(Health Secrets) More than a million Americans have been diagnosed with chronic fatigue syndrome. Millions more are undiagnosed and just dragging through their lives trying to make it from day to day. If you are one of these people, the following series of articles on recovering from chronic fatigue is for you. These articles offer real help and numerous resources. And YES, you really can recover from chronic fatigue! Let’s get started right now by understanding what chronic fatigue really is.
Chronic fatigue has many names
Chronic fatigue can be referred to as:
- CFS – Chronic Fatigue Syndrome
- CFIDS – Chronic Fatigue Immune Dysfunction Syndrome
- ME – Myalgic Encephalitis (used in Canada, Europe and much of the rest of the world)
Myalgic encephalitis literally means muscle pain with inflammation of the brain. While the ME name does not capture all of what this disease is, it certainly is more appropriate than the term chronic fatigue. However, in the US, the vast majority of health care personnel will refer to the illness as chronic fatigue syndrome.
What is chronic fatigue syndrome ?
The criteria for diagnosing chronic fatigue is as variable as the name. The Centers for Disease Control (CDC) refers to the illness as chronic fatigue syndrome, and has perhaps the weakest and most ambiguous criteria.
Chronic fatigue syndrome Case Definition (CDC): Chronic fatigue syndrome (CFS) is a debilitating and complex disorder characterized by intense fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. People with CFS most often function at a substantially lower level of activity than they were capable of before the onset of illness. The cause or causes of CFS have not been identified and no specific diagnostic tests are available. Therefore, in order to be diagnosed with chronic fatigue syndrome, a patient must satisfy two criteria:
1. Have severe chronic fatigue for at least six months or longer with other known medical conditions (whose manifestation includes fatigue) excluded by clinical diagnosis
2. Concurrently have four or more of the following symptoms: post-exertional malais, impaired memory or concentration, unrefreshing sleep, muscle pain, multi-joint pain without redness or swelling, tender cervical or axillary lymph nodes, sore throat, headache. The symptoms must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue.
Unfortunately, this definition is so vague that many people end up with the diagnosis because their doctors lack real knowledge of it or are unable to rule out other problems. The ability to rule out other problems is central to a correct diagnosis of chronic fatigue syndrome. Instead, doctors commonly run a few tests, tell you that you are “normal” because lab work and other tests say you are, and send you out the door with a diagnosis of chronic fatigue, when in fact, you may have a more treatable or curable problem.
Another serious problem with the CDC criteria is that it is very close to a psychiatric disorder called Somatization Disorder. In fact, the definitions have so much overlap that many physicians dismiss chronic fatigue as nothing more than a psychiatric illness.
Finally, the term syndrome alone does a disservice to those with chronic fatigue. Syndromes are a cluster of symptoms known to frequently appear together but with no known cause. A disease is a process with a known cause, identifiable symptoms and anatomic changes. While the term syndrome should imply that the medical community simply hasn’t figured a problem out yet, in reality doctors tend to trivialize anything with the word syndrome in it, believing it is not as valid, important or disabling as a real disease.
The Canadian criteria is much more specific, and a recent worldwide meeting of specialists urged a global adoption of a similar criteria along with global adoption of the term ME while getting rid of the CFS terminology. The US has yet to address any of this although many prominent American doctors and scientists were on the panel.
From the Canadian Consensus Document: A patient with ME/CFS will meet the criteria for fatigue, post-exertional malaise, sleep dysfunction, and pain; have two or more neurological/cognitive manifestations and one or more symptoms from two of the categories of autonomic, neuroendocrine and immune manifestations; and the condition has persisted for at least six months. It includes:
1. Fatigue: The patient must have a significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.
2. Post-exertional Malaise and/or Fatigue: An inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post-exertional malaise and/or fatigue and/or pain and a tendency for other symptoms to worsen. The recovery period is pathologically slow-usually 24 hours or longer.
3. Sleep Dysfunction: Unrefreshing sleep or sleep quality, or rhythm disturbances such as reversed or chaotic sleep rhythms.
4. Pain: A significant degree of pain, which can be in the muscles and/or joints, and is often widespread and migratory. Often, there are headaches of a new type, pattern or severity.
5. Two or more of the following neurological/cognitive manifestations: * Confusion * Impairment of concentration and short-term memory consolidation * Disorientation * Difficulty with information processing * Categorizing and word retrieval * Perceptual and sensory disturbances (such as spatial instability and disorientation, inability to focus) * Ataxia (inability to coordinate muscular movement), muscle weakness or twitching * Cognitive, sensory or emotional overload, which may cause a crash or anxiety.
6. At least one symptom from two of the following categories:
- Autonomic manifestations, including: neurally mediated hypotension, postural orthostatic tachycardia syndrome, delayed postural hypotension, light-headedness, pallor, nausea and irritable bowel syndrome, urinary frequency and bladder dysfunction, palpitations with or without cardiac arrhythmias, exertional dyspnea (difficult or labored breathing)
- Neuroendocrine manifestations, including: subnormal body temperature and marked temperature fluctuation, sweating episodes, recurrent feelings of feverishness and cold extremities, intolerance of extreme heat or cold, marked weight change (anorexia or abnormal appetite), loss of adaptability and worsening of symptoms with stress.
- Immune manifestations, including: tender lymph nodes, recurrent sore throat, recurrent flu-like symptoms, general malaise, or new sensitivities to food, medications and/or chemicals.
7. Illness persists for at least 6 months: Onset is usually distinct but may be gradual. In children, only 3 months is needed for a diagnosis. To be included, the symptoms must have begun or have been significantly altered after the onset of this illness. It is unlikely that a patient will suffer from all the symptoms in criteria 5 and 6. The disturbances tend to form symptom clusters that may fluctuate and change over time.
Exclusions: Exclude active disease processes that explain most of the major symptoms of fatigue, sleep disturbance, pain, and cognitive dysfunction. It is essential to exclude certain diseases, which would be tragic to miss: Addison’s disease, Cushing’s Syndrome, hypothyroidism, hyperthyroidism, iron deficiency, other treatable forms of anemia, iron overload syndrome, diabetes mellitus, and cancer. It is also essential to exclude treatable sleep disorders such as upper airway resistance syndrome and obstructive or central sleep apnea; rheumatological disorders such as rheumatoid arthritis, lupus, and polymyositis.
At this time, chronic fatigue syndrome is a diagnosis of exclusion. There are no standard lab tests or imaging studies that can prove a person has chronic fatigue. There are non-standard lab tests and imaging studies however, that do show changes specific to chronic fatigue patients.
Appropriate adrenal testing has shown that 24 hour cortisol levels are low and that there is a flat cortisol response. MRIs show a distinctive type of lesion in the brain and SPECT scanning shows a pathological decrease in blood flow in the cerebrum and mid-brain. Usually the immune system is hyperactive in chronic fatigue syndrome, while natural killer cell activity is low causing incomplete suppression of herpes viruses (including Epstein-Barr), chlamydia and mycoplasma. Because of this, reactivations are much more common in chronic fatigue than in the general population.
Mitochondrial failure has also been proven to play a significant role in chronic fatigue symptoms. Mitochondria are the energy producing parts of a cell. Dr. Sarah Myhill in the UK offers a mitochondrial function profile. This test is not available in the US.
In summary, this disease is a condition in which the hallmark symptom is post-exertional fatigue. Post-exertional fatigue means that any exertion leaves a person exhausted for at least 24 hours. For example, a person without chronic, even if he/she had other serious diseases, could ride an exercise bike to the point of fatigue, rest for 24 hours, repeat the test and match the previous day’s results. A person with chronic fatigue however, would do much worse the following day, if they were even able to get to the place of testing. Chronic fatigue affects virtually every system in the body including the central nervous system, the cardiovascular system and the endocrine system. It is real, it is not a psychiatric disorder and it can be managed. If caught and treated early enough, it can even be healed. Don’t miss Part II next week.
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