The Facts on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome by chealth.canoe.ca
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a condition causing persistent fatigue that lasts for at least 6 months (or longer) and isn’t due to another medical condition (e.g., hypothyroidism). It was once thought to affect only highly educated young adults who are “high achievers” or career-oriented professionals. It is now known that ME/CFS affects people of all ages and from all walks of life.
ME/CFS is about 2 to 4 times more common in women than in men. It is associated with extreme and prolonged fatigue that isn’t relieved by rest. People with ME/CFS experience persistent tiredness so severe that it may prevent them from working, exercising, and enjoying life. ME/CFS is a poorly understood condition and there is no clear consensus about its diagnosis and treatment.
ME/CFS is also known as myalgic encephalomyelitis (ME) or chronic fatigue immune dysfunction syndrome (CFIDS).
Causes of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Until recently, many people suffering from ME/CFS symptoms were brushed off as psychiatric cases or were told “it’s all in your head.” However, ME/CFS is now recognized as a genuine medical condition.
We don’t know exactly what causes ME/CFS, but it appears to be triggered by many different factors. Viral infections, genetic predisposition, environmental toxins, and immune reactions are all considered possible causes of the disorder. The persistent tiredness was once attributed to a virus called the Epstein-Barr virus (this virus is responsible for mononucleosis) but the link remains scientifically unproven and is no longer considered a potential cause
Recent research has focused on abnormalities in the levels of certain hormones, specifically cortisol (the stress hormone) and the female sex hormones. No one knows exactly what causes the regulation of these hormones to be affected in ME/CFS.
For some people, surgery, a head injury, or other traumas may trigger ME/CFS. Some medications including benzodiazapines, beta-blockers, sedatives, antidepressants, and excessive use of antibiotics can cause fatigue.
It’s likely that not one single factor is responsible, but rather a combination of factors. Physical activity and physical or emotional stress seems to make ME/CFS worse. However, further research is needed to figure out its causes and to better understand this puzzling condition.
Symptoms and Complications of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Extreme fatigue that lasts at least 6 months is the hallmark symptom of ME/CFS. People are constantly exhausted and feel that their stamina is continuously low. Other symptoms include:
- mild fever
- sore throat
- tender neck with swollen lymph nodes
- decreased ability to concentrate
- muscle weakness and joint pain
- memory and concentration problems
- difficulty sleeping
Problems with concentration and memory often occur. A person might have mental fogginess, impaired short-term memory, or the inability to concentrate to the point where regular activities are disrupted. Other symptoms such as gastrointestinal problems, sleep disorders, or abnormal body temperatures are also commonly reported.
Symptoms may be severe enough to interfere with work performance, leading to sick leave and extended periods of bed rest. The symptoms of ME/CFS can last for several years. However, they’re usually at their worst in the early stages of the illness. Some people never return to their original energy levels. Symptoms tend to reappear during times of emotional or physical stress.
Diagnosing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Doctors diagnose ME/CFS based on symptoms. Although a 6-month waiting period was once required before diagnosing someone with ME/CFS, this is no longer necessary. As long as a person has experienced unexplained and disabling fatigue and at least one symptom from 3 other sets of criteria (see below), a diagnosis can be made. Fatigue is considered unexplained if a thorough physical examination and medical testing have excluded other conditions that could cause fatigue.
In order to be diagnosed with ME/CFS, you must have “postexertional neuroimmune exhaustion.” This means you have experienced unexplained and disabling fatigue after simple activities and take a day or more to regain energy along with at least one symptom from each of the following 3 categories:
- neurological problems: For example, short-term memory loss, difficulty concentrating or thinking, pain, unrefreshing sleep, problems focusing vision, sensitivity to light or noise, problems with depth perception, muscle weakness, poor coordination
- immune, stomach, or bladder problems: For example, flu-like symptoms, nausea, food sensitivities, frequent urination
- problems with energy production or energy transportation within the body: For example, dizziness or lightheadedness, difficulty breathing, difficulty regulating body temperature
Treating and Preventing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Although there are no recommended or proven treatments to date, management of ME/CFS includes reassurance and support about the condition and how things will improve with time. It is difficult to predict when and how much someone with ME/CFS will improve, since this varies a great deal between individuals.
Cognitive behavioural therapy and exercise (starting slow and increasing over time) appear to produce the most benefit. A doctor will likely combine a number of different treatments aimed at addressing your specific symptoms, including:
- medical intervention and medications
- alternative therapies
- psychotherapy (cognitive behavioural therapy)
- physical and lifestyle adjustments
Since no medication has been specifically proven to cure ME/CFS, medications are used to treat some of the symptoms that are seen with ME/CFS. For depression, antidepressants such as selective serotonin reuptake inhibitors (SSRIs; e.g., paroxetine*, sertraline) or tricyclic antidepressants (TCAs; e.g., amitriptyline, imipramine) may be used. Antianxiety medications such as lorazepam may be used to treat anxiety. Sleeping pills, such as zopiclone, may be used to treat certain sleep disorders. Nonsteroidal anti-inflammatory drugs (NSAIDs) are used for headaches, fever, and general aches and pains.
ME/CFS can sometimes go away on its own. Medications should therefore be tried for short periods and then stopped, and the person’s status should be reassessed before continuing with medication treatment.
Some people seek alternative therapies, including massage, acupuncture, herbal products, and dietary supplements. Herbal preparations that have been used by some people with ME/CFS include astragalus, borage seed oil, bromelain, comfrey, echinacea, garlic, ginkgo biloba, ginseng, primrose oil, quercetin, St. John’s wort, and shiitake mushroom extract.
The value of alternative remedies is questionable. With few exceptions, most of these remedies haven’t been shown to be effective for treating ME/CFS patients. Many people believe that just because herbal products are “natural” they’re also safe. This isn’t always true: besides containing an active compound that may have medicinal properties, unrefined plant preparations also have other substances that can harm you. Comfrey and high doses of ginseng, for example, are known to have harmful effects. As well, herbal preparations and dietary supplements can interfere with other medications you may be taking or cause side effects.
Before taking alternative remedies, talk to a doctor or pharmacist about what’s safe and appropriate for your specific situation.
Psychotherapy is another strategy that can help people with ME/CFS and their families to cope with the symptoms of ME/CFS. Cognitive behavioural therapy may help alleviate some of the distress and concerns about ME/CFS and its affects on your work and personal life.
Physical and lifestyle changes may also be recommended. Prolonged lack of exercise can exacerbate physical weakness. A graded exercise regimen can be a means of restoring some of the loss of energy and stamina. “Graded” exercise means starting exercise slowly and gradually increasing the amount and intensity over time.
Learning ways to manage energy levels is important; for instance, overexertion during periods of good health can lead to a return of symptoms. Finding ways to cope and deal with physical and emotional stresses can help prevent a return of ME/CFS symptoms.
*All medications have both common (generic) and brand names. The brand name is what a specific manufacturer calls the product (e.g., Tylenol®). The common name is the medical name for the medication (e.g., acetaminophen). A medication may have many brand names, but only one common name. This article lists medications by their common names. For more information on brand names, speak with your doctor or pharmacist.