Professional societies and government agencies must educate the healthcare workforce on ME/CFS, including the history and current best practices, to ensure people can receive adequate care now. 1 Until this education gap is addressed, patients should seek clinicians who:

• Have specific training or experience with ME/CFS, dysautonomia, and post-viral conditions 1
• Understand that diagnosis requires exclusion of alternative diagnoses through thorough evaluation 6
• Recognize the symptom pattern typically follows viral or bacterial infection in many cases 6
• Know to assess for co-existing conditions including orthostatic intolerance 4

The diagnosis is clinical and does not require specialized equipment, but it does require specialized knowledge that most clinicians currently lack. 4, 2