[Last updated October 5, 2021]
This article a similar one on fibromyalgia offer basic facts about the two conditions.
What is ME/CFS?
What are its symptoms?
Who gets ME/CFS?
How is it diagnosed?
What causes ME/CFS?
How is ME/CFS treated?
What is the prognosis?
What is ME/CFS?
ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) is also known as ME, Chronic Fatigue Syndrome (CFS), and, formerly, Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). The condition is a chronic disorder affecting the brain and other systems.
Debilitating fatigue is usually the most prominent symptom. Other common symptoms include unrefreshing sleep, body pain, mental confusion ("brain fog"), and orthostatic (upright) intolerance. Emotional issues such as depression, anxiety, irritability and grief, are common.
The severity of ME/CFS varies greatly. While some patients continue to lead relatively active lives, others are housebound or even bedridden. Among people joining our self-help program, most rate themselves between about 15% and 40% of normal.
As a long-term and often severe illness, ME/CFS affects many parts of patients' lives, creating many challenges and requiring many adjustments. People with ME/CFS must struggle to control their symptoms and adapt their lives to the limits imposed by their illness.
Adaptations may include reducing or eliminating paid work, reducing family responsibilities, coping with increased stress and intense emotions, and coming to terms with loss.
What Are Its Symptoms?
People with ME/CFS usually experience several or even many symptoms. The severity of symptoms often waxes and wanes. One symptom may be the most prominent at one time, another in a later period. The four most common symptoms are fatigue, pain, poor sleep and cognitive problems.
Fatigue: Fatigue is experienced as a deep exhaustion that can be brought on by low levels of activity or for no apparent reason. This is often referred to as "exertion intolerance." Fatigue is often disproportional to the energy expended and lasts far longer than it would in a healthy person.
This "post-exertional malaise" is a hallmark of ME/CFS and is defined as the worsending of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks. on.
Pain: Pain may be experienced in the joints or, more commonly, as an overall body pain that is often described as the feeling of being run over by a truck. Pain may be intensified by overactivity, non-restorative sleep, anxiety and stress, and changes in the weather.
Poor Sleep: Sleep is often experienced as unrefreshing. People with ME/CFS often feel as tired when they get up as before going to bed. Sleep problems are usually a part of the illness, but they may be intensified by other factors such as stress, overactivity, and the absence of a good sleep environment or good sleep habits.
Cognitive Problems: Most people with ME/CFS experience cognitive difficulties, often called "brain fog." Cognitive problems include feeling confused, difficulty concentrating, fumbling for words and lapses in short-term memory. Brain fog can be reduced by limiting activity, getting adequate rest, managing stress and by limiting sensory input.
Other Symptoms: Patients often experience other symptoms as well, which create further discomfort. Common additional symptoms include: headaches, low-grade fevers, sore throat, tender lymph nodes, anxicety and depression, ringing in the ears, abdominal pain (gas, bloating, periods of diarrhea and/or constipation), allergies and rashes, sensitivity to light and sound, abnormal temperature sensations such as chills or night sweats, weight changes, and intolerance of alcohol.
About 70% of persons with ME/CFS experience Othostatic Intolerance (OI) in which symptoms worsen by sitting or standing for even short periods of time and are ameliorated by lying down. OI may manifest as increased fatigue, weakness, nausea, abdominal pain, poor concentration, nervousness, shortness of breath, lightheadedness, headache, tremulousness, palpitations, and even faintness.
Who Gets ME/CFS?
ME/CFS is a common illness. Research suggests that there are more than one million people with ME/CFS in the United States and comparable numbers elsewhere. Research has disproved the earlier idea of ME/CFS as the "yuppie flu." The illness affects all racial and economic groups, striking more vulnerable populations more frequently than upper middle class whites. About three-quarters of patients are women.
How is it Diagnosed?
Since there is as yet no diagnostic test for identifying ME/CFS or proven physical marker for the illness, diagnosing ME/CFS can be difficult. Severe fatigue and other symptoms of the condition can be caused by several different illnesses.
The illness is most often diagnosed in the United States using criteria developed in 1994 by an international consensus committee organized by the US Centers for Disease Control. Using their guidelines, the condition is diagnosed in a two-step process.
First, a thorough medical examination and laboratory testing are used to exclude other illnesses that have similar symptoms. Besides fibromyalgia, these may include thyroid problems, anemia, Lyme disease, lupus, MS, hepatitis, sleep disorders and depression.
Second, if other illnesses have been excluded, a patient is considered to have ME/CFS if two further criteria are met:
- The person has experienced at least several months of a new, debilitating fatigue that forces a substantial reduction of activity.
- The person reports four or more of the following eight symptoms:
- Impaired memory or concentration (mental confusion)
- Sore throat
- Tender lymph nodes in the neck or armpit
- Muscle pain
- Joint pain without redness or swelling
- Headaches of a new or different type
- Non-restorative sleep
- Extreme fatigue following activity (post-exertional malaise)
A 2003 Canadian definition emphasizes intensification of symptoms after activity (post-exertional malaise), as well as disturbed sleep, pain, cognitive/neurological problems, and symptoms from at least two of three additional areas: autonomic problems, neuroendocrine issues and immune problems.
(For details, search online for “Canadian Consensus Criteria.”) The 2011 International Consensus Criteria extend the Canadian definition. (Search online for “2011 International Consensus Criteria.”)
In 2015, the National Academy of Science's Institute of Medicine (IOM) released a 300 page summary review of ME/CFS, which was commissioned by the US Department of Health and Human Services. In the report, titled "Beyond Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Redefining an Illness," the IOM recommended renaming the condition as Systemic Exertion Intolerance Disease (SEID) and applying an abbreviated definition that required basically four criteria:
- Prolonged fatigue (exertion intolerance) of a degree sufficient to affect lifestyle or work
- Post-exertional malaise
- Non-restorative sleep
- Cognitive dysfunction and/or orthostatic intolerance
Application of these simplified criteria implies that other plausible causes of the fatigue will be excluded and that most practitioners would also apply one of the older definitions as well. While the new name clearly describes this illness more aptly, and the new definition is more streamlined, the new recommendations have been slow to be adopted to date. The entire report and an Executive Summary are available online.
It is important to note that the presence of ME/CFS does not exclude a patient’s having other illnesses as well. A majority of people with ME/CFS also have fibromyalgia.
Some conditions often found in people with ME/CFS include:
- Cranio-cervical instability
- Food and digestive issues: Candida, Celiac disease, lactose intolerance
- Irritable bowel syndrome (IBS)
- Joint hyperextensibility (Ehlers-Danlos features)
- Mitral valve prolapse
- Multiple Chemical Sensitivities
- Orthostatic problems such as neurally mediated hypotension (NMH) and postural orthostatic tachycardia syndrome (POTS)
- Overactive bladder
- Sensitivity to light, sound, smell and touch
- Sjogren's syndrome/sicca (dry eyes/mouth)
- Small fiber neuropathy causing numbness and tingling
- Sleep disorders such as apnea and restless legs syndrome
- Temporomandibular joint disorder
- Thyroid problems
What Causes ME/CFS?
The cause of ME/CFS is unknown. A large portion of cases are triggered by an infection and some by trauma. Stress is also present at the onset in almost all cases. Some people believe that ME/CFS is caused by an agent entering the body, while others think it is due to the body's response, possibly to various agents.
Since ME/CFS can appear both in clusters and in individual cases, and because it manifests with a wide variety of symptoms and in a wide range of severities, some researchers suggest that ME/CFS may prove to be several or even many illnesses. Future research will determine whether it is one or more illnesses.
How is ME/CFS Treated?
Given the lack of understanding of the cause and the absence of a cure, treatment for ME/CFS focuses on controlling symptoms and improving quality of life. Medical treatment is tailored to the individual patient, often focusing on addressing the most bothersome symptoms such as sleep disorders and pain.
Since no medication is commonly helpful, there is often a period of experimentation to find what works for a given individual. Medications may have to be changed periodically, as they can lose effectiveness. Patients are usually started with very low dosages.
Many ME/CFS authorities recommend the approach we advocate in our program: making use of medical treatments where appropriate, but focusing on lifestyle adjustments such as pacing, control of stress and good support. Self-management techniques are often the most potent strategies for treating ME/CFS and fibromyalgia.
ME/CFS/FM physician Dr. Charles Lapp summarizes the appeal of this approach when he states "There is no drug, no potion, no supplement, herb or diet that even competes with lifestyle change for the treatment of ME/CFS or FM."
The principal and probably most effective technique for controlling fatigue is adjusting to the limits imposed by ME/CFS, which we call “living within the energy envelope." Living within limits includes strategies such as setting priorities, taking regular rests, having short activity periods, living by a schedule, and managing special events like vacations and holidays.
Fatigue can also be lessened by addressing pain and poor sleep, both of which intensify fatigue. Fatigue has additional causes, such as stress and emotions, deconditioning, and poor nutrition. Stress management, low levels of exercise, and healthy eating can help reduce fatigue by addressing these causes.
Just as with fatigue, pain is a reflection of the limits imposed by illness, so pacing is usually helpful. Knowing your activity limits and staying within them, having short activity periods, switching from task to task frequently and taking rest breaks all reduce pain.
Also, addressing fatigue and poor sleep can reduce pain. When we feel tired, we experience pain more intensely, so reducing fatigue also reduces pain. Similarly, poor sleep intensifies pain, so improving sleep is also a way to control pain.
Some pain relief may also be achieved through medications:
- Non-prescription products such as aspirin and other over-the-counter pain relievers
- Prescription medications intended primarily for sleep
- Anti-depressants such as Elavil (Amitriptyline), Prozac and Paxil
- Anti-epileptic drugs such as Lyrica/pregabalin that calm overactive nerves
- Prescription pain relievers such as Ultram (tramadol).
Also, Cymbalta (duloxetin), and Savella (milnacipran) have been FDA-approved for the treatment of fibropain that frequently accompanies ME/CFS.
Sleep can often be improved through maintaining good sleep habits and by having an environment conducive to good sleep. Sleep-related habits include keeping regular times for going to bed and getting up, limiting daytime napping, avoiding caffeine and other stimulants before bedtime, and practicing relaxation to fall asleep.
A good sleep environment includes a good bed, the absence of noise and an appropriate temperature. Reducing pain through stretching or a bath and dealing with worry can also help improve sleep.
Medications commonly used to treat sleep include over the counter products like melatonin and valerian, antihistamines such as Benadryl, tricyclic antidepressants such as amitriptyline (Elavil), benzodiazepines such as Klonopin (clonazepam), and the hypnotic drug Ambien.
Non-benzodiazepines sleep medications such as Lunesta (eszopiclone), Sonata (zaleplon), Belsomra (suveorexant), Dayvigo (lemborexant), and Rozerem (ramelteon) are also very effective and thought to be less habituating. Often a combination of two drugs is prescribed, one to initiate sleep and another to maintain sleep.
Sleep disorders such as sleep apnea and restless legs syndrome are very common in people with ME/CFS and sleep can be improved by treating them.
As with other symptoms, brain fog is addressed most effectively using a combination of approaches. Strategies that are generally helpful for ME/CFS, such as pacing and stress management, also help control brain fog. Other techniques that patients often use to control fog include getting good sleep, doing one thing at a time, limiting sensory input, using lists and other reminders, having daily and weekly routines, and keeping an orderly physical environment.
Stress, Emotions, Support & Loss
As mentioned earlier, ME/CFS has comprehensive effects, touching many parts of patients' lives and creating challenges besides dealing with symptoms.
A treatment plan should address, in addition to symptom management, issues such as managing stress and emotions, strengthening support systems, and coming to terms with loss. Dealing successfully with these additional challenges usually reduces symptoms, so is also a form of symptom management.
What is the Prognosis?
There is so far no cure for ME/CFS and its course varies greatly. It appears that significant improvement is possible, but some patients worsen over time and total recovery is infrequent. The prognosis is probably somewhat better in younger patients.
A 2012 Medscape CME course titled “Chronic Fatigue Syndrome: The Challenge in Primary Care” included a review of research on the prognosis for ME/CFS. It reported that studies from specialist clinics during the 1990’s showed that 17% to 64% of adults improved, 10% to 20% worsened over time, and less than 10% recovered.
A 2005 review of 14 ME/CFS case study reports concluded that a median of 5% recovered, and there was about a 40% median improvement over follow-up. Between 54% and 94% of children showed improvement over a period of 6 years or more in another study.
In addition to a range of outcomes, the course of ME/CFS also varies. Some people with ME/CFS make relatively steady progress, some swing between periods of improvement and times of intense symptoms, while still others have a relatively stable level of symptoms, neither improving nor declining.
Our program is based on the belief that most patients can find things to help them feel better. These strategies are not aimed at curing ME/CFS, but they can help reduce pain and discomfort, bring greater stability, and lessen suffering. Improvement requires effort, courage, discipline and patience.
In the words of Dr. Lapp, the key to improvement is “acceptance of the illness and adaptation to it by means of lifestyle changes, for which medical treatment is no substitute.”