ME/CFS

February 16, 2012 by Dr. Kristi Wrightson

What is ME/CFS?

ME/CFS is the acronym for Myalgic Encephalomyelitis or Myalgic Encephalopathy / Chronic Fatigue Syndrome, a condition that has never been properly named. The disease has had many names, including: post-viral fatigue syndrome, low natural killer cell disease, chronic Epstein-Barr virus syndrome, chronic fatigue and immune dysfunction syndrome (CFIDS), and the insulting Yuppie flu. (To learn more about this history, read "A Disease in Search of a Name: The History of CFS and the Efforts to Change Its Name")

None of these names captures the diverse symptoms that people who suffer from this complex disorder experience. Yes, people with ME/CFS experience fatigue, but they are also prone to memory loss, cognitive functioning problems, sleep disturbances, headaches, depression, muscle and joint pains, low-grade fever and a multitude of other symptoms. Even the word fatigue does not accurately capture the debilitating nature of the exhaustion these people experience. Their fatigue is severe enough to significantly limit their ability to work, go to school, participate in social activities and take care of their personal needs - and is not relieved by bed rest or sleep.

While all diagnosed ME/CFS patients are "functionally impaired by definition," according to the Centers for Disease Control, the CDC studies indicate the illness can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, chronic obstructive pulmonary disease, or end-stage (terminal) renal failure.

ME/CFS is also a relapsing, remitting illness that often follows a cyclical course. Typically the ME/CFS patient's fatigue is made worse by either physical or mental activity, so that giving in to the temptation to overdo is repaid by "post-exertional malaise" (extreme, prolonged exhaustion and a worsening of symptoms following physical or mental exertion). The worse the illness, the less activity is possible. Indeed, the first means of testing objectively for ME/CFS may be a "Two-day Exercise Test" demonstrating diminished cardiopulmonary capacity in patients on the day following an initial exercise test.

Because of the difficulties surrounding the diagnosis of this condition, some physicians have suggested that the condition is imaginary or the result of depression or other mental disorder. Research, however, supports that ME/CFS is a real physiological condition that causes a substantial amount of suffering and is not a form of psychiatric illness or depression.

ME / Chronic Fatigue Syndrome Symptoms

The symptoms of ME/CFS are variable and unique to each sufferer. The overriding symptom is one of debilitating unexplained fatigue that lasts longer than six months. This fatigue significantly reduces activities of daily living including work, school, social, and personal activities. The fatigue is made worse by any exertion and not relieved by rest.

Other primary symptoms may include:

• Post-exertional malaise lasting more than 24 hours.
   
• Non-refreshing sleep and difficulties including insomnia and oversleeping.
   
• Headaches of a new type or severity
   
• Muscular pain, morning stiffness
   
• Multi-joint pain (without redness or swelling)
   
• Cervical (neck) or axillary (armpit) lymph node tenderness and swelling
   
• Sore throat, chronic cough
   
• Persistent low-grade fever
   
• Problems with short-term memory or concentration.

Along with these primary symptoms, people with ME/CFS can also experience:

• Gastric disturbances including irritable bowel syndrome, diarrhea, nausea.
   
• Psychological problems, including depression, irritability, mood swings, anxiety, and panic attacks.
   
• Night sweats.
   
• Allergies or sensitivities to foods, odors, chemicals, medications or noise.
   
• Some people have dizziness, dry eyes or mouth, earaches, irregular heartbeat, jaw pain, shortness of breath, and weight loss

The best-known symptom of ME/CFS is fatigue. However, the fatigue of ME/CFS is nothing like the fatigue most people experience at the end of a long day or following a strenuous workout. The Centers for Disease Control (CDC) describes the fatigue of ME/CFS as “severe, incapacitating, and all-encompassing.” In fact, the fatigue people with ME/CFS experience is so severe that it significantly limits their ability to work, go to school, participate in social activities and take care of their own personal needs. The most severe cases can leave patients housebound or bedridden.

A key component of ME/CFS fatigue is post-exertional malaise. This is extreme, prolonged exhaustion and a worsening of symptoms following physical or mental exertion. The symptom exacerbation usually begins 12 to 48 hours after the exertion and requires an extended period of recovery. Other fatigue characteristics ME/CFS patients describe include feeling like they have the flu all the time, a feeling of heaviness in their limbs, and low energy levels accompanied by a feeling of over-stimulation.

Another defining factor of the fatigue of ME/CFS is that it is not relieved by sleep. Patients may awaken feeling just as fatigued as they did before they went to sleep. Because getting good, deep, refreshing sleep is essential for the body to replenish itself, healthcare professionals will often address sleep issues first. If sleep problems can be corrected, fatigue symptoms should begin to improve as well.