How is ME/CFS diagnosed?

ME/CFS often resembles other illnesses, including Lyme disease, multiple sclerosis, mononucleosis, primary depression, mitochondrial disease and lupus.

In medicine, a "syndrome" is a set of signs and symptoms that occur together in a medical condition. For instance, AIDS is Acquired Immunodeficiency Syndrome, and until infection by the HIV virus was discovered to be the cause, diagnosis of AIDS was made solely by a collection of signs and symptoms. (In medicine, a "sign" is something that can be objectively measured by a physician and a "symptom" is something subjective experienced by a patient, such as severity of pain.)

In the 1980s, a number of U.S. physicians noticed what seemed to be an emerging syndrome. The Centers for Disease Control and Prevention (CDC) were called in to investigate an outbreak in the Lake Tahoe, Nevada area. Later the CDC convened a committee to come up with a research definition of the syndrome using signs and symptoms. This is now known as the 1988 CDC definition and the illness was named the Chronic Fatigue Syndrome (CFS).

In 1994, the CDC came up with a new research case definition, which loosened the requirements for diagnosis with ME/CFS. This is known as the 1994 CDC definition. Both definitions were intended to be used by researchers, to make sure their research subjects all had the same illness.

Unfortunately, it has been shown that the 1994 requirements were loosened too much compared to the 1988 definition, and people with other illnesses (including depression) were being mistakenly diagnosed as having ME/CFS. This has created major problems for the ME/CFS research results of the last 20 years, since in studies some of the subjects didn't have ME/CFS, but were mixed in with those who did. (See " Critique of the 1994 CDC definition " and the discussion "Are the illnesses described by the 1988 and 1994 CDC definitions the same?") 

Later a Canadian, Dr. Carruthers, led an international team of clinicians to come up with a definition of ME/CFS to be used by physicians who regularly see patients. This was published in 2003 under the auspices of the Canadian Ministry of Health.

This 2003 Canadian definition is what the physician authors of the Primer suggest be used for diagnosing ME/CFS. Unfortunately, the definition is complex. We will give a summary below. For more detail, see the article 2003 Canadian definition and pp. 43-44 of the ME/CFS: A Primer for Clinical Practitioners. All quotations below are from the original medical paper.¹

2003 Canadian case definition of ME/CFS

The definition first requires that other illnesses which could explain a patient's symptoms be ruled out. 

To have ME/CFS, a patient must meet all four of these criteria:

• "the criteria for fatigue, post-exertional malaise and/or fatigue, sleep dysfunction, and pain" explained below
• "have two or more neurological/cognitive manifestations"
• "one or more symptoms from the categories of autonomic, neuroendocrine and immune manifestations"
• "the illness persists for at least six months usually having a distinct onset, although it may be gradual." A "preliminary diagnosis may be  possible earlier."

Thus, to be diagnosed the person must qualify under each and all of the following symptom categories:

• "Fatigue: The patient must have a significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that reduces activity level. Three months is appropriate for children."

• "Post-exertional malaise...There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post-exertional malaise...and/or pain and a tendency of other associated symptoms within the patient's cluster of symptoms to worsen. There is a pathologically slow recovery period—usually 24 hours or longer."

• Sleep dysfunction: There is non-restorative sleep or decline in sleep quantity or dysregulation of normal sleep rhythms.

• Pain. "There is a significant degree of myalgia." The word means muscle pain, and is often the type of deep muscle pain experienced during the flu. "Pain can be experienced in the muscles/joints, and is often widespread and migratory in nature." There are often headaches of a "new type, pattern or severity."

• "Neurological/Cognitive Manifestations"—To qualify in this category two or more of the listed symptoms must be present. Please see the specific list of symptoms in the actual document. They are grouped into:

  a) cognitive deficits including problems with memory, information processing, difficulties with thinking, and perceptual disturbances

  b) more classical neurological symptoms, including difficulty walking and muscle weakness; sensory hypersensitivity, including lower threshold for emotional overload.

• "Autonomic, Neuroendocrine and Immune Manifestations"—To qualify under this category the patient must have at least one symptom from two of the following three subcategories. Often a patient will have multiple symptoms:

  a) "Autonomic Manifestations: orthostatic intolerance, neurally-mediated hypotension; postural orthostatic tachycardia; light-headedness; extreme pallor; nausea and irritable bowel syndrome; urinary frequency and bladder dysfunction; difficulty breathing upon exertion; palpitations with or without cardiac arrhythmias."

  b) "Neuroendocrine Manifestations: loss of thermostatic stability—subnormal body temperature...sweating episodes, recurrent feelings of feverishness and cold extremities; intolerance of heat and cold, marked weight change—anorexia or abnormal appetite; loss of adaptability and worsening symptoms with stress."

  c) "Immune Manifestations: tender lymph nodes, recurrent sore throats, recurrent flu-like symptoms, general malaise, new sensitivities to food, medications and or chemicals."

Reference

1. Carruthers et al. "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Definition, Diagnostic and Treatment Protocols," Journal of Chronic Fatigue Syndrome 11, No. 1 (2003): 18-126.