Why an accurate diagnosis is important

  • To be sick and not know what the problem is makes it impossible to know what is happening. It is like being lost without a map.
  • By identifying the illness, the patient will know what treatments are available and how to obtain help in coping with ME/CFS.

Symptoms

The most immediate and ongoing experience with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is its symptoms. Unlike many other illnesses,it has different symptoms that may change from day to day, week to week, and month to month.  Identification of an ongoing and coherent pattern and clustering of symptoms is an important element in making a diagnosis. As a patient, it is very helpful to see and understand that the number and types and symptoms that you have are, in fact, common to other patients with ME/CFS. It has been shown recently that which symptoms predominate in a patient is influenced by how long since the illness started. It appears that the illness changes it character somewhat after some years. 

Here is an extensive list of ME/CFS symptoms which has been drawn up by several international experts on the illness.

Most common ME/CFS symptoms

  • Exhaustion, made worse by physical exercise (100%)
  • Low-grade fever in early stages (60-95%)
  • Recurrent flu-like illness (75%)
  • Frequent pharyngitis (sore throats) (50-75%)
  • Joint and muscle pain (65%)
  • Severe muscle weakness (40-70%)
  • Stiffness (50-60%)
  • Post-exertional fatigue & flu-like symptoms (50-60%)
  • Multiple sensitivities to medicines, foods, and chemicals (40-60%)
  • Severe nasal & other allergies (often with worsening of previous mild allergies) (40-60%)
  • Frequently recurring, difficult to treat respiratory infections (40-60%)
  • Dyspnea (labored breathing or hunger for air) on exertion
  • Painful lymph nodes (especially in the neck and under arms) (30-40%)

Neurological Symptoms

  • Sleep disorders & unrefreshing sleep (50-90%)
  • Headaches (35-85%)
  • Visual blurring (50-60%)
  • Intolerance of bright lights
  • Parasthesias (numbness or tingling feelings) (30-50%)
  • Dizziness/ Lightheadedness (30-50%)
  • Ringing in the ears
  • Impaired cognition (50-85%), which may include:
    • Attentional difficulties
    • Calculation difficulties
    • Memory disturbance
    • Spatial disorientation
    • Saying the wrong word

Other Symptoms

  • Worsening of premenstrual symptoms (70% of women)
  • Nocturia (excessive urination during the night) (50-60%)
  • Tachycardia (abnormal rapid heart action) (40-50%)
  • Chest pain (25-40%)
  • Cough (30-40%)
  • Weight gain (50-70%)
  • Nausea, especially in earlier stages (50-60%)
  • Diarrhea, intestinal gas or irritable bowel (50%)
  • Intolerance of alcohol
  • Night sweats (30-50%)
  • Dry eyes (30-40%)
  • Dry mouth (30-40%)
  • Rash (30-40%)
  • Frequent canker sores (30-40%)
  • Herpes simplex or shingles (20%)
  • Symptoms worsened by extremes in temperature

(Statistics compiled from data on CFS patients by: Paul Cheney MD, Anthony Komaroff MD, Charles Lapp MD, Daniel Peterson MD)

What is a syndrome?

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 early 1980s, a number of U.S. physicians noticed what seemed to be an emerging syndrome. The Centers for Disease Control and Prevention (CDC) was called in to investigate an outbreak in the Lake Tahoe, Nevada area. The CDC later 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 ME/CFS: A Primer for Clinical Practitioners as well as many other internationally known ME/CFSD clinicians suggest be used for diagnosing ME/CFS.