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.
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
(See Common Symptoms for more detail.)
Because ME/CFS is such a poorly understood condition, determining who is at risk for the illness is a difficult task. The Centers for Disease Control has estimated that more than one million Americans have ME/CFS according to the “Fukuda” diagnostic criteria developed in 1994, though they estimate that fewer than 20% of those with the illness have been diagnosed. They also estimate that 10 or 20 times as many people may have a condition similar to ME/CFS that doesn’t meet the strict requirements for diagnosis. Despite these problems with diagnosis, risk factors have been determined.
ME/CFS often appears to be triggered by a stressor of some sort, but this is not necessary. The apparent stressor is typically physiological, such as a viral infection/flu-like illness or toxic exposure, but may be a mental or physical trauma. The appearance of ME/CFS may follow the suspected trigger closely or be separated by many years.
You are more likely to have ME/CFS if you are an adult female (60% to 85% of diagnosed cases are women), however, men and children can also have it. The incidence of children and adolescents with ME/CFS is difficult to determine because until 2006 there was no pediatric case definition. (See “A Pediatric Case Definition for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome”)
Interestingly, ME/CFS has occurred in large outbreaks, such as in a building or neighborhood. This has led a number of scientists to speculate that there may be an infectious cause, such as a virus, or an environmental component, such as toxic exposure, but this has yet to be proven.
In addition, there may be a genetic dimension to the risk of developing ME/CFS. Ongoing genomic research has identified 88 genes whose expression differs significantly in ME/CFS patients by comparison with normal controls, as well as seven likely genomic subtypes characterized by different constellations of symptoms and levels of severity.
Because there is no accepted test for this condition, ME/CFS is diagnosed by exclusion. What this means is that the condition is diagnosed by first excluding all other diseases that are similar to ME/CFS. This typically requires tests for anemia, thyroid conditions, mononucleosis, depression, Lyme disease, diabetes, multiple sclerosis, cancers, and bipolar disorder. Once these other diseases have been ruled out, then the diagnosis of ME/CFS is made based on symptoms.
The diagnostic criteria most often used are described in the 1994 International ("Fukuda") Definition for Chronic Fatigue Syndrome. According to that definition, a person is considered to have ME/CFS if he/she has:
1. Unexplained, persistent or relapsing chronic fatigue that is not substantially alleviated by rest, and results in substantial reductions in levels of occupational, educational, social, or personal activities; and
2. Four or more of the following symptoms lasting for six or more consecutive months:
- Self-reported impairment in short-term memory or concentration
- Post-exertional malaise (extreme, prolonged exhaustion and a worsening of symptoms following physical or mental exertion)
- Unrefreshing sleep
- Muscle pain Multi-joint pain without joint swelling or redness
- Sore throat Tender neck lymph nodes
- Headaches of a new type, pattern, or severity
Since so much about ME/CFS is unknown, the causes of the condition are even more a mystery. Currently there are a few competing ideas, with interactions among these factors under evaluation:
- Infection: ME/CFS bears some remarkable similarities to other infections, especially mononucleosis. Testing people for Epstein-Barr (EBV), herpesvirus, enterovirus, mycobacterium, rubella, retrovirus, Candida (yeast) have all proved inconclusive. Many sufferers of ME/CFS can relate a story of having an infection or flu-like illness before becoming ill with ME/CFS, but this is not necessarily true with all sufferers.
- Immune System: Some researchers believe that ME/CFS is an autoimmune disease similar to lupus, but this has also proven inconclusive. The immune system is affected in many people with ME/CFS as a decrease in immune function; and a propensity to allergic symptoms is also very common among sufferers.
- Hormonal Imbalance: The most common hormonal problem in ME/CFS sufferers is disruption of the hypothalamic-pituitary-adrenal axis. This hormonal system is responsible for the fight or flight response, typically experienced as anxiety and nervousness. Physical or emotional stressors can cause a dysregulation of this hormonal system, which can lead to further stress and anxiety, a sort of vicious cycle. Constant stress and anxiety can also reduce the immune system function.
- Hypotension: Many people with ME/CFS have hypotension (low blood pressure). Scientists are puzzled by this low blood pressure and suggest that it may be the result of problems with the nervous system. Hypotension leads to fatigue and tiredness.
- Nutritional Deficiency: Many people with ME/CFS have nutritional deficiencies, but it is difficult to determine if this is the cause or a result of the disease. Typically, ME/CFS sufferers are low in B-vitamins, magnesium, vitamin D, and many other nutrients.
- Mitochondrial Dysfunction: Recent research suggests some factor interfering with the highly complex mechanism of energy production at the cellular level.
- Central Sensitivity: It is suggested that symptoms of ME/CFS and often-overlapping conditions such as fibromyalgia are manifestations of central nervous system sensitization – “an exaggerated response of the central nervous system [spinal cord and brain] to stimuli.
- Predisposing Genetic Factors: As suggested by the ongoing gene-expression research, differences in symptoms experienced and severity may correspond with a number of genomic ME/CFS subtypes.
More than likely, the cause of ME/CFS is the result of a combination of factors, where one factor can affect the other. For example, stress can reduce the effectiveness of the immune system. With a lowered immune system, infection is more likely, and having a chronic infection can lead to more stress. There are many systems in the body that interrelate in similar ways.
Treatment of ME/CFS is as varied as the condition, is usually tailored to the patient, and tends to focus on sleep, pain relief, and fatigue. Typical medical treatment would include:
- Sleep aids
- Pain medications
- Antidepressants
- Antivirals and/or antibacterials
- Anti-inflammatories, including steroids
- Injections of B-vitamins and magnesium.
Along with the above medications, lifestyle factors are often suggested such as mild exercise or conditioning (within a scrupulously observed “envelope” to avoid post-exertional malaise), stretching, or yoga, along with avoiding caffeine, drugs, and alcohol. Learning to cope with illness is an important part of any treatment. Adjusting expectations to new abilities, preventing overexertion, reducing stress, changing diet and nutritional supplementation should all be considered.
(See Treatment Modalities for more detail.)
If you have a primary care physician with whom you’ve established a good rapport, discuss your concerns regarding ME/CFS. Chances are she has other patients with the same illness, but if not, provide her with information you’ve found helpful. She may or may not remain the gatekeeper in your care, but she should be able to help you find a physician who is familiar with ME/CFS and able to help you.
While there are a few doctors who specialize in ME/CFS, there is not a specific medical specialty that covers it. If your doctor is not able to recommend someone, your best resource for finding a doctor who is knowledgeable about ME/CFS in your area is probably a local support group. (Check ProHealth’s Support Group Listing to find a group near you. ProHealth's ME/CFS Message Board is also a good place to ask if anyone knows of a good doctor in your area.
Talking with family and friends may shed some light on your search as well. Hearing of a physician with compassion, one who spends time with patients and listens, goes far when making a decision. Overall, you want to find a physician who is committed to learning as much as she can about the condition so she can provide you with the best possible care.
Do a little research on the doctors you are considering. First, check with your insurance carrier to find out which health care providers are covered by your plan. If there aren’t any suitable doctors in your plan, inquire about out-of-network coverage and charges. Next, check out the doctor’s medical credentials and whether there have been any malpractice suits or disciplinary actions against her. Below are just a few resources to help you begin your research:
- The American Medical Association’s Doctor Finder includes physician profiling information such as medical school, training and specialty.
- The American Board of Medical Specialties will tell you if your doctor is board certified and in what specialties. “Board certified” means the doctor has completed two additional years of training and passed a national examination. “Board eligible” means the training, but not the test, has been completed.
- Contact your state’s Board of Medical Examiners to find out about any history of malpractice suits.
- Find out how other patients feel about a doctor you are considering. There are several Web sites, such as RateMDs.com, where patients rate their doctors. This particular site covers doctors and dentists in the US, Canada, the UK, Australia, New Zealand and India.
As with any chronic illness, navigating your way within the medical world will require you to be your own advocate. This means being proactive about your care, staying informed, and being organized about your needs during each appointment. This is not an easy road, and balancing the medical, insurance and care aspects of your health is going to require clarity and work on your part.
Fibromyalgia and ME/CFS share many symptoms in common and may very well be related, but distinct entities. People with ME/CFS also frequently have other comorbid conditions such as depression, anxiety, panic attacks, insomnia, irritable bowel syndrome, headaches, allergies and more.
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