Since 1934, chronic fatigue has gone by many names, but today it’s called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).This disorder affects more than 2.5 million Americans, but despite that number, ME/CFS is not taught in many medical schools, many doctors don’t take it seriously, and few are prepared to treat it.
Myalgic encephalomyelitis means muscle pain and inflammation of the spine and brain, even though not all people with this condition have muscle pain or clear evidence of inflammation. What people with ME/CFS do have is life-changing fatigue that is relentless and unrelieved by sleep.
Symptoms and diagnosis
No tests can diagnose ME/CSF: It is a diagnosis of exclusion. Anemia, depression, white blood cell cancers, celiac disease, Lyme disease, multiple sclerosis, and fibromyalgia must all be ruled out first.
Since there are no tests, diagnosis rests on the symptoms. To be diagnosed, a person needs to have two types of symptoms for more than six months. They must first have three core symptoms:
- Chronic fatigue that is unexplained, not reduced by rest, and severe enough to affect daily activities.
- Worsening symptoms after physical activity or emotional stress, called post-exertional malaise (PEM). People with ME/CFS may describe it as a relapse or a crash.
- Disturbed or unrefreshing sleep. Sleep disturbance may include insomnia, but the main symptom is not feeling rested or refreshed after sleep.
For an ME/CFS diagnosis, they must also have either cognitive impairment or orthostatic intolerance. Cognitive impairment is problems thinking clearly, paying attention, or making decisions. People with ME/CFS often call this brain fog. The brain fog gets worse after any physical effort or emotional stress.
Orthostatic intolerance is the worsening of symptoms upon standing.
Other common symptoms include muscle pain, headache, sore throat, constipation, diarrhea, chills, night sweats, shortness of breath, and heart palpitations.
Treatment and prognosis
There are no approved drugs or treatment guidelines for ME/CFS. Cognitive behavioral therapy and graded-exercise therapy had some early research support, but follow-up studies found they were not effective. Trials of antiviral drugs, antibiotics, steroids, vitamins, supplements, and antidepressants have all failed.
What may help is managing specific symptoms:
- For orthostatic intolerance, increasing fluids and salt intake along with wearing support stockings may keep blood pressure from falling.
- Over-the-counter pain medications may reduce pain.
- Working with a mental health-care provider can help anxiety and depression.
- Prescription medications are sometimes used to treat muscle spasms, insomnia, depression, anxiety, or brain fog.
People with ME/CFS often have problems sleeping, but even those who sleep well often feel tired when they wake up. The ME/CFS and Fibromyalgia Self-Help Program, founded by Bruce Campbell, PhD, notes that this is most likely due to insufficient delta sleep—the deepest and most restorative sleep phase. To improve your sleep, follow the principles of sleep hygiene. Create a comfortable environment that is dark, quiet, and cool. If you have a partner who snores, sleep separately. Go to bed and get up at the same time each day. Turn off electronic devices and television at least 30 minutes before bedtime. Try taking a warm bath or shower before bed. If you can’t fall asleep, get out of bed and read or listen to soft music until you are sleepy. Use relaxation or breathing exercises to lower stress and ease tense muscles. Avoid caffeine, alcohol, and tobacco. Ask your doctor or pharmacist if any of your medications cause sleeplessness or daytime drowsiness. Talk to your doctor about trying over-the-counter (OTC) supplements such as valerian, melatonin, passionflower, or chamomile.
If none of those steps help, you may want to see a sleep specialist who can assess you for sleep apnea, a common disorder in which your airway closes off until you wake up, gasp for air, and then go back to sleep. Most people with apnea are unaware that this is happening, but their partners often report excessive snoring. This can happen so frequently that people are chronically exhausted. The good news is that it’s treatable with a device called CPAP (continuous positive airway pressure).
Another common disorder, restless legs syndrome, gives you strong unpleasant sensations that make you want to move your legs. It’s often worse at night and can interfere with sleep.
For PEM, a therapy called pacing is often effective. You figure out what level of physical or mental activity you can tolerate and learn to live inside your “energy envelope.” Here are some suggestions from the Solve ME/CFS Initiative:
- Prioritize what you need to do in a day. Delegate when possible and eliminate nonessential tasks.
- Complete small segments of activities with rest periods in between.
- If you have to do something that takes extra energy, rest before and after.
- If you feel dizzy, short of breath, or have other symptoms, immediately stop what you’re doing and rest.
- Don’t push through when you feel unwell or overdo it when you feel good.
- Pay attention to emotional triggers. Worrying and feeling angry can sap you of energy.
For most people, ME/CFS is a lifetime disease, although there may be periods of remission. ME/CFS is not fatal, but it can be very debilitating: About 50 percent of people will be able to return to full- or part-time work, but about one-fourth will be housebound or bed-ridden at times.
Now that ME/CFS is finally being taken seriously, researchers may start finding answers to the mystery of its cause, and develop more effective treatments, maybe even a cure.