Myalgic Encephalomyelitis (ME)*The information on this website is not intended to diagnose, treat, cure or prevent any disease.
What is Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome?
Myalgic encephalomyelitis (also known as chronic fatigue syndrome) is a chronic medical condition which results in significant impairment in the ability to carry out normal, day-to-day activities. Sufferers of myalgic encephalomyelitis typically feel extreme fatigue and muscle pain despite a lack of physical exertion. This feeling of fatigue and weakness is unresponsive to rest. The severity of this condition can range widely, with some individuals unable to leave their homes or care for themselves.
The condition first started to become recognized in the 1930s, and it was not until the 1950s that the term “myalgic encephalomyelitis” was first used. This name is unusual for its relative inaccuracy in describing many cases of the disorder. The term “encephalomyelitis” implies inflammation of the brain, which has not been established as an actual part of the condition, and the term myalgia implies muscle pain, which is true in some, but not all, cases. The term chronic fatigue syndrome has been proposed by the CDC as a more fitting term, however both terms may be used to refer to the disease.
The number of people affected by the condition is unclear, but it may affect up to 2.5 million people in the United States. It is believed that the vast majority of people with the condition go undiagnosed due to the wide range in presentation and severity, as well as varying definitions of the condition.
It is an economically significant condition, costing billions of dollars in lost productivity and health care costs. It is also a condition which may result in permanent disability for those who are affected. Some proportion of people are able to recover either fully or partially, however most people seem to be chronically affected and may never be able to return to normal activity. The condition can affect both children and adults; children tend to have a better prognosis for recovery.
Common symptoms of ME/CFS include:
- Moderate or extreme fatigue
- Muscle pain
- Lymph node enlargement
- Sore throat
- Extreme fatigue after physical or mental exertion
- Difficulty concentrating
- Memory impairments
- Intestinal upset
- Sweating at night
- Sleep disturbances
The diagnosis of ME/CFS can be difficult to obtain, due to the vague signs which can be due to a wide variety of other health causes. Because there is no test which can definitively identify ME, diagnosis mainly depends on excluding other possible causes of the symptoms. This includes conditions ranging from infections, metabolic disorders, anemia, vitamin deficiencies, psychiatric issues, and sleep disorders. A physician may recommend a wide range of diagnostics in order to exclude these other possible causes. Recommended tests will likely include:
- Complete Blood Count: This can exclude conditions such as anemia.
- Serum Chemistry: Your doctor may want to evaluate your blood sugar, electrolytes, kidney, and liver values to make sure there is not another underlying disease process.
- Thyroid Hormone Levels: Low thyroid levels can closely mimic the signs of ME.
- Vitamin Level Testing: Low vitamin D, B12, and B6 vitamins can cause signs similar to ME.
- Heavy Metal Testing: Heavy metals such as lead, mercury, cadmium, and others can have a wide range of physical and psychologic effects.
- Infectious Disease Testing: Diseases such as mononucleosis (Epstein-Barr virus), Lyme disease, and toxoplasmosis may all have vague symptoms and some of these may be causes of ME.
- Sleep Disorder Tests:
- Polysomnography: This is a thorough evaluation of your sleeping patterns. It includes recording muscle activity, eye movements, brain waves, breathing patterns, and oxygenation levels.
- Overnight Oximetry: This is a simple test which evaluates oxygenation levels, which may be low in cases of sleep apnea.
- Exercise Stress Testing: This may be performed to exclude cardiovascular reasons for fatigue
- Psychiatric Evaluation: Evaluation by a therapist, counselor, or psychiatrist may be helpful to exclude any purely psychologic causes for your symptoms.
Pharmaceuticals and Medical Procedures: There is no specific medication for ME, however there may be some medications indicated depending on your combination of signs or risk of an infectious cause:
- Anti-depressant medications: Generally, antidepressants are not considered effective agents for ME, however many people with ME do experience true depression. In these cases, individuals may benefit from a prescription anti-depressant to help manage the psychologic effects of their physical fatigue. Selective serotonin reuptake inhibitors (SSRIs), selective norepinephrine reuptake inhibitors (SNRIs), tricyclic antidepressants (TCAs), monoamine oxidase inhibitors (MAOIs), or atypical antidepressants may be recommended. Often trials of different medications are required in order to find that one which works for each individual.
- Antimicrobial Medications: These may be indicated if infectious agents such as Lyme disease are suspected to be involved.
- Antiviral Medications: These may also be beneficial in some people; however, the side effect profiles tend to outweigh the benefits for most people.
Non-pharmaceutical and Alternative Therapies:
The most effective therapies are non-pharmaceutical. It will usually include psychologic support as well physical therapy, however there are other alternative options which may be helpful.
- Psychological/Cognitive Therapy: Depression and feelings of limitations are common consequences of ME. Having sessions with a therapist or counselor can help manage these feelings.
- Physical Therapy/Graded Exercise: Exercise regimens modified to people with ME are thought to be potentially helpful, however it has become controversial in recent years, and the benefits are unclear. Some people may find other benefit while others do not.
- Pacing: This is a life-management strategy in which an individual either limits their physical activity based on worsening symptoms, or limits their amount of activity which is performed during a period of time.
- Dietary Modification: The diet should be well-balanced, but there may be some people who have dietary sensitivities (such as gluten or lactose) and may benefit by eliminating these ingredients. Avoiding refined sugars and increasing the intake of complex carbohydrates/starches which are slowly released over time may improve energy throughout the day. Increase intake of omega-3 fatty acids, vegetables, and non-animal proteins. Reduce alcohol and caffeine intake. Some people with ME find relief through the Leaky Gut Diet.
- Mind-Body Approaches:
- Meditation: Mindful meditation can help improve mental wellness, decrease the focus on physical manifestations of the condition, and promote overall relaxation.
- Aroma Therapy: This can help relax the mind and reduce focus on fatigue and discomfort.
- Art Therapy: Art therapy can provide a creative outlet which may require little physical effort.
- Acupuncture: This is helpful for many people with complex conditions which have physical and mental components. Acupuncture can improve feelings of relaxation, promote healthy sleep, and relieve pain.
- Chiropractic Care: Many people with ME may benefit from chiropractic care and adjustments to relieve pain and discomfort.
- Deep Pressure Massage: This may reduce feelings of muscle fatigue/pain, as well as improve relaxation.
- Probiotics: The microbiome of the intestines is altered in ME. Using probiotics can help restore a normal microbiome and alter neurotransmitter production in the intestine and reduce overall inflammation in the body. Some people have reported remarkable improvements in their signs after beginning a probiotic regiment.
- Chelation Therapy: This may be tried in the event that heavy metal is suspected to be related to the symptoms.
- Epsom Salt Baths: These mineral baths are inexpensive, relaxing, and can help the body absorb magnesium, which may aid in restful sleep.
- Mold Binders: Products like cholestyramine and apple pectin can help remove toxic mold from the body. Mold toxins may be an occult contributor to ME.
- Fish Oil: Omega-3 fatty acids seem to be helpful in some people with ME, however studies have been mixed and it does not seem to be a reliable finding.
- Panax Ginseng: A study performed in 155 people with ME found that Panax ginseng was helpful in reducing symptoms. It is also thought to be an immune-boosting agent. It is important not to confuse Panax ginseng with other types of ginseng, such as Siberian ginseng. These are different herbs and Siberian ginseng has not been found to be helpful.
- Nicotinamide Adenine Dinucleotide (NADH): NADH is an intermediary compound generated during cellular metabolism. This may help with muscle fatigue in some people with ME.
- DHEA: This is a naturally-occurring hormone which is decreased in people with ME. It serves as a precursor to the sex hormones estrogen and testosterone, and regulates many elements of mood. It may be helpful in some people with ME, however blood levels should be closely monitored as it is easy to overdose and can have a wide-range of undesirable side effects.
- Coenzyme Q10 (CoQ10/Ubiquinone): This coenzyme is important in cellular metabolism and is also a potent antioxidant. Many people with ME find CoQ10 to be very helpful in reducing symptoms of fatigue.
- Melatonin: Melatonin may help improve sleep quality.
- Essential Minerals and Vitamins: These supplements may be helpful in improving overall wellness and reducing other factors which may contribute to fatigue.
- Vitamin A, C, D and E
- Vitamin B12
- Licorice Root: This is an immune-boosting root which may be helpful. Some aspects of ME are thought to be related to immune dysfunction.
- L-Carnitine: This is derived from amino acids and plays an important role in cellular metabolism by transporting long-chain fatty acids into the mitochondria for metabolism. It has been shown to improve symptoms in small studies of people with ME.
- Glutamine: This amino acid has many functions and may be helpful in ME.
- Astragalus Root: This natural root has anti-viral and immune-boosting properties.
- Garlic: Taking a garlic supplement or eating raw garlic may be helpful through its antiviral and immune-boosting effects.
- Ashwagandha: This Ayurvedic herb is helpful for fatigue from many different causes. It also helps reduce the effects of excessive stress on the body.
- D-Ribose: This is a specific type of sugar which is easily converted into energy by cells.
There is no certain way to prevent ME from occurring due to the uncertain nature of its underlying cause (which may be multiple). The best approach to preventing ME will involve living a healthy lifestyle; this includes eating a healthy, varied diet. A healthy diet should be rich in antioxidants, vitamins, healthy fats, and low in saturated fats, refined sugars, alcohols, and caffeine. Focus on eating fresh fruits and vegetables, fish, nuts, and berries. Regular exercise is also an important component to a healthy lifestyle; this naturally reduces stress, maintains muscle strength, and improves immune function. Eliminating unhealthy habits such as smoking, excessive consumption of alcohol or caffeine, and sedentary activities will help improve your overall quality of life.
There is evidence that ME may be due to infectious causes in some cases. Taking steps to avoid viral infections through washing hands, avoiding sharing drinks/food with strangers or sick individuals may be important (particularly in situations where mononucleosis is transmitted, such as in college or high school). Tick-borne disease may also play a role; when hiking, wear long, protective clothing. Use insect repellant and perform “tick checks” with a friend or significant other after hiking to ensure that there are no ticks embedded in your skin/hair. Remove any ticks promptly to minimize the chance of disease transmission.
Stress also appears to be a risk factor in developing ME. Taking steps to mange your stress in healthy ways through meditation, therapy, and healthy activities may help reduce this risk factor.
There are many different possible causes of ME, and there may not be a single cause which explains every person’s condition. There is a high degree of suspicion that many causes of ME are due primarily to viral infections. There is strong evidence that infection with the Epstein-Barr virus (which causes mononucleosis) is a potential cause, or minimally precipitates, ME. Over 20% of people who develop mononucleosis will go on to develop symptoms of ME within 6 months of infection. It is unclear if ME is a direct cause of the disease, or if it may be due to secondary immune-dysfunction which occurs later. People with ME have been found to have abnormal activity of a type of white blood cell called “Natural Killer” cells, increased B cell (anti-body producing cell) activity, as well as derangements of inflammatory signals interleukin 10 and toll-like receptor 4.
These derangements in cytokines have led to other theories that ME may actually be an autoimmune disorder, and that Epstein-Barr virus may just be one possible trigger (especially since not all cases seem to be related to mononucleosis). These findings are inconsistent across all patients with ME, however, and only some seem to have evidence of immune dysfunction or abnormal immune regulation.
There are other infectious causes proposed to be related to ME or may cause some cases of ME include Lyme disease, a tick-borne disease caused by the bacterium Borrelia burgdorferi. Lyme disease causes a wide range of manifestations, and may ultimately be responsible for many different conditions. This disease should be considered, particularly if you live in a Lyme-endemic area such as the northeastern United States. In addition to Lyme disease, a bacterial infection called Q fever, caused by Coxiella burnetti, which is usually an infection of livestock, may be related to ME. It can be transmitted through exposure to contaminated urine, feces, or milk of infected animals. Most people are exposed either through their profession (farmers, veterinarians), or through the consumption of unpasteurized dairy products. Ross River virus, a virus transmitted via mosquitos, has also been linked to ME. This virus is endemic in Australia and Papua New Guinea and is the most common mosquito-borne infection in Australia. Obviously, this does not explain the vast majority of cases of ME in the United States, but may be a risk factor for international travelers. There are a few other viruses which have been linked, however the evidence is preliminary. They include rubella, human herpesvirus 6, bornavirus, and human immunodeficiency virus (HIV).
Another proposed cause of ME is due to endocrine dysfunction regulating cortisol production. There often is a serious stressful event which precipitates ME. Stressful events typically lead to surges/sustained production of the steroid hormone cortisol. People with ME often have low-normal levels of circulating cortisol and display aberrations in the usual daily patterns of cortisol secretion (for example, in healthy people, there is a cortisol surge just prior to awakening; in people with ME, this surge is dampened).
There is also evidence for a genetic link in ME, although genes which confer risk have yet to be identified. Some cases of ME seem to run in families, and twin studies have supported that idea that there is at least a genetic component (although the overall condition likely depends on genetic and environmental factors).
Toxic factors should also be considered. Mycotoxins produced by toxic mold have been found in some people with ME. This is an often-overlooked cause of ME in many people. Living in a mold home or working in a moldy workplace may contribute the disease process. Heavy metal toxicity, which can occur through ingestion of contaminated food, water, or through environmental exposure, or dental implants such as amalgam fillings, could also potentially play a role.
Dietary conditions may also contribute. Whether there is sensitivity to gluten or other dietary components, many people who change their diets or employ elimination diets not improvement in their condition. Probiotics also seem to improve symptoms for some people, which suggests gut health overall is an important component for many cases of ME.
There may also be cellular metabolism changes which result in ME. People with ME seem to have lower levels of cellular energy production compared to unaffected people. This may explain why some supplements such as CoQ10 and NADH seem to help some people with ME, as these serve as intermediates in energy production. The underlying cause of why cellular metabolism is disrupted is unclear, but may be due to the variety of causes already described. Disruption of cellular metabolism may serve as a common pathway of many different causes of ME.
Clinics for Management of ME/CFS
University of Michigan Chronic Pain and Fatigue Research Center
Chronic Fatigue Syndrome Center – Medical City Fort Worth
Kaplan Center for Integrative Medicine
Links to Articles, Research, and Other Information to Help You Heal from ME/CFS